Posts tagged: Bruxism

A simple question…. hopefully!

Question:

– Hide quoted text — Show quoted text – I have just started to get a pain in my jaw/teeth/ear (I’m not entirely sure where it’s stemming from) and I’m trying to work out what it is. Initially it felt like a toothache but I went to the dentist who said it was nothing to do with my teeth. He suggested that maybe it was something to do with grinding my teeth at night, although he said there was no evidence of me having ground my teeth down at all. It has only been happening for about a month and has got a lot worse in the last week or so. Usually I will be in pain first thing in the morning, then fine until late afternoon when it starts hurting again. Then by the time I go to sleep it’s excruciatingly painful. I thought it was quite likely since I have been on Prozac since September last year but then thought, surely this would have started earlier and not become so severe so suddenly? Has anyone experienced anything like this? I’m wondering whether I should see my GP or if this is something I just need to deal with or maybe look into getting some sort of NTI thing to stop my jaw moving when I sleep? Rachel

We may hope Jim Boyd will join the conversation, but for starters, bruxism, which may lead to migraine, requires only clenching, not the back and forth or lateral movements that would (eventually) show up as grinding. There is a fair likelihood that our GP will be completely unfamiliar with the NTI, but if you can get some information for him, perhaps from Dr. Boyd’s website (http://www.nti-tss.com/), your family physician might be willing to prescribe one.   You could also find a dntist in your area who fits the NTI-tss, but if you have medical but not dental insurance, there is at least a chance that if your family physician prescribes it, your insurance company will pay.  It is, after all, for a medical condition, not a dental problem per se.

Response:

Oh and I suffer from chronic migraines which and noticed people talking on here about grinding teeth in your sleep, was interested to know if this may be the cause of mine…

– Hide quoted text — Show quoted text – I have just started to get a pain in my jaw/teeth/ear (I’m not entirely sure where it’s stemming from) and I’m trying to work out what it is. Initially it felt like a toothache but I went to the dentist who said it was nothing to do with my teeth. He suggested that maybe it was something to do with grinding my teeth at night, although he said there was no evidence of me having ground my teeth down at all. It has only been happening for about a month and has got a lot worse in the last week or so. Usually I will be in pain first thing in the morning, then fine until late afternoon when it starts hurting again. Then by the time I go to sleep it’s excruciatingly painful. I thought it was quite likely since I have been on Prozac since September last year but then thought, surely this would have started earlier and not become so severe so suddenly? Has anyone experienced anything like this? I’m wondering whether I should see my GP or if this is something I just need to deal with or maybe look into getting some sort of NTI thing to stop my jaw moving when I sleep? Rachel

Response:

I have just started to get a pain in my jaw/teeth/ear (I’m not entirely sure where it’s stemming from) and I’m trying to work out what it is. Initially it felt like a toothache but I went to the dentist who said it was nothing to do with my teeth. He suggested that maybe it was something to do with grinding my teeth at night, although he said there was no evidence of me having ground my teeth down at all. It has only been happening for about a month and has got a lot worse in the last week or so. Usually I will be in pain first thing in the morning, then fine until late afternoon when it starts hurting again. Then by the time I go to sleep it’s excruciatingly painful. I thought it was quite likely since I have been on Prozac since September last year but then thought, surely this would have started earlier and not become so severe so suddenly? Has anyone experienced anything like this? I’m wondering whether I should see my GP or if this is something I just need to deal with or maybe look into getting some sort of NTI thing to stop my jaw moving when I sleep? Rachel

Response:

– Hide quoted text — Show quoted text – in I have just started to get a pain in my jaw/teeth/ear (I’m not entirely sure where it’s stemming from) and I’m trying to work out what it is. Initially it felt like a toothache but I went to the dentist who said it was nothing to do with my teeth. He suggested that maybe it was something to do with grinding my teeth at night, although he said there was no evidence of me having ground my teeth down at all. It has only been happening for about a month and has got a lot worse in the last week or so. Usually I will be in pain first thing in the morning, then fine until late afternoon when it starts hurting again. Then by the time I go to sleep it’s excruciatingly painful. I thought it was quite likely since I have been on Prozac since September last year but then thought, surely this would have started earlier and not become so severe so suddenly? Has anyone experienced anything like this? I’m wondering whether I should see my GP or if this is something I just need to deal with or maybe look into getting some sort of NTI thing to stop my jaw moving when I sleep? Rachel We may hope Jim Boyd will join the conversation, but for starters, bruxism, which may lead to migraine, requires only clenching, not the back and forth or lateral movements that would (eventually) show up as grinding. There is a fair likelihood that our GP will be completely unfamiliar with the NTI, but if you can get some information for him, perhaps from Dr. Boyd’s website (http://www.nti-tss.com/), your family physician might be willing to prescribe one.   You could also find a dntist in your area who fits the NTI-tss, but if you have medical but not dental insurance, there is at least a chance that if your family physician prescribes it, your insurance company will pay.  It is, after all, for a medical condition, not a dental problem per se. Thank you, I will look into this. Do you know what causes bruxism?

Sorry, no I don’t know.

Response:

Thanks for the info

– Hide quoted text — Show quoted text – It’s not the grinding, it’s the clenching that creates these symtoms. Here’s some background from my cheezy on-line book that identifies the "Chronic Clenching Symdrome" http://www.drjimboyd.com/book/7th_sth.htm And the difference between an NTI and a traditional mouthpiece: http://www.headacheprevention.com/pages/whatisit.html -El Lobbing-info-bombs-O~ Rachel, I’ve had a tooth hurt like that, on and off, when my world gets especially crazy.  It’s likely for me that I’m putting different stress on my jaw when I sleep, or it could be my sleep being disrupted from the problem-du-jour…  which is basically the same thing. And like yur dentist said about yours, mine seldom turns out to be a problem with the actual tooth. Sometimes, instead of pain, I get hot and/or cold sensitivity. That’s fun, when you don’t know it’s waiting for the next cold iced tea or hot meal! Ginnie I have just started to get a pain in my jaw/teeth/ear (I’m not entirely sure where it’s stemming from) and I’m trying to work out what it is. Initially it felt like a toothache but I went to the dentist who said it was nothing to do with my teeth. He suggested that maybe it was something to do with grinding my teeth at night, although he said there was no evidence of me having ground my teeth down at all. It has only been happening for about a month and has got a lot worse in the last week or so. Usually I will be in pain first thing in the morning, then fine until late afternoon when it starts hurting again. Then by the time I go to sleep it’s excruciatingly painful. I thought it was quite likely since I have been on Prozac since September last year but then thought, surely this would have started earlier and not become so severe so suddenly? Has anyone experienced anything like this? I’m wondering whether I should see my GP or if this is something I just need to deal with or maybe look into getting some sort of NTI thing to stop my jaw moving when I sleep? Rachel

Response:

Mine seems to be very on and off at the moment. It’s weird because it only started a month ago or two ago. I thought it might be because I suffer from depression and am taking SSRI medication, apparently this can cause clenching/grinding of the teeth. But I have been on these since September last year so I’m not sure why it’s started now. It’s bizarre as well because I have been a hell of a lot more stressed than I am right now so am not sure why all of a sudden it’s started. Went to see my osteopath yesterday and it relieved the tension slightly but I need to find some sort of preventative rather than to pay $50 every time it gets too much.

– Hide quoted text — Show quoted text – Rachel, I’ve had a tooth hurt like that, on and off, when my world gets especially crazy.  It’s likely for me that I’m putting different stress on my jaw when I sleep, or it could be my sleep being disrupted from the problem-du-jour…  which is basically the same thing. And like yur dentist said about yours, mine seldom turns out to be a problem with the actual tooth. Sometimes, instead of pain, I get hot and/or cold sensitivity. That’s fun, when you don’t know it’s waiting for the next cold iced tea or hot meal! Ginnie I have just started to get a pain in my jaw/teeth/ear (I’m not entirely sure where it’s stemming from) and I’m trying to work out what it is. Initially it felt like a toothache but I went to the dentist who said it was nothing to do with my teeth. He suggested that maybe it was something to do with grinding my teeth at night, although he said there was no evidence of me having ground my teeth down at all. It has only been happening for about a month and has got a lot worse in the last week or so. Usually I will be in pain first thing in the morning, then fine until late afternoon when it starts hurting again. Then by the time I go to sleep it’s excruciatingly painful. I thought it was quite likely since I have been on Prozac since September last year but then thought, surely this would have started earlier and not become so severe so suddenly? Has anyone experienced anything like this? I’m wondering whether I should see my GP or if this is something I just need to deal with or maybe look into getting some sort of NTI thing to stop my jaw moving when I sleep? Rachel

Response:

– Hide quoted text — Show quoted text – I have just started to get a pain in my jaw/teeth/ear (I’m not entirely sure where it’s stemming from) and I’m trying to work out what it is. Initially it felt like a toothache but I went to the dentist who said it was nothing to do with my teeth. He suggested that maybe it was something to do with grinding my teeth at night, although he said there was no evidence of me having ground my teeth down at all. It has only been happening for about a month and has got a lot worse in the last week or so. Usually I will be in pain first thing in the morning, then fine until late afternoon when it starts hurting again. Then by the time I go to sleep it’s excruciatingly painful. I thought it was quite likely since I have been on Prozac since September last year but then thought, surely this would have started earlier and not become so severe so suddenly? Has anyone experienced anything like this? I’m wondering whether I should see my GP or if this is something I just need to deal with or maybe look into getting some sort of NTI thing to stop my jaw moving when I sleep? Rachel We may hope Jim Boyd will join the conversation, but for starters, bruxism, which may lead to migraine, requires only clenching, not the back and forth or lateral movements that would (eventually) show up as grinding. There is a fair likelihood that our GP will be completely unfamiliar with the NTI, but if you can get some information for him, perhaps from Dr. Boyd’s website (http://www.nti-tss.com/), your family physician might be willing to prescribe one.   You could also find a dntist in your area who fits the NTI-tss, but if you have medical but not dental insurance, there is at least a chance that if your family physician prescribes it, your insurance company will pay.  It is, after all, for a medical condition, not a dental problem per se.

Thank you, I will look into this. Do you know what causes bruxism?

Response:

It’s not the grinding, it’s the clenching that creates these symtoms. Here’s some background from my cheezy on-line book that identifies the "Chronic Clenching Symdrome" http://www.drjimboyd.com/book/7th_sth.htm And the difference between an NTI and a traditional mouthpiece: http://www.headacheprevention.com/pages/whatisit.html -El Lobbing-info-bombs-O~ – Hide quoted text — Show quoted text – Rachel, I’ve had a tooth hurt like that, on and off, when my world gets especially crazy.  It’s likely for me that I’m putting different stress on my jaw when I sleep, or it could be my sleep being disrupted from the problem-du-jour…  which is basically the same thing. And like yur dentist said about yours, mine seldom turns out to be a problem with the actual tooth. Sometimes, instead of pain, I get hot and/or cold sensitivity. That’s fun, when you don’t know it’s waiting for the next cold iced tea or hot meal! Ginnie I have just started to get a pain in my jaw/teeth/ear (I’m not entirely sure where it’s stemming from) and I’m trying to work out what it is. Initially it felt like a toothache but I went to the dentist who said it was nothing to do with my teeth. He suggested that maybe it was something to do with grinding my teeth at night, although he said there was no evidence of me having ground my teeth down at all. It has only been happening for about a month and has got a lot worse in the last week or so. Usually I will be in pain first thing in the morning, then fine until late afternoon when it starts hurting again. Then by the time I go to sleep it’s excruciatingly painful. I thought it was quite likely since I have been on Prozac since September last year but then thought, surely this would have started earlier and not become so severe so suddenly? Has anyone experienced anything like this? I’m wondering whether I should see my GP or if this is something I just need to deal with or maybe look into getting some sort of NTI thing to stop my jaw moving when I sleep? Rachel

Response:

Rachel, I’ve had a tooth hurt like that, on and off, when my world gets especially crazy.  It’s likely for me that I’m putting different stress on my jaw when I sleep, or it could be my sleep being disrupted from the problem-du-jour…  which is basically the same thing. And like yur dentist said about yours, mine seldom turns out to be a problem with the actual tooth. Sometimes, instead of pain, I get hot and/or cold sensitivity. That’s fun, when you don’t know it’s waiting for the next cold iced tea or hot meal! Ginnie – Hide quoted text — Show quoted text – I have just started to get a pain in my jaw/teeth/ear (I’m not entirely sure where it’s stemming from) and I’m trying to work out what it is. Initially it felt like a toothache but I went to the dentist who said it was nothing to do with my teeth. He suggested that maybe it was something to do with grinding my teeth at night, although he said there was no evidence of me having ground my teeth down at all. It has only been happening for about a month and has got a lot worse in the last week or so. Usually I will be in pain first thing in the morning, then fine until late afternoon when it starts hurting again. Then by the time I go to sleep it’s excruciatingly painful. I thought it was quite likely since I have been on Prozac since September last year but then thought, surely this would have started earlier and not become so severe so suddenly? Has anyone experienced anything like this? I’m wondering whether I should see my GP or if this is something I just need to deal with or maybe look into getting some sort of NTI thing to stop my jaw moving when I sleep? Rachel

Response:

"GrindAlert" – A cure for clenching/grinding headaches???

Question:

[snip] Oh, BTW, here’s some video clips of my Lounge Act (the patient interview part) http://www.nti-tss.com/mx3/ -El Thankyou-ThankyouVeryMuch-O~

I could relate to so many of the migraine sufferers in that clip.  Had any of them tried the NTI yet?  If not, I bet they all left wanting one.  What stood out to me was that everyone was able to stand those bright lights.  I would have been in sunglasses or wearing a hat :) Jasmine

Response:

Haze I’ve have both a daytime and nightime NTI for some time now. I’ve been a toothgrinder since childhood. I find that having the NTI in makes me clench my teeth more. Somehow the fact that it’s there makes me play with it. I t was prescibed  to try and lessen pain I have in my temple.

So if it’s there during the day, you’re not clenching. And when it’s not there, you are now *aware* of daytime clenching. (if the bump-deal on the daytime device is too big, yeah, it’ll make you want to bite on it more… so maybe it can be altered a bit, too) The Grind-Alert is a great concept. The only bummer is that the *real* intense jaw-clenching occurs during stages of sleep that the G-A’s beeper wouldn’t wake you. If the volume were turned waaaay up and it *did* wake you, you’d be like the crew of the Enterprise in the episode where nobody was getting any deep, restful sleep… in la-la land. I’m looking to work with Grind-Alert to use it as a diagnostic device.  An MD would Rx it, and it would record the intensity of your temporal jaw clenching during.  If it was over a certain threshold, then off to the dentist you go for an NTI… Oh, BTW, here’s some video clips of my Lounge Act (the patient interview part) http://www.nti-tss.com/mx3/ -El Thankyou-ThankyouVeryMuch-O~

Response:

Haze I’ve have both a daytime and nightime NTI for some time now. I’ve been a toothgrinder since childhood. I find that having the NTI in makes me clench my teeth more. Somehow the fact that it’s there makes me play with it. I t was prescibed  to try and lessen pain I have in my temple. Tommy

– Hide quoted text — Show quoted text – Firstly, an apology. I have posted on here on occasion over the past few years, initially mainly while finding out about the NTI (still in use, and still giving significant relief), but I need to apologise now, because at least twice, not so long ago, I have posted queries, and plenty of people replied to me. Unfortunately I have had some family problems which took me away from home (and my PC!) frequently for a fair while, plus I kept having problems with my PC and internet. So I never managed to reply to people’s comments, until it got ridiculously late and I felt it would probably be inappropriate to resurrect old threads. Anyway, apologies to all who replied to me, and many thanks for your replies, which were very helpful. Circumstances have now improved, so I should be around to reply to anyone, wonderful man who helped me get his NTI in the UK a few years ago, which helps me loads! However, I would basically like to know if anyone knows anything about the "GrindAlert" device. I came across the website http://www.bruxcare.com  while searching for info about bruxism (I have suffered the headaches and TMJ effects for the past 5 years, since the age of 22, and tried various medications and mouthguards). Basically it’s a headband with a sensor on which you wear at night and it sounds a (quiet!) alarm when you clench/grind to condition you to stop. It also records your bruxism activity. I have emailed the company for info, but wondered if anyone here knew anything about it and its effectiveness. I am wondering if I would have trouble getting one, as they are based in the USA, and I live in the UK….and how much it might cost!! Thanks in advance for any info, and apologies again! Pain-free wishes, Hazel xx

Response:

Firstly, an apology. I have posted on here on occasion over the past few years, initially mainly while finding out about the NTI (still in use, and still giving significant relief), but I need to apologise now, because at least twice, not so long ago, I have posted queries, and plenty of people replied to me. Unfortunately I have had some family problems which took me away from home (and my PC!) frequently for a fair while, plus I kept having problems with my PC and internet. So I never managed to reply to people’s comments, until it got ridiculously late and I felt it would probably be inappropriate to resurrect old threads. Anyway, apologies to all who replied to me, and many thanks for your replies, which were very helpful. Circumstances have now improved, so I should be around to reply to anyone, man who helped me get his NTI in the UK a few years ago, which helps me loads! However, I would basically like to know if anyone knows anything about the "GrindAlert" device. I came across the website http://www.bruxcare.com  while searching for info about bruxism (I have suffered the headaches and TMJ effects for the past 5 years, since the age of 22, and tried various medications and mouthguards). Basically it’s a headband with a sensor on which you wear at night and it sounds a (quiet!) alarm when you clench/grind to condition you to stop. It also records your bruxism activity. I have emailed the company for info, but wondered if anyone here knew anything about it and its effectiveness. I am wondering if I would have trouble getting one, as they are based in the USA, and I live in the UK….and how much it might cost!! Thanks in advance for any info, and apologies again! Pain-free wishes, Hazel xx

Response:

What I meant was that when I have the NTI in during the day I feel myself pushing my teeth together. Kind of like chewing the NTI.I guess I’m getting the benefit of having my teeth kept apart but I feel the tendons in my temple getting sore. Just being honest.

– Hide quoted text — Show quoted text – Haze I’ve have both a daytime and nightime NTI for some time now. I’ve been a toothgrinder since childhood. I find that having the NTI in makes me clench my teeth more. Somehow the fact that it’s there makes me play with it. I t was prescibed  to try and lessen pain I have in my temple. So if it’s there during the day, you’re not clenching. And when it’s not there, you are now *aware* of daytime clenching. (if the bump-deal on the daytime device is too big, yeah, it’ll make you want to bite on it more… so maybe it can be altered a bit, too) The Grind-Alert is a great concept. The only bummer is that the *real* intense jaw-clenching occurs during stages of sleep that the G-A’s beeper wouldn’t wake you. If the volume were turned waaaay up and it *did* wake you, you’d be like the crew of the Enterprise in the episode where nobody was getting any deep, restful sleep… in la-la land. I’m looking to work with Grind-Alert to use it as a diagnostic device.  An MD would Rx it, and it would record the intensity of your temporal jaw clenching during.  If it was over a certain threshold, then off to the dentist you go for an NTI… Oh, BTW, here’s some video clips of my Lounge Act (the patient interview part) http://www.nti-tss.com/mx3/ -El Thankyou-ThankyouVeryMuch-O~

Response:

These EMG signaling devices have been around a loooooooooong time, but the problem was always one of false positives during normal movement. sEMG is not that specific unless bandpasses, etc. are VERY carefully chosen. They are not the normal EMG bandpasses that are used in most biofeedback machines. I have the instruments, and electrodes to be more specific, but, IMO, it would take 2 independent channels to keep the false positive rate down. It could also be done with one channel, with the assumption that clenching is always a bilateral action, and Jim would know that. This is NOT a criticism of this device, and I’ll try to obtain more specifics from the manufacturer. Also, this is a wake-up device, as opposed to Jim’s. Jack http://howtorelax.com/Preandpub.htm for my background in sEMG – Hide quoted text — Show quoted text – Haze I’ve have both a daytime and nightime NTI for some time now. I’ve been a toothgrinder since childhood. I find that having the NTI in makes me clench my teeth more. Somehow the fact that it’s there makes me play with it. I t was prescibed  to try and lessen pain I have in my temple. So if it’s there during the day, you’re not clenching. And when it’s not there, you are now *aware* of daytime clenching. (if the bump-deal on the daytime device is too big, yeah, it’ll make you want to bite on it more… so maybe it can be altered a bit, too) The Grind-Alert is a great concept. The only bummer is that the *real* intense jaw-clenching occurs during stages of sleep that the G-A’s beeper wouldn’t wake you. If the volume were turned waaaay up and it *did* wake you, you’d be like the crew of the Enterprise in the episode where nobody was getting any deep, restful sleep… in la-la land. I’m looking to work with Grind-Alert to use it as a diagnostic device.  An MD would Rx it, and it would record the intensity of your temporal jaw clenching during.  If it was over a certain threshold, then off to the dentist you go for an NTI… Oh, BTW, here’s some video clips of my Lounge Act (the patient interview part) http://www.nti-tss.com/mx3/ -El Thankyou-ThankyouVeryMuch-O~

Response:

Thanks for that Erik. Glad to hear Seroquel helped you, and best of luck with whatever else you’ve got going on. Hazel xx

– Hide quoted text — Show quoted text – Hi Hazel, My nightly teeth grinding completely disappeared after I started taking seroquel.  I have a lot more going on then just migraines, but I thought I’d mention it. BTW, no need for apologies.   Your note below may have helped others as well as yourself. Erik Firstly, an apology. I have posted on here on occasion over the past few years, initially mainly while finding out about the NTI (still in use, and still giving significant relief), but I need to apologise now, because at least twice, not so long ago, I have posted queries, and plenty of people replied to me. Unfortunately I have had some family problems which took me away from home (and my PC!) frequently for a fair while, plus I kept having problems with my PC and internet. So I never managed to reply to people’s comments, until it got ridiculously late and I felt it would probably be inappropriate to resurrect old threads. Anyway, apologies to all who replied to me, and many thanks for your replies, which were very helpful. Circumstances have now improved, so I should be around to reply to anyone, wonderful man who helped me get his NTI in the UK a few years ago, which helps me loads! However, I would basically like to know if anyone knows anything about the "GrindAlert" device. I came across the website http://www.bruxcare.com  while searching for info about bruxism (I have suffered the headaches and TMJ effects for the past 5 years, since the age of 22, and tried various medications and mouthguards). Basically it’s a headband with a sensor on which you wear at night and it sounds a (quiet!) alarm when you clench/grind to condition you to stop. It also records your bruxism activity. I have emailed the company for info, but wondered if anyone here knew anything about it and its effectiveness. I am wondering if I would have trouble getting one, as they are based in the USA, and I live in the UK….and how much it might cost!! Thanks in advance for any info, and apologies again! Pain-free wishes, Hazel xx

Response:

Hi Sir Boyd! :-) The only bummer is that the *real* intense jaw-clenching occurs during stages of sleep that the G-A’s beeper wouldn’t wake you. This was my concern. I sleep like a zombie. From what you say, do you mean that clenching mainly occurs during deep sleep?

Clenching is simply having your teeth touching for longer than the necessary .2 seconds of contact that occurs during chewing (and sliiiightly longer during swallowing). What *really* matters is the -intensity; -frequency; -duration of the clenching episodes, and those during sleep are the most *intense*, and those are the ones that really count. I sometimes find that I do it during the first few minutes of sleep (as well as during the night obviously or I wouldn’t have developed my problems!) – my husband hears me if he falls asleep before me. Also, sometimes, if I hit the snooze button when my alarm goes off, and go back to sleep (which is surely light sleep?) for even 2 or 3 minutes, I get head pain, when I was pain-free when I woke up the previous 2 or 3 minutes before! – presumably because I spent those 2 or 3 minutes clenching and grinding! Is this normal?

Well, it’s "normal" for the chronic headache sufferer! One of the JimBoydian Slogans for headache suffereres is: "When you wake up, get up", meaning, don’t do the snooze-thang, cuz you might do a clench-fest and mess up the rest of your day. I find it amazing that even 2 or 3 minutes can cause pain!

If you think your sprained ankle is all better, try giving it a quick twist, and see if it doesn’t hurt for the rest of the day.  ;-) Fortunately I have found this to have improved since I have been taking Cyproheptadine – and I have also reduced my snooze (second alarm) to 1 minute!

Most meds have an effect on sleep patterns. If the clenching component is reduced, then headaches are said to be helped by the med! -clip- While I am "speaking" to you, El-Full Of Useful-Info-O (or "the Boydster" as my husband calls you!), may I pick your brains a tad more….? :-)   I have noticed a definite crack appearing between my 2 lower front teeth, which the NTI sits on. Should I be concerned about this? Could it be something to do with my NTI, perhaps it needs moderating? (it’s due to have its divots filled anyway). I’ve only noticed it over the last few months, but I have had the NTI since March 2001. As an additional bonus, the NTI has smoothed out those jagged edges of my lower teeth – I now look all filed and tidy! :-)

You might consider having the NTI made over those lower teeth, so that bump-deal opposes your upper incisors instead. By the way, I have also recently developed neck pain/stiffness, on the right side, the same side I mostly get headaches……another symptom of this damn thing!!

You could easily be shifting your jaw waaaaaay over, and clenching on the bump-deal with a lower canine tooth.  Not only would your neck bug you from that, but you’d continue to have headaches.   (making the device on the lower teeth is again the remedy).  Which reminds me, have you (or anyone else, of course!) ever heard of hypnotism helping anyone to stop clenching/grinding? Just something I’ve pondered….

Sure, for during the day. -El Jim

My Effexor withdrawal

Question:

typed: – Hide quoted text — Show quoted text -<Posted and Mailed Boy does your description ever sound familiar. I tapered off Effexor and went on Wellbutrin and it was 3 weeks of pure hell. It was all I could do to move my head around without feeling the brain zaps and the extreme dizziness. Maybe it’s the Effexor-Wellbutrin combo. What do you think? I am NOT in favor of changing two meds simultaneously!!! IMO you should be slowly (and fully) tapered off a med BEFORE starting another. I am at least conservative in this pharmacological principle. Also I am a firm believer in the adage "Start with low dosages and titrate slowly." In addition I strongly believe in polypharmacy (the use of multiple mood stabilizers). I firmly believe if pdocs followed these rules, we would not be having so many problems with adverse side effects and achieving mood stability. For example I selected, titrated, and still use 5 psychotropics. The result – I no longer experience ANY mood swings. :0))) And they also control the absence seizures brought on by taking Depakote and lithium. Of course I can never fly or drive again. But that’s OK since I have no money for either. <G Janice All the best from, James

You had seizures brought on by Depakote? Can you explain to me how that happened? I have recently gone through a seizure experience myself and all three of my docs believe that they were brought on by the Remeron I was taking at the time and that I was also on too low of a dose of Depakote. -Hilaire

Response:

Hi James, It is so wonderful to find you back here on-line! The last month or so during the worst of my transition (being on half of the required dosage of two different antidepressants does not equal one full antidepressant dose) I sank into one of those introverted isolated depressions. I wasn’t emailing anybody, my apologies. I presume this is Wellbutrin SR which is taken twice daily. For more information please see: I presume this is Effexor XR which SHOULD be taken twice daily if you don’t want to run into problems! For more information please see: —– Yes, you are a more precise thinker than I am. My doctor never prescribes anything other than extended release of anything because of the severity of my illness. So Effexor XR and Wellbutrin SR, correct. According to the Prescribing Information, the half-life of venlafaxline is 5 (plus or minus 2) hours and the only active metabolite ODV is 11 (plus or minus 2) hours. Consequently taking Effexor XR only once per day is insufficient from a biochemical standpoint IMO. FYI I take Effexor XR BID. Yes, I fully realize that the Prescribing Information says that you can take Effexor XR only once per day – but some patients will have all sorts of problems if they do so! They are the ones whose metabolisms are much faster than normal. Lets assume that they are 2 standard deviations faster than normal. Then the half-life of venlafaxline for them is only 1 hour and the half-life of ODV is 7 hours. Clearly these individuals should be taking Effexor at least twice per day! —– I agree now. My experience is a testament to bid for Effexor. What can I say, I believed/trusted my pdoc on that one. He’s usually correct, but this time not even close. I am going to refer him to the facts you cite so that hopefully someone else can benefit from my pain. The maximum dose of Effexor XR I can tolerate is 37.5 mg BID. —– Wow. YBMV!!!!! I was on 225 and only 60-70% out of the depression. Radically increasing Seroquel for sleep (from 6.25 mg for insomnia to 100 mg)

Surely there are sleeping meds far less potent than the powerful antipsychotic Seroquel with fewer adverse side effects??? Have you ever tried the sleeping aid Sonata? —– What can I say? You and I may tend towards different extremes, or maybe it is I who tends toward an extreme. Sonata, even 2-3x recommended dose, is was if I didn’t take anything at all. For a while Ambien worked, but at the more intense insomnia levels again 2-3x my recommended dose and an hour later I’d be staring at the ceiling wondering when it was going to kick in. I have always had "king-sized" insomnias when they are bad. When I am normal 1/4 the 25 pill of Seraquel is plenty to get me to sleep, now 100 mg and it still takes a while to sleep. Not only does my biochemistry reach extremes, it also varies considerably (as it has during last 2 months). What worked once doesn’t work now. Wellbutrin increases the dopamine neurotransmitter. Some people find that this aids them in quitting smoking. Were you also trying to quit? —– No, I am remarkably health-conscious other than this beast. No beast, almost no caffeine, no drugs liquor nicotine etc. I manufacture my own mind-altering experiences. This time on Effexor if I forgot a dose, that meant that I skipped it that day. I took it, all 225 mg of it, first thing in the morning because of the negative effect that taking it later in the day had on my sleep.

So you were taking Effexor XR only once a day? You must have been finding the norepinephrine to have an excessively stimulating effect on you. Thus it was interfering with your sleep. Clearly you were taking too large of a dose! The doses given in the Prescribing Information are only meant for a rough guideline. A competent pdoc ALWAYS adjusts the dosages according to how his/her patient is FEELING. To blindly follow what the PDR says is the height of INCOMPETENCY! Cookbook recipes don’t work for us! In case pdocs haven’t noticed, we are not COOKIES! We are individual humans with each one of us having individualistic reactions to EVERY psychiatric med! DUH!!! —– James it is good to see you rant. :) ) Sometimes you can come off a little cool and a little heat balances that off. I think that the pdocs should have some of us teach and/or oversee some of the psychiatry classes in med school. We could give them several ear-fulls excuse me I mean orifice-fulls of experience/advice. Your problems were compounded by: (1) Taking too large of a dose of Effexor XR for YOU. (2) Not taking a smaller total dose and dividing it up into 2 equal daily portions – so that you would not have gotten such a "spike" of norepinephrine into your system. I believe this large spike caused your system to develop a dependency for it and exacerbated your withdrawal symptoms. In essence your pdoc got you "hooked" on this stimulant. —– (1) I disagree. Taking over the recommended maximum daily dose I was still not getting out of the depression. Seems to me more like wrong drug for me. (2) Absolutely. That is why I came here to post, even though I still feel spectacularly lousy. If one person reads these posts and "encourages" their pdoc to divide Effexor into 2 doses, thereby missing this misery, that will give me a sigh of gratitude. Obviously he knows NOTHING about biochemistry and the effects of short to moderate half-lifes and the effect of metabolism rates! If I were you, I would get a new pdoc. IMO only about half of them are competent to practice. They frequently do more harm than good. :0((( —– Hmm. Maybe I’d better rethink forwarding your post to my pdoc. ;) He is a decent, respectful pdoc who isn’t nearly as bright as I am (boy did it surprise me when he told me that) but who returns my phone calls, allows me to direct parts of the treatment (he let me go out on the Internet and choose Wellbutrin as my next AD), and went with me (gratis, for his own education) to the best psychopharmacologist in our state when I was exploring non-Lithium options. * ELECTRIC ZAPS. The worst, by far for me, is the zap.

Let me know how you respond and I will try to come up with a more conservative tapering schedule. —– A little late oops. I’m totally off the stuff and damned if I’m ever taking it again. Yes, I know that it was mismanaged. But even the risk of this again is enough to give me a terrible case of the dear-me’s. Wishing you all the very best from, James D. Milton, Ph.D., Sc.D. —– This was wonderful! I didn’t realize that you were PhD. If I ever get the energy/brain together in time to finish by December I too will have tangible proof of my over-educated nerdiness. Bless you, and please stay in asdmm, -Gandalf (who is going to take her mind off her troubles and go see Matrix Revisited)

Response:

<Posted and Mailed

<Continued from Part 1 – Hide quoted text — Show quoted text – This time on Effexor if I forgot a dose, that meant that I skipped it that day. I took it, all 225 mg of it, first thing in the morning because of the negative effect that taking it later in the day had on my sleep. So you were taking Effexor XR only once a day? You must have been finding the norepinephrine to have an excessively stimulating effect on you. Thus it was interfering with your sleep. Clearly you were taking too large of a dose! The doses given in the Prescribing Information are only meant for a rough guideline. A competent pdoc ALWAYS adjusts the dosages according to how his/her patient is FEELING. To blindly follow what the PDR says is the height of INCOMPETENCY! Cookbook recipes don’t work for us! In case pdocs haven’t noticed, we are not COOKIES! We are individual humans with each one of us having individualistic reactions to EVERY psychiatric med! DUH!!! —– James, it is good to see you rant. :) ) Sometimes you can come off a little cool and a little heat balances that off.

Slavishly following the Prescribing Information is one of my Hot Button Topics! It is too bad that pdocs don’t first have to take every med they prescribe!!! That would make them a lot more careful if they had to take a taste of their own medicine. <G I think that the pdocs should have some of us teach and/or oversee some of the psychiatry classes in med school. We could give them several ear-fulls excuse me I mean orifice-fulls of experience/advice.

That is a Good Idea! But unfortunately pdocs don’t usually pay any attention to anyone who doesn’t have a M.D. after their name. :0( Your problems were compounded by: (1) Taking too large of a dose of Effexor XR for YOU. (2) Not taking a smaller total dose and dividing it up into 2 equal daily portions – so that you would not have gotten such a "spike" of norepinephrine into your system. I believe this large spike caused your system to develop a dependency for it and exacerbated your withdrawal symptoms. In essence your pdoc got you "hooked" on this stimulant. —– (1) I disagree. Taking over the recommended maximum daily dose I was still not getting out of the depression. Seems to me more like wrong drug for me.

Possibly. But also possibly you were taking it in the wrong way. Oftentimes the WAY in which a med is taken, is as important as WHAT is being taken! As an example the half-life of Neurontin is so short that it should be taken 4 times per day – not the 3 times per day as the PDR recommends. (2) Absolutely. That is why I came here to post, even though I still feel spectacularly lousy. If one person reads these posts and "encourages" their pdoc to divide Effexor XR into 2 doses, thereby missing this misery, that will give me a sigh of gratitude.

Let us both hope that it will do some good! Obviously he knows NOTHING about biochemistry and the effects of short to moderate half-lifes and the effect of metabolism rates! If I were you, I would get a new pdoc. IMO only about half of them are competent to practice. They frequently do more harm than good. :0((( —– Hmm. Maybe I’d better rethink forwarding your post to my pdoc. ;)

Feel free to edit out any offensive (but nevertheless true) parts. He is a decent, respectful pdoc who isn’t nearly as bright as I am (boy did it surprise me when he told me that) but who returns my phone calls, allows me to direct parts of the treatment (he let me go out on the Internet and choose Wellbutrin as my next AD), and went with me (gratis, for his own education) to the best psychopharmacologist in our state when I was exploring non-Lithium options.

He sounds like a Good Guy then. My pdoc sometimes sends his refractory cases to me and he writes the scripts. Did the psychopharmacologist recommend a Calcium Channel Blocker (like verapamil) as a replacement for lithium? * ELECTRIC ZAPS. The worst, by far for me, is the zap. Let me know how you respond and I will try to come up with a more conservative tapering schedule. —– A little late oops. I’m totally off the stuff and damned if I’m ever taking it again. Yes, I know that it was mismanaged. But even the risk of this again is enough to give me a terrible case of the dear-me’s.

I misunderstood. I thought you were still having these terrible effects of withdrawal from Effexor XR. Wishing you all the very best from, James D. Milton, Ph.D., Sc.D. —– This was wonderful! I didn’t realize that you were PhD. If I ever get the energy/brain together in time to finish by December, I too will have tangible proof of my over-educated nerdiness.

If for some reason you are unable to make it by December, please be sure and apply for a medical extension of the deadline. You surely have more than sufficient justification! Bless you, and please stay in asdmm,

I will try to – but it is my physical health that prevents me from posting more. I have to stay in bed a lot. -Gandalf (who is going to take her mind off her troubles and go see Matrix Revisited)

I saw the first Matrix – but just couldn’t get into it. Wishing you the very best of success and meds from, James

Response:

<Posted and Mailed Hi James, It is so wonderful to find you back here on-line! The last month or so during the worst of my transition (being on half of the required dosage of two different antidepressants does not equal one full antidepressant dose) I sank into one of those introverted isolated depressions. I wasn’t emailing anybody, my apologies.

That’s OK – but I was concerned when I did not hear back from you. Adjusting two meds at the same time is not a procedure that I recommend. You never can tell whether the effects are from one med or the other. I presume this is Wellbutrin SR which is taken twice daily. I presume this is Effexor XR which SHOULD be taken twice daily if you don’t want to run into problems! —– Yes, you are a more precise thinker than I am. My doctor never prescribes anything other than extended release of anything because of the severity of my illness. So Effexor XR and Wellbutrin SR, correct.

Good for him! I am a Big Believer in the extended release formulations. However extended release does NOT equate to once per day dosing – no matter what the Prescribing Information may say. According to the Prescribing Information, the half-life of venlafaxline is 5 (plus or minus 2) hours and the only active metabolite ODV is 11 (plus or minus 2) hours. Consequently taking Effexor XR only once per day is insufficient from a biochemical standpoint IMO. FYI I take Effexor XR BID.

I see that I have misspelled "venlafaxine". <Sigh! Yes, I fully realize that the Prescribing Information says that you can take Effexor XR only once per day – but some patients will have all sorts of problems if they do so! They are the ones whose metabolisms are much faster than normal. Lets assume that they are 2 standard deviations faster than normal. Then the half-life of venlafaxline for them is only 1 hour and the half-life of ODV is 7 hours. Clearly these individuals should be taking Effexor at least twice per day! —– I agree now. My experience is a testament to bid for Effexor XR. What can I say, I believed/trusted my pdoc on that one. He’s usually correct, but this time not even close. I am going to refer him to the facts you cite so that hopefully someone else can benefit from my pain.

IMO the Marketing Departments won out over the guys in the white coats in the cases of Effexor XR and Depakote ER. The maximum dose of Effexor XR I can tolerate is 37.5 mg BID. —– Wow. YBMV!!!!! I was on 225 and only 60-70% out of the depression.

There are several possibilities for you: (1) You are not lacking in the norepinephrine and serotonin neurotransmitters that Effexor XR increases. Or at least they are not the SOLE cause of your depression. (2) Wellbutrin SR will raise your dopamine neurotransmitter level. So we will see whether or not you are deficient in dopamine. (3) There may be something totally unrelated to neurotransmitters that is causing your depression. Have you ever tried Thyroid Augmentation Therapy to raise your free T3 and free T4 levels to 125-150% above normal? Most thyroid panels do not even check for these. What is usually checked is your TSH (Thyroid Stimulating Hormone) level and your Total T4 level. The latter is the bound T4 and is really meaningless insofar as your brain is concerned. I am willing to bet that 10-15% of the people on this NG would benefit from Thyroid Augmentation Therapy to have their depression alleviated. I will post more on this IMPORTANT SUBJECT. Radically increasing Seroquel for sleep (from 6.25 mg for insomnia to 100 mg) Surely there are sleeping meds far less potent than the powerful antipsychotic Seroquel with fewer adverse side effects??? Have you ever tried the sleeping aid Sonata? —– What can I say? You and I may tend towards different extremes, or maybe it is I who tends toward an extreme. Sonata, even 2-3x recommended dose, is as if I didn’t take anything at all.

Sonata is perhaps one of the most gentle sleep meds available. It doesn’t so much induce sleep as most hypnotics do – but it aids normal sleep. And its half-life is so short that you wake up without that "drugged" feeling in the morning. But in your case you obviously need something more heavy duty that doesn’t merely encourage sleep. For a while Ambien worked, but at the more intense insomnia levels again 2-3x my recommended dose and an hour later I’d be staring at the ceiling wondering when it was going to kick in. I have always had "king-sized" insomnias when they are bad.

I presume that your spells of insomnia did not only correlate with your episodes of (hypo)mania? Obviously many people find sleep hard (or impossible) to come by when they are manic. When I am normal, 1/4 the 25 mg pill of Seroquel is plenty to get me to sleep, now 100 mg and it still takes a while to sleep. Not only does my biochemistry reach extremes, it also varies considerably (as it has during last 2 months). What worked once doesn’t work now.

You obviously have the ability to unfortunately develop tolerance for your meds. Wellbutrin increases the dopamine neurotransmitter. Some people find that this aids them in quitting smoking. Were you also trying to quit? —– No, I am remarkably health-conscious other than this beast. No beast, almost no caffeine, no drugs, liquor, nicotine, etc.

That is good! I manufacture my own mind-altering experiences.

Do you experience hallucinations? If so – what types? <End of Part 1 – because the Moderation software can’t/won’t handle long posts.

Response:

Molly, Sorry to hear that. Although this isn’t the worst withdrawal symptom for me, it is definitely the one that made me decide to stop driving for a while. You don’t want drivers on the road for whom their gyroscope is meandering! -Gandalf

 * YOUR HEAD IS A PIN-BALL GAME THAT IS ALWAYS ON TILT. Second worse for me is the tilt. Dizzy, spacey, the world-keeps-tilting-vertigo head. I have been avoiding driving, reading, deciding, walking (that makes it worse), etc. Instead I have been sitting most of the day at the computer, because it takes my mind off this sensation and distracts me more thoroughly than anything else. Watching TV gets very strange and doesn’t work as well.

This happens with Lexapro withdrawal too.  It’s really unpleasant. Molly — There was a young monk of Dundee Who complained that it hurt him to pee, He said, "Pax vobiscum, Now why won’t the piss come? I’m afraid I’ve the c-l-a-p."

Response:

Hi Kathleen, Yes, isn’t it bizarre?! I wouldn’t have believed Effexor withdrawal (or I’d have been skeptical it was really that bad) if I hadn’t experienced it. Unfortunately my recent thinking is that because I didn’t have those withdrawal symptoms the first time, that perhaps I could have predicted this withdrawal from the fact that I had symptoms if I missed a day. The links/info were in the first post I made before I gave my personal experience: http://www.google.com/groups?dq=&start=25&hl=en&lr=&ie=UTF-8&oe=UTF-8… alt.support.depression.manic&selm=bcaph8%24dla%241%40peabody.colorado.edu Here is part of that post: —– RESOURCES FOR EFFEXOR (and other AD) —– —–         withdrawal symptoms          —– Threads on Effexor withdrawal at about.com (there are others about Effexor in general:   Brain Shivers from Effexor http://forums.about.com/n/mb/message.asp?webtag=ab-depression&msg=916…   Effexor withdrawal [11 new of 93] http://forums.about.com/n/mb/message.asp?webtag=ab-depression&msg=114… -Gandalf Gandalf, you’ve described my experience withdrawing from Effexor to a tee. I take 225 mg. in 3 time release capsules in the morning, roughly the same time every morning.  If I forget, I’m light-headed by the next morning and getting queasy, and that’s when I realize I must’ve forgotten them the day before.  Within about an hour to 3 hrs. after taking them that second day, I’m feeling fine.  A couple times I’ve thought I had another bottle in the cabinet, only to realize I’m indeed finishing up the third bottle–I get them in 3 month supply–and once I was without any for four days.  I kept thinking I’d get better, only to find that the next day was even worse. Visual distortion is something very peculiar to add to the list; rectangular tables slowly changing into diamond-shaped tables, or maybe round, and who cares anyway because the floor is moving and the walls are waving in slow motion and I’m going to throw up.  I was ready for the hospital by the time I was able to send a friend to my doctor for some samples.  Then I took my 3 caps, was no better by late afternoon, and took another dose to boost my level.  By that night my guts had stopped churning and the room was beginning to stay more still and I could actually lift my head without throwing up. You’re right, it’s hideous.  My depression is too immobilizing when I’m not on them, though, and I feel good when I take them–along w/ some coffee in the morning–so I’m going to just be sure I’m never EVER without that drug! It is a wonder drug for me. Good to hear from you, Gandalf! Kathy F. p.s.  would you send us a link to the site you’ve found concerning ad withdrawal?

– Hide quoted text — Show quoted text – I have been on a brief hiatus here at asdm/m, having major computer problems (screw Microsoft), and getting swept up in medication changes. Specifically what I’m been going through:      Increasing lithium to provide safe margin of error for other changes (getting my level up to 1.0 or thereabouts)      Slowly coming up to 300 mg (standard therapeutic dose) Wellbutrin      Tapering off Effexor, very slowly, last dose on Sunday      Radically increasing Seraquel for sleep (from 6.25 mg for insomnia to 100 mg) I have been feeling like Alice in Wonderland. The reason I’m taking time to post now is to warn people about Effexor withdrawal. Just finished researching Effexor withdrawal on the newsgroups and on the Internet, and once again the most accurate cutting edge information is in these newsgroups (the drug companies had to be dragged kicking and screaming to the recent admission that there is such a thing as antidepressant withdrawal). While the experience is still debilitating me I figure this is a good time to describe my personal experience, strength and hope about this. The first time that I went off Effexor I worked carefully with my doctor and tapered VERY slowly off the antidepressant. I had no symptoms whatsoever going off of it. This second time is EXTREMELY different for me. I was on Lithium both times, using various sleep medications both times. Only real different is that this time we’ve been tapering upwards on the Wellbutrin simultaneous to the taper down on the Effexor. Two very similar scenarios, two *very* different experiences. This time on Effexor, if I forgot a dose that meant that I skipped it that day. I took it, all 225 mg of it, first thing in the morning because of the negative effect that taking it later in the day had on my sleep. If I missed a dose, the next day I would begin to experience extremely uncomfortable withdrawal symptoms by midmorning, painful enough that I would definitely remember to take it that morning (I never skipped 2 days in a row). I joked with my pdoc that I believed that this was a built-in characteristic of Effexor, put into the pharmaceutical nature of Effexor by the drug company so that people would stay hooked to the drug. My doctor was literally in stitches for 5 minutes. Ha, ha. [Now at $75 for a 15 minute appointment that means he owes me...] The withdrawal symptoms were very similar to the ones that I am experiencing now, listed below. Then (after taking 225 mg one day and 0 mg the next) the withdrawal symptoms were more severe than they are at the moment. But they went away completely about 3-4 hours after I took my next 225 mg dose. Now, after reading the anecdotal experience that I compendium-ed in the last post, I know that it may be 3 weeks before Alice can walk through the looking glass back into her living room. I must note that I did not get these dose-skipping withdrawal symptoms the first time I took Effexor. Also, there is really only two differences in the two Effexor regimens – (1) my 188 mg last time was divided into 2 doses (upon awakening and at 1pm), and (2) This time we increased it up to 225 before deciding to try a different AD. One change that I will definitely implement if I ever take Effexor again is to divide it into two daily doses like I did the first time. My pdoc didn’t believe that that would make any difference, and I now am suspicious. The posting that I just made aptly describes the Effexor withdrawal symptoms, sometimes in humorous terms. I’ll try to describe this delight in my own words.  * ELECTRIC ZAPS. The worst, by far for me, is the zap. Constant, mild to moderate tingling at the extremities and inside my head. But "tingling" is several orders of magnitude less than this experience. The sensation itself is about halfway between (1) the feeling you have in your foot/hand when it has gone to sleep and now the blood is slowly coming back into the limb [very unpleasant] and (2) someone applying a [pulsing, it isn't steady] electric shock to your skin and 2 inches inward. It is a very industry, and at whatever moron you used to be that started taking this god-forsaken drug.  * GASTROINTESTINAL DISTRESS. Diarrhea, lack of appetite, and all-around weirdness and uncertainty.  * GUILT AND ANGER. "I must be imagining this." "It can’t be this bad, it wasn’t last time." "But I did everything right, and everything the pdoc told me to do. It must somehow be my fault." I wanted to document what this particular case study was like. This is very stressful and most of all very VERY bizarre. Also, this is what day… Thursday – Sunday = how many days? After I stopped taking the Effexor, and the symptoms haven’t even slowed down. THIS DRUG IS NOT FOR THE FAINT OF HEART. Yea sure, you might get lucky like I was the first time. But if you look around you’ll see that the odds are remarkably bad. If I had to do it over, given the knowledge that I had at the time, I would do it again even knowing that it would end with this weirdness. But if you don’t particularly do well with weirdness, be forewarned. -Gandalf (who will now go lie down until the screen stops spinning)

Response:

Hi Maggie, Yes it does sound like our situations are similar. Figuring out what caused what is well night impossible. But for me, like you, being on Effexor for an extended period of time just didn’t get me completely well. And they say there is evidence that if we don’t get out of our depression completely that the likelihood of future depressions increases. Good wishes, – Gandalf

Although we may be on two sides of a fence it sounds like we are both on the same "lovely unadvertised effects . Effexor got me 75% cured of depressions, but that last 25% was debilitating. I need better results (particularly the Effexor didn’t bring my brain or energy level up to par).

You know, Gandalf, I’ve never really like Effexor in the 3 years I’ve been on it. The getting the brain speed up to par is right there with me, too.  Glad you mentioned it, because I sometimes wonder if the icked out state I’ve been in for so long is due to the severe depression not lifting (hey……why hasn’t it with 3 years of Effexor?) and a combination of "the invalid factor".  I actually sometimes wonder if in some bizarre way I don’t want to get better.  However, in the last month or so I have realized that i do have a set up that is incredibly inviable, and could have a very nice life without a whole lot of stress if I could just shake this mental health thing.  (get the BR2 thing at a manageable level) I have a pretty nice life pension with full medical benifits.  I am allowed to work in my field and earn a nice bit of money without effecting the penison. I have a profession that can be done part time.  there is no real reason not to "snap out of it,"  And yet I just can’t seem to get across the threashold. Your comments on effexor have given me pause for thought. Way back in the olden days, 1990-ish, I went on Prozac and stayed on it for 10 years.  while it was not a silver bullit, I remember feeling immediatey better when I started it.  (within the first month or 2.) When they finally put me on a mood stabelizer a year and a half ago…. I felt immediately better relatively soon……and hopeful for the first time in a very long time. Now, re: the Effexor.  I have never liked it and I just don’t think it’s the one for me.  It’s been a constant series of taking my level down, with p-doc’s acceptance after the fact due to the hand tremor and zombie effects.  It just doesn’t feel right to me! I’ve discussed this with my p-doc, but I think it’s time to sit down with her and have in indepth discussion about other antidepressant oprions. Thanks for starting this thread, Gandalf.  It’s clarified my situation a lot ! Maggie

Response:

<Posted and Mailed Boy does your description ever sound familiar. I tapered off Effexor and went on Wellbutrin and it was 3 weeks of pure hell. It was all I could do to move my head around without feeling the brain zaps and the extreme dizziness. Maybe it’s the Effexor-Wellbutrin combo. What do you think?

I am NOT in favor of changing two meds simultaneously!!! IMO you should be slowly (and fully) tapered off a med BEFORE starting another. I am at least conservative in this pharmacological principle. Also I am a firm believer in the adage "Start with low dosages and titrate slowly." In addition I strongly believe in polypharmacy (the use of multiple mood stabilizers). I firmly believe if pdocs followed these rules, we would not be having so many problems with adverse side effects and achieving mood stability. For example I selected, titrated, and still use 5 psychotropics. The result – I no longer experience ANY mood swings. :0))) And they also control the absence seizures brought on by taking Depakote and lithium. Of course I can never fly or drive again. But that’s OK since I have no money for either. <G Janice

All the best from, James

Response:

Boy does your description ever sound familiar I tapered off effexor and went on wellbutrin and it was 3 weeks of pure hell. It was all I could do to move my head around without feeling the brain zaps and the extreme dizziness. Maybe its the effexor wellbutrin combo. What do you think? Janice

– Hide quoted text — Show quoted text – I have been on a brief hiatus here at asdm/m, having major computer problems (screw Microsoft), and getting swept up in medication changes. Specifically what I’m been going through:      Increasing lithium to provide safe margin of error for other changes (getting my level up to 1.0 or thereabouts)      Slowly coming up to 300 mg (standard therapeutic dose) Wellbutrin      Tapering off Effexor, very slowly, last dose on Sunday      Radically increasing Seraquel for sleep (from 6.25 mg for insomnia to 100 mg) I have been feeling like Alice in Wonderland. The reason I’m taking time to post now is to warn people about Effexor withdrawal. Just finished researching Effexor withdrawal on the newsgroups and on the Internet, and once again the most accurate cutting edge information is in these newsgroups (the drug companies had to be dragged kicking and screaming to the recent admission that there is such a thing as antidepressant withdrawal). While the experience is still debilitating me I figure this is a good time to describe my personal experience, strength and hope about this. The first time that I went off Effexor I worked carefully with my doctor and tapered VERY slowly off the antidepressant. I had no symptoms whatsoever going off of it. This second time is EXTREMELY different for me. I was on Lithium both times, using various sleep medications both times. Only real different is that this time we’ve been tapering upwards on the Wellbutrin simultaneous to the taper down on the Effexor. Two very similar scenarios, two *very* different experiences. This time on Effexor, if I forgot a dose that meant that I skipped it that day. I took it, all 225 mg of it, first thing in the morning because of the negative effect that taking it later in the day had on my sleep. If I missed a dose, the next day I would begin to experience extremely uncomfortable withdrawal symptoms by midmorning, painful enough that I would definitely remember to take it that morning (I never skipped 2 days in a row). I joked with my pdoc that I believed that this was a built-in characteristic of Effexor, put into the pharmaceutical nature of Effexor by the drug company so that people would stay hooked to the drug. My doctor was literally in stitches for 5 minutes. Ha, ha. [Now at $75 for a 15 minute appointment that means he owes me...] The withdrawal symptoms were very similar to the ones that I am experiencing now, listed below. Then (after taking 225 mg one day and 0 mg the next) the withdrawal symptoms were more severe than they are at the moment. But they went away completely about 3-4 hours after I took my next 225 mg dose. Now, after reading the anecdotal experience that I compendium-ed in the last post, I know that it may be 3 weeks before Alice can walk through the looking glass back into her living room. I must note that I did not get these dose-skipping withdrawal symptoms the first time I took Effexor. Also, there is really only two differences in the two Effexor regimens – (1) my 188 mg last time was divided into 2 doses (upon awakening and at 1pm), and (2) This time we increased it up to 225 before deciding to try a different AD. One change that I will definitely implement if I ever take Effexor again is to divide it into two daily doses like I did the first time. My pdoc didn’t believe that that would make any difference, and I now am suspicious. The posting that I just made aptly describes the Effexor withdrawal symptoms, sometimes in humorous terms. I’ll try to describe this delight in my own words.  * ELECTRIC ZAPS. The worst, by far for me, is the zap. Constant, mild to moderate tingling at the extremities and inside my head. But "tingling" is several orders of magnitude less than this experience. The sensation itself is about halfway between (1) the feeling you have in your foot/hand when it has gone to sleep and now the blood is slowly coming back into the limb [very unpleasant] and (2) someone applying a [pulsing, it isn't steady] electric shock to your skin and 2 inches inward. It is a very "crazy-making" symptom. You have this pulsing-vibrating-nasty shock sensation on various random parts of your anatomy (you never know which part, but for me it is most often extremities: hands/fingers, lips, face, feet, inside my head, and then that wonderful full-body zap.  * YOUR HEAD IS A PIN-BALL GAME THAT IS ALWAYS ON TILT. Second worse for me is the tilt. Dizzy, spacey, the world-keeps-tilting-vertigo head. I have been avoiding driving, reading, deciding, walking (that makes it worse), etc. Instead I have been sitting most of the day at the computer, because it takes my mind off this sensation and distracts me more thoroughly than anything else. Watching TV gets very strange and doesn’t work as well.  * FORGET THINKING. BETTER FORGET DRIVING TOO. Next in ugliness is *considerable* memory loss and a marginalized ability to do any higher order cognitive processes. Total lack of forest, only this tree, then that tree, and the next tree, and … remind me, what is a tree and why am I looking at it? You would not believe the mistakes that I have been making, and the things I’ve been forgetting. It has been not only embarrassing and aggravating it for me has been very expensive. Just say that a padded room where they serve you 3 squares a day and you can occasionally scream your head off at the medical profession, the pharmaceutical industry, and at whatever moron you used to be that started taking this god-forsaken drug.  * GASTROINTESTINAL DISTRESS. Diarrhea, lack of appetite, and all-around weirdness and uncertainty.  * GUILT AND ANGER. "I must be imagining this." "It can’t be this bad, it wasn’t last time." "But I did everything right, and everything the pdoc told me to do. It must somehow be my fault." I wanted to document what this particular case study was like. This is very stressful and most of all very VERY bizarre. Also, this is what day… Thursday – Sunday = how many days? After I stopped taking the Effexor, and the symptoms haven’t even slowed down. THIS DRUG IS NOT FOR THE FAINT OF HEART. Yea sure, you might get lucky like I was the first time. But if you look around you’ll see that the odds are remarkably bad. If I had to do it over, given the knowledge that I had at the time, I would do it again even knowing that it would end with this weirdness. But if you don’t particularly do well with weirdness, be forewarned. -Gandalf (who will now go lie down until the screen stops spinning)

Response:

- Hide quoted text — Show quoted text – I can certainly relate to what you describe here about Effexor.  I was on Effexor XR for several months last year.  I tend to be antidepressant-resistant and have always had trouble finding one that would help me at all.  The Effexor was starting to help – I could hardly believe it. Probably you (like I) are deficient in the norepinephrine neurotransmitter. However at about the same time I began having more and more trouble with my high blood pressure.  I have taken blood pressure meds for years and had no trouble maintaining a safe blood pressure until now. Are you taking an ACE inhibitor? Hopefully NOT a beta blocker – since they are well known to cause depression!

I am taking Hyzaar and normally it controls my blood pressure very well. I had read that Effexor could cause blood pressure problems in some individuals.  (Always a *very* small minority – right?)  Well, in my case it came close to pushing me into heart attack range.  I didn’t notice it at first but day by day I began feeling worse and got to the point that I had a hard time making it up a flight of stairs.  I went to my regular physician and he immediately sent me out for a range of heart tests.  It was not unusual for my blood pressure to be 198/102 and sometimes higher. Blood pressure elevation is a well-known adverse side effect of Effexor. The amount varies from individual-to-individual. Your pdoc should have warned you to be monitoring your pressure. Of course the higher the dose of Effexor, the greater the effect on blood pressure.

I was aware of this possible side effect and did discuss it with my pdoc before taking the Effexor.  I was counting on (or hoping) that I would not be in the minority that can not take this because of blood pressure problems. – Hide quoted text — Show quoted text – I went back to my pdoc with all this and he had me do a very fast tapering off of the Effexor.  Lucky me, I was one of the minority that could not take this drug and this was the drug that was finally helping my depression. Now I had to deal with the withdrawal plus the high blood pressure. Bonnie, if you were taking lithium to stabilize manic episodes – there would have been a potential alternative for you. That’s assuming that your pdoc is not old-fashioned. There are anti-hypertensive meds called Calcium Channel Blockers (CCBs) that also have anti-manic properties. The most commonly prescribed is verapamil. It would have likely lowered your blood pressure while possibly allowing you to be weaned from lithium. For more information about CCBs please see my article on 25 mood-stabilizing meds.

My pdoc seems to be on the cutting edge of most therapies as far as I can tell anyway.  I am currently taking Lamictal as a mood stabilizer.  I am BP2 with primarily the depressive side of the illness.  Only occasionally will I become hypomanic, however when I do it can become a big problem very quickly in many different ways. There is another alternative or adjunct to antidepressants. It is called Thyroid Augmentation Therapy. IMO it a highly under appreciated and insufficiently practiced method for treating refractory depression. See my article (Parts 1 and 2) for more details.

I have had several thyroid tests in the past year and so far I have been told that it would be best to not take anything such as what you are discussing. – Hide quoted text — Show quoted text – I am not writing all this to scare anyone taking Effexor but I do think it is important that anyone on this drug be aware of some of the potential dangerous side effects.  If I had not gone to my doctor when I did I very easily might not be here today.  Many people can be unaware of blood pressure problems especially if they have not had them in the past.  I think anyone taking this drug should make an effort to get their blood pressure checked occasionally just to be safe. Absolutely! I’m glad that you caught it in time – else you could have had a stroke, an aneurysm, or a heart attack. Just one more opinion from someone that has been there, Bonnie Wishing you all the very best from, James

Thank you James for your helpful information.  I hope you are well. Bonnie

Response:

Although we may be on two sides of a fence it sounds like we are both on the same "lovely unadvertised effects . Effexor got me 75% cured of depressions, but that last 25% was debilitating. I need better results (particularly the Effexor didn’t bring my brain or energy level up to par).

You know, Gandalf, I’ve never really like Effexor in the 3 years I’ve been on it. The getting the brain speed up to par is right there with me, too.  Glad you mentioned it, because I sometimes wonder if the icked out state I’ve been in for so long is due to the severe depression not lifting (hey……why hasn’t it with 3 years of Effexor?) and a combination of "the invalid factor".  I actually sometimes wonder if in some bizarre way I don’t want to get better.  However, in the last month or so I have realized that i do have a set up that is incredibly inviable, and could have a very nice life without a whole lot of stress if I could just shake this mental health thing.  (get the BR2 thing at a manageable level) I have a pretty nice life pension with full medical benifits.  I am allowed to work in my field and earn a nice bit of money without effecting the penison.  I have a profession that can be done part time.  there is no real reason not to "snap out of it,"  And yet I just can’t seem to get across the threashold. Your comments on effexor have given me pause for thought. Way back in the olden days, 1990-ish, I went on Prozac and stayed on it for 10 years.  while it was not a silver bullit, I remember feeling immediatey better when I started it.  (within the first month or 2.) When they finally put me on a mood stabelizer a year and a half ago…. I felt immediately better relatively soon……and hopeful for the first time in a very long time. Now, re: the Effexor.  I have never liked it and I just don’t think it’s the one for me.  It’s been a constant series of taking my level down, with p-doc’s acceptance after the fact due to the hand tremor and zombie effects.  It just doesn’t feel right to me! I’ve discussed this with my p-doc, but I think it’s time to sit down with her and have in indepth discussion about other antidepressant oprions. Thanks for starting this thread, Gandalf.  It’s clarified my situation a lot ! Maggie

Response:

The reason I’m taking time to post now is to warn people about Effexor withdrawal.

Very well said. I was taking 300mg a day (all in the am) along with topamax (cant remember the dosage) for about 6 months. I would miss doses here and there and usually ended up with a swirling head, headache, and pins and needles in my hands. But it seemed to relieve 75% of the symptoms. About 3 months ago, I decided I had enough of pill taking. I stopped the Effexor cold turkey. what a mistake. for about 3 weeks, i had constant dizziness, headache, irritability, confusion. I feel better now… I would like a new med, but I am hesitant to retry Effexor. It was the only med that worked for me so far (tried paxil and prozac).

Response:

– Hide quoted text — Show quoted text – The reason I’m taking time to post now is to warn people about Effexor withdrawal. Very well said. I was taking 300mg a day (all in the am) along with topamax (cant remember the dosage) for about 6 months. I would miss doses here and there and usually ended up with a swirling head, headache, and pins and needles in my hands. But it seemed to relieve 75% of the symptoms. About 3 months ago, I decided I had enough of pill taking. I stopped the Effexor cold turkey. what a mistake. for about 3 weeks, i had constant dizziness, headache, irritability, confusion. I feel better now… I would like a new med, but I am hesitant to retry Effexor. It was the only med that worked for me so far (tried paxil and prozac).

If the med worked for you why are you hesitant to take it? c – Hide quoted text — Show quoted text –

Response:

{{{{Gandalf}}}} I’m sorry that you’ve had such a hard time with your med change. I sincerely hope that it all works out for you. BTW – I took Effexor for one day and it made me hallucinate wildly. It was not the drug for me <g -Hilaire typed: – Hide quoted text — Show quoted text -I have been on a brief hiatus here at asdm/m, having major computer problems (screw Microsoft), and getting swept up in medication changes. Specifically what I’m been going through:     Increasing lithium to provide safe margin of error for other changes (getting my level up to 1.0 or thereabouts)     Slowly coming up to 300 mg (standard therapeutic dose) Wellbutrin     Tapering off Effexor, very slowly, last dose on Sunday     Radically increasing Seraquel for sleep (from 6.25 mg for insomnia to 100 mg) I have been feeling like Alice in Wonderland. The reason I’m taking time to post now is to warn people about Effexor withdrawal. Just finished researching Effexor withdrawal on the newsgroups and on the Internet, and once again the most accurate cutting edge information is in these newsgroups (the drug companies had to be dragged kicking and screaming to the recent admission that there is such a thing as antidepressant withdrawal). While the experience is still debilitating me I figure this is a good time to describe my personal experience, strength and hope about this. The first time that I went off Effexor I worked carefully with my doctor and tapered VERY slowly off the antidepressant. I had no symptoms whatsoever going off of it. This second time is EXTREMELY different for me. I was on Lithium both times, using various sleep medications both times. Only real different is that this time we’ve been tapering upwards on the Wellbutrin simultaneous to the taper down on the Effexor. Two very similar scenarios, two *very* different experiences. This time on Effexor, if I forgot a dose that meant that I skipped it that day. I took it, all 225 mg of it, first thing in the morning because of the negative effect that taking it later in the day had on my sleep. If I missed a dose, the next day I would begin to experience extremely uncomfortable withdrawal symptoms by midmorning, painful enough that I would definitely remember to take it that morning (I never skipped 2 days in a row). I joked with my pdoc that I believed that this was a built-in characteristic of Effexor, put into the pharmaceutical nature of Effexor by the drug company so that people would stay hooked to the drug. My doctor was literally in stitches for 5 minutes. Ha, ha. [Now at $75 for a 15 minute appointment that means he owes me...] The withdrawal symptoms were very similar to the ones that I am experiencing now, listed below. Then (after taking 225 mg one day and 0 mg the next) the withdrawal symptoms were more severe than they are at the moment. But they went away completely about 3-4 hours after I took my next 225 mg dose. Now, after reading the anecdotal experience that I compendium-ed in the last post, I know that it may be 3 weeks before Alice can walk through the looking glass back into her living room. I must note that I did not get these dose-skipping withdrawal symptoms the first time I took Effexor. Also, there is really only two differences in the two Effexor regimens – (1) my 188 mg last time was divided into 2 doses (upon awakening and at 1pm), and (2) This time we increased it up to 225 before deciding to try a different AD. One change that I will definitely implement if I ever take Effexor again is to divide it into two daily doses like I did the first time. My pdoc didn’t believe that that would make any difference, and I now am suspicious. The posting that I just made aptly describes the Effexor withdrawal symptoms, sometimes in humorous terms. I’ll try to describe this delight in my own words. * ELECTRIC ZAPS. The worst, by far for me, is the zap. Constant, mild to moderate tingling at the extremities and inside my head. But "tingling" is several orders of magnitude less than this experience. The sensation itself is about halfway between (1) the feeling you have in your foot/hand when it has gone to sleep and now the blood is slowly coming back into the limb [very unpleasant] and (2) someone applying a [pulsing, it isn't steady] electric shock to your skin and 2 inches inward. It is a very "crazy-making" symptom. You have this pulsing-vibrating-nasty shock sensation on various random parts of your anatomy (you never know which part, but for me it is most often extremities: hands/fingers, lips, face, feet, inside my head, and then that wonderful full-body zap. * YOUR HEAD IS A PIN-BALL GAME THAT IS ALWAYS ON TILT. Second worse for me is the tilt. Dizzy, spacey, the world-keeps-tilting-vertigo head. I have been avoiding driving, reading, deciding, walking (that makes it worse), etc. Instead I have been sitting most of the day at the computer, because it takes my mind off this sensation and distracts me more thoroughly than anything else. Watching TV gets very strange and doesn’t work as well. * FORGET THINKING. BETTER FORGET DRIVING TOO. Next in ugliness is *considerable* memory loss and a marginalized ability to do any higher order cognitive processes. Total lack of forest, only this tree, then that tree, and the next tree, and … remind me, what is a tree and why am I looking at it? You would not believe the mistakes that I have been making, and the things I’ve been forgetting. It has been not only embarrassing and aggravating it for me has been very expensive. Just say that a padded room where they serve you 3 squares a day and you can occasionally scream your head off at the medical profession, the pharmaceutical industry, and at whatever moron you used to be that started taking this god-forsaken drug. * GASTROINTESTINAL DISTRESS. Diarrhea, lack of appetite, and all-around weirdness and uncertainty. * GUILT AND ANGER. "I must be imagining this." "It can’t be this bad, it wasn’t last time." "But I did everything right, and everything the pdoc told me to do. It must somehow be my fault." I wanted to document what this particular case study was like. This is very stressful and most of all very VERY bizarre. Also, this is what day… Thursday – Sunday = how many days? After I stopped taking the Effexor, and the symptoms haven’t even slowed down. THIS DRUG IS NOT FOR THE FAINT OF HEART. Yea sure, you might get lucky like I was the first time. But if you look around you’ll see that the odds are remarkably bad. If I had to do it over, given the knowledge that I had at the time, I would do it again even knowing that it would end with this weirdness. But if you don’t particularly do well with weirdness, be forewarned. -Gandalf (who will now go lie down until the screen stops spinning)

Response:

I am not writing all this to scare anyone taking Effexor but I do think it is important that anyone on this drug be aware of some of the potential dangerous side effects.  If I had not gone to my doctor when I did I very easily might not be here today.  Many people can be unaware of blood pressure problems especially if they have not had them in the past.  I think anyone taking this drug should make an effort to get their blood pressure checked occasionally just to be safe. Just one more opinion from someone that has been there, Bonnie

Bonnie: Sorry to hear that the one anti-depressant that started to help had to be eliminated for you. That’s one of the most frustrating things about this better living through chemistry search. I have to echo you comments about the Effexor can raise your blood pressure thing.  it was once of the things my p-doc stressed with me. It din’t raise my blood pressure, but it is one of the known dangers of the med. Best wishes. Maggie

Response:

Hello Gandalf, I can certainly relate to what you describe here about Effexor.  I was on Effexor XR for several months last year.  I tend to be antidepressant-resistant and have always had trouble finding one that would help me at all.  The Effexor was starting to help – I could hardly believe it.  However at about the same time I began having more and more trouble with my high blood pressure.  I have taken blood pressure meds for years and had no trouble maintaining a safe blood pressure until now. I had read that Effexor could cause blood pressure problems in some individuals.  (always a *very* small minority – right?)  Well, in my case it came close to pushing me into heart attack range.  I didn’t notice it at first but day by day I began feeling worse and got to the point that I had a hard time making it up a flight of stairs.  I went to my regular physician and he immediately sent me out for a range of heart tests.  It was not unusual for my blood pressure to be 198/102 and sometimes higher. I went back to my pdoc with all this and he had me do a very fast tapering off of the Effexor.  Lucky me, I was one of the minority that could not take this drug and this was the drug that was finally helping my depression.  Now I had to deal with the withdrawal plus the high blood pressure. I am not writing all this to scare anyone taking Effexor but I do think it is important that anyone on this drug be aware of some of the potential dangerous side effects.  If I had not gone to my doctor when I did I very easily might not be here today.  Many people can be unaware of blood pressure problems especially if they have not had them in the past.  I think anyone taking this drug should make an effort to get their blood pressure checked occasionally just to be safe. Just one more opinion from someone that has been there, Bonnie —

– Hide quoted text — Show quoted text – I have been on a brief hiatus here at asdm/m, having major computer problems (screw Microsoft), and getting swept up in medication changes. Specifically what I’m been going through:      Increasing lithium to provide safe margin of error for other changes (getting my level up to 1.0 or thereabouts)      Slowly coming up to 300 mg (standard therapeutic dose) Wellbutrin      Tapering off Effexor, very slowly, last dose on Sunday      Radically increasing Seraquel for sleep (from 6.25 mg for insomnia to 100 mg) I have been feeling like Alice in Wonderland. The reason I’m taking time to post now is to warn people about Effexor withdrawal.

<moderator snipped quoted material – please refer G.’s original post – Hide quoted text — Show quoted text – THIS DRUG IS NOT FOR THE FAINT OF HEART. Yea sure, you might get lucky like I was the first time. But if you look around you’ll see that the odds are remarkably bad. If I had to do it over, given the knowledge that I had at the time, I would do it again even knowing that it would end with this weirdness. But if you don’t particularly do well with weirdness, be forewarned. -Gandalf (who will now go lie down until the screen stops spinning)

Response:

<Posted and Mailed Hello Gandalf, I can certainly relate to what you describe here about Effexor.  I was on Effexor XR for several months last year.  I tend to be antidepressant-resistant and have always had trouble finding one that would help me at all.  The Effexor was starting to help – I could hardly believe it.

Probably you (like I) are deficient in the norepinephrine neurotransmitter. However at about the same time I began having more and more trouble with my high blood pressure.  I have taken blood pressure meds for years and had no trouble maintaining a safe blood pressure until now.

Are you taking an ACE inhibitor? Hopefully NOT a beta blocker – since they are well known to cause depression! I had read that Effexor could cause blood pressure problems in some individuals.  (Always a *very* small minority – right?)  Well, in my case it came close to pushing me into heart attack range.  I didn’t notice it at first but day by day I began feeling worse and got to the point that I had a hard time making it up a flight of stairs.  I went to my regular physician and he immediately sent me out for a range of heart tests.  It was not unusual for my blood pressure to be 198/102 and sometimes higher.

Blood pressure elevation is a well-known adverse side effect of Effexor. The amount varies from individual-to-individual. Your pdoc should have warned you to be monitoring your pressure. Of course the higher the dose of Effexor, the greater the effect on blood pressure. I went back to my pdoc with all this and he had me do a very fast tapering off of the Effexor.  Lucky me, I was one of the minority that could not take this drug and this was the drug that was finally helping my depression.  Now I had to deal with the withdrawal plus the high blood pressure.

Bonnie, if you were taking lithium to stabilize manic episodes – there would have been a potential alternative for you. That’s assuming that your pdoc is not old-fashioned. There are anti-hypertensive meds called Calcium Channel Blockers (CCBs) that also have anti-manic properties. The most commonly prescribed is verapamil. It would have likely lowered your blood pressure while possibly allowing you to be weaned from lithium. For more information about CCBs please see my article on 25 mood-stabilizing meds. There is another alternative or adjunct to antidepressants. It is called Thyroid Augmentation Therapy. IMO it a highly under appreciated and insufficiently practiced method for treating refractory depression. See my article (Parts 1 and 2) for more details. I am not writing all this to scare anyone taking Effexor but I do think it is important that anyone on this drug be aware of some of the potential dangerous side effects.  If I had not gone to my doctor when I did I very easily might not be here today.  Many people can be unaware of blood pressure problems especially if they have not had them in the past.  I think anyone taking this drug should make an effort to get their blood pressure checked occasionally just to be safe.

Absolutely! I’m glad that you caught it in time – else you could have had a stroke, an aneurysm, or a heart attack. Just one more opinion from someone that has been there, Bonnie

Wishing you all the very best from, James

Response:

 * YOUR HEAD IS A PIN-BALL GAME THAT IS ALWAYS ON TILT. Second worse for me is the tilt. Dizzy, spacey, the world-keeps-tilting-vertigo head. I have been avoiding driving, reading, deciding, walking (that makes it worse), etc. Instead I have been sitting most of the day at the computer, because it takes my mind off this sensation and distracts me more thoroughly than anything else. Watching TV gets very strange and doesn’t work as well.

This happens with Lexapro withdrawal too.  It’s really unpleasant. Molly — There was a young monk of Dundee Who complained that it hurt him to pee,         He said, "Pax vobiscum,         Now why won’t the piss come? I’m afraid I’ve the c-l-a-p."

Response:

<Posted and Emailed

I SEE THAT THE MODERATION SOFTWARE HAS ONCE AGAIN FOULED UP ONE OF MY LENGTHY POSTS!!! APPARENTLY THERE MUST BE A 200-LINE LIMIT BEFORE IT GOES NUTS! <SIGH! So I will try to repeat the corrupted final portion. – Hide quoted text — Show quoted text – * ELECTRIC ZAPS. The worst, by far for me, is the zap. Constant, mild to moderate tingling at the extremities and inside my head. But "tingling" is several orders of magnitude less than this experience. The sensation itself is about halfway between (1) the feeling you have in your foot/hand when it has gone to sleep and now the blood is slowly coming back into the limb [very unpleasant] and (2) someone applying a [pulsing, it isn't steady] electric shock to your skin and 2 inches inward. It is a very "crazy-making" symptom. You have this pulsing-vibrating-nasty shock sensation on various random parts of your anatomy (you never know which part, but for me it is most often extremities: hands/fingers, lips, face, feet, inside my head, and then that wonderful full-body zap. * YOUR HEAD IS A PIN-BALL GAME THAT IS ALWAYS ON TILT. Second worse for me is the tilt. Dizzy, spacey, the world-keeps-tilting-vertigo head. I have been avoiding driving, reading, deciding, walking (that makes it worse), etc. Instead I have been sitting most of the day at the computer, because it takes my mind off this sensation and distracts me more thoroughly than anything else. Watching TV gets very strange and doesn’t work as well. * FORGET THINKING. BETTER FORGET DRIVING TOO. Next in ugliness is *considerable* memory loss and a marginalized ability to do any higher order cognitive processes. Total lack of forest, only this tree, then that tree, and the next tree, and … remind me, what is a tree and why am I looking at it? You would not believe the mistakes that I have been making, and the things I’ve been forgetting. It has been not only embarrassing and aggravating it for me has been very expensive. Just say that a padded room where they serve you 3 squares a day and you can occasionally scream your head off at the medical profession, the pharmaceutical industry, and at whatever moron you used to be that started taking this god-forsaken drug. * GASTROINTESTINAL DISTRESS. Diarrhea, lack of appetite, and all-around weirdness and uncertainty.

All these foregoing symptoms are mentioned as possible discontinuation effects of Effexor XR. See pp. 32-33 of the above cited reference. * GUILT AND ANGER. "I must be imagining this." "It can’t be this bad, it wasn’t last time." "But I did everything right, and everything the pdoc told me to do. It must somehow be my fault."

No, it was HIS fault by telling you take it once per day and telling you to take too much! Your only mistake was skipping a dose. I strongly suggest you use a 7-day see-through pill container to prevent that from reoccurring. I wanted to document what this particular case study was like. This is very stressful and most of all very VERY bizarre. Also, this is what day… Thursday – Sunday = how many days? After I stopped taking the Effexor, and the symptoms haven’t even slowed down. THIS DRUG IS NOT FOR THE FAINT OF HEART.

But your reactions were extreme and I firmly believe worsened by your pdoc’s improper prescribing of Effexor XR for you. Yeah sure, you might get lucky like I was the first time. But if you look around you’ll see that the odds are remarkably bad. If I had to do it over, given the knowledge that I had at the time, I would do it again even knowing that it would end with this weirdness. But if you don’t particularly do well with weirdness, be forewarned.

Why pray tell would you do it over again??? -Gandalf (who will now go lie down until the screen stops spinning)

I do hope that you can get rid of these very disturbing effects! Here’s what you can do if they don’t … break open a capsule of Effexor XR and spread out the "tiny time pills" and divide them roughly into 5 portions. Spread one portion on some applesauce. Swallow – but do NOT chew! See if that doesn’t relieve your symptoms after about 5 hours. If not – repeat taking another portion about every 5 hours. I believe you were ramped off Effexor XR too rapidly and you are suffering the consequences – particularly if you used the standard 2-week discontinuance protocol. Please let me know how you respond and I will try to suggest a more conservative tapering schedule. Wishing you all the very best from, James D. Milton, Ph.D., Sc.D.

Response:

<Posted and Emailed I have been on a brief hiatus here at asdm/m, having major computer problems (screw Microsoft), and getting swept up in medication changes.

Gandalf, I emailed you a month or so ago (after my own MacroSloth problems) – but I guess you never got it. Specifically what I’m been going through: Increasing lithium to provide safe margin of error for other changes (getting my level up to 1.0 or thereabouts) Slowly coming up to 300 mg (standard therapeutic dose) Wellbutrin

I presume this is Wellbutrin SR which is taken twice daily. For more information please see: http://us.gsk.com/products/assets/us_wellbutrinSR.pdf Tapering off Effexor, very slowly, last dose on Sunday

I presume this is Effexor XR which SHOULD be taken twice daily if you don’t want to run into problems! For more information please see: http://www.wyeth.com/content/ShowLabeling.asp?id=100 According to the Prescribing Information, the half-life of venlafaxline is 5 (plus or minus 2) hours and the only active metabolite ODV is 11 (plus or minus 2) hours. Consequently taking Effexor XR only once per day is insufficient from a biochemical standpoint IMO. FYI I take Effexor XR BID. Yes, I fully realize that the Prescribing Information says that you can take Effexor XR only once per day – but some patients will have all sorts of problems if they do so! They are the ones whose metabolisms are much faster than normal. Lets assume that they are 2 standard deviations faster than normal. Then the half-life of venlafaxline for them is only 1 hour and the half-life of ODV is 7 hours. Clearly these individuals should be taking Effexor at least twice per day! The advantage of Effexor XR is that it increases norepinephrine as well as serotonin. SSRIs do nothing for me (other than sending me manic). But I lack sufficient norepinephrine (adrenaline for the brain). If I take too much Effexor XR, I will get bruxism (grinding of the teeth) and tension in my leg muscles. The maximum dose of Effexor XR I can tolerate is 37.5 mg BID. It only stands to reason that it is better to take 2 smaller doses rather than one larger 75 mg dose once per day. Effexor XR is used in treating Depression, Major Depressive Disorder, Generalized Anxiety Disorder (GAD), and Social Anxiety Disorder (Social Phobia). Radically increasing Seroquel for sleep (from 6.25 mg for insomnia to 100 mg)

Surely there are sleeping meds far less potent than the powerful antipsychotic Seroquel with fewer adverse side effects??? Have you ever tried the sleeping aid Sonata? Please see: http://www.sonata.com/pdf/Physician_PI.pdf I have been feeling like Alice in Wonderland. The reason I’m taking time to post now is to warn people about Effexor withdrawal. Just finished researching Effexor withdrawal on the newsgroups and on the Internet, and once again the most accurate cutting edge information is in these newsgroups (the drug companies had to be dragged kicking and screaming to the recent admission that there is such a thing as antidepressant withdrawal). While the experience is still debilitating me I figure this is a good time to describe my personal experience, strength and hope about this.

Many psychotropic meds have severe withdrawal symptoms – Paxil and Klonopin (clonazepam) just to name a couple. Withdrawal symptoms vary considerably from individual to individual. Just as withdrawing from nicotine addiction does. The first time that I went off Effexor, I worked carefully with my doctor and tapered VERY slowly off the antidepressant. I had no symptoms whatsoever going off of it. This second time is EXTREMELY different for me. I was on Lithium both times, using various sleep medications both times. Only real difference is that this time we’ve been tapering upwards on the Wellbutrin simultaneously to the taper down on the Effexor. Two very similar scenarios, two *very* different experiences.

Wellbutrin increases the dopamine neurotransmitter. Some people find that this aids them in quitting smoking. Were you also trying to quit? This time on Effexor if I forgot a dose, that meant that I skipped it that day. I took it, all 225 mg of it, first thing in the morning because of the negative effect that taking it later in the day had on my sleep.

So you were taking Effexor XR only once a day? You must have been finding the norepinephrine to have an excessively stimulating effect on you. Thus it was interfering with your sleep. Clearly you were taking too large of a dose! The doses given in the Prescribing Information are only meant for a rough guideline. A competent pdoc ALWAYS adjusts the dosages according to how his/her patient is FEELING. To blindly follow what the PDR says is the height of INCOMPETENCY! Cookbook recipes don’t work for us! In case pdocs haven’t noticed, we are not COOKIES! We are individual humans with each one of us having individualistic reactions to EVERY psychiatric med! DUH!!! – Hide quoted text — Show quoted text – If I missed a dose, the next day I would begin to experience extremely uncomfortable withdrawal symptoms by midmorning, painful enough that I would definitely remember to take it that morning (I never skipped 2 days in a row). I joked with my pdoc that I believed that this was a built-in characteristic of Effexor, put into the pharmaceutical nature of Effexor by the drug company so that people would stay hooked to the drug. My doctor was literally in stitches for 5 minutes. Ha, ha. [Now at $75 for a 15 minute appointment that means he owes me...] The withdrawal symptoms were very similar to the ones that I am experiencing now, listed below. Then (after taking 225 mg one day and 0 mg the next) the withdrawal symptoms were more severe than they are at the moment. But they went away completely about 3-4 hours after I took my next 225 mg dose. Now, after reading the anecdotal experience that I compendium-ed in the last post, I know that it may be 3 weeks before Alice can walk through the looking glass back into her living room.

Your problems were compounded by: (1) Taking too large of a dose of Effexor XR for YOU. (2) Not taking a smaller total dose and dividing it up into 2 equal daily portions – so that you would not have gotten such a "spike" of norepinephrine into your system. I believe this large spike caused your system to develop a dependency for it and exacerbated your withdrawal symptoms. In essence your pdoc got you "hooked" on this stimulant. I must note that I did not get these dose-skipping withdrawal symptoms the first time I took Effexor. Also, there is really only two differences in the two Effexor regimens – (1) my 188 mg last time was divided into 2 doses (upon awakening and at 1 pm),

Why am I NOT surprised? But you really should strive for 12 hours between doses in order to keep the vanafaxline and ODV levels as nearly constant as feasible. You could take even smaller doses TID (every 8 hours) for even better results. Pharmaceutical companies know that people prefer taking meds once per day rather than twice per day. IMO that is the ONLY reason they recommend Effexor XR for once daily dosing. That would be fine for people with slow metabolisms – but it is NOT fine for those with fast metabolisms! Obviously they put marketing before patient welfare. :0( and (2) This time we increased it up to 225 before deciding to try a different AD. One change that I will definitely implement if I ever take Effexor again is to divide it into two daily doses like I did the first time. My pdoc didn’t believe that would make any difference, and I now am suspicious.

Obviously he knows NOTHING about biochemistry and the effects of short to moderate half-lifes and the effect of metabolism rates! If I were you, I would get a new pdoc. IMO only about half of them are competent to practice. They frequently do more harm than good. :0((( The posting that I just made aptly describes the Effexor withdrawal symptoms, sometimes in humorous terms. I’ll try to describe this delight in my own words. * ELECTRIC ZAPS. The worst, by far for me, is the zap. Constant, mild to moderate tingling at the extremities and inside my head. But "tingling" is several orders of magnitude less than this experience. The sensation itself is about halfway between (1) the feeling you have in your foot/hand when it has gone to sleep and now the blood is slowly coming back into the limb [very

XR and spread out the "tiny time pills" and divide them roughly into 5 portions. Spread one portion on some applesauce. Do NOT chew! See if that doesn't relieve your symptoms after about 5 hours. If not repeat taking another portion about every 5 hours. I believe you were ramped off Effexor XR too rapidly and you are suffering the consequences - particularly if you used the standard 2-week discontinuance schedule. Let me know how you respond and I will try to come up with a more conservative tapering schedule. Wishing you all the very best from, James D. Milton, Ph.D., Sc.D.

Response:

Although we may be on two sides of a fence it sounds like we are both on the same "lovely unadvertised effects of Effexor" fence. That is why I decided to pay the cost of moving to Wellbutrin. Effexor got me 75% cured of depressions, but that last 25% was debilitating. I need better results (particularly the Effexor didn't bring my brain or energy level up to par). There is no way this dance with the pdoc, the illness, and the medications is an easy one (and that leaves out the clueless relatives and spouses). Some people are inexplicably lucky, but it sounds like you and I are not in that group. Right at the moment because of changing 4 drugs at once it is difficult for me to keep up with which new symptom belongs to which new change in medication. Hand tremors from the temporary increase of Lithium, terrible insomnia from the Wellbutrin, Effexor withdrawal, and pea soup for brains from the Seraquel. Or is it ... I wrote this in a thread about all this on asdm: .. this is a situation where we are damned if we do and (in my case) either dead or institutionalized if you don't. Sometimes I have this sort of Star Trek Next Generation fantasy where I imagine what it will be like in the year 2500 when people look back on psychiatric treatment as it is now and laughingly compare it with the neanderthal medical practice of boring holes into people's skulls when they had a migraine. Same kind of thing, in a way. I'm certain that some quack boring a hole in your skull might take your attention both off your migraine and the high fatality rate for that procedure. All this medication hoopla takes our mind off of our suffering by giving us a new kind of suffering. ... -Gandalf (who would like to bore a few holes in pharmacy company CEO skulls to see if the evil demons come out) ...

The reason I'm taking time to post now is to warn people about Effexor withdrawal.

Gandalf: A report from the other side of the forrest. I was starting to cycle down after doing remarkably well.  They told me to up my Effexor. In the last week or so I have felt like a Zombie.  My Goldberg depression score was 65 today, up from 11 last month. I've been sleeping about 16 hours a day, usually in 3 segments.  I missed my therapist appointment on Monday because I didn't realize it was Monday. I  have been sitting around doing nothing. When I started this S%^t a few years ago i was so zombied out that I'd be out of cigarettes for 4-5 days and not even have the will to leave the house to go out and get more. In additon, I cut my effexor down sometime in recent memory because it gave me hand tremor so badly that my handwriting didn't look anything like it used to. I also experience more "senior moments" at a higher does.....you know.......I'm headed somewhere in the house to get or do something and can't remember why. Not thrilled. Maggie.

Response:

Gandalf, you've described my experience withdrawing from Effexor to a tee. I take 225 mg. in 3 time release capsules in the morning, roughly the same time every morning.  If I forget, I'm light-headed by the next morning and getting queasy, and that's when I realize I must've forgotten them the day before.  Within about an hour to 3 hrs. after taking them that second day, I'm feeling fine.  A couple times I've thought I had another bottle in the cabinet, only to realize I'm indeed finishing up the third bottle--I get them in 3 month supply--and once I was without any for four days.  I kept thinking I'd get better, only to find that the next day was even worse. Visual distortion is something very peculiar to add to the list; rectangular tables slowly changing into diamond-shaped tables, or maybe round, and who cares anyway because the floor is moving and the walls are waving in slow motion and I'm going to throw up.  I was ready for the hospital by the time I was able to send a friend to my doctor for some samples.  Then I took my 3 caps, was no better by late afternoon, and took another dose to boost my level.  By that night my guts had stopped churning and the room was beginning to stay more still and I could actually lift my head without throwing up. You're right, it's hideous.  My depression is too immobilizing when I'm not on them, though, and I feel good when I take them--along w/ some coffee in the morning--so I'm going to just be sure I'm never EVER without that drug! It is a wonder drug for me. Good to hear from you, Gandalf! Kathy F. p.s.  would you send us a link to the site you've found concerning ad withdrawal?

- Hide quoted text -- Show quoted text - I have been on a brief hiatus here at asdm/m, having major computer problems (screw Microsoft), and getting swept up in medication changes. Specifically what I'm been going through:      Increasing lithium to provide safe margin of error for other changes (getting my level up to 1.0 or thereabouts)      Slowly coming up to 300 mg (standard therapeutic dose) Wellbutrin      Tapering off Effexor, very slowly, last dose on Sunday      Radically increasing Seraquel for sleep (from 6.25 mg for insomnia to 100 mg) I have been feeling like Alice in Wonderland. The reason I'm taking time to post now is to warn people about Effexor withdrawal. Just finished researching Effexor withdrawal on the newsgroups and on the Internet, and once again the most accurate cutting edge information is in these newsgroups (the drug companies had to be dragged kicking and screaming to the recent admission that there is such a thing as antidepressant withdrawal). While the experience is still debilitating me I figure this is a good time to describe my personal experience, strength and hope about this. The first time that I went off Effexor I worked carefully with my doctor and tapered VERY slowly off the antidepressant. I had no symptoms whatsoever going off of it. This second time is EXTREMELY different for me. I was on Lithium both times, using various sleep medications both times. Only real different is that this time we've been tapering upwards on the Wellbutrin simultaneous to the taper down on the Effexor. Two very similar scenarios, two *very* different experiences. This time on Effexor, if I forgot a dose that meant that I skipped it that day. I took it, all 225 mg of it, first thing in the morning because of the negative effect that taking it later in the day had on my sleep. If I missed a dose, the next day I would begin to experience extremely uncomfortable withdrawal symptoms by midmorning, painful enough that I would definitely remember to take it that morning (I never skipped 2 days in a row). I joked with my pdoc that I believed that this was a built-in characteristic of Effexor, put into the pharmaceutical nature of Effexor by the drug company so that people would stay hooked to the drug. My doctor was literally in stitches for 5 minutes. Ha, ha. [Now at $75 for a 15 minute appointment that means he owes me...] The withdrawal symptoms were very similar to the ones that I am experiencing now, listed below. Then (after taking 225 mg one day and 0 mg the next) the withdrawal symptoms were more severe than they are at the moment. But they went away completely about 3-4 hours after I took my next 225 mg dose. Now, after reading the anecdotal experience that I compendium-ed in the last post, I know that it may be 3 weeks before Alice can walk through the looking glass back into her living room. I must note that I did not get these dose-skipping withdrawal symptoms the first time I took Effexor. Also, there is really only two differences in the two Effexor regimens – (1) my 188 mg last time was divided into 2 doses (upon awakening and at 1pm), and (2) This time we increased it up to 225 before deciding to try a different AD. One change that I will definitely implement if I ever take Effexor again is to divide it into two daily doses like I did the first time. My pdoc didn’t believe that that would make any difference, and I now am suspicious. The posting that I just made aptly describes the Effexor withdrawal symptoms, sometimes in humorous terms. I’ll try to describe this delight in my own words.  * ELECTRIC ZAPS. The worst, by far for me, is the zap. Constant, mild to moderate tingling at the extremities and inside my head. But "tingling" is several orders of magnitude less than this experience. The sensation itself is about halfway between (1) the feeling you have in your foot/hand when it has gone to sleep and now the blood is slowly coming back into the limb [very unpleasant] and (2) someone applying a [pulsing, it isn't steady] electric shock to your skin and 2 inches inward. It is a very "crazy-making" symptom. You have this pulsing-vibrating-nasty shock sensation on various random parts of your anatomy (you never know which part, but for me it is most often extremities: hands/fingers, lips, face, feet, inside my head, and then that wonderful full-body zap.  * YOUR HEAD IS A PIN-BALL GAME THAT IS ALWAYS ON TILT. Second worse for me is the tilt. Dizzy, spacey, the world-keeps-tilting-vertigo head. I have been avoiding driving, reading, deciding, walking (that makes it worse), etc. Instead I have been sitting most of the day at the computer, because it takes my mind off this sensation and distracts me more thoroughly than anything else. Watching TV gets very strange and doesn’t work as well.  * FORGET THINKING. BETTER FORGET DRIVING TOO. Next in ugliness is *considerable* memory loss and a marginalized ability to do any higher order cognitive processes. Total lack of forest, only this tree, then that tree, and the next tree, and … remind me, what is a tree and why am I looking at it? You would not believe the mistakes that I have been making, and the things I’ve been forgetting. It has been not only embarrassing and aggravating it for me has been very expensive. Just say that a padded room where they serve you 3 squares a day and you can occasionally scream your head off at the medical profession, the pharmaceutical industry, and at whatever moron you used to be that started taking this god-forsaken drug.  * GASTROINTESTINAL DISTRESS. Diarrhea, lack of appetite, and all-around weirdness and uncertainty.  * GUILT AND ANGER. "I must be imagining this." "It can’t be this bad, it wasn’t last time." "But I did everything right, and everything the pdoc told me to do. It must somehow be my fault." I wanted to document what this particular case study was like. This is very stressful and most of all very VERY bizarre. Also, this is what day… Thursday – Sunday = how many days? After I stopped taking the Effexor, and the symptoms haven’t even slowed down. THIS DRUG IS NOT FOR THE FAINT OF HEART. Yea sure, you might get lucky like I was the first time. But if you look around you’ll see that the odds are remarkably bad. If I had to do it over, given the knowledge that I had at the time, I would do it again even knowing that it would end with this weirdness. But if you don’t particularly do well with weirdness, be forewarned. -Gandalf (who will now go lie down until the screen stops spinning)

Response:

I have been on a brief hiatus here at asdm/m, having major computer problems (screw Microsoft), and getting swept up in medication changes. Specifically what I’m been going through:      Increasing lithium to provide safe margin of error for other changes (getting my level up to 1.0 or thereabouts)      Slowly coming up to 300 mg (standard therapeutic dose) Wellbutrin      Tapering off Effexor, very slowly, last dose on Sunday      Radically increasing Seraquel for sleep (from 6.25 mg for insomnia to 100 mg) I have been feeling like Alice in Wonderland. The reason I’m taking time to post now is to warn people about Effexor withdrawal. Just finished researching Effexor withdrawal on the newsgroups and on the Internet, and once again the most accurate cutting edge information is in these newsgroups (the drug companies had to be dragged kicking and screaming to the recent admission that there is such a thing as antidepressant withdrawal). While the experience is still debilitating me I figure this is a good time to describe my personal experience, strength and hope about this. The first time that I went off Effexor I worked carefully with my doctor and tapered VERY slowly off the antidepressant. I had no symptoms whatsoever going off of it. This second time is EXTREMELY different for me. I was on Lithium both times, using various sleep medications both times. Only real different is that this time we’ve been tapering upwards on the Wellbutrin simultaneous to the taper down on the Effexor. Two very similar scenarios, two *very* different experiences. This time on Effexor, if I forgot a dose that meant that I skipped it that day. I took it, all 225 mg of it, first thing in the morning because of the negative effect that taking it later in the day had on my sleep. If I missed a dose, the next day I would begin to experience extremely uncomfortable withdrawal symptoms by midmorning, painful enough that I would definitely remember to take it that morning (I never skipped 2 days in a row). I joked with my pdoc that I believed that this was a built-in characteristic of Effexor, put into the pharmaceutical nature of Effexor by the drug company so that people would stay hooked to the drug. My doctor was literally in stitches for 5 minutes. Ha, ha. [Now at $75 for a 15 minute appointment that means he owes me...] The withdrawal symptoms were very similar to the ones that I am experiencing now, listed below. Then (after taking 225 mg one day and 0 mg the next) the withdrawal symptoms were more severe than they are at the moment. But they went away completely about 3-4 hours after I took my next 225 mg dose. Now, after reading the anecdotal experience that I compendium-ed in the last post, I know that it may be 3 weeks before Alice can walk through the looking glass back into her living room. I must note that I did not get these dose-skipping withdrawal symptoms the first time I took Effexor. Also, there is really only two differences in the two Effexor regimens – (1) my 188 mg last time was divided into 2 doses (upon awakening and at 1pm), and (2) This time we increased it up to 225 before deciding to try a different AD. One change that I will definitely implement if I ever take Effexor again is to divide it into two daily doses like I did the first time. My pdoc didn’t believe that that would make any difference, and I now am suspicious. The posting that I just made aptly describes the Effexor withdrawal symptoms, sometimes in humorous terms. I’ll try to describe this delight in my own words.  * ELECTRIC ZAPS. The worst, by far for me, is the zap. Constant, mild to moderate tingling at the extremities and inside my head. But "tingling" is several orders of magnitude less than this experience. The sensation itself is about halfway between (1) the feeling you have in your foot/hand when it has gone to sleep and now the blood is slowly coming back into the limb [very unpleasant] and (2) someone applying a [pulsing, it isn't steady] electric shock to your skin and 2 inches inward. It is a very "crazy-making" symptom. You have this pulsing-vibrating-nasty shock sensation on various random parts of your anatomy (you never know which part, but for me it is most often extremities: hands/fingers, lips, face, feet, inside my head, and then that wonderful full-body zap.  * YOUR HEAD IS A PIN-BALL GAME THAT IS ALWAYS ON TILT. Second worse for me is the tilt. Dizzy, spacey, the world-keeps-tilting-vertigo head. I have been avoiding driving, reading, deciding, walking (that makes it worse), etc. Instead I have been sitting most of the day at the computer, because it takes my mind off this sensation and distracts me more thoroughly than anything else. Watching TV gets very strange and doesn’t work as well.  * FORGET THINKING. BETTER FORGET DRIVING TOO. Next in ugliness is *considerable* memory loss and a marginalized ability to do any higher order cognitive processes. Total lack of forest, only this tree, then that tree, and the next tree, and … remind me, what is a tree and why am I looking at it? You would not believe the mistakes that I have been making, and the things I’ve been forgetting. It has been not only embarrassing and aggravating it for me has been very expensive. Just say that a padded room where they serve you 3 squares a day and you can occasionally scream your head off at the medical profession, the pharmaceutical industry, and at whatever moron you used to be that started taking this god-forsaken drug.  * GASTROINTESTINAL DISTRESS. Diarrhea, lack of appetite, and all-around weirdness and uncertainty.  * GUILT AND ANGER. "I must be imagining this." "It can’t be this bad, it wasn’t last time." "But I did everything right, and everything the pdoc told me to do. It must somehow be my fault." I wanted to document what this particular case study was like. This is very stressful and most of all very VERY bizarre. Also, this is what day… Thursday – Sunday = how many days? After I stopped taking the Effexor, and the symptoms haven’t even slowed down. THIS DRUG IS NOT FOR THE FAINT OF HEART. Yea sure, you might get lucky like I was the first time. But if you look around you’ll see that the odds are remarkably bad. If I had to do it over, given the knowledge that I had at the time, I would do it again even knowing that it would end with this weirdness. But if you don’t particularly do well with weirdness, be forewarned. -Gandalf (who will now go lie down until the screen stops spinning)

Response:

The reason I’m taking time to post now is to warn people about Effexor withdrawal.

Gandalf: A report from the other side of the forrest. I was starting to cycle down after doing remarkably well.  They told me to up my Effexor. In the last week or so I have felt like a Zombie.  My Goldberg depression score was 65 today, up from 11 last month. I’ve been sleeping about 16 hours a day, usually in 3 segments.  I missed my therapist appointment on Monday because I didn’t realize it was Monday. I  have been sitting around doing nothing. When I started this S%^t a few years ago i was so zombied out that I’d be out of cigarettes for 4-5 days and not even have the will to leave the house to go out and get more. In additon, I cut my effexor down sometime in recent memory because it gave me hand tremor so badly that my handwriting didn’t look anything like it used to. I also experience more "senior moments" at a higher does…..you know…….I’m headed somewhere in the house to get or do something and can’t remember why. Not thrilled. Maggie.

Response:

Alternatives To Atkins?

Question:

POTATOES NOT PROZAC does a wonderful explanation of the serotonin/carbs involvement! — read and post daily, it works! rosie Never apologize for showing feeling. When you do so, you apologize for truth. – Hide quoted text — Show quoted text –     I may do one more Induction experiment to test my hypothesis, but I am pretty sure I am going off Atkins, or at least cheating on it a whole bunch. It’s not that it hasn’t cut my weight or made me feel good, physically. But I am convinced low-carb is playing havoc with my serotonin. I am prone to depression, and need to be on SSRI anti-depressants. Every time I cut all my carbs out I start to feel really bad. My doc said I was probably feeling bad because I am unemployed, but last time I was on induction I was having SSRI withdrawal effects even though I was taking 80mg a day of my med. I don’t really trust a psychiatric resident to know about nutrition anyway. The only book I have seen mention low-serotonin syndrome is Dr. Schwarzbein’s. Problem is I still want to do low carb. Other than keeping myself sane dropping my spare 18 wheeler tire is my main concern. So I need to find a diet that is low carb, but not too low carb. Can somebody help me with a few questions     1.I am thinking of doing Schwarzbein’s or the South Beach diet. Any good or bad experiences, particularly as far as weight loss?     2. When you do a diet that goes higher than Atkins in carbs do you have to begin moderating your fat intake?     3. Does anybody do Atkins, but eat more than recommended carbs? Do you still lose weight? Wish me luck. Low seretonin has sent me back to milkshakes and non-diet soda and I need to start being concerned about my diet again. Thanks. — The saddest thing in the world is the Internet newsgroup regular

Response:

Can you talk to your prescribing MD about increasing the dosage of your SSRI?  Heavy carbs can boost serotonin, but it seems that upping your SSRI and staying low-carb would serve you in many ways. Priscilla, low-carbing and on Zoloft

Now that’s interesting. I’ve been on Zoloft too, but as I was down to a very low dose and feeling great I decided to go off it entirely while starting Atkins, as he says that SSRIs can be a cause of failing to lose. I gather this hasn’t been your experience. Can you elaborate a bit on whether or not you’ve had any problems losing? I’d like to know whether I can still take Zoloft if I need to, and keep on Atkins. mx Max Atkins since June 4 2003 196/?/145

Response:

Can you talk to your prescribing MD about increasing the dosage of your SSRI?  Heavy carbs can boost serotonin, but it seems that upping your SSRI and staying low-carb would serve you in many ways. Priscilla, low-carbing and on Zoloft Now that’s interesting. I’ve been on Zoloft too, but as I was down to a very low dose and feeling great I decided to go off it entirely while starting Atkins, as he says that SSRIs can be a cause of failing to lose. I gather this hasn’t been your experience. Can you elaborate a bit on whether or not you’ve had any problems losing? I’d like to know whether I can still take Zoloft if I need to, and keep on Atkins.

I’m not on Atkins, and weight loss isn’t high on my list of goals.  I’m a type 2 diabetic, and I low-carb to keep my blood glucose low.  I "eat to my meter," and when my meter says eating some carbs isn’t bothering me, I feel no compunction to not eat them.  However, before I got my meter, when I was being quite strict about my low-carbing, I was dropping weight.  I went down a size in jeans before I got my meter and started eating to it. Priscilla — Did you know that green beans are the new noodles?

Response:

Hate to state the obvious, but increase your carb intake.  Just increase your physical activity, as well.  You probably won’t notice a difference and you’ll probably also feel better with all those endorphines rushing through your system!  Good luck–feeling bad is the pits…we’re all behind you. – Hide quoted text — Show quoted text – I may do one more Induction experiment to test my hypothesis, but I am pretty sure I am going off Atkins, or at least cheating on it a whole bunch. It’s not that it hasn’t cut my weight or made me feel good, physically. But I am convinced low-carb is playing havoc with my serotonin. I am prone to depression, and need to be on SSRI anti-depressants. Every time I cut all my carbs out I start to feel really bad. My doc said I was probably feeling bad because I am unemployed, but last time I was on induction I was having SSRI withdrawal effects even though I was taking 80mg a day of my med. I don’t really trust a psychiatric resident to know about nutrition anyway. The only book I have seen mention low-serotonin syndrome is Dr. Schwarzbein’s. Problem is I still want to do low carb. Other than keeping myself sane dropping my spare 18 wheeler tire is my main concern. So I need to find a diet that is low carb, but not too low carb. Can somebody help me with a few questions     1.I am thinking of doing Schwarzbein’s or the South Beach diet. Any good or bad experiences, particularly as far as weight loss?     2. When you do a diet that goes higher than Atkins in carbs do you have to begin moderating your fat intake?     3. Does anybody do Atkins, but eat more than recommended carbs? Do you still lose weight? Wish me luck. Low seretonin has sent me back to milkshakes and non-diet soda and I need to start being concerned about my diet again. Thanks.

Response:

    I was actually more diligent on induction then follow-up. I’d do induction(no more than 20 carbs) for about 4 weeks, but then my will power gave out, I’d cheat, and then go back on induction. I did intake caffeine since I am kind of a soda addict. Diet sodas only though. I may try the maintenance program straight away this time. Thanks.

There’s part of your problem. If you find induction too restrictive and end up throwing in the towel then you should advance to OWL phase after 2 weeks. It’s a common misconception that you’ll continue to lose at induction rates if you stay on induction. You won’t. Most of that initial whoosh is water weight. Once you lose that your weight loss should slow down. In fact many people find they have a 2-3 week pause in loss after induction. This is common and won’t be solved by continuing to restrict carbs to induction levels. Unless you’re perfectly happy staying that low in carbs you really should start adding back to find your CCL. — Jeri 265/197/120 Atkins since 11/5/01 "Whether you think you can or think you can’t, you’re right."

Response:

<<darkjourney wrote

Amalgam Complaints Need Psychiatric Treatment

Question:

Psychother Psychosom 2002 Jul-Aug;71(4):223-32 Psychological, allergic, and toxicological aspects of patients with amalgam-related complaints. Gottwald B, Kupfer J, Traenckner I, Ganss C, Gieler U. Department of Medical Psychology, University of Giessen, Germany. Background: To deepen the understanding of the numerous unspecific complaints which are related to the dental material amalgam both in patients and physicians, an interdisciplinary case-control study regarding toxicological, allergic, psychological and psychiatric aspects was conducted. Forty patients with amalgam-associated complaints were compared to a well-matched group of 40 amalgam bearers without complaints. Methods: Patients and controls underwent a dental examination, which included recording of the quantity, surface area and quality of amalgam fillings, a determination of the mercury load in blood and urine, an allergy examination including patch testing with amalgam and a psychometric assessment with questionnaires noting coping strategies (ABI-UMW-P), interpersonal problems (Inventory of Interpersonal Problems) and self-consciousness (SAM), the NEO Five-Factor Inventory, Symptom Checklist-90-R, Beck Depression Inventory and a screening instrument for somatoform disorders. Results: Patients and controls did not differ with respect to mercury concentrations in body fluids. Only 1 patient was found to have a positive amalgam patch test; various other allergies could be determined in 28% of patients (n = 11). Patients had higher levels of psychic distress, a higher incidence of depression and somatization disorders as well as different styles of coping with anxiety compared to controls. Conclusions: No indication for mercury intoxication or amalgam allergy as a cause of the patients’ complaints could be found. The theory of amalgam-related complaints as an expression of underlying psychic problems is supported. Treatment should focus on somatization and changing coping and attribution styles.

Response:

Reposted on behalf of another poster, who’s reply somehow ended up in "alt test" Newsgroups: alt.test Department of Medical Psychology

             *Physchobabble* The entity *somatization disorder* is psychobabble and is obtained from the DSM-IV manual and is used by psychologists and psychiatrists.MD’s have borrowed the entity for their own uses.  It is a spurious diagnosis with no laboratory indicators. http://home.online.no/~reiersol/friberg.htm What **toxicologists and medical researchers** say about amalgam A 1995 symposium report sums up the scientific controversy over amalgam in this way: The controversy concerning the safety of dental amalgam has intensified in recent years. While proponents continue to reaffirm its safety by pointing to the millions of dental cavities that are annually being filled with amalgam without (apparently) causing any ill effects, opponents are demanding the immediate ban of dental amalgam, citing studies which demonstrate that substantial amounts of mercury from such fillings are released and absorbed, causing mercury to accumulate in organs and tissues, in pregnant women even in the fetus. Although the health consequences of the accumulation of mercury in the human body are not yet fully understood, mercury is receiving increasing attention as an immunotoxic element and for this reason it is suspected to play a role in the development of a variety of chronic diseases. Proponents of amalgam consider these claims to be largely unproven. They also point out that many of the symptoms attributed to chronic mercury exposure from amalgam fillings are too non-specific to be relevant, and they further argue that, in the absence of a suitable low-cost replacement, a ban of amalgam would have serious practical and fiscal consequences. However, in veiw of the mounting opposition against the use of amalgam, dental professionals in many countries are increasingly revising their previous positions and public officials are preparing regulations for the restricted use and eventual ban of all amalgam-based dental materials. [1] The following quotes are mostly from researchers who have contributed significantly to current knowledge about the health risks of amalgam. All of them are skeptical or negative to amalgam. There are many sources for the opposite point of view, but the vast majority of them are from dental organizations or researchers. These have done little relevant research of their own, perhaps thinking that criticizing the work of others is sufficient. One pro-amalgam source that is not dentistry-based is the 1994 report from an expert group appointed by the Swedish National Board of Health and Welfare. I find this document strongly biased in its coverage of the scientific literature. Unfortunately, you must be able to read Swedish to form an independent opinion on that, since only the summary has been translated into English. Lars Friberg Lars Friberg is the author of the 1991 WHO report on inorganic mercury and has contributed to the standard texts on metal toxicology. In the concluding remarks to the above-mentioned symposium, he says: My own conclusion is that already in individuals with bruxism, which is common in the population, exposure may well be compared with industrial exposure that has given rise to effects. Furthermore, despite negative results in epidemiological studies, the statistical power is not high enough to exclude the occurrence of effects in a few percent of the population at still lower exposure levels. As amalgam is used so widely already, an effect in a few percent of the exposed population would mean that very large population groups could be affected. The evidence from experimental and human studies at higher exposure levels clearly indicates that mercury from the toxicological point of view is an unsuitable element to use in dentistry. It is my opinion that it is prudent to conclude that mercury from dental amalgam is not safe to use for everyone.[2] Mats Berlin Mats Berlin is also one of the "old guard" of metal toxicology. His publications are quoted no less than 5 times in Casarett and Doull’s Toxicology. In a 1992 article, although he still supports the continued use of amalgam, he adds: Such a decision [to continue using amalgam] should not be accompanied by a smoke screen in the form of a general statement that amalgam is safe, which is an untruth that only demonstrates deficient knowledge of fundamental principles of environmental medicine… [3] Recent risk assessments A risk assessment by G. Mark Richardson and Margaret Allan was recently published in a peer-reviewed risk assessment journal [4]. The authors calculate a Tolerable Daily Intake (TDI) for mercury vapor, and find that it corresponds to two (2) or (4) fillings using either of two different exposure calculations. They also compare the two models to exposure limits from risk assessments by the ATSDR (Agency for Toxic Substances and Disease Registry a branch of the US Public Health service) and the USEPA. This works out to (0) mercury fillings for the USPHS Standard, nine (9) and eleven (11) mercury fillings for the USEPA Standard. They conclude: It is apparent, therefore, that there is uncertainty in what constitutes a level of Hg vapor exposure that is acceptable, tolerable, or of minimal risk. Subsequently, there is uncertainty in the precise number of amalgam-filled teeth that can be considered acceptable, tolerable, or of minimal risk. However, it is also apparent that the continued unconditional and unlimited use of amalgam as a dental restorative material, the placing of up to 25 amalgam fillings in one individual, is not supported by the available risk information. Lorscheider, Vimy and Summers Three medical researchers, Lorscheider, Vimy and Summers, were asked by the FASEB Journal to review recent scientific findings on amalgam. The FASEB Journal is one of the world’s most prestigious scientific publications.They state that "research evidence does not support the notion of amalgam safety", and conclude: The experimental evidence indicates that amalgam Hg has the potential to induce cell or organ patophysiology. At the very least, the traditional dental paradigm, that amalgam is a chemically stable tooth restorative material and that the release of Hg [mercury] from this material is insignificant, is without foundation. [5] 1) Friberg LT, Schrauzer GN. Preface. In: Friberg LT, Schrauzer GN. Status Quo and perspectives of amalgam and other dental materials. International symposium proceedings. G. Thieme Verlag Stuttgart, 1995. 2) Friberg LT. Concluding remarks. In: Friberg LT, Schrauzer GN. Status Quo and perspectives of amalgam and other dental materials. International symposium proceedings. G. Thieme Verlag Stuttgart, 1995: 134-136. 3) Richardson GM, Allan M: A Monte Carlo Assessment of Mercury Exposure and Risks from Dental Amalgam. Human and Ecological Risk Assessment 1996; 2 (4): 709-761. 4) Berlin M:

Jaw pain with Celexa?

Question:

Hi group, My dose of Celexa was raised from 20mg per day to 40 and subsequently got this pain in my jaw/TMJ joint. It felt like my teeth weren’t fitting together properly. I went back to 20mg and it went away. Anyone else had this?? Yep, It felt like my molars were swelling and I would grind my teeth. This went away after two months.  I had other odd side effects as well. Bruxism is teeth grinding, my rats do it a lot :-)

IS THAT WHAT THAT IS!! Periodically I thought I threw my jaw out of alignment and I would spend countless hours trying to close my back teeth properly and just get more frustrated. Damn! I don’t think it’s a "drug" thing though, I think that’s an "anxiety" thing

Response:

Hi group, My dose of Celexa was raised from 20mg per day to 40 and subsequently got this pain in my jaw/TMJ joint. It felt like my teeth weren’t fitting together properly. I went back to 20mg and it went away. Anyone else had this??

Yep, It felt like my molars were swelling and I would grind my teeth. This went away after two months.  I had other odd side effects as well. Bruxism is teeth grinding, my rats do it a lot :-)

Response:

Hi group, My dose of Celexa was raised from 20mg per day to 40 and subsequently got this pain in my jaw/TMJ joint. It felt like my teeth weren’t fitting together properly. I went back to 20mg and it went away. Anyone else had this?? Thanks, Russ

Response:

- Hide quoted text — Show quoted text – Hi group, My dose of Celexa was raised from 20mg per day to 40 and subsequently got this pain in my jaw/TMJ joint. It felt like my teeth weren’t fitting together properly. I went back to 20mg and it went away. Anyone else had this?? Thanks, Russ Hi group, My dose of Celexa was raised from 20mg per day to 40 and subsequently got this pain in my jaw/TMJ joint. It felt like my teeth weren’t fitting together properly. I went back to 20mg and it went away. Anyone else had this?? Thanks, Russ

it’s common Russ, the drug hits some 5ht receptors in most muscles inclusive of the mandible and cranium-bruxism is common as well LM

Response:

- Hide quoted text — Show quoted text – X-no-archive: yes : : : it’s common Russ, the drug hits some 5ht receptors in most muscles inclusive of : the mandible and cranium-bruxism is common as well : : LM Care to share in layman’s terms?? — (`*

New to migraines – have Axert samples

Question:

– Hide quoted text — Show quoted text – Dr. Jim Boyd, a long-term headache sufferer himself, found that a large number of migraines are triggered by bruxism, or clenching of teeth.  He devised an appliance called a Nociceptive Trigeminal Inhibitor-tension suppression system (NTI-tss) that is fitted over the upper incisors at night and triggers a reflex that prevents forceful clenching It’s strange that you should say that because I have one of the worst, most hard to break habits in the world.  I love to chew my inner gum, and constantly grind it between my teeth.  I notice that when I’m reading, I do it constantly.  I don’t think I grind my teeth when I sleep, though. For the most part, the headaches seem to appear in the evenings hours before sleep.  I’m going to stay away from brussel sprouts for awhile and see what happens.

This is just not right at all. That’s the *second* time you’ve disparaged brussel sprouts!!!! ;-) I’m really glad the Axert seems to be helping you. How lucky you will be if you’ve found a good med that works well for you right from the jump. I’m glad for you. Cyndi

Response:

Dr. Jim Boyd, a long-term headache sufferer himself, found that a large number of migraines are triggered by bruxism, or clenching of teeth.  He devised an appliance called a Nociceptive Trigeminal Inhibitor-tension suppression system (NTI-tss) that is fitted over the upper incisors at night and triggers a reflex that prevents forceful clenching

It’s strange that you should say that because I have one of the worst, most hard to break habits in the world.  I love to chew my inner gum, and constantly grind it between my teeth.  I notice that when I’m reading, I do it constantly.  I don’t think I grind my teeth when I sleep, though. For the most part, the headaches seem to appear in the evenings hours before sleep.  I’m going to stay away from brussel sprouts for awhile and see what happens.  

Response:

– Hide quoted text — Show quoted text – I thought I was suffering from sinus headaches since I have a deviated septum, but my doctor seems to think they’re migraines.  This started several weeks ago.  Either I feel them coming on an hour before, or I wake up with a pounding headache at 1:30 AM and can’t get back to sleep. It’s always the left temple, too.  The next morning I can still feel the remnants of the headache. I was taking Tylenol sinus (which has 1000 mg of Acetominophen anyway)before I went to the doctor and he gave me some samples of Axert.  The Tylenol would reduce the headache to a dull pain after about 90 minutes.  It’s now an hour after taking Axert, and I have a slightly stronger pain than with the Tylenol, but not the brutal pain of my past headaches. What I’ve noticed tonight is that the headache came on soon after I finished having chicken and brussel sprouts.  I’m wondering if one is the trigger. If I had to guess (and I’m hoping, too) I would say it’s the brussel sprouts. My doctor wants me to go in for an MRI if the headaches don’t subside after taking Axert.  So far it seems Tylenol is better!  I’m going to take a 2nd Axert in another hour.

Dr. Jim Boyd, a long-term headache sufferer himself, found that a large number of migraines are triggered by bruxism, or clenching of teeth.  He devised an appliance called a Nociceptive Trigeminal Inhibitor-tension suppression system (NTI-tss) that is fitted over the upper incisors at night and triggers a reflex that prevents forceful clenching.  See: http://www.nti-tss.com/.  The nighttime onset and temporal location suggests that might be especially worth investigating for you.

Response:

My doctor wants me to go in for an MRI if the headaches don’t subside after taking Axert.  So far it seems Tylenol is better!  I’m going to take a 2nd Axert in another hour.

I’ve just changed my opinion.  Axert took about 80 minutes to work and once it did, the headache was gone!  Perhaps I caught it in time.  I took it 20 minutes after I had the symptoms.  I didn’t even need to take the 2nd pill.

Response:

Great!  Keep us posted how it goes from here. Ginnie – Hide quoted text — Show quoted text – My doctor wants me to go in for an MRI if the headaches don’t subside after taking Axert.  So far it seems Tylenol is better!  I’m going to take a 2nd Axert in another hour. I’ve just changed my opinion.  Axert took about 80 minutes to work and once it did, the headache was gone!  Perhaps I caught it in time.  I took it 20 minutes after I had the symptoms.  I didn’t even need to take the 2nd pill.

Response:

I thought I was suffering from sinus headaches since I have a deviated septum, but my doctor seems to think they’re migraines.  This started several weeks ago.  Either I feel them coming on an hour before, or I wake up with a pounding headache at 1:30 AM and can’t get back to sleep. It’s always the left temple, too.  The next morning I can still feel the remnants of the headache.   I was taking Tylenol sinus (which has 1000 mg of Acetominophen anyway)before I went to the doctor and he gave me some samples of Axert.  The Tylenol would reduce the headache to a dull pain after about 90 minutes.  It’s now an hour after taking Axert, and I have a slightly stronger pain than with the Tylenol, but not the brutal pain of my past headaches. What I’ve noticed tonight is that the headache came on soon after I finished having chicken and brussel sprouts.  I’m wondering if one is the trigger. If I had to guess (and I’m hoping, too) I would say it’s the brussel sprouts. My doctor wants me to go in for an MRI if the headaches don’t subside after taking Axert.  So far it seems Tylenol is better!  I’m going to take a 2nd Axert in another hour.

Response:

Now what? (Test results)

Question:

I don’t know what to make of my test results. My sleep specialist is specifically a sleep specialist, not a psychiatrist, GP, cardiologist, neurologist, or whatever. He was pretty confident from my symptoms that I have narcolepsy. I had a PSG and MSLT December 29 and 30 like it’s supposed to be done. I lost my job 3 weeks ago and have submitted all of the forms for Ontario and Canadian disability pensions, and EI sickness benefits. I have been waiting on these results so I can submit medical reports. Today I got my results, delivered to me by my doctor and one of his colleagues who appears to have a background in neurology. According to my test results, I am perfectly normal. There is no explanation why I am so sleepy. We listed off a number of conditions (thyroid, chronic fatigue, etc.) that could cause similar symptoms, but nothing fits. A couple of months ago I had my GP check off every blood test on the chart, and everything came back normal. The doctor suggested I might be depressed, but I have had depression many times (sometimes very severe) and right now, I can’t say I feel depressed, only frustrated and worried. I asked if it could be early signs of MS, and they said it’s unlikely but possible. I have no apnea. I have been given a sample of Alertec 100mg, and have been instructed to take one pill every morning for 10 days. They have no idea what it will do to me, so if I have a bad reaction I am to stop and phone them right away. If there is no bad reaction, I am to phone them in a week. I am supposed to see the head of the clinic, Dr. Moldofsky, as soon as possible, and they will phone me if he has a cancellation. If necessary, I will go through any tests the doctors order. I may consult a neurologist about MS if nothing is found in the next few weeks, as my mother has it and we suspect her mother and grandmother also had it. My experience is currently on the NG web site under Stories/Narcolepsy. It describes my struggle with EDS. I am posting my test results here for your information. If anyone has any ideas that I could ask the doctor about, I would like to hear them! I will keep you posted if I hear anything new. Thanks. – Ali :-/ Lights Out: 22:55:54 Lights On: 07:35:28 Total Recording Time: 519.6 min Total Sleep Period Time: 486.4 min Total Sleep Time (TST): 474.0 min Sleep Latency: 33.1 min Number of REM Periods: 4 Number of Stage Shifts: 59 Number of Awakenings: 9 Sleep Efficiency: 91.2% Stage    Time    %TST    Latency Wake    12.4 1            49.0    10.3        0.0 2            189.0    39.9        6.0 3            31.5        6.6        24.0 4            72.0        15.2        28.0 REM        132.5    28.0        91.0 Apneas & Hypopneas: 35 Apnea & Hypopnea/hr: 4.4 REM events/hr: 15.4* Non-REM events/hr: 0.2 % Sleep Time Supine: 67.0 Supine events/hr: 6.0 Snoring: Yes* EKG Arrhythmia: No Oxygen Saturation Parameter            Awake    Non-REM    REM Mean SaO2%:        98.6        96.5            96.7 Min. SaO2%:           93.9        92.4            84.0* Max. SaO2%:        99.2            99.0            99.8 All totals for PLMS are zero. Restless Leg Activity: No Alpha-EEG score (1-5): 2 Periodic EEG Arousals/hr: 1.4 Spontaneous Arousals/hr: Total: 5.1 Non-REM: 4.6 REM: 6.3 Respiratory Arousals/hr: Total: 3.8 Non-REM 0.2 REM: 13.1* Periodic Breathing: No Bruxism (Total Episodes): No MSLT                Nap 1        Nap 2        Nap 3        Nap 4 Means Start Time        09:37:09    11:31:52    01:27:26    03:31:16 End Time         09:55:23    11:58:23    01:58:53    03:51:13 Rec. Length        18.2            26.7            31.5        20.0 24.1 Tot. Sleep Time    1.0            15.5            7.0       No Sleep 5.9 Onset to Sleep    17.0            10.3            15.2        N/A N/A Onset to REM    No REM   No REM   No REM No Sleep        No REMs *SIGNIFICANT ABNORMALITIES (see interpretation) {Note from Ali: The stars and above note were on the results sheet, but there was no interpretation attached. I was told explicitly that I don’t have sleep apnea, although it strikes me as odd that they reported snoring and REM O2 down to 84.0%. When I sleep in the presence of other people, I am told I do not snore. Presumably the events shown represent hypopneas rather than apneas.}

Response:

your results are quite simliar to my last sleep study, i was told same as you, no apnea.  My O2 levels also dropped to 84% – indicating to ME that something isn’t right! (previous study showed moderate apnea) I wish I could offer some advice, but i’m really not sure i have any – it seems to me that 15.4 apnea events per hour during REM presents a problem and based on that, enough to require treatment.. But it seems like docs just like the statistics and because your non-REM sleep showed few enough events to bring the overall average down, it brought you under the so called "10+/hr events" which "require" treatment. How did you feel you slept through the study? was it reasonably typical of your usual sleep? I’m guessing not. — Beth in Australia =================== FAQ for alt.support.sleep-disorder can be found here http://www.anchorweb.com.au/sleepdisorders this site is a work in progress – feel free to submit info/articles "Ali Jane" <loc…@hotmail.com> wrote in message

news:XDl0a.232384$ej1.192654@news02.bloor.is.net.cable.rogers.com… – Hide quoted text — Show quoted text -> I don’t know what to make of my test results. My sleep specialist is > specifically a sleep specialist, not a psychiatrist, GP, cardiologist, > neurologist, or whatever. He was pretty confident from my symptoms that I > have narcolepsy. I had a PSG and MSLT December 29 and 30 like it’s supposed > to be done. I lost my job 3 weeks ago and have submitted all of the forms > for Ontario and Canadian disability pensions, and EI sickness benefits. I > have been waiting on these results so I can submit medical reports. > Today I got my results, delivered to me by my doctor and one of his > colleagues who appears to have a background in neurology. According to my > test results, I am perfectly normal. There is no explanation why I am so > sleepy. We listed off a number of conditions (thyroid, chronic fatigue, > etc.) that could cause similar symptoms, but nothing fits. A couple of > months ago I had my GP check off every blood test on the chart, and > everything came back normal. The doctor suggested I might be depressed, but > I have had depression many times (sometimes very severe) and right now, I > can’t say I feel depressed, only frustrated and worried. I asked if it could > be early signs of MS, and they said it’s unlikely but possible. I have no > apnea. > I have been given a sample of Alertec 100mg, and have been instructed to > take one pill every morning for 10 days. They have no idea what it will do > to me, so if I have a bad reaction I am to stop and phone them right away. > If there is no bad reaction, I am to phone them in a week. I am supposed to > see the head of the clinic, Dr. Moldofsky, as soon as possible, and they > will phone me if he has a cancellation. If necessary, I will go through any > tests the doctors order. I may consult a neurologist about MS if nothing is > found in the next few weeks, as my mother has it and we suspect her mother > and grandmother also had it. > My experience is currently on the NG web site under Stories/Narcolepsy. It > describes my struggle with EDS. > I am posting my test results here for your information. If anyone has any > ideas that I could ask the doctor about, I would like to hear them! I will > keep you posted if I hear anything new. Thanks. – Ali :-/ > Lights Out: 22:55:54 > Lights On: 07:35:28 > Total Recording Time: 519.6 min > Total Sleep Period Time: 486.4 min > Total Sleep Time (TST): 474.0 min > Sleep Latency: 33.1 min > Number of REM Periods: 4 > Number of Stage Shifts: 59 > Number of Awakenings: 9 > Sleep Efficiency: 91.2% > Stage    Time    %TST    Latency > Wake    12.4 > 1            49.0    10.3        0.0 > 2            189.0    39.9        6.0 > 3            31.5        6.6        24.0 > 4            72.0        15.2        28.0 > REM        132.5    28.0        91.0 > Apneas & Hypopneas: 35 > Apnea & Hypopnea/hr: 4.4 > REM events/hr: 15.4* > Non-REM events/hr: 0.2 > % Sleep Time Supine: 67.0 > Supine events/hr: 6.0 > Snoring: Yes* > EKG Arrhythmia: No > Oxygen Saturation > Parameter            Awake    Non-REM    REM > Mean SaO2%:        98.6        96.5            96.7 > Min. SaO2%:           93.9        92.4            84.0* > Max. SaO2%:        99.2            99.0            99.8 > All totals for PLMS are zero. > Restless Leg Activity: No > Alpha-EEG score (1-5): 2 > Periodic EEG Arousals/hr: 1.4 > Spontaneous Arousals/hr: > Total: 5.1 > Non-REM: 4.6 > REM: 6.3 > Respiratory Arousals/hr: > Total: 3.8 > Non-REM 0.2 > REM: 13.1* > Periodic Breathing: No > Bruxism (Total Episodes): No > MSLT                Nap 1        Nap 2        Nap 3        Nap 4 > Means > Start Time        09:37:09    11:31:52    01:27:26    03:31:16 > End Time         09:55:23    11:58:23    01:58:53    03:51:13 > Rec. Length        18.2            26.7            31.5        20.0 > 24.1 > Tot. Sleep Time    1.0            15.5            7.0       No Sleep > 5.9 > Onset to Sleep    17.0            10.3            15.2        N/A > N/A > Onset to REM    No REM   No REM   No REM No Sleep        No REMs > *SIGNIFICANT ABNORMALITIES (see interpretation) > {Note from Ali: The stars and above note were on the results sheet, but > there was no interpretation attached. I was told explicitly that I don’t > have sleep apnea, although it strikes me as odd that they reported snoring > and REM O2 down to 84.0%. When I sleep in the presence of other people, I am > told I do not snore. Presumably the events shown represent hypopneas rather > than apneas.}

Response:

> I would suggest seeing another doctor.  And don’t let ‘top in the field’ > lull you into thinking that is good.    Remember, McDonalds are top in > their field as well.

Thanks Lee. I like that saying, I’ll have to remember it. :-) > How near to Toronto are you?  Close enough to travel to a doctor?

Yes, my specialists so far are at U of T. I am willing to go anywhere in Southern Ontario, if necessary. > My sleep specialist is a neurologist at Sunnybrooke and has a private > sleep practice in the medical building beside Centennary Hospital on > Ellesmere in Scarbough, about two km south of 401.

Thanks! I was actually wondering about consulting a neurologist next anyway, since there is a history of neurological disease in my family (multiple sclerosis). I am reluctant to see my mother’s doctor as I want to be evaluated on my own, rather than by any preconceived ideas he has about her. If you wouldn’t mind sending me your doctor’s name, I will see if I can get a referral to him/her directly. > I can’t remember if you have ever posted your sleep study results here. > If you haven’t, you might get so good ideas from the group.  Many heads > and collective experiences can be a help in this regard.

I did actually post my results. The test results were really really normal aside from a very brief dip in my oxygen level to 84%. I had all the sleep stages, slept almost 8 hours, snored lightly (a big improvement from my major snoring and hypopneas a few years ago), no apnea detected, nothing strange at all. I was also unable to nap on my MSLT. Thanks very much again for your suggestion! – Ali :-)

Response:

- Hide quoted text — Show quoted text -Ali Jane wrote: > > I would suggest seeing another doctor.  And don’t let ‘top in the field’ > > lull you into thinking that is good.    Remember, McDonalds are top in > > their field as well. > Thanks Lee. I like that saying, I’ll have to remember it. :-) > > How near to Toronto are you?  Close enough to travel to a doctor? > Yes, my specialists so far are at U of T. I am willing to go anywhere in > Southern Ontario, if necessary. > > My sleep specialist is a neurologist at Sunnybrooke and has a private > > sleep practice in the medical building beside Centennary Hospital on > > Ellesmere in Scarbough, about two km south of 401. > Thanks! I was actually wondering about consulting a neurologist next anyway, > since there is a history of neurological disease in my family (multiple > sclerosis). I am reluctant to see my mother’s doctor as I want to be > evaluated on my own, rather than by any preconceived ideas he has about her. > If you wouldn’t mind sending me your doctor’s name, I will see if I can get > a referral to him/her directly. > > I can’t remember if you have ever posted your sleep study results here. > > If you haven’t, you might get so good ideas from the group.  Many heads > > and collective experiences can be a help in this regard. > I did actually post my results. The test results were really really normal > aside from a very brief dip in my oxygen level to 84%. I had all the sleep > stages, slept almost 8 hours, snored lightly (a big improvement from my > major snoring and hypopneas a few years ago), no apnea detected, nothing > strange at all. I was also unable to nap on my MSLT. > Thanks very much again for your suggestion! – Ali :-)

Ali…… info mailed directly to you. Good luck on getting a resolution. Regards Lee in Toronto ———–== Posted via Newsfeed.Com – Uncensored Usenet News ==———-    http://www.newsfeed.com       The #1 Newsgroup Service in the World! —–= Over 100,000 Newsgroups – Unlimited Fast Downloads – 19 Servers =—–

Response:

Peter Ackermann wrote: > Who ever sent this original meeage please contact me at > w4…@ispwest.com > I need to know who the doctor is! > and you are. > this guy sounds like a neuropsychiatrist not a Sleep doc.

Why do you ‘need’ to know this? Ali……. if you want to post the doctors name, OK, but I would be very carefull in giving out personal information. Regards Lee in Toronto ———–== Posted via Newsfeed.Com – Uncensored Usenet News ==———-    http://www.newsfeed.com       The #1 Newsgroup Service in the World! —–= Over 100,000 Newsgroups – Unlimited Fast Downloads – 19 Servers =—–

Response:

Posted and emailed Ali Jane – I think you’ve been reading here long enough to recognize when someone is asking REALLY personal questions.  And someone has done just that, probably from the narco NG.  I wouldn’t respond! – Hide quoted text — Show quoted text -Ali Jane wrote: > Well, after waiting 2 1/2 months to see the top sleep specialist available, > I find myself angry and disappointed. The I saw the doctor yesterday and had > hoped he would have some idea of what tests or treatment should be done > next, after my sleep test came back completely normal. > Instead, from the moment I walked into his office he steered the > conversation in an obvious effort to "prove" that I am severely depressed. > He asked many questions about my childhood, painful memories that made me > upset and I did cry a little. He used this as proof that all I need is an > antidepressant and counselling. > I have had counselling for years and have experienced depression in the > past. I can say for sure that what I am experiencing in recent months is NOT > depression. Even my family and friends were shocked by his diagnosis. They > have all marveled at the fact that in spite of my topsy-turvy life for the > past 6 months, I have been very optimistic and trying hard to find my own > solutions along the way. > This doctor tried to make me say I abuse drugs and/or alcohol, and I do > neither. (I have no interest in street drugs, and my alcohol consumption is > limited to 2 or 3 drinks at a party about every six weeks. Hardly an > addiction!) He also grilled me on my use of antihistamines, when and how and > why I take them. Geez! Is it that unusual to take an allergy pill a day > during the sneezing season, particularly when I enjoy spending time > outdoors? > Not only did he ask questions to get the specific responses he wanted, but > he cut me off any time I tried to tell him something that didn’t correspond > to his theory. For example, I tried to point out that I have been falling > asleep during the day since age 5, at least that was when it was first > noticed as unusual. Depression doesn’t explain my automatic behaviour when I > am forced to stay awake during a sleep attack. Also, one of the major > symptoms of depression is a lack of motivation or interest in doing things > or socialising. I, on the other hand, very much want to spend time with frie > nds, go dancing, hike and travel and so on. The only thing stopping me is my > physical inability to even think or get out of bed some days. Even on a good > day, I only have 3 hours maximum before I have to take a nap! > Last night I wrote a letter to the doctor with all my thoughts. I don’t > expect it will change anything, but I feel he has acted unprofessionally by > making me feel like a fool rather than simply admitting he doesn’t know > what’s wrong with me. > I know many of you will have had this same experience. My question is what > do I do next? I am in Canada, near Toronto. Thanks in advance to anyone who > offers suggestions. – Ali > "Ali Jane" <loc…@hotmail.com> wrote in message > news:H_n0a.572647$F2h1.85319@news01.bloor.is.net.cable.rogers.com… >>>I wish I could offer some advice, but i’m really not sure i have any – > it >>>seems to me that 15.4 apnea events per hour during REM presents a > problem >>>and based on that, enough to require treatment.. But it seems like docs >>just >>>like the statistics and because your non-REM sleep showed few enough >>events >>>to bring the overall average down, it brought you under the so called >>>"10+/hr events" which "require" treatment. >>Well, I know on my first PSG (2 years ago, pre-tonsillectomy) I had 16 >>hypopneas and no apneas per hour. Presumably the events shown on this > report >>are also hypopneas, which may explain their lack of alarm. I’ll have to > ask >>about the 84% oxygen, though. That seems pretty strange to me. >>>How did you feel you slept through the study? was it reasonably typical > of >>>your usual sleep? I’m guessing not. >>Well, I slept really well except for the times I woke up and either threw >>the blankets off or piled them back on. The room was really cold, but the >>bedding was too hot, and even with the blankets thrown aside the parts of > my >>body touching the mattress felt like they were burning, it was almost >>painful like an electric heated surface or something. I commented on that > on >>my report in the morning, but nobody had mentioned it. I don’t recall >>actually getting sweaty, just the intense feeling of heat on my skin. > Aside >>from that, it was great. >>I found it strange that I wasn’t able to nap that day. I was somewhat > sleepy >>in between naps, and my natural cycle seems to be that I need a 2-hour nap >>every afternoon. I don’t know why 2 hours, that’s just when I wake up, >>regardless of how much sleep I had the night before or what time I lay > down >>for the nap. All I can figure is that because I wasn’t *doing* anything in >>between naps, I didn’t exert myself enough physically or mentally to > really >>feel the pull of sleep. – Ali

Response:

- Hide quoted text — Show quoted text -Ali Jane wrote: > Well, after waiting 2 1/2 months to see the top sleep specialist available, > I find myself angry and disappointed. The I saw the doctor yesterday and had > hoped he would have some idea of what tests or treatment should be done > next, after my sleep test came back completely normal. > Instead, from the moment I walked into his office he steered the > conversation in an obvious effort to "prove" that I am severely depressed. > He asked many questions about my childhood, painful memories that made me > upset and I did cry a little. He used this as proof that all I need is an > antidepressant and counselling. > I have had counselling for years and have experienced depression in the > past. I can say for sure that what I am experiencing in recent months is NOT > depression. Even my family and friends were shocked by his diagnosis. They > have all marveled at the fact that in spite of my topsy-turvy life for the > past 6 months, I have been very optimistic and trying hard to find my own > solutions along the way. > This doctor tried to make me say I abuse drugs and/or alcohol, and I do > neither. (I have no interest in street drugs, and my alcohol consumption is > limited to 2 or 3 drinks at a party about every six weeks. Hardly an > addiction!) He also grilled me on my use of antihistamines, when and how and > why I take them. Geez! Is it that unusual to take an allergy pill a day > during the sneezing season, particularly when I enjoy spending time > outdoors? > Not only did he ask questions to get the specific responses he wanted, but > he cut me off any time I tried to tell him something that didn’t correspond > to his theory. For example, I tried to point out that I have been falling > asleep during the day since age 5, at least that was when it was first > noticed as unusual. Depression doesn’t explain my automatic behaviour when I > am forced to stay awake during a sleep attack. Also, one of the major > symptoms of depression is a lack of motivation or interest in doing things > or socialising. I, on the other hand, very much want to spend time with frie > nds, go dancing, hike and travel and so on. The only thing stopping me is my > physical inability to even think or get out of bed some days. Even on a good > day, I only have 3 hours maximum before I have to take a nap! > Last night I wrote a letter to the doctor with all my thoughts. I don’t > expect it will change anything, but I feel he has acted unprofessionally by > making me feel like a fool rather than simply admitting he doesn’t know > what’s wrong with me. > I know many of you will have had this same experience. My question is what > do I do next? I am in Canada, near Toronto. Thanks in advance to anyone who > offers suggestions. – Ali

I would suggest seeing another doctor.  And don’t let ‘top in the field’ lull you into thinking that is good.    Remember, McDonalds are top in their field as well. How near to Toronto are you?  Close enough to travel to a doctor? My sleep specialist is a neurologist at Sunnybrooke and has a private sleep practice in the medical building beside Centennary Hospital on Ellesmere in Scarbough, about two km south of 401. I can’t remember if you have ever posted your sleep study results here. If you haven’t, you might get so good ideas from the group.  Many heads and collective experiences can be a help in this regard. Regards Lee in Toronto ———–== Posted via Newsfeed.Com – Uncensored Usenet News ==———-    http://www.newsfeed.com       The #1 Newsgroup Service in the World! —–= Over 100,000 Newsgroups – Unlimited Fast Downloads – 19 Servers =—–

Response:

Who ever sent this original meeage please contact me at w4…@ispwest.com I need to know who the doctor is! and you are. this guy sounds like a neuropsychiatrist not a Sleep doc. On Thu, 24 Apr 2003 03:23:12 GMT, "Ali Jane" <loc…@hotmail.com> wrote: – Hide quoted text — Show quoted text ->Well, after waiting 2 1/2 months to see the top sleep specialist available, >I find myself angry and disappointed. The I saw the doctor yesterday and had >hoped he would have some idea of what tests or treatment should be done >next, after my sleep test came back completely normal. >Instead, from the moment I walked into his office he steered the >conversation in an obvious effort to "prove" that I am severely depressed. >He asked many questions about my childhood, painful memories that made me >upset and I did cry a little. He used this as proof that all I need is an >antidepressant and counselling. >I have had counselling for years and have experienced depression in the >past. I can say for sure that what I am experiencing in recent months is NOT >depression. Even my family and friends were shocked by his diagnosis. They >have all marveled at the fact that in spite of my topsy-turvy life for the >past 6 months, I have been very optimistic and trying hard to find my own >solutions along the way. >This doctor tried to make me say I abuse drugs and/or alcohol, and I do >neither. (I have no interest in street drugs, and my alcohol consumption is >limited to 2 or 3 drinks at a party about every six weeks. Hardly an >addiction!) He also grilled me on my use of antihistamines, when and how and >why I take them. Geez! Is it that unusual to take an allergy pill a day >during the sneezing season, particularly when I enjoy spending time >outdoors? >Not only did he ask questions to get the specific responses he wanted, but >he cut me off any time I tried to tell him something that didn’t correspond >to his theory. For example, I tried to point out that I have been falling >asleep during the day since age 5, at least that was when it was first >noticed as unusual. Depression doesn’t explain my automatic behaviour when I >am forced to stay awake during a sleep attack. Also, one of the major >symptoms of depression is a lack of motivation or interest in doing things >or socialising. I, on the other hand, very much want to spend time with frie >nds, go dancing, hike and travel and so on. The only thing stopping me is my >physical inability to even think or get out of bed some days. Even on a good >day, I only have 3 hours maximum before I have to take a nap! >Last night I wrote a letter to the doctor with all my thoughts. I don’t >expect it will change anything, but I feel he has acted unprofessionally by >making me feel like a fool rather than simply admitting he doesn’t know >what’s wrong with me. >I know many of you will have had this same experience. My question is what >do I do next? I am in Canada, near Toronto. Thanks in advance to anyone who >offers suggestions. – Ali >"Ali Jane" <loc…@hotmail.com> wrote in message >news:H_n0a.572647$F2h1.85319@news01.bloor.is.net.cable.rogers.com… >> > I wish I could offer some advice, but i’m really not sure i have any – >it >> > seems to me that 15.4 apnea events per hour during REM presents a >problem >> > and based on that, enough to require treatment.. But it seems like docs >> just >> > like the statistics and because your non-REM sleep showed few enough >> events >> > to bring the overall average down, it brought you under the so called >> > "10+/hr events" which "require" treatment. >> Well, I know on my first PSG (2 years ago, pre-tonsillectomy) I had 16 >> hypopneas and no apneas per hour. Presumably the events shown on this >report >> are also hypopneas, which may explain their lack of alarm. I’ll have to >ask >> about the 84% oxygen, though. That seems pretty strange to me. >> > How did you feel you slept through the study? was it reasonably typical >of >> > your usual sleep? I’m guessing not. >> Well, I slept really well except for the times I woke up and either threw >> the blankets off or piled them back on. The room was really cold, but the >> bedding was too hot, and even with the blankets thrown aside the parts of >my >> body touching the mattress felt like they were burning, it was almost >> painful like an electric heated surface or something. I commented on that >on >> my report in the morning, but nobody had mentioned it. I don’t recall >> actually getting sweaty, just the intense feeling of heat on my skin. >Aside >> from that, it was great. >> I found it strange that I wasn’t able to nap that day. I was somewhat >sleepy >> in between naps, and my natural cycle seems to be that I need a 2-hour nap >> every afternoon. I don’t know why 2 hours, that’s just when I wake up, >> regardless of how much sleep I had the night before or what time I lay >down >> for the nap. All I can figure is that because I wasn’t *doing* anything in >> between naps, I didn’t exert myself enough physically or mentally to >really >> feel the pull of sleep. – Ali

Response:

Well, after waiting 2 1/2 months to see the top sleep specialist available, I find myself angry and disappointed. The I saw the doctor yesterday and had hoped he would have some idea of what tests or treatment should be done next, after my sleep test came back completely normal. Instead, from the moment I walked into his office he steered the conversation in an obvious effort to "prove" that I am severely depressed. He asked many questions about my childhood, painful memories that made me upset and I did cry a little. He used this as proof that all I need is an antidepressant and counselling. I have had counselling for years and have experienced depression in the past. I can say for sure that what I am experiencing in recent months is NOT depression. Even my family and friends were shocked by his diagnosis. They have all marveled at the fact that in spite of my topsy-turvy life for the past 6 months, I have been very optimistic and trying hard to find my own solutions along the way. This doctor tried to make me say I abuse drugs and/or alcohol, and I do neither. (I have no interest in street drugs, and my alcohol consumption is limited to 2 or 3 drinks at a party about every six weeks. Hardly an addiction!) He also grilled me on my use of antihistamines, when and how and why I take them. Geez! Is it that unusual to take an allergy pill a day during the sneezing season, particularly when I enjoy spending time outdoors? Not only did he ask questions to get the specific responses he wanted, but he cut me off any time I tried to tell him something that didn’t correspond to his theory. For example, I tried to point out that I have been falling asleep during the day since age 5, at least that was when it was first noticed as unusual. Depression doesn’t explain my automatic behaviour when I am forced to stay awake during a sleep attack. Also, one of the major symptoms of depression is a lack of motivation or interest in doing things or socialising. I, on the other hand, very much want to spend time with frie nds, go dancing, hike and travel and so on. The only thing stopping me is my physical inability to even think or get out of bed some days. Even on a good day, I only have 3 hours maximum before I have to take a nap! Last night I wrote a letter to the doctor with all my thoughts. I don’t expect it will change anything, but I feel he has acted unprofessionally by making me feel like a fool rather than simply admitting he doesn’t know what’s wrong with me. I know many of you will have had this same experience. My question is what do I do next? I am in Canada, near Toronto. Thanks in advance to anyone who offers suggestions. – Ali "Ali Jane" <loc…@hotmail.com> wrote in message

news:H_n0a.572647$F2h1.85319@news01.bloor.is.net.cable.rogers.com… – Hide quoted text — Show quoted text -> > I wish I could offer some advice, but i’m really not sure i have any – it > > seems to me that 15.4 apnea events per hour during REM presents a problem > > and based on that, enough to require treatment.. But it seems like docs > just > > like the statistics and because your non-REM sleep showed few enough > events > > to bring the overall average down, it brought you under the so called > > "10+/hr events" which "require" treatment. > Well, I know on my first PSG (2 years ago, pre-tonsillectomy) I had 16 > hypopneas and no apneas per hour. Presumably the events shown on this report > are also hypopneas, which may explain their lack of alarm. I’ll have to ask > about the 84% oxygen, though. That seems pretty strange to me. > > How did you feel you slept through the study? was it reasonably typical of > > your usual sleep? I’m guessing not. > Well, I slept really well except for the times I woke up and either threw > the blankets off or piled them back on. The room was really cold, but the > bedding was too hot, and even with the blankets thrown aside the parts of my > body touching the mattress felt like they were burning, it was almost > painful like an electric heated surface or something. I commented on that on > my report in the morning, but nobody had mentioned it. I don’t recall > actually getting sweaty, just the intense feeling of heat on my skin. Aside > from that, it was great. > I found it strange that I wasn’t able to nap that day. I was somewhat sleepy > in between naps, and my natural cycle seems to be that I need a 2-hour nap > every afternoon. I don’t know why 2 hours, that’s just when I wake up, > regardless of how much sleep I had the night before or what time I lay down > for the nap. All I can figure is that because I wasn’t *doing* anything in > between naps, I didn’t exert myself enough physically or mentally to really > feel the pull of sleep. – Ali

Response:

> I wish I could offer some advice, but i’m really not sure i have any – it > seems to me that 15.4 apnea events per hour during REM presents a problem > and based on that, enough to require treatment.. But it seems like docs just > like the statistics and because your non-REM sleep showed few enough events > to bring the overall average down, it brought you under the so called > "10+/hr events" which "require" treatment.

Well, I know on my first PSG (2 years ago, pre-tonsillectomy) I had 16 hypopneas and no apneas per hour. Presumably the events shown on this report are also hypopneas, which may explain their lack of alarm. I’ll have to ask about the 84% oxygen, though. That seems pretty strange to me. > How did you feel you slept through the study? was it reasonably typical of > your usual sleep? I’m guessing not.

Well, I slept really well except for the times I woke up and either threw the blankets off or piled them back on. The room was really cold, but the bedding was too hot, and even with the blankets thrown aside the parts of my body touching the mattress felt like they were burning, it was almost painful like an electric heated surface or something. I commented on that on my report in the morning, but nobody had mentioned it. I don’t recall actually getting sweaty, just the intense feeling of heat on my skin. Aside from that, it was great. I found it strange that I wasn’t able to nap that day. I was somewhat sleepy in between naps, and my natural cycle seems to be that I need a 2-hour nap every afternoon. I don’t know why 2 hours, that’s just when I wake up, regardless of how much sleep I had the night before or what time I lay down for the nap. All I can figure is that because I wasn’t *doing* anything in between naps, I didn’t exert myself enough physically or mentally to really feel the pull of sleep. – Ali

Response:

Nipple question

Question:

there are relaxation tapes which you listen to as you are in bed, they require you to clench and then release groups of muscles, begining at the toes and working one’s way upward…they really worked for me (did not use during bc treatment, but at another time years ago).

| The dentist had mentioned getting  a bite guard but I didn’t know I could | get one over the counter.  I think I will try that before getting a custom | fit mold.  Thanks! | | Let me know if the self-hypnosis tape works.  I’ve tried some sleep aid cd’s | but haven’t found one that works.  I think my mind is just racing and it | can’t slow down and relax.  Just a lot of tension. | | I’ve tried melatonin, sleepytime tea, hot cocoa, warm milk and a script for | restoril.  Getting to sleep can sometimes be accomplished.  Staying asleep | and sleeping well can’t. (yet) | | Good luck. | | Catherine | | |

| | I’m not weepy at all.  Just tired.  Very tired.  And having anxiety | issues. | Can’t sleep.  I wake up with my teeth all clenched together and with a | headache.  Can’t concentrate.  Can’t get motivated because I just feel | tired. | | | Do you already have a "bite protector", "bite splint", "night guard" or | some similarly-named thing to wear on your teeth when sleeping?  If not, | that’s a place to start.  It doesn’t stop the clenching, but will reduce | the headaches for most people.  You can get them from a dentist, or | there are non-custom ones available from health products catalogs (I can | probably find an example on the web, if you wish). | | Two plus years after diagnosis, I too am still having sleep interruption | problems (often waking up with clenched muscles, similar to what you | report).  Centuring into territory where I’m an extreme skeptic & | scoffer (I hate stuff like this!), I’m now trying out a "self hypnosis" | CD to see if that helps.  (One of the women from my local BC support | group said a hypnotherapist helped greatly with her sleep interruption | problems; I decided to try the cheaper approach before seeking a | hypnotherapist, but that’s probably next.) | | I hope you’re able to find something that helps! (If you do, please | share your solution!) | | Ann T. | | |

Response:

There were some threads I hadn’t read for a few days so when I went to the following thread–and found the message below I couldn’t help but smile.  I had forgotten what the thread had evolved into and I found the subject heading that these were listed under via aol a bit amusing… Re: Nipple question/Catherine

– Hide quoted text — Show quoted text – The dentist had mentioned getting  a bite guard but I didn’t know I could get one over the counter.  I think I will try that before getting a custom fit mold.  Thanks! Let me know if the self-hypnosis tape works.  I’ve tried some sleep aid cd’s but haven’t found one that works.  I think my mind is just racing and it can’t slow down and relax.  Just a lot of tension. I’ve tried melatonin, sleepytime tea, hot cocoa, warm milk and a script for restoril.  Getting to sleep can sometimes be accomplished.  Staying asleep and sleeping well can’t. (yet) Good luck. <Snip

A conventional bite guard may not work well for this purpose.  Most of them permit clamping down with the rear teeth.  An appliance called a Nociceptive Trigeminal Inhibitor-tension suppression system (NTI-tss) is fitted over the upper incisors at night and triggers a reflex that prevents forceful clenching.  See:  http://www.nti-tss.com/.  Many migraineurs find their headaches are triggered by bruxism (which may be clenching without grinding).  This has proven a Godsend for some, but not all.  

Response:

Well that is a good start.  Maybe once you are more relaxed while you sleep, you won’t wake up as often. Catherine – Hide quoted text — Show quoted text – Let me know if the self-hypnosis tape works. Early returns after a few days’ use:  It *seems* to be decreasing the muscle-clenching, which may improve the quality/restfulness of the sleep I get.  But I don’t think it’s changed the frequency with which I wake up (yet, anyway) . . . and that’s the main problem. Ann T.

Response:

Let me know if the self-hypnosis tape works.

Early returns after a few days’ use:  It *seems* to be decreasing the muscle-clenching, which may improve the quality/restfulness of the sleep I get.  But I don’t think it’s changed the frequency with which I wake up (yet, anyway) . . . and that’s the main problem. Ann T.

Response:

OTC night guards are available at pharmacies for about $25 as well…

| | I’m not weepy at all.  Just tired.  Very tired.  And having anxiety issues. | Can’t sleep.  I wake up with my teeth all clenched together and with a | headache.  Can’t concentrate.  Can’t get motivated because I just feel | tired. | | | Do you already have a "bite protector", "bite splint", "night guard" or | some similarly-named thing to wear on your teeth when sleeping?  If not, | that’s a place to start.  It doesn’t stop the clenching, but will reduce | the headaches for most people.  You can get them from a dentist, or | there are non-custom ones available from health products catalogs (I can | probably find an example on the web, if you wish). | | Two plus years after diagnosis, I too am still having sleep interruption | problems (often waking up with clenched muscles, similar to what you | report).  Centuring into territory where I’m an extreme skeptic & | scoffer (I hate stuff like this!), I’m now trying out a "self hypnosis" | CD to see if that helps.  (One of the women from my local BC support | group said a hypnotherapist helped greatly with her sleep interruption | problems; I decided to try the cheaper approach before seeking a | hypnotherapist, but that’s probably next.) | | I hope you’re able to find something that helps! (If you do, please | share your solution!) | | Ann T.

Response:

– Hide quoted text — Show quoted text – The dentist had mentioned getting  a bite guard but I didn’t know I could get one over the counter.  I think I will try that before getting a custom fit mold.  Thanks! Let me know if the self-hypnosis tape works.  I’ve tried some sleep aid cd’s but haven’t found one that works.  I think my mind is just racing and it can’t slow down and relax.  Just a lot of tension. I’ve tried melatonin, sleepytime tea, hot cocoa, warm milk and a script for restoril.  Getting to sleep can sometimes be accomplished.  Staying asleep and sleeping well can’t. (yet) Good luck. <Snip

A conventional bite guard may not work well for this purpose.  Most of them permit clamping down with the rear teeth.  An appliance called a Nociceptive Trigeminal Inhibitor-tension suppression system (NTI-tss) is fitted over the upper incisors at night and triggers a reflex that prevents forceful clenching.  See:  http://www.nti-tss.com/.  Many migraineurs find their headaches are triggered by bruxism (which may be clenching without grinding).  This has proven a Godsend for some, but not all.

Response:

Thanks.  I looked that up and it makes sense.  You’d think they would want to see me before sending me off to get another mammogram so soon.  Oh well.. I feel better now.  Thanks again! Catherine

– Hide quoted text — Show quoted text – I completed radiation 20 months ago.  I had (supposedly)an atypical amount of edema– the radiated breast was about 2 cup sizes larger than the other for about a year!  It is still tan (and a very rubbery texture).  Anyway- I noticed a very thick, grainy white discharge form the nipple about 6-8 months ago- and was able to express more.  The medical and radiation oncologists said they had no idea what it was(!)  I went back to my surgeon- she took one look and said- "That’s just ecstasia" (a benign collection of dead cells from the inflammation caused by radiation).  When I went for my last mammogram, the radiologist said that it (ecstasia) was very common. I don’t know why the oncologists didn’t know about this, but I informed them. Hopefully, you have a similar situation.  jeannette Just wondering if this is normal or at least somewhat typical: I had bc in the right breast.  Surgery 1/02, chemo and radiation completed 9/02.  Had a hysterectomy/oopherectomy 9/01.  Am on Arimidex. Anyway, the right breast has a white, flaky discharge coming from the nipple.  Nothing on the left breast.  I would think that whatever milk glands are left wouldn’t be producing anything since I have no estrogen. Last mammogram 10/02 was fine. Is this normal? Catherine

Response:

The dentist had mentioned getting  a bite guard but I didn’t know I could get one over the counter.  I think I will try that before getting a custom fit mold.  Thanks! Let me know if the self-hypnosis tape works.  I’ve tried some sleep aid cd’s but haven’t found one that works.  I think my mind is just racing and it can’t slow down and relax.  Just a lot of tension. I’ve tried melatonin, sleepytime tea, hot cocoa, warm milk and a script for restoril.  Getting to sleep can sometimes be accomplished.  Staying asleep and sleeping well can’t. (yet) Good luck. Catherine – Hide quoted text — Show quoted text – I’m not weepy at all.  Just tired.  Very tired.  And having anxiety issues. Can’t sleep.  I wake up with my teeth all clenched together and with a headache.  Can’t concentrate.  Can’t get motivated because I just feel tired. Do you already have a "bite protector", "bite splint", "night guard" or some similarly-named thing to wear on your teeth when sleeping?  If not, that’s a place to start.  It doesn’t stop the clenching, but will reduce the headaches for most people.  You can get them from a dentist, or there are non-custom ones available from health products catalogs (I can probably find an example on the web, if you wish). Two plus years after diagnosis, I too am still having sleep interruption problems (often waking up with clenched muscles, similar to what you report).  Centuring into territory where I’m an extreme skeptic & scoffer (I hate stuff like this!), I’m now trying out a "self hypnosis" CD to see if that helps.  (One of the women from my local BC support group said a hypnotherapist helped greatly with her sleep interruption problems; I decided to try the cheaper approach before seeking a hypnotherapist, but that’s probably next.) I hope you’re able to find something that helps! (If you do, please share your solution!) Ann T.

Response:

<<  Can’t concentrate.  Can’t get motivated because I just feel tired. On thing that helped me with the above was methylphenidate–or Ritalin.  It was prescribed for M.S. related fatigue–before they had any medications available to treat M.S.  This was about 8 or 9 years ago.  But, who knows, maybe that extraordinary fatigue was due to the possible onset of b.c.  I had been dealing with the M.S. for over 21 years+ at that time without it becoming that intense. Anyway, there have been some clinical trials using Ritalin to assist those going through chemo with attention and concentration related difficulties–and according the reported findings it does help.  It also  helps with fatigue. I have also found that deep relaxation techniques assist me with this as well. I initially learned them through transcendental meditation which I took up to hopefully change the predicted course of M.S. when it was dx’d 30 yrs ago (just after my 21st birthday).  I don’t know if that is what kept in under relatively good control or not but it gave me another good relaxation tool.  However, I did not practice it as learned–found that it seemed to result in a possible M.S. symptom but substituted an alternate form of deep relaxation which I came up with.  Basically, they are just 20 minute power naps.  They really help, especially if I only had a chance to get a few hours of sleep.  I generally do this while lying down, counting very slowly (that helps me keep focused), and take deep, slow breaths.  I have also done it sitting up at the gym while listening to new-age music (flute sounds, primarily; I find it distracting if there are any drums or other intensive rhythm instruments).   Anyway, it lifts the fatigue and helps me concentrate.

Response:

I’m not weepy at all.  Just tired.  Very tired.  And having anxiety issues. Can’t sleep.  I wake up with my teeth all clenched together and with a headache.  Can’t concentrate.  Can’t get motivated because I just feel tired.

Do you already have a "bite protector", "bite splint", "night guard" or some similarly-named thing to wear on your teeth when sleeping?  If not, that’s a place to start.  It doesn’t stop the clenching, but will reduce the headaches for most people.  You can get them from a dentist, or there are non-custom ones available from health products catalogs (I can probably find an example on the web, if you wish). Two plus years after diagnosis, I too am still having sleep interruption problems (often waking up with clenched muscles, similar to what you report).  Centuring into territory where I’m an extreme skeptic & scoffer (I hate stuff like this!), I’m now trying out a "self hypnosis" CD to see if that helps.  (One of the women from my local BC support group said a hypnotherapist helped greatly with her sleep interruption problems; I decided to try the cheaper approach before seeking a hypnotherapist, but that’s probably next.) I hope you’re able to find something that helps! (If you do, please share your solution!) Ann T.

Response:

I too am taking an antidepressnt, Lexpro, and find that it helps me enormously.  No more crying jags — just quick pity parties — and generally an upbeat outlook on the whole thing.   Good luck annie with your next chemo — I did 2d treatment on Wednesday and feel fine except a little fatigue.  Just a good opportunity to baby myself! Take care, BarbF

Response:

I don’t know if this will help you or not dear.. But you mentioned Fatigue and Depression you’re having? I took Paxil for anxiety/depression last spring briefly, and I’m on it again, and it has helped emensely with the overwhelming fatigue I was having. I’m in treatment for a recurrence right now and feel alot better then I did while going through chemo/rads the first time with taking nothing. I’m finding I’m much more active and less moody, even though we are going after this bugger a second time. There are obviously down days, but they’re not as bad since starting on the Paxil again. I’m on the lowest dose at 10mg. And the "weepy" days are far and few between now. We do have one coming Sunday, a freind of mine is coming over to buzz my hair….Not something I’m looking forward to…but I feel necessary for me..Maybe that will be a Xanax day as well ;-( I’m just getting to my second AC this next Friday {1/31} Then 2 more after that, then 4 rounds of Taxotere, and that should have me finishing up around the 6th of June… {annie crossing her fingers} Take care there dear HTH… God bless you annie Ultimately…..we know deeply that the other side of every fear is a freedom. "Courage"…is *fear* that has said it’s prayers.

Response:

I’m not weepy at all.  Just tired.  Very tired.  And having anxiety issues. Can’t sleep.  I wake up with my teeth all clenched together and with a headache.  Can’t concentrate.  Can’t get motivated because I just feel tired. I am trying to get in to see a shrink.  I am already taking zoloft but maybe it’s not the right drug for me.  The onc prescribed it and it could just be a low dosage.  Or maybe I am just tired and not depressed.  Or maybe I am depressed because I am tired and can’t get anything done.  LOL. My daughter and I got temporary tattoos and she decorated my head once I lost my hair.  Maybe you can get a henna kit and do something fun while you have no hair.  I’m glad you are dealing with it so well. Catherine

– Hide quoted text — Show quoted text – I don’t know if this will help you or not dear.. But you mentioned Fatigue and Depression you’re having? I took Paxil for anxiety/depression last spring briefly, and I’m on it again, and it has helped emensely with the overwhelming fatigue I was having. I’m in treatment for a recurrence right now and feel alot better then I did while going through chemo/rads the first time with taking nothing. I’m finding I’m much more active and less moody, even though we are going after this bugger a second time. There are obviously down days, but they’re not as bad since starting on the Paxil again. I’m on the lowest dose at 10mg. And the "weepy" days are far and few between now. We do have one coming Sunday, a freind of mine is coming over to buzz my hair….Not something I’m looking forward to…but I feel necessary for me..Maybe that will be a Xanax day as well ;-( I’m just getting to my second AC this next Friday {1/31} Then 2 more after that, then 4 rounds of Taxotere, and that should have me finishing up around the 6th of June… {annie crossing her fingers} Take care there dear HTH… God bless you annie Ultimately…..we know deeply that the other side of every fear is a freedom. "Courage"…is *fear* that has said it’s prayers.

Response:

<< I called the doc and they are sending me for another mammogram.  I just had one in October so I don’t see what the big deal is there.   I  wonder if the new technique, developed by Dr. Susan Love, of nipple aspiration might be helpful? << I know it is normal to have more trouble coping AFTER bc is over then while you are going thru with it, but it’s such a pain in the you know what!  LOL. Yeah, but is bc ever really over?  I think it is very important that we monitor any changes that are seen.  Hopefully, they are not bc related, but if one has had bc, it is important to rule out that they are not.

Response:

I didn’t get a chance to talk to the doc but know that I will follow up with the surgeon after the mammogram.  It worries me that it is only one.  If it was both, then hormones would make sense I guess. I don’t know if it’s ever over.  I want to go in denial, live life to the fullest and not keep looking behind me or worrying about the future.  I am having anxiety and depression or else I am tired all the time because of physical reasons.  It’s hard to tell the difference sometimes or know which comes first.  Depression or fatigue?  I’m tired of being tired.  I joined a gym and started weight lifting but went and started getting lymphedema in my arm.  So I take a break and somehow can’t seem to find time to get back over there.  It’s good to know that I can always come back here and whine though when I need to. :) Catherine

– Hide quoted text — Show quoted text – << I called the doc and they are sending me for another mammogram.  I just had one in October so I don’t see what the big deal is there.   I  wonder if the new technique, developed by Dr. Susan Love, of nipple aspiration might be helpful? << I know it is normal to have more trouble coping AFTER bc is over then while you are going thru with it, but it’s such a pain in the you know what! LOL. Yeah, but is bc ever really over?  I think it is very important that we monitor any changes that are seen.  Hopefully, they are not bc related, but if one has had bc, it is important to rule out that they are not.

Response:

I completed radiation 20 months ago.  I had (supposedly)an atypical amount of edema– the radiated breast was about 2 cup sizes larger than the other for about a year!  It is still tan (and a very rubbery texture).  Anyway- I noticed a very thick, grainy white discharge form the nipple about 6-8 months ago- and was able to express more.  The medical and radiation oncologists said they had no idea what it was(!)  I went back to my surgeon- she took one look and said- "That’s just ecstasia" (a benign collection of dead cells from the inflammation caused by radiation).  When I went for my last mammogram, the radiologist said that it (ecstasia) was very common. I don’t know why the oncologists didn’t know about this, but I informed them. Hopefully, you have a similar situation.  jeannette

– Hide quoted text — Show quoted text – Just wondering if this is normal or at least somewhat typical: I had bc in the right breast.  Surgery 1/02, chemo and radiation completed 9/02.  Had a hysterectomy/oopherectomy 9/01.  Am on Arimidex. Anyway, the right breast has a white, flaky discharge coming from the nipple.  Nothing on the left breast.  I would think that whatever milk glands are left wouldn’t be producing anything since I have no estrogen. Last mammogram 10/02 was fine. Is this normal? Catherine

Response:

I called the doc and they are sending me for another mammogram.  I just had one in October so I don’t see what the big deal is there.  While I could see wetness last night under the white stuff, I couldn’t make it any ‘worse’. It’s also fine today and nothing at all.  Strange. Thanks for the input.  I expect my hormones and glands and everything else is really off kilter so lord only knows what is happening now.  Seems like a blood test would tell the doc more then a mammogram but I don’t do that again till March.   I am having a lot of anxiety these days for no reason. I know it is normal to have more trouble coping AFTER bc is over then while you are going thru with it, but it’s such a pain in the you know what!  LOL. Thanks again, Catherine

– Hide quoted text — Show quoted text – Just wondering if this is normal or at least somewhat typical: I had bc in the right breast.  Surgery 1/02, chemo and radiation completed 9/02.  Had a hysterectomy/oopherectomy 9/01.  Am on Arimidex. Anyway, the right breast has a white, flaky discharge coming from the nipple.  Nothing on the left breast.  I would think that whatever milk glands are left wouldn’t be producing anything since I have no estrogen. Last mammogram 10/02 was fine. Is this normal? Catherine Although breast development is spurred by estrogen, lactation is dependent mostly on prolactin, a pituitary hormone.  Some medicines may increase prolactin production, as can pituitary tumors. Have you tried sliding your thumb along the breast from the periphery toward the nipple to sse if that will express milk?  You would need to to that in spokes all around the breast for a thorough examination, but it might be aditional information. See your doctor, but don’t panic in the meantime.

Response:

It’s probably nothing.  These days though, I feel like I should tell somebody every little thing if it is just a change.  I had a colonoscopy earlier this week.  Will hear results from that on monday.  Things haven’t been right with my digestive system since chemo. I’m glad to hear you are doing well and feeling more encouraged! Catherine

– Hide quoted text — Show quoted text – <<  I would think that whatever milk glands are left wouldn’t be producing anything since I have no estrogen. Last mammogram 10/02 was fine. Is this normal? Hi Catherine, from what you describe it doesn’t sound ‘normal.’  Have you had a chance to call your surgeon or oncologist about this?  I don’t know enough about nipple discharge to know whether it would be of concern or not. (Although my nipple changed daily when it began to change at time of dx–I never had a discharge–it was becoming inverted).  However, since you have had breast cancer already in one breast, there is an increased risk of getting a malignancy on the other side.  From what I’ve read most nipple discharge is not associated with breast cancer and is related to hormonal changes.  Even if you’ve had an hysterectomy, you can still have other hormonal changes. You might want to do a web search re such if you have not already–using terms "breast cancer" "nipple discharge"   http://www.google.co.uk/search?q=%22breast+cancer%22+%22nipple+discharge %22&ie=ISO-8859-1&hl=en&btnG=Google+Search&meta= I sure hope it isn’t anything to be concerned about, though.  My best thoughts and prayers are with you.  Take care.

Response:

Just wondering if this is normal or at least somewhat typical: I had bc in the right breast.  Surgery 1/02, chemo and radiation completed 9/02.  Had a hysterectomy/oopherectomy 9/01.  Am on Arimidex. Anyway, the right breast has a white, flaky discharge coming from the nipple.  Nothing on the left breast.  I would think that whatever milk glands are left wouldn’t be producing anything since I have no estrogen. Last mammogram 10/02 was fine. Is this normal? Catherine

Although breast development is spurred by estrogen, lactation is dependent mostly on prolactin, a pituitary hormone.  Some medicines may increase prolactin production, as can pituitary tumors. Have you tried sliding your thumb along the breast from the periphery toward the nipple to sse if that will express milk?  You would need to to that in spokes all around the breast for a thorough examination, but it might be aditional information. See your doctor, but don’t panic in the meantime.

Response:

Just wondering if this is normal or at least somewhat typical: I had bc in the right breast.  Surgery 1/02, chemo and radiation completed 9/02.  Had a hysterectomy/oopherectomy 9/01.  Am on Arimidex. Anyway, the right breast has a white, flaky discharge coming from the nipple.  Nothing on the left breast.  I would think that whatever milk glands are left wouldn’t be producing anything since I have no estrogen. Last mammogram 10/02 was fine. Is this normal? Catherine

Response:

<<  I would think that whatever milk glands are left wouldn’t be producing anything since I have no estrogen. Last mammogram 10/02 was fine. Is this normal? Hi Catherine, from what you describe it doesn’t sound ‘normal.’  Have you had a chance to call your surgeon or oncologist about this?  I don’t know enough about nipple discharge to know whether it would be of concern or not. (Although my nipple changed daily when it began to change at time of dx–I never had a discharge–it was becoming inverted).  However, since you have had breast cancer already in one breast, there is an increased risk of getting a malignancy on the other side.  From what I’ve read most nipple discharge is not associated with breast cancer and is related to hormonal changes.  Even if you’ve had an hysterectomy, you can still have other hormonal changes.  You might want to do a web search re such if you have not already–using terms "breast cancer" "nipple discharge"   http://www.google.co.uk/search?q=%22breast+cancer%22+%22nipple+discharge %22&ie=ISO-8859-1&hl=en&btnG=Google+Search&meta=   I sure hope it isn’t anything to be concerned about, though.  My best thoughts and prayers are with you.  Take care.

Response:

mercury ruling / California

Question:

- Hide quoted text — Show quoted text – Thats good.. i have wondered what the metallic taste in my fillings is if there is no effect. The times i HAVE directly asked the dentist whats in the filling has been met with generally a blank desire not to talk abou the subject. Doctors generally also it seems hve no real interest in the subject. Bravo for the Judge. You’re joking, aren’t you? Nope why do you ask? I don’t believe you can taste mercury in your mouth. The tongue might feel them as different coz they conduct electricity, unlike enamel. The judge is just pandering to the silly Californian govt that has nothing better to do. Hence the expression, "Only in California." I used to know a bunch of medical toxicologists, and they were perfectly happy with their amalgam fillings. The biggest danger of amalgam fillings are to the dentist breathing the vapour when he mixes the amalgam. For patients, the only minute risk is in having them put in and taken out. If you have them, leave them in, as they are doing no harm, but if you have them out, you risk a small blip in your mercury metabolism. Yes I donot know what the metallic taste is but i am very sensitive to these things at times and it is a definate effect only on the teeth which have metal fillings and the front tooth i have with a metal core. There is also an active effect if i put say a piece of aluminum in contact with the filling and that is definately more like a v.unnatural polar type effect. The metallic taste is clearly obvious to me after contact with the aluminium. I have had most of the fillings changed to non-metallic (the dentist still didn’t want to tell me what was in the white filling .. and epoxy i reckon).. the effect was significant. Some of my fillings were poorly done and may have been encouraging side effects. When a very polluted truck or bus passes by my metal fillings taste bad and hurt.. I think they are very bad things regardless of experts who have paper knowledge I have practical experience and know that there is something very bad about them. I do not believe that the quantity of mercury absorbtion into the blood/tissues is the only concern.. I believe the particular tissues affected are essential to the matter. I believe that other chemicals can act as synergists with the mercury amalgam fillings and that lots of these relationships are beyond the technical abilities of toxicologists to quantify.. Would you feed to your baby regular amounts of mercury.. of course not. .. why if the amounts were small .. because there is no obvious health benefit and the risk intuitively seems too high to accept. I personally think its a good move to notify about he use of the amalgam.. there is something about the disappearance of a metal filling through decay etc that just seems far too much risky than is neccesary.. Metal fillings are hardly attractive, i believe there is a better all round alternative not far away. I think most people would accept that the Dental profession has a somewhat brutal past.. once upon a time the most terrifying thing for most children at school was a visit the dental nurse (the torture chamber). What is so nice about metal (~50% mercury) fillings??

Nuttin!! http://www.lichtenberg.dk/mercury_vapour_in_the_oral_cavit.htm http://mercury1.50megs.com/html/amalgams.html http://www.mercuryfilling.com/ http://www.algonet.se/~leif/FUSCIFCT.html   http://www.ucalgary.ca/~gauntlet/eg/news/stories/20010329/news05.html * Mercury damages nerve cells http://www.fp.ucalgary.ca/unicomm/Gazette/April4-01/mercury.htm * Mercuy http://www.fp.ucalgary.ca/unicomm/news/March_01/mercury.htm * Researchers present evidence http://www.fp.ucalgary.ca/unicomm/Gazette/April4-01/april2.pdf * PDF-File   http://movies.commons.ucalgary.ca/mercury/ Jan

Response:

- Hide quoted text — Show quoted text -FOR IMMEDIATE RELEASE: California Judge Approves Landmark Warning on Mercury Use in Dentistry. (San Francisco, CA) – For the first time anywhere, dentists will be required to post a warning about the dangers of mercury in their dental fillings.  A California Superior court judge finalized the language for the warning to be posted in dentists’ offices here today. The warning will read as follows: Notice to Patients, Proposition 65: Warning on dental amalgams, used in many dental fillings, causes exposure to mercury, a chemical known to the state of California to cause birth defects or other reproductive harm. Root canal treatments and restorations including fillings, crowns and bridges, use chemicals known to the state of California to cause cancer. The U.S. Food and Drug Administration has studied the situation and approved for use all dental restorative materials. Consult your dentist to determine which materials are appropriate for your treatment. The exact language of the warning was argued and then finalized before Superior Court Judge James A. Robertson II between the California Dental Association, the largest constituent organization of the American Dental Association and Attorney Shawn Khorrami (Cor-ahm-mee). The agreement requires its member dentists to warn patients about the toxic dangers of mercury dental fillings and root canals. The agreement also allows non-CDA dentists to opt in to the agreement and post the warning. The warning is the result of a lawsuit filed by The Law Offices of Shawn Khorrami on behalf of As You Sow, a not-for-profit foundation dedicated to advocacy and activism in the public interest. "This is the first admission by organized dentistry that amalgams pose a potential health risk," says Shawn Khorrami, lead attorney. "The only problem is that it’s about 100 years too late." This California consent judgment follows on the heels of recent lawsuits filed in Georgia, Texas, Ohio and Los Angeles, California charging that mercury fillings placed in a woman’s mouth contributed to the autism of her child, as well as lawsuits in Maryland, California, and New York charging the American Dental Association with misrepresenting amalgam dental fillings as "silver."  The lawsuits basically allege that such fillings actually contain approximately 50% mercury by weight. They cause continuous, daily exposure to mercury and, thereby pose substantial health risks to certain users. Mercury, a highly toxic substance, is the most widely used substance in dental fillings today. The use of mercury-based thimerosal in vaccines also has been the source of the recent controversy in the Homeland Security legislation. Khorrami filed the lawsuit against Roger Fieldman D.D.S., Inc., the Citadel Dental Group, Inc.  dental offices, dental laboratories and private dental schools and training programs with more than nine employees. The suit won the enforcement of Proposition 65, Safe Drinking Water and Toxics Enforcement Act [Health & Safety Code