MS, insomnia, anxiety
Question:
Scott, I’m convinced if I got on Betaseron right away when diagnosed, I’d still be vertical! I was diagnosed in ‘91, before the FDA released Betaseron, in ‘93. This is a sub-q injection, (just under the skin). The ABC meds work pretty much the same. It’s which one you deal with the side effects best, you go with. There’s side effects, sure. But there’s ways to combat them. Neurologists have too many irons in the fire to focus on just one disease. That. and a new med… I’ve found a few things that work, for me. Injection site reactions; wipe off the exterior of the needle before injection. Med on the outside of body will cause necrosis, (skin breakdown). To reduce side effects; drag out the injection rate, to 1-2 minutes. Not near the shock on the body. Holding the syringe steady is the key. I see the Plasma Exchange Therapy as being the hot ticket in research. This has been around for decades. When the FDA clears it for MS is any ones guess. See http://www.mayo.edu Good luck Scott. You ALL stay +++++. The cure is just around the corner. We all can hang on a little longer. Doug P.S. My links page has plenty of info.
Checkout My Home Page thanks
Response:
In article <28595-384A083C…@storefull-251.iap.bryant.webtv.net>, ICE2…@webtv.net (Doug Lewis) writes: >Med on the outside of body will cause necrosis, (skin >breakdow
Makes you wonder what it does to you inside! Kathi
Response:
Tee wrote: > Sometimes even if I’m so tired I can’t keep my eyes open, the minute I lay > down my mind starts turning and churning and my body will start doing the > jumping jig.. leg, leg here and an arm, arm there, here a twitch there a > twich every where a jump, jump.. those are the nights that I will double up > to sleep.. problem is that a lot of times I’m still "drunk" the next day… > I will do this for pain too… I hate doing it.. but sometimes it’s so bad I > do what it takes…
(snipped here and there) Tee Have you talked to your doc about this?? This is a bit different from the original post which I won’t answer until I read all the responses to see if I need to. There are medications to help with the jumping and pain that occurs when you relax. And they often work at minimum doses. And they may not be the kind of stuff you think – no pain meds or sleep meds. Do a search on restless leg syndrome and see what you think. L
Response:
Dear Tee, > I find that things such as eating too late at night (right before bed) seem to > ’cause’ my nightime leg jerks… (I try and eat my chocolate ice cream at least > a few hours before bed 
Pam – Hide quoted text — Show quoted text -> Tee wrote: > > Sometimes even if I’m so tired I can’t keep my eyes open, the minute I lay > > down my mind starts turning and churning and my body will start doing the > > jumping jig.. leg, leg here and an arm, arm there, here a twitch there a > > twich every where a jump, jump.. those are the nights that I will double up > > to sleep.. problem is that a lot of times I’m still "drunk" the next day… > > I will do this for pain too… I hate doing it.. but sometimes it’s so bad I > > do what it takes… > (snipped here and there)
Response:
LaVonne, I see a new Neuro in the morning.. I will mention it to him. Hopefully he can suggest something. Thank you for your time and I’m off to do a search on restless legs! Thanks again, Tee — MS MounTain http://www.dsgnworks.com/~msmt/ RedLady’s Home http://www.angelfire.com/ky/redlady/index.html "LaVonne Murphy" <mscan…@att.net> wrote in message
news:384AD65F.C536D8F0@att.net… | Tee wrote:
| | > Sometimes even if I’m so tired I can’t keep my eyes open, the minute I lay | > down my mind starts turning and churning and my body will start doing the | > jumping jig.. leg, leg here and an arm, arm there, here a twitch there a | > twich every where a jump, jump.. those are the nights that I will double up | > to sleep.. problem is that a lot of times I’m still "drunk" the next day… | > | > I will do this for pain too… I hate doing it.. but sometimes it’s so bad I | > do what it takes… | (snipped here and there) | | Tee | | Have you talked to your doc about this?? This is a bit different from | the original post which I won’t answer until I read all the responses to | see if I need to. | | There are medications to help with the jumping and pain that occurs when | you relax. And they often work at minimum doses. And they may not be | the kind of stuff you think – no pain meds or sleep meds. Do a search | on restless leg syndrome and see what you think. | | L
Response:
"Pam and Erik Perkins" <erikperk…@earthlink.net> wrote in message news:384BF5A6.A275653C@earthlink.net… | Dear Tee, | | | > I find that things such as eating too late at night (right before bed) seem to | > ’cause’ my nightime leg jerks… (I try and eat my chocolate ice cream at least | > a few hours before bed | | Pam Aaaaakkkk! Pam you would not believe that I had a spoonful of ice cream (cherry vanilla) half way to my mouth when I read this.. LOL All of the sudden I felt like my mother was fussing at me! *giggle* Well it *WAS* good ice cream! :o))))) <— those are chins.. not smiles! LOL Tee | | > Tee wrote:
| > | > > Sometimes even if I’m so tired I can’t keep my eyes open, the minute I lay | > > down my mind starts turning and churning and my body will start doing the | > > jumping jig.. leg, leg here and an arm, arm there, here a twitch there a | > > twich every where a jump, jump.. those are the nights that I will double up | > > to sleep.. problem is that a lot of times I’m still "drunk" the next day… | > > | > > I will do this for pain too… I hate doing it.. but sometimes it’s so bad I | > > do what it takes… | > (snipped here and there) | | | |
Response:
Tee. I had this same problem. Was awful. I spoke to my neuro and he put me on Permax. Works wonders. I think I wrote about it, but can’t remember. Dana
Response:
Dana, I will look this up before my next Neuro appt. Thanks for the info! Tee — MS MounTain http://www.dsgnworks.com/~msmt/ RedLady’s Home http://www.angelfire.com/ky/redlady/index.html "dana dawn" <DanaD…@webtv.net> wrote in message
news:22034-3859ACCA-118@storefull-162.iap.bryant.webtv.net… | Tee. | I had this same problem. Was awful. I | spoke to my neuro and he put me on | Permax. Works wonders. I think I | wrote about it, but can’t remember. | Dana |
Response:
It’s almost 4 a.m. and I can’t sleep. When I finally do go to bed, I know I’ll be tossing, turning and having spasms for a couple of hurs before I will finally fall asleep. I have taken my sleping pill, but I might as well have drunk coffee! * Sent from RemarQ http://www.remarq.com The Internet’s Discussion Network * The fastest and easiest way to search and participate in Usenet – Free!
Response:
I was first given Xanax, for anxiety, it made me sleepy. when it quit working, I was switched to Baclofen for the pain from muscle spasms and Ambien to sleep. that combo knocks me out. You might ask your neuro about them next time you go. | /| —- —- | / | | | | | ~~~~~~~~BECK~~~~~~~~ | | | | | | "Faith ends where worry begins" | | —- —-
Response:
I’m interestedto knoe that there is someone elsewho ssufersthiswierdcombination.I am always tired especiakky after exercise or thinking dfeply, yet I needsomething to sleep or rest. Rose "Kathi Matthews" <kamatth…@AOL.COM> wrote in message news:
<19991204090808.07314.00000…@ngol07.aol.com>… – Hide quoted text — Show quoted text -> In article <19991203212159.28971.00000…@ng-fc1.aol.com>, mswo…@aol.com > (MsWompa) writes: > >scott , you would think that with out fatigued I get I would sleep great – > >but > >like you – I have insomnia at varying times. I too will "over medicate" to > >get > >to sleep either w/ tylenol PM or lorazepam. I hate doing it but am too > >ashamed > >to tell my doc what is going on. > Why ashamed? He/she/it could give you something better to get to sleep with. > Lorazepam is very short acting. > Kathi
Response:
On Tue, 11 Jan 2000 17:35:23 -0800, amalia <amasotNOamS…@yahoo.com.invalid> wrote: >It’s almost 4 a.m. and I can’t sleep. When I finally do go to bed, I >know I’ll be tossing, turning and having spasms for a couple of hurs >before I will finally fall asleep. I have taken my sleping pill, but I >might as well have drunk coffee!
Hi Amalia… I’ve written about this before… I use Diazapam (Valium) as my sleeping pill… get 5 mg tabs and cut them in half for two individual doses of 2.5 mgs. This stuff works great!! First, you shut your mind off. Second, your muscles shut down as well!! No spasms, shakes, tremour! And your dose is so low, you wake up the next morning without a drugged up feeling!! Good luck!
Response:
In article <387deec5.1484…@newshost.capecod.net>, not.cdouglas.nomores…@not.capecod.net (Charles Douglas) writes: >I use Diazapam (Valium) as my sleeping pill… get 5 mg tabs and cut >them in half for two individual doses of 2.5 mgs.
It’s great you can get by with such a small dose. Kathi
Response:
Hello Out There, I was diagnosed in ‘92 with multiple sclerosis. Over the past year, I’ve been having a lot of mood swings, and some sleeplessness, as well as a fair amount of anxiety (though I’ve ALWAYS been a "worrier" and "anxious"). Recently, about 2 months ago, I started having more major sleep problems, and even worse over the past month. My doc put me on ambien until my HMO could decide whether to grant me a sleep study or not. I’ve been having anxiety attacks, high heart rates, especially near bedtime. Lately, very depressed moods, feelings of "coming out of my skin" at random times. Occasionally, thoughts that I’d rather just "go to sleep forever", but no serious suicidal tendencies. One of my unwise practices has been (and I’m usually crazed, half-asleep when it occurs at 2 or 3 AM) is to overmedicate myself, on purpose, basically with the notion that I need a "chemical CLUB" over the back of the head to fall asleep. Sometimes double doses of sleeping pills, sometimes purposely mixed with a shot of booze to intensify the effect. At times, at night, I’ve been hallucinating while awake, yet I’m getting at least several hours of sleep per night. Has anyone out there experienced similar effects when sleep-deprived, i.e. purposely over-medicating? Any MS sufferers out there? I go to see my neurologist on Monday, and I might be put on beta interferon for my MS. Any thoughts are appreciated. -Scott
Response:
Scott, I too have sleep problems and anxiety problems.. over medicate? yes… Sometimes even if I’m so tired I can’t keep my eyes open, the minute I lay down my mind starts turning and churning and my body will start doing the jumping jig.. leg, leg here and an arm, arm there, here a twitch there a twich every where a jump, jump.. those are the nights that I will double up to sleep.. problem is that a lot of times I’m still "drunk" the next day… I will do this for pain too… I hate doing it.. but sometimes it’s so bad I do what it takes… It’s not safe and I dont’ advise it to be done and would tell anyone else *not* to… but at the time… well, I just don’t think.. I want sleep or to be out of pain or both… Tee — MS MounTain http://www.dsgnworks.com/~msmt/ RedLady’s Home http://www.angelfire.com/ky/redlady/index.html "Scott Speck-Lesh" <sp…@erols.com> wrote in message
news:829p2e$jj8$1@autumn.news.rcn.net… | Hello Out There, | | I was diagnosed in ‘92 with multiple sclerosis. Over the past year, I’ve | been having a lot of mood | swings, and some sleeplessness, as well as a fair amount of anxiety (though | I’ve ALWAYS been | a "worrier" and "anxious"). Recently, about 2 months ago, I started having | more major sleep | problems, and even worse over the past month. My doc put me on ambien until | my HMO could | decide whether to grant me a sleep study or not. I’ve been having anxiety | attacks, high heart | rates, especially near bedtime. Lately, very depressed moods, feelings of | "coming out of my | skin" at random times. Occasionally, thoughts that I’d rather just "go to | sleep forever", but | no serious suicidal tendencies. | | One of my unwise practices has been (and I’m usually crazed, half-asleep | when it occurs at | 2 or 3 AM) is to overmedicate myself, on purpose, basically with the notion | that I need a "chemical | CLUB" over the back of the head to fall asleep. Sometimes double doses of | sleeping pills, | sometimes purposely mixed with a shot of booze to intensify the effect. | | At times, at night, I’ve been hallucinating while awake, yet I’m getting at | least several hours of | sleep per night. | | Has anyone out there experienced similar effects when sleep-deprived, i.e. | purposely | over-medicating? Any MS sufferers out there? I go to see my neurologist on | Monday, and | I might be put on beta interferon for my MS. Any thoughts are appreciated. | | -Scott | | |
Response:
scott , you would think that with out fatigued I get I would sleep great – but like you – I have insomnia at varying times. I too will "over medicate" to get to sleep either w/ tylenol PM or lorazepam. I hate doing it but am too ashamed to tell my doc what is going on. I suffer from mood swings also (dx with bi polar in 1996). My bi polar is in control for the most part. write back any time j
Response:
>Has anyone out there experienced similar effects when sleep-deprived, i.e. >purposely >over-medicating? Any MS sufferers out there?
Hi Scott, I also have problems with insomnia. I do take ambien to sleep, but it dosen’t work anymore. Sometimes, although I may be sleepy, I will stay up and try to get housework done. I do this because I’m afraid if I go to sleep I won’t feel like doing it when I wake up. If I’m working on any kind of project I do the same thing. I just don’t want to stop if I have the energy to do something no matter what time it is. I hope this makes sense to you. I don’t drink, but I might have to try that shot of booze and see if it works. Debbie
Response:
I fall asleep, no trouble, in front of the TV every night. 
But then I get up and have a shower and go to bed, and guess what? I can’t just go to sleep. 
My legs jump, my skin itches, my pillow isn’t comfortable, etc. etc. So I read for a while, and when my eyes die for the night, I turn off the light and just lie there. Eventually, of course, I do go to slepp and sleep like a log – until my bladder wakes me a couple of hours later. Then I lie there for a while again, and doze off……. and so on. Then I wonder why I feel tired all day. But I don’t take any drugs to get to sleep. That just makes me feel like I’ve got a hangover as well. Sometimes an ice pack or a paracetamol tablet, or a herbal stress tablet will make all the difference, but usually I just wait, and sometimes meditate. It’s still rest, I guess. Carmel – Hide quoted text — Show quoted text -Tee wrote: > Scott, > I too have sleep problems and anxiety problems.. over medicate? yes… > Sometimes even if I’m so tired I can’t keep my eyes open, the minute I lay > down my mind starts turning and churning and my body will start doing the > jumping jig.. leg, leg here and an arm, arm there, here a twitch there a > twich every where a jump, jump.. those are the nights that I will double up > to sleep.. problem is that a lot of times I’m still "drunk" the next day… > I will do this for pain too… I hate doing it.. but sometimes it’s so bad I > do what it takes… > It’s not safe and I dont’ advise it to be done and would tell anyone else > *not* to… but at the time… well, I just don’t think.. I want sleep or to > be out of pain or both… > Tee > — > MS MounTain > http://www.dsgnworks.com/~msmt/ > RedLady’s Home > http://www.angelfire.com/ky/redlady/index.html > "Scott Speck-Lesh" <sp…@erols.com> wrote in message > news:829p2e$jj8$1@autumn.news.rcn.net… > | Hello Out There, > | > | I was diagnosed in ‘92 with multiple sclerosis. Over the past year, I’ve > | been having a lot of mood > | swings, and some sleeplessness, as well as a fair amount of anxiety > (though > | I’ve ALWAYS been > | a "worrier" and "anxious"). Recently, about 2 months ago, I started > having > | more major sleep > | problems, and even worse over the past month. My doc put me on ambien > until > | my HMO could > | decide whether to grant me a sleep study or not. I’ve been having anxiety > | attacks, high heart > | rates, especially near bedtime. Lately, very depressed moods, feelings of > | "coming out of my > | skin" at random times. Occasionally, thoughts that I’d rather just "go to > | sleep forever", but > | no serious suicidal tendencies. > | > | One of my unwise practices has been (and I’m usually crazed, half-asleep > | when it occurs at > | 2 or 3 AM) is to overmedicate myself, on purpose, basically with the > notion > | that I need a "chemical > | CLUB" over the back of the head to fall asleep. Sometimes double doses of > | sleeping pills, > | sometimes purposely mixed with a shot of booze to intensify the effect. > | > | At times, at night, I’ve been hallucinating while awake, yet I’m getting > at > | least several hours of > | sleep per night. > | > | Has anyone out there experienced similar effects when sleep-deprived, i.e. > | purposely > | over-medicating? Any MS sufferers out there? I go to see my neurologist > on > | Monday, and > | I might be put on beta interferon for my MS. Any thoughts are > appreciated. > | > | -Scott > | > | > |
– " Don’t wait for a light to appear at the end of the tunnel. Stride down there and light the bloody thing yourself." www.cyberwizards.com.au/~carmel www.cyberwizards.com.au/~jaragun
Response:
In article <10604-3849C05…@storefull-615.iap.bryant.webtv.net>, cm…@webtv.net (carol forsythe) writes: >Watch out though cause it works within 15 minutes of taking it. You can >actually take it and stay awake but I’ve been told by family members >that I do some weird things. So get to bed right away.
Doesn’t ambien cause blackouts? That would scare me. Kathi
Response:
>I think that sometimes what we call insomnia is just not being able to >sleep at the "normal" sleep times. I have been going to bed later and >letting myself sleep later. (This only works if you don’t!). I’ve >got into a pattern of 12 to 8:30 with fewer bathroom interruptions.
I believe you are absolutely right. When I think about it I do get about 8 hrs at a time. I just never know if that will happen during the day or at night time. I guess I get more done at night because my house is peaceful after 11:00 also. DGlenn
Response:
Hi Scott, I too have insomnia. I can not into my REM state (sleep past 4 hours). I even had a sleep deprived EEG (where you must stay up for 24 hours prior to your EEG (no problem for me) the technician accussed me of falling asleep at some time because there was absolutely no sign of fatigue. For the last 1 1/2 I have been taking 10mg of ambien and it works well for me. I have tried Elavil and woke up drugged feeling but not with ambien. I have since cut it in half and still works great. No grogginess in am. Watch out though cause it works within 15 minutes of taking it. You can actually take it and stay awake but I’ve been told by family members that I do some weird things. So get to bed right away. Lots of luck, Carol
Response:
In article <95%14.182$w92.2…@newsfeed.slurp.net>, "Tee" <redlady…@dynasty.net> writes: >I will do this for pain too… I hate doing it.. but sometimes it’s so bad I >do what it takes… >It’s not safe and I dont’ advise it to be done and would tell anyone else >*not* to… but at the time… well, I just don’t think.. I want sleep or to >be out of pain or both…
I do the same thing. Sometimes I have terrible trouble getting to sleep, other times I fall asleep at the computer early in the evening, finally give up an go to bed. Very strange. Kathi
Response:
On 04 Dec 1999 02:35:44 GMT, glenn1…@aol.com (Glenn1124) wrote: >I also have problems with insomnia. I do take ambien to sleep, but it dosen’t >work anymore. Sometimes, although I may be sleepy, I will stay up and try to >get housework done. I do this because I’m afraid if I go to sleep I won’t feel >like doing it when I wake up. If I’m working on any kind of project I do the >same thing.
I think that sometimes what we call insomnia is just not being able to sleep at the "normal" sleep times. I have been going to bed later and letting myself sleep later. (This only works if you don’t!). I’ve got into a pattern of 12 to 8:30 with fewer bathroom interruptions. Actually, no one does much after 11 or so — it’s quiet and I can read or write. Kate
Response:
Kate Murphy wrote: > On 04 Dec 1999 02:35:44 GMT, glenn1…@aol.com (Glenn1124) wrote: > >I also have problems with insomnia.
I’m taking 5 mg of Sonata at night. Maybe 2-3 times a month, I’ll have to take another one. But it works for me. also on Zanaflex, 2 times a day.
Response:
In article <19991203212159.28971.00000…@ng-fc1.aol.com>, mswo…@aol.com (MsWompa) writes: >scott , you would think that with out fatigued I get I would sleep great – >but >like you – I have insomnia at varying times. I too will "over medicate" to >get >to sleep either w/ tylenol PM or lorazepam. I hate doing it but am too >ashamed >to tell my doc what is going on.
Why ashamed? He/she/it could give you something better to get to sleep with. Lorazepam is very short acting. Kathi
