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Question:
"Carl J." <c…@europa.lonestar.remove.org> wrote in message > > What do you know about Ambien? I have two friends that have been taking it > > for months! > I think one of the possible side effects is chronic fatigue. They may want > to check on that. Also it is habit forming and you should taper off instead > of quitting cold turkey. I learned that the hard way.
One of my friends is trying to reduce his Ambien use since he had a "stopping" problem with Vicodin he was taking for a THR that had some complications. He reports difficulty sleeping without it. He skips nights but I recommended that he keep taking it nightly as before, but clipping a little more of the pill each day so that the overall daily dose keep getting reduced. > > The hose is a part of the issue. It can act as a lever and in the wrong > > orientation it seems to almost lift the mask right off my face. > Most folks suspend the hose over a rope connected to a hook so that the hose > isn’t a problem.
I tried that initially but had two problems. Water in the hose dripping into my nose and not enough hose to keep the CPAP on the nightstand where I wanted it. I had planned for a much smaller unit than the one I got. > > > The funny thing is that all my friends say I sound a lot more alert since > > starting the CPAP. I can’t feel any difference, though. > Sounds like a good sign though.
It seems so. A number of people have said it, too, so I guess there must be some truth to it. Still, I have dreadful fatique AND sleepiness during the days, despite the CPAP. I guess I should keep a diary to see if it really is helping but I have found that accurate diary logging and incredible attacks of sleepiness are sort of incompatible. Thanks for your input. Much appreciated. Bobby G.
Response:
"Robert Green" <ROBERT_GREEN1…@YAH00.COM> wrote in message
news:bj77ap$dt4$1@bob.news.rcn.net… – Hide quoted text — Show quoted text -> "Carl J." <c…@europa.lonestar.remove.org> wrote in message > > > No one needs more rocks in > > > their knapsack if they are carrying Mr. Apnea on their backs. > > Exactly. I was thinking that also. > > I don’t know how long you’ve been on CPAP > Just a few weeks. > > but it usually gets easier to use the more you use it. > How I wish that was the case. I just made a follow-up with my sleep doc to > discuss my decreasing compliance. Even with heated humidity, my nose still > gets stuffed up very quickly and sinus headaches soon follow.
This is not a good solution, but it has worked for me for over 6 years. Afrin or generic equivalent. Nothing else keeps my nose clear enough to breath through it. It’s hard to – Hide quoted text — Show quoted text -> convince yourself to use a device that you know is going to cause you > blinding headaches. > In addition to that I find it really disturbs my daytime breathing with a > lot of episodes where I have all sorts of deep inhalations and sighs and > rapid breathing episodes. > Then there’s the claustrophobia. It seems to be getting worse instead of > better even though I try to watch TV with the mask on just to get used to > it. It’s a Respironics (there’s no model number on it) and the double > rubber seal blocks my nostrils, causing a sort of smothering feeling. I am > going to call my DME supplier tomorrow and insist on the gel mask my sleep > doc prescribed. This one has a lot of leaks around the eyes and I have > awakened twice in the last week with eyes so dry I actually could not see. > I get the bad feeling that my CPAP is breaking more body systems than it’s > fixing. > > It’s still a nuisance but hopefully no more than that. > It’s more than a nuisance for me. It’s been an unpleasant experience that > seems to be getting more so each day. > Bobby G.
Response:
In article <bj85hg$eu…@bob.news.rcn.net>, Robert Green wrote: > "Carl J." <c…@europa.lonestar.remove.org> wrote in message ><snip> >> When I started CPAP I noticed right away that some days were better but >> it took my about 2 months before I was consistently getting better sleep >> than I was without it. The only way I was able to use CPAP at first was >> by taking Ambien. However from what I now know about Ambien I wouldn’t >> take it longer than a week or so. > What do you know about Ambien? I have two friends that have been taking it > for months!
I think one of the possible side effects is chronic fatigue. They may want to check on that. Also it is habit forming and you should taper off instead of quitting cold turkey. I learned that the hard way. > The hose is a part of the issue. It can act as a lever and in the wrong > orientation it seems to almost lift the mask right off my face.
Most folks suspend the hose over a rope connected to a hook so that the hose isn’t a problem. > > The funny thing is that all my friends say I sound a lot more alert since > starting the CPAP. I can’t feel any difference, though.
Sounds like a good sign though.
Response:
"Carl J." <c…@europa.lonestar.remove.org> wrote i > I understand all the technical issues regarding google and the noarchive > flag but what I don’t understand is why people make a big deal about > it.
Nor do I. It seems to put people on the defensive. I know that’s how I reacted when I read through the most recent messages. > If you have noarchive set all you have to do is not send a person > from google a reply or else copy them a reply to email. Google folks > might miss a post or two but it’s their right to post from where ever the > heck they want to and not feel intimidated.
We agree about that. I know I was pretty intimidated by the prospect of spending every night for the rest of my life hooked up to a vacuum cleaner when I first found out I had apnea. Maybe it’s conceited to think so, but I’ll bet plenty of people feel the same way. No one needs more rocks in their knapsack if they are carrying Mr. Apnea on their backs. > People here should not be getting "upset" about any of this stuff. It’s not a > religious issue. It’s not a moral issue. Nothing in this group is.
Nothing *should* be, I’ll grant you that. > Nobody should be reluctant to post their opinions . . .
Amen. Bobby G.
Response:
- Hide quoted text — Show quoted text -In article <biru44$6t…@bob.news.rcn.net>, Robert Green wrote: > "Carl J." <c…@europa.lonestar.remove.org> wrote i >> I understand all the technical issues regarding google and the noarchive >> flag but what I don’t understand is why people make a big deal about >> it. > Nor do I. It seems to put people on the defensive. I know that’s how I > reacted when I read through the most recent messages. >> If you have noarchive set all you have to do is not send a person >> from google a reply or else copy them a reply to email. Google folks >> might miss a post or two but it’s their right to post from where ever the >> heck they want to and not feel intimidated. > We agree about that. I know I was pretty intimidated by the prospect of > spending every night for the rest of my life hooked up to a vacuum cleaner > when I first found out I had apnea. Maybe it’s conceited to think so, but > I’ll bet plenty of people feel the same way. No one needs more rocks in > their knapsack if they are carrying Mr. Apnea on their backs.
Exactly. I was thinking that also. I don’t know how long you’ve been on CPAP but it usually gets easier to use the more you use it. It’s still a nuisance but hopefully no more than that. >> People here should not be getting "upset" about any of this stuff. It’s > not a >> religious issue. It’s not a moral issue. Nothing in this group is. > Nothing *should* be, I’ll grant you that. >> Nobody should be reluctant to post their opinions . . . > Amen. > Bobby G.
I think all that is just common sense. And I see you do too. Later, Carl
Response:
"Carl J." <c…@europa.lonestar.remove.org> wrote in message > > No one needs more rocks in > > their knapsack if they are carrying Mr. Apnea on their backs. > Exactly. I was thinking that also. > I don’t know how long you’ve been on CPAP
Just a few weeks. > but it usually gets easier to use the more you use it.
How I wish that was the case. I just made a follow-up with my sleep doc to discuss my decreasing compliance. Even with heated humidity, my nose still gets stuffed up very quickly and sinus headaches soon follow. It’s hard to convince yourself to use a device that you know is going to cause you blinding headaches. In addition to that I find it really disturbs my daytime breathing with a lot of episodes where I have all sorts of deep inhalations and sighs and rapid breathing episodes. Then there’s the claustrophobia. It seems to be getting worse instead of better even though I try to watch TV with the mask on just to get used to it. It’s a Respironics (there’s no model number on it) and the double rubber seal blocks my nostrils, causing a sort of smothering feeling. I am going to call my DME supplier tomorrow and insist on the gel mask my sleep doc prescribed. This one has a lot of leaks around the eyes and I have awakened twice in the last week with eyes so dry I actually could not see. I get the bad feeling that my CPAP is breaking more body systems than it’s fixing. > It’s still a nuisance but hopefully no more than that.
It’s more than a nuisance for me. It’s been an unpleasant experience that seems to be getting more so each day. Bobby G.
Response:
- Hide quoted text — Show quoted text -In article <bj77ap$dt…@bob.news.rcn.net>, Robert Green wrote: > "Carl J." <c…@europa.lonestar.remove.org> wrote in message >> > No one needs more rocks in >> > their knapsack if they are carrying Mr. Apnea on their backs. >> Exactly. I was thinking that also. >> I don’t know how long you’ve been on CPAP > Just a few weeks. >> but it usually gets easier to use the more you use it. > How I wish that was the case. I just made a follow-up with my sleep doc to > discuss my decreasing compliance. Even with heated humidity, my nose still > gets stuffed up very quickly and sinus headaches soon follow. It’s hard to > convince yourself to use a device that you know is going to cause you > blinding headaches.
My nose is stuffy a lot and that’s one reason I use a Full Face Mask. It makes some people claustrophobic but I haven’t had any problems. > In addition to that I find it really disturbs my daytime breathing with a > lot of episodes where I have all sorts of deep inhalations and sighs and > rapid breathing episodes.
I get the deep inhalations too (using CPAP 18 months) but not very often now. They mostly went away after I decreased the MAX pressure on my autopap. You could try temporarily decreasing your pressure and see if that makes a difference. Since you are new to CPAP it is best to have your doctor involved. So if you like that idea you could mention it to him/her. When I started CPAP I noticed right away that some days were better but it took my about 2 months before I was consistently getting better sleep than I was without it. The only way I was able to use CPAP at first was by taking Ambien. However from what I now know about Ambien I wouldn’t take it longer than a week or so. > > Then there’s the claustrophobia. It seems to be getting worse instead of > better even though I try to watch TV with the mask on just to get used to > it. It’s a Respironics (there’s no model number on it) and the double > rubber seal blocks my nostrils, causing a sort of smothering feeling. I am > going to call my DME supplier tomorrow and insist on the gel mask my sleep > doc prescribed. This one has a lot of leaks around the eyes and I have > awakened twice in the last week with eyes so dry I actually could not see. > I get the bad feeling that my CPAP is breaking more body systems than it’s > fixing.
It is definitely worth trying different mask types. I didn’t like the thought of having my nostrils blocked so I don’t use the nasal pillow mask. Also one common mistake is for people to make their mask _too_ tight. Some times a tighter mask has _more_ leaks. > >> It’s still a nuisance but hopefully no more than that. > It’s more than a nuisance for me. It’s been an unpleasant experience > that seems to be getting more so each day. > Bobby G.
It is very important to stick with CPAP and not give up. However there are some things that might make it easier. Some possiblities include trying a different mask, a lower pressure, or some sleeping aids, or an autopap. If you’re like most people it does get a lot easier with time. Good Luck! Carl
Response:
"Carl J." <c…@europa.lonestar.remove.org> wrote in message
<snip> > > It’s hard to convince yourself to use a device that you know is > > going to cause you blinding headaches. > My nose is stuffy a lot and that’s one reason I use a Full Face Mask. > It makes some people claustrophobic but I haven’t had any problems.
It seems I also open my mouth when I sleep. It may be that I need a full face mask as well. > > In addition to that I find it really disturbs my daytime breathing with a > > lot of episodes where I have all sorts of deep inhalations and sighs and > > rapid breathing episodes. > I get the deep inhalations too (using CPAP 18 months) but not very often now. > They mostly went away after I decreased the MAX pressure on my autopap.
I’m glad to see that they taper off eventually. I find all this weird daytime breathing very discomforting. > You could try temporarily decreasing your pressure and see if that makes a > difference. Since you are new to CPAP it is best to have your doctor involved. > So if you like that idea you could mention it to him/her.
I’ll bring it up when I see her. Thanks. > When I started CPAP I noticed right away that some days were better but > it took my about 2 months before I was consistently getting better sleep > than I was without it. The only way I was able to use CPAP at first was > by taking Ambien. However from what I now know about Ambien I wouldn’t > take it longer than a week or so.
What do you know about Ambien? I have two friends that have been taking it for months! – Hide quoted text — Show quoted text -> > > Then there’s the claustrophobia. It seems to be getting worse instead of > > better even though I try to watch TV with the mask on just to get used to > > it. It’s a Respironics (there’s no model number on it) and the double > > rubber seal blocks my nostrils, causing a sort of smothering feeling. I am > > going to call my DME supplier tomorrow and insist on the gel mask my sleep > > doc prescribed. This one has a lot of leaks around the eyes and I have > > awakened twice in the last week with eyes so dry I actually could not see. > > I get the bad feeling that my CPAP is breaking more body systems than it’s > > fixing. > It is definitely worth trying different mask types. I didn’t like the > thought of having my nostrils blocked so I don’t use the nasal pillow mask. > Also one common mistake is for people to make their mask _too_ tight. Some > times a tighter mask has _more_ leaks.
The hose is a part of the issue. It can act as a lever and in the wrong orientation it seems to almost lift the mask right off my face. > > >> It’s still a nuisance but hopefully no more than that. > > It’s more than a nuisance for me. It’s been an unpleasant experience > > that seems to be getting more so each day. > > Bobby G. > It is very important to stick with CPAP and not give up. However there are > some things that might make it easier. Some possiblities include trying > a different mask, a lower pressure, or some sleeping aids, or an autopap. > If you’re like most people it does get a lot easier with time.
Good Luck! I think I am in line for all of those suggestions. I also get a really nasty pinpoint pain in the back of my throat after using it that is really annoying. I suppose that’s where the airway is most narrow. My friend (who referred me to this doc) says they put him on Ambien and Flonase when he reported the stuffy nose/couldn’t sleep symptoms. The funny thing is that all my friends say I sound a lot more alert since starting the CPAP. I can’t feel any difference, though. Bobby G.
Response:
In article <bilghh$fv…@bob.news.rcn.net>, Robert Green wrote: > Precisely – you’ve been around a while, you know Google’s various issues. > But if you’re a newbie, you may not know *why* you’re being asked to leave,
I understand all the technical issues regarding google and the noarchive flag but what I don’t understand is why people make a big deal about it. If you have noarchive set all you have to do is not send a person from google a reply or else copy them a reply to email. Google folks might miss a post or two but it’s their right to post from where ever the heck they want to and not feel intimidated. > the rocks they can handle. That’s the reason I’m pursuing this at the risk > of upsetting some folks.
People here should not be getting "upset" about any of this stuff. It’s not a religious issue. It’s not a moral issue. Nothing in this group is. Nobody should be reluctant to post their opinions about anything here.
Response:
"Jo" <jo…@yahoo.com> wrote in message
<snip> > I know how frustrating it can be as a regular > newsgroup member to try help people that may not even see your > response (I spent a couple of years on an immigration group as a > regular) so a message that you’ll help but do this first, isn’t going > to offend –
Precisely – you’ve been around a while, you know Google’s various issues. But if you’re a newbie, you may not know *why* you’re being asked to leave, find a new newsreader, install it, configure it and learn how to use it before you can return to receive "complete" help. H*ll, *I* am experienced and I have trouble figuring out precisely why there’s such a strong anti-Google bias here. Google’s imperfect, agreed, but for some, it’s the ONLY option they have. Making it an issue, especially for newbies, seems to me to be placing yet another rock in the knapsack of poor souls who might already be carrying all the rocks they can handle. That’s the reason I’m pursuing this at the risk of upsetting some folks. First impressions count, and support groups really should endeavor to make joining as welcoming an experience as possible. Many people can only access the net through their employer’s internet connection (probably not a good thing but some folks just can’t afford more). More and more companies are "firewalling" (blocking) off direct access to Usenet for a number of reasons. Data security and insulation from viruses are perhaps the foremost reasons: "Many companies have curtailed access to newsgroups, but this has not stopped Usenet-spawned viruses from infiltrating corporate networks, Gullotto says." http://www.cnn.com/2001/TECH/ptech/07/06/usenet.viruses.idg/ And: "The virus author is thought to have released Sobig over the Usenet system, disguising it as a pornographic photograph in an adult news group, according to a person with knowledge of the investigation." http://www.washingtonpost.com/wp-dyn/articles/A32161-2003Aug22.html Another reason that employers put Usenet behind a firewall is to reduce SPAM. Posting your email address publicly, especially in a support newsgroup, is about the surest way I know to get buried alive in the stuff. There are other reasons, though: "The news server uses the standard USENET NNTP port of 119. Many companies block access to this port, assuming that it’s being used for non-business purposes" http://gsbwww.uchicago.edu/computing/bbs/ Yes, folks, employers are well aware that some employees spend large numbers of work hours writing news messages instead of working. :-) (I know *I* did! – but I worked lots of free overtime to compensate – I swear!) > hell, if I can become immune to trolls it’s going to take > more than that! lol
As you imply by using the word "become," this is a process of stepwise-refinement that takes place over time. Learning to ignore the deprecating remarks and sly insults is hard. That’s wisdom (and a tough hide) that one acquires only with burn and scorch marks. :-) It’s unnatural to have your face slapped and not react. It takes discipline and determination not to be provoked. It also takes experience to realize that it’s almost always counterproductive to engage contumacious people. > However, not everyone is like that and I think a lot of people that > find this group are very stressed and becoming desperate in their > search for answers
You are an angel for understanding that, Jo. Often oldtimers forget the fear of that first internet or BBS post. You’re quite empathic to consider the horrible cognitive and emotional effects of a newly acquired sleep disorder as well as a newbie’s potential fear of computers. It’s easy to see how those two problems could combine. And easy to see how asking a new poster to acquire (as well as install, configure and learn to use) a ‘real’ newsreader" to get a response unnerving, to say the least. Heck, I hate even learning how to use minor upgrades!! Many people do. SS-D is never going to run out of newbies, sadly. Treating them well and trying to see things from their perspective helps keep the flames down to a minimum. That’s a definite benefit to ANY support group. > so maybe take it as a personal criticism of their > choice to use google. I think it would be very useful to include a > link to instructions to setting up a news server on a home PC in the > initial message. Here are some that might be helpful: > http://info.connect.com.au/docs/newsconfig/ > http://www.washington.edu/computing/newsgroups/configuring.html > http://www.symitarusers.org/newssetup.html
Thanks, Jo. That’s great information for the people posting from home who aren’t firewalled from direct access to Usenet. For those that are there blocked from Usenet at work there are antifirewall programs. This type of program allows newsreaders like Outlook and Forte to bypass a corporate firewall but I would expect any employee doing so to be subject to summary dismissal if caught. Not good. In some cases, the ISP itself blocks newsgroup access for various reasons: "Telstra today conceded it had disconnected its news-group server from international newsgroups for five days in a move to avert a black ban from the international Usenet community." www.zdnet.com.au/newstech/ebusiness/story/0,2000048590,20272947,00.htm So, there are lots of reasons that people can’t use a standard newsreader to access Usenet, some completely beyond their control. The fact that you and I are having this discussion means that even with all its imperfections Google is "good enough" for many. And with data security issues on the rise, I suspect that more and more people will be forced to turn to Google for usenet access. I wish I could help you with your sleep issues. I am a newbie so it’s going to take a lot more reading and experience before I can hope to help as much as many of the very learned oldtimers here. But there are some things that I know *alot* about (like the increasing tendency of companies and universities to firewall their employees from Usenet) so when such subjects pop up, I’ll chime in. I do thank you for helping me distinguish between fatigue and sleepiness. Until recently it was a distinction I really wasn’t aware of. I hope you find the cause of your tiredness. (Is that fatigued tiredness or sleepy tiredness?) <big grin> I have found my CPAP treatment to be less than completely effective but I will describe the problems in a separate thread. Peace, Bobby G.
Response:
Jo wrote: > NormC <no…@socal.rr.com> wrote in message <news:3F41253E.1030407@socal.rr.com>… >>Jo wrote: >>>Google disclaimer…. My home PC’s hard drive died on me over the >>>weekend, it’s going to be a couple of weeks before I’m back online at >>>home so this is the only option for me at the moment!! 
>>Jo – Thanks for letting us know your reason for usng GOOGLE. Am >>I correct that you did not take offense at Bear’s or my >>indication of the problems with asking for help and reading from >>GOOGLE?
[cut] I know how frustrating it can be as a regular > newsgroup member to try help people that may not even see your > response.
Exactly. Especially if you believe strongly in your ability to help. > (I spent a couple of years on an immigration group as a > regular) so a message that you’ll help but do this first, isn’t going > to offend – hell, if I can become immune to trolls it’s going to take > more than that! lol
I’m pretty much the same way, but there are some very nice knowledgable, experienced people who are very easily offended. > However, not everyone is like that and I think a lot of people that > find this group are very stressed and becoming desperate in their > search for answers so maybe take it as a personal criticism of their > choice to use google. I think it would be very useful to include a > link to instructions to setting up a news server on a home PC in the > initial message. Here are some that might be helpful: > http://info.connect.com.au/docs/newsconfig/ > http://www.washington.edu/computing/newsgroups/configuring.html > http://www.symitarusers.org/newssetup.html
Good idea. Thanks for the links. Bear provided a link to using Free Agent. – Hide quoted text — Show quoted text ->>It is of the utmost importance that you know, with certainty, >>what your blood oxy sat levels are/were. We seem to be finding >>here that a one-night stand in a sleep center is not necessarily >>indicative of how you normally sleep. >>The same is true with regard to the occurence of any central >>apneas, endogenous or from CPAP pressure. Please clarify if your >>PSG (endogenous CA) or titration report (CPAP pressure), >>specifically state "No central apneas". The fact that it may >>have not said anything at all is not acceptable. > It does say it, and I *did* have some central apneas on the titraion, > but not on the other 2 tests….
What immediately comes to my mind is the possiblity that you could be suffering pressure related central apneas. If you had endogenous central apnea, you would have expected it to show during the PSGs. Tell your doctor you been thinking about this (sh*t), and want to see the titration chart(s). It’s important to know exactly what happened during titration. > Test 1 – PSG > 85 arousals, 16 greater than 15 seconds. 37 of these were respiratory > related. No central apneas and no obstructive apneas. > 187 hypopneas mean duration 19.9 seconds, longest 34.5 seconds and > occurred > in all positions.
No comments. > Test 2 – Titration > CPAP was titrated from 4 to 9cm of water pressure. RDI improved with > progressive increases in pressure. Snoring was eliminated at 6cm of > pressure > The overall RDI, however, was 26.2 events per hour. > This included 3 central apneas, 1 obstructive apnea and 111 hypopneas > At 9cm of water, the RDI was 21.6. > *interesting* I *did* have some central apneas!!!
Yes, and it is unclear if these occurred at a particular pressure, and then they backed down on pressure, leaving you with an RDI of 26.2. It is urgent that you know exactly what happened during titration (that is, if you ever want to sleep like a human being again.) We have had at least one person post who experienced CAs at a pressure that did not clear the OSAs. So they backed it down until the CAs went away, leaving him/her with significant OSAs. > Test 3 – Re-titration & before MSLT > 114 arousals, of which 101 were spontaneous and only 12 were > respiratory > event related. Apnea/hypopnea index decreased with progressive > increases in CPAP pressures. At 11cm of water pressure, in REM sleep > there were only 7 hypopneas, with an apnea/hypopnea index of 3.2. The > overall apnea/hypopnea index was 3.3 events per hour > This included 20 hypopneas, no central apneas and no obstructive > apneas.
This makes my earlier issues with CA, pretty much go away, EXCEPT, which titration tells the whole story? The one with CAs or the one without. Appropriate autopap (one week) and recording finger oximeter (at least two nights – it depends on the size of the internal memory) at home could resolve the issue. > I really should go back to my sleep doc and get more information but > he scared me with the surgery statement! lol
If a non-surgeon, diplomated sleep doctor, suggested surgery, and the surgeon is not a friend or relative of the non-surgeon, maybe it was an honest comment. Did you have an endoscopy of your airways. I hope you don’t say "No." > I think I would benefit > from the overnight at home test even if it’s just to rule something > out – like I said before, sometimes it’s the *not* knowing that is > worse.
Absolutely. Maybe it was just the relief of knowing that no real problems were indicated for me, that I stopped having problems. – Hide quoted text — Show quoted text ->>I might mention (again?) that, as a result of my own bad >>experience, I often ask that someone distinguish between being >>sleepy and being tired/fatigued. > Yes, it was your post that really triggered the differentiation for me > and subsequent realization that there’s a difference thanks again > …I think!! (….just teasing!) >>Mine appeared to be reoccuring fatigue, not EDS. I couldn’t hold >>my head up. Couldn’t hold my hands up to the keyboard. So I >>would end up going to my recliner and watching TV. When the >>phone rang, I couldn’t hold it up to my ear for more than seconds. >>Both I and my neurologist (best for the mysteries of OSA) knew >>that I should use an appropriate autopap and recording finger >>oximeter at home for a few days. >>My test showed pressure OK, but very low oxy sat levels, a sign >>of central apnea. Without getting into more details, let me just >>say that I feel lucky that the problem diminished with time, so >>no specific action was taken. > You lucky dog 
Did your neurologist say what direction he would > have headed in for treatment if the symptoms had not diminished?
The only (nearly) routine treatment for CA is a very complex bipap ST. If I can get Bear back here again, he is the only one imtimately familiar with this machine. >>I hope you can see that using and autopap and oximeter can be >>important. > I do see it, I just need to get off my fatigued butt and take some > action!
Yes!!!!!!!!!!!!!!!!!! – Hide quoted text — Show quoted text -> Thanks > Jo
Response:
Jo wrote: > Google disclaimer…. My home PC’s hard drive died on me over the > weekend, it’s going to be a couple of weeks before I’m back online at > home so this is the only option for me at the moment!!
Jo – Thanks for letting us know your reason for usng GOOGLE. Am I correct that you did not take offense at Bear’s or my indication of the problems with asking for help and reading from GOOGLE? Because of the importance of what I just posted to Bruce, I’m going to copy and paste it here also. It is of the utmost importance that you know, with certainty, what your blood oxy sat levels are/were. We seem to be finding here that a one-night stand in a sleep center is not necessarily indicative of how you normally sleep. The same is true with regard to the occurence of any central apneas, endogenous or from CPAP pressure. Please clarify if your PSG (endogenous CA) or titration report (CPAP pressure), specifically state "No central apneas". The fact that it may have not said anything at all is not acceptable. I might mention (again?) that, as a result of my own bad experience, I often ask that someone distinguish between being sleepy and being tired/fatigued. Mine appeared to be reoccuring fatigue, not EDS. I couldn’t hold my head up. Couldn’t hold my hands up to the keyboard. So I would end up going to my recliner and watching TV. When the phone rang, I couldn’t hold it up to my ear for more than seconds. Both I and my neurologist (best for the mysteries of OSA) knew that I should use an appropriate autopap and recording finger oximeter at home for a few days. My test showed pressure OK, but very low oxy sat levels, a sign of central apnea. Without getting into more details, let me just say that I feel lucky that the problem diminished with time, so no specific action was taken. I hope you can see that using and autopap and oximeter can be important. – Hide quoted text — Show quoted text -> Comments in & amongst…. > perh…@aol.com (Bruce Perham) wrote in message <news:ba1c6d3c.0308170739.3ec889ac@posting.google.com>… >>"Jo" <jo…@yahoo.com> wrote in message <news:vjqnmpr0t3237b@corp.supernews.com>… >>>Hi Bruce, I have a similar problem…. I am still constantly fatigued which >>>I thought was going to be relieved by using CPAP!! I did (and still do) >>>have EDS, but that’s improving with time because the CPAP is treating my >>>apneas & hypopneas, my RDI on the last sleep study with CPAP was 3 (reduced >>>from 33 with a pressure of 13) I can stay awake for a whole day now I >>>did, however, have a lot of spontaneous arousals…did your sleep study show >>>anything similar? those surely can’t be helping the body rest & repair >>>itself. >>EDS – this doesn’t ring a bell?? > Excessive daytime sleepiness. Although I note you said in your > original post that you weren’t sleepy during the day before they sent > you for a sleep study. > If I’m not compliant with CPAP or get less that 9 hours sleep a night > I’m quickly plunged back into the EDS nightmare…uncontrollable > falling asleep in inappropriate places! > This is a totally different feeling from fatigue – I can be utterly > fatigued and completely lacking in energy, but not be particularly > sleepy. It took me until I was on CPAP for a few months, and also > after posting here and getting some good pointers, to realize the > difference, I thought they were the same and had the same cause…not > necessarily so! > I was thinking apnea, mask leaks, mouth breathing, not sleeping long > enough was causing the continued tiredness/fatigue, but the last sleep > study showed that all this is under control with the CPAP and my sleep > hygiene is good. Sounds like you are in the same position? >>I’ll look into spontaneous arousals. >>The article you referred me to do trigger a lot of questions. I am >>also hypothyroid and I am taking DHEA. Adrenal related issues were >>never looked at prior to being prescribed thyroid replacement. Thanks >>for the info. > You’re welcome, also search for ‘adrenal fatigue’, that pulls up a lot > of interesting information. It may not be the right answer, but I > think it’s definitely worth looking into. Have they checked that the > treatment for hypothyroidism is working and getting your levels within > an acceptable range? (ah, I see later in the email you are having this > tested! good!) >>I also have thought about CFS but I don’t want to go there, mostly >>because (based on little data) it seemsto be a ‘dead end’ diagnosis – >>it’s too bad, there’s nothing we can do so live with it. > I know, that’s just how I feel about it…it’s a bit like the > Idiopathic Hypersomulence diagnosis… sort of a ‘put you in this > bucket over here because we can’t find anything wrong that we know > about but you’re still ‘ Frustrating. Although there seems to be > more research being done on CFS, and if you get a good doc there are > some treatments that seem to be successful, but it still seems to be > such a lottery as they don’t work for everyone consistently. > A lot of the rooting around on the web I’ve done so far keeps leading > me back to Adrenal Fatigue… also I keep coming across the theme of > cortisol levels, seratonin, hormone imbalance, hypoglycemia…plus > others that I don’t recall of the top of my head. >>>Unfortunately I have no answers 
Has your doc checked the usual suspects >>>in fatigue – thyroid, anemia, diabetes, EBV? I’m currently waiting for a >>>referral to a specialist in chronic fatigue syndrome, though not really sure >>>that is the answer, I also think that there could be something >>>hormonal/stress related going on – the symptoms in this link sound very >>>familiar… http://www.vrp.com/articles/563.asp so I think a referral to an >>>endocrinologist might be worthwhile before going down the CFS route. >>EBV? > Epstein Barr Virus > Try this… http://askwaltstollmd.com/archives/ebv.html > I’m having a diabetes screening done, results Friday, I had a >>thyroid level level – reults also Friday. Itake naturopathic thyroid >>repacement, I may try the more mainstream again. My iron is OK and >>always has been. Thanks for your info. > Hopefully you’ll get an answer, sometimes it’s the not knowing that’s > worse. Last week I had 4 *really* good days in a row, almost felt > like my old self, but since Sunday I’ve felt myself sliding back down > the fatigue scale again with no apparent difference in routine. At > least the brain fog hasn’t hit again yet! >>Let’s keep in touch about any new info and good luck! > I’ll post anything I find if it’s of relevance to the group (although > this post is getting close to OT already!) and email if it’s not! > Good luck to you too. > Joanne > P.S Apologies for all typo’s too! >>>"Bruce Perham" <perh…@aol.com> wrote in message >>>news:ba1c6d3c.0308142124.40bfea4f@posting.google.com… >>>>NormC <no…@socal.rr.com> wrote in message >> <news:3F39333C.9000508@socal.rr.com>… >>>>>Bruce Perham wrote: >>>>>>I’ve been doing CPAP for about 6 – 7 weeks. I’ve tried a full face >>>>>>mask >>>>>Manufacturer and model? >>>>REMaster Pro and I believe a respironics gel nasal mask. >>>>>>and nasal pillows neither of which were great. Now I’m using a >>>>>>gel nose mask which seems to be working well. The problem is that I’m >>>>>>still exhausted when I wake up. Not as bad as the occasional day I >>>>>>don’t use CPAP but not at all what I hope for. I’m thinking more >>>>>>clearly, my BP is a little lower but I don’t have any stamina >>>>>>especially if I try and exercise. The other thing is that I never had >>>>>>the symptom of daytime sleepiness. Any ideas why I’m still physically >>>>>>tired even when CPAP? By the way, I just used the titration machine >>>>>>to determine my optimum pressure and the respiratory therapist I’m >>>>>>seeing says by all his experience I’m getting efectiver CPAP for 6 – 8 >>>>>>hours per night. >>>>>Can’t help much without all of your history, diagnosis, and >>>>>treatment. >>>>>It is essential, for anyone to help, to know, as a minimum, if >>>>>you were tested in a fully equipped sleep lab, if you have a copy >>>>>of your PSG evaluation report, if it was written by an accredited >>>>>sleep doc, if you were manually titrated in a fully equipped >>>>>sleep lab before your use of a titration machine, if you have a >>>>>copy of the lab titration report, and a copy of the titration >>>>>machine report, if you did any home studies, since you’ve been on >>>>>CPAP, etc. etc. >>>>I was tested in a fully accredited sleep lab at Harborview medical >>>>Center in Seattle. I had a split night study measuring the sleep >>>>problems for half the night and then trying CPAP. I don’t have the >>>>results in front of me by the RDI was 70 with 46+ apneas and several >>>>hypopneas giving the 70 index score. The report, I believe was >>>>written by a good sleep MD, who I’m waiting to see for a follow up. I >>>>was dignosed with OSA, severe. They did a titration in the sleep lab >>>>over a period of three hours yielding a recommended presure of 8. I >>>>tried this, wasn’t feeling better, so they gave me a REMaster Auto >>>>which I was told did titration and recorded data. I used it for 8 >>>>days, still didn’t feel better. They gave me back the original >>>>machine. The 90% level for pressure during the 8 nights was 8.3 so we >>>>settled on 10. At this pressure I had few apneas or hypopneas. I had >>>>a coule nights with moderate mask leaks but the tech didn’t think it >>>>was that significant. I did have a score of 40 for leg movements. >>>>They did the special iron level, Ferrutin or Ferrulin. I had a level >>>>of 87, they said they treat for a level of 50 or lower. I use the >>>>CPAP every night and "sleep" for at least 7 hours usually more like 8
… read more »
Response:
NormC <no…@socal.rr.com> wrote in message <news:3F41253E.1030407@socal.rr.com>… > Jo wrote: > > Google disclaimer…. My home PC’s hard drive died on me over the > > weekend, it’s going to be a couple of weeks before I’m back online at > > home so this is the only option for me at the moment!! > Jo – Thanks for letting us know your reason for usng GOOGLE. Am > I correct that you did not take offense at Bear’s or my > indication of the problems with asking for help and reading from > GOOGLE?
I didn’t take offense, but then I’m a very laid back person I’m also fairly tech savvy and am already familiar with newsgroups and know what to do. I know how frustrating it can be as a regular newsgroup member to try help people that may not even see your response (I spent a couple of years on an immigration group as a regular) so a message that you’ll help but do this first, isn’t going to offend – hell, if I can become immune to trolls it’s going to take more than that! lol However, not everyone is like that and I think a lot of people that find this group are very stressed and becoming desperate in their search for answers so maybe take it as a personal criticism of their choice to use google. I think it would be very useful to include a link to instructions to setting up a news server on a home PC in the initial message. Here are some that might be helpful: http://info.connect.com.au/docs/newsconfig/ http://www.washington.edu/computing/newsgroups/configuring.html http://www.symitarusers.org/newssetup.html > It is of the utmost importance that you know, with certainty, > what your blood oxy sat levels are/were. We seem to be finding > here that a one-night stand in a sleep center is not necessarily > indicative of how you normally sleep. > The same is true with regard to the occurence of any central > apneas, endogenous or from CPAP pressure. Please clarify if your > PSG (endogenous CA) or titration report (CPAP pressure), > specifically state "No central apneas". The fact that it may > have not said anything at all is not acceptable.
It does say it, and I *did* have some central apneas on the titraion, but not on the other 2 tests…. Test 1 – PSG 85 arousals, 16 greater than 15 seconds. 37 of these were respiratory related. No central apneas and no obstructive apneas. 187 hypopneas mean duration 19.9 seconds, longest 34.5 seconds and occurred in all positions. Test 2 – Titration CPAP was titrated from 4 to 9cm of water pressure. RDI improved with progressive increases in pressure. Snoring was eliminated at 6cm of pressure The overall RDI, however, was 26.2 events per hour. This included 3 central apneas, 1 obstructive apnea and 111 hypopneas At 9cm of water, the RDI was 21.6. *interesting* I *did* have some central apneas!!! Test 3 – Re-titration & before MSLT 114 arousals, of which 101 were spontaneous and only 12 were respiratory event related. Apnea/hypopnea index decreased with progressive increases in CPAP pressures. At 11cm of water pressure, in REM sleep there were only 7 hypopneas, with an apnea/hypopnea index of 3.2. The overall apnea/hypopnea index was 3.3 events per hour This included 20 hypopneas, no central apneas and no obstructive apneas. I really should go back to my sleep doc and get more information but he scared me with the surgery statement! lol I think I would benefit from the overnight at home test even if it’s just to rule something out – like I said before, sometimes it’s the *not* knowing that is worse. > I might mention (again?) that, as a result of my own bad > experience, I often ask that someone distinguish between being > sleepy and being tired/fatigued.
Yes, it was your post that really triggered the differentiation for me and subsequent realization that there’s a difference thanks again …I think!! (….just teasing!) > Mine appeared to be reoccuring fatigue, not EDS. I couldn’t hold > my head up. Couldn’t hold my hands up to the keyboard. So I > would end up going to my recliner and watching TV. When the > phone rang, I couldn’t hold it up to my ear for more than seconds. > Both I and my neurologist (best for the mysteries of OSA) knew > that I should use an appropriate autopap and recording finger > oximeter at home for a few days. > My test showed pressure OK, but very low oxy sat levels, a sign > of central apnea. Without getting into more details, let me just > say that I feel lucky that the problem diminished with time, so > no specific action was taken.
You lucky dog Did your neurologist say what direction he would have headed in for treatment if the symptoms had not diminished? > I hope you can see that using and autopap and oximeter can be > important.
I do see it, I just need to get off my fatigued butt and take some action! Thanks Jo
Response:
Bruce – I’ve been using a FFM for a couple years. I started out with a ResMed early design. They were terrible. Their Series 2 mask is a much better design. So is the new Respironics. It is of the utmost importance that you know, with certainty, what your blood oxy sat levels are/were. We seem to be finding here that a one-night stand in a sleep center is not necessarily indicative of how you normally sleep. The same is true with regard to the occurence of any central apneas, endogenous or from CPAP pressure. Please clarify if your PSG (endogenous CA) or titration report (CPAP pressure), specifically state "No central apneas". The fact that it may have not said anything at all is not acceptable. I might mention (again?) that, as a result of my own bad experience, I often ask that someone distinguish between being sleepy and being tired/fatigued. Mine appeared to be reoccuring fatigue, not EDS. I couldn’t hold my head up. Couldn’t hold my hands up to the keyboard. So I would end up going to my recliner and watching TV. When the phone rang, I couldn’t hold it up to my ear for more than seconds. Both I and my neurologist (best for the mysteries of OSA) knew that I should use an appropriate autopap and recording finger oximeter at home for a few days. My test showed pressure OK, but very low oxy sat levels, a sign of central apnea. Without getting into more details, let me just say that I feel lucky that the problem diminished with time, so no specific action was taken. I hope you can see that using and autopap and oximeter can be important. – Hide quoted text — Show quoted text -Bruce Perham wrote: > NormC <no…@socal.rr.com> wrote in message <news:3F3C92C2.4040701@socal.rr.com>… >>Bruce Perham wrote: >>>NormC <no…@socal.rr.com> wrote in message <news:3F39333C.9000508@socal.rr.com>… >>>>Bruce Perham wrote: >>>>>I’ve been doing CPAP for about 6 – 7 weeks. I’ve tried a full face >>>>>mask >>>>Manufacturer and model? >>>REMaster Pro and I believe a respironics gel nasal mask. >>>>>and nasal pillows neither of which were great. Now I’m using a >>>>>gel nose mask which seems to be working well. The problem is that I’m >>>>>still exhausted when I wake up. Not as bad as the occasional day I >>>>>don’t use CPAP but not at all what I hope for. I’m thinking more >>>>>clearly, my BP is a little lower but I don’t have any stamina >>>>>especially if I try and exercise. The other thing is that I never had >>>>>the symptom of daytime sleepiness. Any ideas why I’m still physically >>>>>tired even when CPAP? By the way, I just used the titration machine >>>>>to determine my optimum pressure and the respiratory therapist I’m >>>>>seeing says by all his experience I’m getting efectiver CPAP for 6 – 8 >>>>>hours per night. >>>>Can’t help much without all of your history, diagnosis, and >>>>treatment. >>>>It is essential, for anyone to help, to know, as a minimum, if >>>>you were tested in a fully equipped sleep lab, if you have a copy >>>>of your PSG evaluation report, if it was written by an accredited >>>>sleep doc, if you were manually titrated in a fully equipped >>>>sleep lab before your use of a titration machine, if you have a >>>>copy of the lab titration report, and a copy of the titration >>>>machine report, if you did any home studies, since you’ve been on >>>>CPAP, etc. etc. >>>I was tested in a fully accredited sleep lab at Harborview medical >>>Center in Seattle. >>Good. >>>I had a split night study measuring the sleep >>>problems for half the night and then trying CPAP. I don’t have the >>>results in front of me by the RDI was 70 with 46+ apneas and several >>>hypopneas giving the 70 index score. The report, I believe was >>>written by a good sleep MD, >>Is he listed here: http://www.absm.org/Diplomates/listing.htm > Yes, Nate Watson – certofied in April, 2003. >>>who I’m waiting to see for a follow up. I >>>was dignosed with OSA, severe. They did a titration in the sleep lab >>>over a period of three hours yielding a recommended presure of 8. >>What happened with your blood oxygen saturation levels? They >>should have been measured during your sleep test and titration. > My oxygen saturation levels were never below 96, if I remember > correctly. >>How were central apneas reported, if at all? > No central apneas reported. >>>I >>>tried this, wasn’t feeling better, so they gave me a REMaster Auto >>>which I was told did titration and recorded data. I used it for 8 >>>days, still didn’t feel better. >>Didn’t they also give you a recording finger oximeter to use for >>a couple nights, along with the autopap. This would have >>provided an indication of your blood oxygen saturation and the >>occurence of central apneas (pressure OK, oxy sat levels down). >>I used an autopap for a week, with a finger oximeter for two >>nights, to try and determine why I was continuing to feel lousy. >> I felt worse with the autopap also. That seems to be the case >>with people who are experiencing central apnea(s). > I didn’t get a finger oximeter with the autopap. >>>They gave me back the original >>>machine. The 90% level for pressure during the 8 nights was 8.3 so we >>>settled on 10. At this pressure I had few apneas or hypopneas. I had >>>a coule nights with moderate mask leaks but the tech didn’t think it >>>was that significant. I did have a score of 40 for leg movements. >>Don’t know anything about this. >>>They did the special iron level, Ferrutin or Ferrulin. I had a level >>>of 87, they said they treat for a level of 50 or lower. >>Don’t know anything about this. >>>I use the >>>CPAP every night and "sleep" for at least 7 hours usually more like 8 >>>or 8 1/2. I still wake up tired with no stamina and muscular >>>weakness. >>So you aren’t getting quality sleep. You’re just laying in bed >>with your eyes closed, in a semiconscious state, which most of us >>called ’sleep’, before we were diagnosed with OSA. > I wake up and I think I’ve slept soundly, I don’t remember waking up > often, being disturbed by noise etc., I just feel lousy. >>< Again the odd thing is that I don’t have daytime >>>sleepiness. >>Does this mean you have no need to take a nap at some time during >>the day? But you may have difficulty walking a few blocks or up >>a few steps? > I take naps because I’m tired but I don’t fall asleep driving or in > front of the TV or things like that. I walk for up to 1 – 1 1/2 hours > with my daughter in the baby backpack, sometimes twice a day. I don’t > have stamina in my muscles, I hold my daughter for a while – 20 > minutes and my arms are fatigued. >>>I tolerate the CPAP well. I don’t need to use the ramp to go to >>>sleep, I read and wait a few minutes until I’m sleepy, put on the chin >>>strap and then the mask and crank up the machine. >>That’s good. However, if you’re using a chinstrap to keep your >>lips from parting while asleep, the chinstrap may not be working >>well. > I hve the chinstrap on pretty tightly, my respiratory tech said no > tighter. I tried a full face and it didn’t work very well. Maybe I > need to try other full face masks. >>Only a full face mask guarantees continued CPAP treatment when >>ones lips part while asleep. >>>That’s the info I have in my head. Any ideas? I have an appt >>>scheduled with the sleep MD in Sept and with an ENT who specializes in >>>sleep disorders >>In the highest poopulated state in the US, California, there are >>no ENTs who have been diplomated as sleep doctors. As a result I >>have my doubts about the ENT you will be seeing. > He is a surgeon and I will get a second opinion. > My two bigest questions now are: > 1) What data can the slepp doc show me to document that the CPAP is > working as he says it is? > 2) Can I expect, if CPAP is effective, that my physical fatigue will > be less or go away? >>>to rule out other causes or anything that might >>>interfere with CPAP. >>Be sure you get an endoscopy of your airways. Don’t go to an ENT >>who doesn’t have the equipment to do this. And remember that the >>ENT is probably a surgeon. Get a second opinion about any >>surgery from a diplomated sleep doc who doesn’t do surgery, which >>most of them don’t. >>>This is also in Sept. >>>>>Bruce
Response:
Google disclaimer…. My home PC’s hard drive died on me over the weekend, it’s going to be a couple of weeks before I’m back online at home so this is the only option for me at the moment!! Comments in & amongst…. perh…@aol.com (Bruce Perham) wrote in message <news:ba1c6d3c.0308170739.3ec889ac@posting.google.com>… > "Jo" <jo…@yahoo.com> wrote in message <news:vjqnmpr0t3237b@corp.supernews.com>… > > Hi Bruce, I have a similar problem…. I am still constantly fatigued which > > I thought was going to be relieved by using CPAP!! I did (and still do) > > have EDS, but that’s improving with time because the CPAP is treating my > > apneas & hypopneas, my RDI on the last sleep study with CPAP was 3 (reduced > > from 33 with a pressure of 13) I can stay awake for a whole day now I > > did, however, have a lot of spontaneous arousals…did your sleep study show > > anything similar? those surely can’t be helping the body rest & repair > > itself. > EDS – this doesn’t ring a bell??
Excessive daytime sleepiness. Although I note you said in your original post that you weren’t sleepy during the day before they sent you for a sleep study. If I’m not compliant with CPAP or get less that 9 hours sleep a night I’m quickly plunged back into the EDS nightmare…uncontrollable falling asleep in inappropriate places! This is a totally different feeling from fatigue – I can be utterly fatigued and completely lacking in energy, but not be particularly sleepy. It took me until I was on CPAP for a few months, and also after posting here and getting some good pointers, to realize the difference, I thought they were the same and had the same cause…not necessarily so! I was thinking apnea, mask leaks, mouth breathing, not sleeping long enough was causing the continued tiredness/fatigue, but the last sleep study showed that all this is under control with the CPAP and my sleep hygiene is good. Sounds like you are in the same position? > I’ll look into spontaneous arousals. > The article you referred me to do trigger a lot of questions. I am > also hypothyroid and I am taking DHEA. Adrenal related issues were > never looked at prior to being prescribed thyroid replacement. Thanks > for the info.
You’re welcome, also search for ‘adrenal fatigue’, that pulls up a lot of interesting information. It may not be the right answer, but I think it’s definitely worth looking into. Have they checked that the treatment for hypothyroidism is working and getting your levels within an acceptable range? (ah, I see later in the email you are having this tested! good!) > I also have thought about CFS but I don’t want to go there, mostly > because (based on little data) it seemsto be a ‘dead end’ diagnosis – > it’s too bad, there’s nothing we can do so live with it.
I know, that’s just how I feel about it…it’s a bit like the Idiopathic Hypersomulence diagnosis… sort of a ‘put you in this bucket over here because we can’t find anything wrong that we know about but you’re still ‘ Frustrating. Although there seems to be more research being done on CFS, and if you get a good doc there are some treatments that seem to be successful, but it still seems to be such a lottery as they don’t work for everyone consistently. A lot of the rooting around on the web I’ve done so far keeps leading me back to Adrenal Fatigue… also I keep coming across the theme of cortisol levels, seratonin, hormone imbalance, hypoglycemia…plus others that I don’t recall of the top of my head. > > Unfortunately I have no answers Has your doc checked the usual suspects > > in fatigue – thyroid, anemia, diabetes, EBV? I’m currently waiting for a > > referral to a specialist in chronic fatigue syndrome, though not really sure > > that is the answer, I also think that there could be something > > hormonal/stress related going on – the symptoms in this link sound very > > familiar… http://www.vrp.com/articles/563.asp so I think a referral to an > > endocrinologist might be worthwhile before going down the CFS route. > EBV?
Epstein Barr Virus Try this… http://askwaltstollmd.com/archives/ebv.html I’m having a diabetes screening done, results Friday, I had a > thyroid level level – reults also Friday. Itake naturopathic thyroid > repacement, I may try the more mainstream again. My iron is OK and > always has been. Thanks for your info.
Hopefully you’ll get an answer, sometimes it’s the not knowing that’s worse. Last week I had 4 *really* good days in a row, almost felt like my old self, but since Sunday I’ve felt myself sliding back down the fatigue scale again with no apparent difference in routine. At least the brain fog hasn’t hit again yet! > Let’s keep in touch about any new info and good luck!
I’ll post anything I find if it’s of relevance to the group (although this post is getting close to OT already!) and email if it’s not! Good luck to you too. Joanne P.S Apologies for all typo’s too! – Hide quoted text — Show quoted text -> > "Bruce Perham" <perh…@aol.com> wrote in message > > news:ba1c6d3c.0308142124.40bfea4f@posting.google.com… > > > NormC <no…@socal.rr.com> wrote in message > <news:3F39333C.9000508@socal.rr.com>… > > > > Bruce Perham wrote: > > > > > I’ve been doing CPAP for about 6 – 7 weeks. I’ve tried a full face > > > > > mask > > > > Manufacturer and model? > > > REMaster Pro and I believe a respironics gel nasal mask. > > > > > and nasal pillows neither of which were great. Now I’m using a > > > > > gel nose mask which seems to be working well. The problem is that I’m > > > > > still exhausted when I wake up. Not as bad as the occasional day I > > > > > don’t use CPAP but not at all what I hope for. I’m thinking more > > > > > clearly, my BP is a little lower but I don’t have any stamina > > > > > especially if I try and exercise. The other thing is that I never had > > > > > the symptom of daytime sleepiness. Any ideas why I’m still physically > > > > > tired even when CPAP? By the way, I just used the titration machine > > > > > to determine my optimum pressure and the respiratory therapist I’m > > > > > seeing says by all his experience I’m getting efectiver CPAP for 6 – 8 > > > > > hours per night. > > > > Can’t help much without all of your history, diagnosis, and > > > > treatment. > > > > It is essential, for anyone to help, to know, as a minimum, if > > > > you were tested in a fully equipped sleep lab, if you have a copy > > > > of your PSG evaluation report, if it was written by an accredited > > > > sleep doc, if you were manually titrated in a fully equipped > > > > sleep lab before your use of a titration machine, if you have a > > > > copy of the lab titration report, and a copy of the titration > > > > machine report, if you did any home studies, since you’ve been on > > > > CPAP, etc. etc. > > > I was tested in a fully accredited sleep lab at Harborview medical > > > Center in Seattle. I had a split night study measuring the sleep > > > problems for half the night and then trying CPAP. I don’t have the > > > results in front of me by the RDI was 70 with 46+ apneas and several > > > hypopneas giving the 70 index score. The report, I believe was > > > written by a good sleep MD, who I’m waiting to see for a follow up. I > > > was dignosed with OSA, severe. They did a titration in the sleep lab > > > over a period of three hours yielding a recommended presure of 8. I > > > tried this, wasn’t feeling better, so they gave me a REMaster Auto > > > which I was told did titration and recorded data. I used it for 8 > > > days, still didn’t feel better. They gave me back the original > > > machine. The 90% level for pressure during the 8 nights was 8.3 so we > > > settled on 10. At this pressure I had few apneas or hypopneas. I had > > > a coule nights with moderate mask leaks but the tech didn’t think it > > > was that significant. I did have a score of 40 for leg movements. > > > They did the special iron level, Ferrutin or Ferrulin. I had a level > > > of 87, they said they treat for a level of 50 or lower. I use the > > > CPAP every night and "sleep" for at least 7 hours usually more like 8 > > > or 8 1/2. I still wake up tired with no stamina and muscular > > > weakness. Again the odd thing is that I don’t have daytime > > > sleepiness. > > > I tolerate the CPAP well. I don’t need to use the ramp to go to > > > sleep, I read and wait a few minutes until I’m sleepy, put on the chin > > > strap and then the mask and crank up the machine. > > > That’s the info I have in my head. Any ideas? I have an appt > > > scheduled with the sleep MD in Sept and with an ENT who specializes in > > > sleep disorders to rule out other causes or anything that might > > > interfere with CPAP. This is also in Sept. > > > > > Bruce
Response:
"Jo" <jo…@yahoo.com> wrote in message <news:vjqnmpr0t3237b@corp.supernews.com>… > Hi Bruce, I have a similar problem…. I am still constantly fatigued which > I thought was going to be relieved by using CPAP!! I did (and still do) > have EDS, but that’s improving with time because the CPAP is treating my > apneas & hypopneas, my RDI on the last sleep study with CPAP was 3 (reduced > from 33 with a pressure of 13) I can stay awake for a whole day now I > did, however, have a lot of spontaneous arousals…did your sleep study show > anything similar? those surely can’t be helping the body rest & repair > itself.
EDS – this doesn’t ring a bell?? I’ll look into spontaneous arousals. The article you referred me to do trigger a lot of questions. I am also hypothyroid and I am taking DHEA. Adrenal related issues were never looked at prior to being prescribed thyroid replacement. Thanks for the info. I also have thought about CFS but I don’t want to go there, mostly because (based on little data) it seemsto be a ‘dead end’ diagnosis – it’s too bad, there’s nothing we can do so live with it. > Interestingly this experience has taught me how to differentiate between > fatigue and sleepiness and it appears the two can be completely unrelated! > I’m currently keeping a symptom log and haven’t yet found a link between > perceived quality of sleep and level of fatigue the next day. > Unfortunately I have no answers Has your doc checked the usual suspects > in fatigue – thyroid, anemia, diabetes, EBV? I’m currently waiting for a > referral to a specialist in chronic fatigue syndrome, though not really sure > that is the answer, I also think that there could be something > hormonal/stress related going on – the symptoms in this link sound very > familiar… http://www.vrp.com/articles/563.asp so I think a referral to an > endocrinologist might be worthwhile before going down the CFS route.
EBV? I’m having a diabetes screening done, results Friday, I had a thyroid level level – reults also Friday. Itake naturopathic thyroid repacement, I may try the more mainstream again. My iron is OK and always has been. Thanks for your info. Let’s keep in touch about any new info and good luck! – Hide quoted text — Show quoted text -> Joanne > "Bruce Perham" <perh…@aol.com> wrote in message > news:ba1c6d3c.0308142124.40bfea4f@posting.google.com… > > NormC <no…@socal.rr.com> wrote in message > <news:3F39333C.9000508@socal.rr.com>… > > > Bruce Perham wrote: > > > > I’ve been doing CPAP for about 6 – 7 weeks. I’ve tried a full face > > > > mask > > > Manufacturer and model? > > REMaster Pro and I believe a respironics gel nasal mask. > > > > and nasal pillows neither of which were great. Now I’m using a > > > > gel nose mask which seems to be working well. The problem is that I’m > > > > still exhausted when I wake up. Not as bad as the occasional day I > > > > don’t use CPAP but not at all what I hope for. I’m thinking more > > > > clearly, my BP is a little lower but I don’t have any stamina > > > > especially if I try and exercise. The other thing is that I never had > > > > the symptom of daytime sleepiness. Any ideas why I’m still physically > > > > tired even when CPAP? By the way, I just used the titration machine > > > > to determine my optimum pressure and the respiratory therapist I’m > > > > seeing says by all his experience I’m getting efectiver CPAP for 6 – 8 > > > > hours per night. > > > Can’t help much without all of your history, diagnosis, and > > > treatment. > > > It is essential, for anyone to help, to know, as a minimum, if > > > you were tested in a fully equipped sleep lab, if you have a copy > > > of your PSG evaluation report, if it was written by an accredited > > > sleep doc, if you were manually titrated in a fully equipped > > > sleep lab before your use of a titration machine, if you have a > > > copy of the lab titration report, and a copy of the titration > > > machine report, if you did any home studies, since you’ve been on > > > CPAP, etc. etc. > > I was tested in a fully accredited sleep lab at Harborview medical > > Center in Seattle. I had a split night study measuring the sleep > > problems for half the night and then trying CPAP. I don’t have the > > results in front of me by the RDI was 70 with 46+ apneas and several > > hypopneas giving the 70 index score. The report, I believe was > > written by a good sleep MD, who I’m waiting to see for a follow up. I > > was dignosed with OSA, severe. They did a titration in the sleep lab > > over a period of three hours yielding a recommended presure of 8. I > > tried this, wasn’t feeling better, so they gave me a REMaster Auto > > which I was told did titration and recorded data. I used it for 8 > > days, still didn’t feel better. They gave me back the original > > machine. The 90% level for pressure during the 8 nights was 8.3 so we > > settled on 10. At this pressure I had few apneas or hypopneas. I had > > a coule nights with moderate mask leaks but the tech didn’t think it > > was that significant. I did have a score of 40 for leg movements. > > They did the special iron level, Ferrutin or Ferrulin. I had a level > > of 87, they said they treat for a level of 50 or lower. I use the > > CPAP every night and "sleep" for at least 7 hours usually more like 8 > > or 8 1/2. I still wake up tired with no stamina and muscular > > weakness. Again the odd thing is that I don’t have daytime > > sleepiness. > > I tolerate the CPAP well. I don’t need to use the ramp to go to > > sleep, I read and wait a few minutes until I’m sleepy, put on the chin > > strap and then the mask and crank up the machine. > > That’s the info I have in my head. Any ideas? I have an appt > > scheduled with the sleep MD in Sept and with an ENT who specializes in > > sleep disorders to rule out other causes or anything that might > > interfere with CPAP. This is also in Sept. > > > > Bruce
Response:
- Hide quoted text — Show quoted text -NormC <no…@socal.rr.com> wrote in message <news:3F3C92C2.4040701@socal.rr.com>… > Bruce Perham wrote: > > NormC <no…@socal.rr.com> wrote in message <news:3F39333C.9000508@socal.rr.com>… > >>Bruce Perham wrote: > >>>I’ve been doing CPAP for about 6 – 7 weeks. I’ve tried a full face > >>>mask > >>Manufacturer and model? > > REMaster Pro and I believe a respironics gel nasal mask. > >>>and nasal pillows neither of which were great. Now I’m using a > >>>gel nose mask which seems to be working well. The problem is that I’m > >>>still exhausted when I wake up. Not as bad as the occasional day I > >>>don’t use CPAP but not at all what I hope for. I’m thinking more > >>>clearly, my BP is a little lower but I don’t have any stamina > >>>especially if I try and exercise. The other thing is that I never had > >>>the symptom of daytime sleepiness. Any ideas why I’m still physically > >>>tired even when CPAP? By the way, I just used the titration machine > >>>to determine my optimum pressure and the respiratory therapist I’m > >>>seeing says by all his experience I’m getting efectiver CPAP for 6 – 8 > >>>hours per night. > >>Can’t help much without all of your history, diagnosis, and > >>treatment. > >>It is essential, for anyone to help, to know, as a minimum, if > >>you were tested in a fully equipped sleep lab, if you have a copy > >>of your PSG evaluation report, if it was written by an accredited > >>sleep doc, if you were manually titrated in a fully equipped > >>sleep lab before your use of a titration machine, if you have a > >>copy of the lab titration report, and a copy of the titration > >>machine report, if you did any home studies, since you’ve been on > >>CPAP, etc. etc. > > I was tested in a fully accredited sleep lab at Harborview medical > > Center in Seattle. > Good. > > I had a split night study measuring the sleep > > problems for half the night and then trying CPAP. I don’t have the > > results in front of me by the RDI was 70 with 46+ apneas and several > > hypopneas giving the 70 index score. The report, I believe was > > written by a good sleep MD, > Is he listed here: http://www.absm.org/Diplomates/listing.htm
Yes, Nate Watson – certofied in April, 2003. > > who I’m waiting to see for a follow up. I > > was dignosed with OSA, severe. They did a titration in the sleep lab > > over a period of three hours yielding a recommended presure of 8. > What happened with your blood oxygen saturation levels? They > should have been measured during your sleep test and titration.
My oxygen saturation levels were never below 96, if I remember correctly. > How were central apneas reported, if at all?
No central apneas reported. > > I > > tried this, wasn’t feeling better, so they gave me a REMaster Auto > > which I was told did titration and recorded data. I used it for 8 > > days, still didn’t feel better. > Didn’t they also give you a recording finger oximeter to use for > a couple nights, along with the autopap. This would have > provided an indication of your blood oxygen saturation and the > occurence of central apneas (pressure OK, oxy sat levels down). > I used an autopap for a week, with a finger oximeter for two > nights, to try and determine why I was continuing to feel lousy. > I felt worse with the autopap also. That seems to be the case > with people who are experiencing central apnea(s).
I didn’t get a finger oximeter with the autopap. – Hide quoted text — Show quoted text -> > They gave me back the original > > machine. The 90% level for pressure during the 8 nights was 8.3 so we > > settled on 10. At this pressure I had few apneas or hypopneas. I had > > a coule nights with moderate mask leaks but the tech didn’t think it > > was that significant. I did have a score of 40 for leg movements. > Don’t know anything about this. > > They did the special iron level, Ferrutin or Ferrulin. I had a level > > of 87, they said they treat for a level of 50 or lower. > Don’t know anything about this. > > I use the > > CPAP every night and "sleep" for at least 7 hours usually more like 8 > > or 8 1/2. I still wake up tired with no stamina and muscular > > weakness. > So you aren’t getting quality sleep. You’re just laying in bed > with your eyes closed, in a semiconscious state, which most of us > called ’sleep’, before we were diagnosed with OSA.
I wake up and I think I’ve slept soundly, I don’t remember waking up often, being disturbed by noise etc., I just feel lousy. > < Again the odd thing is that I don’t have daytime > > sleepiness. > Does this mean you have no need to take a nap at some time during > the day? But you may have difficulty walking a few blocks or up > a few steps?
I take naps because I’m tired but I don’t fall asleep driving or in front of the TV or things like that. I walk for up to 1 – 1 1/2 hours with my daughter in the baby backpack, sometimes twice a day. I don’t have stamina in my muscles, I hold my daughter for a while – 20 minutes and my arms are fatigued. > > I tolerate the CPAP well. I don’t need to use the ramp to go to > > sleep, I read and wait a few minutes until I’m sleepy, put on the chin > > strap and then the mask and crank up the machine. > That’s good. However, if you’re using a chinstrap to keep your > lips from parting while asleep, the chinstrap may not be working > well.
I hve the chinstrap on pretty tightly, my respiratory tech said no tighter. I tried a full face and it didn’t work very well. Maybe I need to try other full face masks. > Only a full face mask guarantees continued CPAP treatment when > ones lips part while asleep. > > That’s the info I have in my head. Any ideas? I have an appt > > scheduled with the sleep MD in Sept and with an ENT who specializes in > > sleep disorders > In the highest poopulated state in the US, California, there are > no ENTs who have been diplomated as sleep doctors. As a result I > have my doubts about the ENT you will be seeing.
He is a surgeon and I will get a second opinion. My two bigest questions now are: 1) What data can the slepp doc show me to document that the CPAP is working as he says it is? 2) Can I expect, if CPAP is effective, that my physical fatigue will be less or go away? – Hide quoted text — Show quoted text -> > to rule out other causes or anything that might > > interfere with CPAP. > Be sure you get an endoscopy of your airways. Don’t go to an ENT > who doesn’t have the equipment to do this. And remember that the > ENT is probably a surgeon. Get a second opinion about any > surgery from a diplomated sleep doc who doesn’t do surgery, which > most of them don’t. > > This is also in Sept. > >>>Bruce
Response:
Evidently you are certain you don’t have central apnea or central apneas resulting from the CPAP pressure. Correct? – Hide quoted text — Show quoted text -Jo wrote: > Hi Bruce, I have a similar problem…. I am still constantly fatigued which > I thought was going to be relieved by using CPAP!! I did (and still do) > have EDS, but that’s improving with time because the CPAP is treating my > apneas & hypopneas, my RDI on the last sleep study with CPAP was 3 (reduced > from 33 with a pressure of 13) I can stay awake for a whole day now I > did, however, have a lot of spontaneous arousals…did your sleep study show > anything similar? those surely can’t be helping the body rest & repair > itself. > Interestingly this experience has taught me how to differentiate between > fatigue and sleepiness and it appears the two can be completely unrelated! > I’m currently keeping a symptom log and haven’t yet found a link between > perceived quality of sleep and level of fatigue the next day. > Unfortunately I have no answers Has your doc checked the usual suspects > in fatigue – thyroid, anemia, diabetes, EBV? I’m currently waiting for a > referral to a specialist in chronic fatigue syndrome, though not really sure > that is the answer, I also think that there could be something > hormonal/stress related going on – the symptoms in this link sound very > familiar… http://www.vrp.com/articles/563.asp so I think a referral to an > endocrinologist might be worthwhile before going down the CFS route. > Joanne > "Bruce Perham" <perh…@aol.com> wrote in message > news:ba1c6d3c.0308142124.40bfea4f@posting.google.com… >>NormC <no…@socal.rr.com> wrote in message > <news:3F39333C.9000508@socal.rr.com>… >>>Bruce Perham wrote: >>>>I’ve been doing CPAP for about 6 – 7 weeks. I’ve tried a full face >>>>mask >>>Manufacturer and model? >>REMaster Pro and I believe a respironics gel nasal mask. >>>>and nasal pillows neither of which were great. Now I’m using a >>>>gel nose mask which seems to be working well. The problem is that I’m >>>>still exhausted when I wake up. Not as bad as the occasional day I >>>>don’t use CPAP but not at all what I hope for. I’m thinking more >>>>clearly, my BP is a little lower but I don’t have any stamina >>>>especially if I try and exercise. The other thing is that I never had >>>>the symptom of daytime sleepiness. Any ideas why I’m still physically >>>>tired even when CPAP? By the way, I just used the titration machine >>>>to determine my optimum pressure and the respiratory therapist I’m >>>>seeing says by all his experience I’m getting efectiver CPAP for 6 – 8 >>>>hours per night. >>>Can’t help much without all of your history, diagnosis, and >>>treatment. >>>It is essential, for anyone to help, to know, as a minimum, if >>>you were tested in a fully equipped sleep lab, if you have a copy >>>of your PSG evaluation report, if it was written by an accredited >>>sleep doc, if you were manually titrated in a fully equipped >>>sleep lab before your use of a titration machine, if you have a >>>copy of the lab titration report, and a copy of the titration >>>machine report, if you did any home studies, since you’ve been on >>>CPAP, etc. etc. >>I was tested in a fully accredited sleep lab at Harborview medical >>Center in Seattle. I had a split night study measuring the sleep >>problems for half the night and then trying CPAP. I don’t have the >>results in front of me by the RDI was 70 with 46+ apneas and several >>hypopneas giving the 70 index score. The report, I believe was >>written by a good sleep MD, who I’m waiting to see for a follow up. I >>was dignosed with OSA, severe. They did a titration in the sleep lab >>over a period of three hours yielding a recommended presure of 8. I >>tried this, wasn’t feeling better, so they gave me a REMaster Auto >>which I was told did titration and recorded data. I used it for 8 >>days, still didn’t feel better. They gave me back the original >>machine. The 90% level for pressure during the 8 nights was 8.3 so we >>settled on 10. At this pressure I had few apneas or hypopneas. I had >>a coule nights with moderate mask leaks but the tech didn’t think it >>was that significant. I did have a score of 40 for leg movements. >>They did the special iron level, Ferrutin or Ferrulin. I had a level >>of 87, they said they treat for a level of 50 or lower. I use the >>CPAP every night and "sleep" for at least 7 hours usually more like 8 >>or 8 1/2. I still wake up tired with no stamina and muscular >>weakness. Again the odd thing is that I don’t have daytime >>sleepiness. >>I tolerate the CPAP well. I don’t need to use the ramp to go to >>sleep, I read and wait a few minutes until I’m sleepy, put on the chin >>strap and then the mask and crank up the machine. >>That’s the info I have in my head. Any ideas? I have an appt >>scheduled with the sleep MD in Sept and with an ENT who specializes in >>sleep disorders to rule out other causes or anything that might >>interfere with CPAP. This is also in Sept. >>>>Bruce
Response:
No central apneas at all on the last sleep study and the fatigue feeling is definitely a different feeling from the uncontrollable falling asleep feeling prior to CPAP. The more the EDS recedes the easier it is to tell the difference. I think CPAP is effective and successful, but I suspect there’s something else going on that is making me fatigued. Having said that, I still haven’t investigated trying a finger oximeter (sp??) at home… "NormC" <no…@socal.rr.com> wrote in message
news:3F3D62DC.3000802@socal.rr.com… – Hide quoted text — Show quoted text -> Evidently you are certain you don’t have central apnea or central > apneas resulting from the CPAP pressure. Correct? > Jo wrote: > > Hi Bruce, I have a similar problem…. I am still constantly fatigued which > > I thought was going to be relieved by using CPAP!! I did (and still do) > > have EDS, but that’s improving with time because the CPAP is treating my > > apneas & hypopneas, my RDI on the last sleep study with CPAP was 3 (reduced > > from 33 with a pressure of 13) I can stay awake for a whole day now I > > did, however, have a lot of spontaneous arousals…did your sleep study show > > anything similar? those surely can’t be helping the body rest & repair > > itself. > > Interestingly this experience has taught me how to differentiate between > > fatigue and sleepiness and it appears the two can be completely unrelated! > > I’m currently keeping a symptom log and haven’t yet found a link between > > perceived quality of sleep and level of fatigue the next day. > > Unfortunately I have no answers Has your doc checked the usual suspects > > in fatigue – thyroid, anemia, diabetes, EBV? I’m currently waiting for a > > referral to a specialist in chronic fatigue syndrome, though not really sure > > that is the answer, I also think that there could be something > > hormonal/stress related going on – the symptoms in this link sound very > > familiar… http://www.vrp.com/articles/563.asp so I think a referral to an > > endocrinologist might be worthwhile before going down the CFS route. > > Joanne > > "Bruce Perham" <perh…@aol.com> wrote in message > > news:ba1c6d3c.0308142124.40bfea4f@posting.google.com… > >>NormC <no…@socal.rr.com> wrote in message > > <news:3F39333C.9000508@socal.rr.com>… > >>>Bruce Perham wrote: > >>>>I’ve been doing CPAP for about 6 – 7 weeks. I’ve tried a full face > >>>>mask > >>>Manufacturer and model? > >>REMaster Pro and I believe a respironics gel nasal mask. > >>>>and nasal pillows neither of which were great. Now I’m using a > >>>>gel nose mask which seems to be working well. The problem is that I’m > >>>>still exhausted when I wake up. Not as bad as the occasional day I > >>>>don’t use CPAP but not at all what I hope for. I’m thinking more > >>>>clearly, my BP is a little lower but I don’t have any stamina > >>>>especially if I try and exercise. The other thing is that I never had > >>>>the symptom of daytime sleepiness. Any ideas why I’m still physically > >>>>tired even when CPAP? By the way, I just used the titration machine > >>>>to determine my optimum pressure and the respiratory therapist I’m > >>>>seeing says by all his experience I’m getting efectiver CPAP for 6 – 8 > >>>>hours per night. > >>>Can’t help much without all of your history, diagnosis, and > >>>treatment. > >>>It is essential, for anyone to help, to know, as a minimum, if > >>>you were tested in a fully equipped sleep lab, if you have a copy > >>>of your PSG evaluation report, if it was written by an accredited > >>>sleep doc, if you were manually titrated in a fully equipped > >>>sleep lab before your use of a titration machine, if you have a > >>>copy of the lab titration report, and a copy of the titration > >>>machine report, if you did any home studies, since you’ve been on > >>>CPAP, etc. etc. > >>I was tested in a fully accredited sleep lab at Harborview medical > >>Center in Seattle. I had a split night study measuring the sleep > >>problems for half the night and then trying CPAP. I don’t have the > >>results in front of me by the RDI was 70 with 46+ apneas and several > >>hypopneas giving the 70 index score. The report, I believe was > >>written by a good sleep MD, who I’m waiting to see for a follow up. I > >>was dignosed with OSA, severe. They did a titration in the sleep lab > >>over a period of three hours yielding a recommended presure of 8. I > >>tried this, wasn’t feeling better, so they gave me a REMaster Auto > >>which I was told did titration and recorded data. I used it for 8 > >>days, still didn’t feel better. They gave me back the original > >>machine. The 90% level for pressure during the 8 nights was 8.3 so we > >>settled on 10. At this pressure I had few apneas or hypopneas. I had > >>a coule nights with moderate mask leaks but the tech didn’t think it > >>was that significant. I did have a score of 40 for leg movements. > >>They did the special iron level, Ferrutin or Ferrulin. I had a level > >>of 87, they said they treat for a level of 50 or lower. I use the > >>CPAP every night and "sleep" for at least 7 hours usually more like 8 > >>or 8 1/2. I still wake up tired with no stamina and muscular > >>weakness. Again the odd thing is that I don’t have daytime > >>sleepiness. > >>I tolerate the CPAP well. I don’t need to use the ramp to go to > >>sleep, I read and wait a few minutes until I’m sleepy, put on the chin > >>strap and then the mask and crank up the machine. > >>That’s the info I have in my head. Any ideas? I have an appt > >>scheduled with the sleep MD in Sept and with an ENT who specializes in > >>sleep disorders to rule out other causes or anything that might > >>interfere with CPAP. This is also in Sept. > >>>>Bruce
Response:
Hi Bruce, I have a similar problem…. I am still constantly fatigued which I thought was going to be relieved by using CPAP!! I did (and still do) have EDS, but that’s improving with time because the CPAP is treating my apneas & hypopneas, my RDI on the last sleep study with CPAP was 3 (reduced from 33 with a pressure of 13) I can stay awake for a whole day now I did, however, have a lot of spontaneous arousals…did your sleep study show anything similar? those surely can’t be helping the body rest & repair itself. Interestingly this experience has taught me how to differentiate between fatigue and sleepiness and it appears the two can be completely unrelated! I’m currently keeping a symptom log and haven’t yet found a link between perceived quality of sleep and level of fatigue the next day. Unfortunately I have no answers Has your doc checked the usual suspects in fatigue – thyroid, anemia, diabetes, EBV? I’m currently waiting for a referral to a specialist in chronic fatigue syndrome, though not really sure that is the answer, I also think that there could be something hormonal/stress related going on – the symptoms in this link sound very familiar… http://www.vrp.com/articles/563.asp so I think a referral to an endocrinologist might be worthwhile before going down the CFS route. Joanne "Bruce Perham" <perh…@aol.com> wrote in message
news:ba1c6d3c.0308142124.40bfea4f@posting.google.com… > NormC <no…@socal.rr.com> wrote in message
<news:3F39333C.9000508@socal.rr.com>… – Hide quoted text — Show quoted text -> > Bruce Perham wrote: > > > I’ve been doing CPAP for about 6 – 7 weeks. I’ve tried a full face > > > mask > > Manufacturer and model? > REMaster Pro and I believe a respironics gel nasal mask. > > > and nasal pillows neither of which were great. Now I’m using a > > > gel nose mask which seems to be working well. The problem is that I’m > > > still exhausted when I wake up. Not as bad as the occasional day I > > > don’t use CPAP but not at all what I hope for. I’m thinking more > > > clearly, my BP is a little lower but I don’t have any stamina > > > especially if I try and exercise. The other thing is that I never had > > > the symptom of daytime sleepiness. Any ideas why I’m still physically > > > tired even when CPAP? By the way, I just used the titration machine > > > to determine my optimum pressure and the respiratory therapist I’m > > > seeing says by all his experience I’m getting efectiver CPAP for 6 – 8 > > > hours per night. > > Can’t help much without all of your history, diagnosis, and > > treatment. > > It is essential, for anyone to help, to know, as a minimum, if > > you were tested in a fully equipped sleep lab, if you have a copy > > of your PSG evaluation report, if it was written by an accredited > > sleep doc, if you were manually titrated in a fully equipped > > sleep lab before your use of a titration machine, if you have a > > copy of the lab titration report, and a copy of the titration > > machine report, if you did any home studies, since you’ve been on > > CPAP, etc. etc. > I was tested in a fully accredited sleep lab at Harborview medical > Center in Seattle. I had a split night study measuring the sleep > problems for half the night and then trying CPAP. I don’t have the > results in front of me by the RDI was 70 with 46+ apneas and several > hypopneas giving the 70 index score. The report, I believe was > written by a good sleep MD, who I’m waiting to see for a follow up. I > was dignosed with OSA, severe. They did a titration in the sleep lab > over a period of three hours yielding a recommended presure of 8. I > tried this, wasn’t feeling better, so they gave me a REMaster Auto > which I was told did titration and recorded data. I used it for 8 > days, still didn’t feel better. They gave me back the original > machine. The 90% level for pressure during the 8 nights was 8.3 so we > settled on 10. At this pressure I had few apneas or hypopneas. I had > a coule nights with moderate mask leaks but the tech didn’t think it > was that significant. I did have a score of 40 for leg movements. > They did the special iron level, Ferrutin or Ferrulin. I had a level > of 87, they said they treat for a level of 50 or lower. I use the > CPAP every night and "sleep" for at least 7 hours usually more like 8 > or 8 1/2. I still wake up tired with no stamina and muscular > weakness. Again the odd thing is that I don’t have daytime > sleepiness. > I tolerate the CPAP well. I don’t need to use the ramp to go to > sleep, I read and wait a few minutes until I’m sleepy, put on the chin > strap and then the mask and crank up the machine. > That’s the info I have in my head. Any ideas? I have an appt > scheduled with the sleep MD in Sept and with an ENT who specializes in > sleep disorders to rule out other causes or anything that might > interfere with CPAP. This is also in Sept. > > > Bruce
Response:
- Hide quoted text — Show quoted text -Bruce Perham wrote: > NormC <no…@socal.rr.com> wrote in message <news:3F39333C.9000508@socal.rr.com>… >>Bruce Perham wrote: >>>I’ve been doing CPAP for about 6 – 7 weeks. I’ve tried a full face >>>mask >>Manufacturer and model? > REMaster Pro and I believe a respironics gel nasal mask. >>>and nasal pillows neither of which were great. Now I’m using a >>>gel nose mask which seems to be working well. The problem is that I’m >>>still exhausted when I wake up. Not as bad as the occasional day I >>>don’t use CPAP but not at all what I hope for. I’m thinking more >>>clearly, my BP is a little lower but I don’t have any stamina >>>especially if I try and exercise. The other thing is that I never had >>>the symptom of daytime sleepiness. Any ideas why I’m still physically >>>tired even when CPAP? By the way, I just used the titration machine >>>to determine my optimum pressure and the respiratory therapist I’m >>>seeing says by all his experience I’m getting efectiver CPAP for 6 – 8 >>>hours per night. >>Can’t help much without all of your history, diagnosis, and >>treatment. >>It is essential, for anyone to help, to know, as a minimum, if >>you were tested in a fully equipped sleep lab, if you have a copy >>of your PSG evaluation report, if it was written by an accredited >>sleep doc, if you were manually titrated in a fully equipped >>sleep lab before your use of a titration machine, if you have a >>copy of the lab titration report, and a copy of the titration >>machine report, if you did any home studies, since you’ve been on >>CPAP, etc. etc. > I was tested in a fully accredited sleep lab at Harborview medical > Center in Seattle.
Good. > I had a split night study measuring the sleep > problems for half the night and then trying CPAP. I don’t have the > results in front of me by the RDI was 70 with 46+ apneas and several > hypopneas giving the 70 index score. The report, I believe was > written by a good sleep MD,
Is he listed here: http://www.absm.org/Diplomates/listing.htm > who I’m waiting to see for a follow up. I > was dignosed with OSA, severe. They did a titration in the sleep lab > over a period of three hours yielding a recommended presure of 8.
What happened with your blood oxygen saturation levels? They should have been measured during your sleep test and titration. How were central apneas reported, if at all? > I > tried this, wasn’t feeling better, so they gave me a REMaster Auto > which I was told did titration and recorded data. I used it for 8 > days, still didn’t feel better.
Didn’t they also give you a recording finger oximeter to use for a couple nights, along with the autopap. This would have provided an indication of your blood oxygen saturation and the occurence of central apneas (pressure OK, oxy sat levels down). I used an autopap for a week, with a finger oximeter for two nights, to try and determine why I was continuing to feel lousy. I felt worse with the autopap also. That seems to be the case with people who are experiencing central apnea(s). > They gave me back the original > machine. The 90% level for pressure during the 8 nights was 8.3 so we > settled on 10. At this pressure I had few apneas or hypopneas. I had > a coule nights with moderate mask leaks but the tech didn’t think it > was that significant. I did have a score of 40 for leg movements.
Don’t know anything about this. > They did the special iron level, Ferrutin or Ferrulin. I had a level > of 87, they said they treat for a level of 50 or lower.
Don’t know anything about this. > I use the > CPAP every night and "sleep" for at least 7 hours usually more like 8 > or 8 1/2. I still wake up tired with no stamina and muscular > weakness.
So you aren’t getting quality sleep. You’re just laying in bed with your eyes closed, in a semiconscious state, which most of us called ’sleep’, before we were diagnosed with OSA. < Again the odd thing is that I don’t have daytime > sleepiness.
Does this mean you have no need to take a nap at some time during the day? But you may have difficulty walking a few blocks or up a few steps? > I tolerate the CPAP well. I don’t need to use the ramp to go to > sleep, I read and wait a few minutes until I’m sleepy, put on the chin > strap and then the mask and crank up the machine.
That’s good. However, if you’re using a chinstrap to keep your lips from parting while asleep, the chinstrap may not be working well. Only a full face mask guarantees continued CPAP treatment when ones lips part while asleep. > That’s the info I have in my head. Any ideas? I have an appt > scheduled with the sleep MD in Sept and with an ENT who specializes in > sleep disorders
In the highest poopulated state in the US, California, there are no ENTs who have been diplomated as sleep doctors. As a result I have my doubts about the ENT you will be seeing. > to rule out other causes or anything that might > interfere with CPAP.
Be sure you get an endoscopy of your airways. Don’t go to an ENT who doesn’t have the equipment to do this. And remember that the ENT is probably a surgeon. Get a second opinion about any surgery from a diplomated sleep doc who doesn’t do surgery, which most of them don’t. – Hide quoted text — Show quoted text -> This is also in Sept. >>>Bruce
Response:
NormC <no…@socal.rr.com> wrote in message <news:3F39333C.9000508@socal.rr.com>… > Bruce Perham wrote: > > I’ve been doing CPAP for about 6 – 7 weeks. I’ve tried a full face > > mask > Manufacturer and model?
REMaster Pro and I believe a respironics gel nasal mask. – Hide quoted text — Show quoted text -> > and nasal pillows neither of which were great. Now I’m using a > > gel nose mask which seems to be working well. The problem is that I’m > > still exhausted when I wake up. Not as bad as the occasional day I > > don’t use CPAP but not at all what I hope for. I’m thinking more > > clearly, my BP is a little lower but I don’t have any stamina > > especially if I try and exercise. The other thing is that I never had > > the symptom of daytime sleepiness. Any ideas why I’m still physically > > tired even when CPAP? By the way, I just used the titration machine > > to determine my optimum pressure and the respiratory therapist I’m > > seeing says by all his experience I’m getting efectiver CPAP for 6 – 8 > > hours per night. > Can’t help much without all of your history, diagnosis, and > treatment. > It is essential, for anyone to help, to know, as a minimum, if > you were tested in a fully equipped sleep lab, if you have a copy > of your PSG evaluation report, if it was written by an accredited > sleep doc, if you were manually titrated in a fully equipped > sleep lab before your use of a titration machine, if you have a > copy of the lab titration report, and a copy of the titration > machine report, if you did any home studies, since you’ve been on > CPAP, etc. etc.
I was tested in a fully accredited sleep lab at Harborview medical Center in Seattle. I had a split night study measuring the sleep problems for half the night and then trying CPAP. I don’t have the results in front of me by the RDI was 70 with 46+ apneas and several hypopneas giving the 70 index score. The report, I believe was written by a good sleep MD, who I’m waiting to see for a follow up. I was dignosed with OSA, severe. They did a titration in the sleep lab over a period of three hours yielding a recommended presure of 8. I tried this, wasn’t feeling better, so they gave me a REMaster Auto which I was told did titration and recorded data. I used it for 8 days, still didn’t feel better. They gave me back the original machine. The 90% level for pressure during the 8 nights was 8.3 so we settled on 10. At this pressure I had few apneas or hypopneas. I had a coule nights with moderate mask leaks but the tech didn’t think it was that significant. I did have a score of 40 for leg movements. They did the special iron level, Ferrutin or Ferrulin. I had a level of 87, they said they treat for a level of 50 or lower. I use the CPAP every night and "sleep" for at least 7 hours usually more like 8 or 8 1/2. I still wake up tired with no stamina and muscular weakness. Again the odd thing is that I don’t have daytime sleepiness. I tolerate the CPAP well. I don’t need to use the ramp to go to sleep, I read and wait a few minutes until I’m sleepy, put on the chin strap and then the mask and crank up the machine. That’s the info I have in my head. Any ideas? I have an appt scheduled with the sleep MD in Sept and with an ENT who specializes in sleep disorders to rule out other causes or anything that might interfere with CPAP. This is also in Sept. – Hide quoted text — Show quoted text -> > Bruce
Response:
I’ve been doing CPAP for about 6 – 7 weeks. I’ve tried a full face mask and nasal pillows neither of which were great. Now I’m using a gel nose mask which seems to be working well. The problem is that I’m still exhausted when I wake up. Not as bad as the occasional day I don’t use CPAP but not at all what I hope for. I’m thinking more clearly, my BP is a little lower but I don’t have any stamina especially if I try and exercise. The other thing is that I never had the symptom of daytime sleepiness. Any ideas why I’m still physically tired even when CPAP? By the way, I just used the titration machine to determine my optimum pressure and the respiratory therapist I’m seeing says by all his experience I’m getting efectiver CPAP for 6 – 8 hours per night. Bruce
Response:
Bruce Perham wrote: > I’ve been doing CPAP for about 6 – 7 weeks. I’ve tried a full face > mask
Manufacturer and model? > and nasal pillows neither of which were great. Now I’m using a > gel nose mask which seems to be working well. The problem is that I’m > still exhausted when I wake up. Not as bad as the occasional day I > don’t use CPAP but not at all what I hope for. I’m thinking more > clearly, my BP is a little lower but I don’t have any stamina > especially if I try and exercise. The other thing is that I never had > the symptom of daytime sleepiness. Any ideas why I’m still physically > tired even when CPAP? By the way, I just used the titration machine > to determine my optimum pressure and the respiratory therapist I’m > seeing says by all his experience I’m getting efectiver CPAP for 6 – 8 > hours per night.
Can’t help much without all of your history, diagnosis, and treatment. It is essential, for anyone to help, to know, as a minimum, if you were tested in a fully equipped sleep lab, if you have a copy of your PSG evaluation report, if it was written by an accredited sleep doc, if you were manually titrated in a fully equipped sleep lab before your use of a titration machine, if you have a copy of the lab titration report, and a copy of the titration machine report, if you did any home studies, since you’ve been on CPAP, etc. etc. – Hide quoted text — Show quoted text -> Bruce
Response:
On 12 Aug 2003 07:57:46 -0700, Bruce Perham wrote: >The problem is that I’m still exhausted when I wake up. >Not as bad as the occasional day I don’t use CPAP >but not at all what I hope for. >Any ideas why I’m still physically tired even when CPAP?
The amount of sleep people need varies a lot, most people try to get by on too little!
Response:
) mike > Mike, > When you had the endoscopy done, did the doc mention anything about your trachea > being abnormally small? Apparently, this is common with OSA. Did you have a > Cephlometric X-Ray before your surgery? > Best Wishes, Bear 