Doc took me off of cpap shocked, confused (long)

[Pap365]

I was diagnosed with mild sleep apnea over six years ago. At the time my AHI was 9.4 and even though my AHI was just under the criteria for apnea my sleep doctor felt that my AHI combined with my EDS merited CPAP. Thus began a six year journey to find the elusive mask and obtain effective, consistent treatment. During this time I never felt rested and since my numbers were good I assumed it couldn’t be related to my sleep. I discussed my symptoms with my GP and after several tests and exams was diagnosed with fibro. At my appointment with my sleep doc earlier this year I mentioned I was still tired and woke up several times a night. At this time we agreed I would try going off the CPAP and see how I feel. I had another sleep study without CPAP and my AHI was less than 1! It was also observed that I had very little REM sleep. At my follow up visit my sleep doc ordered another sleep study and an MSLT. My follow up is in about two months but my doc told me my AHI was 3.7 and the MSLT was normal. Since I am still experiencing EDS I decided to go back on CPAP. I was having trouble falling asleep with the mask so I asked my sleep doc if I could try using a sleeping pill for a few weeks to readjust to the mask. My sleep doc’s response was that we should discuss this in clinic and that based on my sleep studies and MSLT I should discontinue CPAP as I am having difficulty and that it may be doing me more harm than good. I emailed my doc back and asked what the purpose of a follow up visit would be if everything is normal. I haven’t heard back from my doc. I am in shock. For years I operated under the assumption I had sleep apnea. If its not apnea or narcolepsy what else could it be? Sorry for the long post, I needed to vent.

[sleepstar]

Hmmm... this is a tricky one
Were there any mention of periodic leg movements during the night? Did they tell you whether your arousal index (how many times your brain wakes up in your sleep) was still higher than normal?

[Sheffey]

I had another sleep study without CPAP and my AHI was less than 1! It was also observed that I had very little REM sleep.

Here is what I would try to dig into. Many people, myself included, have much more severe apnea when in REM stage as compared to the other stages.

So you need to have a study where you get some long periods of REM sleep to evaluate the severity of your problem.

There is also positional apnea. They need to look at what positions you slept in. If you only slept on your sides and belly, the study may be masking that your apnea is much more severe when sleeping on your back. Apnea on the back is commonly more severe.

So you seem to have considerable doubt about the diagnosis and I do too.

[Pap365]

SleepStar:
Thanks for responding The study summary states “No significant PLMs were seen on this study with a PLM index of 0.0 per hour and a PLM arousal index of 0.0 per hour. “ I do have RLS but it is well controlled with iron supplements. It was also noted that I had mild increase in my chin EMG during the first REM period but that it did not show up in the second and final REM period.

Sheffey:
Thank you for responding. You have a good point. I never sleep on my back. In fact I can’t fall asleep if I’m on my back. My first study in 06 was in a hospital bed and I had to sleep on my back. For my most recent studies it was noted that I had very little REM sleep and no slow wave sleep. It has been noted on all four of the sleep studies I’ve had that I have little REM sleep and no deep wave sleep. I don’t think this is unique to the sleep study but something that happens all the time.

[HoseCrusher]

First of all let me say that I haven't been able to find references to this, so take it with a "grain of salt."

I was discussing camping with some RT's at a meeting. I enjoy going for an overnight boating trip but the boats are small and don't have adequate power to run a machine at night. In addition we usually end up on the beach and sleep there. It was suggested that after being on xPAP for an extended period of time your throat develops a memory on how to keep the airway open. If this is true, and once again I have not been able to determine this, it would mean that you would have to be off xPAP for an extended period of time before you drop back to your old problems.

My perspective in this discussion was that an occasional single night without using my machine would probably be OK. I don't know if it would apply to your situation.

[ChicagoGranny]

It was suggested that after being on xPAP for an extended period of time your throat develops a memory on how to keep the airway open. If this is true,

That is not true.

[JointPain]

What pressure range were you using?

If it's high enough, you could set the pressure to a fixed, relatively low value (e.g. 6) for say a week and see what does to your AHI. Sort of like an informal sleep study in the comfort of your own bed, which might help you relax and get some more REM sleep.

That's only going to be useful if there's a reasonable difference between your normal treatment pressure and the minimum setting you need to breathe comfortably.

[jnk]

It was suggested that after being on xPAP for an extended period of time your throat develops a memory on how to keep the airway open. If this is true,

That is not true.

Not so fast.

Some researchers have found that there may actually be a bit of a residual effect with CPAP.

"Some data exist suggesting that there is a residual effect of nCPAP, so that after nCPAP, OSAS returns to its pretreatment severity only after several days."--Eur Respir J 1997; 10: 973–976. http://erj.ersjournals.com/content/10/5 ... l.pdf+html

That is why some docs will have a patient go off CPAP for a few nights before attempting to assess whether he still needs CPAP, as I understand it.

[jnk]

. . . diagnosed with mild sleep apnea . . . my sleep doctor felt that my AHI combined with my EDS merited CPAP. . . . six year journey to . . . obtain effective, consistent treatment. During this time I never felt rested . . . My sleep doc’s response was that . . . I should discontinue CPAP . . . and that it may be doing me more harm than good. . . . I am in shock. For years I operated under the assumption I had sleep apnea. If its not apnea or narcolepsy what else could it be? . . .

My understanding as a fellow patient is that the purpose of an OSA diagnosis for low-AHI patients is to see if CPAP will help tiredness and sleepiness. If it doesn't help the symptoms, and the patient's off-treatment AHI is below, say, 15 or so--CPAP makes no sense. The purpose for the treatment for low-AHI people is to make them feel better, and if it doesn't improve anything and sleep problems persist, CPAP itself may be causing more sleep problems than it solves. Figuring out if that is the case for someone may require a lot of good communication between patient and doc, IMO.

But the point is that you may not want to think of things in terms of "do I have OSA or not" but rather to think in terms of "does CPAP benefit me or not." The point is the benefit or lack of benefit from the treatment in a person's individual case more than the technicalities of a diagnosis, as far as its being "correct" or not, when attempting to figure out whether to continue any particular treatment.

[SleepWellCPAP]

Hello Pap365,

In your posts, the interesting things that stick out to me are the mask you were using and also that you said the sleep studies revealed no stage 3. From what I have read, stage three is for your bones, muscles and tissues. Growth hormone is released. Basically, you body says, okay lets get ready for tomorrow. Whenever I see a sleep study that indicates absolutely no slow wave rest, in most cases the patients are really dragging.

I suppose that would explain the EDS.

Since recuperative sleep has as much to do with brain waves as a patent airway, that may be why your doctor is removing the stimulous of pressure therapy. I am not a doctor, but based on my research, that would be my guess. The reason I bring up your mask, is that I have never seen anyone use that particular one sucessfully. I wonder what other masks you've tried.

Please keep posting, you have a very interesting case.

Jim

PS: For jnk, this is a side note, please accept my appologies. Tomorrow I'll be posting CPAP Basics - 4 and I really appreciated your story out of the old west in number 3. I was thinking of starting out with the Slicker and Sheriff Bob if that would be okay?

[SleepingUgly]

Hmmm... You didn't get a lot of REM sleep on your sleep studies, but did you get enough to see what your AHI in REM was? You can have a very significant AHI in REM, and end up with a low one overall, especially if your REM is even further minimized during the sleep study. I would be curious what your REM AHI was on the overall AHI 9.4 study and the recent AHI of 3.7 study. If it's significant, I would argue that your overall AHI is misleading and that you do have OSA. I would also ask if they looked at potential RERAs and took that into consideration.

Are you on a medication that could be suppressing REM? For example, some antidepressants will do that.

I assume your SaO2 was normal on all sleep studies?

I'm reading between the lines here, but I'm guessing that the reason the doctor is having you return for follow-up is because you're still symptomatic (tired). He doesn't believe your sleepiness stems from OSA, so he doesn't see a point to your sleeping with CPAP, which may even be deteriorating your sleep further. He is willing to talk to you about that during an office visit, though.

If its not apnea or narcolepsy what else could it be? Sorry for the long post, I needed to vent.

Unfortunately (for both of us), the list of things that can cause sleepiness is incredibly long (thyroid, depression, chronic fatigue, the list goes on...forever...)

Medications are the first thing I'd look at.

This doesn't sound like narcolepsy with minimal REM and a normal MSLT.

I think your doctor, as well as the rheumatologist who diagnosed you with fibromyalgia, might have ideas as to what to start testing for.

[jnk]

. . . starting out with the Slicker and Sheriff Bob if that would be okay?

No problem. I don't exercise any copyright rights with what I post in public forums. I am glad you are finding ways to be helpful.

@ Pap365: Despite what I said in defense of your doc's statements, I hope you are following what Pugsy and Mollete are saying in pandatx' thread viewtopic/t88204/last-few-nights-have-sucked-.html%20.

[jencat824]

OK, this is just my guess, but I think the Fibro may be playing a part in this story. Fibromyalgia is thought (not proved as I understand it) to disrupt various cycles of sleep, that's what causes the fatigue & muscle aches. I suffer from fibro & my sleep lab diagnosis is OSA, some CSA, PLMD, RLS, Narcolepsy & Alpha Wave Intrusion Disorder. Below is a link to what I found on google about the alpha wave intrusion disorder. My sleep dr explained it to me as being hand-in-hand with fibro & also may have some affects on my MS. I've never heard much about this disorder & although I've searched accepted sources (do a google search for this & you can read what is out this, this is just the best descriptive in my opinion) I haven't found much about it.

http://www.mp3-meditation-club.com/blog ... Sleep.html

Now, Pap365 you may have other disorders, perhaps even undiagnosed as of yet, that contribute to your Fibro & EDS. It seems that XPAP therapy isn't helping much, but if it were me, I'd get a second opinion from another sleep dr or sleep clinic. After all the work you have done it seems kind of counter productive to give it up on one drs word. That's just me saying this, so take what I say with a grain on sand, I'm not a medical professional, although at then end of some days I feel like it. That meaning, I have multiple medical problems & have to remind dr a what drs b,c, & d said about something they didn't pick up in my last visit summary. That happens a lot when patients have multiple problems, you have to remind them of your other problems. I do that with first with a med list that lists each of my diagnosis, then verbally if they don't read my sheet.

After I read your post I was stunned & the only link I could see here was the Fibro & a possible sleep disorder, not OSA but something in your sleep that would make sense with the Fibro diagnosis. I have heard from several of my drs that its good that I'm on XPAP therapy, in terms of my Fibro. Now I have severe OSA among the other sleep disorders, but since I found this forum, I've learned (with a lot of help by Pugsy & others) how to get & read my data & my AHI's treated run from 1.9 to bottom line 0.4. From what I've learned this is excellent, but I STILL suffer from Fibro & MS, among other stuff. I also feel better with XPAP therapy than I did without it.

That doesn't sound the case with you, if I've read this correctly, you are suffering from Fibro & EDS. Do have have any other medical problems? You may want to ask your GP to look for 'zebras' a loosely used medical term for looking for a hard to find problem. You obviously have something wrong in your body, you know it and have been treating as you were instructed to and still don't have any resolution of the problem. Seems to me drs haven't found the problem yet. I know you are probably very confused right now after dr saying 'oh, never mind about the CPAP' - that would throw me for a loop! But you've come this far, perhaps on your own you might try some dietary changes, it has been thrown around in the media a lot lately that a wheat free diet is better for us. Maybe researching your problems on google will help you come to something in your lifestyle you could change to help? I don't really know the answer, I was just moved so much by what was thrown at you I needed to give you as much complete thought as I had when I read your post.

Above all, don't stop until you get a real answer from the medical community, or you find something in research you can take to your dr to say 'is this me? - I think you deserve answers.

Jen

[purple]

Uh, I have a strong opinion that sleeping pills and the need for xPAP do not go well together. Taking a sleeping pill is not likely to be an improvement to sleep. I understand that you feel you should try something different, I would too if I were in your situation.

Have you reviewed all the sleep hygiene stuff. Like getting everything stimulating out of the bedroom, almost no caffeine or stimulants in your life. Going to be at the same time very night, and so on.

In truth, I seem to sleep better after I read a book while lying in bed, just before going to sleep. Then again, I am weird in a lot of ways.

[ChicagoGranny]

That is why some docs will have a patient go off CPAP for a few nights before attempting to assess whether he still needs CPAP, as I understand it.

I assure you that any "docs (who) will have a patient go off CPAP for a few nights before attempting to assess whether he still needs CPAP" are not doing it because of an understanding of the results of that study. That study found:

This prospective study indicates that in patients with
newly-diagnosed OSAS, some of the beneficial effects
of nCPAP applied only during the first part of the night
persist for at least 2 h after nCPAP withdrawal.

If you take the time to read the study you will see they used CPAP on the patients for about the first four hours of the night and then discontinued CPAP for the next two hours. Some improvement was seen during this first two hours compared to earlier diagnostic studies.

This was a very small study claiming to show some improvement during the first two hours of discontinuing CPAP. The study results include a discussion of other studies and there is no clear evidence of a residual effect and there are studies showing there is no residual effect.

If you want to advise Pap365, I suggest you say something practical and not try to impress someone with a link to that study.

ChicagoGramps