Almost 2 years in, still not doing well, what more can I do?

[sventory]

I have acclimated completely to the CPAP, I use a full face mask, I've got no problem using it and use it every night, but I still don't sleep very well and I still am tired every single day, yet my AHI is quite low, always 3 or less. What more can I do? If I had to guess I'd say I'm having a bunch of RERAs not properly detected by the CPAP since that isn't as accurate without and EEG. I had sleeping problems for years before I was properly diagnosed, looking back at one of my earlier sleep tests, I had a 6.8 index of only RERAs and not a single apnea, so I did not get any treatment for years. Now I finally have CPAP, and certainly I sleep better than NOT using it (which is absolutely terrible), but I still wake up 5 times a night or so, still feel like shit when getting up, just not as shitty. I've used sleepy head to set extra flags that are almost apneas, either by duration (8-9 seconds) or flow restriction by 70% for at least 8 seconds and I do get numerous user flags a night as well, but they don't count towards AHI.

I've tried playing with the pressure, right now I have it set from 12.6-16. It never goes above 14.5. I tried starting it at 14.5 and going up to 18, seems to make it worse. Less though and it's not very good either, the thing is, at my current pressure, I still feel myself throat almost closing often when I nearly completely relax and go limp, there's really small space back there. I just don't know what to do, I long for the day where I can wake up feeling even the slightest bit refreshed.

[kteague]

I took just a glance at some of your old posts. Can you tell us if there are any other identifiable contributors to feeling bad, such as medication side affect or limb movements during sleep? Don't know if it is an option for you, but one thing that benefitted me greatly was having a sleep study while using my CPAP at its proven effective settings. It enabled the doctors to see what was happening during my usual sleep. Repeat diagnostic studies and titrations were worthless for me, but a study while using CPAP as usual proved helpful and revealing. Good luck with things.

[Julie]

Yes, definitely get tested for other possible problems that may have nothing to do with OSA, or only be incidentally related. We tend to forget that we're just as prone to those as anyone else.

[sventory]

There's nothing, I don't have periodic limb movement, I don't take any medications, I've had tons of tests, ultrasound of various parts of my body, all kinds of bloodwork including thyroid and other common causes of low energy, even a brain MRI, everything is otherwise normal. There was a period coming off benzos where it was horrible, but I've long since stopped that.

Ugh it really sucks if that is my only option, yet another lab sleep study, who sleeps good in those sterile hotel-esque rooms? Where they kick you out after too little hours as long as they got "data". Just to show yeah you are having apneas and RERAs, great, I could have guessed that, now why isn't CPAP helping me much?

[M3T4LLik4]

Not making any suggestions here, but perhaps you could talk to a therapist. Depression, Anxiety, and chronic stress are all potential reasons for continuing to feel sleepy. I also read about something called "true residual sleepiness." Here is an article: http://www.enttoday.org/article/residua ... gologists/

I hope this helps

[kteague]

I still feel myself throat almost closing often when I nearly completely relax and go limp, there's really small space back there.

What position do you sleep in?

[49er]

I still feel myself throat almost closing often when I nearly completely relax and go limp, there's really small space back there.

This may or may not be applicable but you might want to take a look at these links:
https://www.google.com/search?q=epiglot ... ottis+cpap

[EdNerd]

I recommend the book "The Sleep Solution" by Dr. W. Chris Winter.
He's got a lot of good info on fatigue vs sleepiness.

Ed

[robysue]

sventory,

I'm sorry that it's been almost two years and you are still not feeling as well as you'd like to.

There are several things that you've written that I want to talk about in particular, but first some overall questions based on what you've written:

1) When was your last in-lab sleep test done? And is your official sleep disordered diagnosis OSA or UARS?

2) What are your machine's current settings?

3) What settings have you recently tried *other* than the ones you are currently using?

4) You say that you haven't sleep well in years and years. Have you always had a problem with frequent wakes at night?

5) Have you ever kept a sleep journal? If so, what do you remember about it? What did you keep track of? And how long did you keep it?

6) What does your overall sleep hygiene look like? In particular, have you got a relatively stable sleep schedule? And how much caffeine do you consume and when is the last dose of caffeine?

7) How long does it take you to get to sleep at the beginning of the night? How long does it take you to get back to sleep after you wake up in the middle of the night? And what's the first thing you do when you find yourself awake in the middle of the night?

8) How much time in bed do you get on a typical night? How much of that time do you think you are actually asleep? Just guess on that latter question.

Now for some particular comments about things you've written.

I have acclimated completely to the CPAP, I use a full face mask, I've got no problem using it and use it every night, but I still don't sleep very well and I still am tired every single day, yet my AHI is quite low, always 3 or less.

CPAP fixes sleep disordered breathing, but it doesn't address any other sleep problem. If there are things in addition to the sleep disordered breathing (which includes both OSA and UARS) that are causing your sleep to be bad, you have to fix those other things as well as the sleep disordered breathing problem.

What more can I do? If I had to guess I'd say I'm having a bunch of RERAs not properly detected by the CPAP since that isn't as accurate without and EEG.

The usual fix for residual RERAs is more pressure. What are your current settings? Have you ever tried increasing them 1-2cm? If so, what happened?

Also on a sleep test, a RERA is basically a flow limitation with and EEG arousal at the end of it. So what does your flow limitation graph look like? Is it busy? Or pretty boring? If your flow limitation graph has a lot of activity in it, then that also suggests that a increase in pressure may help address your on-going problems.

I had sleeping problems for years before I was properly diagnosed, looking back at one of my earlier sleep tests, I had a 6.8 index of only RERAs and not a single apnea, so I did not get any treatment for years.

Were you treated for plain old insomnia instead of UARS/OSA when your AHI was basically 0 and your RDI was 6.8? If so, what did the doc suggest for the "insomnia"? Were you put on sleeping pills of some sort? If so, what were they and did they help at all?

Now I finally have CPAP, and certainly I sleep better than NOT using it (which is absolutely terrible), but I still wake up 5 times a night or so, still feel like shit when getting up, just not as shitty.

How long between wakes? Do you often get at least 90 minutes between the wakes? Or are they usually spaced much closer than 90 minute intervals?

And how long does it take you to get back to sleep after a wake?

And when you wake up, is there any identifiable thing that is bothering you? Too hot? Too cold? Need to go to the bathroom because of a full bladder? Back pain? Neck pain?

I've used sleepy head to set extra flags that are almost apneas, either by duration (8-9 seconds) or flow restriction by 70% for at least 8 seconds and I do get numerous user flags a night as well, but they don't count towards AHI.

What is numerous? Are we talking about 10-20 over the course of a 7-8 night of usage or are we talking about 50-60 over the course of a 5 hour night?

And do those extra flags correspond to higher places on your flow limitation graph? (The Resmeds draw a flow limitation graph rather than using individual "flow limitation flags" like the PR machines do.)

Since you are using AutoSet mode, does your machine typically increase the pressure when several of these events occur close to each other?

I've tried playing with the pressure, right now I have it set from 12.6-16. It never goes above 14.5. I tried starting it at 14.5 and going up to 18, seems to make it worse.

Worse in what way? You just feel worse, but the data looks about the same? Or the data looks worse and you feel about the same? Or you feel worse and the data looks worse?

Also---any tendency towards aerophagia when you use higher pressures?

And have you ever experimented with using a straight fixed pressure instead of Auto? Some people do better with a fixed pressure: Sometimes they're sensitive enough to small pressure changes and when the Auto kicks in and starts increasing the pressure, their sleep is disrupted by the pressure change.

Less though and it's not very good either, the thing is, at my current pressure, I still feel myself throat almost closing often when I nearly completely relax and go limp, there's really small space back there.

Before CPAP did you ever notice your breathing when you were just about ready to doze off---i.e. when you were nearly completely relaxed and ready to go limp?

One problem some of us have is that once we're put on PAP, we start noticing a whole lot of things about our breathing that we never noticed before. And that in and by itself can wind up causing additional sleep problems. If you are repeatedly startling yourself awake just as you're drifting off because of the sensation in your throat, the problem may be that you're just more focused on your breathing and the way your throat feels than you need to be. Fixing that can be as simple as giving your mind something else to focus on. In my case, I need to have some music (Gregorian chant music in particular) playing while I'm falling asleep. Otherwise I wind up noticing all kind of silly sensations in my throat and that can wind up making it much harder for me to fall asleep. Without the chants, I'll sometimes startle myself awake in what I now think is nothing more than a perfectly normal "sleep onset CA" that is sometimes flagged (as a CA or an H) and sometimes not flagged by my machine.

There's nothing, I don't have periodic limb movement, I don't take any medications, I've had tons of tests, ultrasound of various parts of my body, all kinds of bloodwork including thyroid and other common causes of low energy, even a brain MRI, everything is otherwise normal. There was a period coming off benzos where it was horrible, but I've long since stopped that.

So many of the usual suspects of "bad sleep" have been ruled out.

Has depression been ruled out? Fatigue combined with sleep problems is a typical symptom of depression.

And have you considered the idea that maybe you have plain old sleep maintenance insomnia as well as sleep disordered breathing? And maybe a touch of sleep onset insomnia if you often startle yourself awake as you are just drifting off?

Given your comment about the benzos, I'll assume that at some point you were put on a sleeping pill and that you don't want to start taking them again.

But there are other ways of treating insomnia. Have you considered using cognitive behavior techniques for insomnia? There are a bunch of self-help for insomnia books out there that are based on CBT-I. Some sleep docs are willing to either direct CBT-I or refer an interested patient to a doctor or therapist who does CBT-I.

Ugh it really sucks if that is my only option, yet another lab sleep study, who sleeps good in those sterile hotel-esque rooms? Where they kick you out after too little hours as long as they got "data". Just to show yeah you are having apneas and RERAs, great, I could have guessed that, now why isn't CPAP helping me much?

If previous sleep studies have ruled out things like PLMD and other problems, I can understand your reluctance to go back to the lab. Still an in-lab study using your current CPAP settings might be enlightening.

But there are other alternatives. It could be that your sleep doc might be willing to have you wear an ActiGraph device for a week or so and then down load the data. That would allow give you and your doc some high quality data about the number of times you are actually waking up at night. (When my sleep doc ordered that test for me, we were both somewhat shocked that the ActiGraph data showed me waking up about three or four times more often than I was remembering waking up.)

In lieu of an ActiGraph, you could see what setting a FitBit or similar device to the "sensitive sleep" setting reveals about the number of times you are awake or restless during the night and try to correlate the FitBit data to the CPAP data.

But regardless of what you decide to try, I think that a keeping a simple sleep log for a 2-3 weeks might be enlightening in terms of identifying whether your problem is more plain old insomnia or more inadequate PAP therapy.