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Trying CPAP one last time... AHI looks really bad - Printable Version

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RE: Trying CPAP one last time... AHI looks really bad - Marillion - 07-16-2019

Sometimes it can take a month to get fully used to the machine and sleeping with it or potentially even a bit longer. How many total hours of sleep are you getting most nights? Could it be that you need to increase how much time you are actually sleeping to feel better? The machine cannot replace lack of total amount of time in sleep we need. It can only improve the quality of your sleep and prevent the extra wear and tear on your body that sleep apnea causes.


RE: Trying CPAP one last time... AHI looks really bad - gsilver - 07-16-2019

If I could increase the amount of sleep I got, I'd have done it *years* ago.
I'm allocating on average of 9-10 hours a night (not counting time that I have to lie down for naps) to try to sleep.
I've been lying down for the night around 10:00 - 11:00, putting on the mask when I start feeling sleepy, then turning it off usually after I've been awake for 30 minutes or so knowing that I won't get back to sleep any time soon.
Not using the mask, I was generally able to sleep through until 5:00 or so before being awake for a while, but with the mask, I'm waking up for a long period of time as early as 12:30, but usually more around 2:30 - 3:30.

I may eventually fall back asleep, and then drag myself out of bed some time between 8:00 - 8:30.

Recently (like since starting the machine), I'm having to lie down for my first nap between 10:30 - 11:00. I'd probably take it even earlier if I felt like work would let me take a break sooner than that.


RE: Trying CPAP one last time... AHI looks really bad - Dormeo - 07-16-2019

gsilver, your experience sounds really rough.  Several things about it made me recall something I read about earlier: cognitive behavioral therapy for insomnia.  Here is information from the Mayo Clinic that you might want to take a look at:

https://www.mayoclinic.org/diseases-conditions/insomnia/in-depth/insomnia-treatment/art-20046677


RE: Trying CPAP one last time... AHI looks really bad - Marillion - 07-16-2019

(07-16-2019, 01:05 PM)gsilver Wrote: If I could increase the amount of sleep I got, I'd have done it *years* ago.
I'm allocating on average of 9-10 hours a night (not counting time that I have to lie down for naps) to try to sleep.
I've been lying down for the night around 10:00 - 11:00, putting on the mask when I start feeling sleepy, then turning it off usually after I've been awake for 30 minutes or so knowing that I won't get back to sleep any time soon.
Not using the mask, I was generally able to sleep through until 5:00 or so before being awake for a while, but with the mask, I'm waking up for a long period of time as early as 12:30, but usually more around 2:30 - 3:30.

I may eventually fall back asleep, and then drag myself out of bed some time between 8:00 - 8:30.

Recently (like since starting the machine), I'm having to lie down for my first nap between 10:30 - 11:00. I'd probably take it even earlier if I felt like work would let me take a break sooner than that.

Unfortunately, because you are not getting enough continuous sleep and waking up too often.  The machine will be of limited benefit to you as far as feeling physically better rested.  Somehow, you need to look into increasing your continuous amount of sleep time and not waking up quite so often.  The 9-10 hours allocated is of not much use when you are really only getting closer to say, 6-7 hours of real sleep.  Dormeo linked a good article and perhaps others will be along with more ideas.  Your doctor may also give you some good suggestions.  I wish you the best of luck with this.  Don't give up with the machine!  It's clear that you need to use it.  You just need to fix the rest of the sleep equation to help you feel well rested and not need the naps.  Keep in mind, too many (and too long) naps will also make it difficult to sleep through the night!


RE: Trying CPAP one last time... AHI looks really bad - gsilver - 07-23-2019

Well, I finally got into see the new doctor, and after going through my charts, stating how I still don't feel better (despite my AHI on the ASV being below one nearly every night, with nearly a month of full compliance, excluding the last week, when I've had a broken air conditioner) his recommendation is to go back to the oral appliance, since I did at least feel marginally better with that, and after a month back on that, try another sleep study. In the new sleep study, he'll specifically be looking for central sleep apnea events.

He pointed out that they didn't start seeing significant central events until I started using the bipap, and centrals weren't a significant component of my prior sleep studies (which saw mostly obstructive hypopneas). He agreed that the ASV is appropriately treating the centrals that were seen with the bipap machine, but the centrals may be caused by pap treatment in the first place.
He also pointed out that two of my previous doctors gave me a primary diagnosis of ideopathic sleep apnea after two different MSLTs, and that one sleep study (shortly after a sinus surgery) showed few enough apnea events to even be diagnosed with sleep apnea.

He also recommended that I look into the Emory sleep center, given their studies into ideopathic hypersomnia and that I've been seeing sleep doctors for my issues for close to 20 years at this point.

Woo?


RE: Trying CPAP one last time... AHI looks really bad - Dormeo - 07-23-2019

I can certainly see possible benefits in another sleep study, and I understand why the doctor would want you off the machine for a period of time before the study.  (I gather that sometimes there is residual PAP benefit for some number of days after cessation that can confound the results of the study.) I don't quite understand the doctor's interest in a diagnosis of idiopathic hypersomnia, though, since your sleep is fragmented and that fact alone seems to explain your hypersomnia.  I hope you feel he heard you when you described your night-time wakefulness.  Please keep us posted.


RE: Trying CPAP one last time... AHI looks really bad - gsilver - 07-23-2019

(07-23-2019, 01:41 PM)Dormeo Wrote: I can certainly see possible benefits in another sleep study, and I understand why the doctor would want you off the machine for a period of time before the study.  (I gather that sometimes there is residual PAP benefit for some number of days after cessation that can confound the results of the study.)  I don't quite understand the doctor's interest in a diagnosis of idiopathic hypersomnia, though, since your sleep is fragmented and that fact alone seems to explain your hypersomnia.  I hope you feel he heard you when you described your night-time wakefulness.  Please keep us posted.

I specifically asked him if he would recommend a refill of Zaleplon, a medication that a previous doctor prescribed specifically for night time awakenings, and he said that he preferred to not prescribe anything for night time awakenings.

I'm debating whether or not to call my old doctor for a refill.


RE: Trying CPAP one last time... AHI looks really bad - Dormeo - 07-23-2019

I see this on a Federal web site:

Zaleplon is used on a short-term basis to treat insomnia (difficulty falling asleep). Zaleplon does not help you to stay asleep longer or decrease the number of times that you awaken during the night. Zaleplon is in a class of medications called hypnotics. It works by slowing activity in the brain to allow sleep.

So maybe it's not quite right for you.  What surprised me is that the new doctor thought your daytime somnolence was "idiopathic," or of an unknown cause.  But it occurs to me that maybe he meant your frequent awakenings at night were of an unknown cause.  Either way, I hope the new sleep study will help to explain what is going on.


RE: Trying CPAP one last time... AHI looks really bad - ajack - 07-23-2019

It sounds like you are on the right path, with your new doctor. See what the new sleep study says after everything settles down. If it recommends a machine. Have a chat with him about that, pressure induced CSA generally resolves over 12 weeks for most people.
I would follow the doctors advice and discontinue Zaleplon for now. it may help in his diagnosis to what is going on.


RE: Trying CPAP one last time... AHI looks really bad - gsilver - 07-24-2019

(07-23-2019, 06:46 PM)Dormeo Wrote: What surprised me is that the new doctor thought your daytime somnolence was "idiopathic," or of an unknown cause.  But it occurs to me that maybe he meant your frequent awakenings at night were of an unknown cause.  Either way, I hope the new sleep study will help to explain what is going on.
I had a daytime MSLT that resulted in the ideopathic hypersomnia diagnosis. They ruled out narcolepsy from it, but saw a sleep latency of about 4 minutes, IIRC. I'm not sure how fragmented sleep affects an IH diagnosis.

My pattern is basically:
Sleepy for entire day, sometimes needing to nap within a couple of hours of getting up (and feeling significantly impaired if I don't) I made it 3-4 days on the machine without napping, but did not sleep any better those nights, and generally felt much worse the next day (I did feel better than average on July 5 and avoided naps on July 4, but I still had a 3 AM awakening on the morning of the 5th). 
Fall asleep very quickly at night (almost always within 5-10 minutes before starting the machine, and still that quickly about half the time even after starting)
Wake up too early (3-5 AM)
Too tired to be able to actually get up until I fall asleep again, but generally not actually sleepy for a while after one of these awakenings. My average time to actually get up has been later than 8 AM. 

So I'm really having both problems.

I checked the machine data, and I woke up long enough to turn the machine off earlier than 3 AM ten times, between 3 and 5:30 AM 20 times, and later than that only 6 times. On most nights, I turned it on once I started feeling sleepy again, though it's kind of hard to remember exactly how long I spent awake on the machine for the last month+. None of the times that I turned off the machine were accidental.