OSA+Hypersomnia=unbearable UPDATE

[LARS929]

Update: Please read my recent post on the second page, I have a few questions about the advice I was given.

I was diagnosed in the end of July with Mild OSA and was put on a CPAP machine by mid-August. I used the machine without missing a single day until November when I contacted my DR to tell him it wasn't helping at all. He decided I needed another study, but this time a nap study.

I went in and did the nap study, I fell asleep all 5 times, and my average time before falling asleep was 5 minutes. I did not go into dream sleep so it was not narcolepsy, but instead I was diagnosed with extreme hypersomnia. My doctor put me on Provigil, which didn't do much and was too expensive, so he changed me to ritalin. It worked decently, but I was allergic and got very bad hives on my body. Then he changed me to Adderall about 3 weeks ago.

I have been taking 20 Mg's when I wake up, and then 10 later in the day. It works for a little while, but it does not seem to be a good enough answer to me. If I had to live the rest of my life feeling like I do, I would be fairly miserable.

My question is, does anyone know if there is a way to TREAT the hypersomnia? Rather than try to use drugs to just make myself more alert. Has anyone had a similar experience and found the underlying reason for hypersomnia? It seems to me that there has to be a way to fix whats wrong, but I could be wrong.

ANY insight would be great! Thanks!

[snnnark]

I'm not a doctor but common sense tells me the way to treat the hypersomnia is to ensure that you are sleeping properly. What kind of results are you getting? I did a quick review of your posts but I don't see any data regarding your daily AHI, leaks etc. Are you still having the wake ups? Do you have your original sleep test results and was this latest test an over night PSG with MSLT or just the nap test.

Have you considered or been tested for other fatigue causing issues e.g. thyroid levels, vit D deficiency, depression etc?

Sorry to bombard you with questions but hopefully it'll stimulate discussion that will get you closer to better sleep!

[kteague]

I agree with snnark, and would have some of the same questions. It's one thing to be on CPAP, to have the treatment be optimized and therapeutic can be a different story. In my mind, if that step is not first, you could be "chasing rabbits" trying to figure out why the symptoms remain. A process of elimination is clearer if it's systematic. Also, are you getting adequate hours of sleep each night and does that sleep seem restful or is it restless? I recognize your description of unbearable - I remember doubting how much longer I could muster the energy to survive, much less thrive. I happen to be dealing with limb movements during sleep in addition to the OSA. Hopefully you are able to pinpoint why you still feel so bad and work toward resolving it. Taking stimulants can be necessary at times, but I think it should not be the first or only answer. Sound like your docs are trying to find answers, but to be honest, you know yourself best and input from others who share your experience is likely to give you the clue that will be your answer(s).

[Pugsy]

Do you have the software for your machine so that you can see what is happening? Do you want the software?

I will share this with you about my experience. I have been using my auto machine for nearly 2 years and despite having very excellent numbers (and reports) I still had the need (sometimes extreme need) to nap often during the day until last Dec. Decent number of hours of sleep being 6-7. Still tired.. I found that my back pain was keeping me from keeping "good" restorative sleep. I kept working at things trying to improve. Finally with the addition of a new bed last Dec which helped the back pain, I finally can say that I don't have the need to nap during the day. Such a simple little change...

Not saying that this is your problem, only saying that sometimes there are other factors involved, like Kteague said.
So look closely at your reports to see if things at least appear good on paper. Then look closely at any other things which might impact the restorative powers of the sleep. Look closely at the number of hours you sleep.
Anything that might impact the quality of sleep. Wake often? Pain?

[Country4ever]

As others have said, you need to have a general work-up.....including blood sugar, thyroid, cardiac, etc.
Are you sure your cpap is working right? Are you able to access the numbers?
You should even consider a food intolerance.

[DreamDiver]

As others have said, you need to have a general work-up.....including blood sugar, thyroid, cardiac, etc.
Are you sure your cpap is working right? Are you able to access the numbers?
You should even consider a food intolerance.

+1...
Sleep Hygiene should also be consider. (Google 'sleep hygiene').
Please show us some numbers from your machine!
Check Uncle_Bob's signature for where to get the software if you don't already have it.

[SleepingUgly]

The differential diagnoses for excessive daytime sleepiness are nearly endless. If they diagnosed you with Idiopathic Hypersomnia, I don't really understand that. OSA sometimes has EDS associated with it that does not remit. So in the presence of an OSA diagnosis, I don't understand how any hypersomnia can be "idiopathic" when it could always be attributed to OSA. But anyway. You're tired, so the question is what to do about it.

I agree with everyone that already said that you need to optimize your treatment of the condition you ARE known to have, OSA, and searching for other possible reasons for your sleepiness (lab work, sleep hygiene, etc.). You can do all that WHILE you are taking wake-promoting agents (although beware of taking stimulants too late in the day lest you cause insomnia/disrupted sleep that will in and of itself cause EDS). If you find a solution, you may not need those agents anymore.

How much Provigil were you taking? (Also, hasn't it gone generic now and thus would be less expensive?) Another option is Nuvigil, although that will be very expensive as well. There are higher doses you could take, and other stimulants you could try. In my personal experience, wake-promoting agents do not work perfectly in the presence of a primary sleep disorder that is not well controlled. So we're back to the advice that you post your data and look into optimizing your OSA treatment...

[LARS929]

Thanks so much for all of these posts. I do check my data on a fairly regular basis and the numbers seem fine to me but a will post them when I get home tonight or tomorrow. Also I don't recall the names of my tests, but the first was a sleep study where they just kept me overnight and I was hooked up to a bunch of cords but no cpap. The second time a slept with the cpap and hooked up to cords, them during the day napped 5 times with 2 hours between each nap.

In general when I wake up I want to lay in bed forever, I get 8 or more hours everynight. It feels like I am restless all night though, even though my numbers appear great. My ahi is below two almost all nights. Sometimes when a sleep without my machine which is rare, I feel like I slept much better initially, but get more tired late in the day.

Oh I had blood work done and anything somewhat common was ruled out.

[LoQ]

LARS929, I would ask your doctor to prescribe an overnight oximetry test at home.

[kteague]

What did you reports say about limb movements?

[snnnark]

In general when I wake up I want to lay in bed forever, I get 8 or more hours everynight. It feels like I am restless all night though, even though my numbers appear great. My ahi is below two almost all nights. Sometimes when a sleep without my machine which is rare, I feel like I slept much better initially, but get more tired late in the day.

If you are not getting into the deeper levels of sleep then you are going to feel like crap no matter how long you stay in bed. Do you have copies of your sleep studies especially the graphs that show your sleep stages?

Oh I had blood work done and anything somewhat common was ruled out.

Including the vit D levels?

[LARS929]

I downloaded my data and here are the numbers for the last 3 months of data:

Median daily usage: 8.37 hrs Days not used: 10 Days used: 81
Apnea Index: 2.5 Obstructive: 1.7 Central: 0.7 Unknown: 0.0
Hypopnea index: 0.0 AHI: 2.5
Leak: Median: 0.0 95th percentile: 2.4 Maximum: 10.8
Pressure: Median: 6.2 95th percentile: 7.7 Maximum: 7.9

If I remember correctly my AHI during my test was about 13. And I do not have my results, but I did spend a good amount of time in REM sleep for long periods of time.
As far as limb movements, he said I have a small amount of restless legs, I think he said it woke me up 3-4 times an hour, not sure if that's right.

My sleep hygiene could be an issue, I don't feel all that comfortable in bed sometimes. And I wake up with a stiff neck and my back hurts at times. I sleep with ear plugs because I have a roommate who gets up before me, so noise isn't an issue. It gets light in my room in the morning, but is dark at night. I sleep pretty much the same hours every night though.

I am not sure what blood tests were done, but I don't think Vit. D levels were tested. That being said I was taking Vit. D for a month and it did nothing for me that I recall.

When I took provigil it was the lowest amount, not sure what the dosage was, but I doubled it for a week and the results weren't much better.

Also whenever I wake up I feel like my whole head is cloudy and it is like my mind isn't going to turn on. Some days it does, others it doesn't do much for the majority of the day.

[Mary Z]

You've gotten a lot of good feedback here. As someone with hypersomnia, I have found the only answer to be a stimulant medicine of some kind. Nuvigil in the 250 mg dose works best for me, but it is expensive. I didn't have good luck with adderal. In the absence of any other problem such as depression, hypothyroid, low vitamin d, and with your OSA therapy optimized you may just need to take a stimulant med. I find I don't need it every day now, but if I wake up and can't get going, just feel like going back to bed I do take it. Provigil at a 200 mg dose does not help me.
Good Luck.

[LoQ]

I don't feel all that comfortable in bed sometimes. And I wake up with a stiff neck and my back hurts at times.

I would investigate that a little further. That looks like the chief suspect at this point. It says to me that you are not sleeping well. The question is, why are you not sleeping well? Perhaps you need a different mattress? Is your mask bothering you? Etc.

[Pugsy]

LARS929 wrote:I don't feel all that comfortable in bed sometimes. And I wake up with a stiff neck and my back hurts at times.


I would investigate that a little further. That looks like the chief suspect at this point. It says to me that you are not sleeping well. The question is, why are you not sleeping well? Perhaps you need a different mattress? Is your mask bothering you? Etc.

I would second LoQ's idea.
I have been on the machine nearly 2 years now. After some tweaking initially, I settled in and had numbers that were quite good and yet I still had the need to nap several times a day. I gradually worked up to getting more hours of sleep and still wanted and needed to nap. It wasn't until I got a new bed last December that the daytime sleepiness has gone away. Rarely need to nap. Energy level is gradually coming up. I have a bad neck and bad back from some old injuries. I always new that the pain was affecting the overall quality of my sleep but I never dreamed that I would see such a difference simply with a new type of bed.