FEELING EXHAUSTED AFTER 8 HOURS OF CPAP

Hi, again, Everyone.

Well, this is BarbMarch58 back with my second unique CPAP issue. If you read my post about severe nausea - feel free to skip the below until you get to "Here's problem #2" so you can give me some feedback!

22 years ago I had a sleep study with the day-time component to confirm what I had suspected. I was diagnosed with IDIOPATHIC HYPERSOMNIA. Ever since then I’ve been successfully treated with medications.

Well, my faithful doctor who has seen me through this journey recently passed away.

My new MD, took a full history (and not only did he know what IH is – but he knows exactly how to treat it!)

[As an aside I was amazed that many doctors certified in Sleep Medicine that I interviewed in Cleveland where there’s a REALLY BIG HOSPITAL (yep, you guessed it!), had either not heard of it or told me that it was a synonym for Narcolepsy.]

Since it had been a number of years since my last study, combined with the fact that IH patients seem to “acquire” Sleep Apnea along the way, I had a new study.

Sure enough, I have a mild case of Sleep Apnea (along with IH) and the MD wanted me to be on a CPAP.

I got it. I used it. I loved the fact that I could use it w/o discomfort, etc. Mine has a computer score that I can get every morning to see how I was doing. Every single day I scored “100!!”

Here’s problem #2. I was loving getting those "100" scores - it was the high point of my day! (I don't really have a life...LOL)
But, it soon occurred to me that getting high scores was great, but the purpose of using the CPAP was to give me more wakeful, alert hours during the day. Although I still take meds for the IH, there has definitely been a measurable loss of wakefulness in the last 3-4 months. I believed, as my doctor did, that I could get that little "push" from using the CPAP. My results are exactly the opposite - I'm much more tired (some days simply exhausted) when I use the CPAP. My doctor said that in his 35 years of prescribing CPAP therapy, he has never seen a case where the absence of "sleep events" actually made the person feel worse. HAS THIS EVER HAPPENED TO YOU? Please respond with a yes or no - we're doing a little informal survey.

Thank you so very, very much!

Thanks – please let me know whether your answer is “yes” or “no” – my MD wants a little informal poll to help him guide me to a solution

Not sure what scores you are referring to but if you are talking about AHI ... higher scores equal bad therapy.

CPAP is like golf, the lower the AHI number, the better.

Fill out your member profile with machine and mask type and check your machine to see exactly what score you are looking at.

I believe she's talking about the score like on a Resmed machine where you want to score 100. Every mask off, leak, etc drops the score below 100.

Where are your prescribed settings at now? Very often they'll have been set by someone who believes auto machines will auto. find the 'right' level by themselves, but in fact events may register at too high a level for the settings to catch up with and so those need to be bumped to higher places for you to get adequate therapy.. but we can't advise much without knowing more.

BarbMarch58 wrote: But, it soon occurred to me that getting high scores was great, but the purpose of using the CPAP was to give me more wakeful, alert hours during the day. Although I still take meds for the IH, there has definitely been a measurable loss of wakefulness in the last 3-4 months. I believed, as my doctor did, that I could get that little "push" from using the CPAP. My results are exactly the opposite - I'm much more tired (some days simply exhausted) when I use the CPAP. My doctor said that in his 35 years of prescribing CPAP therapy, he has never seen a case where the absence of "sleep events" actually made the person feel worse. HAS THIS EVER HAPPENED TO YOU? Please respond with a yes or no - we're doing a little informal survey.

The first 4 months of using CPAP left me far, far more exhausted in the daytime that I was before starting CPAP. And before CPAP I did not have severe problems with daytime sleepiness. Within two weeks of starting CPAP I had become terrified I would fall asleep at the wheel and the evidence of micronapping was overwhelming. And I was using the CPAP all night long, every single night. At the end of the first two weeks of PAPing, my sleep doc switched me from CPAP to APAP. At the end of the first three months of PAPing, he switched me from APAP to BiPAP. Aerophagia was a huge issue for me during those first four months. The BiPAP helped tremendously with getting the aerophagia under control.

It took another 4 months of BiPAPing before things started to turn around. But by about 9 months into PAPing, I finally started to feel *better* than I had before I started CPAP.