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Tired of using CPAP when I'm still tired
#1
Tired of using CPAP when I'm still tired
I have been a conscientious CPAP user for about 6 years. I am now seriously considering discontinuing its use. In one sense the therapy has been successful—my AHI levels are almost always below 2. (AHIs in 5 home and lab polysomnography tests without the CPAP have ranged from 12 to 21.) However, my ongoing fatigue seems no different with or without the CPAP therapy. 
 
Is there any reason to continue CPAP use that I should be aware of? I do plan to discuss this, as well as any other possible therapies, with my sleep doc in the near future, but I do value the collective wisdom of this forum!

Thanks!
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#2
RE: Tired of using CPAP when I'm still tired
I can think of a good one, and that's so you'll live long enough to use up all your pension and credit.  I mean, who wants to pass on with unused credit?!?!?!  Too-funny 

More seriously, your health is still your prime worry, as foggy, groggy, and generally fatigued you may feel.  If your AHI were to creep back up, even within the first hour (quite likely), to a value approximating your average during PSGs, would you be better or worse off than you are now?

Your question is, how would I know?  I still feel awful.  I can appreciate that.
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#3
RE: Tired of using CPAP when I'm still tired
Ross,

Don't give up. Hang in there. By continuing to use your CPAP, no matter how you may feel, you are taking steps to the possible prevention of life-threatening conditions such as pulmonary hypertension and congestive heart failure.

My mentor once told me that you "treat the patient, not the machine." Perhaps the numbers don't tell the full story and you need a further medical workup from a multi-disciplinary team that includes a hematologist, cardiologist, electrophysiologist, pulmonologist, nephrologist, endocrinologist, etc. Not all at once of course.

Could it possibly be your oxygen saturation levels?
Could it possibly be the medication you take? (When I experienced crushing fatigue, it was a combination of low BP, low HR, and low Oxygen.)

And, I am not being insulting, but have you also considered a psychiatrist to rule-out subclinical depression which also manifests as fatigue.

Wishing you the best.

-- steve
"The object in life is not to be on the side of the majority, but to escape finding oneself in the ranks of the insane." -- Marcus Aurelius
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#4
RE: Tired of using CPAP when I'm still tired
Ross: Yes, definitely get your condition, whatever it is, diagnosed and treated!

It sounds like CPAP is, for you, necessary but not sufficient. Something other than sleep apnea is present? Find out what it is!

Most likely, discontinuing CPAP won't help and will harm. It turns out that being properly oxygenated, along with properly excreting carbon dioxide, is seriously habit-forming (addicting).

Good luck, and wishing you better health soon, if you can find the right doctors. Persevere.
"I wanted to be a Boy Scout, but I had all the wrong qualities.  They were looking for kids who were trustworthy, loyal, helpful, friendly, courteous, kind, obedient, cheerful, thrifty, brave, clean, and reverent.  Whereas I tended to be devious, fickle, obstructive, hostile, rude, mean, defiant, glum, extravagant, cowardly, dirty, and sacrilegious."  (George Carlin)
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#5
RE: Tired of using CPAP when I'm still tired
(01-22-2019, 04:13 PM)Ross Wrote: I have been a conscientious CPAP user for about 6 years. I am now seriously considering discontinuing its use. In one sense the therapy has been successful—my AHI levels are almost always below 2. (AHIs in 5 home and lab polysomnography tests without the CPAP have ranged from 12 to 21.) However, my ongoing fatigue seems no different with or without the CPAP therapy. 
 
Is there any reason to continue CPAP use that I should be aware of? I do plan to discuss this, as well as any other possible therapies, with my sleep doc in the near future, but I do value the collective wisdom of this forum!

Thanks!
I'm experiencing this as a newbie (started CPAP Nov. 29th). My AHIs are all over the place, but when they're good (below 6-ish) I often feel worse.

With expert guidance here, I started looking at minute ventilation and I got an oximeter. It turns out I had terrible oxygen saturation on CPAP (and worse off CPAP). And my minute ventilation goes up when I have more apneas, so perhaps that's why I feel better after an AHI of 8 than AHI of 3.

There are complicating factors for me (aerophagia and reflux), but I'm assuming there must be for you, too. I'm just thinking you need some of the good folks here to take a look at your data and other factors.
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#6
RE: Tired of using CPAP when I'm still tired
Only you can decide for YOU.

For me it was the opposite 5 years ago: I had NO personal immediate symptoms of tiredness or reduced functioning.

To be clear, I snored and got up for the bathroom quite a few times but neither of these bothered ME.

Almost as soon as I started APAP usage (with a P10 which was incredibly lucky) I found it to be MORE PLEASANT than not using it -- I wouldn't stop even if my OSA were magically cured since the immediate benefits of no snoring (for my wife), breathing fresh air while covering my head, but especially keeping my nose open and free of blockage much as the throat stays open so I don't wake with dry mouth or sore throats from drip.

Lately though, even with 100% compliance for 4-5 years, I have been experience some extreme tiredness and my sleep doc prescribed Modafanil which is NOT perfect but is quite an improvement.

My advice: Keep using the machine for a while longer (maybe another year at least), go see your doc and explain what is happening.

I vaguely thought that perhaps Adderal might help but he suggested the Modafanil and that is probably much better than Adderal would be, though we discussed the possibility of adding that on the last visit. (My guess is that if I raise the issue he would write the prescription.)
Sweet Dreams,

HerbM
Sleep study AHI: 49 RDI: 60 -- APAP 10-11 w/AHI: 1.5 avg for 7-days (up due likely to hip replacement recovery)

"We can all breathe together or we will all suffocate alone."
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#7
RE: Tired of using CPAP when I'm still tired
Thanks all for the input. It will make me a better patient when I see the sleep doc today (reportedly "he wrote the book" on sleep medicine).
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#8
RE: Tired of using CPAP when I'm still tired
Just to show that everyone is different I started in 2003 and went from driving off the road, and I don't mean jeeping, crazy to relief on my first night with the insanely high pressure of 18cm
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#9
RE: Tired of using CPAP when I'm still tired
Ross, have you downloaded Sleepyhead? The link is in Bonjour's signature. Some data might help to pinpoint the problem.
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#10
RE: Tired of using CPAP when I'm still tired
What is your sleep hygiene like? How often do you wake up per night? Are you going to bed and waking up at the same time every day? Are you staring at screens late into the night before bed (blue light)?

I'm on week 2 of cbt-i, and before starting I used to think my sleep hygiene wasn't horrible, but now I'm already looking back and laughing at how bad my sleep hygiene actually was, although I'm sure it wasn't as bad as many, many others. I'm already seeing major differences in the way I'm sleeping after a week of restricted sleeping, although it is quite painful, it seems to be working.
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