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FRUSTRATED: Still tired after 131 days of CPAP
#1
Its been 131 days since I began cpap and I'm still fatigued upon awakening and throughout the day. AHI 1.07 and RERA index 0.39. Leaks are minimal however I find myself waking up 3-4x throughout the night for no apparent reason. Consulted with two sleep doctors who both rely heavily on the numbers and have no additional insight as to why I'm still tired. Was prescribed Provigil and then Nuvigil which neither helped. Full blood workup and vitamin panel including Vitamin D3 were in an appropriate range. No anxiety or depression.

I am running out of patience and options. Will try an oximeter to obtain some oxygen readings. Please help if anyone else has encountered a similar situation. Thanks! Richard
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#2
Pretty much same situation here. Sleep doctors seem to focus on easy patients and collecting compliance data. Anything complicated is pretty much ignored if the pills do not work. I suspect I have narcolepsy but cannot get the doctor to inverstigate that.

Maybe it requires a visit to a teaching hospital where there are more experienced doctors (if you don't get stuck with the student).

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#3
There's a few options to try.

Our bodies and brains have established "normals" whether that normal is good for us or not. Those of use with sleep apnea have had our bodies get used to going on little sleep, waking up umpteen times a night, and feeling tired. That's what our bodies think SHOULD be happening. So when we try to use the machine, many of us, our bodies and brains adjust and that's that. But for some people, their bodies and brains fight it. And despite getting good numbers, it just doesn't seem to be working. The trick is to break the cycle. Research and follow "sleep hygiene" and mental tricks to beat insomnia. Set up a bedtime routine. Same thing every night no matter what. Train your body and brain to this routine. Eventually, it will get used to it and slowly swing the other way.

Another is to seek out a sleep counselor. Someone who specializes in the mental aspects of sleep disorders. Not that you're crazy, far from it! But one of them can help you to figure all this out.

And another is to simply keep working at it. Keep going. There's some folks here who struggled for over a year before they noticed any difference. Despite you not feeling much better, it IS doing your body a world of good. You are doing the right thing. Your heart and other organs thank you.

PaulaO2
Apnea Board Moderator
www.ApneaBoard.com


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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.




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#4
Hi rwin
For some might take few months to get the desired result. Don,t despair, find out whats waking you up, sometimes slight change can make a difference like trying a different mask which is more comfortable or adjusting humidity setting up/down if air fell cold/warm and even experiment with Flex settings from 3-2-1-off, see whats works best for you ... everyone is different
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#5
Welcome , Richard.

A couple of questions: What do you do prior to going to bed? Are you physically tired at bed time?

INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. 
ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA.
INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINIONS ONLY AND NOT NECESSARILY STATEMENTS OF FACT.
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#6
I have been on mine for two years and am still tired when I wake up. I have the machine set perfect and my mask is comfortable. My AHI is almost 0. I am still holding out hope that it will get better. Hang in there. I believe that the benefit is still there even if it isn't felt.

I think some of my problems might be my wife sleeping next to me. She really needs a cpap badly.
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#7
(10-09-2013, 08:24 PM)rwin Wrote: Its been 131 days since I began cpap and I'm still fatigued upon awakening and throughout the day. AHI 1.07 and RERA index 0.39. Leaks are minimal however I find myself waking up 3-4x throughout the night for no apparent reason. Consulted with two sleep doctors who both rely heavily on the numbers and have no additional insight as to why I'm still tired. Was prescribed Provigil and then Nuvigil which neither helped. Full blood workup and vitamin panel including Vitamin D3 were in an appropriate range. No anxiety or depression.

I am running out of patience and options. Will try an oximeter to obtain some oxygen readings. Please help if anyone else has encountered a similar situation. Thanks! Richard

A mistake that I make is when I wake up, no matter what the reason is, sometimes I get up and get on my laptop. Now, I am training myself to keep my fanny in bed when I wake up (I am not waking up to go to the facility). Sometimes, I suspect that I wake up because my pressure went to the higher range b/c of an event, sometimes I wake up because of a leak but most the time it is b/c of my darn mask and the darn Velcro that will come undone (again, I think that might happen b/c I needed a higher pressure and the jump wasn't from 12 to 14 but maybe from 12 to 18....I am guessing that this could be part of the problem). Either way, most of the time when I wake up now that I am using the auto set, it is because of the Velcro on the headgear. I fix the issue and go back to sleep or I will read a page or two in a book and fall asleep. Boring books helps with that lol

Just a thought but I would say when you wake up, if you don't know why you woke up, try to go back to sleep. And I am sure you know this but don't exercise or drink caffeine close to bed time. Hope you get this figured out.

I commend you for asking questions here and for sticking with it!!
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#8
I have the same problem. I wake up multiple times through the night. I can tell you that from what research I've done on sleep, this can compromise the quality of your sleep as much as sleep apnea can. How many hours do you sleep per night? Just curious. I sleep about 10 hours. Obviously sleeping this much isn't ideal, but at least I don't have daytime sleepiness. The other way is to stop waking up, of course easier said than done if you don't know the cause.
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#9
(10-09-2013, 08:24 PM)rwin Wrote: Please help if anyone else has encountered a similar situation.
Hi rwin
I,m having something similar but I,m not sleepy or tired during the day, I do manage to go back to sleep
Checking the software, I've noticed an apnea flagged just prior of waking up and pressure was barley above the minimum pressure ... maybe I need to increase the minimum closer to 95% pressure but have not tried yet
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#10
Hi rwin,
WELCOME! to the forum.!
I know it's frustrating, but just stick with it, CPAP can take a long time to get used to, just keep trying.
trish6hundred
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