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No Relief With CPAP Usage, Low AHI
#1
Hello all,
I've run into the worst problem: no relief despite treatment. I was diagnosed with OSA following a sleep study/polysomnography. I had 19 events per hour, so moderate sleep apnea I guess? Naturally, I sleep between 12-16 hours per day, more if I am depressed (I have bipolar disorder.) This severely impacts my functioning to the point where I need Ritalin to do even basic tasks.

With CPAP treatment (almost a year of compliant, 7+ hours per night use), I have an easier time waking up in the morning but otherwise sleep almost the same amount. My AHI is down to 1.5 if my machine is to be believed. I still wake up frequently during my sleep, sometimes long enough to remember. A couple times a week, I'll wake up in a weird drunken, dreamlike state (I have memories from these episodes so I don't think it's sleep walking) and get up to eat or drink something, say random things to people around, and go back to bed (even considerately stopping to put my mask back on). I wonder if these awakenings are what's preventing me from feeling relief?

Does anyone have any suggestions as to what may be going on here? I am a mouth breather using a nasal mask - maybe that has an effect? When I had my first titration, I remember sleeping only four hours or so but feeling more awake than I ever had the next day. Perhaps that was a temporary mania induced from not sleeping well (it happens, being bipolar is crazy like that), but it makes me wonder.

It's critical that I fix these fatigue issues as I am struggling to function with basic tasks at the moment. I'm really at the end of my rope here and pretty frustrated with my body. Due to a lack of health insurance, I cannot work with a sleep specialist on this issue.

Other possibly relevant info: Female, 22, 110 pounds, taking Abilify and Ritalin daily. The Abilify is recent and the fatigue precedes the Abilify by years. I have a family history of narcolepsy (great grandpa) and sleep apnea (mother, grandmother).
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#2
It may be that you are simply used to sleeping 12-16 hours per day, and CPAP treatment might not change that. Have you tried simply forcing yourself to get up after a "reasonable" period of sleep? Going to bed and getting up at the same time every night is part of "sleep hygene", which is getting your body into a fixed and healthy sleeping rhythm.

Waking up multiple times in the evening is actually normal and part of your sleep cycle. Typically, one just falls back asleep again, and not remember in the morning. Sleep apnea will increase nocturia (night-time urination), and getting up will mean that you do remember it.

Your "waking" into a weird drunken dreamlike state might simply be N1 sleep. When most people go into N1 sleep and back awake again, they firmly believe they didn't sleep at all. It's also possible that it has something to do with your medications. You might want to discuss this with your doctor.

When I first started CPAP therapy, my energy level skyrocketed. Since then, my body has become used to the "new normal", and I don't have the uber-energy feeling anymore. The big difference for me is that I used to regularly fall asleep at my desk in the afternoons. Now, that would be completely unheard-of.

Unfortunately, it sounds to me as if you are going to have to discuss these issues with a medical professional. Have you tried talking to your primary care physician?
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#3
(03-31-2014, 06:47 PM)RonWessels Wrote: It may be that you are simply used to sleeping 12-16 hours per day, and CPAP treatment might not change that. Have you tried simply forcing yourself to get up after a "reasonable" period of sleep? Going to bed and getting up at the same time every night is part of "sleep hygene", which is getting your body into a fixed and healthy sleeping rhythm.

Waking up multiple times in the evening is actually normal and part of your sleep cycle. Typically, one just falls back asleep again, and not remember in the morning. Sleep apnea will increase nocturia (night-time urination), and getting up will mean that you do remember it.

Your "waking" into a weird drunken dreamlike state might simply be N1 sleep. When most people go into N1 sleep and back awake again, they firmly believe they didn't sleep at all. It's also possible that it has something to do with your medications. You might want to discuss this with your doctor.

When I first started CPAP therapy, my energy level skyrocketed. Since then, my body has become used to the "new normal", and I don't have the uber-energy feeling anymore. The big difference for me is that I used to regularly fall asleep at my desk in the afternoons. Now, that would be completely unheard-of.

Unfortunately, it sounds to me as if you are going to have to discuss these issues with a medical professional. Have you tried talking to your primary care physician?

Thank you for the thoughtful response! I haven't talked to my primary care doc about it - do you think it would do any good? I was under the impression that primary doctors aren't really good at treating sleep issues.

My sleep hygiene is okay in some respects (I go to bed at 11-12 every night, awaken at 8) and I do force myself to stay awake during the week. I take Ritalin during the weekdays so I actually sleep something closer to ten hours with it. Without it though, I fall asleep whether I want to or not. I've fallen asleep in the middle of conversations with people or while standing, attending to a cash register. I should probably not use my laptop in the same room as my bed however.
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#4
Hi Neonics,
WELCOME! to the forum.!
You might want to mention the problems you are having to your Regular Dr.
Hang in there for more suggestions and best of luck to you.
trish6hundred
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#5
Your primary care doctor certainly has a better idea of potential effects of your medication and their interaction with your sleep than I do. Think about it - what could it hurt to discuss it with him/her?

It does seem like you are trying to have a good sleep hygiene regime. I also have a laptop at my bedside, and I often surf the web before going to sleep. However, once it is time to sleep, the laptop gets put away, the mask gets put on, and the lights get turned off. And it's only very exceptional circumstances that would have me turning the laptop back on again before it was time to get up.

Sadly, my experience is limited to Sleep Apnea and associated issues. It seems like your Sleep Apnea is being effectively treated, but other issues are causing your fatigue issues. I know you can't afford to consult with a sleep specialist, but perhaps your primary care physician can hook you up with a take-home do-it-yourself sleep study system? I don't know if any take-home systems include EEG's, which is what it sounds like you will need, but hopefully your doctor would know. You could at least discuss options with him/her.
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#6
(03-31-2014, 06:17 PM)Neonics Wrote: Other possibly relevant info: Female, 22, 110 pounds, taking Abilify and Ritalin daily. The Abilify is recent and the fatigue precedes the Abilify by years. I have a family history of narcolepsy (great grandpa) and sleep apnea (mother, grandmother).

Neonics, the meds could be making your sleep apnea worse, I would not only speak to your primary care doctor but also your sleep specialist.
The narcolepsy in your family would also be worth looking into, my sister has both narcolepsy and sleep apnea but wasn't diagnosed at the first sleep study with both.
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#7
Unfortunately Tez62, you might have missed this tidbit in the original post:

(03-31-2014, 06:17 PM)Neonics Wrote: Due to a lack of health insurance, I cannot work with a sleep specialist on this issue.

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#8
Neonics,

You say that you are a mouth breather using a nasal mask and that your titration made you feel good when you got up. It sounds to me like you may be having a lot of mouth leakage. What are your leakage numbers? If you are having a lot of leakage, it can adversely affect your treatment and make your AHI look better than it really is due to the machine having difficulty sensing the apnea with all the leakage. Let us know what your leakage numbers are.

PaytonA
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#9
(04-01-2014, 10:47 AM)PaytonA Wrote: Neonics,

You say that you are a mouth breather using a nasal mask and that your titration made you feel good when you got up. It sounds to me like you may be having a lot of mouth leakage. What are your leakage numbers? If you are having a lot of leakage, it can adversely affect your treatment and make your AHI look better than it really is due to the machine having difficulty sensing the apnea with all the leakage. Let us know what your leakage numbers are.

PaytonA

That's good stuff to know, thanks. I didn't know that. I just pulled the numbers. I'm not sure what they mean - does this make any sense to you?

Average Total Leaks: 22.26
95% Total Leaks: 23.00

Thanks for all of the thoughtful responses so far! I will call my doctor tomorrow and talk to her about it.

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#10
(04-01-2014, 07:04 PM)Neonics Wrote: That's good stuff to know, thanks. I didn't know that. I just pulled the numbers. I'm not sure what they mean - does this make any sense to you?

Average Total Leaks: 22.26
95% Total Leaks: 23.00

Thanks for all of the thoughtful responses so far! I will call my doctor tomorrow and talk to her about it.

Hi Neonics, do you have the data just for "Leaks"?

Edit: I ask because the Respironics machines include the normal mask venting (which are intentional leaks) in the "Total Leaks" calculations. What we need to see is just the "Leaks" (which excludes the mask venting). I think your "Total Leaks" are low enough to not be concerned with them though -- I've heard mentioned on these forums that Respironics Total Leaks < 60 is the target.
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