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General Discussion on any topic relating to CPAP and/or Sleep Apnea.
drfaust
 
Posts: 33
Joined: Sat Feb 25, 2017 9:09 pm
Gender: Male

Re: Three months in and I still feel like absolute crap

Postby drfaust on Thu May 18, 2017 11:38 am

It's been a while, so I thought I'd post an update. To reply to HannaJ, yes, I've been checked for REM behavior disorder and the diagnosis was negative. I don't act out my dreams. I just have really horrible nightmares that wake me up multiple times per night.

Several people suggested that maybe it was the psych meds that were causing issues, so I talked to my psychiatrist and we agreed to a trial of reducing dosages to levels they were at before CPAP, when I was chronically fatigued, but at least functional. I'm now back to the dosages I was on for years when I was functional, but nothing has changed (or things have gotten worse, since the klonopin at least sedated me more so I could sleep a little better).

I still feel absolutely horrible -- some days I'm so fatigued I can't even leave the house, or getting up from bed and going to the bathroom leaves me tired and in need of rest. I feel chronically sleep deprived from fighting with the CPAP all night. I have mental fog, confusion, and I'm falling very far behind in my career because I can't work more than 1-2 hours on a good day (which isn't every day).

My doctor prescribed provigil, but that didn't do much more than give me insomnia and sleep paralysis, so I've stopped taking that.

My AHI and RERA reports are basically completely clean -- I have almost no events, so my sleep doctor is satisfied that I'm being adequately treated for my SDB (it turns out that in my initial study I only had like 2 true apneas, the bulk of events were RERAs). I don't have RLS, PLMD, or any of the other 'normal' sleep disorders.

I was so hopeful that I was going to feel better with CPAP, and after reading this board and other apnea message boards I was prepared for a few months of transition time. But I wasn't expecting a downward spiral into being nearly incapacitated from sleep deprivation caused by my CPAP. I was a poor/light sleeper before, so CPAP seems to disrupt my sleep to the point that I'm bed-bound on about 30% of days now.

drfaust
 
Posts: 33
Joined: Sat Feb 25, 2017 9:09 pm
Gender: Male

Re: Three months in and I still feel like absolute crap

Postby drfaust on Thu May 18, 2017 12:04 pm

Also, some people mentioned that another sleep study may be in order. I agree it would be nice to know what's going on.

But in my first two studies (diagnostic and titration), I couldn't sleep for more than 3.5 hours either time. I'd fall asleep just fine, but then wake up after reaching N3 sleep once, and then never be able to get back to sleep. Then I'd just lay there until 5am, when the tech would send me home. It was very difficult to sleep when tangled up in wires and on an uncomfortable pillow, mattress that was too soft, etc.

I think I have some kind of hypervigilant autonomic nervous system that most of you don't suffer from that keeps me from getting rest in situations that aren't 100% ideal -- I have a strong fight or flight response, even during sleep. For example, I can't even sleep with sheets tucked in. I MUST have my feet sticking out the bottom, or I wake up kicking and flailing because I feel like I'm trapped.

Also, some people asked about sleep hygiene. That was one of the first things I worked on, years ago. I'm fastidious about no screens after 8pm, I spend 10min doing meditation/relaxation mid-day and another 15min before bed. The only exception to sleep hygiene rules that I make is on those days that I physically can't get out of bed or be woken when my alarm goes off -- the days that I get the extra 4 hours of no-CPAP sleep and feel better.

Someone else asked about melatonin. I've stopped using that for 3 weeks now -- no difference in daytime sleepiness. Just a harder time falling asleep.

drfaust
 
Posts: 33
Joined: Sat Feb 25, 2017 9:09 pm
Gender: Male

Re: Three months in and I still feel like absolute crap

Postby drfaust on Thu May 18, 2017 12:08 pm

Oh.. AND... I've worked with my doctors to rule out hormone deficiencies/imbalances (thyroid, testosterone), iron deficiencies, vitamin D issues, and other endocrine problems that could cause excessive fatigue. All of those tests are normal.

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DerwentDiva
 
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Joined: Thu Jun 01, 2017 11:32 pm
Location: Oz
Gender: Female

Re: Three months in and I still feel like absolute crap

Postby DerwentDiva on Wed Aug 16, 2017 9:02 pm

Hi Dr Faust and others.
My AHI at the sleep study was 68 so I know I really need therapy. Also been fighting the CPAP for three months, various masks and sizes and settings and prescribed Valium to help me drop off. All failures - depending on the type of mask it is between 10 minutes and 4 hours before that claustrophobic panicking feeling - like a tarantula is on my face. I do feel better and less sleepy at work even with the various issues impacting on compliance.
I have today been measured for a mandibular splint which I will pick up on Monday. I have been renting a machine so am glad about that.
I suppose this is just another slippery slope with trying to get used to something in my mouth instead of hugging my face, I am expecting the increased saliva and sore teeth while getting used to the apparatus. Plus you don't have the daily data to track how your treatment is going. My sleep specialist wants me to do another clinic study in December with the splint in place to see what relief I am getting.
Has anyone else been down this track and can share their experiences?

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kteague
 
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Location: West and Midwest
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Re: Three months in and I still feel like absolute crap

Postby kteague on Thu Aug 17, 2017 12:01 am

drfaust wrote:Also, some people mentioned that another sleep study may be in order. I agree it would be nice to know what's going on. But in my first two studies (diagnostic and titration), I couldn't sleep for more than 3.5 hours either time. I'd fall asleep just fine, but then wake up after reaching N3 sleep once, and then never be able to get back to sleep. Then I'd just lay there until 5am, when the tech would send me home. It was very difficult to sleep when tangled up in wires and on an uncomfortable pillow, mattress that was too soft, etc. I think I have some kind of hypervigilant autonomic nervous system that most of you don't suffer from that keeps me from getting rest in situations that aren't 100% ideal -- I have a strong fight or flight response, even during sleep.

Your situation sounds beyond frustrating. Having a nervous system that is hypersensitive certainly adds an element to CPAP treatment that most don't have to deal with. Especially since you don't get much sleep, making the best of the few hours sleep you do get is important. If you have CPAP settings that have been proven through machine data to be effective in treating your OSA, then it seems only logical to me that your next study would be performed while using the CPAP at your effective pressure the entire time (unless they see a need to increase the pressure). Otherwise you are not duplicating what happens at home - the situation that needs identified and treated. Good luck with everything.

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