Anyone with more than Sleep Apnea affecting sleep/energy?

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SleepyMommy703 +1 point · 10 months ago

I've been back on my CPAP now for about 3 months. I head back to my sleep doctor in a couple weeks, but overall I still feel pretty awful. I use the machine most nights, occasionally I'm so tired I just pass out before I even get ready for bed and those nights I end up not using the CPAP. But when I use it I generally have it on for a minimum 7 hours sometimes up to 9+ hours and my AHI has never been more than 1 and occasionally even 0. I seem to have found a few tricks to keep leakage at a minimum, but still have a few off days now and then.

For the most part though I still feel like crap. The one thing I noticed when I used the CPAP a few years ago, and again now, is that I do have far fewer headaches. And I think for the most part my mental clarity is better than it was. I was having a lot of memory issues for a while and would have to really pause to even remember silly stuff like the word for plate or cup. It still happens now but to a much lesser degree than it was.

But I'm still quite tired and feel the urge to nap most days. I usually push through until the end of the week and by Thurs and Friday I crash after work. I may be slightly more active than I was but still have plenty of days I really would just prefer to sleep the entire day. Mornings still suck. I wake up feeling more exhausted than I go to bed most of the time. I push through and get going but sometimes as little as 2 hours later I'm yawning uncontrollably with my eyes tearing up I'm so tired.

I wake up a lot at night still. Most of the time it's a brief waking and I go right back to sleep within a minute or so. But about once a week (it was up to 3 nights a week at the start of the summer) I wake up and am awake for 2-3 hours in the middle of the night. If I get out of bed at all, whether to go to the bathroom or because one of my kids was up and needed me, I can't fall asleep again even though I feel exhausted and may have only been up for a minute or two. Occasionally, I worry about stuff but that's usually not until after I've lain awake for some time. The days after this happen are the worst. Even if i slept 4-5 hours, was up for 2 hours and then sleep for another 4 and get a total of 8-9 hours sleep that middle of the night disruption wrecks me and it takes days to feel improvement again.

I did a daytime test with my sleep study some 10 years ago and was diagnosed with hypersomnolence (sp?) because I was able to fall asleep all 5 times they had me try. But while they suspected narcolepsy I never hit REM so that was ruled out.

I really hoped that a CPAP was going to be the answer but considering I had mild-moderate sleep apnea I guess I shouldn't be surprised. The sleep doctors have suggested a few things like perhaps my brain has difficulty cycling between wake and sleep mode getting me stuck in sleep mode to a potential to still have a form of narcolepsy. Most recently it was suggested that there are some people who actually do require 12 hours of sleep a night and that I may be one of those people. Last resort they want to give me a medication like Provigil to help me be more awake and alert during the day.

It sounds very likely that they are going to order another study for me. I'd like to be hopeful it will show them something, but I don't know why it would show something now it didn't before. I do have a lifelong history of anxiety and depression, but even when those things don't feel like they are an issue I'm still not sleeping well and feeling tired all day.

I'm just wondering if there are others out there who seemingly treated the sleep apnea successfully but without significant improvement in how they felt and if they were able to figure out a cause or cure for their sleep issues and fatigue.

Sorry for the long post but thanks for reading and any input/advice.

Heather

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wiredgeorge +0 points · 10 months ago Sleep Enthusiast

Heather, it does seem some issue or issues are going on in addition to your OSA. Therapy seems to be reducing AHI but if you are still overly tired then I think your should first go to your primary care doc and get a full physical. The symptoms you describe could be different things and it sounds like you need some relief from this over-tired direction. If you describe your symptoms to a PCP ask them to do a full blood panel as well as you may have things going on this type panel would give clues to. Best of luck!

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snuffie3456 +0 points · 10 months ago

I'm sorry Heather-This is so hard when your sleeplessness affects so many people in the house. I have no feedback other than sympathy, but I agree with WiredGeorge. I'd have a blood panel done, maybe get a variety of opinions from other practitioners. Stick with it-you'll find a way through.

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SleepyMommy703 +0 points · 10 months ago

Thanks for the replies and words of encouragement. As this has been a lifelong issue I have been to my primary doctor before. That's where I started before my sleep study about 10 years ago. Every few years they run bloodwork checking things like blood sugar, iron levels and thyroid. They always come back normal. And 2 years ago I had an extensive workup after having had a TIA. They ordered lots of bloodwork, MRIs, echocardiogram, etc. Nothing came from that either. I've changed my diet with no results and at various points I had a good exercise regiment going but still no improvement.

I got an appointment to see my sleep doctor in a couple days so I'll see what she says. I also have an appointment soon to see a psychiatrist to discuss possibly going on SSRIs for ongoing anxiety and occasional depression. It feels far more physical than mental but both issues seem to be feeding into one another at this point so it's hard to tell anymore. I just really wish there was an easy definitive answer and fix.

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Felicity63 +0 points · 10 months ago

I am a Type I diabetic, hypothyroid, low vitamin D, iron-defficient anemic...so yeah, there are several things conspiring to make me very tired. :) I am hoping my new AutoPap will help!

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UnassumingPinkGull4524 +0 points · 10 months ago

Sleepmommy, I used to have similar issues as you, I would sleep all day and still feel extremely sleepy. I couldn't walk, If I tried, my brain would hurt. My body and brain are now back normal. These are few things I did to get me back to normal. I stopped eating salty meals (no salt). I stopped eating sugary stuff (no sugar). I stopped eating greasy meals laden with oil ( if you can see the oil it's too much). I stopped eating foods that cause gas in my stomach ( pizza, breads with gluten) too much gas bubbling in the stomach prevents air you breath or air from the CPAP machine from going into your lungs. If you eat beans or green vegetables take BEANO pills before you eat. However. BEANO does not help with GLUTEN based foods. I stopped drinking alcohol (after a certain age the brain does not want to deal with alcohol). I removed myself from situations that cause me to be depressed and when I get depressed about something, I read "bible verses about depression" to help me out of the funk (this works in 10 mins). You can find the bible verses about depression on the internet. Right now I'm doing well and back to work, I drive large commercial vehicles. If you try this you will see improvements in about a couple of weeks. Good luck.

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ForcefulTanSheep1370 +0 points · 10 months ago

Yes and as the day wears on it gets worse. Initially, in AM it is fine until about noon (the worst part of the day is 3-4PM. I feel as though I have been heavily sedated. Initially, the study showed 58 events per hour and now it is .4 so I would think my fatigue would be much better. My reports from ResMed at MyAir have been excellent so am disappointed things are not much better BUT I discussed this with my naturopath who was the reason for my having had the sleep study and he said it can take weeks for you to feel better given how long I have had apnea

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OptimisticLimeFlamingo6906 +0 points · 10 months ago

I doubt that it will take weeks to get better. There are other reasons that you may feel sleepy. There’s Narcolepsy or Idiopathic Hypersomnia among others. You would need an MSLT which is done after your overnight sleep study. You can find more information regarding sleep issues at http://www.hypersomniafoundation.org/.

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