Caught in a negative sleep loop

It’s no secret that I have sleep issues. I’ve had sleep issues for as long as I can remember. My mother says that as a toddler, I didn’t nap. I remember pretending to nap in preschool so the teachers wouldn’t get mad at me for being awake. I would lay there quietly, feeling restless and bored. Things didn’t get better as I got older. My point is, sleep problems aren’t new to me. But they’re still a pain in the ass.

I got diagnosed with a form of sleep apnea earlier this year. Using a cpap machine has made a huge difference. Or at least, it 2014-04-23 11.03.16did. My problem is that the mask needs to be replaced every 3 months, and I noticed a huge difference in my sleep about 2 weeks before that 3 month time was up. But when I reached the 3-week point, I had some insurance issues, so the company wouldn’t give me a new mask. I get it from their point of view – they had no one to bill but me, and I wasn’t jumping to pay $400. Still, this was a real problem. I waited anxiously for Medicare to come through, or for Medicaid to be more solid, or something. Then, finally, I got the insurance issues temporarily settled and I got my new mask a few days ago. Relief was in sight!

But it didn’t work. It got worse. Sleeping with the cpap right now is only marginally better than sleeping with out it, and sometimes it’s worse. My adrenal insomnia has returned. When it started last year, I had no idea what was happening. I’d be sleeping normally, then wake up around 3 or 4am, and it would take 1-2 hours to get back to sleep. I finally found other people mentioning it in some of the thyroid and adrenal online groups. It has to do with a change in cortisol levels around that time. It was making all of my sleep and energy problems worse. It didn’t happen every night, but I didn’t know which would be the nights it would hit me. I was so glad when they disappeared completely with the arrival of the CPAP machine. I was sleeping through the night again!

And now it’s back.

Twice in the last three nights I had that adrenal insomnia. Twice I found myself awake at 4am. Twice I have woken up feeling like a zombie. And the night in between I slept straight through for 10.5 hours and woke up feeling unrested. Not exactly an improvement.

I would love to go to a picnic this afternoon, but I wonder if I should just stay home and rest. Some friends invited me to watch an outdoor movie with them, but I’m thinking I might be better off having a quiet night at home. Then again, since I seem to be caught in this miserable loop, maybe I should just go out anyway, because chances are, no matter what I do, I won’t be sleeping well tonight.

[Note: I have messages waiting for both the CPAP supplier and my sleep doctor, so I’m hoping that one or both of them can help me figure out what’s going on. But today is Sunday, so I won’t be seeing any improvement tonight, unfortunately.]

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9 Responses to Caught in a negative sleep loop

  1. Julie Ryan says:

    Geesh girl. I hope they get this straightened out for you soon. Sleep is a big issue for me, too. However, they never found any form of sleep apnea, so Ambien continues to be the only thing that helps. I hope they get your mask issue sorted out soon so you can get some sleep again.

    As for the loop and skipping out of fun things. Pick one that would require the least stress and go. You’re going to be tired anyway, you may as well be tired having fun.

  2. Lorna says:

    Sorry you having sleep problems again. An old saying over here is that people wake up at three o’clock because it is the witching hour. Your explanation is more plausible. I didn’t know about adrenal insomnia, so have googled it.
    Hope someone has some answers tomorrow.
    Hugs xx

    • chronicrants says:

      Thanks Lorna. I know there was a time in England (and maybe other areas?) where people would go to bed when it got dark, then wake up in the middle of the night and socialize for a couple of hours, then to back to sleep for their “second sleep.” Maybe they all had adrenal issues, too!

  3. Do hope this can be resolved for you, and quickly. I and quite a few of my friends have sleep issues for a variety of reasons. In my case I up several times a night between ostomy worries and bladder issues. Add in heavy medication for my muscle spasms and I never, ever feel rested. I’m often hit by wave upon wave of fatigue during the day, which friends can struggle to cope with, and I’ve been known to collapse on them. Hopefully one day I will find some sort of solution. Hope you do too!

  4. […] mentioned the other day that I’ve been having some sleep issues. And I’m certain the problem is my CPAP […]

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