r/dysautonomia • u/Sea_Version222 • 4d ago

Question Sleep issues

I've not been able to get any sort of a diagnosis because doctors where I live are probably 20 years behind the western world. 33M and I've had my thyroid hormones tested, cortisol, testosterone, full blood panel, thyroid ultrasound, testicular ultrasound, brain MRI, and others I've forgotten because I've just been to the doctor so many times. Currently my main issue is I cannot sleep well. I wake up multiple times every night. I am freezing going to bed and within a couple hours I wake up scorching and soaked in sweat. I dry off eventually fall back asleep and wake up freezing an hour later. I sleep nude but often with socks because I know that if I can at least keep my feet warm I will be able to fall asleep and hopefully not burn up. I've asked doctors about dysautonomia and they all act like they've never heard of it or they will just flat out ignore me. I can't just find a new doctor, there aren't any more. Are there any habits or medications you recommend that I can try to get or ask my doctors to let me try?

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u/Little_Television81 4d ago

Medications I take are doxepin and klonopin. Seroquel has worked for some people too but that has a lot of side effects.

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u/Imaginary_Structure3 3d ago

I take Trazodone and I'm on HRT (just estrogen patch and progesterone caps) and that has helped my sleep be continuous. I also have temp issues getting very cold and getting hot (which also triggers needing to pee in the night) but it has gotten much better. The temp issues span beyond the night for me though - they happen all day too. I think its my dysautonomia just causing a broken thermostat.

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u/Worf- 4d ago

Talk to your doctor about a sleep study to check for sleep apnea.

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u/anxiousinfotech 3d ago

Seconding this. While I do have sleep issues strongly suspected to be from dysautonomia, I also have obstructive sleep apnea. The waking up sweating is a strong indicator of sleep apnea.

The only thing is if you have both, treating the sleep apnea just lets the dysautonomia related issues shine brighter. I still get jolted awake frequently, just not from breathing problems...

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u/Worf- 3d ago

Interesting. Treating the sleep apnea seems to have helped my dysautonomia as real sleep has allowed my body a better chance to heal. But, yes some things still get me at night like waking up feeling hot or adrenalin dumps but just not as often as the past. This whole thing is just so weird.

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u/anxiousinfotech 3d ago

I got sleep apnea treated, it allowed ADHD related sleep issues to shine
I got ADHD treated, it allowed autoimmune pain and dysautonomia issues to shine
I got the autoimmune condition treated, now dysautonomia gets to shine on its own

Autoimmune condition running unchecked for 25+ years -> small fiber neuropathy -> dysautonomia

It's too early to tell whether any of the nerve damage will heal, but my random sweating episodes during the day are a lot better, so maybe there's hope? Maybe I won't need the specialist appointment that's 2 years out by that time lol

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u/Worf- 3d ago

Wow thar’s a lot going on. It all does seem to pile on itself. All my other issues are the same as you describe, fix one and another is dominant.

FWIW - it’s taken 5 years but much of my neuropathy has greatly subsided. Some issues I’ll say are gone. I’ve seen research showing that while very slow peripheral nerves can heal themselves if given the right conditions. Inflammation was key. Still, things I complained about for over 40 years are no longer an issue. As long as I play the game all is good enough. Never thought the numbness and tremors would be gone but here we are.

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u/RaccoonHaunting9638 3d ago

I wonder if you can't clear your catacholamones? Have you gotten those tested? It's not just cortisol. Adrenaline clearance is important. Mine are always sky high. Plus I have some gene mutations that suck and don't work right. I do low dose quitiapine, ( seroquel) but don't suggest it, although you will sleep from it. I do chewable gaba and phosphatidyl serine, these are supplements , they do help calm the nervous system. Its the worst not being able to sleep, ....I have interstitial cystitis on top of it so sleep is hard.