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Can’t regulate body temperature.

Autoimmune Diseases | Last Active: 31 minutes ago | Replies (13)

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@jmhilde61

I have sarcoidosis and have suffered from around-the-clock hot flashes, night sweats, episodes of freezing, lack of thermoregulation for going on 20 years. Ambient temperature and environment make no difference. I suffered serious sleep deprivation (to the point of suicidal thoughts) due to being constantly woken up by night sweats. I'm certain I have small fiber neuropathy (although the one biopsy I had five years ago was "borderline") as well as chronic inflammation, both of which affect my hypothalamus and autonomic functioning. Peri-menopause was suspected when this all first started (I was in my mid 40s ) so I tried every hormone therapy out there but nothing worked. Finally, a new OB/GYN nurse practitioner told me about Gabapentin. "It's been used for thermoregulation for at least 30 years," she said. No one had ever suggested this before, which was mind-boggling. Sure enough, 100mg in the morning and 200mg before bed (a tiny dose) keeps the sweating/freezing cycle mostly at bay with no side effects that I've noticed.

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Replies to "I have sarcoidosis and have suffered from around-the-clock hot flashes, night sweats, episodes of freezing, lack..."

How wonderful you finally have a med that actually helps!
And from a nurse practitioner! I bet the folks writing on this post will we excited to give it a try. Happy Holidays!

Oh that’s fantastic that you finally found something that works! Wow…at last!
I’m taking pregablin for pain relief as I have fibromyalgia but I’ve also got pots syndrome and I can nevvver evvver regulate my body temperature, exactly the same as you so I might mention this to my doctors and ask them to swap me..win win as it’s a pain relief as well as sorting the temperature out thank you 🙏 so so grateful as I suffer badly too!