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Small Fiber Neuropathy

Neuropathy | Last Active: Aug 30, 2023 | Replies (105)

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@teetee7

Hello @wolf bauer. Yes, I am having a terrible time with the exact same sweating attacks, feeling like I have been in a sauna and then weird chills. I was diagnosed in 2015 with severe SFN (firm diagnosis via punch biopsies) and then diagnosed with Autonomic Neuropathy/Dysfunction in 2018. I have been battling syncope for over a year and have fallen to the ground three times (I also have a bad back - broke my thoracic spine in 7 places due to an 8 foot fall. I have hardware fusions, but T5 -T8 compression fractures are inoperable due to being too high risk). I have been taking clonidine 0.1mg tablets, twice a day, to help with the sweating. Sometimes it works well, other times it doesn't. I am going to ask my Neurologist at my next appointment if there is something else I can take for these awful, daily, sweating attacks followed by chills. I was prescribed the clonidine in 2015, after my severe SFN was diagnosed. I am terribly sorry to hear all that you battle with. I certainly can relate and I am hopeful there is something that may help us. Thank you for sharing.

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Replies to "Hello @wolf bauer. Yes, I am having a terrible time with the exact same sweating attacks,..."

@teetee7 , I'm sorry to hear you're having a terrible time with it too! I absolutely hate the heat/summer/fevers, so when this started happening it really bothered me. I had just gotten over the flu so I thought I was having a fever until my thermometer kept reading normal, and it continued happening. I got officially diagnosed with SFN last year too, and had no idea about having autonomic neuropathy/dysfunction (I'll abbreviate it AN/D) until my local hospital called me to set up 16 physical therapy appointments, and finally asked them who prescribed it and why, haha. It's only really been since November that I've been experiencing more and more autonomic symptoms. I fell down the stairs at the end of November (from a combo of AN/D and SNF symptoms), and in December, I was turning my bedroom doorknob to leave the room, and then all I remember is waking up on the floor (I'm really lucky I didn't hit my head on anything as there's a lot of hard furniture and stuff packed into my room except for the exact spot where my passed out body landed). I feel bad for you and your back; was your 8 foot fall and broken spine from a syncopal episode, or did it happen before your SFN? I do have to say, my last college pharmacy class was in 2011 so when you said you were prescribed clonidine for it, I celebrated in my head (for the past 2 years I've had pretty bad anomic aphasia [word recall], so actually remembering an off-label, non-FDA approved usage of a medicine made me happy that I'm not losing my memory too haha). I'm just remembering, I actually stopped sweating for several months leading up to my first hot flash/chill/sweating attack (good think air conditioners exist). I also never thought about the hair loss until reading your other post. I've always had thick hair on my head, medium hairy arms, a little on my abs, and quite hairy legs. My head hair (sounds weird to say it that way) thinned out quite noticeably, but for now, I believe it was from stress/malabsorption/vitamin deficiencies as it grew back in thick again, and now that I'm stressed and vitamin deficient, it's thinning again. I forgot that I was also finding short arm and leg hairs all over my sheets (I still have hair on both, but it was definitely falling out). I've been doing research tonight with the online pharmacy reference resources from my college... does this site have private messaging? I can't post links, and I can send you what I've found. I also wanted to ask you about the nasal ketamine spray and give you info about the infusions as an infusion is WAYYYY DIFFERENT than taking it orally. Also, I've only seen the nasal spray supplied as esketamine, the S (left optical isomer) and wondered if we compared experiences, we would notice a difference between the nasal and oral racemic mixture. And to address the nerve blocks, I've only had a couple, and it was to rule out T7 and T9 and other possible causes of the pain I believe is being caused by the schwannoma on T8 in my back. It's shielded by my rib, and surgically un-resectable, but the neurosurgeon offered a plan of radiation, or actually severing the nerve if it's at fault. One last SNF question for you (especially since you've used ketamine and at first I thought that was causing it)... have you experienced intense pain where the gallbladder is located? I've had numerous ultrasounds and a HIDA scan, and my gallbladder is fine, but I have literally passed out from the episodes. It's without a doubt the most severe pain I have ever felt; what I imagine getting shot in the gut feels like (it could be the schwannoma, side effect of ketamine, SNF, or something entirely else... no one can figure out what causes it and nothing has any effect on it. I've been given IV fentanyl and I was still in excruciating pain.