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Neuropathy | Last Active: Nov 22 5:50am | Replies (106)

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@wolfbauer

@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.

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Replies to "@teetee7 , I'm sorry to hear you're having a terrible time with it too! I absolutely..."

Hi @wolfbauer . Thank you for your detailed reply! I really appreciate all that you share. I don't know about private messaging on here and I forgot to check before writing back to you. I apologize for that. I am very interested in reading any links you have and learning about your Ketamine infusions. I am so sorry to hear about your recent falls and all that you have going on with your back. You certainly do not need any further injuries. It is the strangest feeling to wake up on the floor and trying to recall what happened to get you on the floor. When you had your car accident, did you have any head injuries? I believe the sudden and hard impact to your body was trauma enough, to cause future problems with your Autonomic system. This is purely my opinion only - based on what has happened with me and speaking with others who have had traumatic injuries. The traumatic fall I took in 2008, was an accident. I fell from a playhouse structure onto the hard earth. My husband had to resuscitate me three times before the paramedics arrived. Thank God he knew not to move me (he was going to be an MD and worked in a hospital for over 5 years during his college days). I did suffer a TBI which resolved itself while I was in the hospital. I can relate to your anomic aphasia! I am thankful for brain teasers online, ha! I am happy that your recollection was spot-on with the clonidine - it is great when that happens. Regarding the hair loss, I have also attributed it to possible hormone imbalance and/or vitamin deficiency and absorption. When my Neurologist ordered very specific bloodwork and urine samples from the Rochester Mayo Clinic, all of my attributions were put to rest. No problems in those areas. It is good to know you will be having bloodwork soon. It's important to keep up with regular bloodwork. How awful about the gallbladder area pain you experience! That is one area that has not bothered me (knock on wood). I have been diagnosed with costochondritis (2009 by a cardiologist - no heart problems) and do have very painful bouts of sternum area pain attacks that travel around to my upper thoracic area. How often do you get pain in that area and what do you do/take to help you through an "attack"? If IV fentanyl doesn't touch it, the only thing that pops into my head would be to request sedation. So sorry and can't help wonder what that pain is from.