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  3. Thank you for the all the information. I'm not sure what SFN is but the dermatologist at Mayo diagnosed me with ETR rosacea, spongiatic dermatitis, hyperkeratosis, Scalp pruritis/foliculitis and some disorder with my all my nail beds.
  4. Today has been horrible. I had what I call a flare hyperanadrinic shakes so bad my teeth clattered cold hands feet for ages high blood pressure high heartrate . So cold ice cold dressing gown jumper heated blanket weighted blanket and other still so cold .Then when finally ended hours later go to burning feet face yet still cold with extreme weakness thinking adreline of upping mmy ketotifen for my mast cells was horridous .
  5. Sorry for later reply been very unwell anyways thank you so much all your comments so true everything I read .I really dont no where I be without this site . I have put complaint in we will see what happens from there. The appointment with mast cell doctor was alot more promising she up my meds see if it helps anything.
  6. Yea they already said they would be sending it to the referring physician. I just need to find an autonomic specialist. We're moving partially so I can get actual medical care.
  7. Maybe you could call the department at UAB and ask if they will be sending a report and interpretation of your test to your local neurologist? The interpretation and analysis is almost the most important part of the test in my experience.
  8. Hello @POTSie78 - I had an autonomic reflex test done 10 years ago at Vanderbilt, before my HPOTS diagnosis. The testing came back completely normal, yet I showed positive for NCS at my first TTT done in another facility. A year later I was diagnosed with HPOTS ( confirmed with neurotransmitter levels ). My 2 sisters that also suffer from POTS ( genetic in my family ) have tested normal on autonomic reflex testing as well, however their symptoms are highly suggestive for HPOTS, and they have both dysautonomia - one has HPOTS and one autonomic neuropathy. The reason I am letting you know this is b/c autonomic reflex testing can be normal yet you can still have POTS - as you can see on the testing in my family. I also know of other members on this forum that have been diagnosed with POTS per TTT but had normal autonomic testing. What type of diagnosis? Are you talking SFN?
  9. I have severe Small Fiber Neuropathy, and have had for 17 years. I've had some thudding in my ears on and off, especially when I detoxed off a narcotic in 2014 that lasted for approx 6-7 months and I did not sleep either due to the detox. I had severe tinnitus after coming off the medication, but it disappeared later on. I eventually had to go back on Fentanyl but had not tinnitus again to speak of, just intermittent thudding once in a while. My neurologist told me I had POTS but my main doctor, who knew me extremely well, said I did not have POTS. I do have some autonomic system issues but did not have severe Pulsatile Tinnitus with relentless pounding in my ears till last summer in 2020. Boom...it started all of a sudden and has not stopped. I have barely slept for most of this last year. I just started taking Baclofen, a muscle relaxer that causes me other issues so I don't like to take it, plus I am on Diazepam and my doctor had said the Diazepam was stronger than the MR so I just stuck with the Diazepam that didn't give me problems....but now taking cause it knocks back the tinnitus so I can sleep and function during the day. I really thought I was going to go insane with the severe pounding and my chest felt nervous, not really heart palps, just a nervous feeling. My neck was as tight as piano wire, and in severe pain, which was causing headaches and migraines, and I believe the tinnitus, but not proven. I have been a wreck with the no sleep, the pounding in my ears, headaches/migraines, neck pain, plus I tore my left rotator cuff, it appears, but my new doctor whom I haven't seen wouldn't do an MRI, only an X-ray, finally and that of course showed nothing. Last year was extremely stressful during the pandemic, I kicked the only friend who I had met 10 years ago, to the curb because she was abusive and I couldn't take it anymore with my mom dying of pancreatic cancer. Mom died just as the pandemic was kicking in and I haven't even seen where she is buried. She lived out of town and the few left on my family was vile. It was a horrible experience. I did the best I could but I was left beaten up physically and emotionally and it all didn't hit me till later on while sitting alone in the pandemic 24/7 for 15 months! Yes, it was hard, especially with being an ill person and already suffering depression. I know stress aggravates tinnitus but is not really the cause, though some sites say it can be???? I know that medication can cause tinnitus and I was having to take a lot of extra narcotics to enable me to stand on my feet to help my mother. ?? Could this be the cause later after I cut back to my normal dosage??? I was fine when I got home in February as the tinnitus didn't show up for months later. I lost my main and only good doctor the end of June and this was another big stressor but I also had my first Ketamine infusion the end of June before losing my good doctor. It didn't help my pain as the dosage was extremely low but during the infusion I had blurred VERY blurred vision, enhanced awareness of my spine and hip pain and was uncomfortable and could not stay still in the hospital bed. It was a month before the next infusion and the Ketamine was for the SFN disease and pain. This time was a nightmare and they ramped up the dosage extremely high though a anesthesiologist did not show up to calculate the dosage. A woman came down and I was told that she was a anesthesiologist NP.?? I thought weird as they have to be very careful with the dosage using Ketamine and I am a complex patient with a lot of weird reactions to things and I feel MCV was remiss in handling my care with the Ketamine. I just found out through my neurologist that the pain clinic did not even write down the dosage they gave me. It was way to high as I was literally blind, couldn't swallow a sip of water, was thrashing about in pain, as it heightened my awareness of my spine and hip pain again but to a much higher degree. I was miserable. I had a severe migraine, couldn't tolerate any light, had to cover my face and have the nurses close all the shades completely and turn out the lights. I couldn't feel my feet, felt like I couldn't breathe well, my mouth felt huge and so many other issues were happening. I had bad hallucinations and was crying. This infusion just didn't not go well and in the end made me feel extremely ill. No one checked on me since my good doctor had left MCV so I was on my own afterwards and home. I never went to sleep during either Ketamine infusion, which my podiatrist said should have happened. He sat on clinical trials in the past, I found out, and said I should have been relaxed and in a twilight type stage, and said most people sleep. I did not fall asleep during the Ketamine infusions and did not feel sleepy, peaceful or in twilight at all!! After the Ketamine was stopped and I was home I did fall asleep when I laid across my bed, but then I felt ill when I woke, both times, but after the 2nd infusion I stayed ill and felt extremely weak for weeks. I didn't feel right after the last infusion. This was the end of July and by August I felt manic as could be and my brain and chest felt wide open. I went to the river one day with my walker and saw a friend and I was loud, crying and just kind of crazy when I tried to talk to her. I was not normal at all. My chest and brain still felt wide open! I was manic and talking loud and didn't care who heard me. I just was off the rails. When I got home and took a shower I went down like a ton of bricks had hit me. I was ill, very ill and was having all kinds of issues. I thought maybe I had Covid as food tasted horrid, I wasn't breathing well, etc.....but I was tested and tested negative. I was dehydrated so got fluids and just was not well. It lasted for a few weeks but I never felt good again or back to normal. I hurt my neck during this time while trying to fix my dryer vent hose and my neck because so painful and tight that I could not lay it on my pillow....the pain and tightness has continued to present day, and I had had 4 car accidents/incidents earlier when my mom was dying and I had to drive. The worse was when I got rear-ended the day of her funeral but still I didn't have the tinnitus till after the dryer vent incident and then the Ketamine which all happened around the same time. I thought maybe I had some instability in my cervical as I had already had a fusion, or in my upper spine, that was causing the tinnitus. I didn't know but was miserable. I had told my new doctor but he ignored me. I then tore my rotator cuff and that has been adding to my neck pain. I told my new doctor but again, I was ignored and he didn't even make a clinical note in my file. I told my neurosurgeon and he wanted an MRI ordered by my new doctor wouldn't do it. I eventually saw his NP and was sent to Ortho and an X-ray which didn't show anything as RC tears of the shoulder need to be seen on an MRI. I was living in H___! My neurologist finally wanted to see an MRI of my neck but that was okay but still no one has done an MRI for this intense shoulder pain that presents as a RC tear. It aggravates my neck and my ears go crazy!! My neurologist said the Ketamine leaves your system within a short time after the infusion stops and that is true...but with the bad reactions I had I am going to call the NIH as it could have set something off to cause the tinnitus. I don't know this but gonna cover all bases. I really thought I was going to lose my mind and take my life between the severe tinnitus, no sleep and the pain with the crazy feeling in my chest also and feelin just crazy. I couldn't talk to people or my ears would close up and I felt like I was talking to loud and probably was as I couldn't hear well. I felt crazy and nervous but not like anxiety which my new doctor kept blaming everything on. It was all that was happening that was causing me to have all that anxiety. When I laughed I felt a rippled thru my chest or when I lifted my arm or ate my dinner and then my ears would start. it's been a wild, insane ride. I finally found a combo of meds that worked, just the last week, to knock out the tinnitus, the muscle relaxer, Baclofen, with more pain meds to allow me to sleep at night.......it took a long time to get an MRI to discern there was or was not a problem with my neck, and still my shoulder has not been addressed, the Ketamine blown off as an issue but he doesn't understand how bad that last infusion was....so what started this insane tinnitus? The SFN?? My neck pain, my shoulder causing more pain and making my neck worse? I do not know. Tinnitus can often be medication related and some of my meds could be the cause but have never caused me an issue before!! So, who knows, but I do agree with my my main doctor that left. I don't really have POTS. They need to figure out the tinnitus and the cause and type. Just because I have SFN and they think autonomic disturbances, but can also be due to the meds I am on, at least some of it, does not mean POTS. I do not fit that profile with my problems. My BP is not low. It's been climbing higher and higher since last summer after the Ketamine! Beware of doctors hanging your problems on one thing and not really doing the tests or diagnostics to make sure you have what they are saying you have......do your research. I have been right too many times and the doctors wrong. I live in this body and keep track of what it does. Do the same daily on a simple chart. It helps give your doctors the information they need....if they will listen!! If anyone has anything to offer I would value your input. I do not want to live on more drugs. I am sick of drugs thought don't know how to navigate this horrid SFN disease. It causes me so many problems and when I detoxed, a year later, it was all me and my body...not the detox that was causing my issues. I know this is lengthy and a lot to digest but appreciate anything you might can add to help me, if you know about Ketamine, POTS or SFN that is not diabetic and is severe. Thank you!
  10. For the past year and a half I've been treated for dysautonomia/POTS by my electrophysiologist who diagnosed me after doing a TTT and ruling out other cardiac issues. Recently I went to Mayo and went through several tests. They had me withold my medications for 2 days and did their autonomic reflex screen, exercise tolerance test and some bloodwork. Everything is coming back normal now except I have exaggerated heart rate reaction to exercise, severe dyspnea, my aerobic capacity is below normal and now I have 5 different skin diagnosis?? My paraneoplastic panel and tryptase levels are normal. I was not able to complete the 24 hour bp monitor because of faulty equipment. I am quite confused by these results and still waiting to hear what Mayo says is wrong with me. Has anyone else experienced something like this?
  11. Awesome. I didn't really know to be honest I just did a lot of searching and found out they had a new autonomic testing lab. However the results will go back to my local neurologist and he doesn't know anything about dysautonomia.
  12. Last week
  13. @Nin, I am not a typical case – treatments seem to work for me once (one day), then stop working. Unfortunately, it seems the fludro is following that pattern too, but I'm not giving up yet. My endocrinologist will increase the dose this week if my blood test is okay. On the day it worked, I felt a lot better. Not 100%, but it really took the edge off my fatigue. I also didn't have the afternoon slump I usually get when I get so exhausted that I have to lie down. I was a bit worried I might get bad side effects, so I didn't go out for a walk, but I pottered around the house and garden and did some cooking and vacuuming with no trouble. I wish it had kept working like that, but after the first day I have been up and down a bit. Some days it seems to help a little bit, other days I feel the same as before. I am not typical though, so please don't be discouraged by my experience.
  14. Doesn't feel like that. This more feels like a sunburn on all my muscles. Have never been able to decipher a pattern either. It can come on out of nowhere or it can be lingering all day to the point where I feel it coming. Part of the problem, as I was telling someone yesterday, is that there are no ups. I don't have good days and bad. I can't remember the last day I felt okay and the closest I get (tolerable), I generally ruin it by thinking I can do something. I would LOVE to have good days with my bad. I used to think hot weather was a trigger, but now I'm starting to think it's not any specific type of weather (unless extreme), but rather stark changes in weather.
  15. There are a bunch of different causes for dysautonomia. What's going on in your body would depend your particular cause, which your doctor can best advise. Two other things to remember. Dysautonomia by nature has a lot of ups and downs. If you did the same exact thing every day, you might have some good days and bad days. Unfortunately that's just how it is. It's unpredictable and doesn't always make sense. Dysautonomia patients - no mater what the cause is - tend to all have similar stressors which do make things worse. Examples include exercise, menstrual cycle, hot weather, not drinking enough water, not getting enough sleep, overdoing activity, personal stress, travel, etc.
  16. I haven't had the burning for ages. Realised I was getting this when my body was reacting to something which was toothpaste with sls in it. It wasn't just the burning, it felt like my body was attacking itself. They got no answer for this. It could be something you're coming into contact with
  17. How do you find it helps? Is walking easier? I struggle to walk far, I get so exhausted.
  18. Journal article accompanying the diagram with further explanation: https://www.sciencedirect.com/science/article/pii/S1566070221000588?fbclid=IwAR143FeT7sMs3VVmdMB-RrGwVkX-YIZnqnDaNZqlvpOlJL21SuGoE3mxR_E
  19. Domperidone is for gastroparesis and it helped me tremendously. It isn't FDA approved and needs to be compounded, but it changed everything for me.
  20. Ironic that Dysautonomia International posted this graphic today. But now my question is, which symptoms are each mechanism responsible for:
  21. When I asked about videos from UAB I hadn’t seen this thread. I poked around and see that UAB now has a clinician trained in autonomic dysfunction—yay! Sounds great. That is a wonderful addition to their clinical services. Keep us posted.
  22. I'm so glad to hear you have two positive appointments set up. I do hope they both go well for you.
  23. @Chris Darling - yes, a TTT would be the way to diagnose POTS, since it will show what your HR does when you are upright. A cardiologist performs this test. You can also do a similar test at home by yourself: PMTTT-Instructions.pdf (potscare.com)
  24. Dear @racingheart77 - thank you for posting your thoughts. I am sorry you have been through so much! Depression is a common result of dysautonomia, due to the disability that comes with this illness. Although there is no evidence that depression CAUSES POTS it is possible that it could CONTRIBUTE to developing POTS - simply by the inactivity and deconditioning that comes with it. Having said that - the exhaustion, fatigue, exercise and orthostatic intolerance that comes from POTS can often be mistaken for depression as well, so the 2 illnesses can easily get confused. I am sorry you have had so much to deal with, and I hope you will find a place of peace!
  25. Dyautonomia can develop from a wide variety of conditions. In my case, I have never been diagnosed with any specific syndrome but I am positive I have a form of autonomic dysfunction due a long history of depression. Specifically, I was emotionally burned in childhood/teenage years and was never able to fully recover. The pain got worse and worse over the years until it lead me to some pretty dark places that I won't get into. Eventually I became numb like in the song comfortably numb. And thats is when this autonomic stuff started happening to me. I was really scared at first but thankfully I found this forum and found much comfort in the fact I was not alone. Which is why I feel it is important for me to post this here in case anyone with similar experiences ends up on this forum. I was lost for a long time because I always labeled myself as having depression. Which is true but the correct terminology is that I was burned. I won't get too much into it as it is a sensitive topic but we are all made up of the four elements of water earth air and fire. Yes I am referring to the astrological phenomenon which is looked down upon in the scientific community but in my spiritual journey I found it to contain much truth. Anyway, I hope this won't get deleted as it has on some other places. I just want to post this here in case someone may find comfort from a similar experience as I have from this forum. Feel free to pm me. Thank you.
  26. Pistol many thanks for the information still very confusing when I have a couple of symptoms from both groups I guess the TTT is the only way to go
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