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Joe

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  1. Thanks for your reply, and sorry for the late response. Glad to hear I'm not the only one, but I'm sorry that it's not working as well as it could for you. I haven't heard of Northera, but I just read about it and apparently it has only recently been prescribed for POTS. It looks promising. Good luck.
  2. Background: I have what is considered mild POTS, however my symptoms affect me greatly.. 40bpm raised supine heart rate (56-96). Small drop in BP. No syncope. Fatigue and brain fog are my worst symptoms and they are taking a toll on my life. My non-medical treatment includes increased fluids, sodium, exercise, compression garments sometimes (not wearing them much now because its really hot, didn't notice much difference with them anyway). Out of all those, exercise has been the most helpful, though it is often difficult because my body aches and I am tired. I was prescribed Midodrine 5mg a couple months ago and I started taking it 4x a day every 4 hours. I started feeling a lot better immediately, huge improvement. More than any non medical treatment, besides exercise. Blood pressure and HR were normal. After a few weeks, I noticed that it wasn't helping as much, so I emailed my Dr. and they raised my prescription. I started taking 7.5mg every 3:30 hours, 4x a day. I felt a little better but not as good as a felt when I started taking the 5mg. I've been on the 7.5mg for a few weeks now, and I feel that its losing effectiveness. I am back to feeling very fatigued and brain fogged again. I am really disappointed, I thought this was going to be a life changer but now I have to look for another drug. Have others had this kind of experience with Midodrine?
  3. Thanks for the links. Does this type of prickly itching happen in patients without small fiber neuropathy? I had two biopsies for SFN. The first was positive, the second was negative (a month apart). Both were done in the same locations, maybe a cm or two apart. I put more confidence in the second because it was done by a really good doctor who specializes in SFN (coincidentally it was Dr. Lan Zhou who co-authored the second article you linked) while the first was done by a lab. I also have burning in the legs and feet which are common symptoms of SFN, but no numbness. So it's possible this itchy and prickling sensation is a sign of SFN.
  4. I have noticed an increase in transient itching/prickly sensation on various body parts since being diagnosed a few months ago. Often in my legs/feet and arms/hands, but also back and abdomen. It lasts for a few seconds but comes back often, in the same place or in different places. Do many other POTS patients have this? What specifically causes this sensation in POTS patients?
  5. I do this too. I listen to a podcast called "Sleep With Me". It's a guy talking in a sleepy monotone voice, rambling on and on about nothing in particular. Its sole purpose is to put people to sleep, and it works better than anything else I've tried.
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