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kimpotster

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Everything posted by kimpotster

  1. Hi again Pistol! I just recently started a trial of NS infusions twice a week (1L run for about 2 hours). I noticed the effect was quite temporary (during the infusion my HR normalized, almost reaching 60s, and my BP, which runs low and normally has a pretty narrow pulse pressure, looked almost normal!). Did you say that was true for you in your experience? Did you only switch to LR due to your experience in ER admissions? Additionally, how did you know to try running at a slower speed? I haven't experimented with that quite yet. I also realize I am fresh to this trial so I may be speaking prematurely!
  2. Hi! I know this is an old post but hoping you can give any update on your ear situation! I first came to these forums because of this issue, and finally decided to join after my official diagnosis. I have never had major ear issues in the past but 3-4 months into dysautonomia, my right side ear constantly feels clogged and pops frequently when I swallow (sometimes goes away when eating). I fully believe this is related to blood flow/pressure to the ear nerves, as the sensation of fullness/pressure indicates such. I have the same issue: I don't have vertigo but instead it feels like I am a bit drunk in my balance. My ENT did a VNG test that showed my balance is off on the 'good' side, which I assume is trying to compensate for the 'bad' side.
  3. I went to an ENT first because I was afraid this was affecting my hearing, and was treated as if I had an infection by my PCP (antibiotics did nothing). In a hearing test, I was normal so they ordered a VNG test for my vestibular system. The caloric test showed my 'bad' ear side was normal but my opposing side ('good' ear) is weakened, so they ordered vestibular therapy. I have not done the therapy, as I am not convinced it alone would help, so I am hopeful that treating my POTS would give me more clues or relief. Do you have Meniere's by chance? And was it an issue before dysautonomia?
  4. Hi there! Did you end up trying the betahistine? One of my more annoying symptoms is an almost constant ear pressure/fullness on my right side.
  5. I've only been diagnosed for about 1-2 months, so I am new to a lot of this, but would you say that if I similarly felt worse (terrible headaches) with midodrine, would it be safe to assume that compression wear wouldn't be beneficial for my phenotype of POTS? We are guessing it is possibly hyperadrenergic but I have lower BP than some others have, without fainting.
  6. I appreciate you sharing this and don't think it is TMI, especially considering the wide range of issues we have! Also makes me feel more normal, if that's possible Are your stools ever lighter in color when you are flaring?
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