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About Bendymeat

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  1. What meds are you on? I’m on topamax which has a possible side effect of metabolic acidosis. A buildup of lactic acid will definitely make your muscles tired. I was a patient of Prof. Mathias in London and had a second autonomic testing in June. I was unable to complete my recumbent bike exercise due to muscle tiredness. However, just 6 months prior, I had no problems at all. He recommended I get my lactic acid levels tested. Unfortunately, I moved back to the States a few days later (in July....it’s been a crazy year to say the least) and stopped taking the topamax for a while to s
  2. I get these- usually when I’m resting. You know those jerks you get when you start falling asleep? Like that, but worse. I noticed that they started getting really bad last year when my POTs started. (My POTs started after surgery April 2017......actually after 2 bouts of back-to back Lyme disease in 2014/2015; however the surgery in 4/2017 is what made things go in high gear. I was bedridden for about 6 months or so after that surgery.) I also find the twitches are really bad when I have a migraine. The thing is I have acephalgic (silent) migraines where I have every symptom of a migrai
  3. I’m pretty sure this is my issue...even though all my MRIs have yet to show a leak. Or at least none of the radiologists have found the leak on my MRIs. They've found tarlov cysts in my cervical spine, mild dural ectasisa (thanks EDS!) and 2 herniations at C4 and C6. Oh- also my latest pituitary MRI in June showed *possibly* 2 microadenomas (they said have another pituitary study done in 6-12 months...). But no leaks. Even though I have fluid in my ears and twice nasal discharge (never duplicated in dr’s office, of course.) Crazy enough, I have terrible edema so one of my docs g
  4. Thank you for the recommendation! Salisbury is a bit of a hike (3hrs) but I’ll gladly do that if I don’t find anything closer. Strange how there’s no info on Chung, especially since he’s at Hopkins.
  5. Although I don’t know if I’m hyper POTs (though I’m pretty sure I am), this does happen to me quite often. Sometimes after eating cereal in the morning. Sometimes if I’m upright for too long. Sometimes if I’m excited about something and then calm down. Sometimes just because...? It sucks to not be able to move. I’m able to hear what’s going on around me but not able to respond- it’s awful! I describe it as being like one of those fainting goats- too much stress and BAM! down I go. I just have to wait it out- takes at least 10 minutes, depending on how long I pushed myself, to start being
  6. Hello all- I’m new here and, like all y’all, am looking for answers. I moved back to the States this summer and am looking for doctors to help me. My family and I were in England where Prof. Mathias dx me with autonomic dysfunction but we left before we could get any further. My story is rather long, tbh- lots of threads weaving through to try to stitch together. I describe myself as a human Medical Venn Diagram. 😏I need a dr who will be willing and able to spend time with me- not just think, “Welp- here’s another POTs patient!” and give me the same ol’ same ol’ treatment b/c
  7. Hi bombsh3ll- I’m also currently in the UK and being seen by Prof Mathias and Dr. Matharu for chronic migraines. You mentioned a postpartum hemorrhage. I was wondering- have you had an MRI of your pituitary gland? You may be suffering from Sheehan’s syndrome which could also explain a whole lot of things. best of luck!
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