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monica

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About monica

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  1. Thanks for the suggestions Dana..I've sent you a private message. Thanks for the reminder Corina, will not elaborate on doctors experiences on the forum If anyone else has any suggestions, please let me know..Thank you!
  2. Thanks Racer! I can't go to Dr.Giuliani ( Insurance issues) and Dr. Susan Baser is not for POTS. I called her office and they said that the Information about her on that website is wrong
  3. Hi everyone, I'm so depressed and urgently need your help. My Insurance changed recently ( not in my control...can't do anything about it ) and my awesome Doctor who diagnosed me with POTS and was treating me doesn't take the new Insurance. I really need to find someone who knows about POTS asap. I can't seem to find anyone.... Can you please suggest someone who treats POTS in the Pittsburgh, PA area. Thanks so much!
  4. Oh! So looks like a lot of us get this. Yes! Brain-zaps would be the right word for it. This is interesting because I got checked for Celiac disease and don't have it but I was reading that you can test negative for Celiac but still be gluten-intolerant?!
  5. Hi Naomi! Yeah, Exactly! I have it sometimes and it just goes away and then a month later again! It's quite scary..like I'm getting electric shocks or something in my brain. Just recently started having it. My mom said she's been having it for years. The vibration in my foot started last year too.... exactly as you said..like a cell phone vibrating near my foot. The first time it happened I thought it was an earthquake or something, Lol ( I used to live somewhere earthquakes were common). Incidentally, I have been the most Potsie last year when I finally got diagnosed.... I was having really
  6. Hi Everyone, I finally have a diagnosis of Ehlers-Danlos Syndrome. Saw a Geneticist specializing in Connective Tissure Disorders and she confirmed it. Though she said that I have EDS-Classical type and not EDS-Hypermobility/Hypermobility syndrome that my Rheumatologist suspected. She also asked me to get Genetic blood testing done to rule out Stickler's syndrome and Vascular EDS. I have a question.....Recently, I have been having this strange vibration, almost electric-like feeling in my head. It's hard to describe..it lasts for only a few seconds but it's almost as if my head/brain is gettin
  7. I was not taking any medications at these times , so definitely not medicine related. Also, had different kinds of food when it happened and have had the same foods later too to see if it's food allergy but I was fine. One thing though is that none of these foods were home-cooked..they were either from a restaurant or processed.
  8. I take my BP with a Withings BP cuff and I too am unable to take get a reading on it when I'm the most symptomatic. According to my iBP app, my average PP is 28, highest is 50 and the lowest is 15 (This is obviously considering that I'm unable to take many recordings when I'm symptomatic). I feel the worse when my PP is below 20 and usually feel faint when it happens. The 2 times I was able to take recordings just when the presyncopes started, my PP was 18 and 19 respectively. Batik, I too have issues after meals... the last 6-7 times I had presyncopes/fainted, it was within 1 hr of eating. A
  9. This is such a great video!!!! Going to share it with family and friends! Thank you
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