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Everything posted by jenglynn

  1. I guess I should clarify a bit. The doctors did state "bedrest" and said that they didn't want me standing at all... but I am allowed to sit up. I can sit in a wheelchair or in a regular chair. Just no standing or walking. My tachy does get a bit worse with the sitting but I don't think it really affects my blood pressure because I haven't had any syncope while sitting that I can recall. The only thing is to get from bed to a chair, I have to crawl or scoot to get there. They did advise that I do need to exercise my legs as much as I can and they hope the crawling will help with that. A
  2. Naomi, I am not sure. I have never had a doctor tell me that I couldn't have Orthostatic Hypotension with P.O.T.S but have not been working with experts either. Maybe someone in the forum will be able to help? I do have many of the other POTS symptoms as well, dizziness, syncope, tachycardia, shortness of breath, anxiety, Gi troubles, headaches, and many many more as I am sure we are all well aware of. I didn't know that Orthostatic Hypotension was a different diagnosis than POTS. I wonder if one can have them together or if I am dealing with something else entirely?? Ugh. So frustrating
  3. I am relieved to hear that she is improving but what a scary thing for your whole family to go through. Lots of hugs and prayers sent your way. Nothing is worse than watching our children suffer!
  4. I am trying to find a specialist and working with my health plan (my employer ironically enough). I was denied to be seen at Mayo. The approved me to see a Dr. Timothy Kamp at UW-Madison, a teaching hospital. I am not very optimistic because my team in the hospital consulted with him and he didn't have any other ideas. We have also been looking for someone in Milwaukee but so far haven't found anyone my insurance company would approve. The lowest that my blood pressure gets to (as far as I know) is 35/20 and this is while I was in the hospital. Or something close to that. Very often it i
  5. No.. I haven't been driving for about 3 months (such a hard thing to give up, although I never had the energy to go anywhere when I would arrive). That is interesting that your doctors gave you the exact opposite advice. I was actually standing in the bathroom this evening briefly kind of by accident and before I knew it woke up on the bathroom floor. No injuries thank goodness. I really wish that I could learn to fall safely. I need to read and re-read your advice, Alyssa and see how you manage. While I was in the hospital the team of doctors (admittedly not very educated with POTS but
  6. Thanks Julie. I used to get pre-syncope symptoms which included: dizziness, light headedness, and my ears would start ringing loudly and everything would start to sound far away. For the most part, all of my pre-syncope symptoms have gone away and I really don't get much warning. If I do, it is such a short amount of time- less than 20 seconds- and I think by the time I get the "warning" it is too late because I am not thinking clearly enough to even get myself down to the ground. The last time I fell when I split my head open and was admitted into the hospital I had the ear ringing but I
  7. Hi Everyone, I am a very new member and I am sure this has been brought up numerous times so I apologize in advance for any repetition. I have hypo-POTS diagnosed about 5-6 months ago with increasing syncope. I am wondering what the frequency of syncope is for others with our condition. Currently, I am on complete bedrest after being released from a week in the hospital where they could not come up with any answers other than do not stand up and if you must leave bed, you must crawl on your hands and knees. My syncope before I was admitted to the hospital was happening 10-20 times a day at
  8. Hi Everyone, My name is Jen and I am 37 years old. I was officially diagnosed with P.O.T.S about 5 months ago but am no where near feeling better. I guess in many ways I am lucky, especially after reading so many of your posts where the diagnostic phase has lasted a long time. I started having symptoms in April of 2011 and was diagnosed offically in July. Looking back over my life, I think I have always had some symptoms but not to this severity. I have always been prone to fainting and lower blood pressure. I also have always had a lot of discoloring of my extremeties. It never, ever
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