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Nikki

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Everything posted by Nikki

  1. Hey everyone - I was seeing a neurophysiologist in Hershey, PA for the past few months. She did some autonomic testing and my breathing test and sweat test came back abnormal. She said there was nothing else she could do for me though, so she is sending me to New York to the Dysautonomia Center at NYU. Has anyone ever been there before? I have an appointment for March 19th..The first appointment will be testing - the dreaded tilt table test is one of them. They said I'll have a follow up appointment 2 weeks later with a Dr. Kaufman. I'm just wondering if anyone has had any luck with this pla
  2. I had the valsalva test done yesterday, and I was just wondering - is your blood pressure supposed to be monitored during this test? I don't know much about it but the people doing the test didn't seem to know what they were doing the entire time.. They had 3 electrodes hooked up (two on my chest, one on my rib) but that was all...or can they measure it that way? Cause I was thinking and I'm 99% sure my doctor said they'd be watching my heart rate and blood pressure, but they never hooked any cuff to me or anything. So I'm not sure if I should call and say something or not. I don't have an app
  3. I voted that 'my symptoms worsened'..that is when I upped my dose. It caused my blood pressure to spike (like 170/145 kind of spike) and it happened often. So I lowered the dose and I was on it for at least 6 months, probably longer - and it didn't effect me at all, so I just stopped taking it.
  4. Rest, eat healthy (add in some extra salt!), drink plenty of fluids..water, powerade/gatorade..and just hope for the best. Congats on getting married.
  5. I recently had some blood tests done, and I always get a copy of the results for myself. They did a catecholamine test and the norepinephrine part came back fine but for the epinephrine, it came back flagged high. It says that the normal range is 0-62, and mine was 94. The doctor that ordered the tests never called me or anything..so I'm wondering if that's a normal number? I guess everything fluctuates a little bit, I'm just curious if anyone knows what is considered too high,
  6. I have the same thing on certain parts of my body. I remember one time I was laying on our couch and the sun was shining in on me..and I guess I had an itch on my hand or something..but when I lifted it to scratch, I noticed that in the sun, everything was see-through! You could see so many veins that I never even noticed before. It was so weird..I guess that's what people mean by 'translucent skin'. I've never been tested for EDS but I definitely have a lot of the symptoms.
  7. This is interesting. I've never seen this site before. I'm definitely going to bookmark it and read it more later! Thanks for sharing.
  8. Hm that's interesting..I know when I had infections and had to be on an antibiotic, my symptoms surprisingly went away for awhile..but then it always come back. I don't know how Mucinex works though.
  9. That's great! It makes it much easier to share with friends and family who are interested in learning more about our condition.
  10. Before taking any medication my heart rate was 134 lying down, and shot up to 180 when I stood up. Now that I'm on Pindolol, it stays under 130 when I'm standing most days. But like someone above me said, my heart doesn't always correspond with my symptoms. My blood pressure on the other hand is all over the place. Just a couple weeks ago I was feeling horrible so I took it and it was like 60/48 and then 10 minutes later it was 130/100. I think that's what causes most of my problems..But sometimes both my heart rate and blood pressure are fine and I still feel dizzy/weak, so I don't know what
  11. I had an EMG and nerve conduction study done a few days ago, and the doctor told me that I have nerve damage in my right leg from my knee down, and my ankle area didn't show any response to the shocks. He is sending me for blood tests to check for about 11 different things (Lyme disease, diabetes, Lupus..and other autoimmune things) but I was wondering if anyone here has had this sort of problem? I'm guessing he doesn't think it's POTS related but I was just curious what you guys thought.
  12. For me dizziness is the worst...Then I would say vision problems - focusing on things especially (though I'm not sure that is 100% POTS, as of now that's all that I know of that could be causing it), and fatigue.
  13. I'm 23 years old, from Pennsylvania. I was diagnosed with POTS in 2009. I've always struggled with dizzines and balance problems but it never was as bad as it was in 2009/2010. I was stuck in bed or just in the house for at least a year and a half. I think for me, POTS was a sudden thing because even though I did have dizziness before, I never had a pounding heart, or chest pains and things like that until 2009. At the beginning of this year, I was diagnosed with having a pseduotumor (I had the symptoms of having a brain tumor, but no actual tumor). I had optic nerve swelling and my vision in
  14. I have a lot of dizziness, and get shortness of breath easily too. Sometimes I can do 30 minutes of cardio exercise and be fine, other times I can barely do 10 minutes and I just feel like I'm going to faint. For me it just seems unpredictable. Or if I can exercise for 30 minutes or so, I might pay for it afterwards..but there's that chance that I could be fine and not be badly affected by it. Sheesh, just typing this out - I can see how hard it is for doctors to understand and believe us lol..but it's true..I think certain things bother us one day that might not the next..but then something e
  15. I've only had one tilt table test done and it wasn't as bad as I thought. I was lying down for about 40 minutes because the cardiologist was running late. My heart rate just lying there was 134. Then they tilted me up and it shot up to 180, and my blood pressure went up as well. I never actually fainted, but I felt VERY close to it. I was very dizzy and things were starting to fade out. Eventually standing got a bit easier, and they kept me standing for about 20 minutes and then laid me back down. He said I had POTS. They did have an IV ready, but they didn't have to inject me with anything
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