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sonyasmith12

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Everything posted by sonyasmith12

  1. I am definitely interested. let me know details pls.
  2. Thank you guys for your advice. I will definitely try. I love skiing, since I'm originally from Canada, but haven't been since I've been sick w POTS.I have a really hard time traveling. Usually sets me back a few days all together.
  3. http://www.amazon.com/Drive-Medical-Deluxe-Folding-Black/dp/B002VWJYT8/ref=sr_1_3?s=hpc&ie=UTF8&qid=1363661925&sr=1-3&keywords=Cane+stool This is website to cane/stool
  4. http://www.amazon.com/Earthlite-Pneumatic-Rolling-Massage-Stool/dp/B00122OW9K This is website to adjustable rolling stool
  5. I ordered it online. Not sure what site. Just look for an adjustable rolling stool. It's a lifesaver. As well as my cane chair that I use when I am in a store line.
  6. I bought a rolling stool for the kitchen that I sit on to do cooking, dishes, etc. and another regular stool in laundry room, makes a world of difference. Also squatting always, never bending is helpful. I had to give up vacuuming etc, since it always sets off my symptoms. Hope that helps.
  7. I am accompanying my family on a ski trip to Jackson Hole, WY on Friday. I live in Florida @ sea level. Wondering if anyone has had any issues with there POTS symptoms in higher elevation. My husband says I should try skiing one day. Has anyone ever tried?
  8. I just got one last week, all I put on it was Postural orthostatic tachycardia syndrome , then under that diagnoses I put call --------- then they can get all the accurate information from a trusted family member or friend.
  9. Relax86, I have your exact same issues. My family hates that my smell issue is ongoing, but it get headaches, sinus pain, nausea. I developed this about 10years ago. I've always had light, motion issues since kid. likely motion sickness?
  10. I went to Vanderbilt back in April. After 10mins TTT Standing-My bp did increase >10 and heart rate was >30 increased and norepinephrine was 1260, Dr.biagionni told me I was had hyperadrenic POTS.
  11. I guess they state we are all prone to low sodium levels if we don't take in adequate amounts of salt compared to fluid intake. It can dilute it too much
  12. Yes. Relax86, I get the same symptoms as you, except it's my left side of cheek down left side of neck- numbness and almost a tight neck pressure. Very uncomfortable.
  13. Katie, I'm going to Vandy this Monday 7/23- for research study. Good luck!
  14. Oh, yes I did that. But they didn't ask to see it until I went into Vanderbilt. They were all around the same 110/70 HR-60-70- laying 120-130/80-90 HR 110's -standing.
  15. I saw dr. Biaggioni at the clinic mid April. Then I got a spot in study within 2months. They have a very strict protocol to get into study. They do evaluate you in depth at clinic and then you have to know your interest in research study. It's the idiopathic POTS pts they are interested in I'm pretty sure.
  16. I'm being admitted to Vanderbilt tommorrow for POTS Research Studies. Would love to hear your outcomes, and if you would have any suggestions for me.
  17. I was diagnosed with reactive hypoglycemia 10yrs ago. They sent me to a Endocrinologist at Cleveland clinic last year, and he stated reactive hypoglycemia is not a diagnosis recognized any longer and that I have no hypoglycemia, since my fast glucose is always normal. I never knew what to think after that....never know who to trust anymore. I still always feel sick about 40 mins after I eat any sugary carb without protein. Etc.
  18. I was currently admitted to hospital with confusion, severe nausea, feeling worse then ever. Sodium level ended up being 128, I was taking florinef and lots of salt and water
  19. I have been sick since Oct, worsened in last 2 months. Does anyone feel like such a burden to their families? My husband states I need to stop the pitty party. It's very depressing being left behind for everything.
  20. Thank you Mandy, I am going to start praying for our forum and members.
  21. I am a RN, haven't been able to work since beginning of Oct 2011. Am I waiting my time applying with the diagnosis of Autonomic Neuropathy & POTS? I know I have enough work hours.
  22. I did like you said and cut my dose of nadalol to 5mg, what a difference, my energy is coming back and tachycardia is still controlled. The dr told me the lowest therapeutic dose for nadolol was 10mg, well I had to cut the 20mg tab into 1/4 pieces, but it works:)
  23. I just started nadolol which is a beta blocker 1 week ago, in the last 4 days I can barely keep my eyes open. It does stop the tachycardia, but then I am good for nothing else. Does this go away??
  24. Thank you FarmerAmy. This illness does go unrecognized in the family as well as friends. They don't see something broken so they think I am exaggerating my symptoms. It definitely takes a toll on your emotions. I'm so thankful to have found this site, since I can never express to anyone the significant impact this syndrome has on our lives.
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