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Everything posted by DBP4620

  1. I get this as well, does anyone have any ideas as to what may cause this/ how to relive this?
  2. I saw an article online (http://www.nj.com/hunterdon-county-democrat/index.ssf/2014/11/living_with_postural_orthostat.html), and made an appointment with Dr. Rudnick. I was dxed 4 years ago by the Mayo Clinic but Dr. Rudnick is so much closer to home and was fantastic. Very knowledgeable about POTS, has a beat to beat tilt at his hospital and is super down to earth and easy to talk to. I would highly recommend anyone in the area to make an appointment and see Dr. Rudnick.
  3. I just wanted to mention how great Dr. Thomas Ahern at Scripps Clinic in California is! I was diagnosed at Mayo by Dr. G (who is equally great) but am out here in San Diego from Brain Injury treatment and have started treating with Dr. Ahern who is just so wonderful. He's very knowledgeable give you so much time and most importantly thinks out side the box to do his best to help you. He considers everything and is even knowledgeable and treats Mast Cell issues. He's so accessible and has regular follow ups and returns phone calls quickly! I would highly highly recommend him to anyone on the west coast and if anyone has any questions feel free to ask or PM me!
  4. Sorry, I wasn't so clear (brain fog)! my neurologist has prescribed the Ivabradine, I just need a reputable pharmacy to get it at, does anyone know of one either in Canada or overseas?
  5. Does anyone in the US have a way of getting Ivabradine. I know it's not FDA approved yet but know that it is possible to get from a Canadian/overseas pharmacy. Does anyone have recommendations? Thanks In advance!
  6. I occasionally (2-3 times a week on different scales of intensity) get a burning sensation in my outer ear, the ear itself turns fire red and it is hot to the touch and painful (mostly left ear, occasionally right). Nothing much helps (doc suggested ice though he never heard of this himself). Has anyone else had this as a symptom if so any successful treatments?
  7. does anyone know which doctor in Israel is doing the study? Is it Giris Jacob? I was thinking about trying to go overseas to get Ivabradine and do have family in Israel but since the trip is so difficult would want to make sure I see the right doctor and can get enough supply.
  8. Dr Goodman is very knowledgable and up to date on most things related to and involving areas of pots. While I never brought him an article he strikes me as the type of doctor who would gladly look at anything you brought him and give you his opinion. In terms of mast cell mayo az has an amazing allergist who has a strong interest and knowledge about both mast cell and knowledge of pots his name is dr john Lewis and I would strongly reccomended calling ASAP to try to get in with him during your trip as he books up quick his secretary is really great and her name is Terry in the allergy department.
  9. I have the same ear issues and mine are sometimes even very painful.... does anyone have any idea what causes this?
  10. I had autonomic testing today and my hr went up 60 bpm from start to end of tilt but my bp was high in the 160-180/90-100 range during the tilt..... is that normal for POTS or is that hyperadernergic, or something else?
  11. Do you guys tend to get a higher heart rate with the TTT then with just standing or not?
  12. What kind of Autonomic Testing do they offer? How does their lab compare to Arizona?
  13. turns out he only researches doesn't see patients now.... o well
  14. has anyone seen or heard about him?
  15. np Naomi.... im wondering what would show more in my case the upright mri or mra just want to look at any changes in the brain vs my mri lying down
  16. Jen, I can't answer the tilt table question because I had only had poor man tilts before the Mayo. You will see Dr. Goodman before the testing and can definitely way pros/cons with him and let him no your concerns. I think a place like Mayo would be great for you after reading your other post, they all work as a team and have every speciality right there for you to see.
  17. its to make sure orthostatic tremors are just that..... basically an eeg of your brain while putting different censors on your body and having you do all sorts of different movements.... I think they only do it mayo, i cant find much info online about it at all
  18. I've had this too when I stand up almost like im floating on air and sorta dont feel within myself... also I have lost sensation in my arm at times and have even felt hot water as cold
  19. Has anyone ever had acupuncture for POTS, has it worked, what was the treatment protocol?
  20. Does anyone know about them or had one, has it shown anything.... what can it show in terms of POTS?
  21. I saw Dr. Goodman for my diagnoses..... He is a really great guy he's understated and quiet but extremely smart and a great listener. He is very thorough and depending on your other complaints will send you for a full batch of tests. For POTS in general in me he did a qsart,tilt table (neuro not cardiac) catacholomine test, movement studies test, holter moniter, 24 hour bp moniter, and mri, as well as a ton of blood work to rule out everything under the sun and check on your levels. He definitely knows what he's doing and is a great guy and will follow up with you over the phone after your visit and his nurse Janie is great also. Hope this helps
  22. Would love to see Dr. Grubb, however his wait time is over a year!
  23. The autonomic center at nyu is unfortunately specialized in familial and I agree Naomi, dr tullo wasn't that great
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