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Everything posted by jangle

  1. POTS is in neurology's field, although you will see some electrophysiologists who're researchers for POTS such as Dr. Grubb and Dr. Stewart, they're more into academic side of medicine. For your everyday cardiologists they're not going to be familiar with POTS. You're much better off seeking consultation with a neurologist who's familiar with dysautonomia.
  2. There are other ways to expand blood volume (DDVAP or Daily Saline Infusions). In regards to the Long QT syndrome, that is very interesting. What type of virus did you have? I think the point of doing the TTT is to see how your blood pressure is responding to tilt as that gives one extra parameter that could explain presyncope symptoms apart from the tachycardia. I didn't have any infusions when I did my TTT, so I don't know how necessary that is. The other tests might also be useful, if they do the QSART to give a broader perspective of your ANS functioning as well as the deep breathing and v
  3. I updated my post after you posted this, but I wanted to ask how much do you think the Ivabradine is helping you in terms of your symptoms from 1-10? 1 being not at all and 10 being complete remission.
  4. And if you're coming to Rochester I can give you some names... I'm going to Rochester, however I don't know how realistic it is for me to expect to be able to get in sooner by making some calls.
  5. derekliz, what pharmacy do you use? If it is possible to do this, I would like to try Ivabradine myself (with prescription of course.) Flyingsquirrel, thanks for the information. I can sympathize with the shortness of breath issue, but right now my main concern is the presyncope/lightheadedness which is my most bothersome symptom.
  6. I didn't ask but I believe she mentioned she had them tested at other labs immediately afterward that came back negative
  7. That sounds like me, in fact the only parameter that was abnormal on my autonomic functioning exam was my cardiovagal system, they diagnosed me with parasympathetic dysfunction. In response to light exercise my HR shoots up quite high. Just a light jog will take me close to 200. The only thing is that my resting pulse is around 90 and not over 100, so I think that's why they diagnosed me with POTS. However, I fit the other things you mentioned. Anymore it's looking like the research is suggesting an overlap between IST and POTS, it's probable they share many of the pathogenetic mechanisms. All
  8. Does anyone else have any success stories with Ivabradine? Sometimes I wonder if I have IST instead of POTS. I'm sure I've read it before, but what's the difference in diagnostic criteria between IST and POTS?
  9. I didn't do well on SSRIS. You might have anxiety, that's being associated with POTS in a few studies, however the anxiety is a symptom of POTS not a cause. If your doctor isn't taking your tachycardia seriously then if I were you I would go to another doctor.
  10. Well yes it can be frustrating but it really depends on how effective it really is for POTS. I've read on this board that it has seemed to help a few people but I haven't really read cases where it was life altering like the study seems to suggest. This might be due to selection bias, obviously the people posting on this board are doing so because they haven't gotten complete relief. I do like the percentages posted by the study and I do think it is worth a try. There might be some means of obtaining the medication legally and I will ask about them at my next appointment.
  11. It's been out for years and there really hasn't been an effort that I can tell to approve it. I don't even think the company is even going to try. The process could be decades.
  12. My question to him was if there were any clinical studies that were going to open up about using this research as a treatment. At this point in my life I'm only interested in treatments. I believe the doctors are too busy to field questions from people who aren't even their patients, so I presume I won't get answers until I actually do go to Mayo Clinic. Which according to their wait list is going to be a very long time.
  13. No, she's said she's had two false positives before with that blood test and that she wants me to wait until I go to Mayo.
  14. I already emailed the lead author of the Mayo study, he just replied to me that he does not see patients but that he was forwarding my email to other doctors at Mayo who do. This was about 2 weeks ago, and I haven't gotten a reply back from anyone. Dr. Low who was also in that study also doesn't see patients as I already asked. Part of the reason why I'm going to Mayo is to try to follow up on this. However, I already asked if there are any doctors doing clinical studies at Mayo and the receptionist told me no. I will see if anything changes over the coming months but it seems that no one is f
  15. They didn't even book me for an appointment, they just have me on a waitlist in line and what they do is whenever an appt opens up they go down the waitlist.
  16. Glad to hear your symptoms have been helped as well as your sister on this drug. You said it helps you not feel like you're going to pass out? My major symptom is lightheaded/presyncope, but mine is chronically felt. Does is help you with your overall lightheadedness? There was an editorial posted about this study here: http://content.onlin...ticleID=1358180 Which cited another study that said the longer you're on the drug the better its effects. Unfortunately it's not currently licensed in the USA, but perhaps they'll license it under the compassionate/orphan drug act.
  17. I did find a local neuro, but she's deferring any autoimmunity treatment until my Mayo appt. The good news is is that Mayo clinic (MN) has its own POTS treatment center. Gotta like the sound of that.
  18. This really discourages me. None of my local doctors know what to do, and the one safe haven of medicine is over a year away.
  19. I think Ivabradine is different than bystolic. I'm wondering if this drug is even available in the USA? I've looked in the past on these boards and it seems to have helped quite a few people.
  20. http://www.sciencedi...735109712026915 Seems like Ivabradine was successful in this trial. It is true that POTS isn't IST, but their cohort (resting pulse 88 +/- 11 bpm) and (standing pulse 108 +/- 11 bpm) and (during effort 176 +/- 17bpm) well gosh that sounds like me. My rest pulse is 90 and my standing pulse is 120 and during exercise my rate has been known to go over 200. Even in the Mayo clinic study they're suggesting that IST and POTS might share the same mechanism. If it works for them, it might work for some of us. Does anyone know of people who had success with Ivabradine?
  21. It is true that cfs responders to ritixumab eventually revert back, but this is likely due to regeneration of b cells over time and thus the autoantibodies. Unfortunately there isn't optimal therapy in autoimmune diseases.
  22. I would like to, but the immune system is perhaps nearly as complex as the nervous system. In the mayo clinic study they presented only ideas about what could be going on. The group out of Australia cited a study on ciliary neurotrophic factor and NET dysfunction.
  23. The calcium angle is interesting, but I have not read a connection between improper calcium metabolism and POTS. Let me know what your future tests indicate.
  24. This is a question I'd like an answer to as well. I had a rheumatologist from before because I was ANA positive with Raynauds. However, I showed the study regarding autoimmunity to her and called her office and she would not answer my question as to who to go to. Rheumatologists are typically the people you see for autoimmune diseases, but most autoimmune diseases involve the musculoskeletal system. For this type of autoimmune disease, you're going to need to see an immunologist or a neurologist who has an interest in treating autoimmune neurological disorders. I've looked for immunologists, b
  25. Propanolol doesn't require a few weeks to kick in. 10 mg is used to treat anxiety, however it wouldn't be enough to slow a heart rate down significantly.
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