Katybug Posted February 4, 2015 Report Share Posted February 4, 2015 I know it's disappointing to not have a break through at a much anticipated appointment, but, I have found that sometimes the best thing a doctor can do for me is send me to the right doctor who can do something for me. I find that good referrals are priceless. Quote Link to comment Share on other sites More sharing options...
nomdeguerre0850 Posted February 4, 2015 Report Share Posted February 4, 2015 I also take the lead in treatment options/suggestions with physicians I work with. Although a lot of research is being done about dysautonomias, many physicians are not familiar with any of it. With so much research and new findings in all the different medical fields, it's not surprising medicine is fracturing even more along specialty lines within specialties.I take Ivabradine 5mg bid and it helps with my tachy and OI. Unfortunately it is not yet FDA approved, so to get in in this country I had to find a physician willing to write me a script so I could import it from India/Canada. It definitely helps me. I also had bad results with beta blockers.Ivabradine has been fast-tracked and given priority review status by the FDA. (I think in April last year). Since it's been used successfully in Europe for about 8 years, hopefully it will be approved quickly like Northera.I too have basically given up on curing, but am slowly getting better control of my symptoms. Baby steps and appreciating each little gain.Good luck in your quest for answers and potential solutions. Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted February 5, 2015 Report Share Posted February 5, 2015 gjenson PM on it's way! Quote Link to comment Share on other sites More sharing options...
gjensen Posted February 6, 2015 Author Report Share Posted February 6, 2015 Thank you to all of you. Quote Link to comment Share on other sites More sharing options...
Goschi Posted February 6, 2015 Report Share Posted February 6, 2015 I really don't want to discourage anybody - especially as we all seem to be different (i.e. I guess we all have different underlying causes of our dysautonomias).I live in Europe and got Ivabradine very soon after my POTS-diagnosis. It lowered my HR immediately (with no side effects, btw!). But it did nothing for the HR-increase from supine to upright. Before Ivabradine: 80 supine, 125 standing. With Ivabradine: 60 supine, 105 standing. Consequently, Ivabradine did nothing for the whole range of my symptoms.... :-( Quote Link to comment Share on other sites More sharing options...
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