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Photon

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  1. ivabridine may help reduce your heart rate and you may want to talk to your doctor about that.
  2. Maybe you can consider Ivabradine to control your cardiac symptoms. It was better for me than beta blockers with less side effects.
  3. I would try Losartan. This has helped me.
  4. I have hyperPOTS as well. I found that losartan stabilized me to some extent, better than any other BP med.
  5. I had all of these symptoms as well and I also failed the TTT. Taking Ivabradine was the beginning of the way to recovery for me.
  6. I am happy if I can help anyone with these terrible disorders. You can order the Parasym on their website. I paid for it with my credit card and had it shipped to an address in the UK, to a friend. Then he shipped it to me. I definitely will post on anything else that I can sort out.
  7. I’m writing in case my story can help anyone. My profession is as a scientist so I am able to read the literature and navigate the medical system a bit differently than people who are not a part of it. Ivabradine: Like many people, after months and months of illness, I was diagnosed with hyperPOTS. This was after 6 months in bed debilitated and out of work. Lying in bed, I realized taking my BP (and HR) over and over again that when my resting heart rate was high I felt worse, when it was lower, I felt “better”. I realized that my BP was really not that important but heart rate was the k
  8. The tests suggest that I do not have autoimmune disease. I will post something now that includes my experience with one more drug, losarten, which might help you.
  9. Yes, it is expensive. Because I was on ivabradine for three months before I can't say how it would have been if I went straight to the parasym. Meaning, I don't know if it would have worked as effectively because I was extremely ill before the ivabradine. I can say that I wasn't able to get off the ivabradine without it. I tried twice but my heart rate increased when I tried to titrate off of it. Within in a week of using the Parasym, I tried again and it was no problem. The ivabradine was great but in general all drugs makes me feel a bit crappy so I always want to get off of them if I can.
  10. Hyperadrenergic POTs: Long road but the short version is Ivabradine got me out of bed, was able to exercise slowly slowly over months, got parts of my life back (2.5mg twice a day). After that a new technology (Parasym from the UK) a vagal stimulator (tVSN) enabled me to get off of the Ivabradine. It can't be shipped to the US but if you know someone outside of the US, they can get it to you. It is expensive, 800 dollars. It is in clinical trials in several places in the US for POTs. Dr. Nemechek uses his version of it. Now, Losartan 25mg/day. It lowered the BP but it has other effects not
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