Dysautonomia Zebra Posted July 9, 2018 Report Share Posted July 9, 2018 Hi all, I was diagnosed with Dysautonomia about 5 months ago, but before that, the GPs had already realized I had a crazy fast heartbeat on standing so had put me on Bisoprolol. This wasn't helping me enough so my specialist got me to try Ivabradine. I had read online about how for some people this was a magical drug when suffering from POTS so I was really hoping it was going to work. I started on 5mg (2.5 in morning and 2.5 at night) I didn't really feel much different, just a little clearer in my head, but still had the tachycardia going about 150 beats per minute on standing. It is a long travel to my dysautonomia specialist, so she discharged me with the instruction to double my dose to 10mg (5 in morning, 5 at night), having full faith in the drug that it would calm my tachycardia. However, this is not what has happened. The Ivabradine has changed my resting heart rate from about 95 to 68. BUT, when I stand up, its the same as always, going up to 150 beats on standing. This isn't normal, right? haha. I will have to get back onto the phone to my cardiologist. She seemed pretty convinced this was the fix, and I'm pretty disappointed. Has anybody else had this kind of experience with Ivabradine, and if so what helped you after that? Quote Link to comment Share on other sites More sharing options...
p8d Posted July 10, 2018 Report Share Posted July 10, 2018 Are you still fluid loading and taking salt and/or fludricortisone? Using compression stockings? No drug will help if you are blood pooling and not treating that. I did well on Ivabradine but that was in conjunction with all the other things I listed. I had to go back onto beta blockers (Bystolic) and clonidine because my hyper POTS went nuts. No drug is magical for many of us and many need multiple drugs and years to find a good combination. Quote Link to comment Share on other sites More sharing options...
Dysautonomia Zebra Posted July 10, 2018 Author Report Share Posted July 10, 2018 I always thought I needed compression stockings, but for some reason, my specialist was against it. I'll bring it up again next time I speak to them. I have enough salt, I will up my fluid intake. Its good to hear all is not lost, maybe I just need a combination, instead of just ivabradine alone. Thanks Quote Link to comment Share on other sites More sharing options...
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