Cardiologists can prescribe it off-label for PoTS / inappropriate sinus tachycardia / dysautonomia. The cardiologist wrote to my GP, who prescribed it. (It’s not in the NICE guidelines, which is why it’s off label. I don’t even think PoTS and IST has its own NICE guidelines). After heart failure, the heart failure team in hospital reviewed it & said I should still continue taking it along with other heart meds. So I’m taking it for both indications at the moment.
Thanks @lunarainbows. Good info. Did you find it helpful before for OTI in terms of symptoms? I guess for heart failure it is crucial to maintain health and so it would be less about symptoms than function? I hope your recovery is going as well possible and you’re still feeling a bit better.
Yes I found it useful before in terms of bringing down heart rate & reducing palpitations. That reduced the dizziness. However, it didn’t change my functioning a lot, because I still felt very exhausted and had migraines & severe headache after every exertion, sensory sensitivity, still got dizzy (but the dizziness was definitely much better with Ivabradine). And I still struggled *a lot* with sitting upright. I think the reason it didn’t help a lot (as much as it helps other people with PoTS), is maybe because PoTS & dysautonomia wasn’t as big a factor as other things going on, and those other issues in my body over-rode the PoTS / IST. For example, I’m now able to sit up in a reclined position much better after being given a hospital bed (ie after having full support for my whole head and back), which I never would have guessed before - and a certain portion of not being able to sit up is also weakness, and the OI meds won’t help with that sort of thing. Also a big issue with me not being able to sit fully upright, is that I get very severe headaches on being upright - and it’s been suggested this may be a “low pressure” headache. So maybe not related to PoTS at all. But I know for some people Ivabradine helps them a lot. For the heart failure, yes it’s not really about symptoms, more for prevention. The heart failure team in hospital told me I have to take the meds I’m on now (2 new ones and Ivabradine), for the rest of my life, because otherwise the risk of relapse (ie heart failure again) increases substantially. They cited some studies about risk of death. So that’s scared me! The Ivabradine helps with bringing down heart rate further as my heart rate hadn’t come down enough with the other drugs. Interestingly, I found Bisoprolol (one of the new drugs I’m on now) helps me feel calmer (i think as it’s a beta blocker), and it’s brought my blood pressure down a lot, to the point I was able to stop my blood pressure drug I was taking previously for hyper-PoTS. It may even have helped my functioning, and I think has been been useful for some OI too.
Thank you @lunarainbows. Kind of you to explain this so carefully. I am sorry you have so much to contend with but glad a few treatments are adding up to a little reduction in symptoms and hopefully this can be built on as your Drs understanding of your particular circumstances improves. I asked because I am trying to work out what factors might be adding together and causing my own inability to sit up. And if I do tease this out what possible treatments might be available. I have very pronounced weakness which has got a lot worse since LC. Because pretty much bed bound have lost alot of muscle mass so deconditioning is a factor for me. But every week or two or three I have a couple of days where I can be up and feeling much better. I think it may be autoimmune because I felt so much better upright, much less pain for the several weeks I had acute COVID-19. I struggled to breathe though so it wasn’t a holiday unfortunately and since I be been so much worse. So I have been wondering if I need a hospital bed myself. What you say has made me think again about this idea.
