Ivabradine anyone?

[MTRJ75]

Been reading a bit about how Ivabradine may be a superior alternative to beta blockers for us. 

It was mentioned both in the POTS guide (recently posted here) and in a recent Health Rising blog post in which it was suggested it may improve both fatigue and palpitations. 

https://www.healthrising.org/blog/2020/12/26/ivabradine-postural-orthostatic-tachycardia-syndrome-chronic-fatigue-syndrome/

Anyone have an experiences they'd like to share? 

[cmep37]

My cardiologist was extremely positive about it - he told me it would reduce my standing HR without lowering my BP like beta blockers did.  Apparently a colleague had had great success with it!  I had read about it and knew it was contraindicated if you have bradycardia - at that point my HR would be high 40s/low 50s a few times a month but my cardiologist though it was still worth a try.  Within a fortnight of starting at half a normal dose (so 2.5mg a day) my HR had dropped into the high 30s/low 40s in the afternoons and evenings so I had to stop.  To be honest it was after this my bradycardia started to become much worse; now it is low 40s most evenings without the Ivabradine! Although it didn't help me, I do know a lot of people who get on very well with it and use it in combination with Midodrine and/or Fludrocortisone to significantly improve symptoms.

[MTRJ75]

I'm sorry it didn't work for you @cmep37even at such a low dose. I'm glad I asked because I hadn't read about that contraindication (though bradycardia & low blood pressure are very rarely issues for me). I'm generally hoping to improve on fatigue and muscle aches, along with tachycardia and be able to physically do more. 

[p8d]

I have taken this a couple of times and it definitely helps the tachycardia to a degree. I have to be really well hydrated though and like everything else it only helps while sitting and for about 20 minutes walking around after that all h@ll breaks loose again including tachycardia/sweating/have to sit this second etc. I am currently on this and other meds, alpha and beta blocker and trying to determine which one is causing tachycardia about an hour after I take them so am cutting them out one by one over several weeks. I wish I could say it was life changing but it isn’t. I noticed no increase in energy or other than cardiac effects.

[Bumpandhustle]

Hi everyone, I have a POTS/IST crossover and my resting heart rate between 90 and 110, spiking upward from there. My personal journey with ivabradine has been great, (I’m on the 2.5mg as well) except when I’m flaring- I  have a bunch of other conditions too. For whatever reason, during those times it’s less effective, but I have still noticed a 10-20 bpm difference shaved off my highest spikes and that’s been more comfortable for me. It’s only a little scary when I plummet super low, but have a plan with my cardiologist if I hit under 40. I’m wishing everyone the very best. Please feel free to ask me any questions. If I can help I will. 

[MTRJ75]

Thank you for the input.

I'm sorry it hasn't worked as you'd hoped @p8dbut if you're walking 20 minutes you're way ahead of me the last few weeks. I also understand how frustrating it can be to feel like you can do something, but learn the hard way that you can't. It's like being trapped. And that's supposedly the good days. 

I don't understand how POTS/IST can crossover @Bumpandhustlebecause isn't it all just POTS? I thought IST was diagnosed when they couldn't figure out what was causing the irregularities, but once you realize you have POTS, that's the reason? 

[Pistol]

5 hours ago, MTRJ75 said:

I don't understand how POTS/IST can crossover @Bumpandhustlebecause isn't it all just POTS?

@MTRJ75 - IST is an arrhythmia that CAN be caused by dysautonomia but is not POTS. Usually it originates within the sinus node. The biggest difference is that with IST the resting HR is high as well, whereas in POTS the tachycardia occurs upon being upright. However - frequently POTS gets misdiagnosed as IST and vice-versa. A TTT usually clears up the confusion.