I found a couple of old threads
http://forums.phoenixrising.me/index.php?threads/pots-or-not-pots-really-confused.22375/
and
http://forums.phoenixrising.me/inde...for-inappropriate-sinus-tachy-and-pots.25231/
but couldn't see anything more recent specifically discussing this.
Would be interested in anyone's experience with the drug, has it helped, side effects, any long term problems or withdrawl issues, how long before you started to notice any difference etc etc.
@Sea and
@Shell as you both mentioned in the other threads that you/family were taking ivabradine - how did it work out ?
(I've been prescribed it but not started on it yet, GP has suggested 2.5 mg to begin but I will probably half it again to start)
Hello eafw.
I have long term severe POTS, so will attempt to give you some insight on using Ivabradine. My opinions will of course be biased, because they are on my experience, and all patients react differently to drugs and can tolerate certain side effects more than others, and will 'detect' more benefits than others.
Dosage:
5mg seems to be a standardised dose from what I hear, but some patients can't even tolerate that.
7.5mg seems maybe the best balance if you are 'active' and need to have some 'protection'.
10mg could be a bit too much in my view. Personally I'd not take this much.
Ivabradine positive and minus points seems to be:
+ Cleaner than beta blockers that are considered 'dirty'. e.g. they cross the blood brain barrier more. On that basis I would rate it better than Bisoprolol, also used in POTS.
+ Doesn't appear to reduce cardiac output, which in ME/POTS is a huge
benefit.
+ Doesn't appear to have the problems beta blockers do, as it's not a beta blocker. I can't vouch for it not causing Asthma, but I would imagine it is no way near as dodgy as Propanalol and other 'old' beta blockers I wouldn't touch with a barge pole if i had Asthma and POTS.
However........
- The main side effect is dizzyness and shortness of breath but not this is considered to be as intrusive as beta blockers, yet others might not agree. Hence you're doing the correct thing, and starting on a tiny dose.
- There are some visual artifacts you'll experience, that beta blockers do not have. As I don't go out the house this doesn't bother me (I live in the dark like a bat), however, in rare times I do change rooms between light and dark, some odd streaming effect is visible. The more you take (dosage), the more this is visible. It doesn't bother me personally, but if I went out the house into lots of different lighting situations, I'd notice it more. Personally I barely notice it, and never worry about taking a tablet with a worry my vision will be affected.
- No anti adrenaline affects, so unlike beta blockers it will have no effect on autonomic dysfunction induced anxiety levels, which if you have POTS severely, will always be part of your life unfortunately as sympathetic nervous system arousal (due to dysautonomia), tends to make people 'freak out', when the CNS is more active than usual under the slightest provocation. On that basis only, I would say beta blockers are 'better' than Ivabradine.
Then we have the problem of slowing the heart rate to begin with in POTS.....
In POTS your heart races for a reason, but not one reason. There are multiple reasons. One is a compensatory mechanism for becoming upright. Often this is excessive, but also it can be to stop you fainting. (POTS patients rarely faint, however) mostly just feel faint (pre syncope) but don't complete the cycle luckily.
Too slow a hear rate and you'll hate the feeling. Not slowed down enough and you might still be unable
to stand up due to excessive postural tachycardia, never mind if you attempt to exert yourself such as trying to stand for a short while or walk a little.
As with all meds, you'll have to find a very fine 'window' of a balance with a trade off of side effects, with benefits of what it does for you after you take it.
To my knowledge, Ivabradine is currently the 'best' drug available for POTS to control heart rate, even if Ivabradine is not officially licensed, as a POTS medication. (Same goes for Midodrine). On that basis I would stick with it, and see if you can tolerate it.
Hopefully you can, and you'll benefit from it. All the best and take care.