Ivabradine/Low resting heart rate--experiences?

[Jyoti]

I just met with a new EP cardiologist who people say is a dysautonomia specialist.  He had my thick pile of records on hand, asked me a few questions, checked my pulse sitting and standing (for less than 3 minutes).  He listened to my heart and lungs.  That was the extent of any physical exam.  He was compassionate, never questioned my experience or my symptoms and seemed kind and generally knowledgable.  

He asked me to try Corlanor (Ivabradine) starting at 5mg 2X a day.   

When I looked into this, I discovered that it is contraindicated for people with RHR below 70 or possibly 60, depending on where you look.  The risk for serious bradycardia is significant.  My RHR tends to be under 55 and dips into the mid-40s when I am sleeping.  (My mom was not infrequently hospitalized with bradycardia, which adds to my inclination to be cautious.)

I am going to try to query him about this, but my guess is that he missed this detail in the epic story of my dysautonomic travels.

Does anyone here have any experience with Ivabradine?  Did it work for you, and if so, how?  Did it not work or have bad side effects?  I am obviously especially interested in anyone who has tried it and has a RHR that is under 60.

Thanks in advance for sharing anything you can.

[MTRJ75]

I'm currently taking 10 mg Propanolol in the morning (because my BP tends to run slightly high) and 2.5 mg Ivadbradine in the evening. This seems to have controlled my heart palpitations the best. I still have them (skipping, racing, pounding), but not as frequently or symptomatically.

I have noticed that my resting heart rate has been a bit lower at night, sometimes barely dipping below 60 while lying in bed. Not sure if it's gone below that while sleeping. 

See if you can start on a lower dose and see what happens. 

[MikeO]

14 hours ago, Jyoti said:

My RHR tends to be under 55 and dips into the mid-40s when I am sleeping

I would inquire as to why he thinks you need Ivabradine. 55 for a daytime RHR is low. Your sleeping is a bit low as well but i have seen the mid 40's as well.

Do you have some kind of heart issue that may be of concern? or angina symptoms?

[Jyoti]

18 hours ago, MTRJ75 said:

I'm currently taking 10 mg Propanolol in the morning (because my BP tends to run slightly high) and 2.5 mg Ivadbradine in the evening. This seems to have controlled my heart palpitations the best. I still have them (skipping, racing, pounding), but not as frequently or symptomatically.

That is good news, @MTRJ75.   It sucks that we are in the land of "I'll take any small improvement with gratitude" but...that is where we are.  And with a few small improvements, life gets more livable.  I may indeed give it a go at 2.5 mg.

 

4 hours ago, MikeO said:

Do you have some kind of heart issue that may be of concern? or angina symptoms?

Nope.  Nothing like that at all.  My suspicion is that the doctor just didn't look carefully enough at my situation, including RHR.  I think I will ask him what his thinking was and make sure that I am on board with it.  

The other thing is that I have found a number of studies examining the efficacy of ivabradine in POTS.  Mostly it seems helpful in hyperadrenergic POTS, which I may or may not have (I think I meet the criterion of standing NE over 600, but have never been officially diagnoses as such) and in many cases, very helpful.  

In adults (in these studies), no adverse effect of bradycardia was noted, BUT all studies were limited to patients with resting heart rates over 60 or 70 bpm.  Which, if I understand correctly, was a cut-off that came from initial trials of Ivabradine in people with heart failure where they found that the positive effects were most prominent in people with RHR over 70.  Since the trials were being done to demonstrate that Ivabradine should get FDA approval, they stuck to a demographic where this was clearest.

Thanks to both of you for sharing your experiences/thoughts!

[htberg]

My pulmonologist wants me to try it. My resting HR is 52 daytime and low 40s night time. My BP is also low 90/50.  I voiced the same concerns you have and she said it only stops the tachycardia (puts a cap on the high number) and doesn't reduce the bradycardia to a lower number. When I stand too long w/out movement--i.e. grocery store lines, my BP drops and HR rapidly increases out of proportion. I am still too scared to try it b/c at this point I just wear an abdominal binder or a TENS unit and race up and down the aisles until there are very few in line or do pick up. If the symptoms become more frequent or intolerable and I decide to try it I will consult w/a cardiologist first. Let me know what happens if you try it.

[Jyoti]

8 minutes ago, htberg said:

My pulmonologist wants me to try it. My resting HR is 52 daytime and low 40s night time. My BP is also low 90/50

It does seem a little scary with RHR and BP as low as yours.  

I recently read an abstract of a study that found almost no bradycardia in Ivabradine users with low RHR but the study participants were not people with POTS or dysautonomia; rather those for whom the medication was originally intended--people with heart failure and stable angina.  Basically--Ivabradine reduces heart rate a good deal in those with high RHR and very little in those with low RHR.  I am still not clear at all on whether, then, it would lower STANDING heart rate for someone like you or me.  I am sure there is a way to logically understand this, but I have not yet wrapped my head around it.

From the abstract: "Thus, the magnitude of the HR-lowering effect of ivabradine was the highest in patients with sinus tachycardia at baseline and the least in those with the lowest baseline HR" and ...

"The incidence of bradycardia ,40 bpm was 0% and 0.5% in patients receiving two recommended treatment doses of 5 and 7.5 mg bd, respectively. Conclusion: The HR-lowering effect of ivabradine is determined by HR at baseline. This property accounts for a low incidence of severe bradycardia during therapy with ivabradine."

Unfortunately, I cannot copy the link to that abstract, but here is another bit by the same author: https://link.springer.com/article/10.2165/00002018-200831020-00001 

I am almost inclined to give it a  go at this point, but have not quite made up my mind.  Good luck to you as well!

[MikeO]

52 minutes ago, Jyoti said:

I recently read an abstract of a study that found almost no bradycardia in Ivabradine users with low RHR but the study participants were not people with POTS or dysautonomia; rather those for whom the medication was originally intended--people with heart failure and stable angina

Just like most of us finding what drugs work for us is hit and miss. I have read the latest study's with Ivabradine and seems compelling. But the FDA does contradict it with low RHR's. Sure there is a reason for that. I did start taking Ranolazine  for the heart failure/stable angina and it works well and does not affect my bp or HR.

I have read that  Ivabradine will reduce heart rates but so will beta blockers and calcium channel blockers. In my years i have not found any one drug that is a magical cure just what i can tolerate. so far Carvedilol has been the best. I will still get elevated HR's i do not the nasty palpitations that would normally come along with this.  

Just my 2 cents worth.

[Jyoti]

5 hours ago, MikeO said:

So far Carvedilol has been the best. I will still get elevated HR's i do not the nasty palpitations that would normally come along with this.  

That is great, @MikeO.  I agree--there is no silver bullet for any of us, and we are obliged to experiment and find the best combination of interventions for us personally.   Still..one does one's best to avoid the experiments likely to result in a worsening of daily life!  So your experience benefits me and I am grateful for that.

[Bergbrow]

I’ve used Ivrabadine which seemed to successfully kept my heart rate from erratically spiking.  I’m usually uncontrolled high HR/low BP (resting heart rate varies very low-high).  On Ivrabadine it’s one of the few times I actually could not FEEL my heart beating (heart rates were within normal person’s range though). I even kept checking my chest bc I’m so used to feeling and hearing the constant thumps.  But although I felt good heart-wise, I had a bad allergic reaction of itchy skin so bad i even would scratch all night, face especially.  My doc took me off of it after 2 months. I think it was working so I miss the positive I got from it. It did make me feel a little better than the other channel blockers but we couldn’t control the itching. Once I stopped the Ivrabadine the itching stopped, pounding returned.  He put me back on my old meds. 

[Jyoti]

@Bergbrow--doesn't that just suck?  Something that helps, but then ... the side effects!  And the itching sounds hellish, to be honest.  I guess this is part of the story for many of us: finding something that helps with one symptom and does not create a host of new ones.  I am really sorry that Ivabradine didn't work in the big picture for you, but I appreciate your letting me know your experience with it.

[JennKay]

@Jyoti ‐ I just met with an EP today that specializes in POTS/dysautonomia and it is so nice when you finally find clinicians who are understanding and get it! He also suggested I try ivabradine, a super low dose, to help with the elevated HR I experience overnight around 3am. I'm hesitant b/c my normal HR is usually in the 60-70s during the day and can drop to the 50s overnight. Will let you know if I get brave enough to try it! An undisturbed night's sleep would be amazing. I have tried metoprolol and atenolol in the past, both were too strong and gave me weird side effects. I mentioned this to the EP today and also mentioned that lately I've had to take a dose of atenolol here and there to help with random tachycardia. He said that propranolol might be better and also gave me a super low dose of that, which I will probably try before the ivabradine.

[MikeO]

On 3/29/2022 at 12:31 PM, Bergbrow said:

I had a bad allergic reaction of itchy skin so bad i even would scratch all night, face especially.

I can relate to this as well. Nothin worse than having Dysautonomia rearing its ugly head and pulling the carpet out from under you when one finally finds a med that is effective.