Way back in 2017 my POTS doctor advised me to try Ivabradine (Corlanor) for the first time. It wasn’t covered by my insurance at the time so I wasn’t able to try it. This year I finally managed to get my hands on some and it has made a huge difference in my activity levels. It was still hard to get, even 7 years later. My insurance agreed to cover it but my copay was going to be $571 a month, which was too much. Instead I’m ordering it from a Canadian company and having it shipped to me in 3 month increments. It’s a much more round about process but it works.
Since 2022 when I had my last big POTS crash I’ve been slowly working my way back up to a normal level of activity. In 2022 I was almost completely couch bound. In the past two years through a pool exercise program and some other medication adjustments I managed to work up to maybe 2 hours of activity a day, spaced out with plenty of rest times in between. Then in May I started taking Ivabradine instead of a Beta Blocker. Beta Blockers are used for POTS to lower heart rate but they also lower blood pressure (which is bad for POTS). Ivabradine only lowers heart rate without affecting blood pressure. It’s the first choice of most POTS doctors if their patients can get it but it’s pretty expensive in the US.
I was nervous to start it since my Beta Blocker helped with my anxiety symptoms. The assumption was that the Ivabradine would help with those as well but you can never really know until you try it. I had to wean off the Beta Blocker for several days before I started the Ivabradine and in that time my anxiety and POTS symptoms were much worse than normal. It took about a week before I could tell the new meds were helping, at least as much as the old meds. Then as time went on and I was on the Ivabradine longer it became clear that they were helping much more than the Beta Blockers ever did.
So far I’d say that my activity level has at least doubled since starting Ivabradine. I still need to pace myself and take breaks but I’m recovering easier and doing more in an average day than I’ve been able to do for over 2 years. This happened so quickly and dramatically that at one point I started getting blisters on my toes from moving around so much more after 2 years of relatively low activity. My exercise program in the pool is progressing much faster than it has been. For instance, I beat my 2 year record for cardio recently. Usually it takes so long to build up to more exercise that a major set back hits before I get very far. But now I’m increasing my exercise much more quickly.
I’m on the lower of two doses right now and even so my resting heart rate has gone down by about 15-20 beats per minute. For over two years I was making very slow progress, it felt like I was crawling forward. Now I feel like I’m walking forward. I don’t know how much better I will get but I’m hopeful for the future. I wanted to share my experience so far since it’s been an exciting time for me.
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