Symptoms even with meds

[RaniNightOwl]

Hello again! I'm now in my fourth month with Corlanor (5 mg/2x day). For the most part it's been successful in bringing my heart rate down to 70s and 80s most of the time when I'm at rest, and keeping it reasonable (90s - 120s) when I'm being active. 

However, I'm still getting some adrenaline rushes and palpitations, as well as blood pressure that will suddenly spike and then immediately go down. My cardio is aware, and I've had the urine and blood tests for catecholamines and metanephrines. What I've been told is that Corlanor isn't a magic cure; it's just going to minimize symptoms but I still have IST. But the package inserts for Corlanor have all sorts of warnings about palpitations on the med, so I'm scared, which in turn is making things worse. Any reassurance would be helpful that this is par for the course. I have other health issues but dealing with this particular one is so new for me. 

[jklass44]

5 hours ago, RaniNightOwl said:

Hello again! I'm now in my fourth month with Corlanor (5 mg/2x day). For the most part it's been successful in bringing my heart rate down to 70s and 80s most of the time when I'm at rest, and keeping it reasonable (90s - 120s) when I'm being active. 

However, I'm still getting some adrenaline rushes and palpitations, as well as blood pressure that will suddenly spike and then immediately go down. My cardio is aware, and I've had the urine and blood tests for catecholamines and metanephrines. What I've been told is that Corlanor isn't a magic cure; it's just going to minimize symptoms but I still have IST. But the package inserts for Corlanor have all sorts of warnings about palpitations on the med, so I'm scared, which in turn is making things worse. Any reassurance would be helpful that this is par for the course. I have other health issues but dealing with this particular one is so new for me. 

I’ve been on Ivabradine since September and I must admit I’ve had a lot of trouble trying to regulate or find a good dose that works for me.

My cardiologist started me off at 5mg twice a day - like you - but I was extremely sensitive to it (my HR was consistently in the 30s and I felt like crap, extra palpitations, extreme fatigue, etc) so we backed down to 2.5mg twice a day. This was also a bit too much, so now I’m currently taking 2.5mg in the mornings only. This, however, is not enough and my HR spikes to 160s-170s again. So strange... I tend to have high blood pressure as well, so I take Clonidine for that. 

I’m going in for a recheck soon and hopefully get some guidance or new suggestions from my doc. One thing I will say is that I have very little chest pain on Ivabradine, and that was a huge symptom for me for years!! 

Sorry that I don’t have any good advice, just wanted to let you know that you’re not alone in this! It’s an interesting drug that’s for sure. If you find the cons are outweighing the pros, maybe head back to your doc and ask for something different?

[Pistol]

In my case I had to try many meds with varying results. Some I had to stop, some I had to increase over time. Sometimes one med would work but only for so long. Every time I would notice that my symptoms got worse again on the meds my doc would try another one. In the end I found a mix that works for me - but it took years. It was always a disappointment to me when a med stopped being effective. We just have to keep going back to the docs and let them finetune - and you are right: there is no magic cure. Our symptoms are constantly changing and our bodies always trying to adapt. Also - tachycardia is only ONE symptom - just because that is under control does not mean that the POTS is under control. Despite the meds I had to listen to my body and limit myself to my abilities ( which can change every day ). You have to find a happy medium between meds and adjusting your life.  --- What I am trying to say is this: even IF your HR is controlled you will still have issues that need to be addressed. My autonomic specialist does not concentrate just on the HR, BP etc - he treats each symptoms as it coms up. Fatigue, chest pain, brain fog, adrenaline rushes are each being treated individually. So - if the Corlanor only helps with the tachycardia then the other symptoms may have to be addressed separately. Sorry - this may not be great advice but it is how my doc and I got through this frustrating journey. I wish you well!!!!