1. < Hypertrophic Cardiomyopathy (HCM)

Diltiazem

Posted by mmicahk @mmicahk, May 5 10:38am

I've been slowly having fatigue for a few years now, but the last year it has been getting worse.

I was diagnosed with obstructive HCM a year ago and started metoprolol back in November 2024 after an incident of sepsis in the hospital. My fatigue was getting worse since then, so my cardiologist had me back off to half my dose in February after seeing my resting heart rate is between 40-50bpm.

The fatigue hasn't gotten better so he wants me to stop taking metoprolol and see if the fatigue goes away. He said if it does, the backup would be Diltiazem to try next.

Has anyone had this medication and/or gone through this process of trying different medications?

I have some angina, but mostly just fatigue (which could be related to anything). My heart rate has been weirdly all over the place lately. It was fairly low/stable from November through March and then started getting weird the last month. Simple task of getting up to walk to the fridge could go from a 50bpm to 120bpm. No dizziness but feel my heart racing so I check.

My cardiologist is local to me, but I'll be seeing a second opinion in June in a more specialized heart center at Kaiser (Santa Clara) with a cardiologist that was at Stanford's HCM center.

Part of me is wondering if I just wait to make any changes until then but I had not heard of this medication so was wondering of others experience.

Interested in more discussions like this? Go to the Hypertrophic Cardiomyopathy (HCM) Support Group.

boatsforlife | @boatsforlife | 3 days ago
In reply to @jmr091805 "The fact that you can be away for 3 weeks is something HOCM and Camzyos have..." + (show)
@jmr091805

The fact that you can be away for 3 weeks is something HOCM and Camzyos have prevented me from doing. Getting the echocardiogram for the Accredo Pharmacy to agree to deliver the next 30 pills each month so that I don't run out of my daily Camzyos pills has prevented me from being away for that long. How do you coordinate this?

Jump to this post

I've been on Camzyos for over 18 months now and my dosage has been stable for a long time, so maybe that's part of it. I suspect another reason is that I'm in Canada, and our system seems quite different from the US (which is where I assume you are located). I have a very good insurance policy and have had incredibly good support from my insurance company, the pharmacy, the manufacturer, my nurse-case-manager, and my cardiologist right from day 1. My wife and I went on a SIX week camping trip last year, and a single phone call resulted in them providing a one time (once per year maybe??) 30-day supply to ensure that I would not run out. Now that my dosage has stabilized, I'm getting echo tests every 3 months so we just had to schedule around that. As I said though, I'm so grateful for the support and cooperation I've encountered. It saddens me to hear the struggles so many people have had trying to get their regular monthly supply.

REPLY
susanml | @susanml | 2 days ago
In reply to @marigold13 "Susanml, How are your symptoms taking Diltiazen (Cardizem) and Candesartan? My doc is wanting to put..." + (show)
@marigold13

Susanml, How are your symptoms taking Diltiazen (Cardizem) and Candesartan? My doc is wanting to put me on a BP med since taking me off Metoprolol my BP has gone up too high 170s and 180s. I see Boats4life is on Cardizem, too, and no side effects. Side effects are what I'm worried about. I'm on 5mg Camzyos since Monday. I'm getting some symptoms of SOB, light headed woozy feelings, and they seem to go away in the evening. But I'm wondering if my BP is contributing- the Metoprolol kept me in the 145/150 area which isn't the greatest but not as worrisome as BP now. There were moments where I could feel Camzyos was giving me a positive effect, but as it builds up in my system, I feel like symptoms are getting worse and can't differentiate between Camzyos or high BP.

Jump to this post

I’ve had no adverse effects on diltiazen and candesartan ( 24mg) though I can sleep like a log for 10 + hours. Not sure if that’s a symptom of the drugs or that I just like to sleep! My BP is about 140-150. Bit high I know but when candesartan is increased then it goes too far down. Happy on the 5mg of Camzyos. I too wish I understood the correlation between HCM and BP. Best wishes

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