Does anyone on here have hypertrophic cardiomyopathy apical? Or any experience with it? I’ve just found out that I may have this alone with myocarditis and I’m not sure I fully understand it. Are there treatment options?
Hypertrophic cardiomyopathy - British Heart Fou...
Hypertrophic cardiomyopathy
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Mills14
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9 Replies
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Good morning. It’s a huge shock when you’re diagnosed with a heart condition and it takes time to come to terms with it and what it means for you as an individual. My husband has a different form of cardiomyopathy but I’m sure there are people on here with HCM who will be along. In the meantime, have you discovered the charity cardiomyopathy UK? Their website and nurse helpline are brilliant. Here’s the linkcardiomyopathy.org
There are treatment options which vary according to your own circumstances. BHF and Cardiomyopathy UK websites are good places to look.
It’s natural to use the Internet for for information but be careful as there’s lots of out of date, useless and plain wrong info out there which can be really worrying and downright scary. But the good sources tend to be NHS, NICE, BHF, cardiomyopathy UK and university websites.
Feel free to shout out with questions, queries, news of your ups and downs, rants etc. We’re here for you.
Best wishes to you and your loved ones.
Hi Mills.
Shar28 is spot on in her earlier comments.
I have Hypertrophic Cardiomyopathy (with obstruction).
This was diagnosed here in the UK with a cardiac MRI, following having had 3 stents previously inserted (in an oversea's hospital in 2019) and yet was still having AF, angina and extreme breathlessness.
As I'm sure you are aware, there is no cure for HCM, purely management.
Upon formal diagnosis, you will be assessed for your risk from having a sudden cardiac arrest, and allocated a predictive score going forward 5 years at a time.
The management of your condition will be determined upon how your condition presents and the score from the SDS assessment.
Personally, I am managed in my current state, by a vast cocktail of what is, life-long medication.
That said, I was also made aware that should my condition deteriorate and the medications become less effective, I would be looking at having an ICD, or possible Ablation Surgery as a very last resort.
My care is managed by a specialty Genetic related Cardiology department at a highly rated Cardiology Hospital in Oxford.
Along with taking all the medication religiously, I have had to make healthy adjustments to my lifestyle, especially the management of stress and pacing my daily activities, to reduce physical over exertion.
Hope all works out well for you. Take care 🙂
This is really helpful. Thank you. Did you have strange ECG readings? I’m just waiting for this MRI tomorrow to confirm diagnosis and then let’s see what they say in terms of treatment.
Hi.That's the strange thing, I was always told my ECG were within an acceptable range 🙄 which I'm not sure I believe . . .
Hope all goes well tomorrow. Would like to know how you get on, if you have the time.
I have HCM as well. The reply above is a good one. Weight management is also key. Pacing yourself is key and it’s easier to do so when not carrying too many excessive pounds.
Thanks. I appreciate it. I’mTrying to lose a bit of weight to help with things. And waiting to see what they prescribe.
yes I have apical hypertrophic cardiomyopathy. It is rare. Good to meet you.
Hi. Apologies for very late response to your post. I was diagnosed with apical hypertrophic cardiomyopathy almost two years ago. It was picked up by my rheumatologist (I have SLE also) when she was listening to my heart and said I had a heart murmur. After ECG and MRI scan it was confirmed but it is non-obstructive. My consultant said it was normally hereditary but I can find no evidence of this in my family history; my siblings have all been checked and they are clear. I am being treated via beta blockers to keep heart rate down but there seems to be no real cure. Hope all goes well with you.
