Symptoms of mild Hypertrophic Cardiomyopathy: How do I manage them?

Posted by chrisvaz99 @chrisvaz99, Jan 31, 2023

Hey everyone, I am new to the group and am looking for more clarity in the symptoms I’ve been feeling for the last 2 years. I was diagnosed with mild Hypertrophic cardiomyopathy in 2020 following screenings prompted by the passing of my father in 2019 who died suddenly and was observed to have this condition on post Mortem. When I found out this condition was observed in me it did stifle me abit, more than anything because of the impact it would have on my exercise and fitness regime. With fitness and competitive sport being a big part of my identity it was very frustrating to be told “don’t push yourself to much”, “avoid weight training”. It took me a while to really accept this, and I don’t think I really have fully even now. With me being 23 now (21 when diagnosed) and feeling like I’d be entering my peak physical years it definitely was a tough pill to swallow. When I was diagnosed, I had felt certain symptoms, which were very manageable and were not constant (I put it more down to anxiety than anything). But in late September 2021 while away on a trip in Greece I found myself trying to almost “fix” the symptoms I was feeling because I still felt as though something wasn’t quite right. However, I’m doing this and I guess forcing my body to feel a certain way rather than just letting it be I ended up becoming stressed and anxious. One night while in bed and trying to “alleviate” these feelings I actually ended up seemingly making things worse. Ever since this moment I haven’t felt the same. There is a constant nature to my symptoms now. I feel a restriction in my chest and rib cage. I also have this constant tightness in my left shoulder in particular and feel this pressure on the left side of my face. It’s like I wake up expecting to feel refreshed and able to take a rejuvenating breathe but this just isn’t coming to fruition at the moment. I’ve had versions tests in the last couple of years…echo, stress echo, Holter monitor, 2 week Zio patch, MRI, perfusion MRI, X ray, blood test (TSH was elevated on 3 occasions). All in all the consultants and cardiologists I’ve seen have been reluctant to put me on medication at this stage because from their point of view my condition is very mild and thus the medication may actually make me feel worse (more lethargic) which is not what I want. I want to opposite to feel my usual vital self. Sorry for the long story, I appreciate people may be in a lot more challenging situations then myself, but I just desperately want to alleviate these symptoms as it’s restricting me from being my usual self. Any advice, thoughts or recommendations would be greatly appreciated 🙏🏼

Sending blessings to you all ❤️

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

Welcome @chrisvaz99. Being diagnosed with HCM in your 20s must've come as a blow. I'm also sorry that you lost your father at such a young age. While it's scary to have this diagnosis, you are now equipped with this information for your health. You're asking all the right questions. Allow me to tag a few members like @cynaburst @edkoch @karukgirl @lvon @angiev18 @ccubed @auntsuzie33 @melindaruiz @indigogirl @fitchizumi and more who have walked this path before you. They can offer useful feedback on the questions you ask about symptoms, managing your activity level, and when to start treatment.

In the meantime, you might also be interested in this related discussion that @oferb69 started here:
- HOCM Symptoms: Why are they starting now? What next? https://connect.mayoclinic.org/discussion/hocm-symptoms/

In your message, this phrase stood out for me: "I guess forcing my body to feel a certain way rather than just letting it be I ended up becoming stressed and anxious." It will take time to figure out your new normal. And I think members here can help. You don't want stress or anxiety to compound or confuse your symptoms. Do you do yoga or calming activities to help relieve the stress and anxiety so that you can separate them from the HCM symptoms?

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@colleenyoung

Welcome @chrisvaz99. Being diagnosed with HCM in your 20s must've come as a blow. I'm also sorry that you lost your father at such a young age. While it's scary to have this diagnosis, you are now equipped with this information for your health. You're asking all the right questions. Allow me to tag a few members like @cynaburst @edkoch @karukgirl @lvon @angiev18 @ccubed @auntsuzie33 @melindaruiz @indigogirl @fitchizumi and more who have walked this path before you. They can offer useful feedback on the questions you ask about symptoms, managing your activity level, and when to start treatment.

In the meantime, you might also be interested in this related discussion that @oferb69 started here:
- HOCM Symptoms: Why are they starting now? What next? https://connect.mayoclinic.org/discussion/hocm-symptoms/

In your message, this phrase stood out for me: "I guess forcing my body to feel a certain way rather than just letting it be I ended up becoming stressed and anxious." It will take time to figure out your new normal. And I think members here can help. You don't want stress or anxiety to compound or confuse your symptoms. Do you do yoga or calming activities to help relieve the stress and anxiety so that you can separate them from the HCM symptoms?

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Hi Colleen, thank you for your response and welcome. I have been doing Yoga for the last few months and it does help me relax, however even when I’m doing this I feel a restriction in my rib cage which prevents me from taking a full breathe (something which is quite important in yoga). Overall I don’t feel stressed at the present moment, however like I said I think after my diagnosis i spend quite abit of time worrying or trying to “fix” myself. It is just strange how I went from being pretty able to manage certain symptoms to them now be constant. I’m wondering whether it is actually down to this condition or whether there is some other kind of obstruction. I’ve thought about potential diaphragm issues as my alignment just feels off at the moment. Either way it is quite debilitating for me, especially when I’m around people and struggle to be my usual vibrant self. Does anyone else go through similar and experience sadness and frustration at not being able to do what they know they are capable of usually?

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