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Hypertrophic Cardiomyopathy

I was recently (two Months ago) diagnosed with a genetic heart mutation known as Cardiomyopathy. Over the last two years my life has gone from bad to worse due to unhealthy living conditions as well as unbelievable stress and anxiety (due to the living situation).
My health has deteriorated very fast and i am suffering from many physical symptoms such as:

- trouble breathing
- loss of feeling in many parts of my body. Many parts of my body are numb.
- Extremely rapid palpitations all the time. Similar to how your heart rate spikes when you have a fright? Well this is all the time! Even when i am trying ro relax or trying to sleep. Always on edge due to this.
- feeling of a tight chest or like a heavy weight is pressed on my chest.
- feeling of strangulation where my throat feels heavily compressed and airways feel closed.
- significant weight loss. Lost too much weight to where i believe i look unhealthy.
- swelling in my limbs (legs, feet, and at times my hands)
- blue fingertips and feet
- waking up literally drenched in sweat each night after falling asleep for just a couple of hours. Absolutely soaked.
- severe abdominal pain
- intolerance to almost every food. I get very unwell and have terrible symptoms after eating anything. First i thought it was histamine intolerance so i stopped eating basically everything with only a handful of options. But no matter what; i still get unwell after eating. I often feel drugged and very out of it after a meal.
- One of my worst "reactions", a very terrible feeling throughout the inside of my body which i can only explain as a "pointy" feeling all over my organs where it feels like there are millions of hot pins poking at every organ from the inside, throughout my body. At first, i took this for an extreme reaction due to presumed histamine intolerance. This usually took place when i thought i had eaten something i wasn't meant to eat.
- Mind fog and confusion are an on-going problem too.

These are just some symptoms i am dealing with. Amongst the worst, the fact that i cannot eat anything without worrying about getting unwell after is horrible. My skin disorder also flares up when i have particular reactions.
All this time i thought it was due to histamine intolerance or the very rare MAST cell activation syndrome.

Has anybody got any advice or tips for going through heart failure? Does anyone have eimilar issues with food intolerance? I'm still waiting for further testing while my symptoms get worse.
The severe and abnormal levels of stress i am under 24/7 is definitely having an impact on how bad things get. I am also living in an apartment with very bad ventilation.

  1. I'm so sorry to hear about the pain you're currently experiencing. I'm hopeful that someone(s) in our community will share their personal experiences. In the meantime, please know that you are not alone and we are here to support you the best we can. Wishing you a peaceful evening. - John M. (Heart-Failure.net Team)

    1. Hi. Thank you for posting your personal experience and how you are doing with us. And I see you received a great response from my colleague . I am also sorry that you are having to experience all of this. And I see above that you said you are waiting for test results, so may I assume properly that you are working with one or more doctors in your journey to get better? I also believe that allergists (immunologists) are the experts in treating mast cell cell activation syndrome and other similar disorders. Are you seeing this type of specialist? That said, we can offer some tips for going through heart failure. After all, that is what we are all about here. This (https://heart-failure.net/living/seven-tips) article may be a good place to start. Also, finding a good cardiologist is also helpful. Is this a type of doctor that you are currently seeing to help you with your heart failure? Just curious. John. heart-failure.net community moderator

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