1. < Heart & Blood Health

Anyone have input on living with symptoms from cardiomyopathy?

Posted by retirement75 @retirement75, Apr 14, 2022

Does anyone have input on living with symptoms from cardiomyopathy, I.e., shortness of breath, angina and heart arrhythmia. Other than meds, it’s a challenge to mentally accept and live with this.

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lakeview | @lakeview | Dec 6 1:36pm
In reply to @manuelpo "I am a very weak old 64 years old man. Before I started Camzyos to treat..." + (show)
@manuelpo

I am a very weak old 64 years old man. Before I started Camzyos to treat my HOCM, I had chest pain and shortness of breath while walking specially after any meal. I put in my mind there will not be any side effects. I started Camzyos last end of March and all chest pain is gone in only 2 days of taking that medicine. At the beginning I had very mild dizziness but my body got adjusted now I have no dizziness or any side effect. I am jogging, walking very fast, having almost a normal life thanks to Camzyos. I will keep taking Camzyos till the Cardiologist ask me to stop it. This is my experience and I hope it helps. Good luck to you and I hope you get better soon!

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Thank you for your information, I am so happy the Camzyos are working for you, I am still skeptical about starting them….Lakeview

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katiekins | @katiekins | Dec 6 11:18pm

Brilliant so pleased for you. It didn’t work for me good luck for the future..

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deniseheart | @deniseheart | Dec 7 12:33pm
In reply to @lakeview "Saw my cardiologist today, 12-4-24 to go over blood work results, which I take every 3..." + (show)
@lakeview

Saw my cardiologist today, 12-4-24 to go over blood work results, which I take every 3 months (nothing ever changes), I was told today by my Cardiologist if I don’t want to take camzyos with the side effects of death then I just have to suffer with shortness of breath…..I can’t walk more than 30 feet with out getting shortness of breath….In the house I walk very slowly and stop very often….if I leave the house I have to be in a wheelchair…..does anyone have these problems, please let me know what you have done…. Thank you in advance. MMB

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have you heard of Barostim?

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1 reply
lakeview | @lakeview | Dec 8 9:38am
In reply to @deniseheart "have you heard of Barostim?" + (show)
@deniseheart

have you heard of Barostim?

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No I have not heard of Barostim

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jhsnell | @jhsnell | 6 days ago

I have had 5 blackout episodes in 2 years due to my HCM. 4 while walking and 1 on my bicycle. Many injuries and broken bones each time because I have no warning. Anybody have any suggestions for help in preventing these?

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1 reply
manuelpo | @manuelpo | 6 days ago
In reply to @jhsnell "I have had 5 blackout episodes in 2 years due to my HCM. 4 while walking..." + (show)
@jhsnell

I have had 5 blackout episodes in 2 years due to my HCM. 4 while walking and 1 on my bicycle. Many injuries and broken bones each time because I have no warning. Anybody have any suggestions for help in preventing these?

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Talk to a Cardiologist specialist in HCM to treat it. Ask him if Camzyos is an option for it solved my heart issues. I

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whidbey | @whidbey | 6 days ago

I was diagnosed with Hypertrophic Cardiomyopathy at age 53. My cardiologist had me taking me taking Disopyramide for mitral valve regurgitation and increased it with my new diagnosis which helped a little. It wasn't until I began taking Camzyos a year and a half ago that I began to experience improvement in my everyday life. I was unable to walk up a hill without stopping many times, climb stairs, do anything physically at all after eating and after a few months on Camzyos, I began telling people it changed my life. I am a teacher and didn't know how much I was "slugging" through life. I have so much energy now and can walk, take stairs, and be much more active than pre Camzyos.

I have learned that eating small amounts of food , hydrating, and pacing myself is important to live my best life. I am a purposeful water drinker, but didn't know that hydration is more effective with the addition of a daily concoction of 1 fresh squeezed orange, half a lemon, a few flakes of high quality sea salt, and a teaspoon of honey. I drink at 6 glasses of warm or cold water per day, herbal tea, and one homemade hydration drink per day. This really helps how my heart feels. You can research homemade hydration drinks to your liking. (most have lemon, sea salt, honey or maple syrup in them)

Daily outings in nature....even if it is just a walk down your street, are very important for your mind and body. I think intentional, little changes improve your spirit and outlook on your life. I have found the MAYO clinic blogs to be super helpful for learning and being encouraged. As a matter of fact, I intentionally give input on people's questions such as I am doing right now to give encouragement to others since I have found encouragement here myself! JOY!

"Talk to yourself like you would to someone you love." Brene Brown

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souravroy1997 | @souravroy1997 | 1 day ago
In reply to @karukgirl "Hello @souravroy1997, and welcome to Mayo Clinic Connect. Gosh, I am so sorry to hear you..." + (show)
@karukgirl

Hello @souravroy1997, and welcome to Mayo Clinic Connect.
Gosh, I am so sorry to hear you have HCM and now so many other problems, at any age, but especially so young.
Is your cardiologist in India knowledgeable about HCM? It is important that they are because there isn't really a cure for HCM, as in most cases it is likely genetic. It is important, too, that your cardiologist is familiar with this because there are things like medications that can help the symptoms.
Does anyone else in your family have this condition? Are you able to seek a second opinion somewhere else? The Mayo Clinic in Rochester, MN is the world's leading expert in HCM and see patients from all over the world. Would this be a consideration for you?

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Sorry for Late reply. Many in the family have heart problems, my mother had a pacemaker implanted, my elder brother had heart valve surgery at age seven, I had a septal ablation in 2020 and an ICD implanted in 2024. Because of this I am very mentally broken. But we are not in that financial condition to go outside for treatment.Currently I am taking sotalar 40 and anxiety tablets regularly. But it is very difficult to walk and I have a slight limp

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