My first post, Suspected Hypertrophic Cardiomyopathy

[Simonmonty]

My first post, Since I was 18, I am now 54 years old I have been suffering from palpitations and had seen my GP about it at the time about my concerns but he just sat there and laughed at me so I never went back, Over the years I have suffered various bad palpitations as I got older from missing heartbeats, slow heartbeat as well as very fast heartbeats that made me feel very unwell at the time. Over the last 6 years or more, I have been suffering from an aching sensation in my chest and feeling breathless and faint nearly passing out but when I had gone back to see other doctors they said there was nothing to worry about and could not find anything.

Over the last 2 years, I have had a persistent strange cough that will not go away and has also caused me to feel like I was losing consciousness for a few seconds, Last year it was really bad and felt like my entire body was straining to cough and my muscles in my chest and abdomen would go into full spasms every time I had these bad coughing fits until late last year while I was at work they called an ambulance and had me taken to hospital to get me checked out. They found out I had a heart murmur but said it might be normal for me but never investigated further.

This year I passed out at work through a bad coughing fit and again they sent me to hospital but this time they investigated further and sent me for an ECG and echocardiogram which showed up I have enlargement and hypertrophy of the main left chamber of the heart with thickening of the wall separating the left and right side of the heart and some evidence of increased flow which could be secondary to obstruction. One of my heart valves ( mitral ) also shows evidence of blood leakage backward through the valve.

The condition they are suspecting is Hypertrophic cardiomyopathy and said this could explain the episodes of fainting and syncope and need further investigations in order to confirm the diagnoses. I might also add I have throat cancer of the larynx for the second time in 9 years but I am having no treatment instead of trying natural therapy. CBD oil and Alkaline diet as well as cutting right back on sugars and other processed foods.

My question is what other tests might they do and what to expect if they confirm the diagnosis? .... Sorry for long post!

[Eyeballs]

Hi Simonmonty, welcome to the club! I’m 51 and was diagnosed with HOCM in December. In order to confirm my condition I had an Ultra Sound test. In order to confirm the extent of the diesease I had a further CT and MRI scan. When I had my MRI scan my consultant injected me with some dye and a drug to increase my heart rate. After the test they were able to accurately inform me of the damage. 50% of my heart has thicken and my left ventricle’s wall is 33mm thick. ‘Normally’ it should be approx. 10mm thick. I’m due to have an ICD implant, but I have been waiting since Jan 2018 for the Op. I am glad I have had all the tests, as it’s best to know what you can and can’t do.

Unfortunately I had to cancel my skiing holiday and at the moment not doing any exercise. I hate it as I’m a keen swimmer and cyclist. As a result I have put on loads of weight, which isn’t good when you have a heart condition....arrgghh!!!!!!

[Simonmonty in reply to Eyeballs]

Thanks for the reply at least now I have a better idea about what tests they will carry out

[clarehealsworldwide]

Hi, I was diagnosed with HCM + leaking mitral & aortic valves in November. There's a heart muscle charity called Cardiomyopathy UK which has helpful information. cardiomyopathy. org

My local group in York is having a meeting on 9 June. They or I can give you more info if you are nearby. There are several support groups across UK & online. Good luck. Clare

[Simonmonty in reply to clarehealsworldwide]

Thanks for the reply, I live in Hull and unfortunately, I'm working that day but will check out that group

[clarehealsworldwide in reply to Simonmonty]

The meeting is 2pm at Friends Meeting House. Friargate. York. Hugh Brazier is organising it. He has just started leading the group. If you give me your email he or i can write to you about it. Two speakers.