Dilated cardiomyopathy

[Jamie27]

Hi All,

So I was diagnosed around April 2018 with dilated cardiomyopathy and continue to have multiple days of chest, around a year ago I was seen in Wythenshaw Manchester Hospital and advised my condition had improved and was able to start sports again etc and which has been great and helped me stay a lot fitter however the chest pains consist and I have had this now continuously for the past 4 weeks and also feeling extremely lightheaded to the point of thinking I am going to pass out! Does anybody else have these experiences or is it a lot in the mind ? Having to take painkillers every day to try and stem the pain is draining

[Lowerfield_no_more]

Have you sought help from a health professional? If not at the very least you should be doing, in my view, is to arrange an urgent appointment with your GP or try your luck with 111. And if your symptoms suddenly worsen its a trip to A&E, but don't drive there.

[Jamie27 in reply to Lowerfield_no_more]

Hello!

Yes already had a trip upto A&E ecg normal bloods normal etc sent home as there is nothing else they could do other than tell me to keep an eye and if I get worse to come back for another 8 hour wait…. It just feels like I can’t win to be honest

[56dick19]

hi I have dilated cardiomyopathy and had a ICD fitted as I was nearly passing out and still get lightheaded if I stoop to do anything. I was diagnosed about 8 years ago

[Jamie27 in reply to 56dick19]

Hi how was the decision made for you to be fitted with an ICD ? I have been advised by my specialist they don’t want to go down that route yet as I am still quite young ?

[56dick19 in reply to Jamie27]

Hi I nearly passed out several times and had a really bad episode thought I was going to die it’s was fitted July 2017 it recently picked up that I had 28 AF episode in 9 hours that I hadn’t noticed most days I get a mild episode

[Petermagennis]

I had similar problems. Instead of starting some sort of fitness regime, i just started walking more, get a pedometer app and set yourself a modest total of day 4-5K a day. Increase that by 1K a week until you find a level you can cope with. My advice was stay active but living heavy weights was not a good idea, nor jogging/running. I also went to a traditional chinese medicine practioner. My dilated cardiomyopathy has now been downgraded to minor impairment and I've been discharged from the cardiac service. So start off easy and gradually work your way up.

[Scho1]

I’d get yourself checked out.

[DaveTR]

Hi,

I’m under the Manchester Heart Centre and have Dilated Cardiomyopathy too (21st anniversary this year).

I would certainly call the Heart Centre and let them know what you’re experiencing. I’ve always been told that if I’m experiencing chest pain to get myself to A&E.

I experience chest pains and light headedness when I’m in Ventricular Tachycardia. Sometimes this may be for just a few seconds (NSVT) and sometimes for prolonged periods (SVT). My consultant has recently adjusted my meds (Increase in Amiodarone) and adjusted the settings on my ICD to reduce occurrences. This change in treatment appears to be doing the trick.

I should say this is my experience and you may be experiencing something completely different. Either way you need to get this checked out by a professional ASAP.

[Elsabounre]

I would advise an echocardiogram as soon as you can do it..results will.be more conclusive