dilated cardiomyopathy: I have been... - British Heart Fou...

British Heart Foundation
11,597 members7,119 posts

dilated cardiomyopathy

I have been diagnosed with possible early dilated cardiomyopathy with low-normal ventricular function and left ventricle dilation. I have history of persistent atrial flutter corrected with cardio version. Condition appears idiopathic and I am asymptomatic. BP normal, no diabetes, no alcoholism. Slightly overweight but fit. Run and gym 3x week. Should I take ACE inhibitors now to try and slow progression.

11 Replies
oldestnewest

Hi, have you looked at the Cardiomyopathy UK website or spoken with one of their nurses? The website is very helpful and the nurses are really good at listening, explaining and suggesting constructive ways forward. Hope all goes well for you in future.

2 likes
Reply

Hi pablojack, you sound in good shape, which will certainly help matters. In terms of ACE inhibitors, I think this is only a decision a cardiologist can make.

In my experience, taking an ACE inhibitor (and beta blocker) has actually helped remodel my heart such that my ejection fraction (how well the heart pumps) has gone from moderate disfunction to borderline normal. The dilation has also improved. The cardiologists put this down to the medication and me doing light-moderate gym work, 2-3 times a week. There's no reason from what you've written in your post why they couldn't also help you.

I agree with Shar28 about the Cardiomyopathy UK site. I guess you need to weigh up the pros and cons. The cons as I see them are that you may need a time of adjustment to the drugs (headaches and tiredness in my case, but this has now passed), and the potential for the ACE inhibitors to lower your blood pressure too much. The pros are that they have been proven to help most people.

Good luck with your decision.

1 like
Reply

Really good factual response pikaia. I guess I was waiting for confirmation of the diagnosis before resorting to medication. Also reluctant due to reported side effect of persistent cough. However, all that seems a bit silly now. Rather than wait until things get worse I am minded to go back to the cardiologist and take my meds. Thanks.

1 like
Reply

Hi Pablojack

I agree with Pikaia.

My ejection fraction rate has improved considerably with the drugs and moderate exercise - I take Rampiril and Bisoprolol and aim to do 10,000 steps s day plus a ten minute brisk walk, i am sure that without the drugs my progress would have been much slower.

Good luck with your recovery programme.

Ann

1 like
Reply

I have found a report on CHF by Life Extension Magazine dated 2003 that goes into detail regarding ACE plus using complementary medicine in the form of vitamins: B1 etc., amino acids: L-Carnitine, Taurine, etc., herbs: Hawthorn, Gingko etc.. Q10 etc. It is a very good read and I am taking all that is recommended and do feel that it is having a beneficial effect! I have taken some of those recommended in the past such as Q10, Gingko, magnesium etc., but having seen this report I am carrying out the advice given... I hope the information is useful!

Reply

Fore Life Extension Magazine see: Lifeextension.com

Reply

My ACE is Ramipril., but the Bisoprolol made me very bad. I am just recovering from it. I intend to stay just on the Ramipril and the complementary treatment and see how that goes for a while! Plus plenty of fruit and veg and reduce salt and fat! Only went on the drugs approximately 4 weeks ago!.

Reply

I’m on satins for dilated cardiomyopathy and been told I’m at greater risk because of the hole in my heart risk because in my heart. It’s just been found at 32.

Reply

Diagnosed with Dilated Cardiomyopathy in December of 2016,Heart Ejection Fraction was 30%,retested in May 2017 improved to 48%,tested again in July 2018,improved again to 55%.As earlier replies have rightly said your Cardiologist needs to assess your medication requirements .I was placed on 5mg bisoprolol ,5mg ramipril,10 mg ivabradine,40 mg furosemide and 20mg atorvastatin. Shortly after diagnosed with an under active thyroid ,being prescribed 150mg Levothyroxine .I was also told my Heart Condition was idiopathic, although the GP and a Neurology Consultant I saw on a separate matter feel it was related to the Thyroid. That aside I feel much better after being placed on medication,i have a better quality of life ,get tired ,but no where near as much as before .I walk a lot ,but pace my self. Good luck pablojack.

Reply

Thanks ollie.

I am now taking a beta blocker and an arb. Starting at low dose since I have bradycardia. After 10days my heart rate and blood pressure have returned to my "normal", 46bpm and 120/ 70. I remain without symptoms, gym 3x per week and now 183 lbs @ 5ft 10.5 inches.

Funnily enough I have never felt better. I will titrate the dosage of the drugs as advised and expect to maximise in 4 weeks. My objective is to achieve reverse remodelling of the left ventricle in one year. I understand that this would offer the best prognosis.

I very much appreciate all of the advice on this forum and i am consistently surprised by the variety of symptoms and prescriptions for this condition. I am encouraged that the sharing of this information will help to develop the best way of managing dilated cardiomyopathy.

Reply

Just an update on titrating bisoprolol and candesartan. On 1.25mg bis and 16mg candesartan. Plan was to increase to 32mg and. and then, perhaps, titrate bis carefully with regard to bradycardia. However latest blood test ( yesterday) showed raised potassium so have reduced cand. to 8 mg while waiting another blood test on Thursday. Still asymptomatic. Although described as idiopathic I think the dilation was very likely caused by atrial flutter and associated ectopics. Should have reacted quicker but again asymptomatic. I understand that tachycardia induced dilation can be reversible so hopefully the medication will help this process. I also follow the life extension protocol. My EF is borderline low with significant ventricular enlargement. No enlargement prior to flutter. Incidentally I am somewhat confused by the focus on EF when some reports suggest that ventricular volume should be the prime indicator in terms of prognosis. Only an observation.

I realise my condition may be less serious than some on this site but I feel that the sharing of information can be helpful to everyone.

Reply

You may also like...