Borderline cardiomyopathy

[Best2]

Hi everyone I’ve just got my results of cardiac mri scan today and they said I’m borderline cardiomyopathy! Suffering from ectopic beats please can anyone tell me if this is life threatening as I’m in such a state I feel so worried that’s It could be dangerous!! Being referred to an ep to discuss treatment please can anyone relate to this ???

[Hidden]

Hi, I have cardiomyopathy and it began as a borderline diagnosis too.

The good thing with a borderline one is that you are already on their radar right at the beginning of having the condition so you have a really good chance of receiving treatment as soon as you need it. The other thing is that you might not have it at all.

It can feel like you are in limbo which is mentally taxing. You have to try to manage all the 'what ifs'. I tried to keep logical and only worry about what I do know, not what I don't know.

Cardiomyopathy is very different for different people so other peoples experiences might be nothing like yours. I have a pretty normal life right now but have to restrict exercise and have MRIs to monitor my condition. It also depends on what kind of cardiomyopathy they are concerned about.

You could look up cardiomyopathy.org as they have great resources and the nurse help line can answer all your questions.

[Best2 in reply to Hidden]

Thankyou Shelf6 for you lovely reply that was really reassuring to hear ! I’m just so scared about what will happen next and finding it hard to get my head round things ! Do you have any treatment? The doctor said I may need cardiac ablation for the ectopic beats !

[Hidden in reply to Best2]

I'm just treated with bisoprolol currently, and have my annual MRI today! I think due to the kind of cardimyopathy I have, ablation is not recommended for the ectopic beats.

The MRI today will hopefully give me an idea of if it is progressing or stable at the moment.

It is a lot to take in but it sounds like you will have some treatment options, which is great.

Wishing you the best of luck with treatment.

[Best2 in reply to Hidden]

Thankyou so much for chatting to me ! I tried bisoprolol for 6 weeks and felt dreadful! Just couldn’t function on them waiting for a new prescription to come for a different beta blocker with less side effects! I really wish you all the best with your mri today hope all is well for you x

[HM24 in reply to Best2]

That is great news, that you can have cardiac ablation, that was my first question when I was diagnosed, but was told no because of area of heart affected. I take bisoprolol 1.25mg, (have to take really tiny dose because slow heart rate), but even the tiny dose stops most ectopic...until I have a glass of wine and then they boom away!! Stopped drinking wine now!

I remember feeling like you, and could think of nothing else and cried like I have never cried before, but you will get through it and life will get back to total normal again and you will realise there are much worse things you can have x

[Best2 in reply to HM24]

Thankyou I’m such a worrier and I know it’s hard not be feel anxious ! 1.5 mg of bisoprolol just knocked me off my feet !!! Hoping for better luck when I get the new meds !!

[GracieOS]

Hiya, firstly cardiomyopathy is a real broad spectrum, I was diagnosed with it nearly 3 years ago now, I already had pretty severe heart failure by then. I also have ectopics. The good news is I'm very significantly better now, the drugs have worked well for me. If yours is borderline its great its been picked up at this early stage. treatment, if you need it, is effective and best started early, unlike mine. I live very well with it, no symptoms anymore, and I plan to carry on like this 🙂. I take regular moderate exercise and watch what I eat, that together with the drugs is working well.

[Best2 in reply to GracieOS]

Hi Gracieos thankyou so much for your reply it’s so reassuring to know I’m not alone with this ! Need to pull myself together and get stronger mentally it’s such a shock as I’ve had ectopic beats for years and they have always said there nothing! I’m only 61 so not ready to die yet !!!

[GracieOS in reply to Best2]

Ive had ectopics for years too, and was also told they were nothing to worry about . I do wonder now though🤷‍♀️.

For me the mental health impact of the diagnosis was worse by far than any physical symptoms. Ive largely come to terms with it now but it was a struggle at the start.

[Best2 in reply to GracieOS]

Oh Gracie I’m exactly the same my head is spinning!!! I’m sure il get there one day at a time thankyou for your support x

[HM24]

There is lots of info on cardiomyopathy on bhf website. I have the full thing, and live totally normal life, go jogging most evenings. If you are borderline it may be you have slight thickening of heart muscle that could be caused by higher blood pressure.

It is one of those conditions that does not always get picked up, but better to know about it so they can keep an eye on you.

My Cardiologist told me 'in most cases we spot this in 80+ year olds on routine ECG when they come in for their hip replacement!

My biggest mistake was to read just about every piece of research and paper written on subject. Stick to the bhf and give them a call as they have specialist nurses you can talk to.

[Best2 in reply to HM24]

Thankyou for your reply I’m so pleased your doing well ! I have been googling last night till my head is hurting a lot of doom and gloom on there !! I’m going to think positive as I feel ok now hearing your positive replies good look and thanks again !

[HM24]

Just one other thing that may interest you, I found out via posts on this site, and read the research on them. Co-enzyme Q10. Some studies have reported 25% reduction in heart muscle thickening in patients with Hypertrophic cardiomyopathy. I buy them from tesco which seems to be cheapest option. Have not a clue if they have worked as still new to disease but study findings were too convincing to ignore!

[Best2 in reply to HM24]

Thankyou I have bought some of these and magnesium as well but I need to find out the f they interact with my aspirin no meds and statins !!