Hi allLast March my sister died and soon after I was having palpitations. These palpitations were so bad I thought my heart was going to rip through my clothes, seriously scary.
Going to GP I went through all the tests and they discovered I had mild to moderate valve regurtitation, an enlarged heart, high blood pressure and ectopic beats. I am now on bisoprolol 2.5mg and my bp is within the normal guidelines apart from the odd blip and like alot of people still get ectopic beats.
I do yoga, pilates and stretch classes and trying hard to chill and relax. I asked 3 health professionals weather I'm allowed to do any stronger exercises ( I used to run) and can I do any cardio or dance classes. I also asked why is my heart enlarged but nobody seems to know. I can't force answers out of health professionals if they don't know the answers but nonetheless its really disconcerting. Does anyone else have a enlarged heart? I'm waiting for another echocardiogram but I've already waited 5 months so I guess there is a long waiting list. If I don't exercise I'm going to put more weight on. Sorry for the long post x
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Hippiechic63
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Whilst you are waiting on some informed and knowledgeable information, Can I venture to suggest that you monitor your sleep. Without good sleep nothing else falls in to line.
And that you keep your weight down/have a decent diet.
Thank you Sooty, unfortunately I sleep so badly. I can't really blame bisoprolol too much as I've always been a sleep fidgeter, tossing and turning but bisoprolol has made it worse x
I took months to secure decent sleep. Hotter, cooler, early, late, lights on, new mattress and so on. The most helpful tip is to buy or borrow a tinnitus relaxer. It plays soothing sounds overlaid by white noise. Worked very well for me. Also reduced my night mares.
I paid £40 and it was worth the money ten times over.some surgeries have them to loan.
I’m incredibly sorry to hear about the passing of your sister. I can see that it hasn’t been easy for you since her passing as you’ve had Heath troubles since.
I’m not sure if you’ve had the chance to look yet, but below I have provided the link to the charity, Cardiomyopathy U.K. They also provide support groups and have a telephone number which you can call, I wonder if this would be of benefit to you?
In terms of the exercise and Bisoprolol, these are probably two things that you would need to query with your GP. If the Bisoprolol is affecting your sleep quite significantly, depending on how long you have been on it, it maybe worth seeing if there is an alternative beta-blocker. As Ageingfast said, sleep is also very important.
This is a helpful community and I know there are a few members who do have cardiomyopathy on here that may be able to assist you with your diagnosis.
Keep us updated with how your next appointment goes.
Thank you so very much. Its not been easy as in the middle of it all not only did I lose my dear sister but also was moving house.Everyone has been so supportive on here. Thank you I will look at the link x
I can imagine it’s been a really tough time and you’ve had to be very strong.
Due to your appointment still being a while away, I would also add that if your symptoms get worse before your appointment, such as you experience new chest pain, please call 111 or 999! I just hope you don’t have to wait much longer for your echo x
Dear You
A warm welcome to you to the forum , I hope it provides you support as it does me and many others .
So sorry to hear about the loss of your dear sister it must be a dreadful shock to you and your loved ones.
Enlarged Heart, is a bit like Heart Failure, is an old blanket term that is slowly being fazed out as younger staff take the reigns of this horrendous illness.
Yours will have a name, mine is Ischaemic DCM Cardiomyopathy now maybe you can see when they talk to us mere mortals that they use simpler terms.
You need to get back to your Cardiologist and find out exactly what is going on with your heart, saying that you just have an enlarged heart is now unexpectable.
What is interesting is that this only started happening after the death of your sister, have you heard of Takotsubo cardiomyopathy ? it truly is the "broken heart" of this illness and can be brought on by loss and stress.
Your journey is just starting and you need to take control and get answers.
Keep your loved ones close and talk, talk, talk, you are not alone and we are here to help in anyway we can.
Please take care and keep us informed { hope the move gos ok }
Hi BlueIronically, yes I have heard of Takotsubo....can you believe my sister had it !!!! ( that's not what she died of, she died of lung, liver and bone cancer. It was a 3 week turnaround and we were bombing it up the motorway to say goodbye but alas 45 minutes late...the hospital wouldn't let us in before that because of covid, which was not when it was prevalent...but I digress, sorry). So I asked the consultant was there a possibility I could have Takotsubo but he said it wasn't hereditary. That wasn't what I asked. I seemed to be getting nowhere.
Funny how you mention it and that's what my sister had.
Having an enlarged heart means that your heart was or is struggling to do its job, this could be because of your palpitations (which are now luckily under control), and your valve regurgitation.
Your heart condition must be absolutely managed and depending on which valve is leaking possibly you might need surgery to repair or replace it.
Please make sure you push for your scan to be done asap and to have a cardiologist to follow you. Heart disease can nowadays be managed very successfully with the right care and medications. Also, is your high blood pressure under control? This would also put a lot of pressure on your heart.
About exercise: I’ve always been encouraged to keep active as the heart is a muscle and is stronger if kept fit. That said, I would avoid high intensity activities until you have the full diagnosis and possibly have a stress test done to see how your heart is coping with more intense activities like running.
Of course walking , Pilates and yoga are always a great form of exercise.
you’re welcome, I’m glad you have found my message useful.
If I were you I’d push the gp to refer you to a cardiologist for a consultation so you will talk with a specialist not with a general practitioner who has a limited knowledge of something so complex like the heart.
I was born with heart problems and sometimes I feel I know more than my gp regarding cardiac issues 😉
Hi Hippiechick - welcome to the club that no-one ever hoped they'd be joining. I'm so sorry you lost your sister and hope you'll accept my deepest condolences. I lost my older brother and Mum within 6 months of each other two years ago and that also seems to be the time when my heart problems came to the fore. I'm sorry I can't help with your query but this is a very warm and welcoming forum and you'll find some very knowledgeable people who will hopefully be along to help soon. Carol
Oh I'm so sorry to hear about your mum and brother, I know what it's like tp lose family sp close together. My mum and dad passed away within 10 months of eachother. I was very young. My dad had 5 strokes and rheumatic fever when he was young so I guess it weakened his heart tenfold.It's strange that we both were diagnosed soon after our family passed away.
That must have been very hard, Hippiechic, to lose your Mum & Dad so close together and while you were young too. I think the effect of grief on us all, mentally and physically, is very much misunderstood. Blue1958 mentions Takotsubo Syndrome in the post above and, while I was in hospital waiting the bypass, a youngish girl was brought to our ward suffering with this after a bereavement. Thankfully, she was fine afterwards.
I am so sorry for your loss and your health problems afterwards.
I had myopericarditis very badly & and as a result have an enlarged heart. Cardio rehab staff suggested I keep my heart rate below 150 so it might be worth asking the question what max HR should you be mindful of.
I walk, ballroom dance & swim but can nolonger jog and manage inclines very well. I constantly watch my weight (usually via WW but currently following the Fast 800 which i like as an occasional boost).
Sleep continues to elude me but I know how important it it. I may try the tinnitus machine suggested earlier as not heard of that before.
To help with anxiety re waiting for apointments to ring & say you can do a short notice cancellation if you can. The BHF nurses on here are very good and will answer and questions too so do give them a call.
Keep talking to everyone on here, no question is silly ask ANYTHING this group is hugely supportive.
Hello. I’m so sorry about the passing of your sister. That’s a huge thing to deal with and on top of it you now have a heart condition to contend with. Be kind and gentle with yourself, don't expect too much as both take time to settle.
Good suggestions above re DCM and the charity cardiomyopathy uk. They have a nurse-run helpline which is fantastic. If you call them they’ll be able to guide you as to what questions to ask of your cardiologist so you get some answers about your condition, what it means for you and next steps.
Please, please don't google it until you know what to look at and even then be very careful as theres lots of outdated, inapplicable, wrong information out there. Stick to NHS, charity, NICE and hospital websites.
Well, I don’t know that I can help in anyway, but I can relate completely to your feelings about finding out that you have an enlarged heart.
Last March 2022, I had a Non-Stemi HA. At that time, the CT Scan mentioned that I had a nodule on my right upper lung. It was also mentioned that my heart was enlarged. Meanwhile, an x-ray stated that my heart appeared to be normal in size. No doctors seemed to note any of this—they never mentioned it to me. But the report did state that I should have a follow-up CT Scan to review the nodule within 3-6 months.
Flash forward over a year. I am still having breathing/breathlessness issues—probably my biggest complaint/concern. Now, I do have CAD and I have been diagnosed with general anxiety disorder, which can cause issues with breathing.
Anyway, I had a follow-up CT Scan on Wednesday. No changes in the nodule in over a year. It is about 6 mm X 6mm and they feel that is likely a lymph node. No follow-up needed. So, that is good news
But the report mentioned that I had stable cardiomegaly (enlarged heart) and an enlarged diameter pulmonary artery, which might be caused by pulmonary hypertension. Now, my GP missed this paragraph so I had to ask about whether that is a concern. Turns out now that she wants me to see another specialist about this. Honestly, I am worried about it all—just as you are. I know that an enlarged heart is a heart that has had some damage.
My guess is that you might want to discuss this finding with your doctor. It is probably always better to know what you are facing—although sometimes I wish that I could just bury my head in the sand and hide.
Best wishes to you as you work on getting your answers.
Can I add my condolences to you. You've had an awful time. I too lost my father young with a stroke - he 48, me 6 - I think these bereavements bring a lot of anxiety into our lives, which stays with us. You don't have full information, so talking to Cardiomyopathy UK would be a good start. They would have information about exercise. But can I also suggest thinking about seeing a cardiologist privately if you have the funds? You shouldn't have to do this I know, and I also know some people don't agree with private medicine, but faced with a long wait for your echo, with all the attendant anxiety, this might give you the chance to have a longer chat with someone who can give you valuable advice, as soon as next week. And as you are paying, you might feel more in control.
We don't have insurance, but we did this for my husband recently and it was £200 well spent. Armed with the information we gleaned, we could make sensible decisions and hurry things along.
You could even have an echo done privately. Some hospitals let you pay in instalments if that's an issue.
It would be nice to know how you get on. Best of luck.
Gosh you've been through the mill too, that's so sad. Way too young at 48, your poor mum too. Sending love and hugs.Was thinking about going private, it's wrong but m8ght well go for it x
Hi Hippiechic63 , I too have an enlarged heart & take ramipril to reduce the growth rate. My problem seems to be the sticking bicuspid aortic valve which allows blood to flow back into the heart. The next batch of oxygenated blood from the lungs then goes into the heart which has to expand to allow it.
In my experience the valve replacement is the only thing which will help me.
I'm so sorry for the loss of your lovely sister. This can't be an easy time for you and it doesn't help having the runaround from medics.
I can't add any more to the support you've had from the lovely people on this forum other than to say that my sister and me suffered with 'broken heart syndrome' following our Mum's death - angina symptoms, palpitations and arrhythmia - that was 35 years ago but neither of us had any follow up checks.
I hope things get better and you get some sort of explanation. It's the not knowing!
Hi again. No, we never had follow up scans. All my GP did was prescribe sleeping tablets!!!!
I hope everything goes well and I'm sure when you speak to your doctor, they'll want you to get exercising again. Good luck and I'm thinking of you. Lots of love and hugs. Jan xxxx
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