hypertrophic cardiomyopathy

[LadyB43]

hi peeps, I’m totally new to this site as I have been recently diagnosed with HC, I have been put on Ramipril once a day and seeing the cardiologist this week coming, I also have to have a 48 hour monitor fitted this week too, the palpitations are awful and come on so suddenly and make me feel so poorly and tired, is there anyone else in this same situation as me? Would love to hear from you

[kenster1]

been on them a couple of months now 10mg and regularly seeing the nurse for check ups for hypertension.

[bobby1290]

Hiya....Diagnosed same condition few yrs ago, appreciate feelings maybe pretty mixed just now. Good news is at least its been diagnosed and your are under regular checks to try to remove further risks.. Although i am on a different tablet, think some of the issues are similar. Best info will come from your specialist, few tips from myself, but appreciate everyone is different. Heart palpations can be a little scary, as we live hour lifes maybe not thinking about Heart until something goes wrong. On the tablets, your blood pressure will drop a little, so suggest if sitting for a while, or even getting up in morning, sit up a little first for a minute before getting up, will help to reduce any sudden drop in BPressure. Alcohol should be limited, as will reduce power of the tablets. If you use TIKTOK, i follow Angela Hartley (she is a cardiac nurse and has great advice and information). Excess Heat and Cold all affects your heart rate, plus if walking/Excercising decent warm up needed, to gradually raise yer HR...Best advice as i said will come from your Cardiologist, and try not to over worry, will be learning how to live with condition now,,,,Bobby 😀

[devonian186 in reply to bobby1290]

Can I endorse your comments about heat/cold plus warming up. I sometimes feel a bit off when starting my walk but liken it to an older car, which might splutter a bit at first, but when warmed up is pretty even and can accelerate without too many fits and starts.

Weather plays a huge part in our conditions, for instance low cloud and high humidity will likely impact. High humidity in the bedroom might affect quality of sleep.

[LadyB43 in reply to bobby1290]

thank you Bobby, that was all really helpful and informative advice, the sitting and standing thing is something that I suffer greatly with, I’ll be glad to get the monitor on for 48h this week to see what my heart rhythm is actually up to in there, thankfully I don’t smoke or drink alcohol either so that’s a bonus 😊

[Giannie]

I have been diagnosed with hypertensive cardiomyopathy for 24 years and I have been defibrillated for 10 yearsat first it doesn't seem like a panic but little by little you will find your rhythm in your life and everything will be fine.

it requires patience, faithfulness and a very good consultation with doctors who give you confidence.

look at each day to live it beautifully and far away... toxic people

[LadyB43 in reply to Giannie]

thank you Giannie, it was a shock diagnosis for me but not totally unexpected as my late father had a heart condition too x

[Giannie]

you are absolutely right at the beginning, it is shocking news...you will be caught up a bit by your ups and downs...and at some point the balance will come.for better or worse it happened to us...

Everything will be fine! have faith!

[LadyB43]

thank you for your kind words 🙏🏼

[Nannysue1]

Hello. I was diagnosed with hypertrophic cardiomyopathy 10yrs ago. I had a frightening time while away on Crete and ended up in hospital there. Not speaking any Greek it was all very scary. They looked after me very well but unable to fully explain what was going on due to gge language barrier.Once home it turned out that I'd had my first atrial fibrillation episode ( I'd never heard of it and unaware that I had a heart problem). I was 59 at the time.

Fast forward and put under a prominent cardiologist in london, turns out that I had hypertrophic cardiomyopathy and AF.

I had scans, MRI's, angiogram etc etc and they tested me for a gene as hypertrophic cardiomyopathy is commonly an inherited condition.

Neither of parents had heart problems and my 4 children were also tested and were all fine, thank god. I was an international swimmer once upon a time and trained ridiculously hard from a very young age. They think that this may have caused it.

Anyway they will want to make sure that this condition doesnt escalate and your heart walls dont thicken anymore.

I have an eco every year and in 10yrs there has been no more advancement.

It's a journey for sure and like you I was really scared as before I had always been so fit and well. They will want to make sure that your BP is kept in control and that your cholesterol is good.

To be fair the hypertrophic cardiomyopathy hasnt caused me much trouble.... cant say the same about the AF 🤪

As others have said, now that you have been diagnosed , you will be in good hands.

Look at YouTube and Dr Sanjay Gupta , a cardiologist from York hospital. He explains things in plain language.

Good luck Sue

[LadyB43 in reply to Nannysue1]

Hello Sue, my goodness you really have been through the mill with all this! Does your HC make you feel very tired and short of breath? I was once upon a time very fit and healthy, I used to be a runner and frequently spent time in the gym mainly doing cardio, but after my diagnosis of psoriatic arthritis 2 years ago and being on Methotrexate means I am not so able bodied as I once was, but fingers crossed with the right treatment I’ll be just fine x

[Nannysue1]

No to the hypertrophic cardiomyopathy making me tired and breathless but yrs to the atrial fibrillation and you might find that this is what is causing your palpitations?.Many people on here have had a much tougher time than me.

I'm sorted now have had the pace and ablate procedure ( bit of a last resort) but I feel as good as new now.