HCM - Symptoms and Treatment

[J102B]

Hello all

Only just joined because I want to reach out to someone. Feel like I’m hitting a brick wall.

So disclaimers, I have been overweight for most of my life and lifestyle could have been better. However, I was active, never ill and tried to lose some weight often.

I have had a diagnosis of HCM after an outpatients echo scan after 3 visits to A&E and being discharged with high blood pressure and being overweight, even though troponin was present and ECG readings indicating something wasn’t right.

Moving forward, I’ve had a manner of different treatments. Now on bisoperol and indapomide. My bp was under control on previous meds but not it’s shot up, not majorly but it is. I am in a stressful job (secondary teacher) which doesn’t help matters. They are now recommending I have a defibrillator pacemaker fitted.

I’m in near constant pain in my chest, aching in my arm and now experiencing neck pain. I have been checked out recently by doctors and they seem to think it’s all part of the condition. It’s mega frustrating. Some days I can be brilliant and walk for miles, some days I can’t even climb the stairs in my house without catching my breath. There just seems to be no rhyme or reason to when the pain comes.

I’m coming to the end of my wick with it all. I’m anxious and scared all the time yet when I mention this, it’s just dismissed. Is there anything that can be done for this? I don’t know if the anxiety is exacerbating it all. I am trying to lose the weight but it is hard, I admit my will power is shocking however food has always been my comfort when I’m down. I know the weight loss will help me in the long run. Right now, It’s no life for a 33 year old.

I’ve never actually spoken to anyone with HCM, or who has had a pacemaker fitted due to it. I’d love to chat and see what others have experienced. If anyone has any hints or tips, I’m willing to hear them or chat.

Thanks all

[devonian186]

First of all , lose weight if advised. What is your BMI and more importantly check your REAL waist size which might be vastly different to your trouser waist size. Excess fat round the waist is highly problematic.

Is it worth paying a private consultant to thoroughly check you out? .Someone coming frim a fresh perspective can give you an unbiased report and suggestions on the way forward. Having a pacemaker fitted at your age is bviously something to be avoided if there are other solutions.

[Captain_Birdseye]

I reckon you've hit the nail on the head already... losing any weight will have a positive impact on your heart rate, blood pressure, recovery and overall condition.

I'm 35 and have recently left a stressful job to give something else a go, but I've always been on the heavier side as well so just about to kick start a new 'lifestyle' in a couple of weeks. I've the staying power of a wet digestive biscuit so I feel more confident planning things out...

Plan so far.... remove temptation from the house. Plan every meal and buy food accordingly. Online shop where possible to avoid temptation. I'll be significantly reducing refined carbs and sugars.

The mind is a powerful thing, and you need to go into situations with the correct attitude. Saying I want to do something (lose weight) *but* there's something in the way(I've poor willpower)... you're already setting yourself up with reasons to fail your goal.

If you don't already, find a hobby where your hands are busy (especially if exercise is a struggle just now). Learn to cross stitch, paint or play an instrument. If you're kept busy, it's good for your mental health, and you're not going to be sitting wondering what to eat next (a favourite passtime of mine).

Good luck with it! I've found the forum to be very supportive so do keep coming back with questions and updates!

[Chappychap]

"I am trying to lose the weight but it is hard, I admit my will power is shocking however food has always been my comfort when I’m down. "

You absolutely gain our sympathy with comments like this, many of us have been there and understand what it's like. But unfortunately our sympathy won't help.

And heart disease has no sympathy at all.

Heart disease couldn't care less about our personal challenges. We either get to a healthy BMI or we don't. That's the only thing heart disease is interested in, healthy BMI or not. Yes or no.

Good luck!

[fishonabike]

i n addition to the comments above i wonder if you have been in touch with Cardiomyopathy UK? their support is more targeted towards people affected by different types of cardiomyopathy - like BHF they have lots of online resources, a helpline and i think they have local support networks too

something which stood out for me in your post was "Some days I can be brilliant and walk for miles, some days I can’t even climb the stairs in my house without catching my breath", this is something you may be able to change, but it will take persistance:

Your heart muscle is having problems so it does not work as well as it should and it takes longer to recover between activities. You may find that you get less pain if you can take on activities in shorter bursts with rest breaks and spread the activity over a longer period.

treat your heart's energy as a savings account with a steady but small, slow income ( you have been used to a much larger, faster income when your heart was ok)) - if you spend a lot on one day you have to wait for more income before you can spend as much again - if you overspend the overdraft charges are crippling - try to plan your expenditure so that it is spread and covers your needs, then you will have enough saved up for extras occasionally

this takes planning and takes time to show benefits, but at least you will be able to be consistent

[Hidden]

love the analogy!

[Xbowie]

I too have HCM diagnosed over 10 years ago. I was very sporty and it was only swollen ankles and a brilliant GP that led to my diagnosis. I still try to be as active as I can while recognising that I have to respect my body, if I feel tired I just stop and rest, Like you I have good & bad days but you just have to accept that is part of it. I got depressed & scared at first but realised it was up to me to improve my general health. I lost weight, gave up competetive sport and concentrated on walking, swimming & yoga. It has made a lot of difference, i feel quite good both physically & mentally and it has also helped me deal with other heart conditions that have recently been diagnosed. My message to you is iose weight and exercise regularly & safely, this will give your body & mind so much help in coping with HCM. Good luck.