Cardiomyopathy

[Fiona1989]

Hi everyone,

I am new here, been following people’s journeys since Feb and not yet commented.

I suffer from severe anxiety and heart palpitations. around 2 years ago we found out that my dad has heart failure, his mum had cardiomyopathy which runs through the family and also 2/3of his uncles have died from the same big heart attack and my dad is so far the only one to survive that heart attack. They said at 30 all his children should be tested. I turned 30 in jan and have been pushing for something and have only now been referred for an echocardiogram and awaiting an appointment.

I haven’t been feeling well most of this year strangely since my birthday and after blood tests was found to have very low iron levels so was put on ferrous sulfate 3 times a day. It gave me a boost to start but didn’t last long.

I do often get chest pains, what feels like my heart has a moment and beats funny and I get pains in my shoulder blade, through the middle of my chest which I’m told is acid/gastritis and also numbness, dizziness and I get out of breath easy. My doctor doesn’t seem concerned in anyway and has only referred me for peace of mind. My dad currently is 54 and has a ICD fitted. He’s recently had another op to do with some wires being fitted or something and they are now saying pace maker or heart transplant.

Can anyone please share any experience on this? I feel sad and worried at just 30 and also for my dad being just 54. I’m obviously a huge worrier with severe anxiety but can handle truth.

[Maisie2014]

Hello Fiona1989. Worrying about dad will be making you feel ill. Try not to worry. There’s one thing I’ve found on this site is it’s not all doom and gloom and people are really resilient. Your dad sound like he’s getting treatment and you’re being checked out. It’s amazing what the medical team can do these days and they’re improving all the time. I’ve outlived most of my predecessors and I’m sure so will your dad and you. Maybe relaxation exercises/meditation would be good for you. We’re all here for you.

[Fiona1989 in reply to Maisie2014]

Thanks so much, that’s very kind of you ☺️

I have an ECG next week and then to have echocardiogram so hopefully find out. I struggle with the unknown which my doctor knows and that’s why she’s sending me so that I can relax after I’ve seen the proof I’m okay 🙈 I’m terrible. Yes I do try to do that where possible, single mum and full time carer to my son who is high rate care needs so don’t always get to sleep or relax much but I do try. I’ve always been really well but this year since turning 30 it’s been non stop 😬 I need to take my dad’s “cool as a cucumber” approach.

That’s amazing you have outlived, so pleased. Thanks again for the support.

[Shar28]

Hello, It sounds like you’re going through a really tough time. It may be worth seeking some counselling to help you through it. Your GP should be able to refer you. Otherwise does your employer have an Employee Assistance Programme that you can access?

Best wishes.

[Fiona1989 in reply to Shar28]

Oh it’s just anxiety mainly because I don’t know 🙈 I’m awful for it. Once the ECG and echo is done I will settle im sure. Dad’s in the best hands with 5 cardiologists so that’s good. I think it’s more comforting when you know your being listened to as sometimes I feel the doctors always seem to put everything down to anxiety without checking. I’m not actually employed I’m full time carer to my son and also self employed working from home. I have referred myself for counselling in the past but I don’t drive and couldn’t get to the sessions and also couldn’t find childcare for my son for me to go but I’ve learned to manage a lot myself. Always health that is my main trigger annoyingly. My GP tells me I have “health anxiety” because both my parents are particularly poorly and being a parent myself I worry. Thanks so much for your kindness and support.

[Shar28 in reply to Fiona1989]

Oh dear! Doing things to look after ourselves isn’t easy sometimes is it! Is telephone counselling available in your area?

[Fiona1989 in reply to Shar28]

No sometimes not but I always remind myself there’s always people worse off. Yes it is but I didn’t find it helpful personally. I think once there’s answers either way that will really help. I worried more I think as I was told I would need testing but it wasn’t happening which I think is natural to worry isn’t it.

[Applezebra]

I have had health anxiety for about ten years, stemming from growing up with a mother in the medical field and a father who spent my whole childhood in the hospital from bad accidents and cancer. I have also recently had a heart attack with a couple of blocked arteries, so I now know the difference between anxiety and an actual heart issue. Believe me—you would know if you were having a heart attack. What you are feeling all the time is almost certainly the result of your anxiety. My health anxiety would do the same thing to me. It would make me feel like my heart was beating irregularly. Skipping beats or some beats stronger than others. It would cause tightness in my chest and shortness of breath. It causes all of those things. There have been days I was convinced I had cancer. Days I knew I had diabetes. Days I knew I was dying of “fill in the blank”. Resisting the anxiety and trying to make it “go away” never worked for me. I had to give in to it completely. Basically lay on my back in a dark room with my eyes closed and just let the anxiety do whatever it had to without fighting it one bit. Just experience it and trust it will be okay. Basically dare it to do its best number on me because I can handle it. Once I realized that the anxiety was doing everything it could, even without me putting up a fight, and that it couldn’t do any more, and that I could handle the feeling, it would then slowly start to dissipate. My shortness of breath would slowly go away. The weird electric feeling in my whole body would slowly fade. The act of fighting it is what allows it to stay around. It’s a vicious cycle that you can break. It isn’t easy but you can do it. Face it, don’t fight it.

[KateS24]

Hi Fiona, back in march I had a stroke age 34 very unexpected. During my time in hospital and investigations found I had a mini heart attack and a heart condition named takasubo cardiomyopathy, caused by stress . Prior to this I put all my heart palpitations down to anxiety and ignored it the docs did too …: so I would advise to carry on with investigations! And try not to stress it is the worst for the heart and they can treat any problems if they find any