I’m 26 and I have muscular dystrophy and cardiomyopathy. I’ve had a bit of a rough patch recently when my meds were changed and before Christmas I had a bad episode where I was home alone, felt dizzy, had an erratic heart rate and called an ambulance. It was because I wasn’t tolerating bisoprolol! Anyway, I’m closely monitored and back on atenolol which has been increased to 100mg once a day. I still sometimes get some palpitations and feel a bit fluttery and it makes me feel quite scared when I’m on my own.
I wondered if anybody had any advice or just some comforting words to help me try and not feel so scared when it happens. I’m always going to have symptoms of some kind occasionally, I don’t want to spend my life scared!
My partner only works 20 minutes away, I’ve got friends dotted around that are 15 - 20 minutes away, so if I had a problem I am get at-able. I never used to be phased by these things until the incident back in December, I did really think I was going to die!
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Fullofheart98
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I had bisaprolol and had funny turn also I can’t tolerate it either I am on waiting list for icd but doctor put me on misaprol for now seems a lot better I had heart attack last year and stents put it but my left ventricle is only pumping at 36% now x you are only young and no wonder you are scared as I know that feeling x hope you get it sorted x take care x
I’m sorry to hear about your HA last year! I think you’re doing amazing and it’s really comforting to be able to hear stories likes yours and see you doing so well ☺️ Thank you, I really appreciate that. I’m definitely less scared than i was but I think it’s just going to take a bit more time to get that confidence back! Today is my first full day on my own at home while my partner is at work, so todays a big step in the right direction!
Completely understand, and you aren't alone in how you feel.I'd say just about everybody feels a loss of confidence and feel more sensitive or worried when symptoms turn up whether they are part of the heart issue or not.
It takes time to get your head around things and reduce how sensitive you feel or how worry tries to grab hold of you. But you will get there as the incident you experienced moves off into the past and you have day after day without the same problem.
Writing posts , or talking honestly and simply to friends and family about how your health event made you feel helps so you've already made one positive step writing this. Let people know you are still feeling a bit scared and unconfident, you know you'll get past that eventually but you may feel the need to take more care , be a bit slower and ask for a hand to hold from time to time.
Call people for a chat rather than texting either when you feel a bit anxious or not , not necessarily a chat about your health , a chat just for fun is distracting and those temporary symptoms often pass as we relax and are distracted.
You have just told us information that it will be helpful to say to yourself when you feel anxious.
You have family and friends really close that will come if you need them.
If something needs checking I can get help and be fine.
Distracting your mind from the worry is key.
If you have symptoms try relaxing mindfulness techniques like sitting and breathing exercises while clearing your mind of negative thoughts by thinking or visualising more positive things.
Distraction activities also help , do a puzzle , read , listen to music , and humming is a great distraction from overthinking, you cannot overthink while humming or singing according to psychology studies.
If you have no physical symptoms have a stroll , do a hobby or gentle physical activity that you enjoy, concentrating on a positive activity and telling the negative thoughts to push off trains your brain to get used to kicking the habit of worrying to the kerb.
This is called MCT.
It's actually been studied in cardiac patients whose recovery and health anxiety improved rapidly after using these techniques. It also helps reduce symptoms by upto a third in patients with Clinical Anxiety and Depression.
As time goes on , you will have a list of many times when you took relaxing steps to clear your mind and your symptoms stopped , as this grows you get more confidence.
You remind yourself , it's a symptom, it's temporary, I have solved it before I can solve it again. And if not I know I can get it solved very quickly.
Take care , give yourself time , you are getting there , hugs , Bee
Everything you’ve said there is so incredibly helpful! I really appreciate you taking the time to help, these are all steps I can easily take and will help me feel more relaxed!
MCT is called metacognitive therapy.It's slightly different to standard CBT although it's often an option to try if you get CBT therapy.
MCT helps you to learn different ways about thinking about why you worry rather than concentrating on what you are worrying about at the time. It teaches you ways to think about worrying or overthinking differently and actions to change in your thinking process so you can control the worrying process and let it pass, no matter what subject you are worrying about.
To be honest I know and have used CBT for years but it wasn't until I started researching MCT in relation to Health Anxiety recently that I discovered that it's been used really effectively over in Australia. I found a whole MCT workbook from back in 2016 which is very good, they've only just started using MCT for health anxiety in the UK . I think I'll put up a post sometime this week with the links . It is a good workbook for people to do at home while stuck on the waiting list for CBT or with their therapists/ doctors support.
If you are looking for help with anything specific but don't want to talk about it in the public forum feel free to send me a private message.Then I can send you suggestions or web pages / courses that are more relevant for you rather than just random things.
Much of the Mindfulness stuff that are popular online may be inspirational stories to read but they don't often have too much detail about the methods they try.
Thanks a lot. From time to time I feel that I might be suffering from health anxiety as everytime a get a different type of a chest pain I fear I might be getting a heart attack or if I get a pain somewhere else I keep thinking of a worse case scenario.
Sounds like both CBT and MCT would help then.Somebody mentioned doing the NHS Silvercloud Programme below, I always forget what it's called , but that would be worth you looking into and signing up for as well.
I think you might be able to Self Refer on to it.
The NHS Direct website has details and the phone numbers etc.
hello, do heart symptoms and MD run in your family?
It’s really difficult to not be anxious and worry, but it does not help at all. Keep busy at home with things you enjoy. It’s early days and you will get used to your new normal and make the best of it.
No, I’m the only one with either! My neuromuscular consultant said it was just a random mutation in me that caused the Muscular Dystrophy which in turn lead to the cardiomyopathy!
Thank you, I will try and keep busy and just relax!
I used to have palpitations quite a lot and they scared me, too.
The only thing I would add to the excellent advice you've already received is that palpitations are rarely anything to worry about. They can be brought on by simply thinking about them or too much coffee!
They usually pass quickly if you don't focus on them. I used to do breathing exercises when I got mine.
Of course, if you get chest pain or shortness of breath etc at the same time as the palpitations don't hesitate to seek medical advice.
I have 3 arrhythmia’s after a stemi and cardiac arrest over 3 years ago. PAF, none sustained ventricular tachycardia and SVT. In their current form there not going to kill me. I do now have generalised anxiety but not about my health 😂😂. I had counselling about 9 months after my heart attack which helped me get on with things and I’m on low dose sertraline for the anxiety as anxiety can exacerbate arrhythmias.
I get out of the house every day unless it’s a rest day which at times I need. I swim a lot, do aqua fit, Pilates, walk and play badminton. I do something active every day it’s good for my mental health.
I had terrible anxiety after my CA, almost every day I had some form of attack. The Cardio rehab nurse then pointed me in the direction of the NHS Silvercloud programme, it contains breathing, relaxation and meditation exercises to a background of audio. I didn't hold out much hope for that type of thing but was willing to give it a go, it was a bit of a revelation, it really helped me instantly.
I’ve not heard of that programme, I will do some research into it and give it a try! I’m willing to try anything that might help me feel more confident and relaxed about it all!
Thank you for your help - I have to say it’s very comforting to hear everybody’s stories on here and see how well everybody’s doing. I think a lot of the time you only hear the horror stories of a CA and don’t hear the good outcomes! So thank you for sharing your experience!
Yes the Silvercloud Programme is very good , I'm always forgetting what it's called when people ask about help for Anxiety , but it helps all sorts of mental health issues .Glad it helped you too ,take care , Bee
You're so young to be dealing with this, After my heart attack I was really scared to be left alone or to go anywhere on my own. It's very normal. If you are really worrying and don't want to bother your friends, you can always phone the cardiac nurses; phone number is on the BHF front page. They are lovely and will reassure you.
I was diagnosed with cardiomyopathy at age 12 and was told of my CA risk when I was 16 😅 it never used to scare me much, it’s more been recent incidents that have knocked my confidence! I can’t lie, I’ve had to grow up quite quickly to deal with my health but I try and just take it in my stride as best I can! I find it comforting being apart of groups like this and being able to chat openly about it all!
Thank you for your input, I’ll find the number and get in touch! Chatting to them might be helpful! ☺️
Call 0808 802 1234 (freephone). Our Helpline is open weekdays 9am to 5pm*. or email hearthelpline@bhf.org.uk and a cardiac nurse will get back to you as soon as possible.
I self referred online to NHS Talking Therapies and did a CBT based Mindfulness course which really helped me manage my health anxiety around my heart rhythm problem. You can get lots of meditation videos online which might help. Good luck and know you are not alone in how you feel.
hi fullo, try not to let the fear take over when you’re having flutters etc.( very easy said than done I know) Iv had them for decades and they are horrible I know, and can cause great alarm and anxiety. Have you had any heart investigations.? Echo etc.?
Yes, I do have a small blockage and have had for many years but overall my heart is okay! It’s the arrhythmias and ectopics that are my main problem they say. I do feel reassured that my heart is okay but it’s hard in the moment isn’t it when those symptoms are there!
The ectopics/ thumps and missed beats cause me more stress and anxiety than my AFIB to be honest.! Especially after a full week of them or two full weeks of them they can start getting me into a bit of a mental mess unfortunately.
I know what you mean, I’m the same! It’s the funny beats and rhythms that bother me more! I’m slowly learning to not get so scared though! Think it just takes time!
You’re rite, it’s time that eventually makes you realise things are not as scary as they were.? I spent a few years being petrified of dropping dead etc every time my ectopics kicked in.!! It didn’t matter how many doctors told me I’d be ok I just couldn’t believe them.!
But they were rite and life isn’t as bad it was now even though my ectopics still visit me.! 👍
I can 100% relate to that, that’s exactly how I have been feeling! Doesn’t matter how many times they tell me I’ll be okay, still worry about dropping dead!
I am slowly learning to not be scared though, this week alone I’ve come on heaps and bounds! This forum has also helped a lot!
I am really happy about that.👍 you’ll be ok and you’ll be even more ok as time goes on. We can’t let these bloody missed beats and ectopics drag us down.👍
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Just a moan !!!
Slightly concerned about cardiac symptoms today 
Getting my head around it all
Chest pain/aches
Feel stuck in a worried rut!
