Recurrent Myocarditis, 36yo male, anyone else suffering from this?

[HenreyB]

Hello, so long story short, since 2020 I have been plagued with a mysterious illness that keeps coming back.Initially, my GP diagnosed me with Asthma, however it didn't explain my chest pains and fatigue, then towards the end of 2020 I was admitted into hospital for a few days and told I had a bout of Myocarditis.

After a few months this cleared up, it was never followed up with an MRI and Cardiologist took me off the books. However, I repeatedly kept suffering from shortness of breath, couldn't shake colds and with these symptoms came fatigue. Was told it was likely my adult onset asthma being poorly controlled, even though I'd never felt like pumps did anything to relieve my SOB and my peak flow barely changed.

Over the last following years this just continued, until I had a severe bout last year in April and eventually had to go to hospital, where I was admitted with Myocarditis for three days in the Bristol Heart Institute. By the point my heart rate was all over the place, jumping to 110+ if I stood or walked around, and upwards of 140+ with mild activity.

Finally, after three years of these symptoms coming and going, I was given my first MRI. Which found scaring on my heart and that my EV was boarding on mild heart failure. I was given a load of medication and sent home.

Since then I've had two more mild bouts, currently weathering one now. Have not been able to get hold of cardiologist and my follow up appointment and tests were all due 3 months after my last appointment, so around Dec last year.

Basically, is anyone else suffering from repeat bouts of Myocarditis? And am I the only one being ignored or forgotten by the NHS cardiologists?

I became a father two a little less than two years ago and going through this is terrifying, need to be there for my son.

[Larneybuds]

Good morning....so sorry to hear about the problems you've had in being diagnosed and the back up treatment. Contact PALS at the hospital....phone and explain your situation and about the lack of follow up. They are mostly usually pretty good at following things up or getting answers . Other than that I think I might consider talking to your GP to ask about a reference to a different hospital as you have little faith in the one you are under at the moment. I believe in most areas you are now allowed to go to a hospital of choice. Don't be frightened to be persistent and insistent.....this isnt a cold or sore throat it's your heart and unfortunately, in what seems the norm lately, appointments and follow ups are all over the place so sometimes you need to be more assertive about things. I hope you get some answers and action sooner rather than later. Take care x

[honeybubs]

sorry to hear you are unwell. I was admitted to hospital last year and mri showed pericarditis and myocarditis I had already been diagnosed with heart failure EF35. They tweaked my medication and monitored me for a week as I was also having over the top ectopics so I had a CRT-D fitted a couple of months later. They just said rest and it will take months for the heart inflammation to go down but I’ve had no check ups since so I have wondered if it’s gone completely as there is no way of knowing except for feeling drained and I was getting random sharp pains at the time which I don’t get now but I do get tired and feel lightheaded on occasions. I am seeing my cardiologist next month privately so I’m going to ask certain questions about it to see what he says. Good luck and pester them to get answers. It’s difficult for you with you working and having a young family there mustn’t be much time to rest. Let us know how you get on.

[fishonabike]

i am sorry to hear that you are going through this

unfortunately Myocarditis is not a common condition and can be hard to diagnose - the main treattmen, as you probably know by now, is rest (not very helpful!)

there are other posts in this group about myocarditis, with info about the Myocarditis Foundation - if not treated properly Myocarditis can recur

....... but recurrent Myocarditis can be the result of a rare genetically transmitted condition, linked to eastern mediterranean heritage - if you think this might be an issue for you send me a private message as i could get more info for you

[Jeremyrunicles]

Hi henrey,

I was 45, two little kids and my own businesses to run when mine happened

To maybe give you some hope, once my condition was recognised, after months of being poorly, the nhs have been amazing for me. So keep pursuing them.

I was also told asthma, then chest infection, then heart faliure on my 4 visit to the Dr. It was a junior doctor who spotted it. My main symptoms were of heaet faliure. How they missed it is amazing. I've yet to complain. I have been focusing my efforts on getting better. I have to for my children.

If you ask the correct questions on here, you will get some great feed back.

Lest feb I was in hospital for two weeks with myocarditis which lead to severe hf, with EF 24%, dilated cardiomyopathy,, severe mitral valve regurgitation, and left bundle branch block.

I was sent to Papworth for a pre transplant assessment back in April. That was worrying. I'm fit, healthy and used to run half marathons. Don't smoke, not over weight so a complete shock.

They said I should have died snowboarding in Canada just over a year ago. They were not sure how I'd made it back from minus 30° snow and the altitude while doing extreme sports

Anyway, a year on, I am back up to 40-44% EF, my mitral valve has all but closed up and my bundle branch block has gone.

So. Big improvement. But still moderate HF and I'm looking at another year at least of trying to get better still.

I have reduced salt down to 2 grams a day max, walk everywhere as long as i feel OK. Usually 5 miles a day ( I walk after the kids are in bed if I don't do enough in the day).

I have also made sure I eat a heart healthy diet where possible.

I have been resting as much as I can. I'm usually in bed by 9pm.

There are are also some supplements you can take. L carnitine. Taurine, and ubiquinol. These are heart specific. There is also a new one recommended by a nutritionist called cardio miracle which I've started taking recently.

Basically, you have to stay positive, that's the biggest thing. Once you are over the initial shock you have to stay focused on getting better. And it's a long recovery for some, so hang on in there.

If you smoke, give up, if you are over weight, try and lose weight as this puts an extra strain on your heart. And only drink the recommended 14 units a week, but have 4 days off alcohol each week.

I was also put on fluid restrictions. Just 1.5 liters a day tonsrat with, that includes soup. Ice cream, yoghurt etc. I'm now on 2 litres and will be for a while.

Yours doesn't sound as bad as mine was, but we are all different. So just monitor your self closely bp, weight, breathlessness any swelling of ankles. Report anything put the ordinary to your docs.

[Bahamasgirl]

Hello, sorry to hear you’re suffering with chronic myocarditis. There’s not much help out there but I found an excellent book that has helped me a lot. You might find it useful? It’s by Kayte Alexander and available on her website. My best wishes to you.