Myocarditis: Hi. I spent a week in... - British Heart Fou...

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Myocarditis

Sunshine1984
Sunshine1984

Hi.

I spent a week in hospital following dizziness, fainting and chest pains.

I was treated for a heart attack, then pulmonary embolism and after lots of blood tests, ECGs, x-ray, VQ scan and CT I was discharged with a diagnosis of myocarditis and bilateral hilar lymphadenopathy.

I've left with an appointment for 7 weeks time with Respiratory team for an mri but I understand that's to investigate the enlarged lymph glands in my chest, and 0 information about the myocarditis. No medication aside from pain relief.

My questions are:

How long will i need off work?

Shouldn't there be some form of treatment for the myocarditis? I feel like they're just focused on the lymph nodes but I'm panicked about my heart!

Expected recovery time?

If anyone can offer any insight it would be grand.

Thanks

10 Replies
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Myocarditis is where the body’s immune system has a pop at the heart and the heart muscle becomes inflamed. Ibuprofen or other NSAIDS are the baseline treatment. If they’ve sent you home I assume you’ve no heart failure? (Ie heart damage/functional reduction) mine took 7 months to go but I know that was unusual. The normal advice is from 2 weeks to a couple of months - it really can vary. I’m sorry I’m not sure about the other issues. That’s only from my experience and I was lucky to have only a small amount of damage and mine healed x

PS the lack of info is not uncommon! BHF (British heart foundation) have a phone number where you can speak to a specialist cardiac nurse and they’re very helpful

Forget about work for a while. Trying to rush back will just stress you out. I had my heart attack in April and hope to be back on light duties in October. I have 4 stents pending. The problem you'll find is that there is no financial safety net anymore. A big thank you to our governments for that one...

tracyball1
tracyball1 in reply to Snoweybm

Hi Snowey it's terrible isn't it that you work all your life and then you can't get financial help when you need it, have you tried applying for PIP you should really be awarded it with having heart problems xx

Hi Sunshine1984,

I have Myocarditis and was diagnosed in December 2016. One person who has Myocarditis can suffer from different symptoms to the next. As Snoyeybm mentioned NSAIDs are the main treatment for it. I was given Ibuprofen and Colchicine to be taken daily along with paracetamol pain killer. After a couple of years of taking the NSAIDs I felt this wasn't working and was then put on a short course of Steroids. All of the medication I was given only worked some of the time but has not got rid of my chest pain on a long term basis. The main symptom I suffer from is chest pain which still hasn't gone and this will be 3 years in December. I also have an inability to do exercise such as running, walking up say 10 flights of stairs fast, weights etc which has been incredibly frustrating for me as I have always been a very active person. I have got used to it now but still hope it will go away completely one day. Myocarditis is variable. Some people's Myocarditis doesn't improve, other people's symptoms improve but do not get rid of the condition completely and others make a fully recovery. There are things you can do to help such as making sure you get a good sleep every night, reduce stress levels and eat a healthy diet which can reduce symptoms. Your Cardiologist will be able to advise you on what's the best approach for you to take.

I would book a tenner (ten minute consult) with the GP and ask what may have caused it (viral, bacterial, what), when to expect recovery (and how to encourage good recovery), and why you're not being followed by cardiology for it.

PS - Dr Google is not a good source of reliable information unless the only links you click are ones to the BHF, NHS, and some American sites that will come up when you Google like the Mayo Clinic, Cleveland Clinic, Harvard Med, and the American Heart Foundation. The rest will scare (and scar :) ) you blind with 'information' best described as harrowing-snake oil stuff-erroneous-over the top.

Hi Sunshine! unfortunately there are no hold and fast rules with myocarditis, each case is very individual. It can depend on how severely you had it, any complicstions, what caused it etc From scan and ECG results your cardiologust and GP SHOULD be able to advise! Im nearly 2 years and still recovering and have now taken early retirement from teaching but enjoying very part time outdoors teaching like Forest School - it feels so much more healthy & good for my soul lol. My cardiologist has ‘suggested’ I could be 2 years recovering & then 2 years post viral but there is some permanent damage to my heart so I am on a couple of meds like Bisoprol a betablocker too.

Doing a little and then resting is my best advice, allow your body to recover at its own rate. I set myself weekly targets - i lived in a 2nd floor flat with no lift and couldnt manage the stairs for 12 weeks but i gradually built up to it. I wish you well. J

Thanks everyone for your comments, ive found them helpful. I have a consultant appointment on Wednesday with the respiratory team who are looking at my lymph glands to hopefully find the cause. I am in a frustrating cycle of rest, feel a bit better so starting doing a bit more, then I'm set back.

Hi Sunshine1984, how is it going? I was diagnosed at the beginning of June with myocarditis. Some days I can be fine but others not, no rhyme nor reason. The lack of support is awful and the anxiety, for me, is dreadful. Although forums like this can be helpful I also find them worrying when you read about people who never fully recover. I don’t have a follow up with the cardiologist and feel frustrated that support and rehab wise, I would have been better off having a heart attack.

Sunshine1984
Sunshine1984 in reply to ADAT73

Hi,

I completely agree about the anxiety. I go to bed sometimes feeling unsure I'll wake up!

My chest pain got worse so I went back into a&e a few weeks ago. My troponin levels were higher so they have started taking more action. I've had an MRI, booked for an angiogram and follow up with cardiologist.

I've been off work for 2 months, and I expect at least 1 more. I'm not certain I will have a job to go back to!!

Keep pushing them if you're seeing no improvement, speak to your gp, go back through a&e and just keep going till you have answers and/or a treatment plan.

Keep your chin up.

X

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