British Heart Foundation
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Myocarditis duration? Help needed

Hi, 6 weeks ago I came over all flu-like then later woke with strong pressure pain on my chest. Long story short, cardiologist was quite confident it was myocarditis. ECG showed inverted T-waves but all other tests were normal (echo, bloods, CT of blood vessels, chest X-ray). 6 weeks later and I am still unwell - I feel ok until I try to do anything remotely physical (eg short walk to the shops) where I end up sore and breathless for a few days afterwards. Now my cardiologist is saying it’s not looking like myocarditis. I feel like I didn’t explain myself well at all & think he’s misunderstood my explanation of my symptoms from today’s appointment. My ECG is still abnormal today. Has anyone else had experience of myocarditis lasting +6 weeks? I’m normally weightlifting and sprinting... I was super fit and strong.

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I can't offer much in the way of advice but I am in exactly the same boat! I was diagnosed with myocarditis 2 weeks ago after chest pressure and I too am kean to know if I will ever return to normal. i know for some people the damage is permanent and for others it will return as and when the virus passes and so i think its very much on an individual.basis but I just wanted to share your frustration! as for the diagnosis perhaps this will become clearer with more tests? I am still waiting on an mri scan for more clarity?? it sounds like the heart is a very complex thing and there are a million and 1 conditions that affect it with very similar symptoms.

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Hi Lizzie, thanks for the reply - what results did they base your diagnosis on? from what I've read, it's a bit of a guesswork unless there's a biopsy of the heart (very rarely done) although I've read on the myocarditis foundation's forum that MRI seems pretty helpful

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Hi, I too was diagnosed with myocarditis, later revised to myopericarditis. Over the course of 4 days, I was getting chest tightness and by day 4, it had become very painful so i went to A&E. ECG and blood pressure were normal they said so they did a blood test. It showed high levels of troponin and the doctor told me I'd had a mild heart attack.

I was in shock and I still am 8 weeks later!!. I'm a 57yr old, otherwise physically fit woman. I eat a healthy diet, I walk a lot and swim twice a week. I had a CT scan, echocardiogram and an MRI scan plus ECG's, cholesterol and thyroid blood tests. MRI and CT scans showed clear arteries but echocardiogram showed inflammation to the myocardium and possibly the pericardium. Unfortunately, there doesn't appear to be much data on this condition, even my own GP, who has been brilliant with me, has apologised about the lack of advice and information i have received from the cardiologist and the heart unit at the hospital. I have been very disappointed with the lack of contact from my cardiologist. After being discharged, I was told I would hear from him in 6 weeks but 8 weeks on, he contacted my GP to say he wouldn't see me for another couple of months and told him to change all the tablets he had prescribed in the hospital. I have Clopidogrel, Omeprazole, Atorvastatin and Ibuprofen but he now thinks I should be taking ACE inhibitors. My GP is confused by his advice (as I am) and he is now contacting the cardiologist to ask for more information. I am still off work as I still get some tightness in my chest if I walk too fast, go up stairs or up a slight hill but I try to do some walking every day, walking slowly plus some gentle exercises at home. The lack of general info about this condition is upsetting and I get some down days when I can't do what i did before.

But my GP is very reassuring that I should make a full recovery. He said that a lot of people may have myocarditis but most will put their chest tightness down to other things. In most cases the inflammation can resolve itself with rest. In some cases where they have ignored those warning signs and the pain has become very strong, it could then result in a fatality, that is why there is so little data about this condition. I have taken this as a warning sign to be more aware of my own health and heed any warnings my heart/body may give me, I want a long and health life ahead of me, as I know we all do, so good luck.

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Hi I was diagnosed earlier in the year with myocarditis. There is very little information really just the basic stuff symtoms etc . I was told to get on with my life and not to worry although my anxiety has been really bad two weeks ago I started with a bad cold so now I'm worried that it's going to happen agin cause I've been feeling a little breathless it's problem due to worrying . Hope u all feel better soon

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How’re you doing now Lola?

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Hi mate. I’ve now had Myocarditis for 3 months and my cardiologist says it may never go. I’m on medication to prevent the disease from getting any worse

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Sorry to hear that - I hope it does go for you. I’m 2.5 months now and improving just glacial slow

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I've just realised these posts are a couple of months old so I was wondering how you are all doing now?

Does anyone where a heart rate monitor or fitbit? I am finding that even slow walking makes my heart rate so high my fitbit thinks I've done a bike ride!!! Is anyone else experiencing this?

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Hi HHH, I am STILL stuck with this misery. Walked my dog 30 mins last week after almost 2 weeks rested and feeling totally normal and ended up with super bad chest pain for 2 days and now settled to a pain akin to a bad headache in my chest (at 4 days). I’ll have had this 4.5 months by the end of Feb. ive been off work the whole time and basically stuck in the house. Zero cardiology support :’( he actually discharged me the same letter which described some changes in my heart from the MRI (which I paid 1200 for out of my own pocket to get it done) and is only seeing me early March to answer questions I sent him after being discharged regarding if those changes were permanent or not. Seems a common theme that cardiologists aren’t interested unless you’re dead or dying! I had my MRI at week 8 - i want to know if any more damage has been done in the 12 weeks after that :/

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It certainly is a common theme isn't it : ( I am managing about 45 mins with the dog at the moment but have good and bad days. totally over did it Tuesday as I felt really well then had terrible chest pain all evening/night and day in bed Wednesday!!! Must remember to take my own advice lol small steps/targets.

I think its awful that you had to pay for your own MRI : /

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Yeah it’s not been the best care tbh. I can’t tell you how nice it is to hear of someone else in the exact same super-frustrating and lonely position! Are you off work? How long have you had it now?

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The Bear... I just received a MRI to confirm whether or not I had myocarditis or not, but with elevated troponin levels at the ER this is likely. What was your diagnosis after MRI and how do you feel overall. I too have been struggling over the past year.

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Hi Chris. I’ve had normal troponin so they’re not settled on a diagnosis. My MRI showed s area of ventricle wall not contracting and mild dilation of the atria. That was at 8 weeks but I was symptomatic for much longer so they’re repeating the MRI in a few months to see what the final score is. I’m back to full activity and training now (building up fitness) and am symptom free so it’s easier not to feel so worried in the meantime :) hope you’re doing ok x

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Wow. That's pretty good news in general.. It seems you are bouncing back. Keep it up! Even with the MRI result however, do you need took take any medicine for wall and mild dilation?

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nope - I assume because I've an ejection fraction within normal range (ie its been changed but not damaged enough to affect the performance) I expect the repeat MRI will be to look at the performance now as well :)

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Sorry for the delay in replying I have been off work since being hospitalised 16 - 31 October so 4.5 months. I have just started a very slow phased return to work but am struggling. I worked for 2 hours Tues and Thurs this week and found being back in the classroom and busy school environment very overwhelming and exhausting.

I wore a blood pressure monitor for 24hrs last week and await the results. I have another scan booked and appt with consultant in June.

It seems impossible to even consider any form of exercise as even a slow gentle walk and my fitbit congratulates me on a major cardio work out! I can definitely see some progress but it is so much slower than I was led to believe/expected. I'm most anxious about long term damage and implications. At the moment I just cannot imagine ever being 100percent again. Which is probably very silly as I am lots better than I was whilst in hospital obviously and hopefully this recovery - albeit slow - will continue : ) I so hope you are starting to see some progress/improvement. How long since you were diagnosed?

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Hi all

I had a cardiac arrest may 2017 with no warning signs ( I was on a cruise holiday at the time so completely relaxed ) MRI showed it to be suspected myocarditis I have also been told I have a left ventricular bundle branch block. Arteries all clear so was fitted with a defibrillator and pace maker had a follow up MRI in September which showed mild heart failure caused by damage done by the arrest. I too get very tired and heart rate goes up to about 120 beats a min. When I take a short slow stroll. Awaiting follow up MRI about August 2018 to see if any further deterioration. Am now looking for travel insurance as have been told I am fit to travel any recommendations please. Keep well everyone.

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Hi Sara, how are you doing? did you have any luck with travel insurance?

I'm due a full MOT on the 21st of this month with ECHO, MRI. ECG and consultant appointment. Am so hoping for some good news as its been nearly 8 months now.

According to my fitbit my heart is racing less and not telling me I'm doing a cardio work out when just walking slowing so there definitely is some improvement. Jen

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Hi Jen, no have given up looking for the time being, went to Wales instead. Currently every time I see the heart failure nurse she tinkers with my medication which is still causing me to be tired and had a nasty chest infection, going back to gym rehab tomorrow is going to be tough. Still waiting to hear re further MRI and consultant follow up due to a bit of a mix up ref notes transfer. Good luck with the MOT

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Hi Sara, Wales is nice lol! Hope you did have a good break. nice to get away from all this isn't it?!

I'm shocked how many people seem to have the same story re not much info and poor care - I'm thinking when well enough and looking back on all this I'd like to make a leaflet with info for fellow suffers as the hospitals don't seem to be interested.

Thanks re MOT : )

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How are you doing Bear? Much better i hope. Exercising or working yet? Other than dog walking I'm still not exercising - partly due to breathlessness but partly my own anxiety I think. I'm working 3 half days a week and have had to reduce my contract to this as I can't manage full days and my sick pay has run out : ( It's been nearly 8 months now and I'm feeling a bit of a failure!!!

I'm really hoping when I see the consultant late this month he might allow me to do an exercise/stress test. Have you done this or anyone else? J

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Hi :) things are good for me I’m at over 8 months and it takes a fair bit to bring on any symptoms at all although it’s still there if I push hard. I am exercising and desperately trying to get back to work (works fault) should get progress next week. My pay ran out too - so stressful. I built up from very little and am back to training now although still a long way from as strong as i was but it is coming back quickly.

I did a stress test before I did any exercise as I wanted reassurance. I had to pay privately for that (and the MRI before that) and changed doctors as I wasn’t happy with the care.

I’m on a list for a NHS appointment with my new doctor (I’d seen privately) and he wants a repeat MRI in a few months to see what changes I’m left with.

I’d get a stress test and then once reassured you’re safe, you’ll know you can push yourself over your anxiety :)

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I was in the hospital in November 2016 had high tropin levels and salmonella poisoning. Possible scar now.. Never was fully diagnosed with myocarditis, but from research it seems like it. I've been struggling ever since. Chest pain shortness of breath etc. The worst is the anxiety... Doctors aren't educated in research to understand fully. However, I am hopeful and your recovery is a sign of relief I'm not the only one. I'm sorry you had gone through this, but I hope your recovery will be successful. Thank you guys for sharing your journey.

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Hello Chrispaul, are you on any meds for the anxiety?

I ask because 3 months after initial myocarditis I still get chest pains and SOB. My GP said it could be anxiety causing this rather than the heart. He prescribed Pregabalin (150mg/d). The anxiety disappeared pretty much straight away however chest pains increased noticeably, at one point it felt like someone plunged a dagger into my heart (I was almost asleep at the time and under no stress).

I have stopped the pregabalin for now until I see my cardiologist and the chest pains have subsided back to their previous levels.

There is warning on the pregabalin information sheet about heart failure but I assume most GP would have known about that.

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Yes I had the same situation. It worked for a month UT than I had very bad leg pain in month two. I tapered off slowly. However, now I have chest pain as you described. It can speed up the HF process but I've read in mostly elderly. I wouldn't worry about that too much, from my experience however I do not recommend taking any time of anti depressant. How is your recovery from myocarditis did you have a Mri?

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Hi, I was interested to read this and wonder when you are seeing your cardiologist? I have been considering taking something for anxiety so want to be careful not to make my heart any worse. I am seeing mine this week so wil ask if he recommends any particular medication for anxiety.

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I’m seeing him this morning, will let you know what he says. Please could you let me know if yours recommends or advises against any particular anti-anxiety meds?

The pregabalin definitely worked for the anxiety, it just seemed that the chest pains were worse. I did some more looking around but it seems there is very little research on the subject.

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Hi HHH 2017

Ive done a exercise test it was a good result but stress is good to see if you have blockage and overall tolerance. I think time will heal all wounds. I have extreme anxiety and panic attacks from my recovery and a lot of my shortness of breath comes from that. However, try to get the stress test done it will help ease your mind and it's another tool for you to diagnose your current cardiac health.

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Don't feel a failure

You are too important to the children you work for and the school you are in

You're posts are giving me hope

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Thank you this is soo reassuring : ) I am hoping the consultant will agree to the stress test but if not I will do the same as you and go private. Great to hear you are training and building yourself back up but so sorry to hear work has been more tricky : (

It's still that worry too about what damage there may be long term that is also playing on my mind. Trying to tell myself it's not worth worrying about at this stage but it's easier said than done. I'm expecting a repeat MRI in October so that will be a year.

I do hope you get better care from your new doctor! Best of luck and thans again. J

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Hello

I noticed from reading your exchanges with Bear that you are a teacher.

How are things for you in the classroom? I'm a secondary teacher and I've been off since Jan with suspected Myopericarditis. I haven't had any medication and though I am a bit better than I was at the start I'm way off being well enough to go back to work and I'm scared.

How did you manage that transition? I'm interested to know how you coped/cope

Thank you

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I have found it quite tricky going back despite my hHead being really supportive. I felt very fragile and anxious or noise, crowds of children, the rush at break time etc. I have actually been on a phased return for 2 terms and have now just reduced my hours and am doing 4 half days. I am definitely suffering with anxiety but it has become easier at work - particularly coping with the break times and busy corridors. but I do find it VERY exhausting still. I have tried a couple of full days but then made myself ill for a couple of days afterwards so decided it just isn't worth it. Being off so long and not using my brain has also made me a bit forgetful too! But things are slowly improving. I would advise not to rush back, ask Gp for a phased return and ask Head to refer you to see occupational health - they were really supportive and wrote an excellent letter to school supporting a very slow return. J

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Hi

I'm hoping you are feeling better now and that the medical experts are supporting your treatment. I know these posts are not that recent.

I can say from experience this illness is so very frustrating. I fainted at work in Jan and since then I have been out of work unable to function on a basic level due to the symptoms that I am still struggling with.

Staying positive and listening to and actioning advise given by the experts is how I am trying to function. Resting and taking it slowly. I have had a friend who had pericar ditis 12mths ago and she has recovered so I'm holding out the hope that we all will recover, it just might take some of us longer than others and staying positive will help.

I too have had issues with the cardiologists and had to pay for tests to speed the diagnosis process up and I'm still waiting for follow up appts. There's just so many people in the system they can't manage, added to that an unusual heart condition that manifests itself differently in different people we don't stand a chance!

Are you or have you been on any medication at all?

And how are you feeling now?

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