Do You Know of Anyone Suffering with Myocarditis?

Heart health and blood vessels
1

My story in short. While riding my bike at an extremely slow pace. I became short of breath, dizzy and experienced numbness in my arms. Went to the emergency room told them what happened..had an ecg that came back normal, my chest xray came back normal. But thanks to the wonderful doctor he said he would like to take one more test just to be sure. It was the tell tale sign of any heart damage ..the troponin test came back at 13. quite high. Normal troponin level is 0.02. Had every drug they could give me as I was told I had an heart attack. Taken to the ICU Heart Care Unit after days days of

fantastic care given to me I was off to another hospital for an Angiogram to fit stents in my arteries to open up the blockages. Came out of surgery and asked the surgeon how many stents do I have..

though I led an advanced aerobics class and road my bike 14 miles 2-3 times a week, dont drink alcohol, Logistics Coordinator of a Fruit and Veg scheme, eat healthly. Its possible that maybe I had 1 too many curries. The surgeons response was you have pristine arteries. Wow! Great thanks. So why all the chest pain. Well that was in April 2013, I was told I contracted a viral infection of some sort. Bed rest for two week Ibruprofen 3 times a day. The inflammation of your heart muscle and heart lining should clear up. July same thing but I was sitting down couldn't catch my breath the muscles in my arms felt like they were turning to mush. Now on 50mg of Declafenac, 16mg of Cocodemol

both 3x a day and 1 Omneprazol once a day. I am due to have my MRI Stress Profusion test soon. I just want to know is there anyone suffering with this rare heart condition? There is no cure. Footballers and otherwise healthy people die suddenly from it. Talking to my friends is pointless as they still say "Ohh just keep watching what you eat" "Eat healthy foods no snacking". It is so clear that they are not listening to me. Does anyone know of someone else that suffers with this debilitating disease?

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Hello mate, I sympathise with you, I was diagnosed with viral myocarditis in dec 12 following a small heart attack, I had an Anjiogram, echo etc, and finally a cardiac MRI which confirmed the myo. I have had various changes in meds statins, bp, and bobs, I have had to episodes since dec 12. Aug 13 and early cot. that's 2 more stays in hospital for a day or so. No real further answers than its a time thing.. Having pains today and don't know whether to get checked by hospital or not. It's the unknowing all the time. Btw I am 48 and was trying to get healthier last year by going back to martial arts. I had whooping cough and since then it's been downhill . According to the US sites myocarditis is an on going illness that does pass in an unknown time. Some results in death so I'm lucky there! Deffo not happy that I can't get clear of this as today is really upsetting!!!

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Hi Tagg1, wow, I feel the same way. I had my CARDIAC MRI a few weeks ago and was told I have severe inflammation on my heart lining (pericardium) and my heart muscle (cardium) confirming that I have Myocarditis. It also shows the infection on my heart, ughrrrr. I still have chest pains, itchy skin, my left wrist feels like someone is squeezing it throughout the day, dizzines and nausea. I went to the hospital in the early part of October and because it is a viral infection there is nothing they can do so of course, I was sent home. The worst part of this condition is you have no certainty in anything. If I broke my arm I know after 6-8 weeks with all being well il get better, but its an affair of the heart, unfortunately we can't see that. We dont know if its healing or not as the bouts come in waves...at least for me anyway. Its the not knowing. The US site Myopericarditis Foundation has been so useful. They also have a forum. The information is fantastic. Ive listened to the past webinars that was held, several times a year it seems. Its a vicious waiting game thta I don't want toplay anymore.....sorry I am so fed up its ridiculous. I was talking to a co-worker today and he told me that he was told he had myopericarditis but his recover time was 6 weeks. No problems after that. So there is hope.....however I think he is an exception. All the best to you Tagg1, keep me posted. Im due to visit my cardiologist on this coming Firday. Il come on for an update then. Take care until!

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Hi, hopefully youl get to read this....

Mainly just looking for some advice if you have any... Here's my story...

I'm 24, sept just gone I had tonsillitis, I started having really bad chest pains I couldn't breath and had a weird pain in my arms, I went into hospital where at first they just thought maybe I was allergic to penicillin, after a number of tests I was transferred to a specialist heart hosp, after all my tests and MRI scan it was confirmed that the tonsillitis had resulted in me having myo and pericarditis, the whole experience was such a shock to me, I wasn't even allowed to walk to the toilet, I was released from hospital after nearly two weeks and have been on pills ever since, I have an MRI check up scan next week and have only really started thinking about the whole thing and realised, I actually don't really know after deal about it, I no what it is and why it happened but I don't actually no if it's a long term thing or if il be okay, if anything in my life will be affected by it. Isit gone? Can it come back? My partner and I would like to start trying for a baby, in the back of my head I'm worrying about all of this. Should it be an issue?!? I'm slightly clueless tbh and would love .... Something, anything, someone to talk to.....

Thanks, and I hope to hear from someone

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Hi Emma, I hope this message finds you well. I was told I had Myocarditis in April 2013. It is now January 2014 and I feel pretty much the same. I am including in this message a link to the Myocarditis Foundation, that I found last year in search of answers to the very same questions that you have asked. All of it is a shock. I am still having chest pain. The medication that I was on the bring down the swelling in my pericardium and heart has caused severe problems with my stomach. So that's another change. Every case is different, but from my own experience and what I have researched, it reoccurs throughout your life, you will start to feel better and think all is well and the symptoms come back again, tiredness, heavy chest, I had mushy arms, numbness in my neck and jaws, etc. From what I have found out is that it affects fit and healthy people. I feel very thankful that I am still here as it also kills. Emma, I searched the web as I wanted to talk to someone or even set up a meeting place for people with our condition but because there are so few people with this debilitating condition it wasn't viable. If you ever want to talk or vent, just email me here. The worst problem for me is that my friends don't understand it has nothing to do with blockages, your diet, or any of the such. it is a viral infection that attacks your heart muscle and or heart lining and presents as a heart attack. So I feel I don't have anyone to talk to. here is the link: http://www.myocarditisfoundation.org/ I know all of this might be a bit scary, however, you are still here. I would speak to your doctor about you and your partner starting a family. I hope it helps knowing that you are not alone and there are survivors out there having the same feelings of uncertainty as you. Send a message whenever you feel up for a chat.

take care of yourself and get your rest, listen to your body. Hopefully it will not last very long for you!

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Hello Fizzychris, Reading your experience I thought I would tell you mine for company!.

I was diagnosed with Myocarditis on the left side of my heart in Feb 2013, like you, what a shock! I have had 2 MRI's and am waiting for the results of the last one which I had on the 4th Feb. These will be made known in April! Long time to wait eh! To help myself ,I downloaded 'The key to overcoming panic attacks' method. These I believe occur when I am having a symptomatic episode[attack}prefer to call them episodes, feel less like a victim!

As you say one can go without symptoms for ages and lulled into the belief that all is well. I had two long episodes [4Omintes] in December then nothing till 3rd Feb.That one lasted 10minutes. MRI dept said it was probably concern about the MRI, though I did not feel at all stressed. In fact almost went to sleep during process.!

During episodes I take paracetamol, though I belive Ibobrufen and asparin or nurfen is ok and do the method. I am not on any medication though I do follow the cardiologists advice about not excercising too much and rest when I can {not like me at all!} It has also precluded air flight, well, at least long haul. Need to ask about flights to europe. I miss my family who live in Italy and USA.

I am working with affirmations, as there is always an emotional reason when these things happen.

Like you, I am happy to be alive.

Hope to hear from you and wishing you all the best. Lois

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Hi Lois, thank you for the company. I have always known how important it is to have people to talk to and share with your friends and family, however, since this situation with my heart I have never felt so alone. I have people to talk too, so I thought I did. Because Myocarditis and pericarditis is so under diagnosed not enough people know about it and the seriousness of its effects it has on the people it attacks. So i am extremely great fun for the company. How weird is it that it attacks fit and healthy people. I thought maybe because we are possibly not resting enough and over working ourselves. ..I don't know. I am so glad for this site and the only foundation that is worth looking at: in my post to Emma I included a link to the US site. I was just on it and they said they're setting up a foundation in Australia and also in the UK. I'm from Alaska, but I've been living here for nearly 13 years now. When I've have my episodes,my new word now, they last until I take the declafenac. I was on ibuprofen but it wasn't working well enough. Are you able to go back to work Lois? I've not been released from the cardiologist just yet. You are so right about the MRI, I either fall asleep or doze sorta in and out. Quite relaxing, he he. I live in Manchester what part of the UK are you in if you don't mind me asking? Wishing you all the best with our episodes. One day at a time is what I say. I so look forward to hearing from you. Take care care until Lois and wishing you well. Christine

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Hi Christine,

I think you are right when you say us fit and healthy people have difficulty in slowing down, I know I used to pride myself with the stamina I had! I certainly rest as much as I can now as this is often part of the treatment for this condition.

I am a semi retired complimentary therapist, using herbal products to underpin my treatments. I am taking a very good quality multi vitamin recommended by a heart surgeon at Hartlands, ginko and hawthorn, vit E and C, high potency garlic,omega 3 fish oil. Cook with ginger and garlic and daily turmeric for infammation.

My affirmation is Joy,joy,joy fills my mind,body and experience, my thinking is peaceful, calm and centred.

I live in a village in Hampshire. I am also a colour consultant so I am able to continue with this part of my work. Are you able to work Christine?I will keep you in my positive thoughts and prayers and we will speak again soon. Lois

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Hi Lois,

Thanks for your prayers and positive thoughts. I'm not cleared for work yet, unfortunately. Have you managed to take a look on the myocarditis foundation website? Take care Lois. My thoughts and prayers are with you also. Christine

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Hi Fizzychris and anyone else who reads this, After reading these stories i wanted to share mines.

I was diagnosed with Myocarditis in april 2014. I was told it's rare for younger people to catch it, especially at my age of 23 but regardless i still have it. I'm really not sure how to handle this situation yet tho. Im on a few pills to help with the inflammation along as a blood thinner but after taking these for a few weeks i can feel the pain again. its not as strong but it feels as tho its coming back. Since I live on my own im at a point where i need to go back to work (retail) but im not 100% sure if its a good idea. but the bills don't pay themselves lol. Even though i know this situation is serious I choose to try to be as positive as i can around others. but when i'm alone i can't help but accept this harsh reality. I don't think im dying but to accept that their isn't a true cure for this kills me more and more with each passing day.

But, thats my story. I hope you all make a speedy recovery. keep your heads up!

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Hi. Normally a fit and healthy person (46 years), I'd had a nagging cough of varying degrees since New Year (2014).

In early March I had a deep-ache pain in my chest which spread down into my left arm. A call to the NHS resulted in paramedics arriving within 8 minutes and an ECG showing "inverted T-wave".

At hospital, bloods showed high troponin levels confirming a heart attack. Then an angiogram showed clear arteries (no stent required). An echo-cardiogram revealed reduced pumping efficiency.

The following day, having been denied Ibuprofen or other anti-inflammatory, my cough and breathing worsened - my "bit-of-a-cough" was then diagnosed as pneumonia.

Still on the CCU ward, it was a week later before an MRI reversed the heart attack diagnosis, with myocarditis (brought-on by pneumonia) in its place. Following the MRI results I was discharged within 2 hours with a bag of goodies including antibiotics, Ramipril 2.5mg, Bisoprolol 1.25mg, and a 2 week sick-note.

I was genuinely feeling better, but the Ramipril in-particular made me extremely dizzy with bouts of low blood pressure leading to frequent near-blackouts. My GP reluctantly agreed to halve the Ramipril dose (enabling me to drive), and I went back to work on-schedule. On advice, I halved the dose again 4 weeks ago, taking it every 2nd day, then every 3 days last week.

The Bisoprolol also made me dizzy, gave me muscle and back pain, severe fatigue, fogging my brain and making it difficult to concentrate. Following the last repeat prescription I became extremely irritable with everything and everyone (it was a different manufacturer - if that could make any difference).

I saw my consultant on Tuesday and she agreed I could cease the Ramipril, and could taper-off the Bisoprolol over 4 weeks.

Feeling so awful by this stage, I found info suggesting I would be safe to stop Bisoprolol completely having skipped one tablet the previous day, taken one, then skipped 2 days - my residual dose should be down to 3% of the minimum I was on after 75 hours. At that point why-on-earth would I ever want to take another?

I'm now into my third drug-free day and feel symptom free and full of life again.

I'm keen to get back to my martial arts - but am now thinking of waiting a little longer after reading these replies!

 

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Hi Ian19404, sorry for such a long delay. When I had the first episode of Myocarditis I was told not to lift a tea kettle of the such for 3 months. Even though after 2 weeks I flet a heck of a lot better. I was 2 days off my 3 months when I suffered another episode and my troponin levels were even higher.  I didn't have pneumonia and I had to take about 9 more months off. My suggestion is that you take it easy. Even if you feel better.  I had to pack in my Taebo class I was running and I resigned from working with  British Cycle as I couldn manage  if you have a doctor that doesn't understand that myocarditis is the number 3 killer of under 40's and the number 1 killer of children, it attacks fit and healthy people footballers have died on the oitch bexause they didnt listen to their bodies....I would just take it easy. Go to work but rest. When you rhink you are better you continue on and after a few days or even a week of normality you have an episode where you arw so tired you can't move.  I was hard for me to stop doing things even when I felt good. I did only the basics and a year after the first episode I got the all cleae from my cardiologist and I am so glad I slowed down. Frustrating yes, but I am still here building my self back up to before the first episode. I really hope all goes well and when you get a minute, go to the myocarditis foundation website.  It has a lot of vital information for people who have been hit with this virus.  I was on 50mg of Declafenac ro keep the swelling down on my heart muscle and my heart lining. Maybe at some point you may ask about it if you have swelling of you heart which I am assuming you do/had. 

Keep me posted on how you are. Praying you make a speedy recovery!

All the best!

Keep your head up....and remember you know your body. 

Take care until

Frizzychris

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Hi Frizzychris, thanks for getting back.

I had an echocardiogram last week and have been told everything is back to normal. Still drug-free!

I took my son as-usual to karate on Saturday - though thought it best to sit out as it was an extra-long session. Saying that, I couldn't resist putting some spinning hook kicks into the bag at the end - something I could not have contemplated with the dizziness I was suffering from Bisoprolol and Ramipril.

I have a holiday coming up in a few weeks, so I'll leave-off training at-least until after that. Hopefully airport security won't have a problem with my stick of nitro-glycerine (inhaler) which I'll keep nearby just-in-case.

I did take a look at the website you linked to, thanks.

Hoping you continue to improve with no further setbacks.

14

whilst on a short break to London (I'm Australian living in the Netherlands) in June I was admitted into hospital after suffering stabbing chest pains all afternoon and pain in my left arm. An ecg was made and blood taken. The docter came with the results being either Myocarditis or Pericarditis. They put me on heart medication and hooked me up to a telimetric box. The next morning I had a heart attack. After a couple of days I was transferred to The Heart Hospital where they did an angiogram. I had 'the arteries of a young person 

I am 60 years of age, I live a healthy lifestyle, have never smoked, I don't drink alcohol, and have a healthy weight.

After a couple of days I was tranfered 

15

Right, something went wrong there and I couldn't edit it.

I of course meant a telemetric box. Back in the Netherlands I started on heart rehabilitation, most of the time I get through the excerises okay, other times I start to get chest pains. I have noticed that 30 minutes of doing ANYTHING is too much and I suffer for the rest of the day. I have a heart MRI sceduled for July 22nd, results August 1st.

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Hi, I too got taken to hospital in the uk with atypical heart attack symptoms just 5 weeks ago, I had had a cold and a cough for weeks before, my echo was normal as was my ecg and my angio. They say it may be spasm or broken heart syndrome or myocarditis, but I was re admitted last week and my tropinin was normal, I am worried that myocarditis will not show now on my mri which is in 3 weeks. They may never know what it was, my ct scan was also normal. Even though they don't know what it was I am on statins, diltiazem and aspirin for life. My tropinin was at 20538 but went back to normal after 7 days in the meantime I am also on Prozac and diazepam due to severe anxiety.

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Hi annie46abbie,

Your cough/cold sounds similar to my circumstances. I had been pushing myself just before being admitted; not wanting to break family commitments.

Having been on the cardiac ward for a week, having everyone tell me I'd had a heart attack (high troponins, angiogram clear, echo showing "something"wink, it seemed a very sudden turn-about following the MRI.

I'm not sure whether the MRI actually confirmed myocarditis, or simply ruled out an MI.

However, I do feel I'd still be on medication (bisoprolol) if I hadn't insisted it was making me feel worse. I would seek wider opinion if you have doubts you should be on "meds for life". I have a hospital check-up next month (12 months since), so I'll soon find out whether I was wise or foolish...

 

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I am hoping this discussion is still going on.  I was diagnosed with myocarditis in March of 2015 after ending up in the ER.  It has now been six months, and I am still struggling.  The struggle to breathe is constant, chest pains come and go, the fatigue and tiredness is overwhelming at times.  Things got better, not completely but better, in July then it started all over again mid August.  I am so afraid this is how it will be for the rest of my life.  I was active, went to the gym, rode my bike everywhere, don't smoke, rarely drink and eat healthy.  Has anyone you've corresponded with found any solutions?  I've read a lot of the posts but not all of them.  I am constantly told it takes time, can take up to a year to heal.  I am in the US, and if anyone has any answers or a really good doctor to talk to I'd love to hear about it. I hope you are improving FrizzyChris.  Thanks for listening.  

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Hi Helcamp1. I'm not sure if I'm a typical case (is anything about myocarditis typical?), but I had a strong feeling that the drugs I was given (ramipril, bisoprolol) were holding me back from making a good recovery.

Like you, I was (and still am) relatively fit, never smoked, moderate drinker, healthy eater. I had months of fatigue and generally feeling listless until I made the decision to (rapidly) wean myself off both. The solid and sudden improvement was encouraging and I've felt back to 100% for many months now - vindicated by my March 2015 check-up and results (10 weeks later!) which stated "heart function essentially normal".

Obviously I can't advise you on your circumstances (I've no medical training), but please be encouraged that full recovery IS possible.

Wishing you all the best from the UK.

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Thanks for the positive feedback.  I am not sure I will ever bee 100% again.  I am not taking any of the drugs but the struggle to breathe, the fatigue and occasional chest pains continue to remind me that I am not the same as I was 7 months ago.  New doctor, new round of test coming up.  

Happy to hear you are doing well!  Good luck and stay healthy!