Do You Know of Anyone Suffering with Myocarditis?

Hello, hope someone replies me.... I'm 21 and was diagnosed with myocarditis about 2 months now and I haven't been myself cause of some things I read online, my ECG showed T wave inversion in the inferior and anterior leads and my Ejection fraction is 56. My Echo was normal. Thing is I've been too scared that I haven't even told my parents. I don't want them having to deal with this bad news. The first thing I noticed was palpitation around first week of July but went to d hospital the following week when I had sharp chest pain. That same day I played football and noticed my heart was beating faster than normal so I rushed to d hospital. The chest pain was later dat week.

I had HIV test done in June and last month and both were negative.. since its a viral stuff I just wanted to be sure, and does HIV cause myocarditis early? And I need someone to tell me what's happening to me

I hope people check this site still. I'm really trying to figure out what causes the myocarditis. I know a virus can cause it, but what else can?

My boyfriend is 32 and was just diagnosed with myocarditis. He works in a tropical area, so a virus seems like the most probable cause, but they did loads of blood cultures in hospital to find out what type of virus it was and they never found a match. Eventually they quit doing blood cultures after about two weeks, 3x a day. It could still be a virus as it's impossible to test for them all.

Prior to his diagnosis he was in fairly good health. He is not an athlete and does not have a regular workout routine, but he's still in pretty good shape and young.

He binge drinks at times and used to use cocaine socially over a three year period, using about 3x a month, not sure of the amount. He hasn't used any now in 8 months. He also smoked cigarettes. So, not a good combination for heart health. And Cocaine alone can cause mini heart attacks and damage the heart, but when he used -he also drank and that combination creates a new chemical, cocaethylene, which can build up in the system causing heart attacks and sudden death. But like I said, he hasn't used cocaine now for 8 months and has not drank much either or smoked. he was feeling healthy prior to the myocarditis.

I'm wondering if anyone here also used stimulants and if there is any trend regarding that? Or if a medical person might have more knowledge on a connection?

I read that chemical toxins in the environment can cause myocarditis. My friend told me his father was an electrician and the glue used to adhere tubing together was found to be the cause of his myocarditis. But if he stayed away from the glue toxin he got better and if he worked with the glue he had chest pains again and a new onset of the myocarditis. My boyfriend is also an electrician and he uses a toxic glue to glue tubing together, but he said he rarely uses it on his current job. however glue toxins can also build up in the system over time. And I'm just thinking we are surrounded by chemicals from cleaning supplies to preservatives in our foods... I wonder about this?

Does anyone else know about possible toxins in their environment that might be linked to their myocarditis?

I've read the comments here and how people feel so alone and helpless. I can't imagine how scary it must be to not know how to cure this or how to live with this. I would like to be as supportive as possible, any advise?

Thank you.

I'm an 18 year old lad, relatively healthy and woke up during the night with severe arm pain and chest pain. I was keeled over in the floor with it in tears it was that bad.. my mum presumed it was stomach related but regardless took me into A and E at around 4am. Upon arrival I was given an ECG which came back as slightly abnormal and then had an X-ray and a blood test. My X-ray was apparently normal however my blood test showed that my troponin level was ridiculously high, they took the first test and had to repeat again because they through the result was an error... my first troponin test came back in the 900's and my second one came back at 13,000... yes, 13,000! I was in hospital for just under a week whilst they monitored me, I was hooked up to a telematary device, given several ECGS and had an MRI. I apparently dealt with it so well because I'm so young, but was quite scary. Going back for an echocardiogram in January as a checkup but hopefully there isn't going to be any lasting damage!

Hi all, 

I too had myocarditis back in March 2013.

It took app 6-9 mths to feel 'normal' again and I've been good since but had a forced retirement as a result.

REST, REST, REST they told me and it paid off! 

My story....

-aged 55, female, grandmother

-healthy, weight fine, fairly fit, went to gym, walked

-travelled 6 wks in Asia just prior esp HK, China

-was tired from humidity, felt jet lagged on return home in Australia

-within a week I experienced unusual aching upper chest muscles similar to having been on a cross-trainer at gym; then within hours my heart area had a slow, sluggish 'squeeze' effect similar to when you try to squeeze a stress ball; then a pain across my upper back at the same time triggered my real concern (Dr Oz on TV oddly enough, I once watched, and learnt the difference between heart attacks and indigestion-back pain! Also if pain lasts more than 10 min to half an hour, seek help!). We went to Emergency!!

-Troponin extremely high at 180; had an angio but all good then an MRI diagnosed myocarditis but also a professor asked if I'd been to Asia?! Apparently weird unknown viruses originate there and the tests they had performed could not diagnose what virus.....I'd only been back 9 days and was in China 14 days prior.

-I was placed on statins/aspirin and had all explained in plain English to not work, actually not do a thing in fact!! Rest, rest, rest.....and the medical staff compared it to an Achilles heal or hamstring injury where you rest the muscles. Your heart is the largest muscle and the most precious, keeping us alive! 

-I slept, hardly moving initially...even brushing my teeth was an effort bringing on the 'squeeze' effect. Slowly I realised I needed to just be, listen to music, read etc but even holding a book was difficult too. But time is your healer.......

-I kept a diary and wrote a few words as writing was hard but as time went on, it increased as did my energy level and physical stamina.

-I set little goals like walking around the lounge room, up the stairs ....then I just sat or laid down before moving again. Then I ventured outside around the house, to the corner and later around the block and further. Small steps were big goals. I always knew when I did too much. I stepped back and appraised but would always want to do more...it felt restrictive but when I looked back at how far I'd come it was pleasing!

-A supportive partner or friend helps enormously

-monitoring my health via scans, ECG's, blood tests etc gave me a knew interest! But don't become obsessed. 

-I went on a health care plan and went to an exercise physiologist and a physio (as my core muscles went on me too and I had back issues as a result)

-I retired from teaching for good but it wasn't difficult given I'd worked for 35 years and have no dependants at home now. I looked at this time as a spiritual healing time too. You have to enjoy your own company. I remember thinking that this is what it must be like when you go to a nursing home!

-we went away in our caravan 6 mths later for a slow, bumbling trip with no real plan....perhaps that was what did it but by the end, several weeks later, I was at my peak in healing.

-My walking regime has improved since and I'm now a 1 hour min. walker a day using my Garmin! It set me off in a new direction in life in many ways.

-Myocarditis hasn't returned but it's always on my mind

-Strangely, I cannot wear underwire bra's anymore without a pressurised feeling similar to 'that' feeling!

-However, I've been reading about a repeat case of myocarditis and asked my cardiologist. His answer...."if there are 10 people walking down the street and you were one of them and the only one who had suffered from myocarditis, then you are the only one who is most likely to get it but then again, you may never get it"

-After almost 4 years I've never felt better but when I'm tired I rest, I don't over exert but I enjoy Pilates, walking and exercise physiology still. I'm a changed person because of myocarditis but I'm more in tune with my body, my health and my quality of life as I head to 60!

-I do hope each of you have recovered or are recovering well from when you posted above. Best wishesx

Hi not sure if anyone has had any answers to their concerns regarding the myocarditis issues they were having. I came about this site when I was searching for my husband.

My husband is 43 years old. February 2017 he had flu like symptoms which we thought was only the flu. He always gets these cold symptoms when he starts to exercise--which he started doing casually riding an exercise bike. Nothing new. But it lasted longer than expected. He started getting chest pain and sweating constantly. He went to the er the stupid nurse told him "most people wait this out at home." My husband told her it's more than the flu Bc he usually is fine at home with the flu. Regardless, he came home. Two days later he kept getting worse. Couldn't get out of bed. Back to the er he went. His Troponin levels were super high. Had him to a heart catheter right away, no clogged arteries thank God. Which the stupid cardiologist told him he wished he had a heart attack so it'd be easier to just put a stent in ... yes we got rid of that cardiologist real quick! Anyways, he was in the hospital for a week, he was put on lisinopril, aspirin (325mg), metoprolol, and cocheceen

I was diagnosed with myocarditis a month after my 31st birthday. Woke up with pains in chest and back, down my arms couldn't really breathe properly, so off I went to A&E. I was admitted for a few days while they done ecg, echo, angio... heart monitored to the max. I've two children under the age of 13, I was in a ward with 70 year olds+, a lady died my first night. I thought I was in the psyche ward. Awful. It was adding to my depression. The NHS staff in Dundonald hosp. are absolutely brilliant wee nurses. They are always in the go! Anyway, by the time I was leaving, my cardiologist told me, he wasn't happy about discharging me as my enzymes had increased. After another blood sample, I'm like a pin cushion at this point, my troponin levels were nowhere near lowering, but they discharged me anyway with my ibruprofen, omezrapole and painkillers and a letter  for a chest MRI as soon as possible. Luckily, I received that within a week. All my arteries, tubes and whatever were clear when I had the angiogram and when results came back from this, it was a mild for of myocarditis. But I was getting confused in the hospital, I think. They kept saying it was myoPERIcarditis. Is this the same thing? I'm not on any meds three months later. I have put on a tremendous amount of weight, but I keep googling and annoying my partner about fluid. Is this also possible? I still feel very fatigued, I walk up thirteen steps and I'm breathless, my minor pains come and go, but can be rather uncomfortable at times. When I asked my dr of my symptoms she said it was all normal part of recovery. 3-6 months bed rest. No activity, no bending over. I'm so frustrated. Is there anyone else with a weighty feeling in their legs, and breathless, etc??.... please. 

It's just happened to me this week..scared me to death to be honest ..so nice to know there's not just me going through it..I'm on a beta blocker to prevent heart failure..so scary..sending hugs..Gail

I am a 48 Year old woman from Belgium. I live and eat very healthy and I walk daily. In november 2017 I woke up one night with what I thought was terrible stomach problem. After An hour the pain became unbearable and when I looked in the miror, my complexion was grey. My husband drove me to the ER where the doctor immediately Said I probably had a severe heartattack. My bloodwork and cardiogram indicated the same. An hour later they checked out my arteries with a whole team standing by to put in Some stents. But they only saw clean arteries. They put me in the ICU for heartpatients on a monitor and started looking for another cause. After a lot of bloodwork and An MRI (apparantly the only way to be 100% sure) the diagnosis was virale myocarditis. My entire heartmuscle was infected. The week before I had mild flew  Symptoms. On Sunday I walked 5 miles, a day later I could barely walk 5  Steps. After a week at the ICU,  the infection was under controle and they let me go home after they checked I could walk up one flight of stairs ( only once a day). I wasn t allowed to do anything that Made my hartrate go up for three months. Apparantly the risk the first three months is very high (30%) to have a relapse and myocarditis is a stealthy killer. I tried to walk a bit further Every day without getting too tired. After 4 months I could walk 6 kilometers but still got tired quickly. After 5 months I was finally well enough to go Bach to work parttime. I had a second MRI after 5 months to assess the final damage and scarring of my heart. I have  permanent damage ( more then the doctors initianally thougt) but they havent scarred over yet. After 5 months and extensive testing I am allowed to do cardio again but the dochters advised me to never do extreme things like marathons anymore ( I didnt anyway).  I have to take a betablocker the rest of my life and go for a check up twice a Year.  But I can make Walks  again of 20 kilometers. I still get tired  faster than before and need An hour sleep more but for the rest everything is back to normal.  I think the most important thing is to rest enough and be patient. I know iT is very difficult, frustrating and depressive iT takes so long. I had a very active life myself and two teenage boys but it takes a lot of time.