Patient Comments: Myocarditis - Symptoms

What were your symptoms of myocarditis?

Comment from: mimimia, 45-54 Female (Patient) Published: November 20

I am 49 years old but had myocarditis when I was 9 years old. I had a nose bleed that would not stop one evening. And I soaked a bath towel by the time I got to the emergency room. They kept me overnight but I ended up staying about a week. My family had to set up a bed for me on the first floor and I was out of school for several weeks. Then I was restricted from running, jumping, skipping etc., for months. In my early 30s I was told I had mitral valve prolapse. But then 12 years later after another test they said I did not have MVP. I've since wondered if I sustained permanent damage to my heart. Maybe a visit to a cardiologist is due. Considering this happened 40 years ago I feel very grateful to have not had any further problems.

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Comment from: karalynhines, 0-2 Male (Caregiver) Published: March 03

My son died on September 8 2013 and he was six months old. He never had even a runny nose before he died, always slept through the night. The doctors never saw anything wrong with him. He was a very big healthy boy but they did not see what was going on inside. I went to check on him in the morning and found him dead. It was the hardest thing I have ever had to see. They thought it was SIDS (sudden infant death syndrome), didn"t know what happened until they dug deeper on the autopsy and found out it was myocarditis. It's hard to hear what that is because I still blame myself for not knowing that something was wrong. I do not know if it will happen again because it could be inherited and my aunt died at 5 weeks from myocarditis. I'm so scared and I'm expecting; I can"t go through this again.

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Comment from: Stephanie420, 25-34 Female (Patient) Published: May 09

I was 29 years old and now 30. When I got real sick. I thought it was the flu I had for few days, I pushed myself to go into work cause I couldn't miss any more days, and thought if I made it through one more day I could baby myself to get better the next day which I had off. The next day I layed around I didn't vomit or anything just real weak and around 8:30 I said to my husband I think something is wrong I think I'm having a heart attack, my left arm went limp and I had bad pains in my chest. we tucked the kids into bed to make sure they wouldn't worry and he drove me to hospital and there I stayed for two weeks until I was better to leave, doctor said it was myocarditis, I've never even heard of that before and he said I was very lucky to be alive. I tried to ask what I could do not to have that happen again and he told me he didn't know where I had caught the virus from, but just to take it easy. I had worked at a prison then and few months later of course they gave me problems and was forced to resign. Boy did this take a turn in my life, but I am so thankful I'm still here today to watch my children grow.

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Comment from: Elj, 0-2 Male (Caregiver) Published: March 20

My son was 5weeks old when he had a cardiac arrest cause of myocarditis, he lucky enough survived. He is on medication now, consultants can't find out what caused this. I had prolonged membranes and he was admitted to special care when he was born, I feel this has a part in it. Just not knowing what caused my baby to nearly die is frustrating.

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Comment from: Bianca, 19-24 Female (Patient) Published: February 02

I was diagnosed with myocarditis in December 2010, about a month after my 18th birthday. A few days prior to being rushed to the hospital I felt flu like symptoms. Then the morning of I couldn't stop throwing up and my body was weak, I was rushed to the hospital and the doctors didn't know what was wrong with me until I had an EKG. They saw that my heart wasn't functioning normally and there I was rushed to Tampa General Hospital where I was in ICU for 2 weeks. I had surgery where the surgeons put a tube next to my heart to drain the fluids. I was so scared but most of the time I was so heavily medicated I didn't know what was happening. The doctors truly saved my life! I've been taking Carvedilol every day since this day and I'm 100% back to full health.

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Comment from: Nancy, 19-24 Male (Caregiver) Published: December 19

My son (age 23) died from Myocarditis in June of this year (2011). His only symptoms were a little chest pain and shortness of breath about a month before he died, that he thought was anxiety from stress at work (labor negotiations). It eased shortly thereafter, so he didn't see a Doctor. Then a couple of days before he died, he started running a low grade temperature and was achy. He just thought it was the flu. He died in his sleep two days later. I have to wonder how long he had it - if he just had it for a month, or if he had it for months before it got bad enough to take his life. I seem to recall a rash on his hand that he thought was dermatitis (may have been viral), and that he coughed a lot after one virus he had, especially in the mornings - it seemed to hang on longer than it should have. That was quite a while before he passed away (like 6 months to a year before). I know he also said he tried to start running again (he had wanted to join the Police Academy), but that he got so winded he gave up (man, am I out of shape!). That was also about 6 months to a year before.

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Myocarditis - Experience Question: Please describe your experience with myocarditis.
Myocarditis - Treatment Question: What forms of treatment, including medication or supplements, have you taken to treat conditions associated with myocarditis?

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