Patient Comments: Myocarditis - Experience


Please describe your experience with myocarditis. Submit Your Comment

Comment from: Meka24, 35-44 Female (Patient) Published: June 02

I was 1 year old when I was diagnosed with myocarditis. My mom has said I was sick with flu like symptoms but I wasn’t getting any better. She kept taking me to get a diagnosis, and refused to leave without an answer. I spent weeks in the hospital and recovered from myocarditis. Thank goodness!

Comment from: Theo, 19-24 Female (Patient) Published: July 02

I noticed a red circle about the size of a silver dollar on the inside of my left thigh. I thought it was a symptom of Lyme disease. So when I started feeling dizzy and nauseous, I thought it verified the Lyme disease diagnosis. When I went to the local clinic the doctor looked in my ears and diagnosed labyrinthitis. She put me on antibiotics but after reading about the condition, it states that the bacterial form is rare and the viral form is more common. Wonder if anybody else has been given antibiotics.

Comment from: Charlie, 0-2 Male (Caregiver) Published: January 06

My son died of acute myocarditis in 1989 when he was 3 months old. His symptoms were fits and vomiting. He died 2 days after being admitted to hospital after he developed respiratory failure. In those days there was no cure for this acute type he had. I wasn't told of the cause of the virus. He was the 7th person in the world to die of this as well according to the hospital. The Berlin heart is now a treatment while awaiting transplant. He was fit and well one minute and dead 2 days later. No warning signs other than above listed ones.

Comment from: Gary, 25-34 Male (Caregiver) Published: October 15

My healthy son was 30 years old when he started having a headache on a Friday morning. He went to work that day but came home mid afternoon and said he was very tired and still had a headache. He rested over the week end to try to get ready for work on Monday but when he did not leave for work early on Monday my wife went down to check on him and found that he had passed away during the night. It was found that he had myocarditis and the only signs were headache and tiredness for about 3 days before he passed away.

Comment from: tanya, 25-34 Male (Caregiver) Published: June 28

My 26-year-old son died last year due to myocarditis. He was an active father and didn't smoke or drink. He had gone to the hospital 6 months prior to his death and they told him he had pancreatitis, but he had very intense pain in his chest. The week before he died he was also experiencing flu-like symptoms. He died on the way to the hospital. The autopsy report said that he had a heart infection due to the coxsackievirus.

Comment from: natasha, 25-34 Female (Patient) Published: May 13

One night, I was sitting outside struggling to breathe and my heart was skipping beats. I didn't think anything bad of it because I have asthma. Two weeks later, I was at work and felt confused and couldn’t stand up straight. I was dizzy, nauseous, and my heart was beating fast. I went to the doctor, who said I had the flu. He gave me the vaccine injection and the next day I got worse. I went back to the doctor, who prescribed medication for depression. I visited about five doctors, who couldn’t tell me what was wrong. Finally, the sixth doctor diagnosed me with myocarditis and gave me antibiotics, a beta blocker, and cortisone. I can’t remember the next two weeks. I returned to the doctor and continued to see him for six months. I started to feel better and my palpitations were not as bad. I was worried and didn’t want it to be my time to go because I was only 23 years old and had two kids. That was three years ago and I still have palpitations. The doctor says my heart is very sensitive and the best way to get it stronger is to do yoga. My heart still skips beats. In the last year I’ve had two miscarriages. I went for a test and they can't find anything. The virus turned my life upside down and things will never be the same again. I'm tired most of the time with the heart beats I have and miss out a lot with my kids. I can't play with them like I always did because of my heart. It is killing me slowly to disappoint my family like this.

Comment from: Anthony, 35-44 Male (Patient) Published: May 13

I am a 39-year-old diagnosed with Lupus about two years ago. Just a few weeks ago, I experienced some of the same symptoms as many of you. I didn't have any flu like symptoms at all. Each episode started out feeling like really bad heartburn, and then heavy pressure in my chest. The pain moved up into my jaw and ear area on both sides and then severe headache. These episodes started out lasting about eight to 10 minutes long and then went to more like 15 to 20 minutes. Sometimes had the pain radiate to my left arm or my neck. Went to the ER and they said the EKG was abnormal and that my enzymes were elevated. They told me that I was having a heart attack and transported me to another hospital. There they did the angiogram and that showed no blockages. I saw two different cardiologists during my stay. One cardiologist said no heart attack. The other said you have myocarditis. The physician’s assistant said you had a mild heart attack because of the myocarditis. Now, I'm confused.


In the U.S., 1 in every 4 deaths is caused by heart disease. See Answer