Myocarditis help.

[Paulit]

Am 39 years old male. I have had one of the worst cases of myocarditis now for 7 months. My troponiin level is elevated and has been the same for 7 months (over normal range) and my ecg have negative t-waves. My symptoms include chest pain, dizziness, fatigue.... (worst cases) Am on bisobrolol. All the images (MRI...) suggests that everything is ok with me but the symptoms are taking a toll on me. The max I can walk is 10min in a day. Otherwise I have been in best rest for 7 months now. Any help would be appreciated.

[Milkfairy Heart Star]

Hi Paulit

Welcome to the forum.

I am sorry to hear you are still not feeling well.

There are some other people on the forum who have a lived experience of myocarditis and I am sure they will be along soon

I had a an episode unknown to me of myocarditis which showed up on a recent MRI. I have ongoing symptoms due to another heart condition including slightly raised Troponin levels and inverted T waves on my ECGs, chest pain and fatigue.

I suggest you call the Cardiac nurses on the BHF helpline or the Cardiomyopathy UK helpline.

bhf.org.uk/informationsuppo...

cardiomyopathy.org/about-ca...

[Paulit in reply to Milkfairy]

What’s the condition you have since we seems to have have same symptoms?

[Milkfairy Heart Star in reply to Paulit]

I live with Coronary vasospastic angina.

The small and large blood vessels that supply the blood to my heart go into spasm. This causes microvascular and vasospastic angina. I get most if my pain at rest.

Vasospastic angina effects men and women equally.

Microvascular angina is much more common in women

I have so much pain from my vasospastic angina that I probably didn't notice the Myocarditis nor did my Cardiologist look for it.

bhf.org.uk/informationsuppo...

bhf.org.uk/informationsuppo...

[christina1947]

Hi Paulit have you seen a cardiologist consultant ?

[Paulit in reply to christina1947]

I have seen a cardiologist. I'm now an outpatient.

[Paulit]

I would also like to know the duration that other people have faced. Mine is now for 7 months. My symptoms haven’t changed since it all started. I see the cardiologist every 2 months.

[HHH2017]

Hi, Im so sorry to hear how bad you are feeling. Sadly it can take a long time to recover & each of us is very different. However a common theme is not to try to do too much too soon as this can cause set backs. I was in hospital for nearly 3 weeks, months of sitting around at home unable to manage my stairs even. After about 8 months I tried to return to part time work but have now taken early retirement. I am about to ‘celebrate’ my 2 year anniversary! I now attend cardio rehab and this is helping build up my strength & stamina. I can also do a dog walk most days and i have occassionally managed a swim which Ive been very proud of.

For nowstick to your10 min walk a day and be proud of yourself, in 2 weeks time you might manage 15mins every other day and slowlybuild up. Your heart has suffered a MAJOR trauma, be kind to it and to yourself- it will get better in time. Good luck : )

[Paulit]

Am now recovering from home. My worst symptom has been head rush, dizziness, wobbly legs, loss of balance. I have had dizziness 24/7 since my disease started. I get bad head rushes followed by fast heart rates (120-170 bpm) even when at rest. The other one is Angina where the same spot has been paining all the time for 4 months.The pain in the chest starts right after I wake up. My situation hasn't changed and I believe its getting worse. The doctors are playing with time thinking that I will start recovering at some point.

[Paulit]

After nearly 10 months my situation remains the same. My biggest symptom now is shortness of breath. I went back to the cardiologist for a CT scan of the coronary arteries and hoping all will be well. The doctor mentioned that it might not be myocarditis and they are looking for another diagnosis. Am still on bed rest. Don't know what to do after 10 months.