hello
Has anyone been diagnosed with a MINOCA, later diagnosis myocarditis in May.
Still have intermittent chest pain , but pretty much left in the dark anyone know how long inflammation will take to heal . Is pain because there is still inflammation.
Get breathless when walking up stairs and hills . Due to return to work end of month - very apprehensive.
Hi Toroda19
I’ve previously had an NSTEMI/MINOCA but under different circumstances. Mine was due to a coronary artery spasm as a result of a congenital heart defect called myocardial bridging.
A MINOCA (myocardial infarction in non-obstructed coronary arteries) occurs when there is limited blood flow to the heart despite having no blocked coronary arteries.
In terms of the myocarditis, there is another user on here who might be able to help. I will tag Captain_Birdseye as I know she has lived experience of myocarditis.
Just to add, Myocarditis can take anywhere between 3-6 months to recover from.
What medications are you on?
Sorry I couldn’t be of more help. Hopefully others will be by soon.
All the best.
Tos
Hello,It can be bewildering when we are confronted with a rare an poorly understood heart condition.
A Myocardial Infarction non obstructive coronary arteries MINOCA is less common type of a heart attack. More common in women.
The usual causes of a MINOCA are microvascular dysfunction, coronary vasospasms, spontaneous coronary artery dissection or a blockage of the coronary arteries by a blood clot by a blood clot or piece of plaque that has broken off from the inner lining of the blood vessels.
Myocarditis is an inflammation of the heart muscle.
Have you had any tests to say whether you had a heart attack or myocarditis?
Have your Cardiology team considered whether microvascular dysfunction or coronary vasospasms are the possible cause of your symptoms?
A Cardiac perfusion MRI is usually offered as it can detect inflammation due to myocarditis or microvascular dysfunction.
I have had myocarditis and I also live with vasospastic angina which is a possible cause of a MINOCA. I was admitted over 10 years ago with a suspected heart attack, however back then there was very little understanding of MINOCAs.
I was incorrectly told I couldn't have angina or a heart attack because my coronary arteries are unblocked.
My MRI shows I have pernament scarring on my heart muscle due to myocarditis.
Myocarditis can take sometime to recover from, often 3 to 6 months.
You need to rest, then rest and then rest even more.
Have you been able to speak to your GP about returning to work?
I suggest you contact your Occupational Health department for further advice and an assessment about whether you are ready to return work.
The BHF has this information about microvascular and vasospastic angina.
bhf.org.uk/informationsuppo...
bhf.org.uk/informationsuppo....
Cardiomyopathy UK has this information about myocarditis.
cardiomyopathy.org/about-ca...
There are a few other members of the forum who have had either a MINOCA and hopefully they will be along to share their experiences with you too.
thank you so much for your response . Consultant told me in hosp that I had a MINOCA, results of MRI showed inflammation in areas of heart . Follow up in a few months . Had bad chest pains over weekend possibly from over doing walking with dog - but then no one has told me I can’t !
GP has said will contact consultant for future advice - so that’s where I am
It's good to hear that your GP is seeking more advice.
Have you been offered any cardiac rehab ?
The cardiac rehab team can guide you about what exercise you can do.
I suggest you keep a diary of your symptoms and see if you can spot a pattern or any triggers of your symptoms.
Perhaps try to pace your activities.
It is also very warm at the moment and the heat can put extra strain on your heart.
Maybe try and walk your dog when it's cooler?
I know how important having a dog in your life can be.
My dog, Millie takes me for a walk every day whatever the weather.
Hiya,
I'm not sure from your post if you've had the MINOCA or if they suspected this and then changed the diagnosis...
Either way, they originally treated me for a heart attack, although they suspected myocarditis and it was confirmed to be myocarditis (no heart attack) after the MRI.
You'll see this time and again, but complete rest (both mental and physical) is needed. Convalescence is the only consistent treatment although I had also been prescribed colchicine for the inflammation and beta blockers to lower the heart rate.
Gentle walks (wait til its cooler) is all that's recommended initially, and then you can start to build when you begin to recover. If you had sprained a wrist or ankle, you would give it time to rest and heal completely before putting strain in it to try and prevent weakness... please do this for your heart. Your heart has had a hell of a shock and needs to recover.
Textbooks say 3-6 months recovery is expected, some managed sooner, some are longer - we're all different in that respect.
In terms of work, my fit note kept getting extended and then amended for a phased return... so speak to your gp if you need more time (I went back too soon and ended up back in hospital) and speak to occupational health about your condition to see if any reasonable adjustments can be made for you at work.
If you click on my profile you can see my previous posts with my story and some helpful replies I've had in the past.
Oh, and I found a heat pad (microwave gel pack for the neck and shoulder) helped ease the pain when painkillers didn't cut it.
Just to add... the hardest part for me was accepting life was going to slow down for a bit... I was 34, reasonably healthy and had just been promoted to a position I wanted. I had to give that up as it cane with too much stress in the end.
It wasn't fair, but I had good days... over did things, then had crippling pain and fatigue afterwards. Not worth it. So I had to just slow down in the end.
Hi, I was diagnosed with MINOCA two years ago, and then with myocarditis, which was extremely painful, but it did get easier, I still have chest pains which I use a GTN spray when needed, and painkillers.I haven't got a diagnosis as to why I had one, my blood pressure is low, I'm not overweight and I don't smoke, or drink alcohol. The Cardiac Rehab Team let me down, so I've been doing my own research, and this forum has been extremely helpful, especially Milkfairy.
Take it easy, we are all different in trying to manage our symptoms, but you will get there. All the best, take it slowly at work, and please let us know how you get on xx
Thanks for you response. I think we have had a similar experience , apart from BP. Glad to know I’m not milking this , feel a bit of a fraud, but did not have these pains before I had the episode , so something has changed . As there is no blockage - thankfully, feel like I’m left to get on with it. That’s fine, but would have been good to have some guidelines of what to expect as this in itself does not help stress levels . Thank you all for your comments and advice ☺️
You are welcome xx there is also a MINOCA group on Facebook that you can join, lots of us MINOCA gather and share information xx
I too have had a minoca due to a combination of perimyocarditis and micro vascular disfunction, the latter I was unaware of until then. My troponin was 44, and the myo was confirmed by mri, having left. A small scar on my heart as well. It takes some time to recover , 3-6 months, so if it was May it’s still early days. Best treatment is rest, rest rest, no lifting no anything with your arms that stretched your chest like in my case grooming my horse or dogs. It really is rest. Some advice I was given as well was if you do walk etc are sure you don’t exceed 100bpm to prevent stressing your heart. You will get there in the end it’s just a long road to recovery, and I found in our area as it was myo I wasn’t offered any cardiac rehab so this forum has been invaluable for support.
Toroda19, I am here to say there is hope: I was diagnosed with myocarditis (dx came after a cardiac catheterization showed no bloackages and very little lamination, under 10%, and the perfusion MRI showed edema and inflammation of the heart wall and reduced ejection fraction). They didn't relaly tell me very much what to do ("get some rest" in a general way) but on this forum the word was to rest, rest, rest, and when you think you don't need to rest any more, rest some more, and that is what I did: I did not lift anything over 5 pounds or so, if I felt myself getting out of breath or getting chest pain I immediately stopped and rested. Took it very easy, gentle stretching and isometrics only.
Now, around 5 months later (maybe a little less) I can finally tell I am getting better. I am no longer having chest pain every time I sit up or walk, I can walk around the house slowly and be fine, I walked out and put a letter in the mailbox today and did not have chest pain or fainting or heavy breathing. It sneaks up on you, so when you think you can't stand any more resting, just know that one day soon, you will wake up and wow, you realize feel better!
The trick really is not to overdo it. I feel I could get out and run again, but no: going to take it easy and very gradually regain strength.
Meds I had were prednisone to stop the swelling/inflammation inside the heart, and they tapered that down pretty fast. Also took aspirin, small dose chewables. And kept up lupus medications.
Good luck and I hope you are better very soon! ANd thanks to @Captain_Birdseye and @milkfairy and @Tor and everyone for your great advice here. (Much better than the cardiologist frankly.)
Thank you , feeling much better , still have the odd twinge more so when I wake ? I definitely agree with rest , you think you’re fine, but then your breathless .
This happened in April and have just gone back to work . BP is still high, but on meds so hoping this settles .
I hope you are feeling better and thanks again for your response 👍
hi there,
This has happened to me! Diagnosed with minoca at the hospital but had letter today that said it wasn’t minoca it must be myopericarditis as the mri showed my heart was absolutely fine.
MINOCA
Minoca microvascular dysfunction 
Minoca - no follow up 
