I had heart attack/heart failure in January but angio showed my arteries were clear and Echo showed EF of only 35%. I am on lots of heart meds and was given diagnosis of MINOCA on discharge. My heart nurse told me my notes said the MRI that is still 6 months away is to determine whether Myocarditis or Takotsubo. I don't have any noticeable symptoms. My concern is that every thing I read about Myocarditis says REST but Takotsubo and other heart issues the recommendations are for Cardio rehab and exercise. Should I be resting or exercising when I don't know and won't know for months what is actually wrong. I currently walk a few miles over hilly terrain most days and this obviously raises my heart rate. I'm so afraid I am doing the wrong thing. Could anyone tell me how they got their diagnosis of Myocarditis? Many thanks.
How is myocarditis diagnosed? - British Heart Fou...
How is myocarditis diagnosed?
In 2012, I was admitted to hospital with a suspected heart attack. Back then there was very little understanding about MINOCAs or angina non obstructive coronary arteries, ANOCA.
I was told incorrectly that I couldn't have angina or a heart attack because my coronary arteries are unblocked.
I wasn't allowed to go home until I had had a cardiac MRI which showed I had myocarditis.
My angina didn't and still hasn't got much better.
I was later diagnosed with vasospastic angina following a specialised angiogram.
Perhaps ask for a cancellation to see if you can have an earlier MRI?
There is still alot of confusion and lack of knowledge about MINOCAs, ANOCA or Takostubo syndrome.
Cardiomyopathy has some information and a helpline.
cardiomyopathy.org/about-ca...
cardiomyopathy.org/about-ca....
Thank you for replying. I have told the heart nurse I would accept a cancellation and get to the hospital however last minute it was but nothing yet. Was there a link between your Myocarditis and the vasospastic angina you were diagnosed with later? The doctor in hospital mentioned some kind of microvascular dysfunction as a possibility despite the clear arteries but the discharge notes only say MRI is to check for Myocarditis or Takotsubo. Is Vaso spastic Angina a form of microvascular dysfucntion? It does feel as though no-one really knows or understands what has happened to me. I'm so sorry your angina hasn't got much better even though it has been diagnosed and you are presumably getting appropriate treatment.
Vasospastic angina is caused by transient constrictions of the coronary arteries, coronary vasospasms. Microvascular angina by microvascular dysfunction which is when the small blood vessels fall to dilate or stay dilated in response to exercise.
Vasospastic and microvascular angina are types of angina/ ischaemia non obstructive coronary arteries ANOCA/INOCA.
I don't know whether my myocarditis is related to my coronary vasospasms.
I do have a supportive Cardiologist whom I can contact if my vasospastic angina becomes unstable and I need admitting.
It is unsettling when you nor your Cardiologists understand why you are having your symptoms.
I kept a log of my activities and was able to spot my triggers of my angina, which are the cold, emotional, mental and physical stress.
I have most of my chestpain at rest which is a classic symptom of vasospastic angina.
I hope you don't have too long to wait for your MRI.
Have you got any other long term health conditions, or do you take other medications ? I only ask because how much you do is also affected by any preexisting health issues you had before your heart attack.
If you don't mind sharing that it would help people give you more guidance.
Prior to the ECG and blood test that got me sent to the emergency cardio unit I was fit and well with no health conditions at all and no long term medications. I did a lot of hill walking and have gone back to this. But just don't know if I should or if I should be resting instead. I don't know what's best and it seems that regardless of what is actually wrong everyone is given the same info about cardio rehab which is info based around what is good for people with heart attack/heart failure caused in some way by blocked arteries.
Hello, I had what mimicked an MI at the end of November 2024. Central sternum pain only. Echocardiogram clear and I came home from hospital on Clopidogrel and aspirin and a high dose of atorvastatin.I was lucky to have an MRI 2-3 weeks later but, with Christmas and being away, it was the New Year before I received a revised diagnosis of Myocarditis rather than NSTEMI MI. I was told to stop Clopidogrel and aspirin and halve statin dose.
I felt so exhausted there was little choice but to rest but now, nearly 4 months on, I feel much better though some days a little breathless and tired.
So, in answer to your question, MRI is the best diagnostic tool for Myocarditis. Although Takosubo was mentioned it was obviously ruled out by the MRI. I must be lucky in that I live close to a teaching hospital with a massive cardiology unit. Hope you can get your appointment brought forward. Good luck
Many thanks and glad you are so much better now. It must be such a relief. Have you rested a lot to help yourself recover? I keep hoping whatever has happened to me is something that may resolve itself too but I will just have to wait for the MRI to see what the problem is.
Yes it's good to feel the Myocarditis is improving. I really had no choice but to rest as by about 2pm I was overwhelmed with exhaustion and simply had to put my feet up. Didn't usually sleep so guess it was mainly physical. I am, as I said, just so sorry you have to wait so long for an MRI. I don't know what part of the country you are in or why I was so.lucky. I could have had mine in the next few days but refused to stay in hospital, probably over the w/e, so got the appointment for less than 3 weeks later. No chance of going private I suppose? Good luck!
Hi, so sorry to hear you are going through this. I had myocarditis with pericarditis 7yrs ago. I was extremely ill, had 2 heart attacks and was hospitalised for a few weeks. REST was essential but initially it was the only option. In hospital I couldnt even walk to the loo! Pain, and breathelessness were acute.
It can be far less severe & more flu like - aches & pains, fatigue for example & not everyone goes into hospital with it by any means but they may not get a confirmed diagnosis. MRI and echo scans are vital for diagnosis.
I think it might help you to talk to the BHF nurses and discuss what happened to you and how you are feeling now. They are excellent and Im sure can give you some reasurring medical advice.
My gut feeling is if you are able to walk for exercise, as you are at this stage, it probably isnt Myocarditis but this is only based on my personal experience. Best wishes for a good recovery and do let us know how you go on.
Your experiences sound frightening. I hope you are fully recovered now. My heart failure had zero symptoms other than an uncomfortable feeling in my chest that I thought was stress. But I did have very bad Covid for three weeks prior to it happening and I understand Myocarditis can follow a viral infection. It is so hard to know what is wrong and what to do. I haven't tried the BFH nurses helpline yet but maybe they can help me make sense of it.
I reply hope so. I called them to ask wuestions in the early days & they were fabulous.
I have a new normal now, as my heart remains enlarged & scaredso finds exertion difficult. But I can walk on the flat, swim & play with my grandchildren🥰I pace myself, only work v part time now, and Im happy 👌🏼 I hope your full recovery & answers comes soon.
It can be hard to distinguish between Myocarditis and Takotsubo, particularly as both cause inflammation of the heart muscle
AlThough there is guidance from the European Society of Cardiology (ESC) on sports Cardiology, I am afraid that the advice on Takotsubo is also very mixed as there is currently no evidence based guidance on rehab for this condition - applying the same guidance as MI and similar conditions is not always appropriate The fact that Takotsubo causes inflammation of part of the heart muscle does not seem to be widely known by the people who plan and deliver rehab - the advice with inflammation of the heart muscle is to refrain from strenuous exercise until the inflammation has resolved
I have compiled a list of useful references but can not attach it here - if you message me I could send it privately
Thank you so much. I haven't been told Takotsubo causes inflammation, only enlarged/weaker distinctively shaped left side of heart. As I have felt reasonably OK, certainly no breathlessness or chest pain etc I am attending cardio rehab once a week and I am walking in the hills near where I live 4-5 times a week. This doesn't seem to cause any issues and I generally feel good afterwards but I am always concerned whether this is right or good for me and whether I should actually be resting more instead. But when I ask the heart nurse and the cardio rehab team (fitness instructor and nurses)they say as long as I feel ok its ok to exercise and raise my heart rate as long as I slow down and stop if I get any symptoms. Having said this I don't think they realise how steep the hills are or how much I am doing. I want to do what will most help my recovery but it seems no-one really knows. The MRI which might help determine what caused the heart failure is still six months away and it is 2 months since I was discharged to wait for it. 8 months is a long time to not know if I am doing the right or the wrong thing for my heart. I will see if I can find the list of references you mention on the Facebook page. Thank you again for your time and sharing your knowledge. It does worry me that everyone is treated the same regardless of the fact that we are not all the same.
the inflammation from takosubo and myocarditis can take several months to resolve - twoo months is early days for many with either condition in my experience
Last June my husband found me unconscious. He called neighbours for help and called for an ambulance. When I became conscious I was panting and sweating heavily. It was thought that I was having a heart attack, though I was sure it was severe indigestion! My bra felt really tight and waistband uncomfortable. After a few hours and checks in A and E all tests seemed OK and they were agreeing it was probably indigestion. Just one final blood test to come which then showed raised Tropon8n levels indicating a heart attack. Was admitted to hospital, but scan next day revealed heart scarring but no blockages to my arteries so they suspected Minoca. Angiogram did not show enough to shed any further light on what had happened so I was sent home with suspected Minoca and a date for cardiac MRI 3 weeks later.The advice was to not exercise or carry anything heavy, just gentle walk fir 2 minutes and very gradually increase the length of the walk but listen to my body and not push myself.A week after the MRI scan I was told it was myocarditis and to stop all meds. The advice was the same as before re exercise just slow, gentle daily walks gradually increasing the distance and pace. After 3 months (now walking for 20 minutes) I had an echocardiogram which showed my LV function had improved and the cardiologist said I should exercise. I went on the cardiac rehab course which was excellent and at the end of the course was feeling much fitter and healthier. I joined a gym to carry on the healthy regime but sadly have now had a bad arthritic flare up and can barely walk, but that is another story!
Legoladd it sounds as if you are doing a fair bit of exercising and suggest you talk to the cardiac nurses from the rehab team or phone the British Heart foundation for advice. It is a shame you have to wait so long for your cardiac MRI, milkfairy suggests asking for a cancellation which seems a good idea. The uncertainty is very worrying. I hope you get answers to your heart condition and the support that you need.
Thanks for replying. And good to hear you have recovered well. It is the waiting and not knowing because of the NHS delays for MRI that is so hard. I said I would accept any cancellation 2 months ago but hasn't helped and after two months the waiting list is still six months! I am so worried I may have made things worse but the heart nurse and cardio rehab team told me exercising was fine as long as I felt OK and didn't get breathless or get chest pain. No-one has told me I need to rest or avoid exertion. I am on the standard treatment and rehab offered to everyone even though I didn't have a traditional heart attack.
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