Undiagnosed: Likely stress cardiomyopathy, MINOCA

[Takonoca]

I'm in my mid fifties and had an ACS event about four weeks ago (chest pain radiating in a band around my chest and back, weird electrical feelings down both brachial arteries) with raised troponin (100, raising to 1000) and spent four days in hospital. EGC showed inverted T on the bottom line of the printout. Cardiology came up with a few hypotheses along the way: right coronary artery blockage, a recent virus, a "mini heart attack," stress, genetics, pericarditis. I already had a trace of a floppy mitral valve (diagnosed 12 years ago) and echocardiogram revealed mild atrial regurgitation and septal bounce, along with aortic dilation (the extent of which was unspecified). After an angiogram revealed no clots or atherosclerosis and d-dimer levels were normal, I was discharged on bisoprolol, atorvastatin, dispersible aspirin and GTN along with my normal hypertension medication, lisinopril and amlodipine. Their current working hypothesis is "likely stress cardiomyopathy, MINOCA." Going forward, the intention is to keep me on optimal medical therapy (heart drugs) for whatever it is, of which they don't seem sure I was referred for an MRI, which happened yesterday and told that the results will take four weeks. In the meantime, as I don't have a diagnosis I have no access to cardiac rehabilitation. I have been trying to basically "wing it" with building my activity back up and can now manage about 5000 steps a day and lifting things that aren't too heavy. My discharge advice was to "take it easy for a couple of weeks." I'm worried that if I do too much, or get stressed, whatever happened could happen again. I've not even dared have a decent coffee from my coffee machine and switched to two cups of instant as a maximum each day, just in case that sets me off. I feel like I've been left in limbo. Does anyone else have experience of something similar, please?

[Milkfairy Heart Star]

Hello,

Welcome to the forum.

I was admitted to hospital in 2012 with a suspected heart attack. However, I was incorrectly told I couldn't have angina or a heart attack because my coronary arteries are unobstructed.

I was later diagnosed with vasospastic angina which is caused by transient constrictions of my coronary arteries leading to a lack of blood supply to my heart, myocardial ischaemia.

I have dynamic ECG changes such as ST elevations, depressions and T wave inversions with small rises in my troponin blood levels.

It's good to hear that your Cardiology team recognises that MINOCA can happen.

A MINOCA Myocardial Infarction non obstructive coronary arteries has many possible causes. It isn't a diagnosis as such.

The possible causes are microvascular dysfunction, coronary vasospasms, a mismatch of the blood the heart needs with what can be supplied, this can happen with arrthymias, a small piece of plaque breaking off or a blood clot blocking the coronary artery.

A Takostubo syndrome event is an acute form of heart failure which can be misdiagnosed as a heart attack.

Has your Cardiology team considered that microvascular or vasospastic angina are the possible causes of your acute coronary syndrome event?

The BHF has this information about microvascular and vasospastic angina.

bhf.org.uk/informationsuppo...

bhf.org.uk/informationsuppo...

Hopefully fishonabike will be along to give you some more information about Takostubo syndrome

I was initially refused Cardiac rehab too, but I kept asking and was offered cardiac rehab eventually.

[fishonabike]

Hello Takona, I am sorry to hear that you seem to have been left in the dark about what is happening and what to do

i had an episode of Stress Cardiomyopathy/Takotsubo (it has a number of different names!) several years ago and am now a member of a very helpful Takotsubo Support Group on facebook - i am biased but i recommend it as a friendly and wwelcoming group full of kind people who understand what you are going through as many of us have been through the same thing🙂

unfortuantely Takotsubo is not a common condition and can be tricky to diagnose, many doctors have no experience of it at all and a lot of cardiologists have either only seeen one or two or no cases, so most of them know very little apart from what they quickly look up on line!

one thing that most of the support group members realise fairly quickly is that trying to get back to normal and pushing yourself to do more is generally not helpful - rehab is rarely offered and there is no evidence that the usual cocktail of medications is of much help once you are beyond the acute phase - sorry to sound gloomy

Takotsubo causes inflammation of the heart muscle, which reduces the heart's ability to trun fuel and oxygen into the energy it needs to pump effectively - this takes time to resolve and there are no medications which are known to help speed this up - so your heart is not working properly and you have to rest and wait for it to get better - it can take much longer than the doctors predict

rather than me droning on, i suggest you dig into some of the info here : takotsubo.net/#, then either ask more questions or join the Facebook group

[Stentrunner]

I can only help in respect to rehab. I had stents fitted in the first lockdown when all hospital physio was shut down. The BHF rehab videos on YouTube are excellent, and progressive, so you can start at a level you can manage. And you can do rehab every day - I did. And 4 years later I still go back to them for exercise when weather or health issues make running difficult.