MINOCA : Im 57 and have always been fit... - British Heart Fou...

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MINOCA

Fleur57 profile image
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Im 57 and have always been fit and well. Non smoker, not overweight. Had classic heart attack symptoms 2 weeks ago. Woke up at 6am to go to bathroom got back into bed and experienced sudden crushing chest pain radiating into arm, neck, jaw. I went into my daughter's room and told her I felt unwell and couldn't drive myself to A&E! She called the paramedics who gave me GTN and aspirin. 12 lead ECG normal!Taken to hospital and all my tests were normal for my age. No blockages apart from 'mid segment muscular bridge', as this hasn't been explained to me I'm not sure what it fully means but think it may be a congenital abnormality whereby the LAD lies under some of the myocardium instead of on top. If anyone knows anything about this I would be very grateful. All other tests normal for age - cholesterol 4.7, normal echo, blood pressure good. Raised troponin of 247 was the only marker apart from chest pain. I have been diagnosed with MINOCA (found this out on my notes!). Told by cardiologist that they don't know what caused my apparent MI. Fortunate enough to have MRI before being pretty much booted out on a load of tablets. Had 20 minutes with rehab nurse who didnt know what to do with me. Advised by cardiologist to take a week off work and if MRI normal then stop meds!

Having read on the forum that vasospasm is worsened by beta blocker (which I'm taking) I'm worried in case my symptoms come back. And like someone else on here I am in a confused limbo until the MRI results come back. As crazy as this sounds I feel like a 'fake'. I have become acutely aware of my heart which feels bruised and seems to let me know it's there every once in a while, I also feel afraid that this is going to happen again. Of note I've been under masses of stress and have a significant family history of CHD. And does anyone know about SCAD heart attacks??

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Fleur57
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Milkfairy profile image
MilkfairyHeart Star

Hello Fleur57

Welcome to the forum.

About 6 % of heart attacks are due to a Myocardial infarction non obstructive coronary arteries MINOCA .

The most common causes are Microvascular dysfunction, vasospastic angina, myocardial bridge and Spontaneous coronary artery dissection SCAD.

A Myocardial bridge is when one of the coronary arteries is buried in the muscle wall of the heart rather than resting outside on the surface of the heart.

There is unfortunately no information on the BHF website about MINOCA at the moment.

There are 2 closed Facebook groups for one for SCAD Beat SCAD and Myocardial bridge.

There are a few forum members who live with the conditions and hopefully they will be along to share their experiences with you.

I would suggest that you ask for further tests to rule out Microvascular dysfunction and vasospastic angina as a possible cause of your heart attack which have different possible treatments.

If necessary ask to be referred to a specialist in Microvascular dysfunction and vasospastic angina

This article gives some further information which may help.

ahajournals.org/doi/full/10...

When I have had a really bad episode of vasospastic angina my heart feels bruised like a horse has kicked me in my chest.

An imprint of pain which can last for a while.

I wound also suggest you need more time off from work to recover both physically and emotionally from your experience.

Perhaps talk to your GP to be given some more time off work and see what further psychological support is available for you.

The BHF helpline Cardiac nurses are another place to go for information and support.

0300 330 3322

Good luck and please don't feel you are alone or ' faking it' there are lots of very friendly supportive forum members.

Milkfairy profile image
MilkfairyHeart Star in reply toMilkfairy

Another thought have a look at this information about Takotstubo cardiomyopathy

cardiomyopathy.org/takotsub...

Fleur57 profile image
Fleur57 in reply toMilkfairy

Hello and thank you for getting in touch. I dont have takotsubo but I do have a muscular bridge. I suspe t it was SCAD and I have been on their website and they do recommend that I ask for a referral to scad unit at Leicester and colleague also advised same re microvascular dysfunction. I have a telephone consult with the cardiologist on Wednesday and I am going to write my questions down so I can get the answers I need. What would you suggest I ask? And I totally get the 'imprint'pain, it is a strange sensation.

Milkfairy profile image
MilkfairyHeart Star in reply toFleur57

Hi

The Cardiologists at Leicester who run the SCAD clinic both have an interested in Microvascular dysfunction.

There is also a SCAD service at Chelsea and Westminster.

beatscad.org.uk/scad-nhs-cl...

I would ask your Cardiologist whether he/ shehas seen the latest consensus document from the European Association of Percutaneous Cardiovascular interventions.

eurointervention.pcronline....

Also this recent research.

ahajournals.org/doi/full/10...

ncbi.nlm.nih.gov/pmc/articl...

Myocardial bridging is associated with Microvascukar angina.

heart.bmj.com/content/105/S...

I would also ask why the Cardiology team had not discussed your diagnosis of MINOCA before you were discharged with you.

What experience has he/ she got in caring for patients with SCAD, Myocardial bridging , Microvascular dysfunction and vasospastic angina.

From the advice to go back to work and stop taking the medication if your MRI is normal perhaps not as much as you need as a patient.

I would ask for a referral to Leicester too.

Good luck and do say how you get on

Fleur57 profile image
Fleur57 in reply toMilkfairy

Thank you so much you have been really, really helpful.

Milkfairy profile image
MilkfairyHeart Star in reply toFleur57

There are 2 other much more established closed Facebook groups which I would recommend too.

Heart Whisperers and Cohorts and Prinzmetal angina / Coronary Artery Spasms support group

facebook.com/groups/6267594...

Fleur57 profile image
Fleur57 in reply toMilkfairy

I have just had my consultation with the cardiologist and thank you so much Milkfairy for your support. He has told me that the MRI was normal, no heart muscle damage, no SCAD, no signs of MI. He has told me that it could be vasospastic angina or microvascular dysfunction. I have asked for a referral to SCAD clinic and told him that they have an interest in microvascular dysfunction - he seems to know them well but did say that he thought they only specialised in SCAD. He said he will write to them anyway and also keep me under his department. The plan now is to come off the nicorandil (which was giving me a bad headache) and clopidogrel but stay on aspirin, stop the Atorvastatin (my cholesterol is normal), stop the bisoprolol but start propranolol as I do suffer with anxiety symptoms. Lockdown plus this episode has made it 1000 times worse. Also he said to keep the GTN and use is as and when if I have another attack. They will review me in a few months and I told him that I will have my cholesterol rechecked at my Gp's in 3 months time and if it it raised I will consider going back on the statin. I can't remember everything that we discussed but he did apologise for his lack of communication and making assumptions about my lifestyle when I was in hospital. So I am pleased that I don't have a diseased heart or MI but this I really believe is a warning to me to make my life less stressful and more fulfilling.....

dunestar profile image
dunestar

Oh dear, Fleur57, it's difficult to read your account but sadly it's not untypical. It's OK for a cardiologist to say they don't know what caused your MINOCA. But if they don't know the next step should be to put in place a plan to get to the bottom of what is going on. It's tough having to advocate for yourself when you are feeling unwell and anxious. As Milkfairy says it would be good to have further tests to establish whether or not MVA and/or vasospastic angina are in the frame. There is a closed Facebook Group for these conditions - Microvascular Angina, Coronary Artery Spasm(Vasospastic) & CMVD Community. I wish you well in getting to the bottom of things and finding the best combination of medication which will support you.

Fleur57 profile image
Fleur57 in reply todunestar

Thank you Dunestar for your support - it looks more likely that I have some kind of reactive type angina. Read my reply to Milkfairy. I am pleased to say that my heart is not diseased but obviously something unpleasant happened to me. Thank you best wishes fleur57.

Fleur57 profile image
Fleur57

Hi Milkfairy thank you for sharing. I tried to reply but I have to follow you and I'm not sure how to do that. I'm keen to find out more about both conditions. I keep getting intermittent episodes of chest pain, which haven't necessitated use of gtn yet but I do worry that something much worse is going to happen to me. I cant remember what condition he told me I had and like a lot of consultants can be a little bit vague. He seemed to dismiss some of the research and doesnt think scad clinic will see me. I just get the impression they think it's somatisation disorder of middle age women. I wouldn't wish my experience on anyone.

Milkfairy profile image
MilkfairyHeart Star in reply toFleur57

Hi Fleur you don't need to follow anyone to reply to a message.

Just go click on a person's icon and then message them .

Fleur57 profile image
Fleur57

He also said my midsection muscular bridge was very small and not necessarily abnormal or significant. If this is the case, what has caused this problem? I do hope I get a referral to leicester.. I'm still very anxious, which I think is making it worse.

Milkfairy profile image
MilkfairyHeart Star in reply toFleur57

I have sent you a message

DiddleDi profile image
DiddleDi

I had a heart attack caused by SCAD 2 weeks ago. It is a tear in an artery leading to the heart and stands for Spontaneous Coronary Arterial Disection. Cause unknown.

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