MINOCA: Hi, I am Christine and I have... - British Heart Fou...

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MINOCA

Musicl profile image
16 Replies

Hi, I am Christine and I have been diagnosed with MINOCA and I am in Limbo, as little is known about this disease. Is anyone else in the same position?

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Musicl profile image
Musicl
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16 Replies
Milkfairy profile image
MilkfairyHeart Star

Hello Christine

Welcome to the forum.

There are a few members of the forum who have experienced a Myocardial infarction non obstructive coronary arteries (MINOCA).

I was admitted to hospital 8 years ago with a suspected heart attack which turned out to be vasospastic angina a possible cause along with Microvascular dysfunction and Spontaneous Coronary artery dissection of a MINOCA.

Have your Cardiology team identified the cause of your heart attack so you can receive the appropriate treatment?

MINOCA along with Ischaemia non obstructive coronary arteries (INOCA) due to Microvascular dysfunction and vasospastic angina are under recognised conditions so it is good to hear that you Cardiology team have diagnosed yours.

The BHF have this information about Microvascular and vasospastic angina unfortunately they at present have no information about MINOCA.

Living with a poorly understood and recognized condition can be challenging!

bhf.org.uk/informationsuppo...

bhf.org.uk/informationsuppo...

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

Musicl profile image
Musicl in reply toMilkfairy

Hi Milkfairy

Many thanks for your reply. I was also admitted with a suspected heart attack. I had chest pains, and the troponin levels were very high, but when I had the angiogram, there had been no damage to the heart muscle and the arteries were clear. I had an MRI and no scarring showed up, but the consultant made the point that there had maybe been a blood clot which had caused the troponin levels to rise and would account for the chest pain. The only diagnosis he could give was MINOCA, but that little was known about this condition. The medication that I am on is Clobidogel, Losartan and Rosuvastatin. I was also given aspirin, which I had to stop taking because of stomach problems, also Bisprolol (Beta blocker) which I had to stop taking because it made my asthma worse. I have had a lot of blood tests done as I feel extremely tired, but the bloods were OK. I think that the medication is medication is making me tired, but the consultant says that it is probably the pain killers that I am on for my arthritis causing the tiredness. I still think it is due to the heart meds. It is the not knowing what really happened that I find hard to live with.

Milkfairy profile image
MilkfairyHeart Star in reply toMusicl

I acknowledge how the uncertainty of not knowing what caused your heart attack is so unhelpful.

I had a very specialized angiogram to diagnose my vasospastic angina.

I suggest you ask your Cardiologist whether they have considered other causes of a MINOCA such as Vasospastic angina.

There is another acute heart condition that causes chest pain and high levels of troponin

Takostubo cardiomyopathy

cardiomyopathy.org/takotsub...

I hope you get the answers you need soon.

Musicl profile image
Musicl in reply toMilkfairy

Thank you for the very useful information, I will have a word with my Cardiologist about these other conditions you have mentioned.

Just one more question, what medication are you taking for your Angina?

Milkfairy profile image
MilkfairyHeart Star in reply toMusicl

Hi Christine

I take 2 types of calcium channel blockers to try and control my vasospasms.

Nicorandil Nitrates, clopidegrel and a statin.

Beta blockers are contraindicated if you have vasospastic angina they make the spasms worse.

The treatment for microvascular angina is differs depending whether it is due to microvascular dysfunction or microvascular vasospasms.

Before you consider taking any supplements I suggest you discuss this with your Cardiologist first.

Musicl profile image
Musicl in reply toMilkfairy

Thank you Milkfairy, good advice.

Electricbike profile image
Electricbike

Hi ChristineK,

The day after my (non MINOCA) HA last May I was asked to take part in some research into MINOCA. I was a control. I had brain and heart MRI SCANS. This was repeated 6 months later. The results will be published later this year and look interesting. Just wanted to say that there are investigations into this condition, so hopefully it will not be so mysterious.

Cheers

Musicl profile image
Musicl in reply toElectricbike

Thank

Musicl profile image
Musicl in reply toElectricbike

I

Musicl profile image
Musicl in reply toMusicl

Thank you for the information, hopefully there will be a greater understanding of tnis condition soon.

Musicl profile image
Musicl in reply toElectricbike

Thank you for the information, hopefully there will be a greater understanding of tjis condition soon

Milkfairy profile image
MilkfairyHeart Star in reply toElectricbike

Hi Electricbike Was the study you took part in lead from Leeds University?

I know there is a Cardiology Prof who is researching MINOCA in Leeds .

Electricbike profile image
Electricbike in reply toMilkfairy

It was at the Bristol Heart Institute. Might be connected?

Musicl profile image
Musicl in reply toMilkfairy

That's interesting, as I am in Leeds and I am under Professor Alistair Hall at St. James Hospital, and being a teaching hospital, is attached to Leeds Uni, but he never mentioned anything about any research going on around here.

I would like to find out about it.

dunestar profile image
dunestar

Hello ChristineK. I have INOCA but I've never had a Myocardial Infarction. I take 30mg isosorbide mononitrate extended release to help my blood vessels to dilate, an ACE inhibitor (Ramipril) and Atorvastatin (20mg).

I was diagnosed after a stress echo showed widespread ischaemia but a subsequent angiogram was clear.

I hope you are able to pin down what is going on. I was on bisoprolol for a while but I hated it. One thing I have started taking recently is CoQ10 which I find really helps with tiredness which can be caused by statins.

Musicl profile image
Musicl in reply todunestar

Hi Dunestar,

Thank you for your reply.

I doubt that tiredness is coming from statins as I am on such a small dose, only half a tablet daily and I have been on it for over six months.

I have only been on Losartan for blood pressure for two months, as I could not tolerate Ramopril, so had to come off it.

I think maybe Losartan is the culprit, but I also started on antidepressant Citalopram around two months ago, so it could be that, although it is the very lowest dose that I take.

I am going to have another word with my GP next week.

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