Hi there. I am in my early 50s and had a MINOCA two weeks ago. Still suffering with chest pain and feel let down by NHS. I can relate to how you feel. It’s all overwhelming and medical support seems limited.
Hope you start to turn a corner very soon and it’s a positive outlook going forward.
I’m afraid our Health Service is even falling short now in acute and Emergency services, going by regular comments here. It’s a scary prospect for heart patients, like yourself Patty. We can’t depend on the safety net we were bought up with. It saved my life, but now it’s just not there reliably any more.
Hello Patty2486,
I am sorry to hear you have experienced a Myocardial Infarction non obstructive coronary arteries, MINOCA.
Have you been told the cause of your MINOCA?
Possible causes as Spontaneous coronary artery dissection SCAD, microvascular dysfunction or vasospastic angina.
It's important to know what caused your MINOCA so that you can receive the correct treatment.
I have lived with vasospastic angina for 10 years. I was admitted to hospital with a suspected heart attack.
I was told incorrectly, I couldn't have had a heart attack or angina because my coronary arteries are unblocked. I now know otherwise.
I had to be persistent to get my diagnosis.
I now have a very supportive Cardiologist providing my ongoing care. I am admitted to hospital at least once or twice a year.
Have you got a follow up appointment booked?
Cardiac Rehab arranged?
If your chest pain continues I suggest you contact your GP, Cardiologist or Cardiac Rehab team.
I hope you are able to access better care soon.
Thank you for message and advice. Still waiting for MRI but they think it’s being caused by heart spasms. Chest pain been awful and I went back to A and E on Saturday. They suspect I’ve also got prinzmetal angina? They’ve now put me on diltiazem hydrochloride. Still in pain but milder today so far.
Going to chase up MRI tomorrow. No advice been given other than wait for your MRI and if in severe pain go to A and E. saw my new GP today )not long moved back to area) and she was very nice. Advice see how new tablets go and if they aren’t working come back to her.
It feels like if you don’t have a blocked artery what’s all the fuss about? Along with severe chest, arm and shoulder pain I had weird heart jumps just as I was falling asleep the other night. It felt as if my heart stopped for a second (felt a weird and sickening black sinking feeling) and me waking up started my heart again. Happened 3 times over a few hrs. Strangest and most frightening feeling I’ve ever had!
Sorry all sounds very dramatic and self absorbed. I’m usually a no nonsense fit and healthy person who gets on with life.
Appreciate all the advice as Indont know which way is up at the moment.
Vasospastic angina is the term now being used rather than Prinzmetal angina. I have vasospastic angina, I have transient constrictions of my coronary arteries. It feels like being in labour for me.
Coronary vasospasms and microvascular angina can cause prolonged, severe, debilitating chest pain. You are not being dramatic.
Diltiazem is a calcium channel blocker and helps reduce the coronary vasospasms causing the angina.
A cardiac MRI can diagnose microvascular dysfunction which causes the microvascular angina.
My vasospastic angina was confirmed by a specialised angiogram.
The BHF has some information about vasospastic angina.
bhf.org.uk/informationsuppo...
You may find this website helpful too.
internationalheartspasmsall...
There are several of us on the forum who live with microvascular or vasospastic angina.
Many of us, sadly, have had a bumpy patient journey. Largely due to the lack of knowledge about MINOCA and vasospastic angina.
It has improved since my furst admission 10 years ago.
Thank you for the links and explanations. Helping me to process things and reassuring me I need to push for answers. I hope you don’t mind if I come back to you with questions going forward? Particularly before the MRI?
Very big thanks again.
Just to add to stickyfingers comment who seems to have edited their orginal post.
The International Heart Spasms Alliance is a great source of information.
It was created by 4 patients with over 50 years combined experience of living with microvascular dysfunction and coronary vasospasms. 2 of the founders have had confirmed MINOCAs.
IHSA is included on the Lancet Women and Cardiovascular Disease Commission Report's website.
The website has several articles about MINOCA.
youu might want to take a look at some of the info from INOCA International inocainternational.com/
Just curious why you have edited your reply ?
i edited my original comment because i realised the IHSA had already been mentioned, it seemed pointless to repeat the good tip
Do you also live with Microvascular or vasospastic angina?
There's quite a few of us on the forum now, living with non obstructive coronary artery disease NOCAD.
i had a Takotsubo episode - but am in another group (for Takotsubo) where some members have MVD, Coronary Artery Spasm and a whole range of other issues
I know there is a fantastic Facebook group for people living with Takostubo syndrome.
There are several long established Facebook groups for Microvascular dysfunction and coronary vasospasms associated with the International Heart Spasms Alliance.
Unfortunately there is one Facebook group that does not allow the sharing of information from any other source other than from INOCA international.
This I feel is very sad and why I am hesitant to recommend this group to others.
I know nothing about the INOCA Group, but th II website I referred to has a lot of useful info which is accessible to anyone
Maybe only patients living with microvascular and vasospastic angina can make a judgment about how useful a particular resource is to them?
The INOCA international website at one point had 3 videos posted by a Doctor who was giving false information about ivermectin as a possible treatment for co*id and other disinformation.
There is very little information about vasospastic angina or MINOCA on the website.
Nothing about the Lancet Women's Cardiovascular Disease Commission Report.
I live with vasospastic angina and I found the information on the BHF website much more relevant as well as the International Heart Spasms Alliance website which was actually written by patients for patients, reviewed by the Cardiology supporters.
I like the fact it is created by a group of patients who actually live with the condition.
i was simply pointing out a site with information, some of which i know to be from recognised specialists - it's up to those who read it to decide how useful or reliable it is
Hi Patty, welcome to the forum. I too had a MINOCA, and your story sounds like mine. Good luck with getting answers, as I never did get a diagnosis as to why I had a MINOCA. I was treated like I never had a 'proper' heart attack, so thank heavens for Milkfairy, who has helped me a lot. Keep us posted. Xx
Thks for your message Quiltingqueen. I’m quickly begging to realise that if I don’t push for answers I won’t get them. So lovely people reaching out who know what you are going through. Everyone’s kindness and advice is greatly received. Xx
wind / burp with heart rate issues 
Anxiety following TIA end of July, has anyone had similar?
Booster After Heart Issues
Anxiety v cardiac issue? 
Alivecore Kardia Machine or similar.
