Prinzmetal Angina

I have this rare, or at least rarely diagnosed, condition which causes my arteries to spasm. I feel quite isolated. It's difficult to find the most suitable medication and I feel unwell a lot of the time. Do any other members have this condition? It's also known as coronary artery spasm or vasospastic angina.

[Milkfairy Heart Star]

Hello Dickyfreed,

Welcome to the forum.

I have lived with Vasospastic angina for 11 years. Vasospastic angina is the term now more commonly used in research papers and specialists in this area of Cardiology.

I was admitted to hospital 11 years ago with a suspected heart attack, however told incorrectly I couldn't have angina or a heart attack.

My vasospastic angina was confirmed by an angiogram when they injected a chemical acetylcholine into my coronary arteries during an angiogram.

I experienced my usual chest pain, had ECG changes and my coronary arteries went into spasm.

The umbrella term to describe vasospastic angina and microvascular angina is ischaemia non obstructive coronary arteries INOCA.

There is alot more research into this type of heart disease since my diagnosis.

I have found that there is a growing awareness of vasospastic angina amongst the medical staff too.

I end up in hospital once or twice a year.

They tend to send the medical students to talk to me to learn about vasospastic angina.

The symptoms of microvascular and vasospastic angina can overlap.

I suggest you ask your Cardiologist to consider carrying out the tests to see if your symptoms are due to microvascular or vasospastic angina.

The treatment options offered are different for microvascular and vasospastic angina.

It can also take time to find the best combination of medication that will work best for you.

The BHF has this information about microvascular and vasospastic angina.

bhf.org.uk/informationsuppo...

bhf.org.uk/informationsuppo...

The BHF information gives a link to a long established and well moderated Facebook group.

You may find this website helpful which was created and written by four patients with over 50 years combined experience of living with microvascular and vasospastic angina.

They are supported by 30 world expert Cardiologists.

It gives lots of practical advice about how to live well with these conditions.

internationalheartspasmsall...

I suggest you keep a diary of your activities, the weather and medication.

See if you can spot any triggers for your chest pain.

My triggers are the cold, emotional, mental and physical stress.

There are quite a few other forum members who live with either microvascular or vasospastic angina and I am sure they will be along to share their experiences with you too.

I hope you will feel less isolated now that you have joined us in a club that perhaps none of us would really want to join.

[Hidden in reply to Milkfairy]

Thank you Milkfairy. Fortunately I do know all the information you kindly provided. It's just a lonely feeling. My cardiologist still refers to it as PA so I still use the term. I was lucky to have his diagnosis as a couple of elderly locum cardiologists I encountered on follow-up appointments have been very sceptical and not at all helpful. My history of it was similar to yours. Two suspected heart attacks, one of which was in hospital, an abnormal ECG etc. Not well much of the time and causes sleepless nights but I make the most of the better times. I was a member of the Heart Spasms Alliance but had a dispute with them and left the group. Very unpleasant admins. Thank you for reaching out.

[Milkfairy Heart Star in reply to Hidden]

I am sorry to hear you had the experience you had. The International Heart Spasms Alliance is not a Facebook group and doesn't have members.

There are several other Facebook groups where you may find support.

As you are still having such a challenging time, it might be worth asking for further testing.

I was presumed to have microvascular angina at first as it's much more common than vasospastic angina.

I was given beta blockers as a result which are contraindicated in vasospastic angina and ended up in hospital with much worse coronary vasospasms.

Microvascular angina can in be diagnosed by non invasive imaging such as cardiac MRI. A stress echocardiogram can be helpful too.

I found attending a Pain Management Programme helpful too.

Perhaps ask your GP to refer you?

[Hidden in reply to Milkfairy]

Sorry, got the name of the group wrong. You're right, it wasn't the International Heart Spasms Alliance. Not telling porkies, just a bit forgetful. Thanks for your advice but I'm not sure how far I can push the NHS at the moment. I have a very supportive GP and recently had a 72 hour Holter because palpitations are bothering me. Not had the results yet. The cardiologist who diagnosed my condition is very good but as he's the head of the department and working several hospitals I don't always manage to see him. If things don't get any better I will ask for further investigations. Thanks a lot.

[Tos92]

Hi   Hidden

Welcome to the forum.

You’ve already been given some good information so there’s not a lot more that I can add.

My personal journey of vasospastic angina came about after I had a MINOCA (myocardial infarction in non-obstructed coronary arteries) last year. It was found on an angiogram that I have a myocardial bridge, an artery which tunnels into the heart muscle instead of sitting on the surface. This had spasmed triggering the heart attack.

I have daily chest pain, upper back pain, and arm pain. I feel as though my heart is constantly being pinched, but like you say, I also try and make the most out of the better days.

There is a Facebook group that I am on which you might like to join. I’ll leave the link below, including the link for their website if you are interested.

facebook.com/groups/2879606...

inocainternational.com

I believe there are a few others with similar conditions to ours, so I hope they will also offer their support too.

All the best.

Tos

[Hidden in reply to Tos92]

Thanks. Nice to make contact. I was on a Facebook support group before but it was difficult to relate to some of the members from other countries where the treatment and drugs are very different. Plus I said something very innocently which they didn't like so I left the group. I just want to feel reassured that others out there know what I'm experiencing. It's reassuring to know you're not alone. Nice of you to respond.

[Dollywow1999]

What exactly happens to you when this happens cause my dr will say it's angina happening yo be but I'm unsure about that.....it's not a chest pain or tightness when it hits me it's a throat pain like tightness spasms heart skipping beats like crazy then my pulse rate is 43....ughhhh....then this episode passes after about 5 minutes seems like forever....is this what you experience

[Hidden in reply to Dollywow1999]

Not exactly like that but I do have palpitations and sometimes feels like it's in my throat. I have a lot of chest and back pain as well. Keep pestering your doctor for a proper diagnosis. Have you had an angiogram to show any blocked arteries? I had one but I had no blockages. My ECG was abnormal and I had two heart spasms, just like heart attacks and spent eight days in hospital. Read as much as you can about heart problems and don't be afraid to ask questions.

[ControlGroup]

Hi there.

I have Prinzmental Angina and microvascular angina as well, diagnosed by provocation tests for both conditions.

It took many months to find the right combination of medications to prevent the frequent spasms, and give me a better quality of life.

I am currently taking Verapamil morning & night and use nitroglycerin patches for any breakthrough angina. I am also taking a low dose of Perindopril despite not having high blood pressure. This combination has at last reduced angina frequency considerably

A note: I was prescribed low dose aspirin for blood cancer and it provoked really intense Prinzmetal angina that nearly sent me to hospital. Apparently aspirin can do this to Prinzmetal patients. Good to know!

I hope your cardiologist can help you find the best medication to give you some ease soon.

[Milkfairy Heart Star in reply to ControlGroup]

Hello ControlGroup,

Welcome to the forum,

The original poster has left the forum so will not be able to see your message.

I had my vasospastic angina confirmed by an angiogram with acetylcholine about 10 years ago.

I noticed you're based in Australia. Here in the UK, Europe and increasingly elsewhere the term coronary vasospasms and vasospastic angina are being used.

I am prescribed clopidogrel rather than aspirin.

Aspirin, some antibiotics can cause an allergic reaction leading to coronary vasospasms, known as Kounis syndrome.

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

Here's an article and Podcast from Prof John Beltrame a very experienced world leading expert in our heart condition based at Adelaide University.

heart.bmj.com/content/109/1/70

The BHF website has this information which you may find helpful.

bhf.org.uk/informationsuppo...

There are several members of the forum who also live with microvascular and/ or vasospastic angina.

[ControlGroup in reply to Milkfairy]

Hi there.

Yes in Australia we also use those terms. I referred to it as Prinzmetal for clarity because the OP was using that term.

It was interesting that the haematologist was unaware of the potential of aspirin to provoke vasospasm. In the future I will be checking all meds with the cardiologist.

Thanks so much for the links. I look forward to reading them. Much appreciated.

Weirdly reassuring to hear that others have the double-trouble angina. My interventional cardiologist was so excited to have someone react to both provocation tests. Me less so!

[Milkfairy Heart Star in reply to ControlGroup]

Some types of chemotherapy can trigger coronary vasospasms too.

Have you ever been reviewed by cardio oncologist?

Wouldn't be lovely to be boring and not interesting.

When I am in hospital they send the medical students to see me now.

I am often greeted by the doctors with the words 'ah your Prof's special patient!'

Are you aware of this website? Written by four patients with over 50 years combined experience of living with microvascular and vasospastic angina.

internationalheartspasmsall...

[ControlGroup in reply to Milkfairy]

wow I didn’t know there was such a thing as a cardio oncologist! Thank you so much. I’ll def follow up.

I can completely relate to being the teachable moment in the Emergency Dept.

I hadn’t seen that group but will check it out. Many thanks for the tip.