Prinzmetal Angina: Hello All, This has... - British Heart Fou...

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Prinzmetal Angina

DJ3271 profile image
35 Replies

Hello All,

This has been Hell. I finally got the diagnosis I knew I had. Extreme Running and energy drinks caused Coronary artery spasms. I am on amlodipine and a statin. My heart rate and BP are so low by nature of being a runner. I am on medication to raise my BP. I feel lethargic and icky. Has anyone had any procedures to help? stunting, Nitroglyrine injections? I am new to this disease. Any insight would be so greatly appreciated!!!! TUSM!! Also, are there periods of dormancy?

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DJ3271
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35 Replies
Milkfairy profile image
MilkfairyHeart Star

Hello DJ3271,

Welcome to the forum.

I have lived with Vasospastic angina the term now being used rather than Prinzmetal or Variant Angina, for 10 years. Here in the UK and Europe the term Prinzmetal angina is not used very much.

Vasospastic angina along with microvascular angina are types of angina/ ischaemia non obstructive coronary arteries ANOCA/ INOCA or non obstructive coronary artery disease, NOCAD

How were you diagnosed?

My coronary vasospasms were confirmed by an angiogram with acetylcholine which induced my coronary vasospasms.

The usual treatment is with medication to relax the coronary blood vessels to help prevent them constricting in vasospasms.

Stents are not usually recommended.

Most medications because they relax and dilate the blood vessels can lower a person's blood pressure.

The BHF has this information about Vasospastic and Microvascular angina.

bhf.org.uk/informationsuppo....

bhf.org.uk/informationsuppo...

There is also this website which you may find helpful too.

internationalheartspasmsall...

Vasospastic angina waxes and wanes in some people. Others have a few episodes, some people get better and have periods of few symptoms. Then there are some who live with frequent debilitating symptoms that means they need to be admitted to hospital for treatment with IV GTN/ nitrates to stabilise their symptoms.

Have you got the support of a knowledgeable and sympathetic Cardiologist?

DJ3271 profile image
DJ3271 in reply toMilkfairy

THANK YOU FOR RESPONDING!!!! My cardiologist is HORRIBLE. I suffered for 2 years with him. He did not want to prescribe me meds because of my low blood pressure! I literally had a meltdown and told him I have no quality of life. I am on amlodipine, but it is not totally knocked out. Can one take ISOSORBIDE MONONITRATE in conjunction? I have an appointment with a Prinzmetal Angina specialist on Friday. I am counting the minutes.

DJ3271 profile image
DJ3271 in reply toDJ3271

I will use Vasospastic (not Prinzmetal). A side note, my husband and I lived in London for 7 years while he worked for Banker's Trust. The best times of my life.

Milkfairy profile image
MilkfairyHeart Star in reply toDJ3271

I suggest when you see the Cardiologist who understands vasospastic and microvascular angina that you ask for proper testing to confirm your diagnosis.

The symptoms of microvascular angina can be very similar to vasospastic angina, however the treatment is different.

Once you have a confirmed diagnosis you can then discuss with your Cardiologist the best combination of medication that will suit you best as an individual.

All medications have side effects and sometimes it's a balancing act between the side effects of the medication and symptom management.

DJ3271 profile image
DJ3271 in reply toMilkfairy

Milkfairy,Do you have days that are pain free? Can you tell me what meds you take? I am sorry! If you feel I am asking invasive questions, I understand. I had the stress test, and the one with the die injected. Thank you for listening to me. I wish I could give you a hug!

Milkfairy profile image
MilkfairyHeart Star in reply toDJ3271

As with all conditions there is spectrum of how people are affected .Some people have few symptoms some lots.

I am badly affected, however that's me. It doesn't mean it will be your story too.

I do not go 24 hours without chest pain. I am frequently woken in the night with chest pain.

Have a look at the links I sent you especially the website which has lots of research articles as well as patient stories.

Then write a list of questions you feel you want to ask the Cardiologist you are seeing on Friday.

Perhaps keep a diary and see if you can learn your triggers

Mine are the cold, emotional and mental stress. Also doing too much and becoming overtired

Be patient with yourself and give yourself time to learn to live with your vasospastic angina.

Etblue profile image
Etblue in reply toMilkfairy

Hi Milk fairy, l love reading your post s and the steep learning curve re angina.I notice that I can identify with you regarding cold and mental stress.

Plus, just the other day after some emotional stress plus heat and walking up a low incline. I had an angina episode.

I am silly, l know, but l was a bit embarrassed about this. Thanks again for your input and care on this site.

Take care.

DJ3271 profile image
DJ3271

Oh Lovie! I am so sorry! I get awakened at night as well. Thanks again for your kindness!!!

Salihyuksel67 profile image
Salihyuksel67

Hi-Energy drinks are very dangerous I use a Long time Redbull and now I have had a triple bypass please stop drinking energy drinks they all cause blockage

DJ3271 profile image
DJ3271 in reply toSalihyuksel67

YES! Thank you! I found out too late!

nilmonisikdar40 profile image
nilmonisikdar40

Hello, I agree with Milkfairy about everything she has said about this condition. However, nitroglycerine spray under the tongue can help not injection. More research is needed to know about this condition. I am interested to know why you need medication to raise your BP? I am waiting for a stress echocardiogram which will confirm if I have vasospastic angina but things move so slowly in N.H.S.

Milkfairy profile image
MilkfairyHeart Star in reply tonilmonisikdar40

Hello Nilmonisikdar40,

As someone who has lived with vasospastic angina for 10 years, here's my and others experience of sublingual GTN spray.

The latest research is suggesting that sublingual GTN spray or extended release isosorbide mononitrate extended release tablets, may not be effective in people living with microvascular dysfunction.

GTN can also cause rebound vasospasms in people living with vasospastic angina.

I don't use GTN spray for this reason, it works briefly then I have even worse chest pain, as my blood vessels constrict as it wears off.

IV GTN is the standard treatment of vasospastic angina to help stabilise severe episodes coronary vasospasms, which as well as being debilitating, can if untreated lead to a heart attack or heart rhythm problems.

This happened to me recently and I spent 8 days in hospital on IV GTN and morphine to stabilise my vasospastic angina.

This is the only time I am painfree.

I also suggest you contact this research team for more information about trials into diagnosing microvascular and vasospastic angina.

A stress echocardiogram is not the usual way to diagnose microvascular dysfunction or vasospastic angina.

The only way to confirm a diagnosis of vasospastic angina, is by an invasive angiogram using a chemical acetylcholine to see if it causes temporary transient contrictions of the coronary arteries or microvessels.

isrctn.com/ISRCTN94728379

P0rtnahapp1e profile image
P0rtnahapp1e in reply toMilkfairy

I was given GTN by my GP who didn’t realise that I had very low bp, and this obviously opened my blood vessels and lowered my bp even further, resulting in me being blue lighted to hospital.

DJ3271 profile image
DJ3271 in reply toP0rtnahapp1e

Oh My! They should have checked your BP before prescribing anything!

Milkfairy profile image
MilkfairyHeart Star in reply toP0rtnahapp1e

Oh my goodness!

P0rtnahapp1e profile image
P0rtnahapp1e in reply toMilkfairy

Actually it was a blessing in disguise as I had called in to the surgery as I felt very unwell and it turned out to be sepsis, which then turned into endocarditis. I’d only called in because I thought my symptoms were from my AF and DCM. Luckily her mistake got me into hospital very quickly and possibly saved my life.When I was discharged nine weeks later she apologised for her error and I thanked her for it!!

Milkfairy profile image
MilkfairyHeart Star in reply toP0rtnahapp1e

Good to hear you got a good outcome and an apology!

nilmonisikdar40 profile image
nilmonisikdar40 in reply toMilkfairy

Hi Milkfairy, You have thoroughly done your homework and information given is so helpful. My cardiologist is just buying time to do a coronary angiogram and if initial stress echocardiogram is positive, he will do a coronary angiogram with or without stress factor.

Milkfairy profile image
MilkfairyHeart Star in reply tonilmonisikdar40

I hope your wait isn't too long.

DJ3271 profile image
DJ3271 in reply tonilmonisikdar40

Hi nilmonisikdar40,Since I am a runner, my BP and heart rate are low by nature. The Calcium Channel blocker is lowering it even more. With the Midodrine HCL it is keeping it 90/60.

DJ3271 profile image
DJ3271 in reply tonilmonisikdar40

Midrodrine 2.5 mg 3 times a day, perks me up. Almost like caffiene

Worvera profile image
Worvera

Good morning. I’m so sorry to hear of your experiences and can sympathise. It took a long time and several hospital admissions to get my own diagnosis of microvascular angina. Milkfairy was my primary source of help once I was diagnosed so I am forever grateful to her. I had the same angiogram with a acetylcholine to confirm my diagnosis and then my medications were tweaked over months until I stabilised. I now only have to use the gtn spray a few times per week as opposed to several times a day and through the night. It is a slog to get the proper diagnosis and yes lifestyle changes have to be made but things do get better. I would encourage you to take notes to your consultation and perhaps inquire about the angiogram. Sending you strength.

DJ3271 profile image
DJ3271 in reply toWorvera

Thank you so much! Anyone take isosorbide mononitrate and Amlodipine together? I am going to the Dr. on friday and want to ask him about tweaking meds. It is heartening to hear some people feel better. I need encouragement. I feel so low.

Milkfairy profile image
MilkfairyHeart Star in reply toDJ3271

We are all individuals and respond to medications differently.

A confirmed diagnosis is the starting point.

I was assumed to have microvascular dysfunction as this is more common than vasospastic angina.

I was prescribed beta blockers which can be very helpful if you live with Microvascular angina.

However I landed up in hospital with much worse angina.

I now know that beta blockers are contraindicated if you have vasospastic angina.

It's really important to be able ti work with a Cardiologist whom you trust and have a good relationship with, to find the best combination of medication that works for you best.

DJ3271 profile image
DJ3271 in reply toMilkfairy

Milkfairy,I keep thinking of you and how you are in constant pain. I don't know you, but feel so depressed. Much love to you. Please know how invaluable you are for helping all of us. You have great purpose!

Milkfairy profile image
MilkfairyHeart Star in reply toDJ3271

Hopefully once you know why you have your symptoms you will get the treatment to help you.

I have alot of joy and happiness in my life too.

My family, my dog, garden and volunteering.

Here's my walking buddy.
DJ3271 profile image
DJ3271 in reply toMilkfairy

Oh what a beautiful boy! And the BEAUTIFUL English Countryside! Your life must be good! Thank you for sending the picture! It humanizes you! xo!

Milkfairy profile image
MilkfairyHeart Star in reply toDJ3271

Just for you here's Millie in the bluebells last month

DJ3271 profile image
DJ3271 in reply toMilkfairy

Oh! A Good GIRL!!!! Sorry!!! She is so beautiful!!!! You brought a smile to my face. I could cry! xo!🥰

richard_jw profile image
richard_jw

I had an MI 2 years ago. The RCA was blocked.After unblocking, and some months later I started to get angina. They did a "check angiogram" which showed that all the coronary arteries were clear. So came to the unscientific conclusion that it must be microvascular angina.

I could not take nitrates because of low BP, and GTN spay did not make much difference.

So they prescribed Ranolazine. Apparently it works differently, and does not lower BP (much).

I am on 500mg BD of Ranolazine, and have had no more angina in 3 months. I have not noticed any lowering of my BP.

Here is a link which talks about vasospastic angina and ranolazine.

As far as I can see, the patient was on other meds as well, and it's not clear if ranolazine was effective by itself or in combination

hope this helps

onlinecjc.ca/article/S0828-....

DJ3271 profile image
DJ3271 in reply torichard_jw

Richard,Thank you so much for this info!!!

beemiles profile image
beemiles

Hi All, I’ve recently had a ‘diagnosis’ of suspected microvessel angina, in the absence of any obstructions showing on a CT angiogram.The cardiologist has directed me back to my GP, much to his surprise, and we are now in the throws of experimenting with the default range of heart meds…isosorbide being the first, although I’ve been on carvedilol now for 18mths just to deal with tachychardia.

What I want to know is, does anyone else experience breathlessness?

Although I used to wake at night with severe chest pain, and often attended A&E at its worst, my breathlessness now gives me bigger issues especially as I’m a keen hiker, pretty fit and only 55.

My GP has requested a CPEX test, although spirometry testing confirmed good lungs.

Any thoughts?

Milkfairy profile image
MilkfairyHeart Star in reply tobeemiles

Hello,

Is it possible for your GP to refer you back to a Cardiologist who has some understanding of microvascular and vasospastic angina?

The symptoms of microvascular and vasospastic angina can overlap.

It's important to have an accurate diagnosis so you can have more targeted treatment.

Beta blockers can help people with microvascular angina however they can make coronary vasospams worse.

These heart conditions are complex and are outside the usual sphere of practice of a GP. Unfortunately many Cardiologists lack the skills and knowledge of how to accurately diagnose and help treat us as a group of patients too.

Breathlessness is a common symptom, that women in particular, with angina non obstructive coronary arteries ANOCA can experience.

I become breathless along with exertional chest pain when my vasospastic angina is becoming more unstable. It's a horrible feeling of someone squishing the air out of your lungs and not being able to breathe in.

Has anybody suggested a calcium channel blocker?

beemiles profile image
beemiles

Hi Milkfairy - thanks for taking the time to reply.I am baffled by the cardiologists thoughts on not pursuing a definitive diagnosis, on the basis that more tests are invasive and the treatments are the same for both issues (his words not mine).

So far, I’ve seen no benefits with the isosorbide, so I guess it’s onto the next thing…although I did try a small dose of amlodipine before the isosorbide and did think there was a slight improvement.

I’m heartened to hear that breathlessness is a symptom, as I’ve had little response from anyone about it during my 4.5 year journey…and it can’t be right that a 55 year old, fit person, needs to be dragged up hills!

I’ll certainly take on board your suggestion to get re referred back to a specialist cardiologist, if things don’t improve soon.

Many thanks

DJ3271 profile image
DJ3271

Milkfairy,How are you? I have been awful. Pain always present. I read online a woman refractory to the meds was given 30 mg of Prednisone and her angina subsided. Pain stopped. Anyone hear of this? TUSM!

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