Coronary artery spasm: I've been... - British Heart Fou...

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Coronary artery spasm

unknownguy1 profile image
26 Replies

I've been recently diagnosed with coronary artery spasm and already read a few posts on here about it. I'm taking isosorbide mononitrate 20mg twice daily and put on atorvastation 80mg and 75mg aspirin. I was already taking propranolol for anxiety and lansoprazole for acid reflux. This has really taken the wind out of my sails as I'm always out and about doing things but I've barely been anywhere in the past month. The pain seems to have gotten better while on the tablets but it flares up a lot, even when resting. When I do go out, it doesn't seem as bad. I usually live alone but I'm staying with family as the anxiety is really getting to me.

Any advice would be greatly appreciated!

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Milkfairy profile image
MilkfairyHeart Star

Hello,

Welcome to the forum.

I am sorry that you have joined the rare club of living with vasospastic angina.

It can be a very bewildering experience when we are first diagnosed with a potentially life changing heart condition.

I have learned over the years to live as well as I can with vasospastic angina.

I am about to attend a conference by myself, spending 2 nights away. I will be speaking at the conference. This is something I couldn't imaging doing when I was first diagnosed.

Give yourself time.

My coronary vasospasms were diagnosed about 10 years ago with a specialised angiogram.

How have your coronary vasospasms been diagnosed?

I suggest you keep a diary to see if you can spot any possible triggers for your chest pain.

Common ones are the cold, emotional, mental and physical stress.

Smoking is a big no no as this can trigger vasospasms too.

It's also important to adopt a heart healthy lifestyle.

However learning to manage stress is important.

I find Tai Chi, yoga and Mindfulness Meditation helps me to manage the anxiety of living with a sometimes unpredictable and debilitating heart condition.

I also saw a Cardiac Psychologist who helped me gain the resilience and coping strategies to manage.

Have you asked your GP to refer you for some talking therapies or other support for your anxiety?

Beta blockers can make coronary vasospasms worse. I suggest you discuss this with your Cardiologist as you have been prescribed propranolol.

It's important though not to stop taking any of your medication without discussing this with a health care professional first.

There are other medications that you can be offered.

Usually calcium channel blockers are prescribed to help relax the blood vessels and prevent the coronary vasospasms.

Have you been prescribed a GTN spray ? This can be helpful to use to help stop a coronary vasospasm.

The BHF has this information about vasospastic angina. It includes a link to a Facebook group which you may like to join.

bhf.org.uk/informationsuppo....

You may find this website helpful. It's written by 4 patients with over a 50 year combined experience of living with microvascular and vasospastic angina. They are supported by 30 world expert Cardiologists.

internationalheartspasmsall...

There are quite a few forum members who live with microvascular or vasospastic angina. Hopefully they will be along to share their experiences with you too.

There is a hope, you are not alone and I hope with time you will gain the confidence to venture out into the world again.

unknownguy1 profile image
unknownguy1 in reply to Milkfairy

Hi thanks for the advice. Yes I'm also using GTN spray which does help. I'm not sure whether I have microvasculsr or vasospastic angina. I underwent a CT scan due to ECG changes and was diagnosed with spasms. I knew something was wrong so made multiple A&E visits before getting the scan.I've started a much healthier diet and don't drink alcohol. I've never smoked.

I think my main issue and cause is stress and anxiety as I sit down and worry about the pain coming on! I will need to contact my GP and yes maybe get my medication looked at

Dollywow1999 profile image
Dollywow1999

Look up on YouTube Statins and your brain health by I care for your brain......she can explain how certain types of statins can cause certain problems for you and dome can cross the brain barrier causing ISSUES....please watch

Dollywow1999 profile image
Dollywow1999

Also look up a lady called Live Uthing..arterial plaque....very informative lady on reversing plaques and all those things that cause our bigh bp and angina in the first place

unknownguy1 profile image
unknownguy1 in reply to Dollywow1999

Thanks I'll definitely look it up. Does anyone feel the sensations of spasms without pain and for how long? They can last quite a while

Milkfairy profile image
MilkfairyHeart Star in reply to unknownguy1

Have you seen a Cardiologist who understands microvascular and vasospastic angina?

It's not usually possible to diagnose microvascular or vasospastic angina from an ECG and CT angiogram.

These types of Ischaemia/ angina non obstructive coronary arteries are not well understood by many Cardiologists.

Microvascular angina can be confirmed by a Cardiac perfusion MRI, or during an invasive angiogram when how the blood flows through the small blood vessels can be assessed.

Vasospastic angina is diagnosed by an invasive angiogram using a chemical to see if it stimulates coronary vasospasms.

I also suggest you view with caution anybody who suggests that a build up of plaque can

be reserved.

If you have microvascular or vasospastic angina your coronary arteries are unblocked by plaque.

Statins are prescribed to patients with microvascular or vasospastic angina to improve the function of the inner lining of the blood vessels.

Some people feel pressure or thightness in their chest or breathlessness rather than chest pain during a coronary vasospasm.

Microvascular angina is thought to be caused by the inability of the small hlood vessels to dilate or stay dilated in response to extra demands like exercise.

Coronary vasospasms are transient constrictions of the coronary arteries or microvessels vessels.

unknownguy1 profile image
unknownguy1 in reply to Milkfairy

You seem very informed on these milkfairy. Chest pain is a rather loose term used but yes I do get pressure or tightness and the odd spell of breathlessness, although not very much. My cardiologist only left notes on my discharge forms and it's my understanding that I'll have a follow up in a few months. I just want a correct diagnosis so I can get treated

Milkfairy profile image
MilkfairyHeart Star in reply to unknownguy1

My story starts 11 years ago when I was admitted to hospital with a suspected heart. At the time I was incorrectly told I couldn't have angina or a heart.

I struggled to get my diagnosis at first. I did lots of research and found a Cardiologist who could help me.

I too wanted to know what was causing my symptoms so I could have the correct treatment.

I armed myself with knowledge.

Microvascular and vasospastic angina are sadly still poorly understood and recognised by many Cardiologists.

Maybe when you have your appointment, ask the Cardiologist if they are aware of this research study iCorMicA.

This study is about how best to diagnose microvascular and vasospastic angina.

clinicaltrials.gov/ct2/show...

unknownguy1 profile image
unknownguy1 in reply to Milkfairy

I'm glad you were able to finally able to get the correct treatment and thanks for your help

Milkfairy profile image
MilkfairyHeart Star in reply to Dollywow1999

Microvascular and vasospastic angina are types of angina/ ischaemia with out permanent blockages of the coronary arteries. No plaque build up.

Can you provide some evidence based research to support your view that plaque build up can be reversed?

Dollywow1999 profile image
Dollywow1999 in reply to Milkfairy

I thought all angina are a result of something else negative going on in the heart??and it's a Dr Brewer who lowered his plaques probably soft plaques with salmon every day and low dose 5 mg statin for inflamations sake but that woman's name I mentioned to u she even says when the body's natural defense of macrofages coming to clear away LDL that is small and dense type that is .....the macrofages can be damaged by a diet with omega 6 oils

Tos92 profile image
Tos92

Hi unknownguy1

I’m sorry to hear about your diagnosis.

As others have told you, it is a niche condition but the correct diagnosis is important in order to receive the right treatment.

I won’t add anymore as you’ve already been given good advice however, I too suffer from coronary artery spasms. I had a spasm which lasted long enough to trigger a heart attack last year!

I wish you all the best with any future appointments and treatments and always, we are here if you have any questions.

Best of luck.

Tos

Chocolatescorpi profile image
Chocolatescorpi

So ummm yeah...I think that the worst trigger- for me anyway, is the anxiety, so you need to get that under control as much as you can.

I've been living with Printmentals AKA unstable Agina AKA variant Angina AKA Coronary Artery Vaso Spams (CAVS) now since 2010 and have had 4 heart attacks- my first at 38 so I've battled through it and I'm almost 52.

And considering I had to battle for 4 years with these bloody ignorant, arrogant cardiologists here in Melbourne till I finally got an older German doctor who finally believed me...and that was a HUGE battle...

I'm a female that lives alone and CAVS usually comes about at night when resting-physical activity doesn't start it, but does exacerbate it.

And it's well known that CAVS strikes at night when at rest but they don't now why.

I do know though, that its stress/anxiety AND bacterial infections Such as any kind of abcess and the infected blood going through the body can trigger it. Also on the odd occasion Sudden freezing cold has too.

AND I have been hooked up to every machine known to mankind in the cardiology ward, having an IV infusion of GTN and not one of them detected that I was having a heart attack!

The doctors wouldn't believe me, the nurses wouldn't believe me so I was arguing with them all day- from 9.30am and eventually they gave me another blood test and then finally at 5.30pm the doctor came in and told me to stay in bed as my Troponan had risen to over 5500...So DON"T TRUST THE MACHINES.

TRUST YOU AND TRUST YOUR BODY!

I don't smoke anymore and am not really game enough too...infact I'm not game enough to touch any kind of substances anymore....and although I was a career bartender for decades, I don't drink anymore because if I drink spirits, I can literally feel my heart being squeezed, so if I do drink, its champers or low alcohol wine with lots of juice and ice.

Anyway, keep your bottle of GTN spray with you at all times.

I find when I use it, I have to stay absolutely still for it to work. I can't even move my eyeballs, otherwise it comes back again and again. But if I stay stock still, then eventually the pain- in my right side, goes away.

The thing I hate most is the side effects of the GTN spray, the sore throat, the massive loss of brain cells... Big headaches and feeling like a zombie...but I guess that better than another heart attack....And I can't stand the GTN patches- the headaches are just incredibly painful....

Listen to your body- except that mongrel little voice in the back of your head every night when you go to bed..., don't get infections, don't do anything before thinking about it and as mum always said, better off safe than sorry...AND DON"T listen to just one cardiologist, I had about 12 before I finally got one that decided I was right...(still hasn't helped much though...)

Infact the cardiologist that I trust the most and I will never be able to see him cause he's in the UK is DR Sanjay Gupta. Check out his YT channel. This guys is spot on. And I've done nearly 14years worth of research...

And checkout this post I wrote on the heart in 2020...peakd.com/worldheartday/@ch...

The older I get the more anxiety I'm suffering, plus I don't sleep well (ofcourse...) and I threw my useless cpap machine out the window so I'm going to try CBD treatment soon- for the anxiety and sleep...because we FINALLY have CBD clinics- well one atleast...finally Australia in coming into the 21st century...slowly...but still the most useless cardiologists....

The most important thing is to be an ative participant in your own healthcare, don't be a bystander and let others dictate to you. Do your own research and trust the Mayo Clinic, Trust the Cleveland clinic and Dr Sanjay Gupta and TRUST YOU!

And for all the girls out there- TRUST myheartsisters.org/about-wo... and best wishes to all of you.

Milkfairy profile image
MilkfairyHeart Star in reply to Chocolatescorpi

Hello,

I am sorry to hear that you have also had such a challenging patient journey.

I am badly affected by vasospastic angina the term now more commonly used to describe coronary vasospasms.

I have faced many difficulties too over the 11 years I have lived with vasospastic angina.

I have been in hospital 17 times.

Over the years I have seen a change in attitudes of the staff and a growing awareness of microvascular and vasospastic angina.

Have you had an angiogram with acetylcholine to confirm your diagnosis?

I had mine here in the UK in 2014.

I have a supportive Cardiologist with whom I co wrote my care plan to guide the staff how to care for me when I go into hospital.

I am usually admitted once or twice a year for over a week for treatment with IV GTN.

Australia has some world leading researchers and Cardiologists in Ischaemia/ angina non obstructive coronary arteries. INOCA and ANOCA the umbrella term now used to describe microvascular dysfunction and coronary vasospasms.

Prof John Beltrame in Adelaide also researches Myocardial Infarction non obstructive coronary arteries MINOCAs.

Perth hospital has just established a special service for INOCA patients.

I have met and spoken to Dr Sanjay Gupta and I am afraid I didn't find his information as up to date as it could have been.

I suggest you check with your GP or Cardiologist about using CBT oil. The carrier oils and the CBT could trigger coronary vasospasms.

You maybe interested in this website.

internationalheartspasmsall...

It was created and written by 4 patients with over 50 years combined experience of living with microvascular dysfunction and coronary vasospasms. They are supported by 30 world expert Cardiologists.

One founder is from Australia. The group is actively working with Cardiologists to improve the care of patients living with INOCA/ANOCA.

The group have been involved with WomenHeart in the US and the authors of the Lancet Women's and Cardiovascular Disease Commission Report.

youtu.be/ZGHuDfZRSY0

The BHF website has this information about vasospastic angina. An expert patient was involved in advising the BHF about the contents.

bhf.org.uk/informationsuppo....

Poppy451 profile image
Poppy451 in reply to Chocolatescorpi

Hi there

I found CBD oil brings on the chest pain.

Sunshinebrew profile image
Sunshinebrew

hello

I will add my experience of vasospasic angina which is similar to others as it is little known by many doctors and it took a few years for me to get the correct medication.

I also would describe the feeling of a spasm as a heavy squeeze and tightening around my upper back and chest which causes breathlessness and stops me doing anything. I find the symptoms can come on when I’m resting and I find cold and very hot weather, and stress and overdoing things mentally and physically can bring on an episode which leaves me exhausted then for a day or so after before feeling better.

I was diagnosed after having stents in my LAD and because I continued to suffer regular angina symptoms as described after the stents and numerous further angiograms and other tests to check my arteries which were clear and was told that the stents were fine and there were no other blockages so I ‘couldn’t’ still have angina.

However I persisted and after seeing a few different cardiologists none who were experts in microvascular and vasospastic angina and some who were more open minded than others eventually my medication was changed and I was taken off beta blockers and changed to calcium channel blockers and this made a big difference. At the time I was having symptoms 2 or 3 times a week with days in between of exhaustion and spent all my time either feeling ill or resting. It took a while but my symptoms have reduced significantly they are now manageable and although I still suffer occasional episodes of chest tightness I can have a normal life mostly and am able to exercise and also practice mindfulness and yoga to reduce stress and anxiety and make sure I keep warm in the winter etc

I haven’t had the test to diagnose vasospastic angina specifically but was diagnosed as microvascular angina being likely and now I’m on calcium channel blockers I am convinced myself that I have vasospastic angina because I think the beta blockers I was prescribed previously had made my condition worse.

All of my knowledge has been gained from this site and milkfairy helped a lot.

It is so difficult to get a diagnosis and the correct treatment for this condition and I wish you well.

unknownguy1 profile image
unknownguy1 in reply to Sunshinebrew

Thanks and glad to hear that you are able to carry on a normal life mostly. I do take propranolol for anxiety so whether this is making my spasms worse, not sure. The hospital were aware of my medication before they put me on nitrates so I guess I need to follow that up

momander profile image
momander

Hi unknownguy1,I know how scary this is and of how you now feel. I've had 3 heart attacks since 2021, 2 stents that collapsed, and now recovering from double bypass!! It changes your whole life forever, but it doesn't need to be the end!! Medicine is so advanced now, and alot of symptoms can easily be controlled by medication. What you've been given sounds pretty standard to me. I was on isosorbide mononitrate but it made me really poorly so I was taken off it. I'm glad its working for you. It will all take time for you to adjust mentally to this. It's a huge shock. Keeping well physically is a good start. Trying to eat the right things, definitely no smoking!! I stopped 2 years ago and I stopped drinking too. It's a mind set thing really, and my GP once said to me "remember, stress is your biggest enemy"!!! She was right! So trying to be calm helps. Not getting involved in drama helps too!! I wish you so much luck, peace, and hope. You will be fine!! Xx

unknownguy1 profile image
unknownguy1 in reply to momander

Thanks and sorry to hear you've been so poorly. I can relate about stress! And anxiety too which has increased a lot since my diagnosis. It's like every twinge or sensation sets me off again but I'm trying to be more relaxed

momander profile image
momander in reply to unknownguy1

You WILL get thete but it will take time!! A nurse told me that from now on I will be hyper aware of any sensation in my chest area !! She was right!! I'm a therapist by trade and am used to working with clients with stress and anxiety and health anxiety!! When it comes to myself though I'm unable to employ the same coping strategies because it's ME!! I try to focus o all the positives and not the what ifs, or the if only's. My life HAS changed and it will NEVER be the same again but I embrace my new life and give thanks every day that I am alive to enjoy it!! You WILL get through all of this, I promise you. Take care. Xx

Jongemini profile image
Jongemini

Hello. Firstly, don’t worry. Things do get better. I was diagnosed with exactly the same thing 2 years ago after regularly having excruciating chest pain that required a GTN spray to relieve. I as put on the same medication as you. In my case the arterial spasms were believed to have been caused by excessive calcium levels in my body. A CT scan showed a calcium score of 260 which was considered very high. The consultant told me that calcium was required by the heart to constrict and expand and he reasoned that too much calcium could cause similar constrictions of the heart arteries. He put me on a calcium channel blocker ( Diltiazem hydrochloride - brand name Zemtard, administered once every night as a 180mg gradual release tablet). The spasms stopped. I haven’t had a spasm for over 12 months even though I still carry a GTN spray with me. I have also cut down very much on my calcium intake - definitely no cream, less butter and cheese. You might want to have your calcium score checked and talk to your doctor about the calcium channel blocker approach also.

But as I started saying, don’t fret too much as things will improve.

unknownguy1 profile image
unknownguy1 in reply to Jongemini

Thanks. Glad to hear you're feeling much better now. Must be a relief. My calcium score wasn't mentioned after my CT so not sure. They don't seem to know what has caused my spasms

Arty56 profile image
Arty56

Hi, it's very early days for you, it's alot at first and you are very worried about everything. Over time it will get easier, you need to come to terms with it and not so afraid, it will happen over time, once your meds are sorted and you get used to how it feels and how your body reacts to its new normal, you will be able to take it more in your stride. Key points though are get your meds sorted out. Good luck x

unknownguy1 profile image
unknownguy1 in reply to Arty56

Thanks. It's because everything is new that I my anxiety has went through the roof but I know I'm not alone since finding this forum. I know it will take time to find the right medication that works but it's frustrating

Hi @unknownguy1,

Just a reminder that content on HealthUnlocked does not replace the relationship between you and your doctor. Please avoid making any changes to your medication or advising others to do the same, without speaking to a health professional first.

Many thanks

Poppy451 profile image
Poppy451

Hi there

It can be really debilitating and unpredictable. I was feeling so good for weeks with hardly any angina - I thought I was cured . Then boom - angina attacks in the middle of the night and I feel like a bomb has gone off in my chest again. And for days now the chest pain has not lifted. I cant tell how long this episode will last and dread to think I may not feel well again for weeks. I can sympathize with you feeling anxious about it , it takes some grace and self compassion and patience when you are going through it. I am not good at staying still when there are things to do but then I dont get better quickly.

take care

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