The mysteries of coronary artery spasm - British Heart Fou...

British Heart Foundation

49,232 members31,169 posts

The mysteries of coronary artery spasm

LoveItaly profile image
17 Replies

Hi! Another newbie here!

I had a CAS in 2013 and now five years later, although there has been no reoccurrence, I am mystified by the lack of research into this condition mainly it's causes and prevention. I have recently declined to attend my local CAD clinic because I simply do not have diseased arteries!

I would be interested to hear from anyone who can link me to any research in the UK or abroad that would enlighten me.

I suffer occasionally from anxiety and worry that this caused my CAS initially.

Lovely to meet you!

Written by
LoveItaly profile image
LoveItaly
To view profiles and participate in discussions please or .
17 Replies
LoveItaly profile image
LoveItaly

Thankyou for your reply. I have read the link you quoted and must confess to being lost in places - it seems to be a professional page. I already know that CAS can be caused by smoking ( I never have), cocaine ( definitely never have!), extreme cold (it wasn't at the time), withdrawal from alcohol (also not applicable) and stress - the most likely culprit.

I see my GP regularly for other conditions and I still have the blood tests for heart function. I just don't see the point of being checked for artery disease when the cardiologist carrying out my angiogram said (and I quote) "your arteries are pristine my dear."

I take aspirin and statins as prescribed without question.

Keedle profile image
Keedle in reply to LoveItaly

im similar. 3 weeks ago i had a metallic taste in miuth and left arm ache, but not bad. Gp sent me to hospital for ecg and blood tests. Raised troponin levels so they said i had a heart attack. Was in hospital a week, my heart had a spasm during angiogram. No blockages and was sent home with a bag of meds. No explanation why. I mentioned CAS to rehab nurse and she said yes it could be! So i asked if i need calcium blockers and was told maybe! Just told gp today i keep getting left shoulder ache which gets a bit better, i think, with spray and he told me to double bisoprolol. My bp is 114/70. Pulse 60. In hospital they gave me that amount and I nearly fell over as bp was so low. Ive told him that i wont double it. I asked to see a cardiologist agsin and wax told 12 month waiting list! I really want to pay for a cardiologist that specialises in CAS. None in Devon i dont think. Anyone know someone in Bristol area. Im so fed up not knowing

Milkfairy profile image
MilkfairyHeart Star in reply to Keedle

Hello,

I am sorry to read of your experience.

I acknowledge just how difficult it can be living with such uncertainty about the cause of your symptoms.

I had to struggle to get my diagnosis.

I have lived with Vasospastic angina, the term now more commonly used to describe coronary vasospasms, for over 10 years.

Has anybody suggested you may have had a Myocardial Infarction non obstructive coronary arteries MINOCA?

If you have had this type of heart attack, I suggest you contact the Patient Advisory Liaison Service PALS of the hospital concerned and ask for a follow-up appointment sooner.

Coronary vasospasms or microvascular angina are both types of Ischaemia non obstructive coronary arteries INOCA, and can lead to a MINOCA.

Unfortunately these conditions are poorly understood by many Cardiologists and Cardiac nurses. Though there is alot of research going on into this area of Cardiology.

The BHF has this information about vasospastic angina.

bhf.org.uk/informationsuppo....

The forum guidelines ask as not to name individual doctors on the open forum.

If you are on Facebook there is a very good support group which is mentioned in the BHF information. I suggest you join the group for further support.

m.facebook.com/groups/62675...

Another useful resource is this website.

internationalheartspasmsall...

LoveItaly profile image
LoveItaly

Because on the day of my CAS I suffered extreme stress in my work, around four factors coming into play both expected and unexpected. Management later apologised profusely for heaping responsibilities on me far beyond my abilities.

And by a process of elimination, none of the other hereto known causes applied to me.

kel55 profile image
kel55 in reply to LoveItaly

hi, heres a list of what to search on the net, iether direct or side related. there is also a few facebook groups.

Professor Juan Carlos Kaski

Professor Peter Collins

Coronary Syndrome X

Small Vessel Disease

Microvascular Disease

Microvascular Dysfunction

Vasospastic angina

Prinzemetal

vascular spasms

LoveItaly profile image
LoveItaly in reply to kel55

I will certainly look these subjects up - many thanks!

Milkfairy profile image
MilkfairyHeart Star in reply to LoveItaly

Cardiac syndtome X is an outdated term for Microvascular angina.

Prof Peter Collins has now adopted The term Microvascular angina .

MVA is a discreet condition from Coronary artery spasms aka Prinzmetal Angina or Variant/ vasospastic angina though some individuals like me live with both.

rbht.nhs.uk/patients/condit...

The latest research into MVA and or Coronary Microvascular dysfunction is being carried out by the following BHF funded researchers

Prof Colin Berry

Prof Divaka Perera

bhf.org.uk/informationsuppo...

bhf.org.uk/informationsuppo...

bhf.org.uk/research-project...

Prof Juan Carlos Kaski has now retired from his NHS practice.

kel55 profile image
kel55 in reply to Milkfairy

your correct of cause milkfairy but not all of the internet as caught up, thankfully the BHF are STARTING to get their act together but there are others out there that have been researching these things for a while. Kaski still as you tube clips and his latest published work was last year

there was a research paper on prinzemetal released only last year and the NIH GARD org up dated their bumf on prinzemetal only 2 weeks ago and we know the latest name for it is.......vasospasms and those who use this term talk about vasospastic angina? personally I think CAS is far superior

Milkfairy profile image
MilkfairyHeart Star in reply to kel55

I agree I prefer the term Coronary artery spasms and that is my diagnosis along with MVA as my small vessels spasm too so vasospastic angina perhaps a better term?

Whatever it is called it's painful! I am awake as usual in pain in the early hours.

You maybe interested in the link below

clinicaltrials.gov/ct2/show...

The BHF have started to move because of a patient over the last 2 years kept asking for the change they were involved with Prof Colin Berry in advising on the contents of the updated MVA leaflet.

Do have a read much better than the former CSX leaflet. They have also updated the information on the website describing MVA and CAS as other causes of angina.

All the printed booklets found in many hospital dept have also been updated too.

This all took time about 6 months in all.

kel55 profile image
kel55 in reply to Milkfairy

dont get me wrong here because any research is better than none but didnt collins do this back in 2002 but using an MRI Scan?

Yes l have read through them and yes they are vastly improved publications and about time too.

I am having trouble getting disability and l put it down to two things, firstly my GP is a sit on the fence type, too frightened of being sued so too frieghtened to stand up and be counted and the BHF stance of 4, 5 6 years ago. the DWP still refer back to those days so please forgive me for not being there friend. I assume that head poncho has gone because she was adament that things on her watch wouldnt change!

Milkfairy profile image
MilkfairyHeart Star in reply to kel55

I am sorry Kel like so many of us with this condition that you are having a challenge to access the care you need.

I was awarded a PIP the process was one of the most stressful things I have gone through nearly landed up in hospital.

Minds can be changed through persistence and the presentation of the appropriate research in a persuaive way.

blog.bhf.org.uk/not-my-prob...

I hope you are able to use the updated information about MVA provide by the BHF to help to educate all the Healthcare professionals you encounter.

MRI scan are constantly being improved mainly through the of use of very sophisticated algorithms and new computer systems to interpret MRI scans

sciencedirect.com/science/a...

kel55 profile image
kel55 in reply to Milkfairy

Sorry for butting in on your post loveitaly but its all good stuff coming out.

Because of not getting pip again l am going to have to change cardioloists because l cannot keep affording the lodgings and train fare to london. Yes there is a direct link .

who is your Cardiologist and have the BHF a list of Cardiologists that have a working knowledge of our disease. So far inthe west midlands area l havent found any

Milkfairy profile image
MilkfairyHeart Star in reply to kel55

Hi Kel,

I used the guidance from this site

benefitsandwork.co.uk/perso...

Citizen's advice is also another route.

It is all in the wording.

It is important to seek out a supportive Cardiologist and I still have issues each time I go into hospital. I am collecting written sincere apologies from various Cardiologists at the leading London hospital I attend every time they fail to read my Admission Plan or tests results and try and reinvent the wheel and start trying to change my drugs etc.

It is hard work but it is a way of raising awareness of my condition .

I do also always write and thank the staff when they get it right which they do most of the time.

kel55 profile image
kel55 in reply to Milkfairy

yes l alread have followed these things but still no joy. My GP will not do a care plan or anything off is own bat, he will only do what a cardiologist tells him. Heres a prime example of what hes like: pip asked him to list my diagnosises and he left off most of them? so l questioned him about hypertension he said do the pills you take stop the hypertension I said yes so he said therefore you havent got hypertension! so if l leave the pills off l will have hypertension again. he shrugged his shoulders

l have looked to move but nobody else will have me?

In the last week my wife as said never mind sue him for doing something wrong we should sue him for not doing anything!

Like you if there was low mid highscale then l would be towards the top of the highscale

Milkfairy profile image
MilkfairyHeart Star in reply to kel55

I am inwardly screaming with you😖

LoveItaly profile image
LoveItaly in reply to Milkfairy

ThankYou!

kel55 profile image
kel55 in reply to LoveItaly

sorry for this side loaded discussion loveitaly but this lack of health profesional suport has been going on for years, at least 7 that l know of!

You may also like...

Coronary artery spasm

I've been recently diagnosed with coronary artery spasm and already read a few posts on here about...

Coronary artery spasms

and tests they think I have been having coronary artery spasms .Anyone else get this and how do you...

Coronary Artery Spasm - return.

Nearly two years ago I was diagnosed with Corornary Artery Spasms (Vasospastic Angina) and have...

Coronary artery spasm

change in hospitals they decided I had coronary artery spasm and sent me home with Amlodipine with...

coronary artery spasm

have been told that I most probably have coronary artery spasm as get chest pain if I rush...