Can I ask Milk Fairy and Tos especially (and of course any others) their understanding of the significance of the timing and length of the spasm? Most of what I read says things like most usually between 00.00 - 08.00 for example with episodes of up to 15 mins maybe 30 mins? But I notice on the relevant FB pages of the VAS (CAS) support group that people emphasis spasms at all times of the day with some lasting hours and hours. I fully appreciate that the only certain way of having confirmation of the disease is via a provocative coronary angiogram.
Vasospastic Spasm (Coronary Artery Sp... - British Heart Fou...
Vasospastic Spasm (Coronary Artery Spasm)
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Robfromwales
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Hi Rob,
Vasospastic angina is typically experienced between the hours you mention which are 12am to about 6am. Although my worst spasms seem to be in the night, which can last hours as they come on intermittently throughout the night (I also refer to these as clusters). The longest I have experienced a cluster of spasms has been somewhere around 8 hours.
The occurrence of them during the day is also not uncommon as during unstable episodes, I can easily have somewhere between 3 spasms during the day. The ones during the day can last from anywhere between a couple of minutes to about an hour for myself. I respond to my GTN spray when my spasms are less severe and shorter in durations. I do not respond to my GTN spray effectively when my spasms come in clusters and last longer in duration.
Although vasospastic angina is more common upon rest, when I experience them during the day, there are noticeable triggers which may answer your question. My triggers in the day could be stress, the weather, exertion, or tiredness due to a lack of sleep. Consumption of certain foods during the day and exposure to certain smells can also trigger my spasms.
After a really severe or bad spasm, it usually takes me an entire day and night to recover due to the fatigue that comes with it.
I hope that gives you a bit of an insight. Each person is different therefore, someone else with the same condition may not necessarily experience spasms the way I do and symptomatic control is also key which can determine the severity and length of spasms.
I hope others will be by to share their experiences with you too.
Tos
Thanks TOS. So when in spasm do you have classic angina symptoms eg pressure, tightness, construction , shortness of breath? And by your description are the spasms so obvious when they start and when they end? What I often get ( am being investigated further for eospegal supposed issues) is sharp electrical pulse like pains which are very noticeable but not hugely painful and no other symptoms. I think gp Dr thinks these are not spasms but I am not so sure .
Yes, I experience angina/chest pain with most of my spasms. They can range in severity in terms of the pain. My spasms usually feel like a squeeze or contractions in my chest. Apart from this, I also experience a sharp stabbing pain mainly under my left breast, a deep pressure in chest, throat and ears, and shortness of breath with severe spasms.
I can usually tell when they start, however, sometimes it can be difficult to determine when they end as my chest can be sore for hours after.
I have/am also being treated for suspected oesophageal spasms. These too are very noticeable for myself. Again, it feels like a squeezing pain which radiates from my chest to my throat and into my ears. It often feels like a deep pressure inside my throat and ears. It’s a very unpleasant and painful sensation.
A manometry is considered as one of the main tests to rule out/in oesophageal spasms. Which tests are you due to have?
Tos - manometry and ph test but on NHS and could be a long while. At least (as I have said before) the pain/discomfort took me ( I admitted myself) to a and e and eventually led to CT scans etc that discovered a 5.2 thoraic ascending aorta now thankfully repaired by graft after OHS. I also have a biscpid aortic valve and mild desposits of plaque by low calcium score (less than 10).
Have they given you anything to treat the suspected oesophageal spasms for the time being? I know how painful they can be. GTN can also help with oesophageal spasms. Perhaps discuss this treatment option with your GP if you feel that the wait for your tests will be long.
thanks Tos - yes i have gtn but only felt need to use it once. why i am not convinced its oesophageal are things like to 'electrical' type pulse pains. i have also had a syncope ( a and e said vasa vagal) plus a 12 day run of afib and i think its too co incidental that these occured over these last 3 years since having these symptoms. and as i say i had ohs for a thoraic aneurysm thrown in during this time.
Keeping a diary of your chest pain and any triggers would be a good start.
As far as I’m aware, vasovagal syncope is not associated with chest pain. If fainting is accompanied with chest pain, then other investigations into possible heart related issues need to be carried out.
Vasospasms are very hard to catch. I always have this issue when I present at A&E because by the time the ambulance arrives or I have managed to get there myself, the spasm has resolved and therefore, my ECGs appear normal.
If you are having coronary artery spasms, then your current treatment plan may give you some relief from them. Often, medications with vasospastic angina need adjusting a few times before the right combination is found for patients.
As you have not had the functional angiogram, it maybe worthwhile mentioning this to your cardiologist.
Functional angiograms are not widely available at the moment in the UK. I was very fortunate to have my angiogram with acetylcholine in 2014.
Have you had a functional angiogram?
A vasovagal syncope can be caused by severe pain. I have experienced several episodes over the many years of living with vasospastic angina as well as experiencing heart arrthymias which were picked up whilst I was on a cardiac monitor in hospital.
Atrial fibrillation can occur following heart surgery.
As well as causing fainting AF can lead to chest pain too.
My mother in law's AF lead her to have a heart attack due to a supply demand mismatch. Her heart couldn't supply enough blood to her heart muscle because of her arrthymia.
Not all angina without obstructed coronary arteries is caused by microvascular or vasospastic angina.
They haven’t been widely available for some time. Is access to this test improving however? - Yes. This is reflective in the slow and steady increase of patients who are being diagnosed with INOCA/ANOCA conditions which we are seeing a growing community of on forums such as this, and those joining patient support forums on other platforms.
You may find this 20 week video series on INOCA/ANOCA conditions interesting. This non-profit organisation was set up by an expert patient and is supported by over 30 specialists in the field which appear on the video series’. They are also one of a few non-profit organisations which have had an important contribution in raising awareness of these conditions which saw them being recognised and receiving an award for their video campaign by The World Heart Federation in 2023.
inocainternational.com/vide...
Raising awareness has led to patients self-advocating and being able to obtain a correct diagnosis by getting access to the right tests. Although access to the right treatment for these conditions is still a challenge, it does not seem to feel as impossible as it once did. Hence, the increase in diagnoses, albeit slow.
I believe you are already aware that the functional angiogram has not been deemed necessary in my case by a specialist due to previously having had a MINOCA from a coronary artery spasm. You have commented on my posts before. See below.
healthunlocked.com/bhf/post...
If this test ever needs to be performed, I have access to it as fortunately, my cardiologist is a leading international specialist.
I am sorry to hear that you have experienced vasovagal syncope with your vasospastic angina.
As an 'old head' my views are formed from an actual lived experience of the changes.
There are fortunately more and more groups all over the world who are actively working towards raising awareness of these conditions and working in equal partnership with researchers.
There have been individuals queitly working behind the scences to raise the profile of microvascular and vasospastic before any forums or support groups were even established. They perhaps are the unsung heroes.
The information on the BHF website about microvascular and vasospastic angina was produced with input from an expert patient who has co authored several academic papers, is a co applicant to research studies and has spoken at professional conferences.
This individual was instrumental in ensuring that microvascular dysfunction and coronary vasospasms are now included in training curriculum of UK Cardiologists.
There is an expert patient involved with various professional organisations working towards improving the care of patients living with microvascular and vasospastic angina.
Another expert patient was involved in producing the latest European Society of Cardiology's Management of Acute Coronary Syndromes guidelines which included for the first time the patient perspective.
It is a team effort.
Thanks for the info , that's really good to know
Hi But the increased number of people you mentioned - have they actually had a provocative angio with acetylcholine? They don’t seem to mention having had this test - except Milkfairy . Apologies to anyone who has had the test too.
This test has been mentioned for me by two cardiologists but as an “elimination” test although I remember it needed some kind of approval by a board at least in my trust before it could be approved for use. So not technically readily available but just my view. I’ve not pushed for it I don’t fit the profile I feel.
That is NHS although, May be wrong but I believe your cardiologist is private? It may be more accessible privately - most things are if your willing to pay.
I am of the view too( especially from my own experience) there is a trend to default to a diagnosis of microvascular / spasms without actual tests in the absence of of obstructions.
Just my view.
Hi Fanfab,
I work closely with a non-profit organisation in these conditions and yes, there has been a slow and steady increase in the number of patients being offered the functional angiogram with acetylcholine. You are perhaps not seeing this change as there are many patients with these conditions that are not on the platform of Health Unlocked. I, myself, have been slightly surprised and have noticed this change more so from this year, 2024.
Unlike yourself, as you have mentioned you don’t feel you need it therefore, have not pushed for it, many patients exhibiting INOCA/ANOCA symptoms are now more confident in approaching/pushing their physicians and asking for it as a result of patient support forums and other organisations. This is because they are desperate to get some quality of life back which has also seen a slow increase in the number of patients willing to travel to see a specialist in the U.K. as well.
However, patients often seem to be more successful with obtaining these tests quicker when they are either being treated by a specialist in these conditions, or a cardiologist that has some knowledge or experience in these conditions which is where organisations and other support forums come in to encourage/support/direct the patient further.
As these communities are growing, so are the number of people being diagnosed with these conditions which is having an influence on, and increasing the number of medics who want to learn more about these conditions as well. This is reflective in the yearly meetings which the organisation I work with has, gathering INOCA specialists from around the world and expert patients, which has successfully grabbed the attention of a growing number of medics outside of INOCA who are eager to learn more.
This is a positive as it allows more hospitals hopefully to get approval to carry out the correct specialised testing with the appropriate training, or at the very least informs them on these conditions so that they can refer or arrange for tests for their patients if they cannot complete them at their hospital due to not having the appropriate equipment or resources for example.
My official diagnoses’ were made via a private cardiologist but that is because I was no longer willing to wait as I was very symptomatic. My future care for my VSA and MVA will be through a different specialist on the NHS. Therefore, if I ever required specialised testing or tests, a cost will not be involved. Having gone through the process of private to NHS myself now for INOCA conditions, the transition is not as difficult as what patients may fear it is. Therefore, this is a route that patients with these conditions are now willing to explore which places them one step closer in accessing the right tests.
I agree that patients have been diagnosed with VSA and MVA without the functional angiogram however, at the same time, it is important to recognise that change is happening in accessing these tests for these conditions. Because these are slow changes, as I’ve mentioned a few times, it is not becoming apparent or obvious yet.
These are my personal observations from working with patients and organisations in these conditions outside of this platform. It would be too early on in the year to establish data around the accessibility factor for specialised testing for INOCA/ANOCA conditions however, the trend in the number of patients having access to specialised testing is seemingly improving, producing a slow, yet positive upward trend. One which I hope will continue to increase as this gives many people suffering with these conditions hope that there is a way out.
thank you milk fairy and tos. Milk fairy - I notice your spasms don’t seem to last a very long time although some of those pain scores and especially if like labour must be horrendous
Some of my vasospasms will last up to an hour in length. A contraction during labour lasts about a 60 to 90 seconds, especially towards the first stage of labour.
During my angiogram with acetylcholine my coronary arteries were seen to almost completely closed.
The more ischaemia the more dynamic ECGs are seen.
I have had ST elevations which scared the hell out of the medical staff.
Thanks Milk Fairy. Is that towards the upper end in your experience (?) although I think Tos said 8 hrs on one occasion. My particular point in asking (appreciating as you have said that everyone's exoerience is different) is that the standard advice from reputable sources suggests that hey last upto 15 mins?
Hi Robfromwales,
I have suspected spasm. Cold is the worst and most common trigger. The colder the weather, the worse my attacks. Stress is another trigger.
I wondered if anyone knows if air pressure/quality affects this condition?
My sudden attacks are relieved within 5mins of taking GTN but left with aching chest afterwards. Severe attacks can make me very short of breath feeling like I'm running out of oxygen - again, GTN reverses this feeling. I have had days when the aching chest goes on for hours.
The discomfort in my chest feels like an intense pressure which builds - like something being blown up in your chest, and a squeezing sensation.
I can sometimes wake on a morning with a dull pain in my chest and at times sweating.
I experience my attacks any time. They occur at both at rest and on exertion.
I don't really suffer much from sharp pains - more dull and aching, when it's really bad just generally feel unwell, weakness in my arms and ache in my left shoulder.
I have had some strange sensations in recent weeks and I don't know if anyone knows what I'm talking about but it feels like mild sizzle type pain in my chest? I don't know if that's the correct description. Just kept coming and going.
I would say last month I had on average three a day because I was using my GTN three times a day for relief. Typically on a morning, early evening and late at night/bedtime/early hours.
again so interesting as once i had the feeling of something being blown up in my left hand side chest but thankfully not had that feeling since. do you get that feeling most times? when you say sizzle - i used to get (but not so often now) a burst of what i would call 'electrical' like pulses often across the top of my chest. i would say between 5-7 in say 5 -10 mins.
You asked a very important question. 'I wondered if anyone knows if air pressure/quality affects this condition?'
My husband thinks I am a human barometer.
My admission to hospital last November was due to the sudden drop in air pressure following storm Ciarán.
I have had a really tough winter because of the frequent storms and rain. I was back in hospital in February.
I will experience more angina when going up in high altitudes and I have to use oxygen when I fly.
My Cardiologist has recommended I only fly short haul.
I experienced a definite increase in symptoms during the high winds we had last week. I find misty days are a problem. Yesterday the weather was mild and settled and I noticed a distinct improvement - so much more energy and didn't require GTN. I dread next winter! I know one or two contributors to this forum have mentioned very high temperatures can bring symptoms on.
MilkfairyHeart Star
Which reputable resources do you mean?The amount of pain a person feels doesn't always correlate to the amount of myocardial ischaemia taking place.
That can only be assessed by a 12 lead ECG and troponin blood levels usually accompanied by the symptoms of angina.
Some people experience no symptoms when having a heart attack, a silent heart attack.
read it a couple of times - just looked up national library of medicine but i have read it certainly. but i dont think thats the lived experience of most people.
You're right the lived experience of most people doesn't necessarily reflect what is written in academic papers.
You might find these links of interest. An expert patient of experience contributed to both of them.
openheart.bmj.com/content/1...
journals.sagepub.com/doi/10...
This website was created by four people with over 60 years combined experience of living with microvascular or vasospastic angina supported by 30 world expert Cardiologists.
I would agree that lived experience is sometimes different to what you read in so much as my type of angina is experienced on exertion and at rest and yet everything I have read says it's mainly experienced at rest. It's very confusing.
thanks as always. i oscillate between reading stuff that seems very much like i experience in terms of gerd and eosphagitus (which I have) but its certainly not typical eosophagal issues like others seem to get (hence further tests). as i am on ccb ( inifidipine) plus have GTN for potential eosophagael issues I presume I am on the medication that I would be on if I did have a vasospastic diagnosis. thoughts on that?
Also milk fairy - do you know many people who have this diagnosis and then it goes as again i am sure i have read that while its often lifelong its not always the case.
MilkfairyHeart Star
The treatment for both oesophageal spasms and coronary vasospasms is GTN and calcium channel blockers.
Some people with vasospastic angina have one episode only, some go into remission.
Others after a period of remission start having symptoms again.
Some continue to have symptoms despite treatment.
Then an unfortunate few become progressively worse.
so the treatment is effectively the same for oesophageal spasms as vasospasptic as they are hollow vessels (as you advised) . although i note nifidipine doesnt seem to be as front line in Vaso as it is in oesophagael. given the similarities between vaso and oeso - are you aware of any concrete differention through your almost expert practioners knowlege
Nifidipine is also a calcium channel blocker. I was originally prescribed nifidipine as I also have Raynauds Phenomenon.
The newer generation of calcium channel blockers such as Diltiazem are now prescribed for coronary vasospasms as well as oesophageal spasms.
There is unfortunately still very little research exclusively investigating which are the best treatment options for people living with vasospastic angina.
The focus is towards microvascular dysfunction.
Why is that given so many people suffering with angina are non obstructive ? Mind while I don’t have a diagnosis I have been to virtually tens of health professionals over my three years in different health care settings and only one, yes one, ( youngish a and e consultant) have mentioned the possibility. Also anxiety been mentioned and I think milk fairy it’s your words I quote bsck ‘my symptoms and the lack of a diagnosis causes anxiety not the other way around’. If these aren’t yours I am sorry
I had never heard of angina with non obstructed arteries before. I assumed angina meant narrowed or blocked arteries.
I meant non obstructed sorry
From what I understand, I think it has always been there but under-diagnosed and due to improvements in technology and greater awareness amongst health professionals, the condition is now being increasingly recognised.
MilkfairyHeart Star
It's not great, I agree.As a group of patients we have to be persistent. Sadly too few healthcare professionals understand microvascular and vasospastic angina.
I have, thankfully over the years seen a gradual change.
During my last admission, the A&E Consultant who came to see me several times with a a wry smile said.
' I noticed that it's written in your care plan that your expertise by experience as a patient is to be acknowledged '
My response, ' well I wrote that part of my careplan and my Cardiologist agreed!'
Yes most prevalent in wee hours - mine would generally be between 2 and 7am, however I have experienced many in various daylight hours for varying time durations for years. Thankfully the frequency of my spasms has markedly decreased as have my sister's. We are all so different with presenting symptoms, time durations and severity, making this condition so frustrating to classify. Yes Milkfairy may have a more detailed and cultured response than I. I am 80 now and thankfully have improved over the last decade. Kind regards
this is a really interesting thread. Thankyou.
Does anyone know, is it common for VA to be a follow on from other conditions?
I had an HA a year ago and have 3 stents. And now increasingly thinking I have developed VA.
Chest pains, sometimes lasting hours, but sporadic. Something most days, but not all. Sometimes at rest. Actually seem to be less common during exercise. Morning a little worse than evening, cold making it worse.
I have a stress ECG booked in a couple of weeks, but very uncertain that it will catch anything as excercise is not a predictable trigger.
It is increasingly recognised that vasospastic angina can be a possible cause of ongoing chest pain after stents being inserted even after a coronary bypass.
Here's some further information you may find helpful.
This has been my experience I have 3 stents in LAD and continue to get chest pain/tightness with breathlessness I was given an assumed diagnosis of MVA but have not had the specific test I had been well for a few years with only occasional symptoms however since February I have had varying chest pain with breathlessness fatigue and have had a couple of near fainting episodes so I am waiting to see a cardiologist and managing my symptoms with the option of going A & E if necessary!
I have over the past 7 years seen more awareness in MVA and vasospasm but often I am more aware of these conditions than the doctors and nurses I see.
I am not sure if my symptoms are due to further blockages or to vasospasm getting worse and I suspect the cardiologist when I see him will not be able to tell me either without further tests
Fir now I am keeping a diary of symptoms and taking my medications with the option of A & E if I feel it is necessary however I will say that usually I am sent home after being sat in a chair for hours once they have ruled out a heart attack !!!
The most help and advice I have gained has been from this forum over the years
Thanks for the reply. Yeah, I was very nearly at the point of going A&E last night. Two rounds of GTN spray helped in the end. Really high pain level, profuse sweating. Very similar to HA. It’s always an option.
Like you, I am keeping a journal since I saw the cardiologist a couple of weeks ago. Not a day goes past without some level of symptoms but still not been able to establish a trigger or pattern of any sort.
Hello Rob, I had a MINOCA heart attack 3 years ago, and ever since I have experienced spasms/chest pain regularly. Mine can be any time, but I noticed that I get them mid morning and evening. The pain can drop me to my knees. Sometimes gtn spray works, other times it doesn't.I'm seeing a cardiologist Dr Thomas Keeble at Southend hospital in 2 weeks, and I'm hoping he can help me control/manage the pain. He specialises in the type of heart attack I had - I've been pushing to see him, and it took some doing, but I was so desperate for help, I persevered.
My pain varies from a cramp pain in my chest, when I cannot even talk, to a sharper pain smack in the centre and back of my chest.
I had chest pains on and off for years - I was told it was my oesophagus??? Who knows ?
We are all different, but one thing I have learned the hard way these past 3 years, is that MINOCA and chest spasms are not understood by a lot of doctors. I had to do my own research. Milkfairy on this forum has been very helpful to me.
Good luck for the future. X
thanks for taking the trouble to respond
Hi Robfromwales
I have MVA and I find it has a mind of its own sometimes. I do all the right things plenty of rest , sleep , avoid triggers etc.. Yet I can wake up one morning and it's like I have a beast knawing at my chest . Sometimes when I get into a funk it can last for days. The pain varies from crushing pain , preassure ,squeezing life out of me , sharp stabbing pain. Anytime throughout the day or night. Then I just have to lie low and not do very much at all and hope it passes soon. Today was one of those days . Not feeling good. Its best not to drink alchohol when I am taking gtn . Last week I was at my parents for lunch and had to use my spray then I had a strong gin and tonic that went to my head. My face as red as a tomato. Its hard managing the chest pains . I get quite fed up with it . Having to cancel plans etc..
Your experience is almost a carbon copy of mine. There's times when the pain can be really severe and debilitating, even when I'm doing nothing strenuous or triggering. It can happen when I'm watching the television o'r when I'm sleeping.
Yes very annoying , you don't really know how you are going to feel one day to the next.
Definitely. It took four years after having stents to get an official diagnosis. At times it felt like the cardiologist thought I was making the amount of episodes of pain up. To be fair he did sort of apologies after it turned out to be microvascular angina. He did say that that it was a condition that needed much more research and at present it's a post code lottery when it comes to diagnostic testing. Not the best news for people like us.
Good days/ bad days makes planning anything difficult. I agree with you. I sometimes feel I don't know where I'm at with this condition. It's difficult to fathom what is going on. I find going from warm to cold air always triggers an episode (Leaving the warmth of the house and then going out into the cold air).I experience an immediate tightening in my chest and intense pressure which builds.
Yes it makes planning really difficult. Right now I am taking driving lessons ( at 47) but I never know how I am going to feel on the day . Often I will have chest pain and not feel like driving fast at all. But having paid for the lesson cannot cancel without 24 hours notice.I dont notice much of an issue with hot cold . I know I can't go in the sauna/ steam or I will feel very unwell. I know coffee really triggers me so I don't drink that at all and avoid alcohol when I am not well . Other than that I just have to rest as much as possible but sometimes that doesn't work either.
Hi Poppy451,
I know what you mean about not knowing what you will feel like on the day. It's frustrating. I couldn't go to a theatre show last which I had planned for a while because it was just too cold on the day and I knew that I would end up with a more severe attack if I left the house. I had chest discomfort in the house caused by the weather outside so I wasn't going to chance venturing out. Didn't want to end up in A&E!
It's a shame to miss out on life but you would not enjoy it anyway if you have the pain . In fact doing anything can become quite torturous with angina and like you say maybe end up in A&E not fun . And then I feel bad letting people down . It's impossible to make plans ,just have to make the most of the good days.
Hi ,my spasms can occur at any time of the day or night . Most of my chest pain occurs at rest , but I noticed lately with walking I can also have it . Sometimes it feels like a spasm or cramp , other times a tightness or pressure . I can have difficulty breathing or not . I also get tightness in my throat and arm and jaw pain . Abdominal pain , mostly upper and severe back pain between my shoulder bladdes . Nitro spray is my only med and it doesn't always help . My spasms can last minutes or hours sometimes . My EKG has always been normal and my troponins on all er visits also normal !!! That's why it is so difficult to make the er doctors believe my discomfort and my feeling "unwell " or presyncope . It is very challenging not knowing when the next attack will hit !! I could be ok now and have spasms in 10 minutes . The usual triggers like cold , heat , stress ,high humidity , etc are evident , but others are not . I can only describe my "unwell " feeling as dying and then coming back to life - sometimes after many hours . Only 1 cardiologist agreed with my description . My challenge is also in not tolerating calcium channel blockers or nitro patches !! We are all so different ,but also so alike . Good luck !! It seems that the resources in G.B .are superior to mine in Canada . Again lots of luck . This forum has given me support and ...hope .
Hi. My spasms and those of my family strike at any time, day or night. My longest was 50 mins though.
how would you describe the symptoms Jacey15?
It's start with mild central chest pain which gets worse over a few minutes until it is very painful and radiates up to my jaw. I told a Dr once that it was so painful I wouldn't have been surprised if an alien burst out of my chest John Hurt style! I've passed out before. I also had a pulse oximeter which showed my heart rate and oxygen levels dropping severely during an episode (had to go to A&E). I'm fortunate that after some trial and error with medication, I've not had an episode in a year 😊
glad to hear its better. what meds are you on.? if i have vaso attacks - they thankfully arent like that.
I'm on lercanidipine (a CCB), isosorbide mononitrate, and nicorandil.
My worst episodes have nausea and sweating and additional symptoms. What are your symptoms?
Sternum pain only
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