I have had this wretched condition for a little over a year now. I really appreciate this forum and have spent lots of time learning from others and have reached to a couple kind folks directly with knowledge of this thing.
I am wondering about others experience with symptoms cycle. I tend to go a week or so being fine and then will have a bad patch that can drag on for days or more where the angina comes and goes. I take nitro as needed but it can just keep lingering for days or week or so.
what are others experience with symptoms in terms of cycles, days, or frequency. Thanks for any input.
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Andy5S
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I have lived with vasospastic angina for many years. It can feel like walking a tight rope managing the condition. Vasospastic angina can be unpredictable.
The condition can wax and wane. My symptoms are usually much less in the warmer weather.
If I over do it, I'll get more severe symptoms. I can have a delayed response to my stressors.
I avoid exercising in the mornings or in a cold environment.
Exercise is important to improve the function of the endothelium however I need to do a long slow warm up and cool down afterwards. I have to keep my heartrate at a certain point, if it goes too high, you've guessed it more vasospasms.
Have you been prescribed any other medication other than nitrates?
Short acting sublingual tablets of GTN or spray are only a temporary fix.
Extended release forms of calcium channel blockers are usually prescribed to relax the blood vessels, to try and reduce coronary vasospasms.
Isosorbide mononitrate tablets along with nitrate patches can again help to reduce vasospasms.
Beta blockers are avoided as beta blockers can make coronary vasospasms worse. I ended up in hospital after being prescribed beta blockers.
Maybe keep a diary of your activities, the weather and what you're eating and drinking, to see if can spot any possible triggers.
As well as the cold, a sudden drop in air pressure will trigger my vasospasms.
Caffeine and artificial sweetners are other triggers for me too.
In the UK nicorandil is another medication used.
Statins are prescribed to improve the function of the inner lining of the blood vessels, the endothelium. Endothelial dysfunction along with hyperactivity of the smooth muscle in the artery walls are thought to be the cause of vasospastic angina.
I go through cycles of increased severity and length of coronary vasospasms. I am awake now with chest pain. Chestpain at rest especially in the night is a classic symptom of vasospastic angina.
I am hugging two hot water bottles at the moment.
After prolonged severe episodes of coronary vasospasms, my heart feels bruised. I have a lingering ache in my chest for days afterwards. I feel extremely tired.
I rest. I manage my triggers which are the cold, emotional, mental and physical stress. It's getting colder now, so I layer up with lots of thermals.
I listen to calming music or podcasts to distract me. I attend Tai Chi and yoga sessions along with practicing meditation, breathing and relaxation techniques.
Do you feel your Cardiologist understands vasospastic and microvascular angina?
Have you been offered any testing to confirm your diagnosis such as a functional angiogram using adenosine and acetylcholine?
I am on all the usual meds you mentioned but I would not say they work great. Well I think initially my expectation was wrong as they will not completely free one from the symptoms but help with severity. I have asked my cardiologist to increase amlodopine to see if there is positive impact on frequency of episodes.
I’m in US and they basically rule everything else out to diagnose and go by symptoms. I have had every standard test possible and of course everything comes back normal. No blocks, no calcium build up (plaque), no functional or structural issues. The only slight thing was borderline thickening of left ventricle. The cardiologist says it’s just due to having high blood pressure and age but borderline is of no concern.
I have same bruised feeling after a bad run. I can have days of intermittent angina. It’s like when it triggers , sometimes it can linger around and keep coming around daily. Then it just goes away for periods of time. ( 1-2 weeks)
It seems to be random and always at rest. I am fairly active with weight lifting and walking (can’t run anymore). I don’t have any issues when exercising. I know everyone seems to have really different experiences and same with meds. I also have learned about the emotional drain as the symptoms can really wear on you both physically and emotionally.
I usually get along and take the nitro as needed. I guess when I have these bad spells, it is tough to grind through. It seems some feel daily , some weekly, and other can go long stretches with out. I guess there is no “common”. That’s what makes this thing tough. Like others , I can’t stand all these pills but what else can one do.
update: interesting about the statins. Here they only give you that for high cholesterol.
I’m just learning about what it feels like and currently do not have a confirmed diagnoses of microvascular angina. I am scheduled for an angiogram in 2 weeks time to confirm or disprove the diagnoses. I’m just also learning that it can completely disappear and return. The last few days I’ve had relatively no pressure in my chest - a little last night but that’s it. Still, from my experience with my arrhythmias and the associated symptoms, I’ve experienced my symptoms coming and going for no reason for this as well so it’s not unexpected.
I also have a structurally normal heart. My main cardiac issues are related to the sodium channels which are not visible through testing. This latest development is very new for me - just a few months. My doc is on top of it though thankfully, hence the angio.
For me it has been just a variety pack of different types or locations of chest pain. The variety has made me do many trips to the hospital for first 8 months or so as it gets you to feel panicky or anxiety which of course makes it worse.
I have learned the following for the different symptoms of this condition.
Chest pain or pressure that is in heart itself. (Also burning sometimes) can actually feel lower in heart or upper but it radiates so hard to tell.
Numbness or tingling in left arm or shoulder.
Pain in the back between shoulder blades.
Odd sharp pinching in the right front side of chest close to shoulder. This pinching hurts but is odd because heart does not seem to hurt.
It seems that all kinds of things start to go wrong during episodes and it can be different. It makes things difficult because you will start to wonder if it’s something else or “did they miss something…” I had to nag my cardiologist and other provider hard to go through all the possible tests to validate as I just had so much anxiety. I even started to push for another heart cath to ensure nothing changed but all tests are always fine. Normally that would be great but when you are suffering it’s not super helpful to be told “you’re fine” while feeling like you may die. I have learned to cope better now that it’s been a while but still tough sometimes. Honestly the hospital is of no value for me because all the tests are always ok.
I know others have been in this dance much longer than I. One thing is for sure, if you are wondering if the care is better in US or EU, well it appears to be the same. At least from what I have experienced and have heard of many others around the world. It’s evolving and that’s great but long way to go. Can’t express how helpful it is to chat with others though!
It helps to be able to build a trusting relationship with your Cardiologist too. I have an admission plan to guide the staff how to manage my admissions. I am in hospital about twice a year on IV GTN for about 10 days.
I emailed my Cardiologist this morning, asking about whether the revisions to my plan had been finished as I am more symptomatic at the moment.
He emailed me back a few hours later while he's away on holiday.
Phew man that would be nice to have that kind of relationship or rapport. That’s just not possible here as they are so slammed with patients and don’t see this condition as to big a deal compared to “real CAD” as I’ve been told.
However I will say this. I can talk to cardiologist nurse via app and ask questions and get updated to meds which is helpful. Just got one today for increase in amlodopine which really did not sit well with me. Still have some of the usual discomfort… On it goes I guess but I lean in my faith a lot and I get through the tough times.
The nurses on the ward know me well too. I am thankful for their compassion and kindness too.
Unfortunately because vasospastic angina is rare, I can have problems when I encounter a new member of staff who hasn't read my careplan.
My Cardiologist has seen me on several occasions while I am having severe coronary vasospasms.
He certainly doesn't suggest that it's anxiety causing my symptoms.
As a group of patients we are often misunderstood by healthcare professionals and others.
Our pain is real and caused by a lack of blood supply to our heart.
A severe prolonged coronary vasospasm feels like being in labour to me.
I have significant ECG changes and small rises in my troponin blood levels.
I go completely pale and feel very cold as my peripheral blood vessels go into spasm.
It can be a challenge for the staff to put any cannulas in.
It's not surprising that our heart feels bruised. It has just gone through an acute episode of reduced blood supply.
Microvascular angina with vasospastic angina is a type of angina/ ischaemia non obstructive coronary arteries ANOCA/INOCA.
It's important to keep microvascular and vasospastic angina as distinct conditions.
They have different causes, symptoms and treatments.
I was assumed to have microvascular angina at first and prescribed a beta blocker as a Cardiologist had also made a biased judgment that I was anxious.
I ended up in hospital. Beta blockers I now know should be avoided if you have vasospastic angina, as beta blockers can make coronary vasospasms worse.
I found having an accurate diagnosis helped me psychologically.
I know why I have my symptoms, the medical staff know and this helps my Cardiologist to know which medications to prescribe.
Something that I find both hopeful and sometimes depressing at same time.. I have seen some folks say after a long period (years) suddenly they stopped having symptoms for a number of years. Eventually it seemed to come back around but one can’t help but relish a long reprieve from these symptoms.
However, it is clear that everyone’s path is different and you just can’t compare to others. I guess that’s the part that can be tough is there is no “normal”. I do get encouraged in knowing I’m not alone in the struggle and I appreciate your responses and others as it really helps!
I agree that we seem to have our own version of our angina without obstructed coronary arteries. However if a person has a presumed or suspected diagnosis it can muddy the waters.
A person may be presumed to have microvascular angina, however following a functional angiogram, found to have vasospastic angina.
The symptoms can overlap.
Though there are some symptoms that seem to occur in patients with microvascular angina more often, such as breathlessness and chest pain on exertion.
People with vasospastic angina tend to be able to exercise and experience most of their chest pain at rest especially during the night.
Microvascular isn't the same as vasospastic angina.
Thinking they are can lead to problems such as prescribing incorrect medication
The illustration I posted is from the European Society of Cardiology's 2024 Management of chronic coronary syndromes, it shows the difference between, obstructive coronary artery disease, microvascular and vasospastic angina.
I’m in Australia and have excellent access to health care. I have other cardiac issues, and this is something new. Thankfully I don’t suffer any anxiety. That’s partly be issue I’m just not that kind of person and partly because I have utmost faith in my cardiologist.
I feel for this who struggle with access to quality healthcare and more so, those who struggle with anxiety. It must be very difficult. I am able to get on with life without too much stress.
It’s interesting how you said you feel almost bruised after an episode. I don’t have that thankfully. My cardiologist went to great length to test if it felt sore when he touched and pushed on the area - I thought this was a bit wowed but it’s probably because of symptoms like you’ve experienced.
Yes the soreness after can drag for some days. However I don’t get shortness of breath, or hardly ever, where others seem to get often. Just no rhyme or reason as to how each of us will fair.
I get a pressure in my chest in the top half. The pressure is more focussed when my left bundle branch is showing. I also have been more fatigued recently and my breathlessness is worse.
My cardiologist is thinking that it may be microvascular angina and the restriction of blood flow to the heart is causing my left bundle branch to kick off.
I took have been diagnosed with vasospastic angina after having a Minoca heart attack. It took a while and a good cardiologist to diagnose it, as I was in and out of A&E a few times.I'm on 10mg Isosorbide mononitrate daily and GTN spray when needed.
Mine comes on normally at rest, and the pain can drop me to my knees, even 25mg of Isosorbide mononitrate doesn't help. I have to just ride it out as best I can. There aren't many cardiologist's who specialise in this condition.
Milkfairy gave you some good advice. I wish you all the best, you're not alone.
I can relate to this I have symptoms off and on which include chest pain which feels like heaviness and tightness varying in intensity nausea and extreme fatigue. I can be fine fir weeks and then these symptoms return I am on medication which I take every day but when I feel bad I just have to go to bed and rest u til I feel better which can take a few days.
I’m able to have a normal life though in between and have learned to manage my symptoms and can usually feel them coming on so I rest ! I find stress is a big factor.
It’s a difficult condition but I’m feeling ok at the moment and haven’t had any symptoms for 5/6 weeks 🤞and last time I was in A & E was 7 months ago I’m still waiting to see cardiologist following this !! But have slowly improved since increasing my medication and haven’t needed to go back to A&E again
Hoping to stay good with the colder weather which is also a factor
I was tested for vasospastic angina because of my Raynauds and atypical angina symptoms (I had a stent fitted which did sort out the typical angina symptoms). I was told they couldn't prove I had vs angina but the test also didn't disprove it. I find cold air certainly triggers the attacks (chest pain, left arm pain etc.). Because of the Raynauds I do pay extra attention to staying out of the cold and this does help. I worry about taking too much GTN because I don't want it to become less effective so I tend to take it sparingly. I'm also on isosorbide mononitrate and nicorandil at high doses. Have you found any specific triggers?
In 12 years I have had no issues of developing tolerance of GTN. Short acting nitrates like sublingual GTN spray are in and out of your blood stream quickly so you tend not develop a tolerance .
It's important to have nitrate free periods of 12 hours minimum if you take oral long acting nitrates like isosorbide mononitrate.
I stagger the time I take my isosorbide mononitrate
Did they use a chemical acetylcholine during yoyr angiogram?
That's the way vasospastic angina is diagnosed rather than by normal angiogram.
I have Raynauds Phenomenon, migraine and vasospastic angina. A hat trick of vasomotor disorders.
Another test for Raynauds Phenomenon is Nailfold capillaroscopy, when they exam the blood vessels in the nail beds.
My Raynauds Phenomenon symptoms improved once I started taking high doses of Diltiazem which I was prescribed to help manage my vasospastic angina.
Keep warm, there is a light frost this morning where I live this morning 🥶
Thanks for the reassurance about GTN tolerance, that was helpful.
Yes, I had the acetylcholine provocation testing, both high and low dose. I was disappointed that a clear answer wasn't given, but I go on the fact that I can link the symptoms to cold and other food issues. Alongside my Raynauds I also have Sjrogrens and Achenbachs so I accept that it's difficult to know what sets what off or influences things. I can't take Diltiazem because I'm on Verapamil but I can only tolerate a moderate dose before my heart rhythm goes mega wonky. I do know that if there's a heat warming device, I'm onto it! Definitely keep warm!
It's good to hear more people are now having functional angiograms with acetylcholine.
You can have microvessel vasospasms which tend to be diagnosed when there isn't an almost complete closure of a coronary artery, when the acetylcholine is injected.
However the person has ECG changes and chest pain.
The treatment for microvessel vasospasms is the same as for vasospastic angina.
The BHF list in their latest 'Understanding Angina' this website as a resource.
it seems some data on this condition is either old or just incorrect. As I go along this journey I have learned both men and women have this and age is also a variant. I’m in early 50’s but I have read about and know of (from my cardiologist) people from 20’s up to 70s and 80s that have this. One thing is a constant and that is nobody seems to be able to understand why this happens or the root cause.
I have come to terms with the reality that I must cope the best I can when I have a bad stretch and listen to my body. Like many it seems like there is this musical chairs of medication and dosages to find what works better for the individual. What works for one may not work for another and it’s a moving target of what works for you this month versus next. (Or maybe year versus next). I still work , stay physically active, and live life. The symptom days can be rough but it is what it is. Fortunately I am an independent consultant and work remote just about 100% of time. So when it gets bad, I can rest or whatever. I think being in the office would be rugged to deal with and not sure how that would work on the bad stretches.
Appreciate the input from the community and it’s encouraging just to know I’m not alone in the struggle. This forum is very helpful!
There has been lots of research into microvascular dysfunction and coronary vasospasms recently. The landscape has certainly changed.
There are now thought to be at least 3 different mechanisms causing the small vessels not to work properly, microvascular dysfunction.
Microvascular angina does seem to affect women more than men, while vasospastic angina affects both men and women more equally.
The main theory is that coronary vasospasms are due to the inner lining of the blood vessels not working properly, endothelial dysfunction along with a hyperactivity of the smooth muscle in the artery walls.
I suspect more causes will be uncovered in the future which hopefully will lead to new treatments.
I also feel we all have our own personal version of vasospastic angina.
It can take time and patience to find the best combination of medication that works for us as an individual, accompanied by lifestyle changes.
It's good you can still work. I had to take early ill health retirement.
The 2024 European Society of Cardiology's Management of chronic coronary syndromes includes for the first time an extensive section on Angina/ Ischaemia non obstructive coronary arteries, the umbrella term used to describe microvascular and vasospastic angina.
See section 5.2.
The ESC guidelines are widely adopted even in the US as best practice.
I have been living with Vasospastic Angina for about a year. It started very vaguely, experiencing symptoms which felt like indigestion - pressure / burning. The episodes frequently occurred early morning on my way to work or at rest. I initially treated symptoms with indigestion remedies not thinking they might be related to my heart.
My triggers are cold air, air pressure changes - damp/misty days, mental stress, and tiredness. Each time I ended up at A&E during a severe attack, I genuinely believed I was having a heart attack - severe pain/shortness of breath/pain in left shoulder and weakness. I underwent numerous tests - no blocked arteries.
I improved over the summer due to warmer temperatures. However, the pressure feeling in my chest is unpredictable - it waxes and wanes. It's now starting to worsen again due to the reduction in temperatures/colder nights and mornings. I take 100mg Isosorbide Mononitrate and use GTN. I have been prescribed statins but I have not started them yet. I required less GTN over the summer months.
I too have thoughts like, 'I hope they are not missing something'. I worry about the future - will I improve or get worse? I try to manage this condition by staying as warm as possible. I wrap up well in colder temperatures and wrap a scarf around my mouth when going outside. Despite wrapping up well, my sensitivity to cold is so bad that I can't stay out in the cold for very long because the pain can become too overwhelming.
I feel exhausted at times and it's hard to figure out how much of this is related to the angina.
Sometimes I can exercise in a normal way without symptoms but other times prevented from doing so.
I find it is a very challenging condition to manage.
I have noticed that if I get really cold for to long it can kick off an episode but I have to be really cold. It seems like extremes are a trigger. (Stress, anxiety, conflict) One thing that I had to change was my reticence to take nitro when I should.
I really dislike feeling like a human pill dumpster with all these meds. However, I now will take nitro pill when I need if symptoms last more than say 20 mins or are really intense. This helped and you just have to take meds when you need to. I almost never have to take more than 1 in a day but there can be multiple days or this odd 1 good day couple bad ones for a week or so. ( fortunately that does not happen to often) Then other times I can just take one and be good for week or 2. I have gone almost 2 months before with no symptoms or very little.
It’s totally random , at rest, and no specific time of day. I eat healthy and don’t do any of the things they tell you not to. Sometimes I wonder about all these meds as I’m not sure some really are doing anything. However I follow my care plan and work with my Drs. I understand the symptoms better now and am not running to ER (guess you call AE in UK) since there is not much they will do. I do have regular checkups 90 days and then regular longer interval with cardiology. They do things different here where you see a nurse practitioner who specializes in cardiology and fully understands this condition and can write scripts. This is the 90 day appointment. That’s the other thing… Man never been to the dr so much in my whole life before this year! Seems like I should have a cot put in the office .. I’m grateful for the good patches and just struggle through the bad ones. They come but also go, just temporary….
This condition is so confusing - good day/bad days. I too feel as though I understand my symptoms better now. Just hope further research will yield more answers to this very puzzling condition. Yes, I also appreciate the goods days, bad ones are tough.
Hello, I take the slow release Isosorbide Mononitrate on a morning and at present, I've required my GTN to relieve tightness/pressure about once/twice a day. I've needed it a few times this week at bedtime - unable to settle off to sleep because of chest discomfort. I know what you mean about the cold weather this week. There has been a sudden change and drop in temperature this week. I'm really dreading winter!
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