Having been diagnosed in June 23 with microvascular angina and coronary spasm I wondered how others cope with this condition.
My follow up appointment will not be until next May therefore I don't have a treatment plan in place yet.
I have halved the dose of tablets prescribed because of side effects but there is probably something else to try.
At the moment I struggle to get up hills even quite a small incline and generally feel easily tired,
hope to hear from others with this condition.
Hello Mitzi-
Welcome to the forum.
I was diagnosed with vasospastic angina after I was admitted to hospital 11 years ago with a suspected heart attack.
My coronary vasospasms were confirmed by an angiogram with acetylcholine.
How has your microvascular and vasospastic angina been diagnosed?
Microvascular and vasospastic angina are types of ischaemia/ angina no obstructive coronary arteries INOCA/ANOCA.
When I was diagnosed, there was very little knowledge about microvascular and vasospastic angina. My care has improved over the years.
Microvascular angina is thought to be due to the inability of the small blood vessels of the heart to dilate or stay dilated in response to extra demands like exercise, microvascular dysfunction.
This tends to cause chest pain and breathlessness on exertion.
Vasospastic angina is rarer and due to the transient constrictions of the coronary arteries. This type of angina typically causes chest pain at rest, especially between midnight and 6am.
Most people living with coronary vasospasms can exercise.
I can exercise, I only tend to experience chestpain on exertion during an unstable angina phase when I need to be admitted to hospital.
It can be trial and error to find the best combination of medication that will help you best as an individual.
I suggest you contact your Cardiologist or GP regarding your issues with the side effects of your medication. It's important not to change your medication without their advice.
It may help to keep a diary of your symptoms to see if you can identify your triggers.
Common triggers are the cold, emotional, mental or physical stress.
I manage my stress carefully.
I practice yoga, Tai Chi, Mindfulness Meditation and breathing and relaxation techniques. I walk my dog everyday.
The BHF has this information.
It it includes a link to a Facebook support group, which you may find helpful.
bhf.org.uk/informationsuppo...
bhf.org.uk/informationsuppo...
This website was created by four patients with over 50 years combined experience of living with microvascular and vasospastic angina. They are supported by 30 world expert Cardiologists.
You'll find the latest research articles and further ideas about how to manage the condition.
internationalheartspasmsall...
The forum has other members who also live with microvascular and vasospastic angina. Hopefully they will be along to share their experiences with you too.
May I jump on here and ask a question? If someone has microvascular or vasospastic angina does a GTN spray relieve it?Hope you don't mind me asking.
Of course I am always happy to try and help.
There seems to be some evidence that GTN may not always relieve the chest pain of microvascular angina.
GTN usually relieves the chest pain of a coronary vasospasm for those with vasospastic angina.
GTN though also helps reduce the symptoms of oesophageal spasms too, which can feel just like angina. For this reason the response to GTN isn't the best way to diagnose microvascular or vasospastic angina.
I have a confirmed diagnosis of vasospastic angina, however I don't use GTN spray. It helps then I get worse rebound vasospasms.
Thank you. I have a confirmed diagnosis of AF, but there has always been something else going on. The cardiologist said it looked like angina but was puzzled that GTN didn't work, and it is usually at night and when I'm not doing anything. Your description was very reminiscent of what I experience, which is why I asked.Many thanks.
Perhaps ask your Cardiologist to consider whether microvascular or vasospastic angina are causing your symptoms?
Thank you, I will. I've no idea when as I've only had 2 cardiology appointments in the 27 months since my diagnosis! But I have a notebook that I use to list all the questions that come into my head, and will add it to that.Thank you
Maybe print out the information from the BHF website about microvascular angina and discuss your symptoms with your GP ?
Ha ha. I only get a weekly synopsis of Healthunlocked/BHF stuff. When I saw vasoplastic angina etc., I immediately thought that I'd tilt it in your direction - as a knowledgeable patient. You beat me to it. I hope you are OK. Didn't you have a recent spell in hospital? If so, I hope you're better. 😀
Hello, lovely to hear from you!I hope all is well with you and your family.
I recovered from my last admission pretty well, thanks.
I saw my lovely Cardiologist a few weeks ago. I have to keep in close touch with him and not put off going into hospital, which I do!
I have a face to face appointment every 4 months, so I am being kept an eye on 😊
I have two articles about to be published that I am co authored with some Profs about Vasospastic angina.
That sounds brilliant. Things going well here. I claim to be semi-retired, but it's not very semi. Also managed to kick-start a diet by doing something I don't do: subscribing to a 30 day programme involving commercial food supplements. It really helped. Not on the programme now, but still have lost about 5kg ... more still to go. 😀 Have also ended up chair of our local practice's patient participation group. It's more a case of giving it CPR as it's never really got going and the pandemic did for it. Never mind, it helps keep me out of trouble ... and with luck we'll help get the practice working a bit better.
Thank you for messages, most helpful. I was diagnosed by an angiogram and now need a treatment plan on meds and how to help myself.
I would like to thank everyone that replied but not sure how to do it on this site.
Have you asked your Cardiology team for a treatment plan?
Do you know if your coronary flow reserve was measured and whether your arteries were seen to go into spasm during the angiogram?
Sometimes people are given a presumed diagnosis when their coronary arteries are seen to be unobstructed during a routine angiogram.
In my experience we all seem to have our own individual version of the condition.
Many people have presumed diagnoses which complicates things.
When I was first diagnosed 11 years ago there was very little information available, no support groups.
The first thing I did was keep a log of my symptoms and how I responded or not to my medication.
I attended a Pain Management Programme.
Then worked on reducing my stress.
I have a careplan which was co designed by my Cardiologist, Pain Team, Clinical Psychologist and myself.
I have had to be persistent as unfortunately there is a lack of understanding about microvascular and vasospastic angina amongst healthcare professionals.
It has thankfully improved over the years.
I created my own treatment pathway with the support of my Cardiologist.
Have you been prescribed isosorbide mononitrate?
This has the unpleasant side effect of a headache, which can last upto 2 weeks.
I take mine in the late afternoon as I experience most of my angina during the night at rest.
Nitrates, with Calcium channel blockers are usually prescribed to help prevent coronary vasospasms.
Beta blockers can help microvascular dysfunction however can make coronary vasospasms worse.
It takes time to find the best combination of medication that will work best for you as an individual.
If the medication isn't helping I suggest you contact your Cardiologist's medical secretary and ask to be reviewed before May.
Hi again, I wonder if you know what the drug ranolazine is supposed to do? I am on that and diltiazem since June when diagnosed with MVA and coronary spasm.
I am worse since June and am not sure if result of tablets or things are getting worse. I have no plan as am on waiting list to see a cardiologist. My GP cannot help but is trying to get me seen sooner, With your knowledge and speaking to others is it usual to get very bad days/weeks when the pressure is frightening and going to bed only makes things worse? in fact sometimes I get up and sit in chair for couple hours ,
It is a help hearing others contributions, especially those that have MVA for a few years. Looking back my symptoms started 4 years or more ago but all previous tests did not show a problem until angiogram and then next step with wire and this brought on a spasm,
Hello,
I am really sorry to hear you are having such difficulty accessing a Cardiologist.
Have you got a follow-up appointment with the Cardiologist who carried out your functional angiogram and diagnosed your microvascular dysfunction and coronary vasospasms?
Ranolazine is thought to improve the microvascular perfusion reserve index in patients with MVA and reduced Coronary flow reserve.
It's meant to improve the blood flow through the microvessels to the heart muscle which should help prevent myocardial ischaemia, leading to fewer symptoms of angina.
Diltiazem is a calcium channel blocker and helps to reduce coronary vasospasms by relaxing the muscle in the artery walls.
Ranolazine is a bit of a marmite medication either you love it or you don't.
I didn't get on with Ranolazine at all.
A consensus document was produced a few years ago and gives some suggestions of how to treat microvascular and vasospastic angina. Perhaps share this with your GP?
academic.oup.com/eurheartj/...
It's getting colder and cold is certainly a common trigger for many of us.
My angina is beginning to become unstable as it always does this time of year.
I am very fortunate, I have a fantastic and supportive Cardiologist whom I see every 4 months.
I have strict instructions to get in contact with him before I need admitting to hospital.
I hope you can get a review of your medication from a Cardiologist sooner than May.
academic.oup.com/eurheartj/...
Hi Mitzi,
I’m sorry to hear you have the diagnosis of both MVA and coronary artery spasms. I had a coronary artery spasm last year which lasted long enough to trigger a heart attack called a MINOCA (myocardial infarction in non-obstructed coronary arteries).
My treatment plan is constantly being changed and I have still yet to find one that works for me. It is usually a trial and error approach until you find the right cocktail of meds that work for you.
I have also experienced side effects to different cardiac meds that I’ve been prescribed for my condition. I found out that I am quite sensitive to cardiac medications which makes it slightly difficult for me to find the right combo of drugs.
My angina affects me daily, but mainly on rest. It can spread to my arms, shoulder blades, upper back and jaw. I try to be aware of my triggers and avoid them where possible such as the cold, extreme heat, and stress. For example today, I had a bit of a stressful event this evening which led to an increase in my chest, arm and back pain.
I have developed a bad pattern of trying to do everything that I need to when I’m having a good day but later regret it when my symptoms flare up. So I would say try and pace yourself with everyday activities.
It can be difficult to find a specialist in our condition but not impossible. I have currently booked an appointment to see a specialist privately for the first consultation with the hope of being referred to them through the NHS afterwards. My GP has been a little bit more sympathetic towards my situation this year and seems more willing to help. It can make life easier for you if you have physicians that are actively involved in helping you treat your symptoms and condition which I’ve struggled with a lot before. I am currently also being treated for suspected oesophageal spasms which can be excruciating.
There is a website which has a list of specialists in our conditions which I will link below, although it is not an exhaustive list of every INOCA specialist you might find someone that is suitable for you if you wanted to change cardiologists at some point. There are around 38 international specialists in INOCA listed.
There are a few Facebook groups which have been set up to help people with our conditions. The one below works closely with INOCA International which you might benefit from joining too if you are interested.
facebook.com/groups/2879606...
I believe there are now a handful of us with these conditions on this forum. I hope they come by with their experiences and please know that you’re not alone in all of this.
All the best.
Tos
Hi Mitzi, welcome to the forum and sorry to hear your news. Not sure of your age but I will share my story. Please do not be alarmed it is all good now, but very much a cautionary tale of pursuing things and not being fobbed off. In 2019 I went from being a regular runner and swimmer to not being able to exert myself at all in the space of a month. Went to GP who diagnosed angina and gave me a spray. Referred to hospital but all my bloods came back fine, struggled with the treadmill stress test but not so badly the doctor was overly concerned. Essentially told that if my symptoms got worse to go back to GP. Decided to get a private referral. Consultant suggested an angiogram - telling me as I was fit and healthy I would not get one on demand through the NHS. He also suggested micro vascular angina and mentioned that as I had gone through menopause there maybe a link that the issues had arisen as my oestrogen levels had dropped. This is not really discussed as much as it should be. Anyway I paid for an angiogram really thinking it would be fine - it wasn’t. I had a 99% blockage in my left LAD. Luckily the consultant was able to fit a stent there and then. He explained after the procedure I was about 4 weeks away fro a catastrophic event. I am now 4 years on - I take 5 lots of medication and manage my lifestyle to avoid stress and keep fit pretty much as I did before. Lots of walking and cycling etc with no problems. It might not be possible but if you can I would push for an angiogram. ECGs for me all came back clear when clearly there was a problem. Do pursue further investigation. Good luck and keep us updated.
LavenderBee, you make a very good point.I suspect that some women are being assumed to have microvascular angina without proper testing.
I was assumed to have microvascular angina at first, prescribed beta blockers which made my angina much worse and I ended up in hospital with unstable angina.
I learned later when my vasospastic angina was confirmed, by a specialised angiogram that beta blockers are contraindicated if you have vasospastic angina.
Thanks Milkfairy, I do recall being surprised that a GP heard my symptoms and diagnosed on the spot. My consultant was really honest about the angiogram situation-he explained that presenting as I had, not overweight, non smoker, regular exercise etc meant in the NHS system I would not realistically have been able to get an angiogram. So really an angiogram is the way ahead to ensure diagnosing is accurate and the correct medication and treatment can be implemented quickly. It seems the way the system works creates unnecessary stress for patients. The one thing that is really our enemy.
Anxiety is indeed our enemy. There seems to be a lack of awareness that heart disease can effect women differently.
You may find this article from the European Heart Journal interesting.
academic.oup.com/eurheartj/...
The Cardiologist author is actively researching how women with chest pain, when admitted to A&E, are treated differently and have poorer outcomes than men.
Hi Mitzi I really hope you didn't make the decision yourself to halve your medication because this is the worst thing you could ever do.I'm still taking 5 different meds from having my ha earlier this year plus was given that spray you put under your tongue, recently something awful has happened which affects me greatly and caused me severe stress!! About 2 weeks ago I was flat out on wet grass clutching such severe chest pains waiting for my son to bring me my spray. I thought it was the end for me. Next day I spoke to a doctor who explained to me that the meds I was taking wasn't strong enough. We are given our spray which should be with us at all times just in case our damaged hearts have a spasm but add stress and it gets a lot worse. He told me that the stress hormones our body release cause the same thing to happen to the heart. He has given me Isosorbide Mononitrate 25mg per day. I am still experiencing a huge amount of stress but so far so good. He did say that next time call 999 to get a reading done! Anything with the heart I wouldn't hesitate to call 999 now, I have to stop being stubborn like many of us are regarding our health, we don't want to go to hospital or we don't want to waste anyone's time. The thing is those people, 1st responders, ambulance crew, doctors, nurses etc are there for us, we pay taxes so we can have them on hand when we need them most, we are not wasting their time, it's their job and probably glad that at the end of their day they got to save a life or help prevent a death. I had a close friend who died from ha because he was too damn stubborn to call an ambulance, maybe he would still be around if he had just called 999
Wishing you good health
Gracietreacle
Good advice. Always call 111 or 999 when experiencing chest pain. For us hearties, we never know if there’s something more sinister going on as I had a heart attack despite my ECG and observations coming back fine last year. It was only until I was taken to the hospital and my bloods showed elevated levels of troponin that it was confirmed I had a MINOCA.
I hope you are recovering well now.
Tos
I seem to have MVA although it has not been confirmed with the Gold Standard test that Milk Fairy mentions, so it is in effect "suspected". I get chest pain on exertion and the pain disappears fairly quickly when I rest. I find that after one pain episode I can get on with my walk without suffering further pain, or at least with less pain than the first episode. Reading some descriptions of the problems others are suffering I feel I have, for the time being, got away quite lightly! MilkFairy posted a link to some research which stated that about 40% of angina sufferers have no obvious blockages in their large arteries so MVA may be far more common than we think.
My mother was diagnosed with angina in her early 60's and lived to be 95, before dying of something completely unrelated. As far as i know she had none of the tests that are currently available. She was just put on the standard cocktail of drugs which never changed in all that time. It is quite possible that she had MVA as well, as we seem to share the same medical conditions!
My pain doesn't seem to be relieved by the GTN spray.
You have a reply here from Milkfairy who is the absolute expert on MVA.
Hi, I have Mvd and CAD . Diagnosed just over a year ago , I'm still learning to live with it. I'm on a lot of medication, my doctors and cardiologist doesn't know anything about Mvd so we are all working together. Try and pace yourself doing things as if you over do it it can cause a delayed reaction meaning you could have an angina attack later on in the day or the next day, it is a very unpredictable disease. We have an excellent support group on Facebook. Take it day by day ❤️❤️
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