Microvascular angina: Hi folks, I’m... - British Heart Fou...

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Microvascular angina

Wildswimmer73 profile image
21 Replies

Hi folks, I’m looking for some advice and support regarding Microvascular angina in women. I’m taking a lot of medication and had an awful experience during the cardiac stress test which had to prematurely stopped. I was diagnosed over a year ago (had an angiogram as an in patient) and at one time the angina was well controlled, but now I seem to be going through regular bad patches.

Has anyone experienced having on going chest pain / chest tightness over several hours with the GTN spray sometimes working and sometimes not? Is it normal to feel utterly crap / very tired for several days at a time? Sometimes the pain / breathing difficulties are severe, sometimes it’s much milder but debilitating none the less. Occasionally my heart races or feels like it’s ‘flip - flopping’ and I’m finding it harder than ever to do any exercise. I’m seeing the cardiologist again soon and I don’t want to come across as a complete hyperchondriac / neurotic, so I’d be grateful if anyone could share if they’ve had similar experiences and if this is generally how Microvascular angina is and I just have to learn how to cope with it. Thanks.

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21 Replies

hello

Being diagnosed / recognised is the biggest step towards progress and it’s good to see that you have been diagnosed,

I can certainly relate to your symptoms (except the flipping) and am being tested soon to determine if I have microvascular issues.

There is a member on here who is very very knowledgeable and I couldn’t and wouldn’t presume to advise with confidence myself, this person has helped me a great deal. I’m sure they will be along soon.

In meantime here are some links in case you don’t have them already:

bhf.org.uk/informationsuppo...

facebook.com/groups/4913951...

facebook.com/groups/2879606...

Good luck, it does help to learn as much as we can, then we can better understand cardiologist and ask key questions.

Oh another key tip I’ve had is write all your questions down before you meet cardiologist and if possible take someone with you as we rarely fully take in what they say😊 good luck.

Sewing19 profile image
Sewing19 in reply to

I’ve been having a dull ache above my heart for several months. It’s in exactly the same place as the pain I had with my heart attack in 2021 which was the only symptom I had. None of the usual heart attack symptoms. With being female and a Type 1 diabetic for 40+ years apparently lack of HA symptoms is quite usual and what I’ve read on this forum confirms this I ended up with triple bypass a week later.

The pain can come on at any time of day. When doing nothing in particular, when walking, ,when i wake up . I’ve just started to read, on this forum, about Microvascular Angina. The cardiologist started me on Isosorbide Mononitrate in February. I’ve had Echocardiogram and stress echocardiogram and both are. clear. Waiting for cardiologist’s letter as I think I’ll be having an angiogram next.

Good to have this information for when I next speak to cardiologist.

Thank you. ❤️

in reply to Sewing19

Hello please do read Milkfairy’s responses below as they are the expert on this and there is a particular type of angiogram test with acetylcholine that might provide clearer answers but glad your getting an angiogram and that they are investigating, good luck with cardiologist. 👍

Sewing19 profile image
Sewing19 in reply to

Thanks very much. All information is good to have, even when I forget most of it 😀 I’ll write my questions down 🙈 and check out the links. Take care ❤️

in reply to Sewing19

I’m seeing a surgeon tomorrow about surgery being an option for my congenital heart defect, I too have written my questions and I also wrote out how I have been feeling, symptoms and how affecting my daily life. Really helps. Especially if I start crying I’ll just hand him the piece of paper 😂 you take care too.

Sewing19 profile image
Sewing19 in reply to

I hope that your appointment goes well tomorrow. It can be very emotional so I’m with you on that. Since my heart problems began I am much more emotional especially with music. The choir I belong to are getting used to me crying during certain songs. 😢 ❤️

heart.bmj.com/content/109/2/88

facebook.com/groups/6267594...

Wildswimmer73 profile image
Wildswimmer73 in reply to

Thanks for forwarding the links, they look really interesting.

Milkfairy profile image
MilkfairyHeart Star

Hello Wildswimmer73,

Welcome to the forum.

Hidden has already given you some good advice.

I have lived with coronary vasospasms for over 10 years. Microvascular and vasospastic angina. I have transient constrictions of my coronary blood vessels. I also have migraines and Raynauds Phenomenon.

My vasospastic angina is very unpredictable and resistant to treatment. I usually end up in hospital about once a year for treatment with IV GTN.

I can usually exercise however I tend to get chest pain later at rest and in the night.

I will also experience chest pain on exertion when I am in an unstable phase which preceeds a hospital admission.

Keeping a diary can be helpful so you can try and spot your triggers.

Mine are the cold, emotional, mental stress and doing too much.

I spent 3 days in bed between Christmas and New Year. I had just done too much. I will have unstable phases with periods of debilitating chest pain. It exhausting, feeling awful, so tired I could cry.

When you had your angiogram did they measure your coronary flow reserve , and how your blood flows through the small vessels?

This is how microvascular dysfunction is diagnosed.

Was acetylcholine used to to diagnose coronary vasospasms?

It can take sometime to find the best combination of medication that works best for you as an individual.

The BHF also has this information about vasospastic angina.

It includes a link to the largest and longest

established Facebook group

facebook.com/groups/6267594...

bhf.org.uk/informationsuppo....

You may find this website helpful. It was created by 4 patients with over 50 years experience of living with microvascular angina and coronary vasospasms . They are supported by 30 world expert Cardiologists .

Here's a link to their coping strategies section.

internationalheartspasmsall...

The group was included in the Lancet Women's and Cardiovascular Disease Commission Report website.

internationalheartspasmsall...

There are a few of us on the forum who live with either/ both microvascular and vasospastic angina. Hopefully they will be along to share their experiences with you too.

One interesting thing about GTN , some research is suggesting is that it is not as affective with those living with microvascular angina.

Wildswimmer73 profile image
Wildswimmer73 in reply to Milkfairy

Many thanks Milkfairy for taking the time to reply with a lot of really helpful information and the links which I’m working my way through. It’s also really helpful to talk to other people in a similar position to me.

I was an endurance athlete and have suffered from asthma all my life. My increasing breathing difficulties, chest pain and struggling with exercise was initially put down to worsening asthma, but as soon as I saw an asthma specialist I was referred to cardiology. I was diagnosed within four months after a perfusion scan / stress test which went horribly and an angiogram I had as an in patient (I had the ‘good fortune’ to collapse whilst at the GP and ended up in cardiology for a week). I don’t think I’ve had any of the other tests you mentioned but my cardiologist is great and didn’t hesitate with the diagnosis.

My triggers are mostly exercise, cold and emotional stress and I can certainly relate to the exhaustion you also feel. Compared to other posts I’ve read it looks like I’ve had very good care and have been seen very quickly. I’ve made lots of lifestyle changes which have helped, I just find the unpredictability difficult to cope with and the inability to exercise at anything other than low intensity (when I’m not going through a bad patch) also very challenging.

Milkfairy profile image
MilkfairyHeart Star in reply to Wildswimmer73

I was also very fit before I developed vasospastic angina.

Good to hear you have a good Cardiologist. The knowledge about microvascular and vasospastic angina have certainly increased since I was first diagnosed.

On the International Heart Spasms Alliance website there is a video by an expert patient by experience who dicussess Cardiac rehab which you might find helpful.

internationalheartspasmsall...

Have you been offered cardiac rehab?

Living with microvascular and vasospastic angina is like walking a tight rope, under which you've built a safety net.

Your safety net maybe Tai Chi, breathing and relaxation to manage your stress.

Keeping warm.

Taking your medication.

Exercise within your limits.

Finding ways to still have joy and happiness in your life.

Wildswimmer73 profile image
Wildswimmer73 in reply to Milkfairy

Hi Milkfairy, I’ve just come out of hospital after having been admitted earlier in the week with unstable angina. I’m now taking nicorandril as well as all the other stuff but I haven’t been offered cardiac rehab, perhaps because my cardiologist thinks I know how to use a heart monitor, but who knows. After the morphine I was put on an IV with GTN which I thought worked well. Just so glad and relieved to be back home.

Milkfairy profile image
MilkfairyHeart Star in reply to Wildswimmer73

I am sorry you have had a hospital admission. I hope you are feeling better.

It's good to hear that you received the appropriate treatment.

I end up in hospital about once a year on IV GTN and IV morphine.

I usually feel very tired and start returning to exercise gently after an admission.

As a group of patients we often get overlooked and don't get invited to cardiac rehab.

Cardiac rehabilitation isn't just about exercise.

Some hospital only offer cardiac rehab to patients who have had heart attacks, surgery or stents.

Perhaps contact the cardiac rehab team and ask if you can have cardiac rehab.

See this post about the latest standards recommended by the British Association of Cardiovascular Prevention and Rehabilitation.

healthunlocked.com/bhf/post....

Silvertail profile image
Silvertail

I know I have had microvascular disease for most of my life, however not diagnosed until 2012. My stress tests have been discontinued after a short times because of the pain etc. My latest cardiologist does not appear to put much stock in the syndrome, although I have not really discussed it with him. Two other cardiologists have said I do have it. I am on heaps of medication for my cardiac problems but still get chest pain if I walk up an incline, or too fast, or far, plus breathlessness. GTN usually helps it, sometimes it goes away when I stop walking.

Wildswimmer73 profile image
Wildswimmer73 in reply to Silvertail

Thanks for replying Silvertail, I’m sorry to hear that you’ve had this most of your life. I find GTN a bit unreliable, sometimes it works really well and at other times it only helps a bit. I’m trying to get some fitness and self confidence back but it’s not easy when I try something and then end up in A&E (I tried yoga which was a disaster!).

Sunshinebrew profile image
Sunshinebrew

hello

I also suffer with this debilitating condition and also have stents in one of my arteries.

It took a long time as in a few years to get on the right medication for me and during this time I gained much support from this website and in particular from milkfairy who is so knowledgeable this helped me a lot and so I’m just adding my support and on a positive note for me once I got on to the right medication my symptoms lessened and my life has improved. I am able to exercise and live a normal life.

However I do sometimes overdo it and then I need to rest for a few days to recover my triggers are mainly emotional stress very cold or very hot weather and just doing too much and I often get pain as a result of this later on when I’m resting.

I don’t think it goes away completely and you do have to manage the symptoms.

I wish you well

Wildswimmer73 profile image
Wildswimmer73 in reply to Sunshinebrew

Thanks for taking the time to reply Sunshinebrew. I hope one day to be able to confidently exercise again, but it’s hard when it can be so unpredictable and I end up in A&E after trying yoga 🧘‍♀️. I definitely get pain later on when I’m resting and it’s useful to know that this is part of the condition.

Sunshinebrew profile image
Sunshinebrew

I’m sorry to hear that I’ve certainly had my times in a and e also and it’s taken a long time for me to feel confident exercising and making sure I don’t do too much it’s difficult to get the balance right and scary when you’re getting pain I sympathise it’s such a difficult condition to diagnose and to treat. Also very challenging to live with but it can be done.

Poppy451 profile image
Poppy451

Hi Wildswimmer73

I can sympathise with you about not being able to excercise. It is very frustrating indeed. I like swimming and walking and yoga. The trouble is I feel ok then do too much and am in pain later and the whole next day. I really cant walk very much at all. It is a beast this microvascular angina. I can do yoga allthough some days less than others. You do get some very gentle excercises and then some others more of a workout. I hope they can figure out the best medication to help you. What are you taking?

Wildswimmer73 profile image
Wildswimmer73

Thanks Poppy451, I’ve just come out of hospital having been admitted during the week for unstable angina. I’m now on nicorandril as well as verapamil and isosorbide mononitrate. Had IV GTN whilst I was in which I thought worked well. Apparently I’m going through a bad patch and the cardiologist says that the disease tends to wax and wane.

Poppy451 profile image
Poppy451

I am sorry to hear its been so bad but its good you got the treatment you needed. I hope you get better . Stay warm and rest well.

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