Micro Vascular Dysfunction

[Lotsirb]

I have Micro Vascular Dysfunction and am looking for a Support Group. I live in Bristol and am happy to travel up to 100 miles to meet with fellow sufferers or could meet on Zoom or do an on-line chat.

[Milkfairy Heart Star]

Hello,

Welcome to the forum.

There are a couple of support groups on Facebook.

This group is listed on the BHF website. It supports people living with angina / ischaemia

without blocked coronary arteries, ANOCA/INOCA, which includes microvascular dysfunction, microvascular and vasospastic angina.

Unfortunately microvascular and vasospastic angina are still not well recognised or understood by healthcare professionals. You'll find a confusing number of different terms used to describe the condition.

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

Alternatively you may find this website helpful.

internationalheartspasmsall...

There are quite a few of us on the forum who live with either microvascular or vasospastic angina and we try and support each other as much as possible.

[Lotsirb in reply to Milkfairy]

Hello, and thank you for the prompt response.

I've had heart pain for 25 years. When it's worse than normal I end up at our local A&E. Sometimes I'm discharged after they've carried out tests, and sometimes I'm admitted to the Bristol Heart Institute for more tests. Over the years I've had countless tests and three angio grams. Everytime I am told that my arteries are fine and I can go home. This leaves me feeling like a bit of a fraud! However the pains return and most of the time I live with them. A year or so ago it was suggested that I probably have Micro Vascular Angina, (Dysfunction), which until recently was referred as Cardiac Syndrome X . I've looked into on line and the symptoms are spot on. Coincidently a neighbour has also been diagnosed with MVD (as it's now being referred to). We currently share our worries which helps a bit. We seem to have reached the end of assistance from our very caring local GPs and are getting no where with the Bristol Heart Institute, - I recently been told my next appointment will be a year from now, and my neighbour has been discharged completely. It's all rather disheartening especially as the condition seems to cause anxiety and depression. Well' that's got it off my chest and I will take a look at the facebook group which you kindly sent to me. Bye for now!

[Milkfairy Heart Star in reply to Lotsirb]

When I was admitted to hospital in 2012, prior to high sensitivity troponins being used and the knowledge that women's troponin blood levels are lower than men's when the heart has been damaged, I was told incorrectly I couldn't have angina or a heart attack because my coronary arteries are unblocked.

I was presumed to have microvascular angina and the dreaded term cardiac syndrome X was used.

Many Cardiologists still hold onto the belief that microvascular angina is a benign condition, it's not.

In 2017, the BHF adopted the term Microvascular angina in response to an expert patient who acted as a patient advisor to this information on the website.

bhf.org.uk/informationsuppo...

bhf.org.uk/informationsuppo...

My vasospastic angina was confirmed by a functional angiogram using acetylcholine in 2014.

I felt validated to have the cause of my symptoms identified. Living with chronic pain can have a profound negative impact on a person's mental health and quality of life.

I have had some good support from attending a Pain Management Programme, perhaps ask your GP to refer you to a Pain Management Service.

I also have a wonderful and supportive Cardiologist. We co produced my careplan to guide the staff how to care for me when I am admitted.

I have seen over the years a great deal of research and interest in microvascular and vasospastic angina.

A cardiac MRI can help diagnose microvascular dysfunction.

Have you asked to be referred to a Cardiologist who understands microvascular and vasospastic angina?

[Tos92]

Hi Lotsirb,

There is a lovely group on the below Facebook page which I’ve linked that meet once a month or every couple of months in Dorset. It’s set up by other sufferers of Microvascular Angina/Dysfunction and Vasospastic Angina. It is based in Dorset, however. I noticed that you said you were willing to travel up to 100 miles. As far as I’m aware, I do not know of any groups in Bristol, but if you feel you may be interested in the Dorset INOCA/ANOCA group, do request to join the page where you will find more details.

facebook.com/groups/2879606...

The next meetings have been confirmed for September and November 2024.

All the best.

Tos

[Lotsirb in reply to Tos92]

Thanks for the message. I've had several other messages from fellow sufferers since I put my initial entry on to Health Unlocked. It's great to know I'm not alone. Ive contacted the facebook group. Thanks.

[Blearyeyed in reply to Tos92]

Do you know if the groups still do the occasional Zoom meetings or allow some people to video call into face to face meetings? I know my EDS Society still have them even though they've got a number across the UK......maybe it's something that you could suggest to any groups you are in contact with as I'm sure there must be quite a few people about whom would be nowhere near another person with this let alone near a group.

My Dysautonomia group isn't even in the UK!

[Tos92 in reply to Blearyeyed]

Hi Bee,

I hope you’re well.

Yes, it’s been a point of discussion lots of times. The trouble is trying to find someone or some people to host it on a regular basis so that there is some consistency and members are getting value from these Zoom meetings.

We have lovely group members who meet face-to-face if they are within a reasonable distance of each other however, as you know already, most of us can’t join in those meetings due to the location!

[blaser]

Hi Lotsirb

I fully understand what you are going through. I too have whatever it’s called and I live in Dursley.

I have had numerous troponin rises in thousands at times and diagnosed wrongly even sent straight home only to be blue lighted a few hours later straight to Cath suite .

I stayed at BHI for 2 weeks oh and I had an N Stemi in 2017 in the hospital waiting for a lift home after being discharged at 4 am ! That was in Norwich .

I live in Dursley and a lady who has this is in Weston .

I don’t normally say to much on here and try to just get on with life but been kicking off again more frequently due to me having to go back to work .

[Lotsirb]

Thanks for replying. It's great to know I'm not alone! It's a tough illness, isn't it. I've come away from A&E and BHI so many times with them unable to find anything wrong that I often feel like a fraud. However the pains keep returning and puling me down. We'll keep in touch I hope.

[fishonabike]

welcome to the world of people with poorly understood conditions - I know you have been in it for years already so you know the effect it has on you

the good news is that INOCA/ANOCA is getting more attention and awareness is increasing BUT you will (as you know) continue to encounter medics who haven't a clue - so I hope that you have been brushing up on your self-advocacy skills

with a diagnosis you can now find out more about your condition, this will be helpful as you need to be your own expert and stand up for what you need in the face of lack of awareness and dismissive attitudes

what you have is real, distressing and you deserve good care