Microvascular disease

[kr29]

I have had 2 stents fitted and when things didn't improve I was given a stress MRI test and the results are I have microvascular disease. I am on lots of medication but still have periods when i get chest pain, fatigue and breathlessness. The GTN spray does little to help and my GP says i should go to A and E and be put on a GTN infusion. I have done this twice now and end up in hospital for at least 3 days. Does anyone else suffer from microvascular disease, and how do you deal with the bad times

Thanks

[MichaelJH Heart Star]

Hello and welcome to the forum! MVA is something I have limited knowledge of. There are a number of suffers on the forum and I imagine one or two will be along shortly.

[kr29 in reply to MichaelJH]

Thanks

[Milkfairy Heart Star]

Hello kr29

Welcome to the forum

I have lived with Coronary vasospastic angina causing spasms in my microvessels and coronary arteries for 7 years. I also have spasms in the blood vessels in other parts of my body too.

I have recently spent 8 days in hospital on an IV GTN infusion and a patient controlled analgesia pump of morphine.

I have been in hospital 12 times in the last 7 years however I manage to stay out longer each time.

It really important to establish a good relationship with your Cardiologist . It takes time and patience to find the best combination of medication that will work best for you.

If you are not under the care of a Cardiologist ask your GP to refer you to someone with some knowledge of Microvascular angina or is willing to learn.

I have a written admission plan for the staff to follow when I am admitted.

It was written by my Cardiologist and me with input from the Pain Management team and endorsed by 2 Professors of Cardiology who are experts into Microvascular and vasospastic angina.

It is a challenging condition to live with as you are learning to live with not only at times severe pain but the fear and anxiety this pain can make you feel.

I attended an 8 week patient management programme where I learned various strategies such as Mindfulness meditation and CBT. Learning to pace and rest is important.

I also learned about the various theories of pain which helped me understand my pain better.

I attend TaiChi and Yoga classes. I exercise under the guidance of a physiotherapist.

I am learning to paint and I tend to my garden.

I eat a Mediterranean diet.

I volunteer.

I use a TENS machine , oxygen and use visualisation a breathing techniques when I am having a bad run of pain.

I have a access to a Cardiac psychologist.

The BHF has the following information about MVA and vasospastic angina.

Both conditions at present are poorly understood and recognised.

bhf.org.uk/informationsuppo...

bhf.org.uk/informationsuppo...

bhf.org.uk/informationsuppo...

It is encouraging that your Microvascular dysfunction/ disease/ angina has been recognised.

There are others around too. We are all effected differently and have our own strategies to cope. There is no wrong or right way just what helps you best.

I hope this helps. I am a bit of a research geek and if you would like more information just give me a shout.

Good luck.

[kr29 in reply to Milkfairy]

Thank you so much for such a detailed response. I am under a London cardiologist who has expert knowledge of my condition and I am seeing him next month. I am also trying to forge relationships with my local hospital but I find that the hospital teams do not seem to have adequate knowledge of the condition. We are still playing around with my medication and things are much better than a year ago

Thanks for all your information and links. I am trying to adapt and will shortly reduce my hours at work which i think will help. I have taken up yoga and do other exercise when i can to help with the mental side of the condition. I used to be very fit and active and my initial diagnosis was a great shock which has taken a while to come to terms with.

Its good to be in contact with other people with the same condition