Hi all, 2 weeks post diagnosis of coronary micro vascular dysfunction and vasospastic angina and I’m feeling a little bit low.
it’s not helped by the fact I am getting conflicting information as to whether my diagnosis is minor or important. My GP has classed it as minor but a quick search of google (I know I shouldn’t) and there are articles from the NHS and governing bodies saying different.
I am on my new meds but finding I have to take the GTN spray when walking and when at rest. I am seeing my cardiologist next week so will discuss with them. But if anyone here has experienced the same would be good to know x
Written by
Pinky20J
To view profiles and participate in discussions please or .
It's difficult when professionals seem to underplay the importance of a condition. One GP at our practice says it's nothing whilst another says she knows nothing about it as she's not a cardiologist. Not very helpful. From my perspective, I deal with it my own way, trying to find out what the triggers are and how to either avoid them or minimise them. For me, cold air is a killer (I also have Raynauds) so I take a GTN before I go out and always have a scarf over my nose. I've also found that prolonged tachycardia (either from my A Fib or heavy exercise) will set off the pain so again, where I can, I take GTN before I exercise and at the start of an A Fib episode. It's all about being in control. Whether it's seen by others as a big mega issue or a nuisance, it bothers me and interferes with my life so I find ways to manage it. I don't really care what the GP thinks. I think the best thing is to note when you have pain, what was happening beforehand? Ask yourself if there is a trigger, whether you can do anything about it. Be in control as much as possible, but also know that there will always be good days and bad days and you just have to see them through.
Wonky_heart makes a good point, whatever a doctor says a condition which affects how you live is important To You and you are the unimportant person here.
You are a vital member of your care team, so find out as much as you can take in, keep track of what is going on for you and help yourself to be clear about your needs with you doctor.
Microvascular issues are still poorly understood by many cardiologist, so it is hardly surprising that your GPs are struggling to understand your situation
Some of the members here are very knowledgeable about these conditions, notably Milkfairy , and I hope they spot your post soon and offer more support and info
I am into my 13th year of living with vasospastic angina, I also have Raynauds Phenomenon and migraines.
Well it's been a journey as they say!
I have seen a shift in attitudes and knowledge about microvascular and vasospastic angina over the years.
At first I was told I was living with a benign nuisance of a condition and even worse told by a specialist at a leading hospital in London, that I would be more likely to die of breast cancer than heart disease.
The latest research does suggest that microvascular and vasospastic angina are serious heart conditions.
With medication and other strategies these can be reduced.
The biggest hit we take is how microvascular and vasospastic angina effect our quality of life.
As well as trying to come to terms with a life changing diagnosis we also have to battle with the ignorance of healthcare professionals.
I now don't expect any healthcare professional, even Cardiologists to have much knowledge about vasospastic angina.
I do however expect them to read my careplan and respect my lived and expert experience.
It can take time to find the best combination of medication that will work best for you.
When I was first diagnosed, I kept a detailed diary, recording my activities, the weather, my medication, life events, heart rate, blood pressure, diet, and my pain.
I learned about my triggers.
Which are the cold, emotional, mental and physical stress. Caffeine, low air pressure and a high heart rate.
I attended a Pain Management Programme which helped me emotionally respond to my pain differently.
I also saw a Clinical Psychologist who helped me to manage my PTSD which I developed due to my poor experiences of care.
I also practice yoga, Tai Chi and Mindfulness Meditation. Which all help me both physically and mentally.
It's early days for you, be patient and kind to yourself. It's taken me sometime to get to a place of acceptance.
I now have a great team at my local hospital.
I have an agreed careplan which is on the electronic patient records system of the hospital.
I suggest you print this article out and give a copy to healthcare professionals you encounter who have little understanding of vasospastic angina.
A patient is a co author and this is an important quote that I direct healthcare professionals to read.
'This group of patients requires empathetic and compassionate care since many could develop a distrust of healthcare professionals and poor experience of care. Clinical staff need to be aware of the psychological impact of VSA pain on their patients. Without timely adequate management, coronary vasospasm can lead to depression, anxiety, distress and even post-traumatic distress disorder.'
My Cardiologist uploaded this article onto my medical records too.
Hello Pinky20J, I have been living with Vasospastic Angina for about a year. From my own perspective, it is not a minor condition. I have gone from leading a normal active life to a life of living with uncertainty, frequent chest pain and reduction in my quality of life. My triggers are cold, emotional upset/stress and lack of sleep. I had a particularly bad episode one day last winter when I experienced a severe angina attack whist outside on a freezing cold day. The chest pain was accompanied with palpitations. It was very frightening. I wear a scarf round my face when going out in the cold and wrap up well.
I need my GTN when out walking. My angina can often come on suddenly at rest.
I have microvascular angina and find it is very difficult to manage sometimes. Its like living with a car that doesn't work properly. And I am in pain much of the time. I find my triggers are overexerting myself. Even if I feel OK at the time I feel it later or the next day. Its like a domino effect. Also lack of sleep or adequate rest. But sometimes I do all the right things, avoiding triggers and it still gets me out of the blue. It's very debilitating.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Been a bit down. 
Feeling a Bit Frightened and Anxious...
feeling let down
Feeling a little guilty!
Feeling a bit scared now
