MICRO VASCULAR DISEASE: Hi I was... - British Heart Fou...

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MICRO VASCULAR DISEASE

Impp profile image
Impp
27 Replies

Hi I was diagnosed with this in 2017 after an angiogram me. Currently on medication which keeps me stable apart from angina a couple of times a month. Does anyone else have this diagnosis? Most doctors in A and E which I had to go to as an emergency do not appear to understand it.

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Impp profile image
Impp
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27 Replies
sandybrown profile image
sandybrown

There are a lot of information on the subject of "MICRO VASCULAR DISEASE".

How is your general health, blood glucose, blood pressure and blood cholesterol before you went for the check up? May be you need to ask your GP for a full explanation? If you are not on a life style change, going on it may help.

Impp profile image
Impp in reply to sandybrown

General health is good. I developed type 2 diabetes around the same time and have had high blood pressure for 30 years but under control. My lifestyle changed about four years ago and I am not overweight. I was told that diabetes and high blood pressure are linked to this. I just can not find anyone else who has this, and it would be nice to talk to someone. My GP is good and so is the specialist who diagnosed me but he has signed me off . I think I am cross because a and e did not accept I had this .

Milkfairy profile image
MilkfairyHeart Star

Hi Impp

Here' s some information about Microvascular angina a poorly understood and recognised condition.

It is a challenge to live with too.

I live with microvascular angina and coronary artery spasms. I have a written Admission Plan which is on my local hospital's electronic patient record system to guide the staff how to care for me.

Perhaps take the information below to your GP and ask to be referred back to a Cardiologist who is willing to work with you to plan your care appropriately.

bhf.org.uk/informationsuppo...

bhf.org.uk/informationsuppo...

heart.bmj.com/content/early...

Impp profile image
Impp in reply to Milkfairy

Hi thanks so much for that - particularly the bit about poorly understood! I am not a stress person and mine can happen out of the blue in any situation so it is a bit weird. I live in Chichester and it was sheer luck I got diagnosed but it is obvious apart from the consultant who I saw, that it is poorly understood. How often do you get the spasms and is yours affected by anything in particular? I have had to get the paramedics out once when my arm and throat were affected but got kicked out of A+E four hours later being told it was not my heart! Trouble is because I have multi problems which I manage myself they all think I can cope. Our coronary dept is really busy so getting an appointment will be ages. They discharged me to my GPS care from then on. However just knowing there are other people with it is hugely helpful and I will be much firmer in future.

dunestar profile image
dunestar

Hello Impp. I was diagnosed with microvascular angina at the beginning of Oct. Route to diagnosis was straightforward. I live 10 mins drive from Harefield hospital, so all the diagnostic tests were done there.

Had a struggle since then with the medication. Glad to hear you are in a stable state. Would you mind me asking what meds you take for your angina?

I take Bisoprolol 2.5 mg, Atorvastatin 40mg, and Ramipril 2.5mg, all prescribed after my stress echo showed substantial ischaemia. Isosorbide mononitrate 30mg was added after my angiogram. I've recently started ranolazine (Ranexa) after seeing a specialist in microvascular angina but I don't think it agrees with me. I woke twice in the night with lots of sweating and raised pulse. When I got up this morning I felt very unwell and had to go to the gp as an emergency appointment. He thought it might be the Ranexa and said the safe thing might be to stop it at least for the time being. My difficulty is that I don't get any chest pain, just breathlessness on exertion (don't get me wrong - I don't want the chest pain but it's hard to know at times what is going on). I don't know whether the angina is becoming unstable or what. Plus I have no idea whether I get the spasms Milkfairy mentions.

Milkfairy profile image
MilkfairyHeart Star in reply to dunestar

Hi Dunestar

I feel pain when my microvessels and coronary arteries go into spasm also breathlessness and light headed, my heart rate increases and I am very very tired. All of this happens at rest I can exercise.

I have every sympathy with you about the breathlessness I find that more difficult sometimes than the pain!

You can experience ' silent ischaemia ' When you feel no pain but have other symptoms.

I couldn't tolerate Ranexa either I had palpitations and raised pulse in the night too.

dunestar profile image
dunestar in reply to Milkfairy

Thanks so much Milkfairy. It's so helpful to know that I'm not alone in not getting along with Ranexa. Your description of the spasms sounds familiar as well. I think I'll have to wait until the Ranexa clears my system to take stock of what's going on.

Twobells profile image
Twobells

I have this condition, This is the smaller blood vessels are broken down and become weak and blocked over many years and mainly caused by diabetes 1 & 2. This disease affects your whole circulation, heart, kidneys, eyes and feet. If it not monitored or picked up it will cause problems, it is often diagnosed as angina, but this is the early signs that there are major changes going on inside the heart. Symptoms are breathless on exhertion. If you have diabetes you risk are hugely increased. Usually you start on meds as a treatment, but for me Ì ended up having Heart atteck, folloewd by triple bypass. Still have issues, but doing well. If you are concerned don't ignore your symptoms.

Hope this helps

Impp profile image
Impp in reply to Twobells

Thank you. I think that I am not being followed up enough. My GP said he was now responsible for my heart condition until he could not deal with it anymore. I want more input about how I can stop it getting worse. So all the comments are really welcome.

in reply to Twobells

It's a very useful post. Thank you for posting this.

You clearly know what "this" condition is.

The hardest part of this is to gain access to the correct diagnostic test(s) relevant to individual patients and many years go by without getting anywhere.

Twobells profile image
Twobells

The only thing ismeds and exercise. I have a GTN spray which I use before any physical activity. This seemsto help me, but I do struggle and then I just rest.

Impp profile image
Impp in reply to Twobells

I have the spray too and find it helps me. I am very active and do things in the community. My angina pops in for no reason I can connect to. I don’t get stressed either so it is weird

Twobells profile image
Twobells

Just a thought have you been reffered for cardiac rehab. This can help you get started on healthy eating and exercise programme ask GP for it.

Impp profile image
Impp in reply to Twobells

Have not been offered anything! We grow our own veg, we eat really healthily and avoid sugar and don’t eat processed foods. When they checked my food intake they said it was perfect.

Twobells profile image
Twobells

Its also about living with a heart problem.

Impp profile image
Impp in reply to Twobells

Yes it is and frankly not many people understand that. If you have surgery or a heart attack it is more understood but when you are apparently living a normal life with no outward signs then how can you have a heart condition! I just try to get on with life but of course it is always there in the background what could happen

Rob6868 profile image
Rob6868

Please can you tell me how they diagnosed you and came to that conclusion?

I've long thought I'm suffering from this but feel I'm banging my head against the wall..

dunestar profile image
dunestar in reply to Rob6868

I had a stress echo which showed fairly global ischaemia, so not enough blood was getting to where it needed to go. In my case this shows up as breathlessness rather than typical angina pain. At that stage the doctors were thinking that my main heart arteries were blocked. I was advised to take the lift rather than walk up the stairs. When a doctor says that you know something is wrong.

However when I had the angiogram my main heart arteries were in reasonable shape. So the diagnosis comes about by concluding if the ischaemia shown on the stress echo is not caused by the main blood vessels then it must be the smaller blood vessels. The resolution of the pictures they take during the angiogram is not sufficiently high to see the smaller vessels directly, so it's a diagnosis by inference. I do believe there are tests which can show up what is happening directly with the microvessels and others may be able to comment on this but in my case they were not felt to be necessary.

Milkfairy profile image
MilkfairyHeart Star in reply to dunestar

The causes of Microvascular angina are varied. Sometimes it's because the very small blood vessels do not dilate properly other times they contrict.

My coronary vasospasms causing Microvascular angina and Coronary artery spasm were confirmed by an angiogram with acytelcholine only available in a few centres in the UK.

Milkfairy profile image
MilkfairyHeart Star

Diabetes absolutely does have an impact on all the organs of our body.

Those of us living with coronary vasospastic angina a functional disorder of our blood vessels can not be fixed by stents or surgery.

My fasting blood sugar and HbA1c are both normal, BMI 21, waist less than 30 inches, I eat a Mediterranean diet, I exercise but I am still at an increased risk of a heart attack, stroke or heart function problems without a blockage in sight!

Non obstructive coronary heart disease leading to Myocardial infarction non obstructive coronary arteries- MINOCA.

in reply to Milkfairy

The medical community should, I feel, stop using the term such as "FUNCTIONAL" as in Functional neurology = psychogenic / Functional GI issues = IBS with no medically proven, organic cause. The microvascular system is where the organic cause, hence I do not see any point whatsoever to call it "functional". The use of this term will continue to allow undermining this serious ORGANIC VASCULAR disease. Using the "F" word, this condition will continue to be regarded as a mere "fringe" condition which the mainstream cardiology would not officially recognise.

Milkfairy profile image
MilkfairyHeart Star in reply to

Hi Autumnsonnet,

I am interested in your feeling about the word function.

Until I had my angiogram with acytelcholine which showed ST elevations and depressions along with an altered blood flow through my all my coronary blood vessels it had been suggested that I perpetuated my pain in my mind as there was no physical cause of my pain.....

I share your dislike of the term psychogenic which was being implied.

Cardiologists tend to use the term Coronary Microvascular dysfunction to describe when the smooth muscle of a blood vessels does not respond in the usual way. There are many many different causes of Microvascular angina all need to be appropriately identified so the correct treatment can be tailored to the individual.

The lining of our blood vessels the endothelium is very important. It can be damaged by diabetes, high blood pressure, pollution, inflammatory and autoimmune disorders, epigenetics etc. Some people develop obstructive coronary heart disease others non obstructive coronary artery disease.

There is not a system in the body that doesn't required a smooth consistent supply of blood.

in reply to Milkfairy

I have seen someone, mentioning this book.

"The research community has neglected conditions that disproportionately affect women and paid little attention to biological differences between the sexes in everything from drug metabolism to disease risk factors—even the symptoms of a heart attack. Meanwhile, a long history of viewing women as especially prone to "hysteria" reverberates to the present day, leaving women battling against a stereotype that they're hypochondriacs whose ailments are likely to be "all in their heads."

mayadusenbery.com/book

Milkfairy profile image
MilkfairyHeart Star in reply to

I agree!

Too few Cardiologists are women.

The BHF have just appointed a woman as an assistant medical director.

Women are different and Prof Chris Gale's research showed women were less likely to get the correct diagnosis of a heart attack and treatment leading to a higher mortality after a heart attack.

leeds.ac.uk/news/article/42...

Thanks for the book link.

I believe they also use another substance as well as acetylcholine, unsure as to which one would be the best. Useful to know these microvascular NHS centres up and down the UK (unless there's a list, provided by the BHF already). I recently found one NHS centre/consultant in the North and a few days later, I found out that the consultant concerned no longer worked on the NHS.

Impp profile image
Impp

I had an episode in September 2016 when I had a sharp pain in my chest and for an hour could not breathe properly . Being in Egypt at the time I could not do much about it but saw Gp a few weeks later who referred me as urgent and I saw the consultant two weeks later. She was obviously concerned and said angiogramme ASAP. When I said why wasn’t I having stress tests etc she said I was too far down the line to bother with that. I got my appointment and the consultant told me if he could not find anything then it would be a problem with my osophagus (can’t spell) as it mimics heart problems. The angiogramme took place and he told me my main arteries were as clean as a whistle and I was amazed given the circumstance BUT as it continued ( and I didn’t know what he was doing) the dye entered the smaller vessels I yelped with pain. He was on it immediately asking if that was the pain I got normally. It was and he said I think I know what’s wrong and came and talked to me later. He told me the link to high blood pressure and diabetes with micro vascular disease and said it was little known - I had been taken to casualty by Paramedics five days after the initial consultation with severe pain and because the blood tests were normal there I was told nothing war wrong!

Milkfairy profile image
MilkfairyHeart Star

Experiencing pain when they inject the dye during an angiogram is very common with individuals with Microvascular dysfunction. I also had chest pain during my first angiogram which was ignored despite bleating!

I was told I couldn't possibly be having cardiac chest pain because my coronary arteries were clear!

The Cardiology world needs to be educated about this condition.

The BHF updated their information about MVA last year from pressure from 2 patients.

If we feel we are not receiving the care we need we should contact the BHF and tell them so.

Prof Colin Berry wrote that this condition is stigmatized by being female, psychology and being overweight leading to therapeutic nihilism by Cardiologists!

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