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British Heart Foundation
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Mva

Hi just a quick one I’ve posted on here before, but don’t seem to be getting anywhere can anyone tell me the symptoms of Mva please. I’m going for another stress test today last one was 2017. I have lots of problems going on. Thank you in advance

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Hi 2stents,

By MVA do you mean microvascular angina? If so then angina like symptoms can be common with this condition which can include tightness or heaviness in the chest, breathlessness and lightheadedness. We have an information sheet on microvascular angina which you can access here (https://www.bhf.org.uk/informationsupport/publications/heart-conditions/medical-information-sheets/microvascular-angina).

I hope the test goes well today,

Lucy

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Hi Lucy

The BHF information leaflet describes MVA in this way

'Microvascular angina is a type of angina that affects

the many small vessels which supply your heart

with blood. It happens when these small blood

vessels cannot provide enough oxygen to the heart

muscle, causing chest pain and other symptoms.

'

It is unhelpful to say 'angina like' as it implies that Microvascular angina is not ' real' or not 'true' angina. Many patients have great difficulty accessing Cardiology care because Microvascular angina is not acknowledged or recognised as a type of angina.

The BHF has done an amazing job by taking advice from a leading BHF researcher into Microvascular Angina and a Patient with a lived experience of the condition when they updated the leaflet last year.

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Yes I have just read the leaflet . It’s helpful thank you

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I commented below. The said prof's official profile says, it's not a heart disease, hence. He still uses syndrome X, too.

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I know but the website says otherwise.

rbht.nhs.uk/our-services/mi...

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It was on his profile page, with his face photo.

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It's not unusual to have ischemic episodes /tissue hypoxia in organs when the disease is active. But, I agree that cardiology still insists on the "not a heart disease". And, Lucy's comment reflects that view.

There are two type of patients, 1) MVD with clear arteries. 2) MVD with patients who had stents/marked blockages. There may be some commonalities between these two but these could be quite different. Unfortunately, those research papers are so high level.

There seems to be less understanding of what hypoxia means to vital organs, until your condition moves onto anoxic state, which means either Cardiac arrest or heart attack.

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I was actually surprised Lucy's comment as it does not reflect what was written the updated BHF MVA leaflet.

The language used was carefully chosen and checked by a patient with a lived experience of the condition and Prof Colin Berry.

The description of Microvascular angina as a type of angina is actually very important rather than the old school angina like.

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Hi Lucy thank you for your reply, I had myocardial perfusion scan yesterday, and would you believe it I didn’t get any pains or lightheaded ness although I was very short of breath.. I have to go back on Monday for the rest test,

All the doctors there said my stents have done really well to last 20 years. I could be on here all day writing everything lol. But I’m trying to keep it short..

So I’ll see what there say on Monday !!

Thanks again Lucy

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Do you mean a cardiac profusion scan?

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For me, it's varying degrees of chest pain, breathlessness, fatigue.

I can be left with a dull ache in my chest at times.

ECG's and the stress test showed nothing, but put a gentle slope in front of me when I'm walking and I'm reaching for the gtn. Very cold weather brings it on too.

MVA for me has been a long battle to get diagnosed, which I'm still fighting. Some doctors support it, some don't.

Luckily, I was put on the right meds at the start because I researched it prior to seeing my (then) doctor after an angiogram. I knew what would help me with it, and I told him so. The only one he didn't agree with was beta blockers, but I've since been put on those too by a cardiologist. My advice to anyone would be, research. (But only on UK sites, stay away from others)

Good luck 👍

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Hi griff. Thank you for your reply

I have been having these symptoms for a few years now. Although I do have 2 stents fitted from 10 & 20 years ago, which was starting to block back in 2011 .. was put on adizam along with my other meds, 10 weeks ago after feeling really ill was put on ranexa hopefully I’ll get some answers on Monday..

Thank you again for your reply and pleased to know you finally got sorted out

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I though I was sorted, till the December appointment with a cardiologist who doesn't believe MVA exists. It's an ongoing struggle to get it recognised, and a long wait (5+ weeks) to see my doctor for her opinion on the cardiologist's view. Don't give up, no matter what they say, it's them who are wrong.

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Can I ask what meds you are on . I am struggling to get the meds right and having all sorts of side effects with monomil

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Hi Copsem.

Bisoprolol 2.5mg

Isosorbide mono 120mg

Nicorandil 20mg

Atorvastatin 10mg

Gtn spray as required

Aspirin 75mg

Lasoprazole 30mg

Ramipril 10mg

Metformin 1,500

Cyanocobalamin 100mg

I've got other issues besides MVA, but I think all have an effect relating to it.

High blood pressure, diabetes and B12 deficiency.

Some meds have been increased since I was first given them, the only ill effects have been headaches for a few days at first, but ok once that wore off.

The other side effect is bad leg cramps with the statin, I leave off them for a week sometimes, then I'm ok again.

The lasoprazole was increased from 15 mg to 30mg when I was given aspirin, as a precaution.

The high blood pressure, diabetes and B12 deficiency were all easily diagnosed, but the MVA, which started 3 years before the rest, still hasn't been, it's still a speculative diagnosis because so many cardiologists dismiss it. Funny how they prescribed the meds for it though..... Just in case

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Even with a definitive test result and my diagnosis confirmed by 4 Professors of Cardiologist in writing, I still encounter Cardiologists who find difficulty in accepting that Vasospastic and Microvascular angina exist.

It is as though we are asking them to believe in unicorns...

Work in progress as they say...

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I don't think I've come across anyone in the medical profession who has had a positive attitude to MVA in 6 years.

As for vasospasm, I'd never heard of it till I read an article on here recently. It perfectly described what I'd been experiencing just a couple of months before Christmas. I've yet to discuss it with my GP. Hopefully, the appointment won't be cancelled again 😯

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Griff-64

I am sorry to hear this.

I was diagnosed nearly 7 years ago and have had quite a journey.

I now have an Admission Plan which is on my local hospital's electronic patient record system and the Head of Cardiology supports its use.

I am treated with IV nitrates and IV morphine when I need to be admitted to hospital.

I am under the joint care of the Cardiology and Pain Management Teams.

I achieved this by raising my concerns about my care and discussions with the Director of Medicine, Head of Cardiology and my Cardiologist and Pain Management Team.

I am now able to give the staff a copy of the BHF information leaflet about MVA and I am looking forward to the update of the information about Vasospastic angina.

I ask everyone to please read my plan and regardless of their personal beliefs about whether myocardial ischaemia is the cause of my pain can they please treat my pain appropriately. I also ask can they please acknowledge that I am an expert patient by experience. To do otherwise is not treating me with respect and dignity nor with compassion or kindness.

All of this is supported by the NHS Constitution which I think I have almost learnt off by heart now.

Don't give up keep going to educate those who care for you to make the path easier for yourself and those that follow.

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Can I ask what is an admission plan ? Should I have one ? Are you under the care of the Brompton ? I am in Guildford and was wondering about the Brompton as they have a world expert there that I saw in the Bhf leaflet

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Hi Copsem,

The latest BHF information leaflet about MVA was written with advice from Prof Colin Berry in Glasgow a BHF funded researcher and an expert patient.

Out of interest which BHF leaflet are you referring to that talks about the Royal Brompton?

bhf.org.uk/informationsuppo...

bhf.org.uk/informationsuppo...

Prof Peter Collins adopted the term MVA after the update of the BHF leaflet in 2017.

I see another BHF funded Cardiologist who is actively researching into Vasospastic and Microvascular dysfunction in London.

I was cared for by Prof Juan Carlos Kaski at St George's until he retired.

Here is Jennifer Waller's story another former patient of Prof Kaski

bhf.org.uk/informationsuppo...

I have an Admission Plan to guide the staff how to care for me as I have spasms in my microvessels and coronary arteries along with neurological symptoms.

I am treated with very high doses of IV GTN and morphine and in the past this has been mismanaged and I experienced a great deal of severe pain which has left its own psychological mark.

Written in the BHF leaflet it suggests that if you do need to be admitted to hospital on regular basis that an Admission Plan is very helpful.

I would suggest anybody with a long term condition requiring frequent hospital stays asks for an Admission Plan. We are as patients experts by experience.

My plan was co written by my Cardiologist, Pain Management Team and myself.

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I think I must have meant Prof Kaski who you say has retired. I am going to ask for a referral to the Brompton. Any recommendations . Someone said Dr Stevenson in a fb group for MVA

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The Royal Brompton has a cardio oncology service

rbhh-specialistcare.co.uk/c...

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Thank you so much . I cried when I read this ! This is where I need to be . Thank you so much . Very very grateful for you help . Rosemary x

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No problem. I am glad I could help.

Please say how you get on.

I feel you have an important story to tell of your experience.

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I will try and get referred straight away. Yes I think my story could be useful as one in 8 women now get breast cancer and it is picked up early by scans which is great then it’s surgery and radiotherapy as standard . Generally all goes well but I have been landed with a potential much more damaging problem with the radiation induced heart disease. They keep saying “ it rarely happens “ nowadays but it happened to me and it doesn’t help when the medical profession are in denial. Thank you for helping me find the right help . You know more than everyone at the NHS St Luke’s Cancer centre !

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Thanks for this . Is it because it’s not easily fixable like a stent so it’s “unattractive “ to the cardiologist?

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I think you're right, I've felt that too, except this last cardiologist I saw before Christmas. He was just arrogant, dismissive, and ignorant.

I've never left a consultation feeling so angry.

One thing is certain though, I'll never be seen by him again. I'd refuse 100%

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Oh dear . Poor you . What a horrible experience

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Generally, this seems to be a trend. This must be what they are told to do.

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I agree. Reading posts on here is a real eye opener.

Because I've lived with MVA for a while, I'm not particularly worried by it normally, I just deal with it. The episodes before Christmas were of concern because I was getting chest pain at rest, some were a 7/10 which is unusual, and the gtn didn't always work.

My doctor always urges me to phone for an ambulance if I get chest pains, I'm begining to think what's the point if an ECG shows nothing and the cardiologists don't believe MVA exists.

I would do it though if I really thought I needed to.

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It’s so frustrating isn’t I’ve been the same go to A&E

Everything comes back ok !!!

I’m at the stage to just ask them to take me off my meds !!

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Just because they can't see it doesn't mean it's not happening.

Do you ask to look at your ECGs ? Last time I was in hospital before discharge I was given a copy of all my ECGs.

Typically MVA patients ECGs show subtle changes and they have small troponin rises. These are considered ' normal ' they just indicate you are not having a heart attack.

Once a very junior doctor told me my ECG was 'normal' I asked them to show me and they then backtracked when I asked about the changes that my Cardiologist has shown me to look for.

Being in pain is not okay.

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The previous ECGs I had in the past since 10 years ago, came back with some abnormalities, too. These were dismissed for reasons they conveniently came up with i.e. I did not press the button when these occurred (I must have been asleep etc!), artefacts for HA around the times I had strokes (and I did not recover well from).

They dismiss things anyway. There was a recent thread, started by a Man, who had HA after he was sent home by Cardio, who picked up the clogged artery but sent him home without any further treatment/action. This is a very black and white incident but doctors would not consider the quality of life, family life, work of patients etc. These can be destroyed so easily, overnight.

I noticed on other Hubs that anything to do with "pain" is often interpreted as women's heightened sense of health anxiety (the Victorian concept of women suffering from hysteria/functional condition without any medical basis).

The "pain syndrome" was then, born. They add "syndrome" at the end, and a new disease is born. "You have an unusually heightened awareness of pain beyond normal. "

When they do not know, they should have said, "I do not know" but they have the doctor's pride. Instead of saying, "that's something I/we do not know and I/we would like to try to help you and work together", they say, "that's not heart disease". It does not make much sense. Small vascular disease causing hypoxia events in cardiac/coronary tissues must be treated as heart disease.

They are all singing from the same hymn book by looking at so many posts by other patients, who had been short-changed by Cardiology, as Griff-64 so accurately commented earlier.

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I could also list the life affirming postive experience of the Cardiology care that I have received.

It has been hard won.

Everyone should perhaps read section 7.2 of the 4th Universal definition of a Myocardial infarction

academic.oup.com/eurheartj/...

I have had the admission from a very experienced interventional Cardiologist respected by his peers that he didn't have any expertise in managing my condition.

He followed my plan trotted off and looked at my angiogram results and acknowledged the cause of my pain was due to myocardial ischaemia.

Through advocating for ourselves we can educate those who care for us. Drip by drip we keep handing over the research articles and then there is a shift.

The BHF has changed its view, the Royal Brompton website has followed. All through the application of research into practice and expert patients by experience acting as advocates.

Nobody will ever be able to stand at the end of my bed again and say my pain is not due to myocardial ischaemia....

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Yes, you're fantastic in your campaign on our behalf. :)

Dr Gupta's video on MVA was a bit of a shock, too, knowing he seems to be such a caring personality. HOW can he tell it's "nothing serious". Maybe, another official letter, politely requesting him to reconsider his subjective/unscientific view, might be useful. It's a shame that his video is very popular and it would have been useful to have him "on our side". :)

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Thank you for your kind words.

Perhaps you should write to Dr Sanjay Gupta too?

I have sent him the research evidence but he has chosen to ignore it.

I think another voice may help.

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My brother had chest pains I called a ambulance they said ecg looked ok took him to hospital sent him home nothing to worry about day and half later he had heart attack.

If there’s changes on ecg then they should tell you, I bet you was so annoyed

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It’s so strange why are they in denial? I have heart damage from radiotherapy and there is a lot of denial about that too . Not sure if it’s fear of law suits or the fear that women may opt out of radiotherapy... so wish I had ..

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Yes women and heart disease!

blog.bhf.org.uk/not-my-prob...

bhf.org.uk/informationsuppo...

bhf.org.uk/what-we-do/news-...

This research was carried out by Prof Chris Gale in Leeds.

I am so sorry you are in the position you are. The treatment for your cancer has lead to another life changing condition .

More knowledge is needed so that women prior to radiotherapy are given evidence based advice to help them make decisions about their cancer treatment.

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Yes thank you so much for the links . I know my problems stem from radiotherapy to my chest as I crashed immediately afterwards with heart issuses .It is quite well documented in the USA but here there is total denial that it happens.

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you may have signed a consent form, which may have included a clause, "in the unlikely event..." You may not have been aware of the risks, or you have never been made aware of them, but they know.

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Yes understand

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Do sorry you are going through this you must be so fed up of it all x

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Crikey thank you . That’s quite a list . I am just struggling with one tablet monomil at 30mg so I am a complete beginner!!

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I go back on Monday for the rest test, so hopefully they will be able to tell me something, I will let you all know what is said

Thanks for all the comments on this post 👍

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I hope your test goes well.

MVA can be very difficult to diagnose using conventional tests that are designed to look for blockages rather blood vessels not dilating or constricting.

I was once told this by a very experienced interventional cardiologist..he had the honesty to admit he knew very little about MVA Vasospastic angina and said most Cardiologists find it challenging not to know, and even more uncomfortable when the expert in the room is the patient !

I thanked him for his honesty and his care when I met him later.

Some Cardiologists solve this problem by denying the patient has a problem and discharging them.

If you have pain it should be treated appropriately. Whilst MVA seems to affect women more commonly, I suspect it is much more common in men than thought.

The men I have been in contact with can have just as much a challenge getting MVA or vasospastic angina properly recognised and treated.

Take the BHF information leaflets with you when you go to your appointment they are throughly researched and evidenced based.

Ask the Cardiologist if they are willing to work with you to find a solution to treating your symptoms if they say this isn't possible ask to be referred to another Cardiologist.

Good luck!

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Thank you for all your information, it's like everyone says, you feel like no one believes you.. I keep getting told different things, 2011 angiogram then booked in for angioplasty brought back to ward told I had 50-70% blockage in one stent, put on adizam, was ok for a while then symptons started again, been backwards and forwards for the last few years, 2017 another angiogram told I had 50% blockage in one stent and 50% blockage underneath the other stent and small veins going into spasm, so was put on the patch, which did help ,then because I had a bad turn go took me off patch and put me on ranexa..I ask for 2nd opinion then was told both stents 50% blockage,so I questioned why did you tell me in 2011 I was 50-70% blocked??

Reply was I probably over estimated!!

Phone call just before Xmas off cardiologist blood running ok through stents but sluggish in small veins, hence these that test..

I really don't now who to believe anymore, so sorry for long post

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These are all their tactics. Deny, deny, and deny again, and long enough until a patient starts second guessing, "oh you got no problem here. " then, secrecy. "Your blockage does not look too bad as I said, so. " ("this is not based on facts but I'm telling you").

The said prof's official profile is still using Syndrome X, and it says, it's not a heart disease.

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I absolutely share your frustration.

I will go to the grave with this experience.

Cardiologist stood at the end of my bed says

'Mrs ...... you can't possibly be having cardiac chest pain your coronary arteries are clear'

He turned my IV nitrates off. Then watched me have an enormous episode of severe chest pain due I now know was a coronary artery spasm.

I was not allowed to go home until I had a cardiac MRI because they thought my heart was damaged.....

Keep the faith. You are the expert on your body. I thought I was going crazy because nobody seemed to believe me.

I have given birth 3 times and the pain of my coronary spasms feels like being in labour in my heart.

Whenever a patients pain is not acknowledged or reliably treated in an timely and appropriate manner they are not being treated with respect and dignity nor with compassion or kindness.

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I'd been taking one for several years before the onset of MVA, it seems to have crept up on me over the last 6 years. But mine is just a drop in the ocean compared to my partner.

She takes 45 a day, not counting the odd times she has a week or two on antibiotics and steroids, then it can rise by another 8 a day.

I count myself lucky

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