Microvascular Angina

[AndyPierce]

Hello. I was diagnosed with MVA last May by a sympathetic cardiologist but in reality had it since 2007. I’m on a cocktail of ramipril, digitalizm, long lasting nitrates and statins. Lately my symptoms seem to have got worse, to the point that I’m frightened to go out the house in case I pass out. My GP is working on my high BP, but because they know very little about MVA I get the impression that they are not taking it very seriously, while my Cardiologist, who understands the condition will not bring my appointment forward. I’m really tired of being in pain and confined to the house. Can anyone offer some advice on treatment options, and how I can get my healthcare providers to listen? Thanks Andy

[Healthyheart1]

Hi Andy, hopefully someone will be along soon to give you some advice. I've got coronary artery spasms and I think I have micro vascular angina. The pain I feel is very real. I have been diagnosed just over 2 years. I don't have high blood pressure I dont have atherosclerosis, when I had an angiogram my arteries went into spasm it was very painful, it took 2 weeks for my arm to be feeling ok. I have no problems with my arm now. The weather and stress affect me a lot. Hopefully someone will be along soon with some help. Just know your not alone on this forum. Sheena

[Hidden]

Hi Andy,

I have MVA and like you struggle with the cold weather. Unfortunately it’s a difficult condition to treat and for me at least most of the drugs didn’t have much effect, I’m just on GTN spray and GTN patches now. My best advice is to keep warm, wear gloves, scarf and hat. I find heat works best for me, so sometimes I stuck a heat patch under my t-shirt and use a microwaveable heat pouch to relieve the pain. I find if my hands get too cold I can be in pain for days!

Hopefully your cardiologist can try some different treatments with you and find something that helps!

P.S. I’m lucky enough to have a very understanding GP who helps with drug prescriptions etc but there is very little she can do, unfortunately you have to wait to see your cardiologist!

[Sunshinebrew]

Hello, sorry you are not well at the moment. I have been diagnosed with MVA following a failure to get better after an angioplasty and stents 2 years ago, and I'm still trying to manage and cope with debilitating symptoms. My GP is supportive but doesn't know much about the condition, she said that I am the only patient she has come across with it. My symptoms are breathlessness fatigue and chest pain which comes on randomly at rest and feels very tight all around my chest and back between my shoulder blades sometimes I feel nausea with it. There are times when I feel ok have more energy and have no pain too, I am keeping a diary to see if there is any pattern or triggers which make me worse or better. I am taking long acting nitrates, amlodopine, nebivolol, aspirin and statins and have GTN spray. I have found it difficult to manage my symptoms at times and have been to A and E 3 times in the last 2 years in between cardiology appointments to get my symptoms under control and rule out anything life threatening. I listen to my body do more when I feel ok and rest when I don't , I try to be as active as possible without overdoing it, I use meditation and mindfulness to help me to cope mentally and see my GP regularly, and last but not least I have read all the information available on the condition and get advice and support from others via this forum, which I have found very helpful.

[Milkfairy Heart Star]

Hi AndyPierce

Welcome to the forum

Welcome to the bizarre world of living with non obstructive coronary artery disease!

Sometimes we feel like we are an abandoned tribe of Cardiology patients. Unicorns in fairyland.

Microvascular and vasospastic angina ( the term now used to describe coronary artery spasms) are poorly understood and often dismissed by Cardiologists as there is no definitive test widely available.

It is very positive that you have a Cardiologist who recognises the condition.

It is a case of trial and error finding the right combinations of medication that works well for you.

Common triggers are the cold and you have had some great advice already from others.

I also practice Mindfulness meditation, Tai Chi and yoga.

I exercise as much as I can and eat a well balanced diet.

However there is a hard truth for those of us who live with MVA and Vasospastic angina. It is challenging to live with and treat.

That is why Sunshinebrew's advice is important.

I have had to learn stratergies to help maintain my mental resilience to live with chronic pain that on occasions the NHS cannot provide the care I require.

I did attend a very good pain management programme which again teaches you techniques to help to live with pain.

Again they involve CBT, Mindfulness mediatation, learning to pace yourself and learning that you are the expert about listening to your body's needs

I also see a Cardiac Psychologist to help me manage the ' fall out' from the less than ideal care I have recieved and my pain.

I have just returned home from a 10 day stay in hospital where because no bed was available in CCU I ended up in worse pain because the nurses could could not provide the level of care I need. I need IV GTN and morphine and needed a level of observations and care not possible on an open ward.

This has been openly acknowledged by the Director of Medicine along with an apology.

I have lived with Microvascular and Vasospastic angina for 7 years. Mine was confirmed by documented evidence and tests. I am also severely effected so mine is more of a challenge to treat.

The BHF have produced the following information about MVA and Vasospastic angina.

bhf.org.uk/informationsuppo...

bhf.org.uk/informationsuppo...

bhf.org.uk/informationsuppo...

It is not all doom and gloom it is possible to live as well as possible with this condition.

There is a growing awareness of the condition.

More research is taking place and even being incorporated into important guidelines and recommended practice.

[dunestar]

Hi Andy. Sorry you're not feeling well. You could educate your GP on the condition by giving him or her one of the BHF leaflets. This may help them to realise MVA is not a benign condition and they may take you more seriously. But if they don't feel confident they know anything about the condition it's unlikely they will change the meds the consultant has prescribed. If your wait for the consultant is a long one they may be prepared to ask for the appointment to be brought forward though as your condition has changed.

With MVA it's a question of tweaking the meds to get the right combination to help you best. But it's certainly a trial if you have to wait a long time between consultant appointments. Does he or she know there has been a change in your condition?

In the meantime lots of advice from others on how they manage their condition. For me cold is definitely a factor as the cold constricts your blood vessels. Things are particularly difficult if there's a cold wind. If you do go out a scarf around your face can help. Also stress. And anxiety can make any heart condition a whole lot worse.

[AndyPierce]

Thanks everyone for such good advice. Stress and colder weather seems to do it for me as well. I’ll look into your suggestions, they’re good ideas. I’ve tried educating my GP with materials from BHF but don’t seem that interested. I think I’ll look into changing surgery. I’ve spoken to my cardiologist’s secretary and he doesn’t want to bring my appointment forward from next month. I have asked if he would mind my contacting Prof Colin Berry directly who he consults with. Just waiting to see what happens. It’s very frustrating when you feel like you are doing all the legwork. It really helps to hear from you all and to not feel so isolated.

[JonathanH]

Hello Andy,

I am sorry that you are having a very rough time. You have already received some good advice.

Different medication suits different people. For what it's worth, I have found a combination of diltiazem and amlodipine helpful.

More helpful by far to me, though, has been external counterpulsation (ECP). It has to a considerable extent reversed my disease and taken away the great distress that I previously suffered. I can expand on my experiences, if you wish. Unfortunately, ECP will be extraordinarily difficult to obtain on the NHS, though there is I believe a small NHS centre in Bradford, but you would probably be able to obtain (expensive) private treatment under medical insurance, if you should have it. Apart from the immense difficulties of cost, a huge, huge problem with ECP for many people is time: a standard ECP course is 35 hours at a maximum of 2 hours per day, i.e. a minimum of 18 working days - almost a month. On the plus side, the treatment is non-invasive and non-traumatic; the worst side-effects I suffered were some trivial skin lesions and on one or two days tachycardia that interrupted treatment.

ECP is not NICE approved and there is virtually no research specifically relating to its treatment of MVA. I do know that it doesn't work for everyone but anecdotally most MVA patients respond.

I greatly respect Milkfairy for her knowledge of MVA and her commitment to bettering the lot of MVA patients but she and I have divergent views on ECP. It has been fantastic for me and the costs of undergoing the treatment have to be offset against the cost of not doing so: my private treatment has released NHS ambulance and hospital resources for others.

I could weep with frustration that there are people in this country who suffer terribly from MVA without anything approaching effective treatment, when there exists a treatment that would be life-transforming for many.

Kind regards

Jonathan