MICRO VASCULAR ANGINA

[Red18]

Hellooooo. Been to see the cardiologist today. Has ruled out typical stable angina as I can walk/exercise with no chest pain and no breathlessness. He is sending me for another test . Can anybody enlighten me with the knowledge of what I might be having done?? Many thanks .Hope you all having a great day.

[MichaelJH Heart Star]

Hi! I do not know much about MVA but if you go to the BHF website there is quite a bit of information (it is also known as "Syndrome X". My understanding is that they use specialist MRI techniques and sometimes perform an angiogram with incredibly small wires.

[Red18 in reply to MichaelJH]

Hi Michael. Will have a look. Many thanks. Have a good day!

[Milkfairy Heart Star in reply to MichaelJH]

Oh Michael Cardiac Syndrome X is so old school.....it is a term that the BHF stopped using 2 years ago at the request of patients as it so unhelpful.

Here's my understanding of Microvascular and vasospastic angina as someone with an over 6 years lived experience of both conditions.

Some types of Microvascular angina are thought to be caused by an inability of blood vessels to dilate and this type can be diagnosed using newer MRIs and seeing a reduction in the coronary flow reserve by looking at how the blood flows through all the blood vessels of the heart during an angiogram.

The ' gold' standard test to diagnose vasospastic and microvascular is an angiogram with acetylcholine. When acetylcholine is injected into normal blood vessels they should dilate. If they constrict or go into spasm then a diagnosis of Microvascular and vasospastic angina can be made.

Unfortunately both conditions are poorly recognised with Cardiologists having very little knowledge or expertise in treating these types of angina.

Only a few places in the UK offer angiogram with acetylcholine .

The BHF has done a great deal to inform both patients, the public and clinicians about MVA and VSA.

Most people live with either MVA or VSA some poor sods like me both! In fact the blood vessels in my brain are affected too.

I look forward to the day when Cardiologists can see beyond the blockages and start recognising that when blood vessels don't function properly it causes a lot of bother!

bhf.org.uk/informationsuppo...

bhf.org.uk/informationsuppo...

Prof Colin Berry is a BHF funded researcher and this is a summary of his CorMicA research published last autumn.

mdedge.com/chestphysician/a...

[Red18 in reply to Milkfairy]

Hi Milkfairy. Thankyou so very much for replying. Will take a look at the websites you have posted. Wishing yiu a great day!

[Oviston in reply to Milkfairy]

It sucks having these conditions. How many times a day do you have to use your Gtn spray? I hate the headaches that go with it.

[Wonderful19 in reply to Milkfairy]

May I ask you how it affects your brain too? Thank you!

[Milkfairy Heart Star]

A good Cardiologist who listens well to their patients can diagnose MVA or VSA. Unfortunately too many treat by results and not the individual patient in front of them.

The difficulty is the treatment recommended is different depending on the underlying cause.

It can take some time finding the best combination of medications to work best. We need treatment tailored to each of us.

There is no standard diagnosis or treatment pathways for patients with MVA and VSA.

That makes some Cardiologists feel very uncomfortable.

I have had an angiogram with acetylcholine and I agree it is not for the fainted hearted.

I choose to have it done as I wanted to know why I had my pain and I shove the results along with my Admission plan under the noses of the Cardiologists who are responsible for my care when I need to be admitted.

Their attitude changes instantly, I am no longer a crazy demanding neurotic women having a panic attack.

They acknowledgement my myocardial ischaemia with clear coronary arteries...and then usually follow my plan.

[Manhattan1 in reply to Milkfairy]

i must have a really good Cardiologist.. he didn’t do any tests either.. i believe he looked at info in my file.. had a chat with me .. listened as i told him my symptoms.. then he drew a diagram and told me i had MVA!.. looks like i won a watch when i was asked to attend this particular Cardiologist’s clinic

[Red18 in reply to Manhattan1]

Morning Manhattan. So pleased for you. Can I ask how old you are? I'm 53. How are you feeling on your new meds?

[Manhattan1 in reply to Red18]

hi Red.. saw him just under2 years ago.. he prescribed Ivabradine.. Isorobide and Tildiem .. they seem to be working well so far.. definitely reduced the amount of pain i have when walking.. still a bit of a problem going uphill.. i’m 64 with various health problems .. ckd stage 3.. high bp.. type 2 diabetes..and asthma

[Red18 in reply to Manhattan1]

You did well to get a really good cardiologist. Wishing you well. Have a great day!

[Alessa69 in reply to Manhattan1]

Wow! You did well to get such a clever , caring Cardiologist. Great result!

[Hidden]

I think it is a good question.

There are different opinions on this test as far as I am aware.

Dr dS at Royal Brompton had a strong opinion against this particular "dangerous test" (he also used "not Cardiac" phrase, too, that I complained) but when I spoke to another Cardiologist, he sounded far more positive. It is very curious to see different opinions within the same general Cardiology team at RBH. I later found out that Dr dS was running an angina service which was a bit of surprise to me. He seems to be far more interested in orthodox angina. However, reading what other patients are commenting as to what their Cardiologists said on this forum helped me gaining insights, extremely useful for my recent visit at Cardiology.

I see Syndrome X is still used on the hospital website. When I first noticed Syndrome X, it was roughly 12 years ago. Things had moved on since. I'm sure things will continue to move on so long as patients continue to encourage the improvement in Cardiology service.

I reckon it is an autoimmune disease, and it is likely they already know but they would not want to deal with the vascular inflammatory aspects, I gather.

health.usnews.com/health-ca...

[Milkfairy Heart Star in reply to Hidden]

The Royal Brompton updated their website last year they use the term Microvascular angina. The term CSX is slowly being dropped but reference will still be made to it for a while yet.

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

rbht.nhs.uk/specialists/pro...

The researchers who are actively involved in researching into this area of Cardiology no longer use the term CSX and are using the term MVA as well as Vasospastic angina instead of Coronary artery spasms/ Printzmetal / variant angina .

The BHF adopted the term Microvascular angina 2 years ago and have just adopted the term Vasospastic angina.

As someone else stated you sometimes have to kiss a few frogs to find a Cardiolgist you can work with.

MVA and VSA are very complex conditions with probably a variety of different causes.

Let's hope the continuing research begins to unravel the mystery and improves diagnosis and treatment in the future.

[Hidden in reply to Hidden]

Hi autumnsonnet,

My vasospastic angina is certainly secondary to my underlying rare, auto immune disease but I don’t think that’s the case for every patient. Certainly the Rheumatology world are becoming more aware that inflammation can cause both macro and micro vessel heart disease.

The question I would like answered is does the underlying mechanism count when looking at treatment? Does micro vessel Disease caused by inflammation respond to cardiac meds in a different way to those with a mix of macro and micro vessel disease etc.

The best medication for me so far has been nicorandil, it works in a different way from isosorbide but the end result in the vessels is the same. I suspect different pathways are implicated in each patient.

[Milkfairy Heart Star in reply to Hidden]

Good points well made Tynemouth.

I personally feel we all have our own version of either MVA or VSA.

For some it could be genetic, inflammation, a vasomotion problem with the smooth muscle of the blood vessels just like other disorders of smooth muscles causing pain in the bladder, bile gut, intestines ureters and womb.

We need bespoke treatment which can only be possible from understanding what's going on in our bodies.

I wouldn't be surprised if 5 maybe more underlying causes will be found all requiring different treatment.

This requires a very skilled Cardiologist to recognise and manage.

Most of the anti anginal drugs used have not been formally tested for the treatment of MVA and VSA.

Nor have they been tested specifically on women.

[Red18 in reply to Milkfairy]

Hi Milkfairy.

I think I am having a MRI Scan with s due??

[Milkfairy Heart Star in reply to Red18]

Hi Red18

Here's some information about MRIs

bhf.org.uk/informationsuppo...

The hospital should send you a letter with instructions how to prepare for the test.

Also you can always ring the BHF helpline and talk to one of the Cardiac nurses they are always helpful.

0300 330 3311

[Hidden in reply to Milkfairy]

Lots of work to be done, that’s for sure.

What interests me is who’s going to fund it and can we ensure that patients are involved meaningfully in the process? From identifying the research question, advising on Patient Reported Outcome measures that are actually of interest to patients right through to dissemination of results in accessible language. Patient insight and involvement is crucial so that the correct research questions are being asked, we shouldn’t fund without meaningful PPI in place.

[Milkfairy Heart Star in reply to Hidden]

Well I feel we are very much on the same page on this issue!

[Hidden in reply to Milkfairy]

I feel that in my recent visit at RBH, they are forced to recognise the importance of this condition and they would need to take the patients seriously. They could say anything at clinic but the other consultant I saw of late was much more open-minded as opposed to "It's no Cardiac, sweetheart" attitude I experienced prior. Next time, it would be someone else/another consultant, I'm sure. But all the other Cardiologists all seemed nice enough. My Neurology professor also thought that his letter (one from the Cardiologist I saw before) was very dismissive of my concern of a very longstanding nature (12 years to be precise). He was very bright but wasn't open-minded. He seemed to have read up on autoimmune conditions but what bothered me most was that he was dismissive of my previous strokes. "oh, you had strokes, yeah? So now, tell me what symptoms you had then" whilst giggling. Did not like the attitude at all. But I digress.

It is likely that MF's persistent hardwork had finally PAID OFF!

Personally, I'm not too bothered by what it's called. I'm only beginning to learn as to why patients dislike the name "SX". I had no idea. The professor (?) at RB called it "non-Cardiac" on his web page on RBH. I have not checked his page, recently, not that I'm bothered to find out (sorry, it's extreme fatigue).

I had another ECG, I'm getting a copy without fail. I have no trust in them.

Of course, we all have our own version(s) of this as much as we are different individuals. Mainstream medicine was never interested in "disease process" how these diseases come about and how to prevent it from getting worse. After all these years, nobody knows why Raynaud's happens. The closest I could think of endotoxin and autoimmune reaction that my previous immuno-neurologist explained to me.

A lot has been found in autoimmune studies. It all seems to begin with chronic infections (viral/bacteria) that the heart appears to be infected by (gum disease). Of course, it's a lot more complex than that. Stress is another one. I'm sure there are a lot more. I wish I had a Cardiologist on the NHS, who understands the rheumatic Cardiac conditions who can help educate patients.

Good luck, Red. Please keep us posted.

[Milkfairy Heart Star in reply to Hidden]

Interesting....

I have heard some very positive comments about the RBH Oncology Cardiologists who specialise in heart failure and MVA as a result of cancer treatment.

There is a growing awareness how chemotherapy and radiotherapy can lead to microvascular dysfunction.

Some chemotherapy drugs cause vasospasms.

Then there is the NHS politics there is a discussion about the future of the Royal Brompton Hospital. The plan is to sell of the site and move all the services to Kings and St Thomas's......

The Medical school at Kings College is undertaking some very innovative research.

[Red18 in reply to Hidden]

Hi. Thanks for replying to post. My pain is basically a pressure across my throat and sometimes a indigestion type pain in middle of chest. Nothing while exercising. Can come on with the cold or after I've eaten a meal. Don't get the discomfort everyday. Been to York and been fine. No symptoms whatsoever. That was for 5 days. Come home today came on again before took GTN spray but pain back in throat??? Consultant today did mention gerd??

[Alessa69 in reply to Hidden]

Would love to know which “Open minded” Consultant you saw at RBH. Please do PM if possible? I have been seeing the same person there ( covered by my insurance) since ‘98, it’s been a long journey, I had all symptom of MVA , which on one occasion sent me blue light to A&E via a GP appt.locally. I did always feel that my EP Cardiologist thought that I was imagining my symptoms! 2 angiograms, 3 Thallium scans etc ended up with diagnosis of PAF post EP studies for SVT , they had to re-start me 4 times! It’s sometimes hard to get people to actually listen to what you are telling them.......

[Hidden in reply to Alessa69]

It was only a consultant registrar (with all the qualifications), working under Dr dS (whom I do not recommend at all; he's also openly anti-acetylcholine test). I don't mean to disappoint you, though. I did not take his name. What they say and do may not be the same. At least, they seem to have some decent scanners. Gosh. Your case sounds extremely serious, and you're extremely well-investigated. I am under "General Cardiology" nothing special, however, I also have pulmonary issues that seem to go together. I was previously discharged with abnormal results at RBH which "reassured me strongly that all is well and told me to have a happy and active life!" sending me off (discharged). I was too naive to doubt what I was told by the Cardiologist, who must have seen the abnormal results. How could they lie?

The hospital seems quite rubbish unless you fall into their certain "type" of patients they favour e.g. clogged arteries (quick diagnosis and get on with stenting/or bypass). As you know that they also have Professor, who deals with "SX" but I never heard of his reputation amongst patients.

[Flowers9 in reply to Hidden]

Hi i have just been diagnosed with Raynards and cardilogust thjbknmy chest oain is non cariac im wonderibg whether i have vasospastic angina or mva. I have really bad purple mottled skin over my whole bodycespecially bad when cold or stressed. If this is all caused by vasoconstriction surely my chest pain could be too? I have autoimmune diseases too. X

[Hidden in reply to Hidden]

I dislike to comment anything "doom & gloom" but a lot of people who have vasculitis die, prematurely. This is not an easy condition to deal with. We are talking about lungs or heart or both. Vessels supplying these vital organs are dysfunctional/damaged/diseased is clearly not the best situation. In my case, it's a systemic autoimmune diseases that are responsible. Etiology is likely to be multi-factorial (and complex). I live in a colder region, which made the condition much worse each winter. Clinical trials would be useful to see if certain biologic drugs might help.

[Hidden in reply to Hidden]

I have one of the Vasculitis variants called Behcets Disease but micro vascular heart disease isn’t only confined to those with Vasculitis, other Rheumatic diseases are affected.

I am on a biologic drug called Infliximab which is known to be cardio protective yet I still developed vasospastic angina. If treated properly most patients with Vasculitis have a near normal life expectancy, much of the mortality rate can be attributed to treatment side effects, especially infection caused by high dose Prednisolone and other immunosuppressants.

[Hidden in reply to Hidden]

Thank you for sharing your thoughts.

I only see all the vasculitis/rheumatic conditions as "autoimmune spectrum". They all apear to be syndromes with individual variations and differences along with "complex overlaps/mix" due to genetic susceptibilities.

I do get to hear good things about Rituximab. I poorly tolerated infliximab.

Let's hope our small vessels opening up more.

[Flowers9 in reply to Hidden]

Hi just reading these replies. I just been diagnosed with Raynards and have terrible mottled purple skin the Dr said prob vasulitis on my last admission with chest pain he was a junior Dr. It's getting worse over the last 10 years I'm quite conscious of it now. Cardiologist have dismissed my pain as non cardiac but I'm wondering as I have autoimmune diseases that maybe this could be coronary spasms. Any advice greatly appreciated.

[Hidden in reply to Flowers9]

Hi Flowers9,

There are over 18 different Vasculitis types ( variants ), each type is usually classified by the size/ type of blood vessel they affect, small, medium or large. Vasculitis causes the lining of the blood vessel to become inflamed and this is what leads to symptoms.

Mottled, purple skin isn’t a symptom of Vasculitis as such, it’s not usually a diagnosis that a junior Dr would make without then referring you onto a specialist. All the Vasculitis types are rare diseases and they require specialist diagnosis and treatment.

There is an auto immune disease called anti phospholipid syndrome that can cause purple, mottled skin ( livedo reticularis ) here is a link to information about it

aps-support.org.uk/about-ap...

Unfortunately the only way to get a definitive answer is to see someone who specialises in auto immune disease or microvascular angina. It took me 4 years and over 9 second opinions to receive my Vasculitis diagnosis, unfortunately we need to be our own best advocates, ask lots of questions and keep pushing for answers.

[Flowers9 in reply to Hidden]

Thank u for your reply I'm very grateful. I'll go back to gp and have a chat he was worried about chest pain so wanted to deal with that first b4 worrying about the raynards. I only just been told it's that as it's got much worse since having chest pains. I just wonder if it's all connected xxxx

[Ansteynomad]

I was diagnosed on symptoms alone. Ten minutes with a cardiologist, then discharged to GP who I have not seen since. My GTN spray is on repeat prescription and I am left to get on with it. I have other issue sinthat I am still trying to work, Occupational Health don’t accept that this is a disability and my Union won’t help. This is not an easy road.

[Red18 in reply to Ansteynomad]

Hi Ansteynomad. Have you not had a andiogram?

[Ansteynomad in reply to Red18]

No, I had a myocardial perfusion scan, which was clear, was discharged by cardiology and then had to fight to be referred again. On the second occasion, I was diagnosed on symptoms and when I asked about seeing the cardiologist again he said - there's no need. This can be managed perfectly well in primary care.

[Red18 in reply to Ansteynomad]

Morning Ansteynomad. You know when you are not well. The best doctor is yourself. Too many professionals these days hear but not listen to you intently. I wish you well. When we get poorly,we realise even more so that your health is your wealth! Have a great day

[Milkfairy Heart Star in reply to Ansteynomad]

Ansteynomad

I am sorry that you are not getting the support you need.

You are absolutely correct it can be a bumpy road for those of us with MVA or VSA to travel.

Time for a second opinion?

You do need to be under the care of Cardiologist so you have the appropriate care. This what Prof Colin Berry's CorMicA research showed.

[Ansteynomad in reply to Milkfairy]

I;m not sure there's anyone in my area that could give a second opinion. Certainly there is no-one at the two local private hospitals with specific knowledge. I'm more concerned about the work situation really. The actual symptoms are just a nuisance.