Hi, this is my first post although I have been reading a few things and learning a great deal.I've been struggling with chest pains and breathing difficulties for over six years and many times have been told my heart is absolutely fine. One cardiologist even said I had a heart as strong as a bull...
My biggest concern was the feeling of construction best described as the "bra that's too tight". I even bought bras several sizes too large but in the end I had to stop wearing them.
In July I was rushed to A&E with severe chest pains, vomiting, fever etc. but after a few hours was discharged ECG normal, bloods normal and clear X-ray. I then began a nightmare six months as my chest pains got worse and the GP and cardiac team told me it was in my head/menopause/anxiety/indigestion. One GP did get a gastroscopy done and checked me for throat cancer. All the time things were getting worse, pains coming more often especially at night or when lying down and after absolutely no strenuous activity which I found most concerning. Eventually I managed to see a GP (took 5 weeks) who put me on beta blockers which increased the pain. I was taken to A&E just before Christmas and the Dr thought it was unstable angina. ECG showed first degree atrioventricular block and some ectopics. They kept me in for a week and gave me aspirin, clopidogrel, atovarstatin, ranolazine, ramipril and adizem!!! My angiogram was done on Christmas Eve at the cardiac specialist hospital and I was allowed home. The discharge letter says? microvascular coronary disease.
The meds have reduced the extreme breathlessness but not the pain, it's like I can feel what's happening but it's a bit muffled compared to pre-meds. Also throwing a spanner in the works is I'm on methotrexate injections for rheumatoid arthritis. I wonder if the inflammation can affect my heart but my rheumatologist really poo-pooed that suggestion.
I have no outpatient appointment for either of the two hospitals so I made a GP appointment which is in two weeks time.
It's a relief not to be told I'm imagining things but I feel at a loss as to where I go now. I'm booked for a myocardial perfusion scan in Feb/March but will that show microvascular problems?
With apologies for the very long post and thanks to anyone who made it to the end!!
All suggestions gratefully received,
Written by
Flamingheart
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I am sorry you have joined the angina/ ischaemia without obstructed coronary arteries ANOCA/INOCA club.
Microvascular angina is caused by the inability of the small blood vessels to dilate or stay dilated in response to extra demands like exercise.
You may see the terms microvascular dysfunction or coronary microvascular disease to describe microvascular angina.
A myocardial perfusion scan can in some cases detect microvascular dysfunction but not coronary vasospasms.
Having Rheumatoid arthritis can increase a person's risk of developing microvascular angina.
Microvascular angina seems to be more likely to be first diagnosed in women during the menopause.
I live with another type of ANOCA/INOCA, vasospastic angina, my coronary arteries go into transient constrictions reducing the blood supply to my heart.
I experience most of my pain at rest, especially during the night. Beta blockers made my coronary vasospasms worse and are contraindicated if you have coronary vasospasms rather than microvascular disease.
I had a functional angiogram using acetylcholine, over 10 years ago to confirm my diagnosis.
You can also have microvascular coronary vasospasms too!
The knowledge and awareness of microvascular and vasospastic angina has certainly increased in the 12 years, I have lived with vasospastic angina.
It can be a bewildering diagnosis, componded by the lack of understanding of the condition by most Cardiologists.
It can take time to find the best combination of medication that will suit you best.
The medication you were given is often prescribed for people with a suspected heart attack rather than being specific for treating microvascular dysfunction.
I suggest you ask your GP to refer you to a specialist who has some understanding of microvascular and vasospastic angina. Then your medication can be reviewed after the appropriate testing to see if you have microvascular dysfunction or coronary vasospasms.
In the meantime it may help to kerp a log of your symptoms to see if you can spot any triggers of your angina.
Mine are the cold, emotional, mental and physical stress.
The BHF 'Understanding Angina ' booklet gives this website, created by four patients, as a resource.
Thank you for the advice and really useful links, I will try to get a referral to someone with understanding of these conditions. I have started a log of what happens when and this evening I think it was going to bed in a cold bedroom following a night sitting by the fire. It's snowing outside and is definitely minus something, I always preferred our bedroom cool but maybe that needs to change.
The pain was quite intense and deep going right to my finger tips, and felt like they might burst. Haven't had that before, quite scary.
I always preferred a cool bedroom and could never sleep with the heating on. Last winter and this winter - I have needed to make sure the bedroom radiator is turned up high and the bedroom really warm before going to bed otherwise I can't get to sleep - incredible tightness in my chest. Just need summer temps all year round!
Hello Flamingheart, I'm sorry to hear about the problems you have been experiencing with chest pain. I can totally sympathise. I have been experiencing chest pain over this last year. A feeling of constriction around the chest, an uncomfortable heavy weight on my chest when I lie down in bed at night and chest pain both at rest and during exertion. All my blood tests were normal as well and a clear x-ray. A CT scan showed no blocked arteries. I still require further testing but my problems are thought to be Vasospastic Angina. I don't tolerate cold conditions at all. I experienced less problems over the summer months although I did continue to suffer attacks despite the warmer weather. My attacks in summer can be bought on by wind and humidity. I have noticed foggy/misty days are particularly bothersome. The very cold temperatures we are currently experiencing continues to be most challenging of all for me. Breathing in very cold air can bring on an angina attack within minutes. I find GTN helps when I experience an attack and usually reduces my chest pain/pressure within minutes. Sometimes the pressure can start off mildly and then builds. During one visit to A&E last year I described the pressure feeling like a balloon that it being inflated within my chest. During bad attacks I get that 'sense of doom' which others with this condition might be able to understand although I find it difficult to describe. During these occasions I take my GTN and sit quietly until I feel better. I have had a few occasions when I have ended up in A&E due to severe pain because the GTN has either not worked quickly or as effectively as it normally does.
It might be worth asking if you can be referred to a cardiologist who specialises in Microvascular Angina.
Yes thanks Milkfairy, a scarf around your face really helps. Someone recommended using a face mask. I can understand why most of your admissions are in the winter. From late autumn onwards, week on week my episodes of angina and need for GTN have increased. I'm glad Christmas remained mild and I actually felt quite well in comparison to this week! Night time is always the worst when the temperatures fall further. I will be counting down the weeks until spring returns.
Thanks for sharing, yes, a balloon in your chest sounds about right!! I'm worried because one of the cardiologists at our local hospital told me that if I did have microvascular angina it wasn't dangerous and they can't operate on it so no point getting a diagnosis 😯
I'm really hoping not to get referred back there, and think I should explain to the GP why.
I usually enjoy the snow so tomorrow will be a big test... will definitely wrap up warm, now where's my balaclava?!?
I hope you manage to get a correct diagnosis. I can only speak from my own experience in that I feel a confirmed diagnosis is important to me to ensure I get prescribed the correct medication to gain better control over my symptoms - that is my hope anyway.
Lancashire... which means we do have a specialist cardiac hospital... very fortunate. But I was in A&E in a local hospital who then referred me on to the cardiac hospital. I was told my GP can't refer directly to the cardiac hospital but that seems strange if that's where the microvascular/vasospastic specialists are!
There are two centres in Lancahshire taking part, Blackpool and Liverpool Heart and Chest Hospitals.
Another option is to contact the Patient Advisory Liaison Service, PALS of the hospital, raising your concerns that you do not appear to have any follow up care.
can I just ask, more the replies; you given very knowledgeable and good advice, but can I ask given what you've said of the condition, or variations of the conditions it might be, have any of you ever tried breathing exercises Buteko/ pap worth?
I mean no you haven't or no they don't work in your experience? Or they might work for some but not for others? Or you've never heard this being advised?
Yes, I do use breathing and relaxation techniques. I also practice yoga, tai chi and Mindfulness meditation.
Learning to calm my automatic nervous system is a very important strategy.
However my severe, crescending, episodes of coronary vasospasms feel like being in labour to me.
I can't speak or move as I have to concentrate so much on my breathing.
Coronary vasospasms are notoriously prolonged and painful, they occur at rest, lasting more than 30 minutes.
Eventually I do need to go into hospital for a respite from my frequent debilitating symptoms.
I also have dynamic ECG changes and slight troponin blood level rises with my episodes of chestpain. I need my coronary vasospasms to be stopped by an IV GTN infusion along with morphine to manage my pain.
It's a fine balance, a bit like walking a tight rope. Staying calm and knowing that a prolonged coronary vasospasm can cause a heart attack.
I don't want to hijack this thread and apologies if it seems that I am but...
This Ukrainian guy previously mentioned ; Buteko, back in the sixties claimed that almost everything that is wrong with us (but with particular reference to asthma , heart, blood pressure- and particularly mentioned reynaurds) were due to over breathing.
For most of us our oxygen is always 95% and no matter how much we breath it will never be more.The problem according to buteo is co2 which should be 6% in our blood but is often lower such as 4 or 3.5%.Over time this leads to disease.
If you lower your breathing this co2 rises and a lot of good things happen- such as reversing disease.There. are exercises for this which include holding your breath.
I know not everyone agrees with this, but I'm just saying it might be worth looking into.
I don't have the angina you describe, and you mention how how painful it is, and how scary if it can lead to something worse, but this breathing -breathing less- has helped a lot of people .
Gosh those pains sound extremely intense. Mine are severe for ten to fifteen minutes but then dial down a fraction for another three to four hours. I'm going to get my yoga mat out you've inspired me, I'd stopped my practice because my wrists are quite weak (because of the RA) but that's actually the opposite of what I ought to do.Thanks again Milkfairy!
I have not tried any breathing exercises and they haven't been suggested. I've heard about a meditation app which I did plan to look at but not done so yet.
I can feel well, no chest pain but step outside into the freezing cold- the minute I breath in the cold air - within a matter of minutes my arteries have reacted and I have found the only way to reverse this is to move into a warm environment and/or take GTN. A lot of us complain about this trigger - moving from warm to cold. However, I understand what Milkfairy says about not being able to speak or move and having to concentrate on your breathing. During a bad attack I can't climb up the stairs and feel at near collapse. Unfortunately, I have little control over how my arteries react to the cold other than trying to keep myself warm and limiting time spent outdoors when it is extremely cold as it is currently.
In contrast, during the better weather I have less pain/episodes, require less GTN and I am more physically active. It's an incredibly debilitating condition. You can be well one week and then floored by it the following week.
I was tempted to say "welcome to the Club!" but that would be rather flippant! As a long term sufferer of MVD I totally sympathise with you. As Milkfairy has stated MVD is not very well known and after a trip to A&E or/and, in my case the Bristol Heart Institute you leave feeling a bit of a fraud after being told that there'e nothing wrong with your arteries and your heart is beating perfectly. So you return home and still have the chest pains, and neck pains, and pain in your left arm. Another symptom is Reynauds which is misserable in this weather. I've also suffered from over medication which had the effect of reducing my blood pressure and heart beat to such an extend that my GP got me blue lighted into A&E.
In saying all that I have lived with this for over 20 years. It comes and it goes, and at the moment I am having only occasional attacks. I find that keeping warm, eating a sensible diet and reducing alcohol helps with my mental wellbeing, which helps me cope better with the MVD symptoms.
I have come to the conclusion that at the moment there is no cure for this condition and I live with it and try not to get to distraught when I experience the symptoms.
Thanks for sharing, it's actually reassuring to hear from someone who has lived and coped with mvd for so long.I haven't got a firm diagnosis yet, (hence the question mark in my title, that's what the cardiologist wrote after my "clear" angiogram).
For me the biggest relief is knowing that it's not all in my imagination which is what I'd been told so many times. For you and Milkfairy and others who were getting these symptoms ten and twenty years ago it must have been much much worse. I'm telling as many of my friends as will listen about the smaller blood vessels of the heart!!
I understand how frustrating it is not being taken seriously. I've had microvascular angina for many years - since my teenage years in fact. Occasionally doctors would hear something when listening to my chest, then do an ECG and say nothing was wrong. Some would do an echo with similar results. It took a takotsubo episode to finally have it acknowledged. My chest pains, which are not too severe, and SOB are on exertion, though occasionally when I'm lying in bed or sitting I get very severe pain which I put down to indigestion as I have reflux disease. I have started to wonder if this is vasospasm however bringing up wind does relieve it. (I am on the usual HF meds and have a GTN spray but just stopping walking does stop the pain after a little while.)
Takostubo Cardiomyopathy is an acute episode of heart failure. The symptoms can mimic a heart attack. The shape of the heart changes shape, to look like a japanese octopus trap, hence the name.
The heart muscle usually recovers, however people can be left with on going issues.
Microvascular and vasospastic angina are types of ischaemic heart disease, caused by the blood vessels themselves not working properly.
Really sorry you’ve been through that. As Milkfairy said welcome to the club. The information Milkfairy provided (the links and experience) is second to none - the information helped and armed me with the right questions when discussing things with a consultant. I’ve been on and off the BHF community over the last 18 months and recently rejoined.
It took 18 months to get my diagnosis because of a failed referral - I literally dropped off someone’s list - I didn’t know this until I got a letter of apology a year later. In the meantime there were several trips by ambulance, but at the point of a clear coronary artery scan I was referred to gastrointestinal, even with raised Troponin levels showing up on blood tests. They really shouldn’t just stop at the Coronary Angiogram. Which is what they did with me initially. They hadn’t even taken an echo at the point they were sending me to gastrointestinal.
They eventually caught a spasm on ECG, which is really difficult. It only happened because I’d gone in (again by ambulance). The ECG was initially clear so they had someone walk me to x-ray, at which point all the pains started. So they hooked me back up. One interesting aspect is my iwatch had been catching the spasms on its ECG. And I had been sending those PDFs to my GP. The hospital also looked and said it had caught the same pattern.
Following the ECG I then had a myocardial profusion scan and echo. Not immediately, it was a referral. So another 6 months wait. But after those results I finally got the diagnosis. I’m on calcium channel blockers, long acting nitrates and statins. That mix seems to control it. I’m aware of it, i get a weirdness in my chest and I do get breathless from time to time, but not the chest pain I used to get. Nothing like that. I hope this information helps, and hopefully things will get better now you have diagnosis. I think I found the mental health side afterwords difficult to deal with. It’s been 2+ years now and I’ve I’d say it’s taken that long to accept the changes to my life. And there have been inevitable changes. But I do feel lucky to have this under control now. I know that not knowing what you’re dealing with, especially when it’s unstable is so difficult.
Sorry to hear you dropped off the list, I wonder how that even happens? After my admission to A&E I was initially really impressed. Quick referral to Rapid Access Chest Pain Clinic and lots of tests and monitoring done. Sadly it all fell to pieces after that, my results were mysteriously lost and when they resurfaced I'd miraculously grown from 167cm to 187cm, shed 20kg of weight and had a list of medication I couldn't even pronounce! My name and NHS number were on the report but everything else was obviously not my information or results. I phoned my surgery who said phone cardiology. The man on the phone was really rude and offhand, he was only interested in getting the height, weight and meds corrected. No apology and he was the one who said I probably had indigestion (I'd just had a clear gastroscopy done). I wasn't a happy bunny that day!!!!Luckily the GP I saw in December was on the ball because my poor 💜 was getting very weary!!!
Yes unfortunately I just get horrendous headaches and my blood pressure drops down really really quickly. First time I was given it by a triage nurse I fainted! Second time in ambulance I did the same! Last lot of paramedics gave me a tablet not spray and monitored my BP carefully, the young paramedic panicked when she watched my BP go through the floor...but at least she could remove the tablet. Not sure if this reaction is normal but I have to be very careful, sitting down and preferably not alone if I'm to take it.
Thank you for your post Flamingheart and to everyone who replied. It's triggered a lot of further questions about my partner's similar diagnosis but I'm going to start another thread because my questions are slightly different as his symptoms are subtly different too.I'm particularly interested in the cause of his, and initial triggers.
Welcome to the club no one wants to be in! I am so sorry you have had those reactions from the Doctors, it’s very frustrating. I completely understand how you feel I have had increasing chest pains for years culminating in not being able to walk more than 100 yards last April on a 60th Birthday weekend away in London. I stupidly had been ignoring chest pains on dog walks for a long time leading up to this.
After checks in hospital I was very lucky to be referred to a cardiologist for an angiogram. This showed no blockages etc but the cardiologist did put on the discharge probable microvascular angina. I have had some invaluable help on here, especially from Milkfairy and have now been put on a waiting list for another angiogram with acetylcholine for further investigation.
I am on a cocktail of meds, like everyone else on here and they have helped. Mentally I have found it so helpful to be on here, it helps to hear everyone’s tips and the support is so beneficial. Kind51’s description of the pain being like a balloon is completely right, exactly what it feels like.
I think the lack of information and help from doctors/hospitals really makes the situation worse and without this site I’m not sure I’d know anything more than when the pains started.
The links and tips from everyone have given me so much information and I definitely urge you to look through them.
The cold at the moment is a struggle that’s for sure and I too am having to go to bed and wake up in a much warmer room than usual
Oh that sounds so familiar, I was ignoring the signs they say don't ignore because I didn't want another trip to A&E to be told I had a normal X-ray and ECG and no troponin!By the time I was admitted I couldn't even walk up stairs without needing a rest, having been a farmer and a teacher most of my life it was a bit of a shock.
Can I ask how you were referred for the angio with acetylcholine? Did your GP refer you?
After the birthday weekend I called the GP and they told me to go to A&E. They were really good, did loads of tests etc but nothing really showed up. The A&E doctor at our local hospital told me he was 99% sure it was Angina but that unfortunately only the GP could refer me on to a cardiologist.
I rang the GP the next day and they saw me straight away. They put me on some meds and referred me to the rapid chest clinic. They saw me within two weeks but also couldn’t find anything even though the symptoms by this time were so bad I couldn’t walk far at all and this was in April so not very cold. They then referred me to a cardiologist. I saw a member of the cardiologist team pretty quickly and he referred me for the angiogram. Thistook 6 months for the appointment. On the day I mentioned to the cardiologist could it be microvascular and he said he would do the extra part of the angiogram with acetylcholine but an emergency came in so he couldn’t. Whilst I was having the angiogram though the symptoms started and they had to give me the gtn so he then diagnosed probable microvascular. There was no follow up just a change in medication and a referral for cardiac rehab but on the day that was cancelled which was upsetting the cardiac nurse who rang to tell me happened to mention I could ask for further tests within six months
It was then when I posted on here asking for info that Milkfairy was really helpful and said I could go back and ask for them to see me again that I emailed the cardiologist’s secretary and he got me telephone call with the cardiologist who agreed to do a further angiogram definitely with the acetylcholine this time so I’m waiting for that
Sorry this reply is so long!! Didn’t know how to shorten it without explaining all the steps!
Gosh, that sounds like a similar story to mine, I just didn't get referred by the rapid access clinic. Very helpful though as it makes me realise just how much I have to self advocate for treatment and to see the right person. Thanks for sharing.
This sounds very like my experiences. I experienced angina-like symptoms on light exercise, however, an angiogram confirmed my arteries were clear. As microvascular angina was then suspected, I had the Nuclear perfusion test which came back good, so it was repeated with the same results. I've struggled with these symptoms since 2014. I also found that beta blockers just seemed to exasperate the symptoms making me feel significantly worse than just the angina. Two years ago Ranolozine was introduced into my medications which seemed to help. Then in May 2024, my cardiologist prescribed Dapagliflozin (a diabetic drug - which luckily I am not - that has a side effect of being useful in treating heart disease), after two weeks, my symptoms had all but disappeared. I hope this helps and good luck finding a solution.
WOW that's a good result. I'm booked for the perfusion test but wondering if the acetylcholine angio might be more useful? Guess I have to trust the Drs and consultants who know what they are doing.I've been on ranolazine since I was admitted and the cardiologist has increased the dose from 375mg to 500mg twice a day which does seem to help the pain until I lie down.
In my case, nobody seemed to be able to find the root cause of my pain. I saw lots of different cardiologists from several hospitals over the years; one admitted he had no idea what was wrong with me and referred me elsewhere, the others mainly disagreed with the previous cardiologist and all tinkered with my meds in the hope (mine too) of stumbling on something that relieved the pain. With 10 years of disappointment and the pain getting worse every year, I learned to be hopeful, but the experience also taught me to be very cautious. I found that keeping meticulous records of medication changes with their benefits and side effects, enabled me to maintain continuity across the consultants and have more control in the direction of my treatment. Luckily in May 2024, a new cardiologist suggested Dapagliflozin and I was pleasantly surprised by the results. After all this time, I still do not have a diagnosis but with Dapagliflozin I am at last free of the pain.
A functional invasive angiogram, using adenosine and guidewires to assess how the blood flows through the small blood vessels, is how microvascular dysfunction can be diagnosed. Then another chemical acetylcholine is used. Normal functioning coronary arteries should dilate in response to acetylcholine.
If the coronary arteries constrict, accompanied by certain ECG changes and chestpain, vasospastic angina can be confirmed.
Functional invasive angiograms are only available in larger cardiac centres.
My vasospastic angina was diagnosed by a functional angiogram in 2014. I had spontaneous and acetylcholine induced coronary vasospasms.
My coronary arteries are very trigger happy.
Over the years I have armed myself with knowledge, to be able to advocate for myself.
Sorry to be late to the table. I was diagnosed with microvascular angina in 2019. I'm a bit of an outlier in the community in that I don't get chest pain, just breathlessness. I had all my diagnostic testing done at the specialist lung and heart centre (Harefield hospital) which just happens to be up the road from me. I was referred there by my GP but I think it is more usual for referrals to come via a district hospital. Diagnosis can be hit and miss but you are in good hands if you are on the books of a specialist heart centre.
My route to diagnosis was via a stress echo which showed global ischaemia (lack of blood flow to the heart) followed by an angio which showed more or less clear main arteries, so the consultant concluded the problem was at the microvessel level.
I was told by a microvascular angina specialist that a cardiac MRI stress perfusion test can diagnose MVA. The advantage of this test is that it's non-invasive but the downside is it can't diagnose vasospastic angina. The classic symptoms of MVA are chest pain following exertion when the heart requires more blood supply. If your pain is more at night and no exertion then that might ring a bell for vasospastic angina. This is why a functional angio has come to be seen as the gold standard test because it can cover all angles. The downside is that it's invasive.
It looks like they have thrown the kitchen sink at you in terms of medication. They did the same to me after my stress echo and I can remember all too well how difficult it was to cope. They do it to cover all angles eg clopidogrel is prescribed in case the angio shows you need a stent. Hopefully they can drop some once you have a clear diagnosis. But as others have said it can take a while to find the optimum combination which works best for you. I take isosorbide mononitrate which is a vasodilator, ramipril and atorvastatin.
I wish you well on your journey. If you are on Facebook there is a group there for INOCA conditions facebook.com/groups/2879606...
The International Heart Spasms Alliance is listed in the BHF 'Understanding Angina' booklet as a resource for people living with microvascular and vasospastic angina.
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