Hi everyone. Never posted before but could do with some advice. Back in March I had a let’s call it a ‘cardiac’ episode as different doctors get cross when I called it an angina attack. .. even though some have said they think it was.
Had an echo which came back with mild mitralvalve regurgitation and an angio which came back clear.
However I keep having chest pain mainly at rest. It can go on for hours. Scary, and on about a 7 pain level. Chest feels tight, breathlessness. Uncomfortable feeling that everything is just squashed and hurts, with pain sometimes down right arm (I’m left handed so not sure if this makes any difference)
I’ve been on many different beta blockers and channel blockers some of which help (lacidipine being the best) but had to come off them due to severe mood swings and feeling like I want to kill people (yes really), as well as a complete compassion bypass. I’m now on mononitrate and Nicorandil which help a bit and my moods are more normal .
There has been talk of microvascular angina but my real issue is getting a confirmed diagnosis. I just keep being fobbed off and with my next check up now not till March I’m not sure what to do. They are treating me with heart meds but keep saying I’m not at risk of a heart attack. I’m struggling to work out how to manage this condition and feel forgotten. Can anyone advise??
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Mallowme
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Hi , I can sympathize with you I know it doesn't help but i understand completely. I have a similar problem and I am also struggling for help, mine has been going on for three years now! No help I know and I'm sorry but just wanted to let you know you are not alone this forum is great and maybe something will appear that will help you.
Thank you. It is good to know I’m not alone. Sadly I’ve found myself hoping it gets bad enough to need an ambulance just in the hope I get some help. Just sick of feeling like I’m on the edge of a bad angina attack.
It does help but sometimes need to use it 4 or 5 times in a day, and that’s on top of the Monomil and now Nicorandil. I know I’m not supposed to use it that many times so I try to only use it on the worst days.
I’m lucky ,exercise stress test showed blockage in LAD , I was in within a week and given 2 stents , but they told me I still have angina even though I got stents ,,,I use GTN spray at times , it helps ,,,, a woman opposite me in ward was checked out with angiogram,and no blockage found ,still had chest pains etc , given GTN spray to use when needed ,,, but not told anything like it could be micro vascular angina etc , push for help you need sometimes it helps to keep at them , good luck ,
It seems as though some doctors believe it’s real and others think woman with chest pain are just ‘stressed’ ... thank goodness for organisations lik BHF without them we would be worse off. X
I have lived with Microvascular and vasospastic for 8 years.
My coronary arteries have no permanent narrowings or blockages.
They go into temporary spasm reducing the blood supply to my heart. This is a type of angina.
Unfortunately both Microvascular and vasospastic are under recognised and poorly understood and not all Cardiologist have the expertise or knowledge how to diagnose or treat Microvascular or vasospastic angina.
I recognise your bewilderment and confusion about the conflicting opinions that you are hearing.
It can feel very lonely to live with the pain of these conditions which so few Cardiologists understand.
There are tests available to diagnose both Microvascular and vasospastic angina. I had a specialised angiogram to confirm my diagnosis of coronary vasospastic angina.
The BHF has some information about Microvascular and Vasospastic angina on their website.
Please don't feel alone there are several members of the forum who live with either Microvascular and or vasospastic angina and I am sure they will be along to share their experiences with you too.
My biggest problem is how to manage it. I keep hoping if I can get a confirmed diagnosis I can get some help to understand my body better and get some sort of normality. Last year before this I cycled the London to Brighton. Now some days I can barely potter round the kitchen without it causing chest pain. The meds have helped with exercise but it’s the small things that seem to set it off which means I don’t know how to stop it.
No apology required.I found having a confirmed diagnosis helps me cope better because as you say I know what's happening in my body.
It takes time for anybody to come to terms with a life changing illness. Be patient and kind to yourself.
I suggest you keep a diary to see if you can spot the triggers of your symptoms.
The cold, mental and emotional stress are common triggers.
Microvascular and vasospastic angina can also be very unpredictable and that is scary.
Learning to manage the stress and uncertainty of MVA is really important.
I find Tai Chi, Yoga and Meditation helps me along with breathing and relaxation techniques including self hypnosis.
I have the support of a knowledgeable and empathetic Cardiologist.
The cold is a problem for me and as the winter progresses the more layers I wear. I never go out without covering my nose and mouth as the cold air will kick off my chest pain.
There are some Cardiologists who are specialists and carry out the tests to diagnose these types of angina.
The vasospastic info is very interesting. I definitely struggle with wet weather (but maybe cold too) and in the morning I have to take medication and get up slowly otherwise it causes problems all day.
I don’t quite understand the target heart rate though.
The only thing I can say is if you feel it’s a heart attack call an ambulance. Never mind about what they think about angina. I had two heart attacks at home and still no one believed me. Eventually I was told I’d dodged a bullet and had a stent fitted (after I’d been confined to my bed on a monitor for eight days). I had a 90% blockage.
I agree however the problem Maisie2014 is those of us with clear coronary arteries are often dismissed and told we can't have angina or have a heart attack.
As soon as a Cardiologist reads your angiogram shows no obstructions they show you the door!
Microvascular and vasospastic angina are so poorly understood and recognised it can take sometime to get a diagnosis and the correct treatment.
I do realise if it was that bad I would have to call an ambulance. It doesn’t quite get that severe and as Milkfairy said my main arteries are clear, which is why we feel ignored. Thank you though.
Thank you thank you thank you. At last I don’t feel a fraud and that it’s just me being a ‘drama queen’. This is real, even my family say it’s nothing to worry about since told it wasn’t a heart attack. I tend to hide how bad I feel as much as possible as feel such a nuisance.
When I was first diagnosed over 8 years it was a very lonely place to be.I had no contact with any other patients living with Microvascular and vasospastic angina.
I was told again and again that I couldn't have angina.
I carry 2 documents with me at all times my Admission plan which is on my local hospital's electronic records system and my angiogram with acetylcholine results which confirms my diagnosis.
The BHF have updated the information on the website and the knowledge of the conditions is increasing.
You are absolutely not a fraud.
Microvascular dysfunction and vasospastic angina are serious long term heart conditions worthy of an accurate diagnosis and treatment.
I suggest you show your relatives the information on the BHF website about Microvascular angina to help them understand a little better about the condition.
Hello Mallowme. I have microvascular angina - I think! I guess within the MVA and vasospastic angina community there are three groups. Those like Milkfairy who have a confirmed diagnosis using specialist diagnostic techniques. My guess is they are in the minority. Then there are people like me who have been told by specialist cardiologists that they probably have MVA and/or vasospastic angina but haven't had the specialised tests. My lack of a 100% nailed on diagnosis doesn't bother me hugely as my medications manage the condition reasonably well. Some people though may want the certainty of a confirmed diagnosis.
Then there are a lot of people like you who are undiagnosed and unrecognised and looking for answers in the wilderness.
As Milkfairy has said the problem is the conditions are not widely understood even by cardiologists and the gold standards tests are there but hard to come by.
But your story of being misunderstood and your pain not being recognised is a very familiar one.
My advice would be to gather as much information as you can about the conditions and also keep a diary. Then you can't be so easily fobbed off. If you can find a specialist who recognises the conditions and is willing to listen and manage your medication I'm sure it will make a huge difference.
Surely Dunestar we should all have access to the tests so our heart conditions can be properly diagnosed and we receive the appropriate treatment through the NHS?
A diagnosis of vasospastic angina in particular is only possible by invasive tests.
The causes and treatment of Microvascular dysfunction and vasospastic angina are different.
The traditional approach of working through a list of medications that a particular specialist has always used in not patient centred evidence based care.
A probable diagnosis is not always adequate or appropriate.
Beta blockers can be very helpful for those with Microvascular dysfunction however they can make vasospasms much worse.
There is also a group of patients who despite treatment still experience debilitating symptoms.
There is now a growing awareness amongst Interventional Cardiologist that it is possible to test for both Microvascular dysfunction and vasospastic angina.
Increasingly the tests will be available.
The BHF and National Institute of Health Research ( NIHR) has formed a working party to establish agreed standards of diagnosis and treatment strategies for Microvascular dysfunction and vasospastic angina.
Ok, this is making more sense now. Straight after the standard angio the lady told me my main arteries were clear and that this was possibly MVA, which she put on the paperwork. Since then the hospital cardiologist-registrars have told me I’m imagining my symptoms, that they’re panic attacks and one even said there was no such thing as MVA, and to take a couple of paracetamol.
Thankfully my gp has heard of it and has been supportive in trying to get me help, and adjust the meds.
The latest cardio registrar still says no to cardiac mri and wants me to have a lunch function test-something that was said back in March and I was told these are only done as an emergency because of the Covid risks.
I don’t mind not having a confirmed diagnosis if the meds help but so far they have either made it worse or only take the edge off (which is the case now, I should be grateful).
It’s the not understanding my limits or restrictions or even what to put on my travel insurance which I had to let lapse as had no idea how to explain all this (I know we’re not going anywhere, it was just another thing to upset me).
I used to cycle and swim a lot and climb and go caving etc etc. Now wonder if I will ever be able to do those things again. -even after Covid!
Other than beta blockers and calcium channel blockers are there any other options anyone has had success with?
It is actually really important to have the correct diagnosis so you can be treated with the best combination of medication to treat your symptoms this can take time and patience.
I would ask to be seen by a Consultant Cardiologist who has some understanding of both Microvascular dysfunction and Vasospastic angina.
Women are known to often have their heart attacks initially diagnosed as panic attacks. The BHF launched their Biology and Bias Campaign last year to highlight the issue of unconscious bias by the Cardiology world towards women heart patients.
I too was told I was anxious having a panic attack not angina and prescribed beta blockers. I ended up in CCU for 5 days as it made my coronary artery spasms worse. Beta blockers are contraindicated if you have vasospastic angina. I needed an infusion of GTN and morphine to manage my angina pain and stop the vasospasms.
It is also very concerning that a doctor involved in looking after heart patients says that there is no such thing as Microvascular angina. 😱
I know. It was crazy and all in the middle of the start of COVID. Felt I was taking their time from ‘real’ sick people. I don’t have an appointment until March next year now, so am having to find my own way to manage this. Hence posting on this forum.
Sorry Milkfairy but I've read through my post again several times and I fail to see how you can conclude from it that I am not of the view that everyone should have access to the appropriate tests.
I think I need a break from this site as comments from some posters seem to be getting increasingly scratchy. Have a good Christmas everyone!
At the beginning I was told i more than likely had coronary artery spasms and or micro vascular dysfunction.
I’ve had lots of tests my last one being an MRI stress perfusion scan.
I’m waiting for my cardiologist to ring me on 30th Dec for a sum up of everything.
The last time I went to A&E I was told I was anxious and the Dr I saw said he didn’t know that much about heart conditions !!!!!!!! I still had quite severe chest pain, when I told him he just said when you get home have a good rest you’ll be fine !!!!! 😡😡
I felt terrible and a fraud and a neurotic woman who was completely dismissed and not taken seriously, mainly as I had clear coronary arteries!!!!!!!!
So frustrating. I personally won’t go back to A&E to be categorised like that when I’m feeling that bad.
I understand completely. The minute ur main arteries are clear some doctors think ur making it all up. .. especially some a&e doctors as they only deal with certain things. Any condition outside their tick box and they’re flummoxed and the minute it’s no longer ‘an emergency’ they send u home.
I had one cardiac registrar tell me there was nothing wrong with me too. I’m fortunate that my gp is fantastic and and has helped.... mind u we are still battling as cardio keep ignoring gp’s letters etc.
Talk to your gp and ask to be referred for a second opinion to someone who else who does recognise MVA you will go to the start of the list again but at least u will be seen by someone else.
You’re not a fraud or neurotic and u need to be taken seriously as u do have genuine pain and a genuine condition.
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