Hope you are all well, been reading on here for 2 weeks or so
I’m 43 years old. After the birth of my first and only child (almost 8 years ago) I suffered heart failure due to pregnancy - post partum cardiomyopathy, very rare, but happens in the last month of pregnancy and can be misdiagnosed for other conditions - as it was with myself, my lungs completely filled up with fluid and I couldn’t breathe, was choking to death literally, I ended up on a life support machine. I didn’t have a heart attack but my EJection fraction was only 34%, my heart was enlarged, regurgitation in all valves. Kidney failure also. My daughter was also very poorly, which we knew during pregnancy and she required surgery at Alderhey for a condition not related to my heart condition, long story short we both are alive, I recovered my heart function (apparently pregnancy related heart failure is the only heart failure you can recover from, sadly some don’t) so I felt very lucky, and feel blessed I have a beautiful little girl, however following the months of recovery I began to get chest pains, burning left arm that felt like a blood pressure cuff squeezing much of my arm, I had multiple ECGs and echos all when the pain wasn’t there, all showing normal. I put up with this burning arm pain for two years, doctors telling me it was anxiety, even had scans of my spine/neck. Out the blue it went away and for another 2 years haven’t had it, have exercised and been fine, I have been left with mild diastolic dysfunction and a mitral value regurgitation since I recovered. But Bam ! The last two weeks it’s come back out of the blue, I was driving and the squeezing burning sensation started, this time it travelled upto my jaw, I got really scared, felt hot, sick, opened my window, felt doomed, I couldn’t stop as they was no side road on the A55 where I was all I wanted to do was get home, I actually don’t know how I got home. My husband thinks it’s anxiety, the pain has continued along with with stabbing prickling pains in my elbow and wrist. I know this may sound nerve related but my arm feels so heavy, and it can radiate to the middle of my back, I went to A&E at 1am by the time I had an ecg was 6.30am! Said it was normal and all bloods were normal, sent home. I don’t think I’m having heart attacks but concerned I’m having warning signs, I’ve been to my GP who also did an ECG that came back abnormal - T wave Flattening, I have done what I always do and googled that what that could be - Ischemic heart disease. So I’m confused within 1 week I had an abnormal ECG/normal ECG. I’m worried I have unstable angina as most of these symptoms I feel just sat down. My arm is burning and feeling tight now and can last for hours. My GP has referred me to rapid chest pain clinic which my appointment is on Monday, it’s taken 17 days to come through, so I feel like a ticking time bomb. I’ve told my husband and GP the pain comes on first then I get anxious because of it. I was told by my cardiologist 7 years ago if I had blocked arteries my heart wouldn’t have recovered from the pregnancy related heart failure which I can agree with, but my Dad passed away from CAD, 2 years ago, his Mum passed away at 36 from a sticking valve, and his sister at 52 from CAD also. I’m not overweight, I don’t smoke. I do drink moderately mainly red wine , I’m vegetarian and have been for over 20 years, but have always eaten a lot of cheese! My Cholesterol is 5.2
I get scared when alone with my daughter, I picked her up from school yesterday and my arm pain the heaviness intensified when I driving again, were home now and it’s just burning and heavy, I think when I have further tests on Monday it will be just a stress tests which I know they can’t really see the arteries in your heart, my dad ended up having a heart attack before they stented him, they knew he had blockages before his stents were fitted and didn’t stent him until after his HA, then they said he needed more stents and they would be done further down the line. Before that happened he had another HA and passed away, he did also have lung fibrosis was on oxygen and was diabetic so I know that contributed to it a lot. I am just wondering if anyone has ever just experienced angina in mainly the left arm? And what did it feel like?
Sorry for the long ramble ! I wish you all well
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Maxiboo
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Hi Maxiboo, with your family history and what happened to you when you were pregnant, it’s completely understandable that you are anxious.
I had atypical angina ( prinz metal disease) for a number of years. I was lucky to get a relatively swift diagnosis as it’s notoriously difficult to detect. My pain only lasted a few minutes at a time but I could get several episodes one after the other. Weirdly it was often at the same time of day and always when I was resting.The pain was in my chest, back, jaw and left arm.
Once I was diagnosed, I was put on calcium channel blockers and that pretty much controlled my symptoms.
Thank you so much for your reply I have questions prinzmetal 7 years ago to my cardiologist and he shrugged it off! I just hope I get some answers on Monday, I want my tests to be normal but a the same time I will continue to wonder why my ECG was abnormal and I have chest and arm pain. I worry it’s unstable and I’m a ticking time bomb. Thank you for your advise and I will let you know how I get on come Monday x
I acknowledge your anxiety about your symptoms. It is very unsettling not knowing why you have chest pain especially with your previous experience and family history.
Vasospastic angina is the term now used to describe Coronary artery spasms aka Printzmetal/ Variant angina.
Microvascular angina is when the tiny blood vessels either fail to dilate or constrict.
I suggest you ask your GP to refer you to a Cardiologist who has experience in caring for patients with Cardiomyopathy and then if necessary assess you for MVA or VSA.
Another really good source of support is the BHF helpline where you can talk to one of Cardiac nurses 0300 330 3311.
There are also some support groups for people with Cardiomyopathy.
Thank you so much for talking the time to reply Milkfairy and the link you have provided, it’s very much appreciated. I hope I get some answers on Monday, as I feel like a ticking time bomb. I will reply and let you all know how I have got on x
I am really really sorry to read that you are going through all this pain and anxiety.
My first firm recommendation is that, if you feel the need to attend A&E, you do not take yourself but call an ambulance. You are fully entitled to do this if you experience chest pain and it will mean that the paramedics may be able to take an ECG while you are in the middle of an attack, not 5 hours later. And, if you arrive at A&E by ambulance, you will go straight in and get (relatively) early attention.
My next recommendation is that you keep all your ECGs in case it turns out to be useful to have them in the future, for example for analysis by a specialist cardiologist who may be able to see things that others would miss.
T-wave flattening can indeed be an indication of ischemia (oxygen deprivation caused by poor blood flow) and it may be that you are suffering from intermittent ischemia. I think that you will need further investigations of your arteries, which might include an angiogram to check whether your arteries are clear.
My father and I both suffer from angina, but of very different forms, and I just wonder if consideration of our respective symptoms might contain a pointer to your illness. My father has conventional coronary artery disease with a partially blocked artery, and he occasionally suffers pain through exertion or psychological stress that is relieved by rest or GTN spray. I have microvascular angina and suffer continual pain and/or feelings of shortness of breath: these occur at rest and worsen at night. I find that exertion can make me feel either better or worse or, indeed, no different but that gentle walking can often help a little. Psychological stress - especially when sitting as when driving - makes me worse. Sometimes I have experienced more intense attacks that might last an hour or more but which thankfully seem to be in the past due to treatment.
My illness used to be intermittent: it would be with me for a period of weeks or months and then vanish for months or years until: "Bam!". I know what a "Bam!" moment feels like.
The "Bam!" moment out of the blue, the prolonged pain at rest, and indeed the sometimes-right-sometimes-t-wave-flattening-ECGs are all consistent with my experience of MVA. But, you may suffer from something else and will have to go through a battery of tests, I am afraid.
I would say that everybody experiences heart pain differently and I don't think it necessarily significant that yours is in your left arm and jaw. Mine is mainly in my chest and shoulder but also can radiate into my left arm and jaw and, exceptionally, may appear in my back.
Of course, I don't know what is wrong with you, and you will have to go through the necessary tests. But, I wouldn't be surprised if you had microvascular angina. If so, you may face a battle to obtain diagnosis and may encounter doctors who try to dismiss your symptoms. I would urge you to take somebody with you on hospital visits etc to be your advocate who will argue your corner, if necessary. There is information on MVA on the BHF website:
There are a handful of consultants who specialise in the disease.
Since your GP seems to be supportive, I wonder if you could ask your GP to try prescribing a calcium channel blocker, for example diltiazem, to see if this relieves your symptoms, at least a bit. These drugs seem to be the normal first-line treatment for MVA.
I may be premature in flagging up the possibility of MVA at this early stage, since your cardiologist may diagnose something else in due course.
By the way, anxiety is confusing. Having frightening symptoms will make you anxious of course. And a cardiologist told me that, when the body doesn't work properly, it can react by producing adrenalin which in turns creates feelings of anxiety and its physical manifestations (rapid shallow breathing, sweating ….). In other words, anxiety can in part be a natural physiological response to a malfunctioning heart. Through the 10 years of intermittent illness that I suffered before diagnosis, I was told more than once that I was suffering panic attacks and/or anxiety.
I wish you success in obtaining diagnosis and treatment. And don't forget that you have many friends on this site eager to support you.
Thank you so much for your informative and caring response, I did actually mention to my cardiologist 7 years ago, could this be small vessel disease or Prizmetal but he just shrugged it off. I know on Monday I will have a stress echo test and if that proves normal I don’t know what to do, I’ve asked for an angiogram in the past and it’s been refused. I just know in my heart that it’s not anxiety causing it, I know I went through a lot when I was in heart failure but I pulled myself together and set up and online business and it helped with my anxiety, I’ve been great the last two years and just can’t understand how it can come back out the blue. On brisks walks I’m fine, I can run up stairs, these episodes are happening out the blue. I thank you so much for your response and will keep you all updated after Monday
Jonathan has given a very good view of his life with MVA.
I live with both MVA and vasospastic angina it took some time to diagnose.
I am fortunate to have access to leading experts and researchers into the condition. I see a Cardiology Professor who is researching into the condition.
You may need to be persistent. Do not let a Cardiologist ignore your pain.
I am unfortunately quite badly affected and I have just spent 8 days in CCU.
I have a written Admission Plan and the care I received was outstanding during this last admission.
It has taken me many years to achieve this outcome.
The problem is that Vasospastic and Microvascular angina are so poorly understood and recognised. Cardiologists tend to cover their lack of knowledge by pretending it doesn't exist.
I do have ECG changes minimal Troponin rises. My echo and MRI both normal.
I had an angiogram with acetylcholine which showed I had spasms in my large and small blood vessels.
Unfortunately this test is offered only in a few centres in the UK.
Thank you I will keep pushing but I’m always made to feel it’s anxiety because of the previous collapse I had from the heart failure, yes that did cause anxiety and it was very traumatic but I know when something isn’t right with my body, I cannot believe my Brain will be causing this burning heavy feeling in my left arm - especially out the blue to going about my daily activities. I was stuck with it for two years last time, it went away and I ended up believing myself it must have been anxiety, but it’s started up again for no reason. It’s daily, starts from when I just start walking around. Yes if I run up stairs or rush on the school run, it eases at bit
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