Hi everyone. Back at the end of November I woke at 3 in the morning with a feeling that my heart was in spasm, I was sweating, felt restricted in my breath but if I tried to breathe I could take deep breath so wasn’t my lungs. I felt sick and like I was going to pass out but didn’t. The spasms would last a while, would ease off and then come back with a vengeance. This carried on for a while and in the end I decided to go to A&E on the way I developed burping that was maybe 20 times in a minute. By the time I got to A&E the episodes had stopped and although I still felt rough the main issue has gone. I had a clear ecg, bloods and X-ray and was sent home to explore with my GP. For a week after my chest ached I felt fatigued and brain fogged.
Since then I’ve had 4 more episodes of varying degrees over a 5 week period (plus been to A&E twice more) plus intermittent (lasting a couple of days and then going away) feeling of heaviness around my heart across my chest to the top of my biceps, a feeling of slight choking, pressure up through my neck and into my head. Also feel light headed. In between I can feel completely fine. Apart from when I am feeling really bad, none of this seems to be triggered by exercise and all episodes bar one have been at rest either in the night or early morning.
I’ve had a clear echocardiogram and 7 day heart monitor (with no symptoms other that a palpitation during the 7 day). They are sending me a 2 month event monitor. However the cardiologist has said that I don’t have any type of angina based on the two tests mentioned above and being low risk (female 36 with no family history and a good lifestyle, etc) but seems to be basing this on the unlikelihood of me having clogged arteries.
Having looked at the BHF website I am convinced that variant angina shouldn’t be ruled out yet but they were quite dismissive. I should add that the day before I had my first ‘episode’ I’d been in the sea and had got quite cold after.
So I’m not looking for diagnosis here but I am just wondering a) whether anyone has had the symptoms above and has been diagnosed with variant angina, despite the ecg being fine when you don’t have symptoms, also similar risk factors. b) how do I approach the GP to say I’m not happy with the diagnosis (or lack of) and insist on further tests (thinking angiogram). C) any other suggestions please let me know.
I should also add that I’ve had a mild fever on and off which has been broadly correlated with when I have had these episodes or the other pressure feelings which doesn’t seem to fit anything (and I’ve had 2 negative Covid tests in December)
Sorry for the long post!!
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Thank you Milkfairy, any advice on how to approach the GP, given the cardiologist has been dismissive?
By specialist do you mean an angina specialist or just a heart specialist? I’m considering going private but know I probably need to push the GP first.
Can you ask to be referred to the Liverpool Heart and Chest Hospital?
Or if you live in south Wales there is a team at John Radcliffe hospital in Oxford who use Cardiac MRIs to diagnose some types of Microvascular angina.
Unfortunately vasospastic and microvascular angina are often overlooked and under recognised and you may need to travel to see a specialist.
I suggest you keep a diary of your symptoms. See if there is any pattern to your symptoms and triggers such as the cold, exercise or stress. Print out the information from BHF website and go back and discuss them with your GP.
Vasospastic angina tends to cause very severe episodes of prolonged chest pain in clusters often in the night between midnight and 6am.
It took me a while to get my diagnosis and find a Cardiologist who understands vasospastic angina.
I have lived with vasospastic angina for nearly 9 years.
Thank you Milkfairy. Happy to travel so will see what I can do. I’ve been keeping a symptom diary but haven’t noticed any particular triggers (other than the first time it happened) but will keep it up 👍🏼
Reading your story resonated with me. What you describe is very similar to what happens to me when I get attacks. It was so bad in October that I ended up in hospital for a week. I have clear coronary arteries and was diagnosed with Coronary Artery Spasms and had previously been under a Refractory Angina clinic in Bradford for Microvascular Angina.Definitely, go back to your GP and ask for a referral to see a Specialist in this Angina.
My Consultant in Bradford and the clinic has a website with lots of information. I’m not sure, but I think he does private appointments. My heart has still not settled down but has improved with his help and trying different combinations of medication.
I read about another Consultant in London who is a Professor specialising in this. Go onto You Tube and check his videos out.
It will get better, you just need to get the right help.
There is also a Refractory angina centre at Broad Green in Liverpool.
The only way to confirm whether a person has Vasospastic angina is by using a chemical such as acetylcholine during an angiogram to provoke coronary artery spasms.
This testing is carried out in only a few places Golden Jubilee Hospital in Glasgow and St Thomas's hospital in London.
The Bradford Refractory angina centre does not carry out any invasive testing such as angiograms.
I have lived with Refractory vasospastic angina for nearly 9 years and also need to be admitted to hospital for treatment with an IV GTN infusion from time to time.
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Your description of your symptoms matches mine exactly when I’m having a severe attack, the nausea and feeling that you are going to pass out isn’t something everyone feels during an attack. You do need to speak to someone with knowledge/experience of Vasospasms. Good Luck..
I get similar symptoms (no burping though) when I have episodes of AF, plus diarrhoea. After a clear angiogram I was diagnosed with ‘coronary artery spasm’. Some years later I had chest pain with an episode of fast arrhythmia, troponin test indicated an MI but angiogram didn’t show a blockage so confirmed coronary artery spasm. I take diltiazem which seems to help.
Originally I was told this tends to affect ‘ladies of a certain age’ as it is linked to hormones. Obviously that doesn’t fit you unless there is a problem with your female hormones. This may be the reason why your suspicions are being dismissed. Have you been tested for early menopause or cystic ovary syndrome?
I agree that further investigation is necessary, best wishes 💜
Put your foot down and insist on an angiogram!!!! Last roughly the same thing happened to me. Had loads of tests after ending up in A&E 3 times!!!! They referred me to a Cardiologist and he did more tests. I was under him for 6 months!!! He signed me off and said there was nothing wrong with me ...3 weeks later I had u heart attacks in the period of 4 days. Had to have 2 stents fitted and they all it would have taken was the cardiologist to give me an angiogram to see that my arteries weren't functioning properly. My main artery was 90% blocked and the surgeon said I was damn lucky!!! ..and the thing is because the first cardiologist said i was fine, I went on holiday so all this happened abroad and it cost me a good chunk of my life savings, I had to pay for all my treatment and got stuck abroad for months!!!!!
You have just described what I have been feeling for over a month. Everything including the burping is exactly what is happening with me. Last night I woke at 4am with my whole chest in a spasm. I did the breathing exercise 4 7 8 and it eased but the leaden feeling in my chest for two days along with the spasming is awful. I almost called an ambulance twice but sat it out. The nitro spray doesn't seem to help. I was in bed all day yesterday I felt so ill. The only thing that I could link it to was the statins I take every night. Last week I got one stuck in my throat and decided to break them in half. That led to the most awful symptoms similar to the description of what you describe so I almost decided to give them up. I can't seem to get any help from Papworth as they are swamped with covid patients and not doing any routine stuff. I'm so scared of the spasms I'm now waiting for the doctor to call me back. What he can do I don't know but the comments above are so informative I'm going to ask about the symptoms now. Perfect description that I'm glad I read this morning.
Good luck Flummoxedlou. Let me know how it goes. Whenever I mention the burping it seems to be dismissed as nothing so glad to know someone else is getting it. I spoke to a cardiac nurse at BHF this morning too to give me confidence with speaking to the GP. I’m going to fill in an econsult so I can get it all down.
I actually mentioned the burping to my GP three weeks ago and he upped my stomach tablets Lanzaprol to double and it seemed to help but since I went back to normal dose the burping has returned. Its so awful as I can't stop! Even if I drop the statins I think the shivering heart will continue and I need the statins. I'm just constantly scared out of my wits lately, even though I made what seemed to be a rapid recovery from my SCA but I have a lovely support worker in rehab who is talking me down from the ceiling each week. Good luck to you too.
I have been at the hospital all afternoon - sent by my GP who actually does take me seriously - and my bloods, x ray and ECG all came out fine - no heart attacks and the diagnosis was actually that I'm still suffering side effects, most likely from the Statins and that the burping is also a side effect. This is going to be reviewed by my GP. The consultant believes that the spasms are the muscle repairing itself and not a form of variant angina however, she was not a heart specialist so I will ask my rehab team to refer me back to Papworth to a heart specialist at the earliest time when they are clearing their covid patients. It was very reassuring to be at the hospital and I may sleep better tonight. I have been told I can up the dose of my Lanaprol but only a few days at a time. Worth the effort of going and speaking to them.
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