Undiagnosed Chest Pain

[SSP77]

Hi - I wondered if anyone on here has had any similar experiences to me? I’m a male in my late 30’s who up until Feb 2020 had never even thought about my heart. I’m a bit overweight (bmi 27) but have always been pretty fit, could easily run 10km, cycle all day and generally do what I wanted. My heart rate has always been quite low, around 55bpm. Then I had an episode where it felt like my heart stopped, I fell to the floor, didn’t pass out, but my heart rate shot up to 140 and an ambulance was called. Ecg and x rays were normal. This happened a few more times over the following 6 months, heart feels like it stops, then bang, off it races, shortness of breath, chest pain, dizziness - but ecg, X-ray, bloods at hospital show no issues.

Over the past year I’ve been to Papworth for mri, ct-angio, ecg stress test, ultrasound, 7 day holster ecg but nothing significant has been found. The worst they can find is ectopic beats, slight dilation of the left ventricle and a borderline Ejection Fraction of 50%.

They say that none of this should be causing the regular chest pain, fatigue, and spikes in heart rate that I am experiencing. They say I should be confident that my heart is in good health and there is nothing to worry about. But how can that be when these episodes are getting worse and I have more regular chest pain? Could they be missing something? My gp doesn’t help, just refers me back to Papworth and they say they’re not concerned.

I’m writing this at 3am after another night of being woken gasping for breath with chest pain and dizziness. None of it stacks up. Anyone else out there living with symptoms that can’t be diagnosed?

Thank you

[Kristin1812 Heart Star]

It must be very hard, at your young age, wondering what on earth is wrong, and getting no answers. But Papworth really is one of our best and most specialised heart hospitals. I’m hoping you may get a post from someone here who has had something similar, and has found something that helps.

I did just wonder if anxiety plays a role? Have you ever thought it might?

[SSP77 in reply to Kristin1812]

Thanks. I’m sure anxiety plays a part now as I’m constantly worried about when it is going to happen, but it wasn’t the trigger. It came out of the blue. Now I guess I’m worried as I’m not getting any answers but it’s still happening

[Kristin1812 Heart Star in reply to SSP77]

I can understand that. You don’t see anxiety as a cause, but you are worried now. It’s good that you are getting some posts here that seem to describe something a bit similar to yours, so I hope you can get some good ideas from them.

[SSP77 in reply to Kristin1812]

Yes. I think I need to be a bit more pushy now instead of waiting all the time for follow ups. I had the mri and ct as an emergency, the cardiologist booked it in within 3 days of seeing me but then took 8 weeks to respond with the results!

[Kristin1812 Heart Star in reply to SSP77]

Yes, good idea. If you’re worried, give the sec a ring. Nothing to be lost!

[SSP77]

Thanks. This sounds very similar to what I am experiencing. Resting heart rate seems to be getting lower even though I’m not exercising anymore, which makes no sense. I’ve spent days in bed after these episodes as well

[ListlessLimpet]

"woken gasping for breath"

I'm having similar but, I must say, you're other symptoms are more extreme than mine. I am of a similarly fit background (also from cycling) with a similarly low resting pulse. Significantly, I am older by some 20 years and so I can at least attribute some of my current state to 'wearing out' - one expects it with age. So for you, at a comparatively young age, I get the additional anxiety.

I'm an anxious person, always have been, but I wouldn't have thought my levels of anxiety would have significant knock on effects on my physical health - but tbh I can't say what effect a long-term anxiety might have, but it'd not surprise me if there was something.

I'm afraid I can't really offer any advice or help, I can only offer my empathy for your situation. I'm very early in my journey, in comparison to your own, and mine might yet find a speedy conclusion (I obviously hope so!) but I can share in that feeling of 'undiagnosed'. For me equally, my symptoms don't "stack up". In itself, it is worrying - the not knowing bit particularly. I feel that if some label or other can be applied to me, then at least I know what I'm dealing with and can take some course of action.

The only thing I can offer is to say that I know that things can look bad after a poor night's sleep - your state of health is understandably uppermost in your mind. Get yourself out for a walk, get some lung fulls of good clean and and try and clear your mind. I genuinely believe health care, and more particularly diagnosis, is not always a straight forward business - it's perhaps only when we're on the blunt end of it that we fully appreciate that.

People are doing the best they can for you, you have to trust in that.

[SSP77 in reply to ListlessLimpet]

Thanks.

[SSP77]

Were you diagnosed with Sick Sinus? Do you have a diagnosis and anyway of managing your own symptoms?

[SSP77]

Wow, sounds like you’ve had lots of things explained to you over the years. I’ve had nothing explained so far. I just get copied in to letters that go from the cardiologist to my gp giving the results of tests but no explanation of any of it. I’ve finally got a face to face consultation at Papworth, so maybe I’ll know a bit more in October. Thanks for replying, it helps me with questions that I’ll have for the doc.

[berlyrash]

Dear SSP77, sorry to hear you're getting bounced back and forth. I've been doing a lot of reading on prinzmetal/variant angina/vasospasm and microvascular angina. My cardiologist will be conducting an angiogram for a definitive diagnosis. What you're describing sounds like the variant angina - which is also called prinzmetal angina or prinzmetal vasospasm. this link is to a report on a study conducted specifically for both of these conditions. and is something you could share with your gp and cardiologist. there's a lot of info online, but your doctors will respond better to a medical study.sciencedirect.com/science/a...

My symptoms started a couple of yrs ago, and i was diagnosed with viral myocarditis. At the time, i lived in east africa. I had to return to the US for medical care b/c it wasn't improving. I've been back in the US for about 8 months, and the good news is that the myocarditis has resolved. but it was either masking other conditions or has caused. I hope you find answers. I was put on medication that made an immediate improvement. but my activity levels are very limited.

[Milkfairy Heart Star in reply to berlyrash]

HelloBerlyrash

Welcome to the forum

I have lived with coronary vasospastic angina for over 9 years

I was diagnosed by an angiogram with acetylcholine.

Here in the UK there are several BHF funded teams researching microvascular dysfunction and coronary vasospasms.

The BHF website has this information about microvascular and vasospastic angina.

bhf.org.uk/informationsuppo...

bhf.org.uk/informationsuppo...

The terms Prinzmetal/ variant angina are not used as much in the UK .

My Cardiologist and the researchers into the condition tend to use coronary vasospasms, vasospastic angina or coronary artery spasms.

Other terms you'll see used are Angina non obstructed coronary arteries ANOCA or Ischaemia non obstructive coronary arteries INOCA .

You maybe interested in this website. It was written and created by 4 patients. The group is supported by some of the world leading expert Cardiologists in this area of Cardiology.

internationalheartspasmsall...

[Carpenter12]

Hi SSP77 I see your post was 3 years ago. But after reading I couldn’t help but reply in the hope for a response.

I am also in my early 30s and am experiencing the same symptoms. Seeing as we’re 3 years down the line from your original post, did you ever get to the bottom of it or get answers?

This is something I am dealing with at the moment but also seem to be going around in circles with GP and cardiologist.

[Pappa7]

Hi Carpenter. Well fortunately I am still alive but still living with symptoms that the doctors aren’t interested in. Their tests have shown that I have a right bundle branch block and myocardial bridging, which, having read the potential symptoms of both, would account for how I often feel but there are no remedies that I can be offered for a solution. I feel faint if I exercise too much or stand up for too long, so the lack of exercise has now impacted on my general fitness. I’ve even gone out of the nhs and gone private with all of my results and can still be offered nothing as apparently the issues are ‘not significant enough’. I therefore wait for the day that one of my episodes is ‘the final one’. So sorry that I can’t offer a better update.

[Pappa7 in reply to Pappa7]

My userid changed. Not sure why. I must have forgotten I had an account and setup another one at some point. SSP77 is now Papa7 it seems.