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Trying to make sense

Captain_Birdseye profile image

Short background, edited to clarify - 2 months ago exactly I ended up in A&E with chest pains... blood tests showed elevated troponin levels so was treated for a heart attack (although they were fairly certain this wasn'tthe cause of my symptoms) and monitored for 72 hours. ECGs and echo all clear. Sent home with standard cocktail of medicines and rest. Suspected myocarditis diagnosed and followed up with a cardiac CT and MRI a month ago.

The results have come back (secretary read the letter out to me over the phone)and I'm really pleased to say that they are reporting that heart function is good, structure is good, very little scarring and arteries look fine. I've to come off all meds after talking to GP, still need to rest for another month. So confirmed no heart attack, most likely myocarditis.

Obviously this is great news... but why would I still be getting chest pains and pins and needles if there's nothing showing on the scans? Is it just a case of riding it out? Is that normal for inflammation?

I feel like I'm a fraud... but the pain, while not excruciating, is very real. It doesn't respond to GTN, and paracetamol barely touches it.

It's near impossible to speak to the cardiologist, and my GP has admitted previously that she isn't too knowledgeable in this area (I think this is normal)

Sorry for the rant, this is running laps in my head!

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Captain_Birdseye
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13 Replies

Could you get your gp to contact your cardiologist for you..

Captain_Birdseye profile image
Captain_Birdseye in reply to

I'm hoping so, my appointment is in a few days 😊 it can take a bit of time to hear back just now it seems.

in reply toCaptain_Birdseye

They seem to be very busy these days, hopefully you can get it all sorted out in a few days.

Oaks6 profile image
Oaks6

I had cardio rehab after a heart attack. The team are very helpful and have many useful contacts and information about heart problems. They aren’t cardiologists but have a lot of cardio related experience.

Captain_Birdseye profile image
Captain_Birdseye in reply toOaks6

That's great you were able to use this service, I've heard people find it invaluable 😊

MountainGoat52 profile image
MountainGoat52

Have you had an explanation as to why you had a heart attack when your arteries are clear? After my event (indeed well after, 14 months and I'd had a bypass op in the meantime) I was evaluated by pathology in my local hospital to find the cause of my heart attack. To me, you don't seem to have had a proper diagnosis. I would certainly discuss matters with your GP and try to get a referral for your ongoing problems.

Captain_Birdseye profile image
Captain_Birdseye in reply toMountainGoat52

I haven't had a heart attack (gone back and edited to clarify that) , I was treated for one under the ACS protocol until I had a diagnosis. They suspected myocarditis and following the scans I'm under the impression they feel this is confirmed.

My worry is that I still have the symptoms of inflammation, but there's nothing showing on the scans, I'm not sure if that's normal? Or if, as you say, I've not had a proper diagnosis.

MountainGoat52 profile image
MountainGoat52 in reply toCaptain_Birdseye

Understood - me reading too much into your post. 😀

I think I'd be pushing for a consultation as it is obvious you cannot go on as you are. Hopefully your GP will be able to facilitate this.

HHH2017 profile image
HHH2017

Hi Captain Birdseye, great name by the way! I had Myocarditis & Pericarditis nearly 5 years ago. You will find lots of useful threads on here if you search under myocarditis. It can take some months if not years to recover, depending how severe the virus & attack was. Mine actually did cause 2 heart attacks.Something to ask is'Is your heart still enlarged?'

If the heart is enlarged/inflamed it obviously makes it hard to work properly and will cause pain etc. Resting will help it return to normal. The heart is a muscle and like any muscle going through a major trauma it needs time to allow it to heal.

Do take things very easy & rest LOTS. We have all found, we have good days then over do it 🤦🏽‍♀️And pay for it after!!! Pace yourself and be kind to your heart is my best advice. I also found cardiac rehab invaluable but I was so ill I wasn't allowed to start until at least a year post attack. Sounds like you have been well investigated & monitored & discharged quickly so hopefully the road to recovery will be just a few months. Wishing you well.

Captain_Birdseye profile image
Captain_Birdseye in reply toHHH2017

Thanks for the response! So many related posts have been removed due to that which can not be named, so it's a bit patchy. I've just been told there are no GP appointments available until October as they have sickness... oh dear!

That does seem to be the only consistent advice is plenty of rest, so I'm trying to be stricter with my work... they've generally been supportive of my phased return but there's a new manager come in who doesn't seem to know the meaning of medical leave 😅 Thankfully I'm not one for running marathons, but I'd like to do some rehab when more up to it!

Sorry to hear you suffered so much with it, I never realised it could cause HA... but it sounds like you're hopefully on the mend?

fishonabike profile image
fishonabike

i agree with HHH2017 - recovery from Myocarditis can be very slow and the pain can persist - your heart muscle has been infected/inflamed and it takes time for this to resolve - our hearts have to keep working 24/7 so the muscle cannot rest for periods in the same way as other muscles - so you have to make a conscious effort to be less active and make fewer demands on your heart

most people are not warned that infection/inflammation can take a long time to reslove, so we expect to bounce back quickly - also most post heart-related advice encourages a rapid return to activity and excercise - this is not the best treatment for myocarditis

please check out info aimed at this condition - you should find it helpful and reassuring : for example - myocarditisfoundation.org/e...

Captain_Birdseye profile image
Captain_Birdseye in reply tofishonabike

Thank you for the response and the link, that's really useful - and reassuring to have both yourself and HHH2017 share your experiences!

I must learn to be patient... and be stricter with work, so the resting happens 😊

fishonabike profile image
fishonabike

i don't actually have personal experience of it, but as an ex-nurse i find that people are often not given realistic advice about recovery - these days the emphasis is heavily on getting back into action - the concept of convalescence seems to have disappeared - sometimes time and being gentle with yourself are a really helpful form of treatment! 😊

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