30yo - Myocarditis - Weird Heart Symptoms - Looking for help!

[skheart]

Hi all,

This is quite an essay but I would be super appreciative if anyone can help/shed some light on what I could possibly be asking my doctors to do for me on this matter as I’m very scared of day to day life right now, and I feel like I’m not really being helped as much as I could be.

I’ve had that thing that shares the same name as a common beer 3 times, and after the last time in December 2022 I suddenly suffered some extremely worrying heart issues.

 - very hard heart beats constantly

- palpitations

- extremely irregular heartbeat (like AFib style)

- random spikes even at resting from 120

- 140bpm (Apple Watch recorded the patterns)

- pressure on left side of chest permanently (even now a year later it’s still there)

- suddenly had consistently high blood pressure (150+/97+)

I wasn’t aware what was going on inside, and after being rushed to hospital over 10 times in the space of 2 weeks, no on the spot ecg gave me any indication that anything was wrong. 

I went through an extremely long uphill battle with my GP, and many misdiagnosis’s - I was initially put on diazepam back in Jan 2022, then moved to sertraline. My BP measurements were consistently a minimum 150/97 on a good day, to 170/104 on a bad day, and it was all being put down to “you’re stressed, anxious or suffering from mental health issues” (wild). 

This was affecting my work life, my social life, my life at home - everything, and unfortunately it still is. After doing my own research and dealing with random super high spikes of heart rate ranging from 120-140bpm resting, severely hard palpitations which happened all day everyday and other things what seem like AFib.

I eventually managed to get a 24hr ecg fitted, and an echocardiogram. Unfortunately these referrals came in 4 months down the line, I was still dealing with all the symptoms above until then too.

The results came back and all that was noticed was tachycardia and ectopic beats - I still felt horrendous, unable to do any form of exercise, super tired everyday for no reason even after sleep, insanely hard heart beat feelings, weird sensation in my left arm at random times in the day which was accompanied by arrhythmia and irregular heartbeats and so on. So I was left feeling v cut up about it all, as I put so much on these tests giving me the answers to the issues with my heart, and a solution to getting back to normal.

Fast forward to September, and so many back and forth blood tests, with a different GP every time repeating my whole story and issues to a new person, and then receiving a different opinion. They told me I should get my heart ‘out my head’ cause it’s obviously fine as my ecg and echo revealed just tachy and ectopic beats. But I didn’t feel fine, in fact I felt so far from it - it’s unreal.

To my surprise my cardiology referral with the NHS was cancelled due to those results, according to them ‘there’s no reason to look into the heart as the results weren’t troubling’. Even though I couldn’t run without the pain/tightness/pressure getting worse.

Sometimes my heart rate would feel like it’s suddenly stuck at 120 and wouldn’t relax or come down and would beat super off pattern like fluttering (assuming AFib from what I’ve learnt). 

Since they wouldn’t take it any further, and having dealt with all this hell for nearly a year I had to bite the bullet and pay for a private MRI which I got about 3 days after asking for one. 

So it looks like they were unable to see from the ecg/echo what the mri found - the specialist cardiologist I went through explained to me that It looked like I had myocarditis but i was on the other side of it, there was some heart inflammation still at the time of the MRI (September) and I had an ejection fraction of 52 or 54%, some heart scarring from it, and an slightly thickened mid lateral wall. But he ‘stressed’ that it wasn’t enough to affect the function of the heart and he’s sure I’ll make a good recovery, and I should implement some exercise (walking). 

I really need help, because I don’t know what else I can do now. I’m on 5mg of ramipril, 60mg of propanolol and it’s now over a year since I first had all these issues. I’ve never had issues with my heart before, as far as I’m aware - been a regular on and off gym goer, lived a very normal life until now.

 I helped my dad who is 70 moved house a few weeks ago, and after helping for a day my the pressure I have in my heart/left side of my chest went from consistently tight to super super tight for about 2 weeks, then calmed back down to tight but not extreme.

I was also a bit late for work a couple days ago and sprinted about 20/30m at a fast pace, I didn’t make it to the door and actually had an awful feeling in my chest. My heart was racing like I’ve just done a 200m full pelt sprint, and then it wouldn’t slow down and was beating super out of a normal pattern, to which I then started panicking because I didn’t know what was going on, no breath work would sort it out and even though I got my breath back, my heart was still going at 120+ and beating completely out of beat for over 3 hours, it then randomly just chilled out and went back to what felt like normal. I even get out of breath walking and talking, it feels like a bit of a light workout to do both.

In summary, my blood pressure is now in a much better range after being on 5mg ramipril for around 3 months, around 130-140 D / 75-85 S. the propanolol did nothing for my blood pressure but I think it might have helped my heart rate a bit as resting has been much better than before, now rests at 55-70 on average, aside the recent random AFib style spikes. but I think I still have myocarditis, it’s been over a year now, has anyone had it this long or longer? I still can’t exercise (run, lift weights etc).

Being completely honest, I’m super worried that I might just drop and that’s the end - it feels like everyday im on egg shells in my own body and I don’t know what is going to be the last thing I do, it’s always on the forefront of my mind but when I suddenly feel more rough than usual with heart symptoms I’m feeling like it’s potentially the end. 

It seems like my GP won’t do anything else, I called a few weeks ago after I helped my dad move and explained that the symptoms got worse after this and he said to me ‘what do you want me to do about it?’. Then there’s the private consultant, but he’s £££ every time I choose to speak to him for advice on what’s going on after I’ve had a really bad episode of something, like increased tightness… and he just sends my GP a letter suggesting a referral to a cardiologist, but it seems like nothing goes further.

I’m lost on what to do. If I’m getting better? I don’t feel like I am. And I’m not getting anymore investigations or answers… Are there any medications I should be getting to help me recover? Will my ejection fraction % get better with exercise? I am just getting no answers, I don’t know what to do to get better or why it’s taking so long?

[Pilgrim2]

Hello SKheart,Firstly you have made a good choice joining the forum, there are lots of knowledgeable and experienced people on here that are happy to offer advice where they can.

Much of your story felt very familiar to me. I was fit and healthy up until Summer 21 when suddenly one day I had fast, thumping heart rate with palpitations and some pains. Of course the initial thought was heart attack. But investigations only showed high blood pressure. My GP set about treating that even though I was concerned it came on so suddenly. After some back and forth the GP said there was nothing more they could do and I would need to see a specialist consultant, currently 9 month wait! I then also tried the private route. But they still concluded just high blood pressure. It was now 6 months on and I had issues undertaking any sudden activity (a few flights of stairs I was gasping) and I generally got much more tired doing say a couple hours gardening. I knew something wasn't right as I spoke to people with high blood pressure and after taking tablets they felt normal.

In the end I decided to go see the top experts at Papworth. After a few tests they discovered I had a leaking Mitral valve and that caused all my symptoms. My god what a relief having a proper diagnosis that made sense!

Sorry, after my lengthy reply, my suggestion is to keep pushing for a diagnosis. If you can afford to have some tests privately its worth it, if not you can still see the same consultants on the NHS, it just takes alot longer.

They will tell you that worrying about your heart will make it worse and I'm sure there is some truth, but I do believe we know when something isn't right. When you get a diagnosis that makes sense you can live with it and start to make plans. Keep pushing and best of luck.

[skheart in reply to Pilgrim2]

thanks so much for your response and detailed experiences, it all helps with suggestions and directions to go for me. Sorry to hear you’ve also gone through a real tough time - the unknown is a very scary place to be.

If you don’t mind - can I ask if you had did all the same tests as me? (24hr ecg, echo, blood tests, chest X-ray, mri?)

[Pilgrim2 in reply to skheart]

Hi, yes I had all those tests. I must have had about a dozen single ECGs and they never picked up anything. The 24hour one picked up some ectopic beats and tachycardia but nothing conclusive. It was only my 2nd echocardiogram done at Papworth that picked up the leaking heart valve. I'm now 5 weeks post surgery and fixed!

[skheart in reply to Pilgrim2]

Wow.. that’s crazy. I will continue to push, just contacted papworth to see how to go about getting in there too. Thanks so much for your input, and happy to hear you’ve made a recovery!

[skheart in reply to Pilgrim2]

sorry to pest on this, can I ask if there was anything specific that happened during that 2nd echocardiogram?

For example:

Were you under exertion or just as usual like the first one?

Were you on medication like ramipril/propanolol at the time of the echo?

I was also wondering if because I’m on ramipril and propanolol it’s potentially helping mask the problems at lower exertion than it would if I was off them.

I was referred to an endocrinologist to look at 2nd degree high blood pressure about 3 weeks ago. He told me to come off the rami and prop because it would skew the results of the blood tests and gave me doxazosin to replace the above for 4 weeks, but after 24hrs off them I felt horrendous so couldn’t carry on and went straight back on the rami and prop.

I’m mentioning this because I’m wondering if you had to come off any meds in order to reveal what was going during the 2nd echo or they just happened to see the issue cause it’s a heart specialist hospital

[Pilgrim2 in reply to skheart]

Hi, for the 2nd echocardio I wasn't asked to stop any meds. I was on Rampiril and statins but no beta blockers. I feel the big difference was my first echo was done at a provincial clinic, I am sure they were qualified but I didn't get a feeling of expertise. The second one I booked privately with Dr Madalina Garbi at Papworth (a complex echocardiogram). From the start she gave much more explanation of what we were looking at and what she could see and was directing the consultant moving the sensor to get all the data she needed. At the end she went through the pictures and data again then declared she could see I had a faulty Mitral valve - a Barlow's valve. And this would give me symptoms of high blood pressure, struggle on exertion, chest pains, tiredness and potential for palpitations - exactly what I had been experiencing for past 8 months!If it's appropriate to make any recommendations on here, I would absolutely recommend an echo with her. It cost me about £300, best money I ever spent. It may not resolve or diagnose everyone's problems but I think it's a top class echo and at least it crosses off anything visible on these from the potential list?

[skheart in reply to Pilgrim2]

thank you for all this, much appreciated - and I fully agree. I’ll try start the process with them today

[AS90]

This is exactly what happened to me. Months of back and to with the GP and trips to A&E. Felt like I was dying. They put me on antidepressants and said it was anxiety. Finally a hospital GP that was supposed to prescribe me a sleeping pill for the night took a look at my ECG read out (that A&E had just said was fine) and sent me straight up stairs to the heart ward. They took one look at it and admitted me.

I had heart failure with an EF of 35.

They initially put me on a beta blocker and aspirin as I was already on ramipril for high blood pressure. Then I was given a statin, dapi, and the fantastic Entresto. 8 months later I’m up to an EF of 44 and feel much, much better.

If they won’t listen to you, go private. An initial consultation isn’t a that much.

Good luck!

[Yumz199725 in reply to AS90]

Hi skheart.Just read your post sounds like you have been through alot. I don't have experience with myocarditis but I am i a similar situation with the anxiety of no body taking me seriously I have mixed valve disease and I have noticed I have been getting very short of breath doing simple every day things yesterday was terrible walking to the GP and I was even out of breath talking to him I had an ecg done lost count how many I've had over the years always shows up as normal but with my history of my health hardly the case! Anyway I'm having blood test done next Tuesday I am convinced it's heart related I've looked up on reliable websites about it alot and all the symptoms Im having points to it being my leaky and narrow valve but my cardiologist won't take me seriously just keeps saying are you dehydrated or stressed 😭😢. Wish I could go private.

Anyway sorry for the long message hope you can get the answers you deserve and get a proper diagnosis.

Take care ❤️

[skheart in reply to Yumz199725]

hi mate, again I can’t believe I’m reading this really. Insane how these things seem to happen so often to people. It’s awful to hear and I can understand how you feel, in a way.

The only problem with self diagnosing online is because all these symptoms seemed to be shared with an infinite amount of problems.. it’s just so hard to pinpoint what one it could be. i hope you get the results you want and you turn out to be fine! Good luck!

[skheart in reply to AS90]

Hi mate, sorry to hear this - thank you for sharing your situation. I’m glad your EF has increased and you feel better after all that agg. Can’t believe these situations happen to so many people!

[LadyZ13]

Chipping in here just with another experience and to say I'm so sorry for all those who have been shuffled around the system and come up against so much unhelpfulness or been dismissed and told to chill out.I waited in A&E 16 hours for a bed on a cardiac ward. They couldn't tell me what might be wrong with my heart, but they did want to monitor it. But no bed became available and at 4am surrounded by the bedlam of the overstretched A&E dept I signed the 'you might die if you leave without treatment' waiver and went home to sleep. The next day we called BUPA. I saw a private cardiologist the following week who ran an echo and found the ACHD. The consultation was £300 and it set me off on a path of tests and referrals that have given me a clear diagnosis within 3 months. That said, I was happier not knowing I had a hole in my heart and need OHS, but I guess catching it now is miles better than realising the issue in 20 years when I'm in HF.

I feel very lucky to have been able to go private and know it's not in many people's reach, but if it's an option to get a diagnosis, it's definitely worth exploring.

[Gc39]

how are you lately Skheart? Are you feeling any better ? I have been having similar things happen too. Had an mri yesterday

[skheart in reply to Gc39]

No, unfortunately not any better. Still Living with strange chest pains and tightness 24/7, very high blood pressure (the medication is not bringing it down at all, was on 2.5mg ramipril, I’m now on 7.5mg and still have bp readings 150-160+/85-100. Sometimes it drops to a good reading, but it’s never consistently low, 9/10 high readings) short breath and just a general odd feeling inside me all the time.

I have had stage 2 hypertension since December 2021, as of January 2023 I’ve had episodes of atrial fibrillation sometimes after exertion. Finally I managed to capture it on an Apple Watch, sent it to the private cardiologist I was getting the scans from to look at and he made the decision to get me off propanolol and put my on bisoprolol - which has felt like it’s actually doing something over the propanolol, haven’t had many weird heart palps since taking it - but all the other symptoms are still there in full force .

The nhs has taken SO long to get any progress with it, I’m only just having an NHS cardiologist look at what’s going on tomorrow, it’s taken that long on the NHS for a cardiologist to investigate.. can you believe…!

After some back and forth, they are also looking into secondary causes April next month after the previous suggestion of coming off my BP meds to check certain things couldn’t happen cause I felt so bad. Seems like it took them months to just get around to calling me back in for another suggestion, crazy…

Unsure what to say but maybe my exp will shed some light on what you can ask for, or push to get. I believe I need to get a stress MRI and stress ECHO to reveal what is happening over the normal one I had previously, cause when I’m relaxing and on meds it’s not as apparent overall. When I exercise my heart goes crazy, like it’s overworking for the amount of exertion.

[Gc39]

I’ve messaged you

[skheart]

just an update for anyone that ends up in a similar situation.

I’ve finally had an NHS cardiologist check my ‘story’ after nearly 2 years of issues since getting c. Just a reminder, I am a recently 30yo, non smoker who eats relatively healthy, (did) drink on weekends, was generally fit overall and engaged in a fair amount of exercise and fitness, and also has never had heart issues - to someone who went into atrial fibrillation for 4 hours after having c cause I ran from one terminal in an airport to another to catch my flight, amongst everything else that happened I wrote above.

The cardiologist tore apart my private mri scans and said they didn’t look for a number of things that they should have - will list these next week when I’m back home. Been trying to just get on with my life and not let these daily super high blood pressure readings consume me and my mental health.

He’s giving me a stress test (which I suggested from the start as exercise seems to make my heart go weird, even more so prior to taking bisoprolol) another MRI to look at a number of things, one including these microscopic veins in the heart which supposedly might be the answer to my 24/7 tight chest uncomfort - but all to be confirmed. And also a 24hr blood pressure reader… oh and a 7 day ecg.

Will let you know the outcomes, he said if nothing is found then it’s nothing cardio related….. I’m lost, even with all this evidence that something is wrong, they are so quick to avoid finding the problem, and providing a fix!

Funny story, when I walked into his office at the hospital he said to me “so *first name*, what’s making you think you’re going to die” amazing really isn’t it, these people are meant to be helping and resolving the issues we have.

[skheart]

Update.

I had a 24hr blood pressure machine recently, which ended up being kept over the weekend so I managed to get about 2.5 days worth of BP readings using this monitor that is worth about 2k, instead of the 20£ one they use in the surgery and the one I’ve got at home (which is the same brand and models monitor).

My home and surgery readings tie together, both indicate I have stage 2 hypertension. I’ve basically never had a reading below 150/90 in the last 2 years, I even got taken to a&e after calling 999 because the paramedics recorded my BP at home at 170/110+. I’ve also done about 7 or 8, 2 week long, daily BP readings in order to have my BP investigated. What was super strange was this expensive monitor gave me most readings of 90/50 which was insane to see, so my problem now is was the machine calibrated correctly? Seems crazy that my BP would be so low on this machine I used, but never ever recorded that low on either the surgery monitor, my monitor, the paramedics monitor nor at the hospital on the many times I’ve been over this period.

I debated the point I had here with the long c clinic nurse that is helping me, as they know the lengths I’ve been through proving everything that’s happened over this duration. Unfortunately the cardiologist dealing with me has done what I was concerned about, and nullified my blood pressure issue due to this small and unexplained anomaly the weekend I had this 24hr monitor. Regardless of the x amount of weeks data that’s been provided proving my BP is super high.

The stress and confusion continues…

I also got told I missed one of my important tests by letter, but I was never informed I had an appointment in the first place. So I’ve been put BACK on the waiting list after many months of waiting already.

Love it.