Think I'm just starting out... Heart Inflammation/Myocarditis

[Captain_Birdseye]

Hi all,

I've replied to a couple of posts so far but not actually written one myself. I'm not usually one for writing spiels but I'm wondering if it might be cathartic for me, and maybe someone can offer more insight, or get some from this. This seems to be a lovely, supporting space from what I've read so far.

I'd had chest pains about 3 months previous, but it wasn't like this - Was diagnosed with work related stress and they went away.

My story so far... about 5 weeks ago I (34 yo, female) had recently returned from a lovely, relaxing trip abroad with my partner. I was sitting on the sofa when I felt an awful pain in my chest, lasting for about 5-10 mins, and a little pain in my left jaw. I initially put it down to indigestion, but I had an odd feeling, like I knew something wasn't right. I then got pins and needles down my left arm, which lasted for a few hours, followed by a headache. I put this down to a migraine (only ever had one before, but presented sort of similar). When the headache went, the pins and needles came back. It was pretty late at night so I thought I'd sleep it off - however it was still there in the morning. So I headed to A&E.

When I got to hospital, they ran an ECG (all fine), was checked over for various things and they took some bloods from me with the intention that if they were all clear I could head home. Unfortunately, my troponin levels were elevated (over 300) so I was kept in. They told me it was unlikely it had been a heart attack because of my age and otherwise good health, they suspected inflammation - however I would be treated for a HA anyway while they assessed me.

I was in hospital for 4 days - hooked up to telemetry the whole time - nothing showed up. Had several ECGs - all fine. Had other blood tests including D-Dimer - all clear,, although my cholesterol was pretty high so I'm being screened for FH. Had an echo - was told all was fine with this as well. So things are pointing to myocarditis. They tried to perform a CT Angio, but my viens did not cooperate. As everything else was looking ok, despite still having some discomfort, I was discharged and the CT and MRI to be arranged as an out patient. I was put on blood thinners, a statin, an anti inflammatory, ACE inhibitor (ramipril) and everyone's favourite - Bisoprolol!

As I was still having chest pains, and I hadn't been given much advice (except no exertion and don't drive for a month) - I called my GP. He had looked over my hospital notes already and he sorted my fit note (2 weeks initially) - and advised that this could take 3-6 months to clear up so I couldn't expect symptoms to disappear in a few days... fair enough, I'm not known for my patience at the best of times. Of course I then tested positive for that which must not be named - but this has cleared up now thankfully!

I continue to have the chest pains every day - most of the time it's a dull ache, and sometimes I feel a flare up (bit like a squeeze almost) - but this doesn't normally last long. What bothers me most is the pins and needles/pain down my arm and occasionally to my face.

When I started to also get lightheaded about 10 days ago and it didn't shift, I panicked a bit and went back to A&E (never again on a Saturday night) to be told that my troponin levels were non detectable - so no more heart damage (yay!) but no other explanation. Again, my GP checked me out and seemed to think everything looked ok as well, but lowered my dose of Ramipril to see if it helped (also had a dry cough) - which it has so far. My blood pressure had gotten quite low for me, it's still a little low, but I'm no longer lightheaded.

I've noticed that the pins and needles/pain in the arm and face normally come at night, and I'd been using a heat pad to try and alleviate it (it helped a bit). What I also noticed that it was worse on the days I lay on the sofa all day - so the last few days I've gone out (with someone else) and just taken it easy but still feeling like I was doing something, and for 2 nights now I've been virtually symptom free!

However I do think I might have overdone it today as the chest pain came back this afternoon and took a while to ease off. This of course kicked off the anxiety that has been plaguing me since this little adventure started. I've had run ins with anxiety and depression since I was in my teens, so it wasn't new to me... but I'd forgotten just how debilitating this can be, on top of the physical symptoms.

So I've had my CT scan now (no results yet) and I start phasing back to work (desk job, wfh) tomorrow for a couple of hours to see how it goes. I then have my MRI in a few days - so I'm hoping to have results soon.

If this is indeed inflammation, it's clear it's still not a well understood condition and there's no effective treatment except rest and trying to manage the symptoms. I'd normally have taken ibuprofen and codeine for the pain, but I can't with the other medications for now and paracetamol doesn't really cut it.

Also, in terms of lowering cholesterol - I need to make lifestyle changes regardless of FH or not. I am overweight (if you saw me you would be able to tell I liked a biscuit) so lowering saturated fats and losing weight seems sensible. I had great success on the fast 800 a couple of years ago, however I'm unsure if this is the way to go as it is high fat as well as high protein. I'm really open to any suggestions. Except using that Flora pro-activ. I'm currently not bothering with spread instead of using that excuse for a butter replacement 😂

Anyway - thank you for giving me the space to write this and get it off my aching chest. I've really enjoyed going through the forum and seeing the lovely replies you folks give, and I've also taken some reassurance form previous posts on myocarditis to know what I'm going through isn't unusual for the condition. As much as I wish you didn't have to suffer this - it's been really uplifting to know I'm not alone. 🥰

CB x

[Anon2023]

Hi. I’m really sorry that you are going through this but welcome to the forum. I imagine that your head is all over the place at the moment but it sounds like you have a good relationship with your gp which is half the battle these days. If you are in pain please don’t suffer in silence.

I don’t know much about myocarditis but there are lots of people in the forum who do, I’m sure they will be along soon to offer support and information. One of the big things for me when I joined this forum was knowing that I wasn’t alone. I’m lucky that I’ve got a brilliant family but it’s not the same as talking to people who have been through what you are experiencing and know how frightening it can be. You are not alone so don’t be afraid to ask for support if you need it.

[Captain_Birdseye in reply to Anon2023]

Thank you so much I totally agree, family and friends have been great but it's not the same as knowing what someone is going through!

[Milkfairy Heart Star]

Hello Captain_Birdseye,

Has anybody considered non obstructive coronary artery disease NOCAD?

Microvascular dysfunction and vasospastic angina?

I have lived with vasospastic angina for 10 years. My coronary arteries go into transient contrictions causing a lack of blood supply to my heart.

If severe, a coronary vasospasm can cause a heart attack even without blocked coronary arteries.

Young women more often experience a Myocardial Infarction non obstructive coronary arteries MINOCA due to coronary vasospasms or microvascular dysfunction.

I was admitted to hospital with a suspected heart attack. I had mild myocarditis. However I didn't get better and I was later found following the appropriate testing to have vasospastic angina.

My subsequent cardiac MRIs still shows a small patch of scarring in my heart due to myocarditis.

My symptoms are chest pain at rest usually between midnight and 6am.

I have the following neurological symptoms of sensitivity to light and sound, vomiting.

My left hand, arm and side of my face becomes numb, with a pins and needles sensation.

I have an ice pick headache.

If I physically do too much I'll experience more chest pain later.

My other triggers are the cold, emotional and mental stress.

The BHF has this information about vasospastic and microvascular angina.

bhf.org.uk/informationsuppo....

bhf.org.uk/informationsuppo...

I suggest you keep a log of your symptoms.

When you have your follow up appointment, perhaps ask the Cardiologist to consider NOCAD .

Unfortunately both microvascular and vasospastic angina just like myocarditis are often overlooked and undiagnosed.

It took me a while to get my diagnosis. I know just how challenging it is to live with the uncertainty not knowing what's causing your symptoms.

I hope you get the answers soon.

[Captain_Birdseye in reply to Milkfairy]

Hi Milkfairy,

Thanks for the response - no one has mentioned NOCAD to me, and I'd never heard of it until now! It sounds like you've suffered a bit through this - I'm so sorry, but glad you did get the diagnosis. Are you able to manage the symptoms now?

I'll definitely mention it during my follow up - as some of the symptoms I have seem pretty similar to yours and don't feature so much when reading up on inflammation information.

I have a MRI tomorrow so hopefully this would show up during the scan!

Kind regards, CB

[Milkfairy Heart Star]

Good luck for your MRI scan.

It's a good way to look for inflammation or other problems with the heart.

An Cardiac MRI can help diagnose Myocarditis or microvascular dysfunction a common cause of Microvascular angina.

My vasospastic angina was diagnosed by a specialised angiogram.

[XmasEve24]

Hello-all good advice given so far. Also I would recommend getting the book ‘A Woman’s Heart’ by Angela Maas. A female cardiologist who specialises in Womens hear health -available on Amazon. It explains a lot- well it did for me. Good luck.

[Milkfairy Heart Star in reply to XmasEve24]

Excellent book, I agree. A great recommendation.

[Captain_Birdseye in reply to XmasEve24]

Thanks both - I've got the book on order

[Milkfairy Heart Star in reply to Captain_Birdseye]

Prof Angela Maas, has recently retired from clinical practice.

She is a champion of women and heart disease.

internationalheartspasmsall...

Prof Maas was also one of the all women authors of the Lancet Women and Cardiovascular Disease Commission Report published last year.

internationalheartspasmsall...

[Captain_Birdseye in reply to Milkfairy]

What an inspirational lady... I completely agree that women's health is under researched - but that is perhaps a rant for another day. Hopefully with more people like Prof Maas championing the issue and raising awareness things will change. I look forward to reading her book over the weekend

[Gc39]

Hi I’m new here and suspect I may have myocarditis so I am just scrolling through posts. Did you get anymore answers? Have you had your mri results yet ? I hope you are feeling better

[Captain_Birdseye in reply to Gc39]

Hi, thanks for reaching out!

If you check my profile you'll see my other posts - but yes I did get all results back and all looked very reassuring (no scarring or swelling, good heart function, clear arteries).

Obviously good news, however I still get a lot of chest pain, especially if I've been more active, and have started to get breathless sometimes... I'm noticing improvement for sure, but still need some investigation.

What makes you suspect myocarditis? Are you getting support?

[2Livebetter]

hi re cholesterol I’m the same, my diagnosis is pericarditis, following a nasty bout of C in June/July 22. Similar test results except they also found I had enlarged RA and MR.

So I’ve switched to skimmed milk for whole. Stopped all butter, practically cut cakes and biscuits although I’m am going to enjoy the cream tea for my mums 90th birthday.

I’ve also invested in an air fryer to cut cooking fats where I can and generally avoid processed food. This is not as easy as it sounds as I’m an emotional eater with now anxiety over my intermittent symptoms.

I feel like I have two thing going on. 1 I think Cis a sitting virus like a cold sore which any stress to the body triggers symptoms even after the initial bout. Any thing like tiredness, anxiety, other viruses, stress as well as physically over doing things brings on symptoms.

Since C I’m left with constant runny nose and stuffyness, headaches, intermittent sore throats and fatigue with muscle aches.

This then progressed as I was continuing to push myself to work, although running was impossible to get back too. Shortness of breath on any exercise like climbing stairs, walking at my husband pace etc then chest pain which would and feel is like an elephant sat on my chest which I was working with thinking I was developing asthma? Then progressed to a more localised pain central chest like some one was pushing a tennis ball into my chest. Also utter fatigue where I struggled to get out of bed.

I went to GP who said it’s cardiac and the next chest pain call an ambulance!!!! This was weird as I was frequently having chest pain…..anyway next day called an ambulance they said BP really high and need hospital. Ended up in CCU for a couple of nights then the ward for a few more days. Before discharge with meds and diagnosis.

So 2 symptoms of pericarditis & mitral regurgitation symptoms, shortness of breath, chest pain and fatigue.

This has left me off work, frightened to do any exercises, sometimes housebound (this is often a result of doing the washing or coffee with friends the previous day) I’m so frustrated and can’t see an end point. Now wondering whether I will ever get back to work.

I have a shift booked next week it’s a sit down job and I have to give it a try and terrified the after effects if I get through it.