Is this Myocarditis? Help?: I’m 40yrs... - British Heart Fou...

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Is this Myocarditis? Help?

Paulit profile image

I’m 40yrs old and got diagnosed with myocarditis last march 2019. And from there it has been downhill for me. I’ve never felt normal since then. I have constant dizziness.Palpitations in my hands and legs. My legs have become quite weak and loss of balance.

It started with dizziness and numbness as I could not feel my legs. Then came the head rushes which resulted in my heart pounding for an hour or so (HR was more than 150 while lying down). It always starts with a head rush and dizziness then my heart starts to pound and would like to know if anyone has experienced this.

My symptoms include dizziness, shortness of breath, chest pain and fatigue. Other symptoms include dry and pain in my throat, constant flu like symptoms and so fourth. Am very delicate to noise and lights since they make me fatigued as soon as possible. When things are moving around me then stop, my dizziness also increases dramatically. Also when I am in zoom meetings concentrating, I just suddenly feel deep fatigue in my head then strong dizziness and cannot follow up.

My tni has been way elevated for more than a year. Tnt is normal which is a bit confusing. ECG has been all the same with negative t-waves (normal people don't have negative t.waves) and has not changed.

My heart pounds a lot. I can feel it in my neck and head. Am on Bisoprolol.

Sometimes I feel pain in my heart when I breathe heavily and have to change positions.

I have been having constant dizziness and head rushes 24/7 and sometimes feel like I'm losing my mind. Sleep is my biggest asset now. Less than 7 hrs of sleep, i cannot function during the day.

The doctors now tell me that my myocarditis has healed but the symptoms have doubled. In the Autumn, I'm ready to quit my job and stay home since I am always on bed rest all day.

Before all this, I was very healthy and went to the guy 5-6 times a week. We tested for lyme disease but it was negative.

20 Replies

I’m so sorry to hear about your experience. Myocarditis can be so frustrating because doctors say you’re fine but we certainly don’t feel fine at all!!

When I had myocarditis I found the MRI the only test that gave me peace of mind, because it showed me whether the heart is functioning ok or not. Have they done an MRI? What were the results if so?

Paulit profile image
Paulit in reply to Cookie95

Thanks for your reply. Yes. I've heard multiple MRIs and all other images (even PET and SPET) they are all showing that my myocarditis healed 1 year ago. But the symptoms are increasing tremendously.

Cookie95 profile image
Cookie95 in reply to Paulit

That’s extremely annoying...

Hopefully professionals can give you better advice but here are the steps I took to get rid of the symptoms I had (chest pressure, shortness of breath, tiredness, heavy legs, etc.):

- I stopped working. I needed my mind and body 100% focused on healing and resting. Especially since being work would make my chest pressure so much worse, even if I tried to take it slow.

- Changed my diet drastically. I dropped all the processed foods. I became very aware of what I was putting into my body (all these ingredients in the food labels that we don’t understand), and tried that at least 90% of my diet was real food (as opposed to processed, additives, chemicals. etc).

- I started meditation. Since I couldn’t do any kind of physical activity because that’d make my chest hurt.

- On the 8th month I started “rehab” with a physiotherapist/personal trainer. That helped me to do controlled physical activity and I started to build up my conditioning again. One cardiologist told me the heart is a muscle in the end, so just like the rest of muscles, after a period of inactivity or illness, it needs to be trained again.

Hope some of this helps.

Paulit profile image
Paulit in reply to Cookie95

Thanks! An now just started with physiotherapist/personal trainer but I have bed rest symptoms. Lets see how this goes.

Hi Paulit , the test for Lyme is really poor with lots of false negatives. It also doesn't test for the 10 or so co-infections either. I have a similar story to you but for 12 years I was told it was chronic fatigue syndrome. It wasn't. Don't be me. Keep pushing your GP for answers.

Take care

My tests for Lyme disease are slightly elevated but they said that they cant give me any medicine for that. I'm now pursuing the private sector.

Paulit profile image
Paulit in reply to Paulit

And thanks for your reply :-)

I have recurrent pericarditis and recently (well, before the pandemic, that is) my cardiologist said he couldn't rule out my latest acute pericarditis flare didn't come with a concurrent myocarditis 'event'. That's when he told me the combined conditions meant it was going to take much longer to recover from even once the conditions cleared 'officially' (in my case the cessation of pericardial friction rub).

It's been just over a year and I'm only now feeling close to fully recovered - usually fully recovering from an acute pericarditis flare 'only' takes me 3-4 months, but this latest flare (combined with the myocarditis) has taken over a year to fully recover from and yes, during my recovery period I continued to have 'discomfort'. It wasn't until April 2020 the pain tapered off and is now fully gone - what a relief it was to wake up one morning and realise I didn't hurt any longer!

Like Cookie95, the most reassuring thing were the tests - the echo and the angiogram showing here I was with pericardial effusion and heart function.

And again like Cookie95, I'm wondering if you've had an echocardiogram or MRI. I know the pandemic is causing 'routine' testing (as you've been declared 'healed', any further investigations would be considered 'routine' or 'follow-up') to be impossible to have booked, and once things really ease off it will then be a tailback booking-wise.

But you need to let your medical team know you're having difficulties and ask for follow-up scans to be sure the myocarditis is cleared and has left no complications. If you can't get your medics to book you for follow-up scans, you might want to consider going private for them - a bit on the pricey side but if there are complications it's best to know now (well, after the pandemic) rather than when/if those complications decide to 'go bolshie' on you.

Paulit profile image
Paulit in reply to Sunnie2day

Thanks for your reply. Yes. I've heard multiple MRIs and all other images (even PET and SPET) they are all showing that my myocarditis healed 1 year ago. But the symptoms are increasing tremendously. Went to private sector already and they cannot find anything yet also.

Sunnie2day profile image
Sunnie2day in reply to Paulit

Oh dear, that IS worrying for you - 'healed' but increasing pain is not a sign of recovery and it's not all that helpful for us to be saying 'Keep after the medics', I know.

But that's usually what it takes with the 'carditis' illnesses. I know my cardiologist didn't want to believe my recurrent pericarditis and lingering pericardial effusion were causing me to have 'angina like' pain but after extensive tests (that revealed other things, so not a waste of time there at all) he reluctantly agreed it was indeed possible. (He also discovered I actually do have 'angina with normal coronaries', so again, not a waste of time and energy)

In the end what worked for me to finally get real diagnosis' was keeping a daily log of: pain and when/where on my body, am-pm temperature-BP-pulse-sats, what I did to alleviate pain, what seemed to trigger it.

I kept my log on an Excel spreadsheet and when three visits in a row I presented that log to the cardiologist, he sat up and took notice. I can't really complain - in my case it 'only' took a year from onset of symptoms to 'final' diagnosis and treatment plan.

From what I read of others in a similar situation, I've had a very quick start-to-finish. (insert eye-roll emoji here) I know of at least three other members here who endured several years of 'what on earth is wrong here?!' to get a diagnosis and treatment plan.

I freely admit here to 'consulting' other free-to-download' sources online at: NHS, BHF, and Chest Heart Stroke sites, and the American sites Mayo Clinic, Cleveland Clinic, Harvard Med, Princeton Med, Johns Hopkins, and the American Heart Foundation. I avoided Dr Google completely despite becoming a bit desperate for answers.

Your pain is increasing - not decreasing, and that doesn't indicate 'recovery' and that would seem to mean there is something else going on, something only the medics can discover. I hope you'll keep after them despite the frustrations, and that you'll update us on your progress.

Hello Paulit, sorry you’re having such awful symptoms with little medical intervention - that seems to be common for pericarditis, I assume same for myocarditis. Think it’s because doctors don’t see it very often, tests are a bit variable, and it’s often idiopathic (unknown cause). Also still evolving but few treatment options. All this means you may need to advocate for yourself much more strongly with doctors, ensuring you speak to a specialist etc.

Some of your symptoms sound like pericarditis to me (what I’ve had recently) - shortness of breath, pain on breathing, pain that differs depending on body position, throat pain. It also sounds like you might have a virus/flu which can trigger heart-related inflammation for some.

Other symptoms sound like something else - palpitations, racing heart, and a lot of dizziness.

Is myocarditis like pericarditis, except the inflammation is in the heart muscle, not the sac around the heart? If it is similar, then perhaps like some pericarditis sufferers, you are having a second “flare” of your symptoms. A small number of Peri sufferers get chronic flares.

What treatment were you given when diagnosed? For Peri, some are re-prescribed the same meds if they get a repeat, is this worth asking your doctor about? I am on colchicine for 6months for Peri. Some people with Peri need steroids but that has side effects. I am also supposed to rest a lot, and keep my heart rate under 100.

Either way, I think you should see a cardiologist. Hugh heart rate, dizziness & palpitations can be from many things, it could be other parts of your biology (for me, stress, anxiety, bereavement made them worse, as did not drinking enough water, or an upset stomach, and also the menopause), or it could be something heart related (hole in the heart was my main issue, now fixed).

So it may be something you can fix yourself, or if not, you need the help of a specialist.

If any use, I’ve found there is a Facebook group with pericarditis sufferers sharing advice, there may be one for myocarditis or you could join the Peri one.

I’ve found I have to firmly tell medics what has happened with me in the past, and ask to speak to a specialist, to be able to get the right help. I even take my previous diagnosis letter with me, the times I’ve had to go to A&E.

Seek some further help & explain your symptoms are no better, you need re-testing. I hope you get someone skilled and get you some guidance.

Paulit profile image
Paulit in reply to TealGreen

Thank you for your reply! I would say that I've visited all the docs and done multiple images but still my symptoms are worse.

Hi - I had breathlessness & felt like I had a cold that I couldn’t shift, couldn’t sleep as couldn’t breathe when lying down & nobody believed I was ill I went to doctors several times & walk in centre which ended up with me thinking I was going crazy & that I was having panic attacks. Eventually dogged determination resulted in me being in ICU for 2 weeks and within 4 months I have had an ICD fitted . As per previous advice keep goi g back to doctors & I would suggest writing symptoms each day in a diary .

Paulit profile image
Paulit in reply to Fenlotted

Thank you and sorry to know what you went through. Am now visiting the private sector with specialists. Just started recording all my symptoms in a diary :-)

Hi Paulit. I have had negative T waves since my first ECG 35 years ago. No doc or medic has ever said anything about it other than "It's normal".

T wave alternans is the one to worry about. This can cause bad ventricular arrhythmias and sudden death.

This is when the T wave lengh and height varies from beat to beat.

Most children are born with negative T waves that with time reverts to positive. Some races have it permanently. I think the black Americans are one.

Paulit profile image
Paulit in reply to Palpman

Thank you Palpmam. Good to know about this. No wonder the doctors are less concerned about this ECG transition.

Milkfairy profile image
MilkfairyHeart Star

Hi Paulit,

I have had myocarditis in the past.

I live with coronary vasospasms and when in hospital the staff do consecutive ECGs

As my vasospasms start causing a lack of blood supply to my heart my ECG changes from normal, then T wave inversions in the lateral and inferior leads followed by ST depressions and then occasional ST elevations.

My Cardiologist has told me that in my case T wave inversions are not normal and a sign of myocardial ischaemia. It is a sign that I need further treatment to stop my vasospasms. However that's me.

Any ECG needs to be I interpreted with the patients full history taken into consideration.

I acknowledge the frustration of living with a debilitating painful heart condition.

I hope with time your condition improves.

Living with pain and tiredness is no fun

Paulit profile image
Paulit in reply to Milkfairy

Thanks for your reply and sorry for your condition. The doctors seems less concerned about my ECG. So am guessing the transition from positive to negative is not a biggie for them. The problem am having is that I have never had a break from this. Constant pain for more than 1 year now. Hoping this will end soon.

Milkfairy profile image
MilkfairyHeart Star in reply to Paulit

Good to hear.

Living with chronic pain is challenging.

Have you asked to be seen by a Pain Management Specialist?

I live with alot of pain too and I found in particular the support from the Clinical Psychologist very helpful.

I use CBT, Mindfulness meditation, tai chi and yoga. Yoga has helped as I use breathing and visualisations.

There are various apps available too

I take one day at a time. I have lived with my pain for 8 years. There are a couple of other forum members who also live with chronic pain and hopefully they will share their experiences and coping strategies with you too.

You are not alone

Any chance that some of the symptoms are medicine related? You mentioned being diagnosed in 2019 and it’s been downhill since then? However, speaking from experience, some of the symptoms are similar to ones you’d get from low blood pressure/bradycardia..

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