Viral Myocarditis

[Nb55]

anyone had something similar? My anxiety is all over the place! I am wondering if anyone flew this close to diagnosis.

16 May I woke up with a tight shoulder, jaw, arm, couldn’t breathe, sweating, felt unable to walk. Eventually I was admitted to hospital for 2 days with abnormal BNP levels (250 - 205 -280) and inverted T wave (minimal, have had for years.) ECGs, echo, stress echo came back ok. Troponin normal, CRP normal. Was told to go home, carry on as normal, exercise etc. I had informed the doctor I had a bad virus April-May with severe left armpit lymph node selling. Ultrasound for lymph node came back fine, resolved in 6 weeks with antibiotics. Doctor made no connection to my chest pains and would not conclude diagnosis or give meds.

Went back for 1 week check up, BNP still 280. Asked to wear a Holter as looking for arrhythmias (I had SVT as a child, resolved) nothing was picked up. Referred for Cardiac MRI to conclude I had myocarditis. No meds given, told to keep active as normal but unsure if I can fly in July.

One week later I sought a second opinion from a more senior doctor as the gandolinium for the MRI seemed severe and I was nervous. New Dr said it was obvious I have myocarditis, take some beta blockers, take the trip and have fun but lay off intensive excercise (had been running a couple of miles each day, was surprised to hear the original doctor said it was ok) Words were “go get pissed with friends” I’m a 40 year old mum - not my thing. No MRI needed. Informed him I have a low BP (100/65) and low heart rate while sleeping. Said to continue with beta blocker.

next day I wake with same chest pains, back to hospital at the new location where 2nd opinion doctor practices. This Dr does not liaise with my second opnion (they work together) and believes I have had MINOCA both times. CT angio clear, ecg (other than inverted t wave) echo, Troponin, and bnp back to normal range (28 - 85). CRP high but I have another virus thanks to toddler. This virus has forced me to rest for a week. Starts me on aspirin, trimetazidine, and antibiotics. Told not to take beta blocker Concor as my BP is too low. Says to follow up with the 2nd opinion doctor in a week. No idea if myocarditis is resolved.

I am meant to fly for a month in July to travel around the UK (current non resident returning). I have so much conflicting information my head is spinning, my anxiety is very high.

I appreciate these numbers may not seem severe to some, but the reoccurring pain and fatigue are triggering anxiety. As are the conflicting diagnosis and medicines. I guess I am seeking similar stories or even just reassurance to help me get my anxiety under control. Has anyone flown this close to diagnosis?

[Tos92]

Hi Nb55

I’m sorry to hear about the confusion surrounding your diagnosis.

What caught my eye when reading your story first was that you were prescribed Trimetazidine, and this is not licensed in the U.K. But then I checked your bio and saw you’re based in the UAE, which is also where I got my prescription for the Trimetazidine.

Going back to your symptoms, I have previously been investigated for possible myocarditis and it was negative however, the symptoms you describe are similar to having myocarditis. Usually, a doctor will use a stethoscope to listen to your heart as one of the main symptoms in myocarditis is an abnormal heartbeat, in addition to the ones you mention.

I can see you’ve already had some tests that have come back clear a part from the BNP and CRP. There are other causes for elevated BNP and CRP that are not always heart related.

I would go back and get clarification as this is most likely to affect your travel insurance. If you are still under investigation for a diagnosis, you may find that a lot of travel insurers will not cover you.

I would recommend the cardiologist that I see, he is based in Dubai but I am not sure where in the UAE you are and how accessible this will be for you.

Just to add, symptoms from myocarditis can last anywhere between 3-6 months.

There are other members that have experience of myocarditis, so I hope they will be along to share their stories too.

All the best.

Tos

[Nb55 in reply to Tos92]

thank you, good points I’ll look into. I’d be happy to have your reccomendation.

[Tos92 in reply to Nb55]

I will send you a PM :).

[Milkfairy Heart Star]

Hello,

11 years ago I was admitted to hospital with a suspected heart attack.

My diagnosis took sometime as in the past it wasn't recognised that women can have lower troponin blood levels when they have heart problems. Since then high sensitivity troponin blood levels are now measured too. This has improved the detection of heart attacks in women.

Do you know what type of troponin tests you had?

I was found to have myocarditis and later my diagnosis of vasospastic angina was confirmed.

I had 2 heart conditions at once!

The myocarditis has left some scarring on my heart muscle.

My advice is that you need to rest, rest and then rest some more. I feel Cardiologists under estimate just how tiringand painful heart conditions like myocarditis can be.

The usual treatment is with anti inflammatory medication rather than antibiotics which are prescribed for bacterial infections rather than viral infections.

I am not surprised you are confused, uncertainty can make us feel more anxious.

Troponin blood levels are usually raised if you have had any damage to your heart muscle, infection, inflammation or for other reasons.

You say your troponin blood levels haven't been raised which is usually one of the key blood tests to determine whether you have had a heart attack or myocarditis.

A raised CRP suggests inflammation or an infection.

A Myocardial Infarction non obstructive coronary arteries MINOCA can be caused by microvascular dysfunction, coronary vasospasms, spontaneous coronary artery dissection SCAD, or a blood clot or piece of plaque that has broken off blocking an artery.

Has your Cardiologist suggested which is the possible cause of your MINOCA?

NT-proBNP are usually raised when a person has heart is under strain. There is a condition call Takostubo syndrome that leads to an acute form of heart failure that usually resolves over time.

I suggest you ask your Cardiologist to provide you with a fit to fly letter.

To be able to obtain travel insurance ask that you are given a diagnosis. However if you are undergoing further tests it maybe difficult to get travel insurance.

You may find the information on the Cardiomyopathy UK website helpful too.

cardiomyopathy.org/about-ca...

cardiomyopathy.org/about-ca...

I hope you get some answers soon and are able to travel without problems.

[Nb55 in reply to Milkfairy]

Thank you for these comments. The fit to fly letter is a great idea. I’m sorry to hear about your journey and hope you are doing well. My Troponin was <0.10ng/ml. This has always been my result to date and I will ask about it in my next meeting

the MINOCA comment was followed by “in stress and anxious women” kind of put me off but that does sum me up at the moment.

[Milkfairy Heart Star in reply to Nb55]

When you get back to the UK, it might be worth trying to see a Cardiologist.There are some leading researchers into MINOCA and Ischaemia non obstructive coronary arteries INOCA in the UK.

I have a very supportive Cardiologist who has some understanding of my vasospastic angina and I have been reviewed by one of the world experts in the condition.

Having clarity about my diagnosis has helped me manage my heart condition much better.

I hope you have a safe journey back to the UK. I am sure you'll appreciate being back with your family who will be able to support you.

[Nb55 in reply to Milkfairy]

Thank you, that is a good idea.

I have private health care that I can use, if you have a recommendation I’d be grateful (I’ll be in various parts of UK)

I still have an option to do an angiogram here before I go, which I’m considering. The original doctor I saw here is from the UK and has a background in this area

[Milkfairy Heart Star in reply to Nb55]

Where in the UK will you be based?The forum guidelines ask us not to name individual doctors or hospitals, however I will message you some possible suggestions of whom to see.

A MINOCA can be caused by microvascular dysfunction or coronary vasospasms. A functional angiogram is required to diagnose Ischaemia non obstructive coronary arteries, INOCA.

This type of testing isn't widely available and is best carried out by an experienced team in a centre of excellence.

[Nb55 in reply to Milkfairy]

I’ll be all over…London, Birmingham, Lake District. I had a follow up with an ex NHS consultant today. He can’t see any reason I have MINOCA and suspects sinus arrythmia when I am ill (both attacks I had were attached to having a virus). He’s 50/50 on myocarditis as my Troponin wasn’t raised. So much conflicting information!

[Milkfairy Heart Star in reply to Nb55]

You can have the symptoms of myocardial ischaemia- angina-chest pain when there is a mismatch between the oxygen demands of the heart muscle and the ability of the heart muscle to supply enough blood.

'This is termed the supply–demand ratio. It is now appreciated that an imbalance in this ratio (too little supply or too much demand) as might occur with a very rapid heart rate (too much demand) or a drop in blood pressure (too little supply) '

ncbi.nlm.nih.gov/pmc/articl...

I'll send you a message.

[fishonabike in reply to Nb55]

in addition to the links from Milkfairy you could try:myocarditisuk.com/info-supp...

[Captain_Birdseye]

Hi,

I was diagnosed with viral myocarditis nearly a year ago... it's a frightening thing to experience.

I was cleared to fly (only short flight though) just a few weeks after my diagnosis, and the flight was a couple of months away - but it's really important to rest completely, both physically and reducing stress levels. It's the only consistent advice out there for myocarditis. 3-6months is the normal recovery time given.

If you had an injured muscle anywhere else on your body, you would limit it's use and give it a chance to heal, you need to do the same with the heart.

I was prescribed colchicine for mine... it's an anti-inflamation medication normally used for gout, but it's not a painkiller. I was advised to take paracetamol and ibuprofen for the pain, although at points they barely took the edge off.

Happy to answer any questions if you have them.

[Nb55 in reply to Captain_Birdseye]

thank you, how are you feeling a year on? We are now debating whether to postpone the trip. It’s an 8 hour flight with lots happening. The good thing is we will be by family, which currently we have no support due to where we live. I’ll have a more in depth conversation with the doctor on this

[Captain_Birdseye in reply to Nb55]

Yea that's definitely going to be a call between you and your doctor... what I will say is that on my case, the cardiologist said that my comfort would be the biggest issue, rather than specific health issues - although my anxiety was through the roof which probably didn't help. And of course, worth checking your travel insurance to make sure you're covered while you have ongoing symptoms.

A year on I'm feeling pretty OK- although I'm getting over a bout of pericarditis that caused some concerns a couple of months ago... it doesn't always follow myocarditis but something to keep an eye on, especially if prone to picking up infection.

But the myocarditis itself took about 6-7months to resolve. I still experience ectopics but it is getting less frequent. Constantly improving, I like to think!

And I'm flying again next month 🙂

[CrazyLif]

hi. I had myocarditis a couple years ago. It took four months to diagnose because the world had stopped. As a result I was very sick and was left with scarring my heart. It also lead to heart failure. I am not say this will happen to you, but I am flabbergasted about the advice you are getting. Anyone who knows about myocarditis knows that the cure is rest, rest and more rest. Your heart needs complete rest. If not you do end up with scarring and a long recovery timeline.

Until the world stopped a couple years ago myocarditis was a very understudied condition. You don’t need to study about it at all to graduate from medical school. Because it was relatively rare, no one bothered to study it. This is now changing. But unfortunately lots of doctors know very little about it. Make sure you get to see medics that knows something about it - and above everything else REST!!!

[OpenMind1]

Hi Nb55 I'm so sorry to hear you're going through such a tough time. I don;t have an awful lot to add to what the wonderful Milkfairy and Captain_Birdseye have to say (they were incredibly supportive of me) I was diagnosed with Myopericarditus in January after 2 weeks in hospital having had chest pain. In my case I did have raised Tropinon by all other tests came back fine. I'm a 47 year old runner and fit like you, am on colchicine, an anti inflammatory, I wasn;t given betablockers due to my low heart rate (early 40's). I have been anxious that things don;t seem to be improving for me on the pain front (no sever episodes but constant discomfort, twinges and fatigue). I have just taken the leap and had a private consultants appointment on Friday which was really helpful, I felt like I had the time to explore things with him, he's a specialist in Myocarditus Dr Guttmann, based in London but had a video call, was useful to send all my discharge notes and letters to him in advance. I'm now going to have a private Cmri to see if anything's changed as I'm really cncerned damage may hav ebeen done since my hospital stay. I'm also have a 24 holter and Ech on the NHS in the next couple of week.. but these appointments were supposed to be at the end of March... things take so long which isn;t ideal if you're feeling anxious.

So I would echo what's been said.. rest is vital.. as is avoiding emotional stress as much as possible.. I did a lot of should I shouldn't I about my big work days which I think were probably more problematic that actually doing it.. so your trip may be taking it's toll on yu already. I'm nearly at 6 months and am still experiencing things.. so give yourself time.. the more you rest the sooner your body will be able to heal itself. and if you can afford private help do it, it will really help you get some clarity I think.

Take care

[Nb55 in reply to OpenMind1]

thank you for sharing your story and for the insight into the heathcare path you are taking, I really appreciate it and hope you feel better soon.