Myocarditis update and more questions

[OpenMind1]

Hi everyone, I've not posted for while but read posts everyday, you're such a supportive bunch. I was lucky enough to see my consultant last week, 8 weeks after my discharge with a diagnosis of myopericarditis, i thought it might be useful for som of you to know what he said.I really wanted reassurance that the bouts of pain I'd had post hospital hadn't caused damage was so ready to fight for tests.. but straight away i was offered a follow up echo and troponin test.. then a 24 hour monitor as i said i was worried about my low pulse.. 44 (into the 30s at night).

What i hadn't considered was that I'm likely experiencing post viral symptoms too... as mine is likely caused by a virus... not necessarily that which shan't be named.. I wasn't aware of having been ill. I've not been feeling well in the last few weeks.. some days are ok but mostly a mildly active morning results in a headache and feeling washed out.

My troponin test came back at 32 yesterday.. 6 weeks ago it was at 90.. when the dr called I thought.. oh that's good it's coming down... but it seems to be taking a long time and I'm wondering if it's going up.and down...

Question 1 ... has anyone had experience of ongoing high trop?

The dr wants my trop to be at 0 and 3 weeks of no pain before I start to exercise my heart.

Question 2 ... i know it probably doesn't matter but.. i don't understand if the extreme pain and high trop, with a slightly changed ecg that they treated as a heart attack when I went is is still considered to have been a heart attack or if myocarditis supercedes that diagnosis. I'm so good at thinking about things to ask after an appt.

Seeing the consultant again in 4 months.

Sorry a long one... hope it might be useful for some of you and looking forward to hearing your thoughts.

Keep on keeping on everyone x

[Biggles33]

morning.

Oh it’s so awful isn’t it and yes you could well be experiencing post viral symptoms. I’ve been quiet on here for a couple of weeks as I’m really unwell. As you already know what I thought was myocarditis (still awaiting an mri for confirmation) as time has gone on and other things have developed. I am definitely suffering from the long C. I have been housebound for the past 6 weeks, I have varying degrees of chest pain, from a heaviness to what feels like stabbing pain in the heart especially at night. I also have now been diagnosed with Pots and all the debilitating symptoms that come with that. Pins and needles. Joint aches, feel nauseous all the time…headaches. It’s just horrible! I’ve never felt so poorly or scared in all my life, it’s like living in a nightmare.

I’m not sure about the trop levels as my bloods were always showing normal. However from other peoples posts it sounds like myocarditis/peri pain can last a long time. My cardiologist said expect to have the myo for 6-12 months.

X

[OpenMind1 in reply to Biggles33]

Oh gosh I'm so so sorry to hear you're still so poorly. I completely get the fear thing, i was on my own when I was getting pain yesterday and I can't help but fearvthe worst. I just read a post from someone else whontalked abiut this being like PTSD that as well as dealing with the symptoms we're dealing with the shock of it all. Have the meds you were given not eased things any? I can't imagine how tough this must be for you with children to look after. Sending you all the very best wishes... i like you am thinking i need to be thinking in terms of months not weeks 😞 x

[Biggles33 in reply to OpenMind1]

it’s soo scary, I am also stuck because the wait to see a cardiologist is apparently 45 weeks, so I’m looking at waiting over a year for an MRI. To pay private, it’s going to cost me £2k which we really can’t afford especially now I’m not working and don’t know what the future holds. My GP feels my frustration but he said he can’t help me! So I still have no idea for sure if I have myocarditis or if there is any damage. The beta blocker have helped slow my heart down and decreased the amount of adrenalin, other than that I’m just still really poorly every day. I am waiting to see the Pots specialist (which again we have had to pay private for) but that’s not till May. X

[OpenMind1]

45 weeks, that's awful. I think I've been lucky because the raised troponin caused enough worry to get me the tests, although my Cmri didn't show anything so it may not give you the reassurance you need. I can sort of accept the post viral bit... that that might take time, it's the fear of the chest pains and not wanting to cause damage that plays on my mind. I hope your private appointment helps, I've found talking to the BHF nurses on here really helpful too. Hang in there x

[Captain_Birdseye]

The wait times are difficult just now, I'm also considering going private.

I'm coming up to 9 months post diagnosis and still have chest pains and occasional shortness of breath and can't get an appointment with my cardiologist... it's not been a great few weeks but it's passing again. It's tempting to think about going private, but they have long wait times as well now.

[OpenMind1 in reply to Captain_Birdseye]

😞 really sorry to hear you're having a tough time again. 9 months is such a long time to be having to deal with pain and worry. Wishing you all the very best.

[Catkin-blake]

Hi I had peri-myo in November and a Cmri end of Jan, which showed a little scarring but no thickening of muscle wall oedema so my cardiologist told me that the MRI results showed as I was over the myocarditis , though I now have MVD the cause of my current discomfort- when I had a ultrasound in November it showed inflammation of the LV, and like you I had raised troponin levels , and inverted sinus t waves which they initially thought was a HA, I had all the systems of one... what they keep telling now was I had a heart event, which resulted in damage( scarring) and so a release of troponin , my heart couldn't function properly with the inflammation. mind you they are now saying it was unlikely to be viral but immune related in my case, either way its the same treatment. hope you start to recover soon, its a long road but you do get there in the end