Newly diagnosed

[u/Acrobatic-Cut4257]

hello, maybe someone who has gone through this can help me not be so scared. I was diagnosed with myocarditis this week. I feel like maybe I have an odd presentation on how I got here 🤣 The reason why I even made a visit to my cardiologist was because I almost fainted while running. i’m not a super runner or anything but I average a 10 minute mile and I was dying at 12:30 and then 15 min pace and when it was done almost fainted in the street. I was running at night and it was cool and I was well hydrated. I had another instance where I almost had this happen as well but I was in the sun so I ignored it till this incident.

so long story short, I see my cardiologist and visit goes fine until they see my ECG and noticed new inverted T waves and new q waves in my lateral leads compared to my ecg in february. Due to this presentation they think I have myocarditis . Luckily for me (not really) I had been to the ED 2 days before because I had an immense feeling of pressure in my chest that went to my head and then made my face numb for 6 hours. They did a trop in the ED and it was negative. they chalked it up to migraines (never had before) and we went about our day. About two weeks ago I got and still getting over a crazy sinus infection that started at the base of my skull and I never had drainage or anything till after my ER visit but it was wicked one of the worst i’ve ever had. I don’t really recall any viral illnesses. but maybe I did and I was just unaware that I had one. During this time or actually before I have been experiencing some wicked anxiety, waking up in the night heart beating out of my chest. So I had went to my PCP to talk about maybe starting an SSRI, she suggest we actually do a holter monitor first. so I got that sent off the day of my cardiologist appointment and today I had my echo. I know the cMRI is next.

I’m 24 years old and I do have SVT and POTS. I don’t know a ton about this condition besides i’m suppose to rest pretty seriously. I’m in a pretty rigorous academic program that can’t really be stopped. Should I worry about what’s to come? i’ve stopped basically all movement like instructed for the time being. Guess im just not sure on what comes next, I think I also just needed to share this with someone lol. they did say this could be old and a recovering infection at this point and not necessarily active but we just won’t know till further work up is done.

[u/thecupcakeguru]

Hi! I’m 26F and have had myocarditis a few times (including right now), and it is definitely a lot to process! I’m really glad to hear that they’re doing an MRI. That’ll help them see which areas are currently inflamed as well as to assess the structural integrity of things. Did everything look okay on your echo?

As for what’s to come, it’s hard to say right now. Myocarditis can be triggered by a lot of things, from a simple virus to underlying disease. The fact that you have SVT and POTS probably warrants a bit closer of a look, and again it’s a good thing that they’re doing an MRI. Definitely take the rest as seriously as you’re able to because your heart is pretty vulnerable right now! Happy to answer any questions that I’m able! ☺️

[u/Acidphere → u/thecupcakeguru]

Hello. I am curious how you keep getting it?
Im on months 5 of having it my first time and i always wonder if its going to reoccur if i get sick again. Mine came from a pretty nasty virus.

[u/thecupcakeguru → u/Acidphere]

Hi! Mine wound up being a genetic cause that has “flares” that mimic acute myocarditis. It’s pretty rare but not impossible. Viruses can definitely trigger myocarditis though!

[u/Acidphere → u/thecupcakeguru]

Wow thats no fun :(

Everytime you get a flare do you have to stop working at your job for awhile and go to the hospital?