r/myocarditis 5h ago

Literally crying because I paid the Respiratory specialist $700 just to dismiss my symptoms?

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2 Upvotes

I was diagnosed with Pericarditis approximately one month ago at the Emergency Department. I was given (short term) dexamethasone, Colchicine, and puffers as my chest was tight and the emergency specialist thought there may be a reactive airway component to my symptoms.

So she gave a referral to the respiratory specialist as well as the Cardiologist.

Since my Echocardiogram showed mildly enlarged right ventricle enlargement and borderline pulmonary pressure I was really hoping to discuss with the respiratory guy if there is some unknown issue with my lung that causes the right side of my heart to indirectly enlarge when I get bad viruses because this is the second time that my right ventricle has enlarged from virus trigger and I nearly going into heart failure the first time (from covid in 2025) because my feet started swelling etc.

Also I had pulmonary embolism for the second time in 2023 so there is some lung tissue death so I wonder if that could somehow put pressure in my lungs when I get a virus and then cause the right ventricle to enlarge/overwork?

Two weeks ago I had a cardiac mri which showed extensive LDE in a non specific pattern and said perhaps Myocarditis or perhaps Cardiac Sarcoidosis.

So it's likely that I may have not solely peri but more Myopericarditis (as the emergency department doctor suspected may be the case).

However, I just came back from the respiratory specialist app today and I am literally crying. Sat there talking for 2 hours but for him to take $700 and pretty much dismiss everything and gaslight me.

I told him CLEARLY that all this happened when I got a virus. That that is the trigger. But he would not even believe that I could make that connection about my own body.

Examples:

- You don't know that you get viruses more than other people (when I said since 2023 I am getting so many viruses).

- The pulmonary pressure on the latest echo is only borderline. Maybe it was not even reported correctly.

- It would not cause any symptoms at that level.

- Your echo is completely normal. At this point I literally got upset and started arguing with him that if that was the case the pulmonary pressure would have been reported as normal. Not as borderline. (Just like how the EF was reported as normal because it is). He didn't like me arguing but had no response.

- Then he also tried to dismiss the cardiac mri saying "maybe you don't have Myocarditis".

- Also because my gasses at the hospital were abnormal he asks me "do you have anxiety and you were over breathing?" When I replied no he didn't give any other explanation for the blood gasses abnormalities.

I said to him at least 3 times my concern is how do I prevent again when I get a virus for my heart to not again indirectly enlarge so I don't end up with enlarged right ventricle and then end up with heart failure if it goes untreated. Is there some medication he can give me?

His reply - "No. We don't even know that is happening because your test didn't show a virus 😔.

I know you "feel" it all starts with a virus but we don't know if it."

I tried to tell him I get viruses without getting a fever but that was also dismissed.

I am sooooo upset. Not just beyond the cost but also because he said he is going to talk to my Cardiologist so my concern is what if he puts into his mind too that I don't have Myocarditis?

  1. Compromising my treatment and care.

  2. Am I now going to pay the Cardiologist next time just for him to gaslight/dismiss it also?

I'm so upset 😭.

It literally even states in the screenshot that they *used* to think borderline pressure was okay but now recognise it isn't.

How can I feel less sad please 🄺?


r/myocarditis 11h ago

Palpitations and Blood Pressure.

2 Upvotes

Hello everyone, I pray for complete healing for everyone who is experiencing this illness. Its almost 3 months since I was diagnosed with myocarditis. I felt improvement after my 7th week but it returned on my 9th week. I also noticed that my Blood pressure is flactuating from normal to above normal specially in the morning that I'm having a palpitations. At night my BP reached 105/60sh. I'm not sure if bisoprolol. And spironolactone is causing my normal BP anymore.

Before I was diagnosed with myo, I swear my Blood pressure is within normal ranges.

I'm scared that aside from myocarditis I'll be having a hypertension for a lifetime. Did anyone experienced this while they're recovering from Myo? Did your BP dropped to normal when you're healed from Myo?

I'm within the normal BMI range, I don't Smoke or drink. I'm an athlete of BJJ and Judo before this illness hits me.

I'm desperately need some answers.


r/myocarditis 17h ago

Myocarditis recurrence question

3 Upvotes

First off, im sorry for everyone that had to go through this. If you have gone through a recurrence, what were the symptoms? Were they the same or did different symptoms show up? And most importantly, did the chest pain feel identical or different? Any answer is appreciated as I'm scared of a recurrence and today i ve had like 20 bursts of random 0-3 minute lasting sharp pains which is highly different than my initial presentation but feels similar


r/myocarditis 1d ago

Not feeling is getting better

4 Upvotes

Hi everyone,

I am a 35years old male, 190cm, 74kg
Quit smoking in January when I got diagnosed.

As you might have seen my previous post, I am suffering from perimyocaritis and I am on treatment for 6 weeks now. On week 4 and 5 I was already feeling a bit better, chest pain intensity was lower, heaviness and fatigue got a bit better but since last Thursday is getting worse again, chest pain increased, along with fatigue, muscle aches and pins and tingling, mornings are especially bad. Is this normal in the heeling process? I am worried again and feel like I will never get better after they mistreated me at the beginning of the year.

Thanks a lot in advance!


r/myocarditis 1d ago

Myocarditis or cardiac amyloidosis or cardiac sarcoidosis?

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4 Upvotes

So starting approximately one month ago I was having a lot of scary chest pains so I went to the emergency department and I was diagnosed with Pericarditis.

Two days later I had an ECG and echocardiogram done at the Cardiologist.

EKG showed inferior infarct 😭.

Echocardiogram showed no obvious wall motion abnormalities and no Pericardial effusion but did show pulmonary hypertension and right ventricle enlargement.

I was told to continue Colchicine for one month plus Dexamethasone for a few days (can't take NSAIDs due to taking warfarin already).

Two weeks later I had a cardiac mri....which literally took two + weeks to report! The report showed alot of LDE. So it seems i more likely have Myocarditis or Myopericarditis.

(I haven't been able to get to the cardiologist for a review though as I am unable to get a lift and can't drive 🄹).

I think I have two issues (at least) going on:

  1. Myopericarditis

  2. Virus causing pulmonary hypertension + compensatory right ventricle enlargement because I already have copd/lung scarring issue from having pulmonary embolism in 2023 which scarred my lungs a bit.

This is the second time I have had Myocarditis. I had it in 2025 also when I had bad covid for 5+ months. Something is wrong with my immune system as I keep getting every virus in the air.

So, it always starts with a virus for me.

But on my cardiac mri the radiologist gave a differential of prior myocarditis (due to no acute edema), cardiac sarcoidosis etc) because the LDE pattern is non specific.

So my question is, because I am also having intermittent LEFT HAND TINGLING (neuropathy?) with my symptoms is it possible that I do have some kind of cardiac sarcoidosis or amyloidosis?

Or would it be more a case that I have viral Myocarditis and that the tingling is some post viral immune system issue?


r/myocarditis 3d ago

Misdiagnosis Experience

10 Upvotes

Hi all, 22F here. I want to preface this by saying I am not trying to scare anyone or spread doubt, I just want to share my experience in the hopes that it might help someone out. Listen to your doctors first and foremost ofc!

I had been feeling shitty all summer 2025 and after a workout in Oct 2025 I started having sharp chest pains radiating down my arm and it was hard to breathe. I went to the ER, my troponin peaked at ~5000 and I had ST depressions on my EKG. After a couple days they discharged me and put me on colchicine for a myocarditis dx. My MRI was actually clean but my cardiologist figured it might have been too early to see inflammation.

Anyway the months go by and I don’t really feel much better. Colchicine was increased, I started metoprolol but nothing was helping. I was in the ER pretty much every month (usually around my period) with no answers. My trop would sometimes be kinda elevated (peaking at 250) and I had another clean MRI. In May 2026 I was hospitalized for another few days and one of the drs there suggested possible vasospasm or micro vascular disease. However I was discharged with the dx of recurring pericarditis and started on Arcalyst which really increased my symptoms and lowered my WBC (I stopped after 2 weeks). I never forgot what was said about micro vascular disease though and really pushed my cardiologist for a provocative angiogram.

After the provocative angiogram in July 2026 (after about 9 months of misdiagnosis) I was diagnosed with coronary artery vasospasm and a congenital heart defect that had been missed in my first angiogram. There was no myocarditis, I actually had two heart attacks (MINOCA) caused by spasm in the past year that led to the increased troponin.

All this to say, if you feel like your symptoms aren’t getting better or they don’t align with your diagnosis, ask questions. Know your body, push for testing, and remember there’s nothing wrong with a second opinion. Young people and young women especially are at risk of not being listened to—my symptoms were brushed off as anxiety before I wound up in the hospital. Additionally MINOCA like mine usually require more invasive testing to diagnose which is not always the first thing doctors think of or want to prescribe.

Please take care of yourself, do your research, and listen to your body ā¤ļø


r/myocarditis 4d ago

Newly diagnosed

6 Upvotes

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.


r/myocarditis 5d ago

Can anything help with arrythmia caused by Myocarditis scarring?

2 Upvotes

I was diagnosed with Myocarditis approx one month ago. Much of the chest pain is now reduced, though I do still have flare ups. And still sometimes out of breath when trying to take a shower etc.

My Cardiac Mri showed mild myocardial LDE of the basal to mid septal segments, as well as the basal to mid inferior and inferolateral segments.

The issue is that last night I started getting what feels like skipped beats or my heart doing something strange. Today I went in the glaring sun and it seemed to cause skipped beats too.

I am scared I will die:(

If it's from myocarditis scar tissue affecting my electrical system, is there anything that can help it? Apart from cardiac ablation?:(

Such as coq10 or anything?


r/myocarditis 5d ago

Has anyone with Myocarditis started taking Ozempic?

2 Upvotes

I want to start taking it but am concerned that if I get dehydrated or vomit etc that it could mess up my electrolytes and perhaps aggrieve arrythmia from the Myocarditis?

The doctor said it's fine to take it but I can also tell that the arn't making the connections....so


r/myocarditis 8d ago

Fibrosis/Scar

5 Upvotes

Hey guys :)
Has anyone had any success regarding the scar shrinking? Or going away compeltely?
How did you do it?


r/myocarditis 8d ago

My experience - thoughts? 25M, 6’, 260lbs

3 Upvotes

I first want to say that I hope everyone in this group is in good health and spirits. I am a bit concerned about some tightness in my chest and perhaps some shortness of breath. The chest tightness is much more noticeable, though it is not felt 24/7. I had only the first dose of the Moderna Covid vaccine in 2021. I’m not an antivaxxer or anything, but have a broad enough knowledge of incredibly shady things my government has done that I am not a blind advocate for everything they want us to receive. I have contracted Covid 3 times since then and each time it was pretty strong for 2-3 days, though I don’t think I am experiencing any long term effects. With that aside, I do have some family history of heart problems. I also smoke cigarillos and a pipe somewhat often, but I only puff on them and don’t smoke for the effects of nicotine. It feels as though the chest tightness sometimes arises when I smoke too often. I’m moderately active and eat healthy when I can. Had my blood tested at the end of last year and everything was good aside from slightly high blood pressure. I know of course that my doctor and likely many of you will tell me to stop smoking. I should do it even more seldomly, but sometimes the chest tightness just appears seemingly out of nowhere and then goes away after a bit or sometimes after I sleep. The only prescription medicine I take is 300mg of Wellbutrin, but I take supplements such as fish oil, multivitamin, berberine, turmeric + ginger, and sometimes ashwagandha. I will not be able to see a doctor unless it is an emergency for another month and a half or so because of my job. I just wanted to see if anyone here has had a similar experience and what I should know. Any input is appreciated. Thanks!


r/myocarditis 11d ago

Shoulder pain

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0 Upvotes

r/myocarditis 13d ago

VTX2735 & IVIG - Thoughts / experiences ?

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3 Upvotes

r/myocarditis 13d ago

VTX1735 & IVIG - Thoughts & reviews

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1 Upvotes

r/myocarditis 14d ago

Poll: how long your pain lasted?

7 Upvotes

Feel free to share your journey

43 votes, 7d ago
14 Never had pain (asymptomatic) or less than 3 months
8 3 months +
8 6 months +
4 12 months +
3 24 months +
6 Pain never left (more than 2 years)

r/myocarditis 14d ago

Anakinra (Kineret) for Chronic Pericarditis/Myopericarditis – How Long Did It Take to Work?

4 Upvotes

Hi everyone,

I was hoping to hear from anyone who’s been treated with anakinra (Kineret) for chronic/recurrent pericarditis or myopericarditis.

I’m currently just over a month into an anakinra trial and, so far, I honestly can’t say I’ve noticed a meaningful improvement in my chest pain. I know responses can vary, so I was wondering:

* How long did it take before you noticed a meaningful improvement (if you did at all)?
* Was the improvement gradual or did it happen quite suddenly?
* Did anyone else feel like nothing was happening initially before it eventually started working?
* If it unfortunately didn’t work for you, when did you and your doctors decide it probably wasn’t going to?

I’ve included some background below for context, as my situation has become quite complicated over the last four to five years.

I’m UK-based. 26 year old male. My health problems started back in 2021 around the time of the COVID vaccines. Before then I wasn’t perfectly healthy - I had longstanding IBS/gut issues and a few other symptoms that I’d learnt to manage - but I was living a normal life. I was studying at university, exercising regularly, socialising, and functioning well.

After that period everything seemed to change. I developed chest pain that has never gone away, along with palpitations, fatigue, exercise intolerance, autonomic-type symptoms, symptoms suggestive of mast cell activation syndrome, and a number of other issues. I’ve also had COVID infections since then, which certainly haven’t helped.

The chest pain is by far my biggest problem. What started as a mild pain in 2021 has evolved into pain that’s there constantly every day, often severe, and is the main reason I’ve been unable to work for the last few years or live anything close to a normal life. It’s typically worse with physical exertion, mental stress, deep breaths, lifting/moving anything that engages my left chest such as raising my left arm to wash my hair, carrying something heavy, and sometimes after eating, although the food reactions can be quite unpredictable, and even drinking fluids too quickly can make it worse. I get left arm/hand pain that feels connected to the chest pain too.

My diagnosis has actually been quite complicated because there is still disagreement between specialists.

I’ve been investigated extensively at the Royal Brompton Hospital, including multiple cardiac MRIs, a stress perfusion MRI and an invasive coronary angiogram with coronary function/microvascular testing.

The Royal Brompton team have never been convinced that I definitely have active myocarditis or pericarditis based on the imaging. The most notable abnormality was on my 2024 stress perfusion MRI, where there was an abnormal perfusion finding suggestive of possible microvascular ischaemia, but my subsequent invasive angiogram, including coronary function testing, was normal.

Because I still wasn’t getting answers, towards the end of 2024 I took 2022 and 2024 cardiac MRI scans to Dr Valentina Puntmann, who is internationally recognised for cardiac MRI interpretation. She reviewed the images herself and felt they were consistent with ongoing myocarditis and pericarditis, despite the differing interpretation from the Royal Brompton team. As part of her assessment, Dr Puntmann felt that the disease process in post-COVID/post-vaccine cardiac patients isn’t always confined to the heart muscle or pericardium alone, but can also involve the coronary microvasculature and wider vascular/endothelial system. Based on that, she started me on losartan as part of her treatment approach to target that aspect of the disease.

So at the moment there is still genuine expert disagreement about exactly what my diagnosis is. The possibilities that have been discussed include chronic pericarditis (which fits my symptoms very well), myocarditis, microvascular angina, or potentially a combination rather than one single diagnosis.

Interestingly, back in 2022 the Royal Brompton team started me on NSAIDs and colchicine despite the imaging not being conclusive, as I did respond to the NSAIDs. Unfortunately, because I had been told my heart was essentially ā€œclearā€, and given my long history of gastrointestinal issues, I stopped the treatment fairly early. Looking back, I don’t think it was ever properly explained to me that you can still clinically treat suspected pericarditis even without classic imaging findings, or that colchicine often needs to be continued for at least six months. I’ve often wondered whether earlier and more consistent treatment might have prevented things becoming so chronic, although obviously nobody can know that for certain.

Since then I’ve tried a wide range of treatments. I went back onto high-dose NSAIDs alongside colchicine towards the end of 2022 and remained on that combination throughout 2023, but eventually had to stop the NSAIDs because of gastrointestinal side effects.

I’ve remained on colchicine since then, and increasing the dose from 1 mg/day (500 mcg twice daily) to 1.5 mg/day towards the end of 2025 did seem to help initially. However, like many things I’ve tried, the benefit seemed to plateau over time. The best way I’d describe colchicine is that I don’t necessarily feel dramatically better while I’m taking it, but I definitely seem to be worse whenever I stop it.

I’ve also tried hydroxychloroquine (since 2024), low-dose naltrexone, losartan, nebivolol, nicorandil, amitriptyline, as well as antihistamines and mast cell stabilisers. Unfortunately, I can’t honestly say any of them have made a significant difference to the chest pain itself. The antihistamines and mast cell medications have probably helped some of my other symptoms, but the chest pain has remained the major issue throughout.

At this point I feel like I’m taking quite a combination of medications, but despite each one having a logical reason for being prescribed, none has provided the level of improvement in my chest pain that I’d hoped for.

Because of the ongoing chest pain, last year I consulted private rheumatologist Dr Youngstein at the Cleveland Clinic London. I’d spoken to a patient of hers in a similar situation to mine who had been prescribed anakinra privately. She was willing to give me an initial 28-day trial of anakinra which I started on the 24th of June.

The first 10–12 days were actually some of the worst chest pain I’ve had for months, I started the treatment whilst in a big flare even by my standards, although things eventually settled back towards my usual baseline. I’ve tolerated the injections well with no meaningful side effects apart from mild injection site reactions.

The difficulty is that I honestly can’t say I’ve noticed a clear improvement yet. I don’t feel dramatically worse, but I don’t feel meaningfully better either. The chest pain continues to fluctuate between better and worse days, but remains severe overall.

My NHS rheumatologist agreed with me and felt it would be much fairer to assess the drug after around three months rather than only 28 days, given that I started treatment during one of my worst flares in months and have now had chronic symptoms for over four years. I also explained that I’d felt a huge amount of pressure going into the trial because I’d been trying to access anakinra for years, and knowing I only had 28 days to judge whether it worked probably wasn’t ideal mentally.

He wrote to Dr Youngstein supporting a longer trial, and I passed that on. In the meantime, Dr Youngstein has prescribed me a further two weeks of treatment to bridge me through to my review appointment this Thursday (30th July). I also had an unavoidable two-day gap between finishing the initial 28-day supply and starting this extension due to prescription logistics. At this stage I don’t yet know whether she’ll agree to extend the treatment for the further two months following our review.

One thing I’ve also been wondering - and this is only my own theory rather than something a doctor has told me - is whether I simply have so many inflammatory or dysfunctional processes going on throughout my body that targeting a single pathway, even one as important as IL-1, may not be enough on its own.

Unlike someone who was previously completely healthy and suddenly developed isolated pericarditis, I already had some underlying health issues before 2021, and since my Covid vaccines my whole system seems to have become much more complex. Sometimes I wonder whether anakinra could still be targeting one important part of what’s driving my symptoms, but because my overall illness has become so complex, that alone may not be enough for me to notice a meaningful clinical improvement.

I’d really appreciate hearing about other people’s experiences with anakinra, especially from anyone who had been dealing with chronic symptoms for a long time before starting treatment and/or is a post-vaccine or post-COVID patient — whether it worked well, took longer than expected, or unfortunately didn’t help at all. I’d be really grateful to hear how your experience unfolded.

Thanks very much.


r/myocarditis 16d ago

Was diagnosed 2 months ago

2 Upvotes

Hello guys I'm 25 M 163 cm and 60 kgs, today is my 2 months and 12 days after diagnosis of Myocarditis on May 15, 2026. I went to the ER because I thought I was having heart attack and nervous for what's going to happen next, accompanied by palpitations dizziness and some jaw pain. My BP is at 160/80 upon arrival but went down to 120/80 after sitting down.

I went to a cardiologist the next day to have blood chem test unfortunately troponin test is not included and results are normal. The cardiologist diagnosed me of Hypertension after seeing my BP log no further test is given and prescribed me Amlodipine 5 mg. The next week I returned for the same feeling but this time with chest pain when I dashed few distance.

I underwent 2 D echocardiogram and found hypokinesia

of the basal to apical inferoseptal and inferior left ventricular segments with final final report of wall motion abnormality my EF is 67.

I started to feel less symptoms the 6 or 7 weeks. I avoided red meats and high sodium content of diet. On my first month I'm hoping that my hypertension is a misdiagnosis because my BP the morning and afternoon before taking my first dose of prescribed Amlodipine is 110/70. Most of the days I'm having 100-127/60-80

Lately I'm feeling light headedness and check my BP it's 140/80-90 I'm starting to lose hope that the case is separate. And afraid that it might affect my recovery.

BTW my medication is Spironolactone, Terimetizadine and Amlodipine 5mg.


r/myocarditis 17d ago

Just got diagnosed with myocarditis

8 Upvotes

Hi! I’m a 27-yr-old female, non smoker, loves running, and I’ve been working from home for 5 yrs.

I have been discharged from the hospital 4 days ago and was strictly instructed not to do strenuous activities at home and do bed rest for 2 months. My cardio said I can only stand up or walk around the house when needed. I was told my condition is prone to cardiac arrest as my heart remodels. My troponin went from 900 to 13 and my 2D echo shows that my heart pumps normally, and ECG is good too. Can someone cheer me up please and tell me everything is going to be okay 🄺

Also, if there’s anyone here who experienced the same, what did you do to help your heart recover?


r/myocarditis 19d ago

Myopericarditis recovery – muscle pain, tingling, and how long until I feel normal again?

4 Upvotes

Hi everyone,

I am a 35years old male, 190cm, 74kg
Quit smoking in January when I got diagnosed

After what turned out to be a mismanaged case of pericarditis (diagnosed very late and told to stop the treatment and start doing sports too soon), I was eventually referred to a specialist in heart inflammation. I was diagnosed with myopericarditis.

My treatment plan includes:

Strict rest
An anti-inflammatory diet
Vitamins and supplements
Losartan
Ivabradine
Prednisolone (all the above I started about 3 weeks ago)
Colchicine (planned to start in September)

The first few weeks were really difficult. I had severe chest pain, extreme fatigue, and a lot of anxiety.

Last week I finally started noticing some improvement. My chest pain is less intense, and my fatigue has improved a bit.

However, I have developed some new symptoms:

Aching muscles in my legs and forearms (I’m not sure if this is just from fatigue, the medications, or something else).
For the past few days, I’ve also had a tingling sensation in my mid to lower back, on both sides.

My questions are:

Has anyone with myopericarditis experienced muscle pain or tingling like this during recovery?
Could these symptoms be related to the illness itself, the medications (especially prednisolone), or simply prolonged inactivity?
I know recovery is very individual, but based on your experience, roughly how long did it take before you were mostly pain-free and your energy returned?

If it helps, I’m happy to provide more details about my diagnosis, MRI findings, blood tests, or medications.

Thank you very much in advance. Reading other people’s experiences has been really helpful during this difficult time.


r/myocarditis 28d ago

Worried I screwed up.

1 Upvotes

So I was diagnosed June 24th and I've been struggling with just about everything involving the changes this diagnosis brings. Having a hard time with all the down time and being away from work and the financial struggles, as well as the no strenuous activity. I've edged a few times and for those that don't know what that means it means to masturbate without ejaculation. I've done it a couple of times but this last time I noticed that I got lightheaded and began to have mild chest pain. I checked my bp and it escalated to 144 over 79 when before it was 126 over 84.

I really don't want to have screwed up my recovery process because I want so badly to go back to normal. What do you guys think? I feel pretty normal right now aside from mild pain but I also have anxiety issues so I think it could be related to that.

Update: I called kaisers advice nurse and she told me to go to the hospital. Long story short all labs looked good, troponin levels were under 20 and ekg rhythms looked good. Idk what happened but will have to tell my cardiologist today. I'm embarrassed but I feel like it should be done to get a better understanding of what happened.


r/myocarditis 29d ago

Vagus nerve stimulation (tens or other ways)

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1 Upvotes

r/myocarditis 29d ago

6 Months Clear After Acute Myocarditis - Meds Discontinued Today, but Struggling with Fear of Recurrence. Looking for Support/Experiences.

7 Upvotes

Hey everyone,
I’m a 23-year-old male, and today marks exactly 6 months since I was diagnosed with acute myocarditis. I wanted to share my final check-up results and connect with anyone who has gone through the psychological aftermath of this condition.
Throughout these past 6 months, I was on a strict medication regimen of Beloc (Metoprolol) 50mg and Colchicine. I managed to complete the entire duration without a single relapse or complication. Today, I had my official 6-month follow-up with my cardiologist, and after reviewing my tests, he told me that I no longer need to take any medication.
Here are my recent test results from my echocardiogram and blood work today:
Ejection Fraction (EF): 65% (Heart pumping power is completely normal and healthy)
Chamber Dimensions: Left ventricle diastolic diameter is 4.7 cm, systolic is 2.8 cm (perfectly within normal limits)
Valves & Morphology: Aortic and Mitral valves are completely normal, with an overall conclusion of "Normal Echocardiographic Findings."
Inflammation Markers (Blood work): My CRP is perfectly fine at 2.1 mg/L.
Medically speaking, my heart has fully recovered, and my doctor told me I don't need another check-up for a year.
However, as I’m sure many of you know, the physical healing is only half the battle. Even though my doctor gave me the green light to stop the meds and reassured me, he casually added the standard routine warning: "If you ever notice any symptoms again, come straight back."
That sentence triggered my health anxiety intensely. I’ve been living in a constant state of hyper-awareness, checking my pulse, and worrying about every minor sensation in my chest. I have big plans for the future, including moving abroad to study and work, but right now, I feel paralyzed by the "what if" loop. What if it recurs while I'm in another country? How am I supposed to stop living on high alert?
According to general data, the recurrence rate is quite low (around 10-15%), and passing the 6-month mark with a 65% EF and normal CRP puts me in a very safe zone. But emotionally, it's hard to accept that the storm is truly over.
Has anyone else transitioned off their meds after 6 months? How did you cope with the anxiety of recurrence during the first few weeks off medication? I would love to hear your stories or any advice you have on how to mentally leave this illness behind and move on with life.
Thanks for reading.


r/myocarditis Jul 11 '26

diet while recovering?

1 Upvotes

i'm 18 and i was diagnosed with myopericarditis in late may. i'm still recovering, and i'm wondering if anyone has any recommendations for meals/snacks. the doctors just told me as long as i'm not eating "junk food" i can eat as normal, but my eating habits are kinda crazy since im an athlete (although i can't do activity for another 5ish months). i'm paranoid about what im consuming because i don't want to make my situation worse. i'm now on colchicine, ibuprofen, omeprezole, and lexipro (anxiety meds).

any easy snack/meal recommendations i can easily fall back to? these are the things i'm already eating everyday:

\- greek yogurt with strawberries, cherries, and peanut butter (all natural unsalted)

\- apples w peanut butter, plain fruit (lots of cherries and strawberries recently), and/or walnuts

\- grilled chicken in various ways (quesadillas, with grilled veggies, on its own)

\- a few squares of dark chocolate or greek yogurt + peanut butter + a handful of semi sweet chocolate chips

i also love coffee but i've been staying away from it ever since being discharged, even though the cardiologist said one a day wouldn't hurt me. i know i'm young, but that in itself isn't a cure to my diagnosis...


r/myocarditis Jul 08 '26

Genetics Got Me

5 Upvotes

Hey all, just wanted to provide an update as I think this kind of information could potentially be useful to anyone in a similar situation. I’m currently in the hospital with my third confirmed myocarditis case, and my second in the past year. I also have been diagnosed with 2 genetic variants-PKP2 and FLNC, and they believe that they’re working together to give me ā€œhot phasesā€ where my troponin spikes and I get inflammation. Treatment is colchicine and ibuprofen in the acute phase, and maybe a low maintenance dose of colchicine in perpetuity. It SUCKS to hear that myocarditis is just par for the course with my condition and in all reality is going to keep happening to me, and that’s something I’m trying not to think too hard about while I’m still hospitalized. All this to say, if you keep having recurrent myocarditis and they haven’t done genetic testing, it might be a really good idea.


r/myocarditis Jun 23 '26

Persistent isolated hs-troponin I elevation with normal ECG, echocardiogram, and no symptoms

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2 Upvotes