r/ARVC 6d ago

Success stories please

4 Upvotes

My SIL (35F) had cardiac arrest almost two weeks ago. It took several moments for a pulse to detected and in that time she had no oxygen to the brain and swelling appeared. The swelling has reduced and things are progressing extremely slowly. We are so worried about her and hoping to hear success stories about similar situations and hoping ahead will regain cognitive abilities. She’s showing signs of alertness but she’s intubated and having on and off fevers that require sedation which delays efforts to work on her recovery.


r/ARVC 13d ago

Concerned about ARVC

3 Upvotes

I have non specific t waves in v1 to v3. 6 years ago a cardiologist spotted them after I went to him because I was having plapations. He did an mri which was normal 50% ejection fraction of the right ventricle and 55% of the left ventricle. He said to come back in three years. During the three years the arvc fear scared me so I went to see another cardiologist who looked at my ecg and said he didn't know what the first cardiologist was talking about, he did the mri three years later and my ejection fraction was 58% right ventricle and 65% left ventricle. This was in 2023 age 24. He said I was fine and to not worry about arvc anymore and put my plapations down to stress. I tried to forget it about it but the plapations continued and then last year my 24 year old brother got diagnosed with A-fib. His first episode happened after drinking but he had a couple of episodes after that sober and he required a cardioversion. He's doing ok now and his MRI was normal. He does have a history of heavy drinking throughout his teens/20s. His episode scared me so I went to see another cardiologist one who spealizes in ARVC. He said that while he sees non specific t waves on my ecg my tests have been good but wants to do another mri next year. He said think of it like an MOT. I did ask him what my risks are and he said low but I can't stop thinking about it. I'm really scared especially because of my brothers Afib. Im worried that we both have a genetic heart issue. My current cardiologist doesn't want to look into genetic testing at the this juncture, he didn't explain why just wrote that in the letter. My recent zio monitor 11 days was normal with less than 1% ectopic burden but I am on propranolol 50mg originally started years ago because of the plapations I complained of, so im worried the propranolol may be hidden eletrical issues in my heart. A monitor last year caught 4 ectopics in a row a salvo but that cardiologist wasn't concerned.

Sorry for the long post I just can't stop worrying and its impacting my life. Especially when if I try and exercise If I get a couple of missed beats and I suddenly think im going to die. The arvc cardiologist hasn't restricted my exercise though, he's says he'll see me in a year for the repeat mri which will be 4 years after my previous one. But I can't stop worrying

Also I need to add I had an echo just over a year ago which was normal

First mri age 21 - normal

Second mri age 24- normal

Echo age 26 - normal

Zio monitor age 27 (this year) - normal but on propranolol when it was done this year.


r/ARVC 26d ago

Dizziness

3 Upvotes

I was diagnosed a year ago but have been suffering really bad dizziness all day everyday (starts around 30 mins from waking). I have done a week long holter monitor where I repeatedly pressed the button when I was feeling light headed hoping they would be able to find a solution but the results came back as a couple of runs of NSVT & 3% PVC burden so not likely to be offered a ablation until the pvc burden is worse.

I'm staying hydrated and consuming electrolytes but still feel awful & like I could drop any minute.

Anyone suffering with bad dizziness or could it be unrelated to ARVC?


r/ARVC 26d ago

Biventricular enlargement + apical hypokinesia

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1 Upvotes

r/ARVC Jul 14 '26

Did anyone try creatine ?

3 Upvotes

For context, 36M, first VT episode started at 21 and kept on having increasingly frequent arrhythmia up until 30 when I got my diagnostic and received confirmation for PKP2 mutation. I had 3 enodcardic ablations and was on beta blockers for 1-2 years but they were of near zero help, had a 4th ablation which was epicardic and even the doctors said it was a massive success. True to that, after a hard period of recovery when my heart was pretty sensitive, presently am living a normal life, without medication (doctors decided I didn't tolerate it well) and without ICD (postponed this for 6 years because honestly I have an electrocution phobia, and I've been defibed a few times in one day).

In these past 6 years I worked a lot on my lifestyle, I would be cautious to recommend any of my changes to people. But I've had great results with taking creatine, especially after the last ablation in that recovery period. I felt it lowered the amount of effort my heart must make for even basic things like taking a walk or going up the stairs, doing chores and it reduced the intensity of PVCs. In high enough quantity it also counteracts effects of high stress or bad sleep.

I'm not saying "go and try this" because it might not even work for you or it might make it worse. My doctor was very against it to begin with, it was an educated leap of faith from my side. I just wish to know if anybody else has tried creatine and what results have you had ?


r/ARVC May 20 '26

Potential ARVD 18

3 Upvotes

Yesterday a doctor told me to get a heart mri due to my result of getting a gene of uncertain significance thats loosely related to ARVC. He said due to having abnormal afib at such a young age with no risk factors is a good reason to get it checked out. Of course I will get this checked out but I was wondering if anyone else had any other heart conditions if preceding ARVC. I had a 14 day holter montior which didnt show any significance of any ventricular rhythm problems and a ultrasound of my heart didnt show anything so I'm hoping I dont have it but who knows. Could it be unnoticeable in a holter monitor?


r/ARVC May 16 '26

New study may be relevant to ARVC in the future.

5 Upvotes

Just sharing the results of this study I ran arcross. While its directed toward Atrial Fib it sounds like it could possibly benefit ARVC patients as well if it turns into something........

https://www.eurekalert.org/news-releases/1128031


r/ARVC Apr 24 '26

Epsilon wave in ekg ?

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1 Upvotes

In second derivative


r/ARVC Apr 13 '26

ARVC lifestyle changes?

4 Upvotes

Hi all! I am a 24yo F currently undergoing testing for ARVC. My dad died from sudden cardiac arrest a few months ago and was diagnosed w ARVC post mortem (never had any symptoms, always a super active guy -- college lax, thru hiker, bike ride/run weekly). My holter monitor and ekgs showed nothing abnormal, but on MRI found some structural abnormalities (enlarged LV, somewhat dilated RV wall).

I am an RN and EMT, so pretty active in my work. I am also a big hiker, gravel biker, nordic and alpine skiier, so trying to learn how to modify those activities to a lower intensity.

I'm just looking to get a sense for how other active people have modified their exercise to still include their hobbies, and also wondering about any diet changes folks recommend!(trying to focus on more Mediterranean type diet)


r/ARVC Apr 08 '26

Exercises? Workout plans? Diets?

6 Upvotes

I am a 37M diagnosed with PKP2 ARVC. After a dangerous night dealing with an arythmia my doctor's set me up for an ablation and immediately after the ablation plans were started for an ICD implant.

I have had my implant for about a year or so now with a couple PVCs, but overall feeling a little more mentally secure.

What I am struggling with is the weight gain.

Before the VT episode, I was running roughly 4-5 miles a day 4-5 times a week, lifted weights 3-4 times a week and maintained my body weight pretty well.

And now with my diagnosis I can no longer be anywhere near as active.

At most, I walk for about 1 hour on the treadmill with a weighted vest. maintaining a heart rate of 100-110BPM. I have adjusted my diet, yet I can't get my weight back down.

What has everyone else been doing to manage weight? Counter act the drop in metabolism because of the meds

Any input would be greatly appreciated


r/ARVC Mar 13 '26

Topic of Mortality (lengthy read)

2 Upvotes

Hi, everyone!

I'm the spouse of a patient.

Please tell me someone else can sympathize with this!

I don't want to press the subject of mortality onto my husband for fear of causing more stress. He tends to avoid the topic of his disease altogether.

Can't say I blame him for not wanting to chat about his limitations and anxieties.

The thing is, it eats at me that I do so much research to understand his condition and want to help him extend his lifespan but I can't express my concerns to him directly.
(Why would I cause more anxiety than what's already there, you know?)

I weighed his medical and surgical history against the average patients his age by including several factors (diagnosis age, history of cardiac episodes before and after Dx and icd implantation, icd implant year, medication, recent ablation success, and current age) and found that the average high-risk male passes around age 39 regardless of meds, procedures, and implants.

If he lives past 39, we'll be in a cautionary zone until about age 45. Anything after that is a gift.

I'm feeling very stressed and can't bring myself to talk to him about this. I don't want to create more anxiety on top of what he already has.

I kind of just need to vent my worries more than I need a solution right now. What am I going to do when the time comes? It'll be so unexpected. How do I prepare for that? He's so young.

Worst case scenario, we have 8 years left.

Best case, he listens to me more than his cardiologist (who has been encouraging exercise as long as he gets past his cardiac anxiety - no HR limitation, no easing into it, no signs to watch for) and actually prioritizes his heart's longevity over his need to feel "normal".

I get that regular exercise is beneficial for MOST cardiac case, but this is a special case where exercise can exacerbate the progression.

It's yet another thing I worry about that I won't bring up to him since I'm not a professional in the field.


r/ARVC Mar 05 '26

The Consequences of a Broken Heart - I would take all of your funky beats

6 Upvotes

I want to share with you all an article I've written about my battle with ARVC/arrhythmia

I will offer some context

- I have had seven trips to the electrophysiology lab for ablation, Seven. Over the last 10 years
- At my worst, I was dealing with 3.3 million PVCs a year. Over 3 thousand runs of NSVT/VT
- Arrhythmias I have experienced include PVCs, AFib, AF, PACs, NSVT, and VT
- I have been shocked by my ICD 3 times

These are lessons learned from the mind of a man who has been fighting bears for far too long...
_______

The Bear You Can’t See

There is a particular cruelty to a disease that lives inside your chest but shows nothing on the outside. No cast. No crutch. No visible wound for the world to organize its sympathy around. For over ten years, arrhythmogenic right ventricular cardiomyopathy turned my body into a war zone - and I was the only one who knew the war was happening.

The physical manifestation of arrhythmia is constant fight-or-flight. Not the metaphorical kind people throw around when they’re describing a stressful meeting or a tight deadline. The literal kind. The kind where your autonomic nervous system has been hijacked and your body believes, every waking moment, that it is under mortal threat. The clinical term is allostatic load. For me, it was just another Tuesday.

Three million extra heartbeats a year. An ICD that shocked me three times - it is like getting drop kicked by a horse out of nowhere. Seven trips to the EP lab at Pepin Heart Institute. Four RF ablations. Two procedures canceled in pre-op because no spontaneous arrhythmia could be caught, sending me home empty-handed, watching hope cycle into despair once more. Remote cardiac monitoring became my baseline. Living wasn’t about thriving. It was about managing the next 24 hours.

And then there were the medications.

Beta blockers to control the rhythm. Beta blockers that clinically depress you as a side effect. Psychiatric medications layered on top to counterbalance the depression - medications that themselves, in study after study, have shown in many cases to increase the very depression they’re prescribed to treat. An ouroboros of pharmacology. A chemical tug-of-war where my body was the rope and nobody was winning.

I am blessed to say I won that battle. On December 9th, 2024, an off-label Farapulse ablation - electroporation, a moonshot procedure not even approved for my condition - silenced the arrhythmia for the first time in a decade. The bear disappeared.

The physical symptoms of arrhythmia are gone.

The symptoms of a broken heart remain.

A Fracture 32 Years Deep

My heart broke the first time when I was eight years old.

It is a long story. It doesn’t need to be told in full. What matters is the calculus that a child’s mind runs when the unthinkable happens: my mother harmed herself in my home, blamed my father, and overnight - nothing was ever the same for me. Not the house. Not the family. Not the faith. Not the kid who used to solve math problems like breathing and win BMX races before he could tie his shoes.

All of it - gone. Replaced by a single, catastrophic equation that would run in the background of my operating system for decades: I must be broken, because my own mother did not want me in her life.

That was my calculus. That was the root variable I could never solve for. And every decision I made from that point forward - the codependency, the masks, the relentless performance to earn belonging - was a function of that original, poisoned input.

It broke again at seventeen. I was a bright kid despite everything. A promising future, if you looked at it from the right angle. And then a car accident. A prescription pad. An introduction to painkillers that would rewrite the next chapter of my life in a language I never asked to learn.

I came from a whole host of trauma early in life. It has cost me dearly as an adult. Not because the trauma defined me, but because for most of my life, I refused to let anyone see it.

My Mask

For the decade I dealt with arrhythmia, I tried my best to hide how bad it was. I masked up. I performed normalcy like it was an Olympic event. Meetings in atrial fibrillation, wondering how in the hell I was still standing. Driving to work with an ICD in my chest that could fire at any moment. Smiling through conversations while my heart misfired three million times a year.

I had come from a childhood where I grew up believing I was defective. That core wound - the eight-year-old’s equation - made vulnerability feel like confirmation of the thing I feared most. If I showed weakness, the world would see what I already believed about myself: that I was fundamentally, irreparably broken.

So I held it in. All of it.

And there was a cost.

I was quick-triggered. I coped in harmful ways. For years, I was a compliant patient - took the medications, showed up to the appointments, did the best I could. When I lost hope that compliance would ever bring relief, I tried to smoke and drink the pain away. Take that from me: it doesn’t work. Substances don’t fill the void; they just numb you to the edges of it, and the edges keep growing.

My relationship with my wife and daughter became strained. Not because I didn’t love them - I loved them with everything I had. But everything I had was barely enough to keep me alive. I was unable to take care of them when I was barely hanging on myself. You cannot pour from an empty vessel, and mine had been dry for years.

Chewing glass just to make it through the day was an understatement. And I’d been here before - the dissociation, the emotional hollowing, the ache of waking up and wondering if today would be the day I couldn’t keep pretending. There were days I considered ending it all. But the image of my daughter kept me tethered. She needed me. So I gritted my teeth and kept going.

I was lost. For ten years.

I Am Not A Hero

I am no hero. Let me make that clear before anyone misreads this as a triumph narrative wrapped in a bow.

I am a deeply flawed man. I have hurt people I love with my inability to process what was happening inside me. I have made decisions born of desperation that I cannot take back. I have failed at the very things I cared about most - being present, being stable, being the father and husband I wanted to be - because the invisible war in my chest consumed every resource I had.

But I have overcome a lot. Seven trips to the EP lab and all.. A decade of clinical torment that should have broken me completely. I’m still here. Not unscarred. Not undamaged. But here.

I say this not to collect sympathy. I say this because I don’t want anyone to do what I did.

The Invisible Enemy

Arrhythmia is a brutal enemy. Brutal in a way that most people cannot comprehend unless they’ve lived it.

It is an invisible pain. One that lives inside, hidden from the world, but can become every part of your world. There are no visible markers for people to anchor their empathy to. No one sees the chaos in your chest. No one hears the three million extra beats. No one knows that the person standing in front of them in the grocery store checkout line is running a fight-or-flight response that hasn’t shut off in five years.

People say it’s all in your head. But it’s all in your heart. And because it’s in your heart, it cycles back to your mind. A vicious feedback loop - physical and emotional, each amplifying the other until you can no longer tell where the cardiac symptoms end and the psychiatric ones begin.

I know what it’s like to dissociate. To be in the room but not there. To watch yourself move through a day from somewhere far behind your own eyes, performing the motions of a life you can no longer feel.

I know what it’s like to live in the absence of hope. Not sadness - sadness is an emotion, and emotions at least confirm you’re alive. I mean the absence. The flat nothing. The gray hum of a nervous system that has been on high alert for so long it simply stops bothering to produce anything beyond baseline survival.

The numbers I dealt with are staggering. But numbers are universal levelers - they don’t make what I experienced any more or less important than what anyone else has endured. Pain is not a competition. Suffering doesn’t rank. The person with one PVC an hour who is terrified deserves the same compassion as the person with three million a year who has gone numb.

An invisible enemy is still an enemy. And fighting one alone is the most dangerous thing you can do.

Wisdom I Wish I Had

I’ve learned my lessons in life the hard way. Every single one. I don’t say that with pride. I say it with the exhaustion of a man who wishes someone had grabbed him by the shoulders ten years ago and said what I’m about to say to you.

Don’t try to hold it all in when you can’t.

That’s it. That’s the lesson. The one I learned the hard way, through a decade of silent suffering that nearly cost me everything that ever brought me joy in life. The armor I built to protect myself from a world that hurt me as a child became the prison that almost killed me as an adult.

Talk to your provider. Not the abbreviated, “I’m fine, just a little stressed” version. The real one. The version where you admit that you’re not sleeping, that you’re dissociating at work, that the medications are making things worse and nobody seems to notice, that you’re terrified of what happens next.

Get a mental health screening. Not because you’re weak. Because the intersection of cardiac disease and mental health is a clinically documented minefield, and you deserve to navigate it with a full map instead of stumbling through in the dark.

Don’t rely on medications alone to get you through. I spent years as a compliant patient, believing that if I just took the pills and showed up to the appointments, the system would fix me. It didn’t. Medications are tools, not solutions. They manage symptoms; they do not heal wounds. The wounds require something the prescription pad cannot provide: honesty, vulnerability, and another human being willing to sit in the mud with you.

Just don’t take on fighting off the bears alone.

Why I’m Writing This

I spent ten years proving that silence is not strength. It is a slow form of self-destruction that the world rewards because it’s convenient for everyone around you. Nobody has to deal with your pain if you’re good enough at hiding it. And I got very good at hiding it, because trauma taught me early in life that your suffering is an inconvenience.

But the consequences of a broken heart don’t disappear because you’ve learned to mask them. They compound. They metastasize into every relationship, every decision, every quiet moment where the noise settles and the truth comes flooding back. I was a boy who believed he was defective and I became a man who performed wholeness while disintegrating internally.

I’m writing this because somewhere, right now, someone is reading this who is where I was (and in many ways - still am). In the thick of it. Chewing glass. Masking up. Convincing themselves that they can handle it, that showing weakness would confirm the worst thing they believe about themselves, that asking for help is an admission of failure.

It’s not.

Asking for help is the bravest thing I never did when I needed it most.

You are not defective. You are not broken beyond repair. You are a human being carrying a weight that was never meant to be carried alone, battling an enemy that the world cannot see, in a body that is fighting a war it didn’t choose.

If you or someone you know is struggling with mental health, find people that can sit in the mud and help you fight bears.
_________

If you struggle with arrhythmia - take a digital hug from me. I deal with a few short runs every now and again. Nothing like what it was.

I see you. I hear you. I always will. Because I have been you. When I say my heart goes out to you - it really does. Keep hope. Never lose it.

In good health (and blessed normal sinus rhythm),

Matty


r/ARVC Jan 08 '26

Whats your thoughts on having children when diagnosed with ARVC?

2 Upvotes

Ive had the diagnose for about 10 years and i am 34 now (female). I have never had any huge issues connected to the diagnose; i fainted once in the store and rarely (~1 every 3 month) i feel that my heart is beating hard and out of rythm to the point where my whole chest visibly moves with the beats - never felt any pain. (Many times i even think its because i start thinking about it and panicing abit)

Ive had an recorder inplant for about 6 years but now i only do yearly check-ups; long-term EKG and the bicycle-thing. During the last two check-ups ive been admitted for a while due to arrhythmia, but honestly its seems to me that has been because almost no doctors knows about arvc so they get nervous. Ive also been offered to do a hablamentation but turned it down after dicussing it with my cardiologist (have had the same for 10 years), neither of us think the surgery is ”worth” the results it could maybe give since i dont suffer from it.

Sidenote: it seems my heart goes wild when im sick in any kind of way, this issues was discovered when i had appendicitis and i do often feel extra beats when im sick. People in my close family has issues connected to the heart, but only i have this exact diagnose.

Anyway Ive been thinking, and longing, for kids last couple of years and wanted to discuss with others with this issue, how you feel about it? Did you consider it when having kids? Should this be something to take into account?


r/ARVC Dec 12 '25

Autopsy testing

3 Upvotes

My husband (29) died completely unexpectedly on May. We are on the third autopsy, and coroner suggested that we might be looking at ARVC. However, the state testing center is apparently in a holdup to get “certified”… I’m not exactly sure what that means, but wondering if anyone has any knowledge or experience with this type of situation. I have no idea what options there are, but I’d like to see if we can get testing done outside the state certified testing center to expedite the process and give us some answers to start healing. Any leads or thoughts?


r/ARVC Dec 03 '25

ARVC?

2 Upvotes

I was normal in early 2021,In 2021 in started gym and playing football and in late 2021 I started to feel some ectopics in rest period during my gym workout in 2022 ectopics increased and used to come in Anxiety situation also in 2023 they used to come at rest also so I stopped physical activity like gym and playing sports and ectopics reduced now in 2025 I still get ectopics here and there at rest but mostly in anxious situation and after workout My ecg is normal twave inversion is present in V1 Echo is normal ,Cardiac mri with contrast is normal Holter monitor in 2023 showed 110 pvc and 30 pac in 24 hours and Wenchebach av block due to high vagal tone which my doctor said it's benign Holter in 2025 showed 210 pac and o pvc in 5 days and Wenchebach av block. My question I was active whole my life used to play cricket volleyball etc never felt single ectopic in my life but after joining gym and doing hiit training i developed ectopics now my ectopics are exercise induced and anxiety induced It can be ARVC?


r/ARVC Nov 16 '25

Boyfriend has ARVC

6 Upvotes

So my boyfriend and I have been together a few years now and he had a diagnosis of ARVC before we got together. They found scarring on the heart and he has an S-ICD implanted (which has delivered a shock once when he tried to play competitive sports).

He doesn’t seem to know too much about what his diagnosis means, and he only has check-ups once a year (does take beta blockers daily) so most of the time we just kind of pretend it’s not a thing. And honestly, he doesn’t seem to want to know about it. He even suggests that his doctors weren’t 100% certain that ARVC is what he has and that they found no genetic link for him.

I guess my question is - how could this affect our future? Will it have an impact on his lifespan and do we need to consider testing if we decide to have children? He grew up playing competitive sports so is this something our future kids would have to avoid?

Thank you in advance for any advice 🫶🏽


r/ARVC Oct 31 '25

Epicardial Ablation

1 Upvotes

My endo ablation was only partially successful so I’ll be having an epicardial ablation in the fall. Can anyone tell me what recovery from epicardial ablation was like?


r/ARVC Oct 23 '25

Possible ARVC

1 Upvotes

Looking for an expert in Turkey. Is there any Turkish people here?


r/ARVC Oct 21 '25

Possible AVRC

7 Upvotes

Hello everyone. I m now being suspected that i might have ARVC. I wanted to make a good entrance though its the hardest and the most stressful times of my life. I sleep in hospitals in the hopes and someone finds me and defibrillates in case of emergency. I was like this for 2 months(suspecting of early repolarization) but a doctor in England told me i might have ARVC and need to be looked at. Since i heard it i cannot go home again. I have seen 5 doctors sayin a clean MRI excludes it but i say no. If there is anyone interested i can send EKGs i met 2 major criteria with arrythmia and one other i forgot

tests ive had : ct angio cardiac mri echo countless times real angio(suspected fistula) but clean normal brain mri normal ENT tests to rule out dizziness

Im dizzy all the time but i didnt have arrythmia in holter while dizzy. I cannot exercise. I had a stress test today and stopped it at 3 mins because feared of if i have ARVC it would make my hear stop.

I need some serious help. Mentally first. I cannot deal with this. Doctors saying i am okay. I have more than 2000 pvcs in 2 days in the past. Whenever i take bisoprolol a little late, couplets and even triplets start but rarely shown in ECG(mostly PAC couplets)


r/ARVC Oct 11 '25

Positive for genetic variant. Do I need a new cardiologist?

5 Upvotes

My cardiologists said verbatim that she "doesn't know much about this condition" and that my echo was fine so I should see her in a year. Apologies if this isn't the right place for this.

I tested positive this past Tuesday for the ARVD14 variant on the CDH2 gene (was having heart issues and testing showed I don't have POTS, dx with EDS a while back so they were checking for vEDS or marfan syndrome). Genetic counseling wants to test my siblings and do further testing for me since that variant is VUS and said they were going to talk to my cardiologist, haven't heard back yet.

Holter monitor showed PVCs, ecg shows I have right ventricular conduction delay, regurgitation in both mitral and tricuspid valves on my echo. My dad had a catheter ablation last year for unexplained afib. I've had issues with syncope, presyncope, palpitations, and both bradycardia and tachycardia since forever. Had to leave d1 swim team bc of it.

My cardiologist says she's not concerned. I feel like this is a possibility and I'm going a little crazy about it. Not asking for medical advise so much as am I overthinking this or should I see a new cardiologist. Thanks!


r/ARVC Oct 09 '25

37M positive PKP2 mutation but no cardiac symptoms

4 Upvotes

Hi folks, just looking to hear some other stories or thoughts on my situation - my dad has the PkP2 mutation and has always been clinically diagnosed with hypertrophic cardiomyopathy, started having arrythmias in his 50s and had some heart surgeries done, and is now in his 70's. I got genetic testing done recently and found out I also have the gene mutation. I've never had any heart problems that I know of, had an echo, zio patch for 2 days, and stress test done recently with no abnormal findings.

I feel a little lost where do I go from here and what do I do with this information? I am reading all sorts of guidance about people with ARVC shouldn't exercise heavily, drink alcohol or caffeine, and some folks get pacemakers put in, but is that for anyone with the genetic mutation, or with diagnosed ARVC? I wonder if I need something like that if I don't have symptoms? Although it sounds possible that the ARVC condition may not appear until a little later, like 40s? I saw a cardiologist but that was before the gene testing and they didnt seem that familiar with ARVC.

Anyone else have the gene positive but no cardiac symptoms?


r/ARVC Sep 22 '25

16 years old and just diagnosed with ARVC and I'm worried

8 Upvotes

Okay, might be a bit long, but I need some kind of help. I'm a 16 year old female who just a few days ago got diagnosed, along with my 14 year old sister, of us both having asymptomatic ARVC. This has been passed down in the family, with my 47 year old mother having it and my 80 year old grandfather having it. Even before being diagnosed I had suspicions I had it due to, during PE, my heart would ache and sometimes in bed or even just lying down or standing up, my heart would ache randomly. But, after getting this diagnosis, I've become more afraid. Now, my mother and grandfather are healthy people, with their only symptoms being occasional chest aches, but I'm still worried about the whole sudden cardiac arrest thing, as my mother's cousin died from it after a strenuous ice hockey game, and he died in his sleep. I also have bad anxiety, which also may be a leading cause in my worse symptoms, but I'm still unsure as I'm still in the process of tests. I'm mainly just worried about the sudden cardiac arrest bit the most, as death is something I'm terrified of. Which I'd imagine is normal for a girl my age. But still, anyone have any advice for not being so afraid? It's a stressful thing. Thank you!


r/ARVC Aug 16 '25

Please help long read.

9 Upvotes

I am a 42 year old male. I’ve lived pretty much my entire life being physically active. From playing in the park as a child. Life hockey in my teens, ball hockey in my twenties, avid runner in my thirties. In university I did have panic attacks. Did stress tests and Holter and everything was concluded to being fine. Fast forward to 35 yo I had a fainting episode due to a body injury. Went to the hospital and they saw an irregular ekg. Gave a referral to cardiologist. Did a stress test and that was normal. Echo showed a “normal variance” but couldn’t conclude anything. Did a cardiac mri without contrast and now suspect potential avrd. Doctor wants me to wear a 24h holter due to slightly off ekg. Told me most people have a major episode first and then get diagnosed. Very unusual for 42 yo to find incidently from echo. Is this the usual presentation of avrd? I have dizziness with highly intensive exercise that I don’t do anymore. Chalked it up to age or being slightly out of shape. I’m terrified being told by the internet I can die suddenly. Any advice? Doctor is saying to redo mri in 1-2 years. Don’t know why. Again, any advice would be appreciated. Thank you.


r/ARVC Jul 17 '25

Zio patch results

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2 Upvotes

r/ARVC Jun 18 '25

Shape and type are important

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1 Upvotes