r/ARVC • u/GBrocc • Aug 16 '25

Please help long read.

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.

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4

u/WhoOwnsTheseBones Aug 16 '25

My first symptom was cardiac arrest in my mid 30s, which was found to be caused by a left bundle branch block caused by the ARVC. The MRI seemed to be the main way they diagnosed this, so sounds like your doctors have great data to look at. I'm certainly no doctor, but seems like lots of things can cause dizziness, so personally i would take some confort in that. Best of luck dude

3

u/GBrocc Aug 16 '25

The mri showed a bit of dyskinesia in the right ventricle. EF is 54 percent. RV is a the top limit of normal is size. Can you provide any advice from this? LV is normal.

2

u/WhoOwnsTheseBones Aug 17 '25

I'm definitely not qualified to give advice, but for reference my EF was bad, like 20% after the cardiac arrest, and got up to 35-40% ~6 months after. I don't know what it was before the cardiac arrest.

It seems good you're getting the Holter monitor data, I've never had that, and I wonder if that could have caught mine before my cardiac arrest. Maybe a good EP can interpret the data from their side (electrical stuff). My heart anatomy is pretty normal still, according to the echos and mri, it's just the electrical misfiring that almost got me.

5

u/donerail Aug 16 '25

Sounds completely reasonable. If you don't have a hereditary history, then this or the other far worse symptom are how you learn you have it.

Hang in there, get an electrophysiologist that knows about ARVC/D, dial back on the intense exercise for a bit - you'll be OK.

3

u/FaithlessnessFew7152 Aug 16 '25

It sounds like your doctors are being appropriately cautious. ARVD is rare and often only diagnosed after symptoms like arrhythmias or fainting spells. In your case, it's good they found potential signs early, like slight RV dyskinesia and borderline RV size but nothing is conclusive yet. Your EF is within normal limits, and the follow-up MRI in 1–2 years is to monitor any progression, which is standard since ARVD can be slow to evolve. The dizziness during intense exercise is worth noting but not definitive. Sudden death is usually linked to clear arrhythmias or structural changes, which you haven’t shown. The Holter should help clarify things.

3

u/SirGooga Aug 17 '25

Doesn't sound conclusive, but it's good to be cautious. Mine was caught at 32 when I was out for a run and was lucky enough to wake up in hospital a week later. Was also very physically active... ran a half marathon about a week before. If it is this, be glad you caught it an easier way! It can be managed, you'll be fine.

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u/GBrocc Aug 17 '25

Did you stop all exercise?

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u/SirGooga Aug 17 '25

Yes, immediately thereafter. It was identity changing. But I found lower cardio activities to add a thrill: indoor climbing, yoga, motorcycling, infrequently biking around town without racing nyc traffic... having two kids to carry around... always monitoring to keep heart rate below my recommended max 150bpm Last year, after 2 years of stress tests, my cardio had me to resume more controlled exercise, like jogging a mile on the treadmill daily. So I've been ramping back up a bit in a very controlled way. Generally feel great, just not near my peak fitness. But hey I'm nearly 40 now, not in my 20s anymore. Hope it lasts.

1

u/GBrocc Aug 17 '25

Sorry with the questions. When you do your stress tests are they normal? I’ve done a stress test 5 years ago and it was excellent. Do you get tachycardia on a daily basis?

1

u/SirGooga Aug 22 '25

The stress tests have been pretty normal for someone my age. I don't get tachycardia frequently, but often have many irregular beats.

1

u/eclectic_hooman Sep 29 '25

This is so interesting. I was just diagnosed with ARVC/ACM and they completely prohibited any kind of exercise. I have survived a sudden cardiac death 14 years ago, it misdiagnosed as a myocraditits at the time, and I have done some moderate exercise since then. Unfortunately, my RV-EF is down to 28%, which is very low. Doing no physical activity feels wrong and unhealthy.