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Hi 

Thanks for sharing your experience!

I guess and hope you are right about the doctors, it might just be a coincidence that I have started to have palpitations right now. I do exercise 5-6 times a week. 2 gym sessions, 2-3 run session and 1 Mtb ride. When this happened to my brother I was training for a sub 3h marathon, I have done 1:24 for the half and 39:40 for the quarter so I am far from being an elite runner but a fairly good and dedicated amateur runner. I was doing between 70-110 km/week of running at the time. Now I am more into trail running (did a ultra trail mountain marathons last year) but I feel a little reluctant to run all by myself in the forest...Today I run less and do not do interval session so my times has obviously been getting a lot slower. 

I do use HR monitor which records every single beat and afterwards I normally see some palpitation but it is just a single beat that comes to quickly. During an 1 hour run I might have 3-5 of those. There is no difference if I do a hard session like a long tempo run or a moderate long run and they can come anytime. I do sometimes feel a little dizzy when I run but it might just be my imagination and or something psychological. I am very aware of my heart when I run and really listen to my body, it is like sometimes I am just waiting for an arrhythmia during a run, especially when I think of my brother and how he must have felt when this happened to him, but it has not occurred yet and will hopefully never occur. 

What you say about exercising making the conditions worse seems to be common belief and is also something that sometimes makes me feel reluctant to train since I might have the genes. Some even suggest that hard training can trigger the decease.

For me the real dilemma is to not have a straight answer. If they do not find any genes there is still a small chance that I might have the disease. If I am healthy I would love to continue to run hard but at the same time it is no worth risking my life! (I am not sure I explain myslef but hopefully you understand what I am trying to say)

I am going to see my cardiologist again in a month or so to see if anything turned up on the gene test and I will talk to him again about the possibilty and risk for my future.

Patrik

Hi again

I have done exercise test, MRI, Echo, 24h ECG, 2h ECG, normal ECG and he says there are no signs of ARVC. He did say though that the signs that I had were so small that they were insignificant and assured me that as of today I do not have it. I am not 100 % convinced though. I emailed him about me getting palpitations but he did not sound very upset about it and told me that they did not see anything on the ECG. No wonder since I started to have them after I had done all the testing. 

What triggered your visit to the doctors in the first place if I might ask?

How do your palpitations manifest? Are there several in a row like an arrhythmia? I get a single beat that hits to early and directly afterwards a pause and then a harder beat. What might contribute to the palpitations is that at the moment I have some other factors in my life that keeps me worried so I do not sleep that well and are almost constantly tired when I wake up.

You said earlier that you gave up strenuous exercise, what kind of exercise do you do today?

He told me to stop taking coffee for a while but did not help. I do notice them on my run sometimes and since I use RR recording I can easily se them in Kubios HRV program afterward.

I feel them the most in bed when I am about to go to sleep or when I am sitting down so it might be a good idea to get up and walk around. My concern is that I have read that palpitations can be a symptom for ARVC and since it is possible to have ARVC that does not show any signs on the tests.

Another "problem" is that my family (my parents, brother and wife) is always reminding me of the risks. They say things like: Should you really run again? or Do not train to hard, it would be terrible if something happened to you. or You should find another hobby...

I know they say this just because they care but it makes me feel worse and even question myself if I should quit running. I have told them this so hopefully the quit saying stuff like that.

To make my story even worse I had 2 friends who also died from ARVC a couple a years ago, they were also competing in orienteering here in Sweden in my hometown. They also had cardiac arrest and despite that all of them (including my brother) had electric shocks within 10 minutes it did not help them. 

I have a sad story to share... 

My brother passed away in January this year from ARVC (it was discovered only after he died), he was 35 years old.  

He had experienced arrhythmias a couple of times before when he was exercising (running and spinning) and he felt dizziness as well. He was examined but they did see any signs (probably because they lacked expertise in ARVC, my doctor said he saw some signs on his ECG but stated that you needed to be an expert to see it). In his early twenties he was an elite runner but quit around 25 years old, he took it up again 3-4 years ago and trained 4-5 times/week the last year.

My younger brother and me have currently done all kinds of tests but they did not see any signs of ARVC.  First time I ever experienced palpitations was when I found out that my brother passed away from ARVC and that it was a family disease. Obviously it was because I was really scared and worried. Over the last month I had a real depression and I thought that I was going to die. Today I feel ok and I have started to run again, 4 times/week.  My doctor has 15 years of experience with ARVC and he said that at the moment I do not have ARVC.  What worries me is that I have started to experience palpitations a couple of times per day (sometimes once every minute and sometimes only once every hour) but nothing more serious like arrhythmia or dizziness. There is no difference when running or at rest regarding the palpitations. I told my doctor but he said I should not worry and that I could continue running.

We are also doing some genetic testing but so far they have not found any known gene from my brother’s sample.

What worries me is the uncertainty about all this because when you read about ARVC it says that sometimes it does not show up on the tests (in the early stage) but it can still led to cardiac arrest. I try to tell myself that I am healthy but it's not that easy all the time, especially when I am having several palpitations.

 Well, this is my story, anyone with similar experience? 

/Patrik