It could be a combination of things causing the palpitations, lack of sleep, bit of anxiety, a massive contributor must be what happened with your brother, plus worry and waiting for the results of the genes tests.
I agree it is stressful not knowing a straight answer. ARVC is a tricky condition and is not well known so when I try to explain to friends and other runners what it is and why I can't race it isn't easy. I found it very frustrating at first as my cardiologist couldn't definitely say I had ARVC, I was borderline, I went to see Professor Sharma in London who specialises with athletes, he confirmed it was ARVC.
I understand entirely what you mean about running hard and not risking your life. If you can get to a yoga class it might help you relax, I sometimes look on You Tube for relaxing postures or deep breathing techniques if I'm feeling stressed...
Let me know how you go on when you see your cardiologist, fingers crossed nothing turns up on the genes test and you can find some peace.
If it's any help and this is only from my experience I find that cardiologists are over cautious, so if your results had shown any sign at all of ARVC your doctor would be urging you not to exercise, advising beta blockers.
You have been through a tough time, have you tried relaxation techniques or exercises before bed to try and help you sleep?
My first visits to my local doctors were because I had a low iron count, was feeling dizzy, heavy legged when running etc. The iron count went up, was still feeling more tired than normal a year on, kept going back to the doctors, they just said it was because I was getting older. My times in races were getting slower and slower was feeling really breathless and dizzy. I started wearing a heart rate monitor in training and noticed heart rate would rise to 220-240. The doctors then said I should take it easy but ok to carry on training, through advice from a friend I insisted on an appointment for an exercise ecg on treadmill. While waiting for the appointment which was cancelled twice, I'd carried on training and competed in a duathlon to qualify for the world championships! The week after this race had the ecg exercise test, showed eptopics, ventricular tachycardia, they kept me in hospital for 3 weeks, put me on beta blockers, had an ablation.
The palpitations sometimes manifest when I walk upstairs,walk up hills, they seem to vary. I'm seeing my cardiologist in September as I'm having a lot more dizzy spells, my hr and blood pressure has always been very low and the beta blockers make it lower.
Regarding exercise today, this is a tough one, like you say above, your friends and family say find another hobby. It isn't that easy is it? I'm a personal trainer and a running coach for 2 running clubs so running is literally my life. At the moment I take a core class for my club, do some weights for arms, jog a 5k once a week, cycle once a week, pilates, yoga, anything to keep active, while keeping heart rate at around 100. I'm concerned as my cardiologist says with ARVC the more you work the heart muscle the more quickly the condition will worsen.
Have you worn a heart rate monitor while training/running? This is what alerted me to realise something was wrong.
Hi again Patrik, extremely sad and tough what you've been through. Can understand how worried you must be and how you're at a loss to know what to do for the best. Also understand how your family want to make sure you don't exert yourself too much. I know a few people and myself included have mentioned on this forum about wanting to make sure we're safe and not make the condition worse while at the same time not become a couch potato. I get the palpitations more when in bed and it's worse when lying on the left side so I turn over otherwise can't get to sleep. Has your doctor done all the usual tests for ARVC and is absolutely convinced you haven't got it?
I agree Patrik the uncertainty is very frustrating. Can you speak to your doctor about trying different methods to stop the palpitations? If he's convinced you don't have ARVC and he's an expert on ARVC the best course of action would be to deal with the palpitations and then you can enjoy your running again without worrying.