It looks like you're new here. If you want to get involved, click one of these buttons!
Thanks for your post Neil, like you say every case of ARVC seems to be different. When I was first in hospital in March/April this is what frustrated me most as I couldn't seem to get a definite answer whether I had ARVC or not.
When I saw the specialist in London he was adamant I do have it so now I feel a lot more positive as I have some definite guidelines.
I've asked about coming off the beta blockers as like you say they make the resting heart rate very low, as they control my arrthymias very well I need to stay on them. They also make my circulation poor which is a bit of a nuisance as I get chilblains, numb hands and feet that turn white, I've heard that is Raynauds syndrome so wonder if anyone has any tips to help this? I'm drinking ginger tea on colder days at the moment and it seems to be helping.
I was thinking of setting up an ARVC helpline or forum or something like that as the condition is so varied and I think it would help people who are first diagnosed to understand a bit more about it.
Neil, do you still race and train, if so, how often?
I was doing a lot of running 5 years ago, when on Sunday 20th August, I did a 7 mile in the morning, read runners world and felt inspired to do a second run in the afternoon.
A mile into my run, I felt izzy, I then collapsed and blacked out. Albeit I was in the middle of a field, a lady and his little girl biked pass me and called 999. Threee weeks lates and a MRI scan I was diagnossed with ARVC and had an ICD impanted.
I was told that I had to limit my running, The Beta blockers did slow me down and running was not the same. I kept up 4-6 miles.
On boxing day 2007, running up a hill, slowly. I experienced my first ICD shock, then my second. Ironcially 100 yards from the first location I had collapsed. I had a heart rate montior on, get up when my heart had settled down and walked home.
I gave up running, but got into walking. I hated the "slow" feeling of the beta blockers and stopped talking them, against the doctors advice.
Unfortantely I was walking on the 21st September 2011, when I suddenly felt dizzy and then thud, the first of 7 ICD shocks. This time I could not get up, but had iphone and called amublance. I was in a middle of a field, but no where near the other two locations.
I have created a facebook group called "ARVC UK", please feel free to have a look and become a member. I started it due to belong to "hope for ARVD", which is based in the USA and found support in talking to others with the condition, but wanted to find UK based patients.
I am currently being reviewed for the ablation process. I've dealt with the Heart hospital in London, but now based at Bart's in London, plus have seen Prof. Schilling via the AF Centre at London Bridge.
Thanks for that information, amazing and good idea that you've set up a Facebook page, I've requested to become a member.
From what you say on the page, it sounds like you don't do much exercise any more? From the other posts on this forum it definitely is clear to me that every case of ARVC is different.
I've had 2 opinions, Dr Sharma in London and Dr Brown at Wythenshawe heart unit, both say because my arrythmias are so frequent if I did have an ICD fitted it would be giving me shocks several times a day. I'm on a very low dose 1.5 beta blockers which makes the arrthymias slightly less frequent. Doctor Sharma advised I should keep my heart rate below 100 when doing any form of activity. I can't have a higher dosage of beta blocker as my heart rate and blood pressure are already low.
As for the cardio exercise, gone are the triathlons, half marathons etc, I do a walk/jog 5k each week at my local parkrun and just coach at 2 running clubs, plus exercises in the core class I take. I'm getting more into walking to try and keep some level of fitness.
I do feel this advice/form of action is the best for me and not sure what other options there would be in my case.
When I was in hospital for a month last March, the doctors at first thought I should have been dead because my heart rate was all over the place, high (240 for up to an hour at a time). The alarms on the monitors were going off constantly throughout the day and night especially during the night as my heart rate used to go down to 26ish. Doctor Brown seems to think the ablation I had has helped matters slightly. By arrthymias I mean the irregular heartbeats, my husband says he can sometimes hear them and when I had the 48 hour ecgs the results showed very regular occurences of irregular heartbeats and triplets/eptopics.
Both the doctors haven't totally ruled out an ICD, they said it wouldn't be right for me at this time.
I thought the ICD was to regulate the heartbeat if you're having arrthymias to shock the heart into a regular pattern?
We came to the conclusion that I'd give up strenuous exercise and training, keep the heart rate around 100 and not have an ICD for the time being.
From the consultants letter after my 48 ecg results In May - he states if I had an ICD fitted, I would have had several shocks for fast VT creeping into the VF zone which would on balance prove extremely unhelpful.
I'm apparently in the early stages of the condition so reckon I'm lucky.
It sounds like I could be in the shock only category, although next time I see the consultant I will check.
Thanks for your comments - stay safe and happy
Seems this thread has been dormant for a while, but I wanted to throw my experience in for good measure. Up until Nov 2010 I was ran 25-40 mpw and trained for duathlons and the like (terrible swimmer) - then out of the blue one evening at age 34 I had a cardiac arrest and was saved by the quick and determined action of a friend at a dinner party. Long story and coma short, I was diagnosed with ARVC, received an ICD and emerged very glad to be alive but wondering what kind of running, cycling and swimming I could do. As everyone else here says, there's not very much definitive advice. As an American, I would have been told back home to give everything up, but my consultants at the Heart Hospital here in London are more vaguely open to moderate exercise. I'm not sure what that means, given I used to do a lot of hill training, intervals, fartleks, etc. Like a lot of others I'm on beta-blockers which slows things down, but I've taken the view that life - while longer than it might have been - is still pretty short, and I don't want to die of clogged arteries or insanity on the sofa. I run most days 30-30 minutes - with 10 minutes of warm-up and 10 min cool-down, and some form of very short interval, exercise (lunges, strides e.g.) in between. I try to get in a longer (50-60 min) run every weekend, but do that along 10-and-1 lines (10 min run, 1 min walk). In fact I will often walk a minute here and there during most runs for a bit of recovery.
The first few months of running after the cardiac arrest were pretty miserable - sluggish, heavy. But a year and a half on, things have settled down and running is a pleasure again - if a much slower one. There hasn't been any further deterioration in my right ventricle (if anything a slight improvement from the shocked state after the cardiac arrest and multiple defibrillations), and I've been fortunate enough not to have experienced any ICD shocks yet. I realise this is still early days, and this is anecdotal/particular to my heart, but for what it's worth, it seems possible to regain some semblance of normality.
Now I'm just waiting for those stem cell treatments to come online so that we can all regenerate healthy heart tissue!
Hi Andrew, good to hear your ARVC experience and what you're up to now. You got through it and have adapted to the condition. There's not many of us about with it so it's good to chat about the different levels to try and gain more of an insight into it all.
Do you wear heart rate monitor on your runs? How often do you see your cardiologist for check ups? What's that about stem cell treatments, sounds very interesting!
I used to wear the heart monitor when I re-started running but have stopped: frankly the heart rate doesn't move very much outside a 50-140 range, even when I try (damn beta-blockers).
I saw the cardiologist several times in the first year, but now they don't want to see me but once a year. My ICD sends data to the Hearth Hospital remotely every three months. Last time I was actually there (Sept) they said that the ICD had monitored two instances of elevated (180+) heart rate but I hadn't felt faint or even noticed them. No news good news, it seems.
True what you say about the beta blockers. You've definitely got the ARVC under control, well done to you. Definitely a balance of enjoying life and moderate exercise to keep you sane!
Glad to hear you've not had any shock therapy so far, long may it continue. With luck the battery will last for ages if it has little to do - its the shocks that wear it out.
Hi ,i had a ICD fitted Feb 2011, ( complete heart block) then due to infection ,had it removed and replaced on the other side of my chest in April this year,on Ramopril,and Beta Blockers,also Prednisolone(steroid).
This heart block came out of the blue...well i wasn't feeling right for a while,tired etc,still run 5-6 times a week-40 50 miles,never going to stop what i enjoy,and im set at 60 beats per minute...obviously a success story,Visit the Brompton for check ups.can't praise them enough...good luck all.
Hi Jarhead, thanks for your post. Is your heart condition ARVC?
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?
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.
Patrick, sorry to hear about what happened to your brother, that must have been a terrible shock to you. It's easier to say than do but just try to ignore the palpitations, if they are bothering you try getting up and walking around - I've found this works for me and is one idea cardiologists suggest. I can get them on runs too (I pick them up on my hrm if you set it up right) but you can't feel them then. I have come across people who ended up getting put on a beta blocker just to calm down their rhythmn a bit but that's rather extreme action. When are they worst?
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.
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 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?
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.
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.
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.