ARVC Is there anyone out there cycling with this condition ?

Welsh boy wrote:

I had an ICD fitted about 6 years ago at the age of 50 (but for hypertrophic cardiomyopathy, another usually fatal condition where the heart goes into fibrillation which as my consultant said is a rythem not compatible with life) and have been on beta blockers and asprin ever since.

As a result i cannot push my pulse rate too high so i have had to make several adjustments to my riding, i can no longer punch up hills or chase people i see in the ditance, instead i have to drop a gear on the hills and let people ride away from me rather than chase them down.  Having ridden at internation level for several years this was a very hard adjustment to make but i came to terms with it on the basis that i would rather modify how i rode rather than either (a) die or (b) not ride at all.

The effects of the beta blockers is that my cardio output is reduced a little so i am not as energetic as i used to be and i feel the cold something terrible, i almost always have cold hands and feet apart from 2 weeks a year when we go for a holiday in the Med.

When the defib does go off it hurts, it hurts a lot (luckilly ever time mine has gone off i have been in bed) but at least it is doing the job it is designed to do.  Once you are over the physical effects of the operation (which will probably take longer than your consultant tells you as they filled me with antibiotics from a drip before the operation which left me as flat as a pancake for a long time) you will have the mental adjustment to make, some days i do wonder if i was lucky to survive the incident or not.  Obviously this is just a phase where i am feling a bit low and sorry for myself, of course i was lucky to survive and i am enjoying a good quality of life since being resucussitated and put back together.  My advice to you would be get back on your bike as soon as you can, enjoy short gentle rides as soon as possible and be greatful for every ride you can do, there is no point in them sorting you out if you dont get back to a normal life again.

Do you know if you will be on beta blockers or something like amiodorone to regulate your herat rythem?  I found both gave me very bad nightmares (to the point where i didnt think that i would be able to continue taking them) but these do ease, i found that the nightmares reduced in duration and the time between them increased, now i have a spell of maybe 4 or 5 nights of nightmares every 5 or 6 weeks which i just put up with, i can cope with that but when i didnt know if they were going to be a permanent part of my life they were very difficult to deal with.

I hope you have a successful operation and speedy recovery and if you ever want to drop me an email (it sometimes help to unload on someone who isnt a family member) and chat with someone who has gone through a similar experience drop me a line at stephen.bulpitt [at] yahoo.com with a heading of ICD and i will be happy to help in any way i can.

Hi Welsh Boy

I too have unbelievable vivid dreams almost every night due to the beta blockers. I have had to reduce the dosage down to 2.5mgs. per day otherwise I can't function  on a higher dose. That's probably because my heart rate is still only 60bpm and that is only thanks to the pacemaker. It used to be around 40bpm 4years ago and I suffered from heart block before my VT episodes and ARVC diagnosis. Recent research now suggests that heart block may be a precursor to ARVC. Heart block is not an uncommon condition in highly trained athletes so if any of you out there have this condition just take care.

Welsh boy wrote:

I had an ICD fitted about 6 years ago at the age of 50 (but for hypertrophic cardiomyopathy, another usually fatal condition where the heart goes into fibrillation which as my consultant said is a rythem not compatible with life) and have been on beta blockers and asprin ever since.

As a result i cannot push my pulse rate too high so i have had to make several adjustments to my riding, i can no longer punch up hills or chase people i see in the ditance, instead i have to drop a gear on the hills and let people ride away from me rather than chase them down.  Having ridden at internation level for several years this was a very hard adjustment to make but i came to terms with it on the basis that i would rather modify how i rode rather than either (a) die or (b) not ride at all.

The effects of the beta blockers is that my cardio output is reduced a little so i am not as energetic as i used to be and i feel the cold something terrible, i almost always have cold hands and feet apart from 2 weeks a year when we go for a holiday in the Med.

When the defib does go off it hurts, it hurts a lot (luckilly ever time mine has gone off i have been in bed) but at least it is doing the job it is designed to do.  Once you are over the physical effects of the operation (which will probably take longer than your consultant tells you as they filled me with antibiotics from a drip before the operation which left me as flat as a pancake for a long time) you will have the mental adjustment to make, some days i do wonder if i was lucky to survive the incident or not.  Obviously this is just a phase where i am feling a bit low and sorry for myself, of course i was lucky to survive and i am enjoying a good quality of life since being resucussitated and put back together.  My advice to you would be get back on your bike as soon as you can, enjoy short gentle rides as soon as possible and be greatful for every ride you can do, there is no point in them sorting you out if you dont get back to a normal life again.

Do you know if you will be on beta blockers or something like amiodorone to regulate your herat rythem?  I found both gave me very bad nightmares (to the point where i didnt think that i would be able to continue taking them) but these do ease, i found that the nightmares reduced in duration and the time between them increased, now i have a spell of maybe 4 or 5 nights of nightmares every 5 or 6 weeks which i just put up with, i can cope with that but when i didnt know if they were going to be a permanent part of my life they were very difficult to deal with.

I hope you have a successful operation and speedy recovery and if you ever want to drop me an email (it sometimes help to unload on someone who isnt a family member) and chat with someone who has gone through a similar experience drop me a line at stephen.bulpitt [at] yahoo.com with a heading of ICD and i will be happy to help in any way i can.

Hi Welsh Boy

I too have unbelievable vivid dreams almost every night due to the beta blockers. I have had to reduce the dosage down to 2.5mgs. per day otherwise I can't function  on a higher dose. That's probably because my heart rate is still only 60bpm and that is only thanks to the pacemaker. It used to be around 40bpm 4years ago and I suffered from heart block before my VT episodes and ARVC diagnosis. Recent research now suggests that heart block may be a precursor to ARVC. Heart block is not an uncommon condition in highly trained athletes so if any of you out there have this condition just take care.

Welsh boy wrote:

I had an ICD fitted about 6 years ago at the age of 50 (but for hypertrophic cardiomyopathy, another usually fatal condition where the heart goes into fibrillation which as my consultant said is a rythem not compatible with life) and have been on beta blockers and asprin ever since.

As a result i cannot push my pulse rate too high so i have had to make several adjustments to my riding, i can no longer punch up hills or chase people i see in the ditance, instead i have to drop a gear on the hills and let people ride away from me rather than chase them down.  Having ridden at internation level for several years this was a very hard adjustment to make but i came to terms with it on the basis that i would rather modify how i rode rather than either (a) die or (b) not ride at all.

The effects of the beta blockers is that my cardio output is reduced a little so i am not as energetic as i used to be and i feel the cold something terrible, i almost always have cold hands and feet apart from 2 weeks a year when we go for a holiday in the Med.

When the defib does go off it hurts, it hurts a lot (luckilly ever time mine has gone off i have been in bed) but at least it is doing the job it is designed to do.  Once you are over the physical effects of the operation (which will probably take longer than your consultant tells you as they filled me with antibiotics from a drip before the operation which left me as flat as a pancake for a long time) you will have the mental adjustment to make, some days i do wonder if i was lucky to survive the incident or not.  Obviously this is just a phase where i am feling a bit low and sorry for myself, of course i was lucky to survive and i am enjoying a good quality of life since being resucussitated and put back together.  My advice to you would be get back on your bike as soon as you can, enjoy short gentle rides as soon as possible and be greatful for every ride you can do, there is no point in them sorting you out if you dont get back to a normal life again.

Do you know if you will be on beta blockers or something like amiodorone to regulate your herat rythem?  I found both gave me very bad nightmares (to the point where i didnt think that i would be able to continue taking them) but these do ease, i found that the nightmares reduced in duration and the time between them increased, now i have a spell of maybe 4 or 5 nights of nightmares every 5 or 6 weeks which i just put up with, i can cope with that but when i didnt know if they were going to be a permanent part of my life they were very difficult to deal with.

I hope you have a successful operation and speedy recovery and if you ever want to drop me an email (it sometimes help to unload on someone who isnt a family member) and chat with someone who has gone through a similar experience drop me a line at stephen.bulpitt [at] yahoo.com with a heading of ICD and i will be happy to help in any way i can.

Hi Welsh Boy

I too have unbelievable vivid dreams almost every night due to the beta blockers. I have had to reduce the dosage down to 2.5mgs. per day otherwise I can't function  on a higher dose. That's probably because my heart rate is still only 60bpm and that is only thanks to the pacemaker. It used to be around 40bpm 4years ago and I suffered from heart block before my VT episodes and ARVC diagnosis. Recent research now suggests that heart block may be a precursor to ARVC. Heart block is not an uncommon condition in highly trained athletes so if any of you out there have this condition just take care.

The Bird wrote:

Hi Batchy; thanks and apologies - I have only just seen your reply.

Like you, my intentions are to have the ICD fitted and see how I get on.

That said I am really missing the thrill of mountain biking and, as ZZK suggests, have had moments of "well surely i'd be better off undertaking moderate exercise rather than becoming a couch potatoe". So, I too have looked to the power assist route as a way to keep going, but the technical downhill may still be a no no as my HR is likley to be elevated through adrenaline if not the exertion, and that is the bit I really love.

All the best.

Hi Bird

I have had my ICD for 12months now and have not had any problems so far with limiting my exercise to brisk walking. I am still considering the E bike option, however my pacemaker clinician has advised me that I should never go out alone should I start any form of cycling again. I have not turned a pedal for 14 months now and I have just about got my head round this. The main problem is weight gain I have put on 20lbs  which is not good . Hope everything turns out OK for you. At least on the bright side I'm still alive !

zzk wrote:

As a senior Doctor, me and my colleagues are often asked impossible questions, where evidence is lacking or based on extremes. As a competitive athlete I certainly interpret the data with a pinch of salt. There is no doubt about the relationship of cardiac issues and endurance sports men/ women (perhaps less so). There is also no doubt once you have an electrical/ structural issue with the heart, extreme exertion can make it worse, even to the extent of resulting in premature death.

Where things start getting murky and somewhat unknown are the impact of low/ moderate intensity exercise (social riding). I personally find it hard to comprehend that this could be more harmful than sitting on your backside, drinking coffee (be careful now), eating cake and waiting for my next dysrhythmia while watching TV. There also the issue of cardiac deconditioning in trained athletes. 

As such Batchy, I am sure the advice you receive will be conservative at best and "safe". Your days of HIIT and chain gangs may be over, but if I were you, I'd keep my bike, avoid the big hills, cruise around and enjoy the lanes and fresh air when the sun is shining, without breaking a sweat. If an e-bike allows more freedom and to ride with more able friends then it may be an investment worth making. It may sound harsh and it comes down to personal choice, but neither me nor the wife will be disappointed if my last hours are spent doing what I love. 

Good luck, take it steady and ultimately doctors can guide, but only you can decide.

Hi ZZK

Thanks for your valuable and professional input. To some extent you may have a valid point regarding light exercise. For me at this moment in time I have to make do with brisk walking until I figure out a safe threshold. However other considerations have to be taken into account as beta blockers can cause some unpleasant side effects, depending on how high the dosage one is on, such as extreme fatigue in the legs and a feeling that you have the "brakes" sticking on at all times.

My last VT episode happened when I was ambling along doing only 12mph on the flat through town. Fortunately the ambulance station was only five minutes away and that I was not halfway up Kirkstone pass.

Unfortunately there just is not enough information available regarding ARVC and some cardiomyopathies  ( especially to patients ) as these  conditions have only relatively recently  been acknowledged, so research is still limited.  Most GPs do not know what ARVC is and I had to explain my condition to both GPs I have seen at my local surgery. Also the depressing psychological experiences that patients have to overcome once they have been diagnosed with these conditions can sometimes feel more debilitating than the condition.

Jeffmcguinness wrote:

Sorry - I can't help you but I do wish you all the best in looking for the right advice.  If you're ever in Northern Ireland I'll take you for a very easy cycle and a great coffee stop if that's allowed?  

 

Thanks Jeff ! Once I get my head round the situation I'll be fine. An E bike may be the solution and I have been thinking in this direction. I was rather hoping that there may be someone out there that had first hand experience so that I could compare notes. Due to the severity of this condition it is likely that that brisk walking may well be the most or least dangerous exercise that I can undertake. Coincidentally the BBC News today is highlighting this heart condition and anyone who participates in vigorous exercise should take heed !