RVOT-VT, your experience?

[wyo19]

Hi there. I was recently diagnosed with CPVT, A genetic disease of polymorphic VT so it was not considered ablatable. I got a second opinion and the new EP says I do not have CPVT but rather RVOT-VT. Mine is triggered by extreme exercise. Like someone mentioned in another thread, I am very fit/active and this is frustrating to have a condition that is brought on by having an active lifestyle! I hike for work so it is inconvenient as well as upsetting It is a much better diagnosis than before..however, I am currently on Flecainide (100MG/Day) and the new EP is taking me off of that and putting me on Verapamil (120MG/Day) haven't started it yet, hoping it agrees with me. I don't like flec and I don't like any pills, to be honest! Tried Beta Blockers a few months back but didn't tolerate them as my resting HR is already very low. Doc says it could be ablatable but suggests I go on this med +magnesium to see if we can set my heart straight before trying ablation. He said sometimes it can get better and I can come off meds? He said that RVOT is broken into thirds. 1/3 of the people get better, 1/3 get worse, and 1/3 stay the same. Anyways, any information about how you are all doing and dealing is helpful.

[Leigh33]

Hi, I was diagnosed with RVOT-VT/ectopy in October, put on beta blocker bisoprolol however it didn’t help much, so I was booked in for an ablation, had this end of January, I’m now 6 months on and had a few months being episode free however I seem to be getting them again recently they have settled on their own tho so as long as no trips to A&E I will see cardiologist in September, I’m still on beta blockers and hopefully will eventually come off them but now I’m not so sure as last week had 4 episodes so they are becoming more frequent.

I hope the new medication works well for you. I imagine it’s a struggle to know your trigger and not be able to keep as active as you would like, I can’t seem to find the trigger for me, no alcohol, decaf tea, healthy foods, and still could be kept awake all night with a heart that feels like it’s running a marathon.

Hope you feel better soon.

[wyo19 in reply to Leigh33]

Hi there Leigh! I just wanted to reach out and see how your September appointment went. Wondering if you are still on medication or have scheduled another ablation. I am having an ablation this week and hopeful that it does the trick. I will keep you posted on how things go. I am currently on flecainide. Beta blockers don't work for me as my resting HR is so low already. ,Hope you are doing well..

[Leigh33 in reply to wyo19]

Hi, good luck with your ablation next week! Let us know how you get on. My appointment went ok, cardiologist suggested we either change medication or go for another ablation, so change of medication this time, I’m now on verapamil 40mg 3 times a day and it seems to have vastly improved thing for me, I now only maybe once a week have an episode of racing heart which while is a horrible experience it’s a lot better than this time last year when it was constant even woke me up at night. So my dr is very happy that the ablation has improved despite still being on medication, who knows when I see him again in January my dose might be lowered fingers crossed. All the best for next week, just remember recovery from this will take time so don’t rush it. Leigh.

[wyo19 in reply to Leigh33]

wow, interesting to hear that verapamil is working for you. When I switched to verapomil, 5 days in to the new medicine I went into vtach from just a short walk.. so I went back on flecainide. I hope they do let you lower your dose in January. I am really learning that I need to take more time than my EP will likely recommend for recovery. I think I will do okay the first week, but after that, I know I will have to talk myself in to taking it easy... I am a busy body! I will keep you posted and thank you for the well wishes!

[Leigh33 in reply to wyo19]

Hi, how did your ablation go? I’m 1 year post ablation now, and since starting the verapamil it has started to come back again, fast heart rate and lots of extra beats last few weeks it’s almost constant again, my dr has told me I can start to take an extra tablet when I need to and if I tolerate that well I can up my dose to see if that helps. Before we go down the route of another ablation x

[wyo19 in reply to Leigh33]

Hi Leigh! How frustrating to have it coming back full strength again And increase in meds is never what we want to hear. so sorry about that. The ablation went good, it was an interesting experience being "awake" for it. I remember most of it, but they had me very comfortable. It took me longer than expected to take it easy and recover from the ablation. Immediately after the ablation, I felt no odd beats or PVC's. after less than a week, they started to come back. On the phone my nurse said that isn't normal for this type of ablation, but when I saw the EP in office, he said it could take up to 6 months for the odd beats to settle down. I like his opinion better! I took a 'stress test' on the treadmill after 6 weeks post ablation. I did this because my RVOT VT is triggered by a high HR. I had been going into VT before I reached 160 BPM. but this time I got up to 181 and no VT. Doc was happy, I was happy... Hoping it stays away. He has me off all meds since a few days before ablation. I have been able to be somewhat active without any provocation of VT. I am constantly "looking over my shoulder" so to speak. Waiting for the worst, but hoping for the best. It has now been 9 weeks since my ablation and we are traveling and camping in Baja Mexico. I am feeling good, with less and less odd beats.. fingers crossed it stays this way! Would you consider another ablation? I think if mine picks up again I would consider it, I hate the medication, though the surgery was also daunting. I am curious your age, is the 33 in your name, your age? I am 34 female myself. Hope you are finding a way to feel the best you can, so sorry you've not had success with the pills or the ablation.

[Leigh33 in reply to wyo19]

Hi, I’m 36 female, I was back in hospital last week overnight, my heart rhythm was all over the place I was having two extra beats between every normal heart beat, I was on a continual heart monitor and it was 30-50% of all my heart beats, I was having like a chest ache where my heart was, luckily the cardiac bloods showed no damage so it wasn’t a heart attack or anything like that. I was just very symptomatic lightheaded and short of breath. Now I’ve had my medication upped and waiting to see my cardiologist. I’m still having lots and lots of ectopics so guessing I might need another ablation. That’s great news your recovering so well! Enjoy ur travels!

[wyo19 in reply to Leigh33]

Geez, I am so sorry to hear about your overnight in the hospital! That is no good That sounds miserable. I am interested to know if your doctor recommends another ablation. Though we have similar diagnosis, ours seems very different. at any rate, we are both different from the majority it seems. I have still been having odd beats, PVCs. They come and go. I have gone a week without noticing them, then they come back and last for several days. I was able to get a good sweat up yesterday and didn't go into Vtach though, so I am happy about that. Take care, and keep me updated on what the doc says about your recent situation. Sorry that you are still sorting through things. I feel like these are all temp fixes.. hope my procedure lasts a bit before I start having more issues..