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rvotvtlady

Hello, don't know if there is anyone like me on here. I'm not sure if this forum is just for AF. I was diagnosed with RVOT VT Right Ventricular Outflow Tract Ventricular Tachycardia last year. Previous to this, I was a very fit lady running regularly and competing in races (I'm 47 by the way). I had an ablation in Jan this year. I started jogging again after getting the all clear but the symptoms came back. I had another ablation early August but have had a few flutters since and had some symptoms today whilst just walking. My symptoms previously only occurred when I had a high heart rate and was exercising vigorously so I'm a bit alarmed. I have a follow up treadmill next Monday but I am now thinking I will probably go into VT on the treadmill as I did last time. I am just wondering if anyone else is out there like me. I'm not on any medication, did not really want to take it but now thinking I may have to. I have stopped running completely and only cycle now. As a bit of a fitness addict this has been hard to come to terms with. RVOT VT is usually associated with cardiomyopathy but I have a normal heart as do apparently ten per cent of people who are diagnosed like me. I am probably quite lucky as opposed to SVT as symptoms only last for seconds but tend to come and go quickly. It's like having a sudden shock. Anyway, wondered if there was anyone like me out there? I am not having another ablation. Don't want to go through it again!

18 Replies

Hi Rvotvlafy,

Sorry you are going through these challenges. Just to let you know-some people on here have had 3 ablations (some much older than you too) and now they say they are now doing much better!!! Since something is happening-I would make sure I took an aspirin until proper meds are given. May give a small protection from clots forming from irregular heart events for you until you see an Electro-physicist.

Wishing you well and hope you get some good answers on here soon. 🙂

rvotvtlady profile image
rvotvtlady in reply to Aprilbday

Thanks for your reply. I don't want another ablation as I feel it is taking too many risks. There was a loud steam pop when I had my 2nd ablation which made me almost sit up and gasp during the procedure as I was not heavily sedated. They had to scan my heart immediately to check they had not made a hole! scary! That's why don't want to go through it again. I have my treadmill on Monday 10th but I don't feel too confident I will be arrthymia free. You never know though!

Hi you are the first person I know who has the same condition as me I had 2 ablations last year but did not work for me, .now on Flecainide and Nebivolol with good results but have taken a down turn this week and the ectopics have come back bad, I would have another ablation if I thought it would work I just have no quality of life and cant sleep hope you start to feel better soon, best wishes Ingrid

rvotvtlady profile image
rvotvtlady in reply to greg35

Thanks Ingrid, I don't think there are many of us around. I have kind of got used to the weird feelings and it does not stop me sleeping or anything but sometimes wakes me up in the night. Alcohol definately makes it worse but I hardly drink. I'm not sure this second ablation has worked as I have been getting symptoms. I don't want another. They told me I have lots of ectopics coming from different areas and I think they will probably just keep re- routing and developing the rogue rhythm again. It sounds a bit pessimistic and I am normally very positive but I think if this one not worked, how can they be sure a third one will? Thanks, Jill

Have you read 'Haywire Heart' by Dr John Mandrola? He is a cyclist and cardiologist, and looks at the issues of exercise and AF.

Aprilbday profile image
Aprilbday in reply to Polski

Thanks for that book title Polski. This is not my post but I sure do appreciate your giving me the book recommendation.

rvotvtlady profile image
rvotvtlady in reply to Polski

Thanks, I may have a look at that. I don't have AF but my arrythmia I think has been caused by excessive exercise. I started to train more in my mid 40s and I think this is the result. You never think it will happen to you but it can! Thanks again, Jill

Hi, I just searched RVOT on here and your post come up, I’ve just had my first ablation two days ago, I had a high burden of ectopic beats from the RVOT and short runs of VT, medication didn’t reduce the burden much so I got an ablation within a short space of time, the post ablation ECG was great, no ectopics and the rate was good, was told I won’t need the beta blockers anymore, I had to stay in overnight, but the next day they did another ECG and the ectopics where all back again, as soon as I was up my symptoms returned breathless, dizzy and racing heart, so they put me back in beta blockers, I just don’t know what it means tho, they did say it might settle down we just have to see. Feeling a little deflated by it all now, how are you now? What are the next steps if the ablation has failed?

Hi leigh, it's only a couple of days since your ablation so I wouldn't worry too much that it hasn't worked. Like all others on here, I think it can take time to settle down. I have had two ablation, after the first one I had no funny symptoms afterwards and started jogging again two months after very gently and within four weeks of this the arrhythmia was back. I wasn't sure about a second ablation but the ep said he would worry about me if I didn't have one as I was not on any meds and due to risk of black outs but I have never felt I was going to pass out ever, only felt dizzy a couple of times. I had the second ablation and I felt it was a more aggressive procedure in that I had a lot less sedation and was quite aware of things at the end. I think if they sedate you too much they can suppress the arrthymia. After the ablation they give you a high dose of isoprenolol and I had no vt but they did say there were still rvot ectopics. My treadmill test after, no vt but I have had some symptoms since the ablation, esp in the first six weeks where I felt dizzy, had a racing heart etc. I had an 24hr tape and there were still rvot ectopics but no vt. My vt is kicked off with exercise so now I am much more careful with what I do. I am seeing my ep again in Feb so I can ask. Him questions about the tape results but I have had no symptoms last couple of months apart from ectopics which I mostly notice at night. I never had medication as I have a low rate heart, in the 40s so ep said not appropriate for me. Hope this helps and that you recover quickly. I was pretty much back to normal within a week. Jill xx

Hi, I did overhear them saying it was in a very difficult spot to reach and they wanted to see how I got on without beta blockers as the ECG looked normal but time would tell, but straight away the next day I was back to the same symptoms wise and the ECG all over the place, really hoping it does settle, I was quite awake for it all and not something I would want to repeat. I’m feeling better than yesterday which is good, but the whole time I can feel my heart thumping away (sleeping is so hard with it!) nice to hear from someone with similar condition, hope your doing well and good luck with your next appointment xx

rvotvtlady profile image
rvotvtlady in reply to Leigh33

Thanks, you may need a second one but then you might be lucky. Fingers crossed for you. Maybe the rvot is difficult to get to as I still have rvot ectopics but they don't bother me. Its when they group together to form vt that it becomes a problem! That's why I'm taking it easy with exercise now! Xx

Hi, I was wondering how you was getting on? I’m 3 months post ablation now, still on the medication and will be for another 6 months at least, I did collapse 6 weeks post ablation due to a combination of heat and walking up lots of stairs, and had a couple of smaller episodes (mainly if I have forgot to take my tablet) just had another 24hr monitor so waiting on those results, but other than that I’m feeling pretty good, have a lot more good days with energy but maybe overdo it and have to rest if I do, want to start exercising and hopefully start horse riding again (did it as a kid) going through all this has made me want to do more in life and enjoy the good days as much as I can. I hope you are well?

Hi leigh, I'm doing really well thank you. I had a review with an ep in Feb. I was disappointed I didn't get the ep that had done my procedure but saw someone else. I had a tape in November and nothing sinister on there. Just small number of ectopics. 5% I think they said and no arrhythmia. I had lots of symptoms after my ablation for at least 2 to 3 months after. I been doing quite a bit of exercise but not the intensity of what I used to do. I'm not partaking in running races anymore. I wear a garmin and I like to keep my heart rate below 140bpm.so I jog slower and walk the hills. I not had any symptoms whilst exercising so feel great. My rvot was triggered by intensive exercise so I can never go back to what I did before. I'm too scared it wil come back and don't particularly want another one. It's quite shocking to think I had two ablations last year one in Jan and one in August. I hope you continue to feel well. My ectopics I notice are triggered by alcohol but I don't drink much so not a problem. Best of luck to you going forward. Xx

Good to hear your doing well! Take care xx

Hi there, glad to find this thread- but not glad you are all going through this. 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. Mine is also triggered by extreme exercise. Like someone mentioned above- 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.

rvotvtlady profile image
rvotvtlady in reply to wyo19

Hiya, I have had two ablation. The first one was unsuccessful as symptoms came back. The second one I had in August 2018. I have been given the all clear now. I have no symptoms now when exercising but I'm not exercising like I did before. I think if I did it would likely come back. I still have some ectopics, they don't bother me. I was never put on meds as my heart rate has always been low and ep did not think it would suit me. Even though Im doing less strenuous exercise than before my heart rate is in low 40s when relaxing. When I did lots of exercise previously it would often drop below 40! I had to have all the tests to rule out a genetic condition as vt is often connected to it but luckily mine wasn't that. So my reply to you is that I am OK now but I take it steady now. I only ever got symptoms previously when exercising. Never any other time but my exoerience was that it started happening towards the end of a long run and within six months it would be when I was just jogging or even walking up a hill so it became more frequent. Its really annoying when you have an addictive personality and I was definately addicted to exercise. However now I exercise to keep in shape rather than competing. I have to feel lucky that I'm now symptom free and had 13 years of running in races. I have no doubt that the exercise contributed to my problem. I do think some people are more susceptible than others a D u fortunately I was one of them. The book, the haywire heart is a very interesting read and examines the link between arrhythmia and exercise... Food for thought! Good luck, if you do go forward to ablation and have any questions please get in touch. I really did not find it that bad bug I do think it's an individual thing. Jill

wyo19 profile image
wyo19 in reply to rvotvtlady

Hi Jill,

Thank you for your response. Glad to hear that you think your second ablation seemed to help. I am afraid of ablation not working for me, but I also don't like being on meds. I am not a runner but am an avid hiker and it is very upsetting that this diagnosis is basically going to prevent me from getting after it like I usually do. I live in a very mountainous area and there aren't many hikes around me that aren't extremely steep and strenuous. I also hike for work, which is another problem.. My heart rate is also very low! But as I have been less active the last 8 months I have put on weight. I don't necessarily think it is from the meds but rather my inactivity. Thank you for the book suggestion, I will certainly have to check that out. I will keep in touch as I proceed with treatment and definitely let you know if I end up going the ablation route. Thanks again for your response. These diagnosis are hard, but it is nice to know there are other people who have made adjustments and are working on finding a balance also.

Hi, just thought I would check in on this post again, I had my ablation in January this year, had to stay on Bisoprolol afterwards, but had a few months once healing calmed down of feeling great, having energy and not having any episodes, when I saw cardiologist he was very pleased with me and was looking to take me off Bisoprolol in September.......however the past 6-8 weeks I’ve started to have episodes again, not as bad as before but still one made me go A&E and yup ECG was abnormal again, cardiologist sent me a letter telling me to up my dose of Bisoprolol (guess I won’t be coming off it anytime soon then) and arranged for another 24hr ecg before my appointment with him in a few weeks. Knew it might come back or the ablation might not have been a total success but still disappointing, it’s not as bad as before tho and only episodes now rather than constantly before ablation, and since upping my medication it seems to have helped (tho not even been a week yet)

Hope your all doing good?

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