Ep Study And Ablation. Please Share Your Stories

[cma]

Hello everyone. I haven't been here for a while. Nothing much happened since the last time though. I am doing pretty good on most days, have some down ones, but can't complain much.

Tiredness is not my main problem as for many of you. SVT is. I had 4 episodes in the last 2 years of very fast heart beat 180-190bpm and had to go to the ER, because couldn't stop it myself. I was given adenosine. Not a fun drug at all. I was referred to cardiologist in hope that he will know why I am having those episodes of SVT. So I saw him a week ago and all he suggested was EP study. He told me he wasn't very knowledgeable about POTS and that ablation would do nothing for my POTS, but would solve SVT problem.

I have to tell I am scared to have an EP study. The thought that they'll will try to provoke fast heart beat scares the crap out of me, but it seems that I don't have any other choice. I would like to start a family soon and what if I will get that dreaded SVT during pregnancy, I am not even sure if adenosine is administered to pregnant woman.

I would like you to share your stories. Is EP study painful? Many of you say that, if you knew you had POTS you wouldn't have done an ablation, but if I understand correctly ablations are done just for abnormal rhythm where beta blockers don't help.

I am diagnosed I have POTS, am taking beta blockers, florinef and licorice root.

I would really appreciate any info you could give.

[cardiactec]

I have had a diagnosis of POTS for 10 years now with sinus tachy rates up in the 190 range and about 6 years ago I started getting a DIFFERENT feeling from just my regular POTSY feeling.... I mentioned it to my EP and finally on an event monitor they caught an SVT (ectopic atrial tachycardia) at 260 BPM.

My EP here in Maine corresponded with Mayo Clinic and Boston before proceeding with my EP study/ablation just to make sure it was "okay" given my POTS diagnosis from years earlier.... Both Mayo and Boston told my EP that is was fine to proceed with an SVT ablation but to stay away from any sort of sinus node modification whatsoever because it has been proven that ANY sinus node modification/ablation in a patient with known POTS is detrimental and NOT helpful in any way for POTS symptoms relief.

My EP study and ablation was done on New Years Eve 2007 and though it most definitely has helped with the symptoms I was getting from the SVT, I am still left with the lovely sinus POTSY rates of 170-200..... yuck.

I would proceed with the EP study if medications have not helped to silence it or if it is happening on a frequent basis and is life altering.

Good luck to you.

Let us know how things go..

Angela.

P.S. In my experience with the EP study, they sedated me enough so that I still was semi-aware of what was going on ..... I will admit, I did feel pain when they started ablating and it wasn't pleasant - however, you are pretty loopy from versed and some other "conscious sedation" meds that they give, that it makes it a little more tolerable. It only hurt while they were doing it. After the study, no chest pain at all ...it had subsided.

P.P.S -- I knew i had POTS going into the EP study and ablation and I am still glad I had my EP ..... I know there are some on here that say if they had known they had pots, they wouldn't have had an EP, but I guess everyone is different. I was pretty symptomatic with my SVT, most likely because my rates were 260..... driving and having one of these spells was getting pretty dangerous, so I really wanted it taken care of ..... and I'm glad I did ...

[lieze]

Yes I'm glad I had it done.

The worst part for me was just the anxiety.

It was not that painful for me but I've had four babies so maybe I'm comparing it to that.

It has taken me a while to recover how much related to the ablation and how much POTS I don't know.

Some get instant relief but maybe those people don't have POTS. Like one guy told me he was back to work the next week! Ha! I'm coming up on my 1 year anniversary in July and my heart is just now starting to really calm down. I am glad I had it done. I would not have wanted to live with SVT's for life. No fun at all. I know what you are going through and I never knew when mine were going to come on.

I had no SVT's whatsoever after I had the ablation and my resting pulses came down also. They told me that might happen. So prior to ablation my resting heart rate was at 99 now it is more like 70-80's depending on how relaxed I am.

Before when I got up to do anything at all my heart rate was at least 112 or higher.

Now I can stay around 99 and slightly above 100 depending on what I am doing.

My heart just feels so much less reactive to everything before ablation I was all over the place.

Speeding up slowing down stopping all together it was nuts and I could feel it all.

Like I said took a while to really calm down but so worth it.

They started giving me all those meds IV and nothing was doing it they finally were able to get me going with adrenaline. Makes sense to me since some think I probably have the type of POTS where adrenal glands are involved. Even with my high norepinephrine levels post ablation they would get me tachy but that was it.

They told me it takes 3 months for the heart to heal to develop scar tissue over the pathway they have ablated. I had some pain after but I was so determined I wanted my ablation to be a success I would not take anything for the pain because I wanted some nice inflammation there so I could get a pretty scar and have no more of those nasty SVT's. The pain of the ablation was so much minimal to me compared to the horrible feeling of the SVT's.

Just give yourself plenty of time to rest after. I tried to do too much and ended up with some icky POTS episodes I would recover in short time and then be up and all over the place again, just think if I had to do it over again I would have babied myself just a little more knowing that I do feel this much better now. After all it's a procedure on the heart. A little activity is probably good just don't try to rush around and go places that first week like I did. Bad idea for me.

[sj75]

i had a ep study and ablation in feb 06. Mine was slightly more complicated though as i had and still do have very regular episodes of svt, ectopics, atrial fibrillation and atrial flutter (think ive remembered them all). We knew before i had mine that it wasnt going to be curative as the inside of my heart was too electrically active but the specialists needed to get a better idea of what was going on and they did manage to rid me of some flutter. The procedure lasted 5 hours but due to the sedation i only remember little bits of it. There were moments when it was uncomfortable (insertion of the lines and during the burning of the tissue) but it wasnt half as bad as i anticipated, in fact it was probably harder for my husband who was waiting back on the ward.

Unfortunately for me, i suffered with pericarditis on and off for 18 months afterwards and my pots started after my ablation, but i have to stress that that is extremely rare and my consultant has still to this day (despite doing 3 whole days of ep/ ablations per week) only ever seen one other case like mine. I believe for svt it is a simple ablation and has a higher success rate.

i dont believe they can give adenosine during pregnancy and dont like any anti arrhythmics to be used, ablations are often used as an alternative to medications even if the meds work. I would defintely try and get this sorted before pregnancy if the option is available to you as the hormones in pregnancy can make svts worse. good luck.x

[cma]

Thank you so much for sharing your stories !!!

It's still so scary, but it's comforting at the same time to know that you don't regret doing it.

SVT's are not fun at all, but I am still wondering maybe there is a correlation with POTS, because I never had them before getting sick. So there is still this voice in my head, that maybe doctors are missing something, and EP study with possible ablation might make it worse. So I am still confused, but don't really know where else to go, who else to see.

lieze it's so interesting that ablation reduced your resting heart rate. Cardiologist that I saw told me, that this ablation wouldn't affect my resting heart rate, unless they damaged main circle of the heart, then I might get bradycardia .

angela , I have no idea if they will be looking for sinus node or not. But thank you for this information, because now I know that I have to figure this out

So, thanks again for your posts it was so important for me to hear that from ppl who had it done and don't regret it.

[persephone]

I've had an EP study. It doesn't hurt. It makes your head pound when you have super fast rates, but that's all. I didn't have any sedation, just a sht of local anaesthetic in my groin when they put the wires up.

Most of mine was sinus tachy so we didn't ablate, and thus I can't comment on ablation.

I found my EP study absolutely fascinating- I gave a running commentary on what I was feeling while my team gave a running commentary on what they were doing :-)

[cma]

Thanks persephone for your post.

I am feeling calmer and calmer with every positive post . And I understand that even though we have the same condition, our bodies are different and react differently to medical intervention. I hope everything will go Ok, if I'll decide to do it. Although I am not sure I have other choice at the moment

[Stace915]

Hi there, I just sent you a private message about this

[Serbo]

Hi, bumping this up.

I had an ablation in feb for AF/AVRT.

For 2 days now been having lots of ectopics, some runs of 3 or so and doubles. Hard to say how many, but at least a few an hour.

I fear this is the ablated pathway growing back. The ablation was the pots trigger for me. Has anyone had pots from the ablation then gone on to have another ablation?

[lieze]

How long ago did you have your ablation?

It takes the heart 3 months to heal post ablation and you get a lot of really funky beats for several months after the ablation.

I think it took me a good year until my heart calmed down.

For others it's instant but I had all kinds of funky things going on.

So I see about 10 months ago...it took me much longer to stabilize in fact I think at the point you are at I requested to wear a king of hearts monitor cause I was so freaked out.

[Serbo]

Thanks lieze

Yeah about 10 months, was funny up to about 3 months, ok mainly and now this. Think it's to do with reflux or something, but never had this many ectopics before

[lieze]

My heart and stomach follow the same pattern.

After meals or with reflux I get all types of weird heart beats. After the stomach calms down so does my heart.