Ep Study

[erikainorlando]

I went in yesterday for an EP study and possible ablation as my holter monitor showed atrial tachycardia along with PVC's and my basic POTS tachycardia.

I hemmed and hawed about going in for the ablation as I was concerned it would make it worse. My doctor who is very knoweledgable about POTS said he thought a couple things were going on and he might be able to fix it. I was thrilled.

So...with all the hope of a new day I went in yesterday. When I awoke they said "there was nothing to ablate". I cried and cried...I wanted there to be something to ablate and fix me! Furhtermore, how can 2 different holter monitors show SVT and find nothing in the EP Study?

How many have had an EP Study? With POTS, should it show abnormalities? The feeling like there is "nothing wrong" again is so frustrating. I am broken hearted, embarrassed, and disappointed. I wanted to be fixed...and they couldn't find it to fix it...

Even my boss was hpoing this would be the answer...my kids were hoping and I was hoping...

I just wanted to see how many of you all have gone throught his and is it normal for us to not have it showup on the EP study...bla bla bla bla bla...

Thanks!!!

Erika

[flop]

POTS itself won't show on an EP study.

Durring the study the doctor will have been trying to induce your SVT, but sometimes they hide from the doc and your heart behaves prefectly normally - frustrating!

I had an EP study done in February 2004 (before I developed POTS symptoms) because symptoms of arrhythmias but no rhythms caught on holter. My EP study was totally normal too. However since then another holter has recorded atrial tachycardia, they just didn't find it during the EP.

Flop

[Brye]

I had some runs of V-Tach during my hospital stay. They couldn't reproduce them during my EP study! I was hoping there was something they could fix as well. I knew they couldn't fix the POTS but V-Tach is a scary rhythm to miss!

Brye

[Kitsakatsa]

I know. I've been there. You are NOT a hypo. Its hard.

My heart feels for you.

Kits

[persephone]

Don't be too disappointed- if you look at the list of what makes POTS worse on th emain DINET website, ablation is one of the first things listed.

I personally was told ablatin would be DISASTROUS for me. My tachycardia is a response to postural hypotension. Take away the tachycardia, which is a compensatory mechanism, and you take away the ability to stand up is pretty much what my cardiologist said.

Lots of POTS folk have tried ablation only to find that it was a HUGE mistake, but once it's done, there's no going back.

remember the chinese phrase- Out of crisis comes opportunity.

There is a better treatment waiting for you, that will improve your POTS without such drastic measures! I can remember being so upset i couldn't just have a pacemaker, or an ablation back in the early days, but now I'm so GLAD I didn't have them, because eventually we found a med that worked wonders.

Thinking of you! And don't give up hope!

[Guest tearose]

Oh please do not feel bad! It is a blessing you heart is okay. This dysautonomia field is still being studied. You may have nerve fiber problems, enzyme problems...you are being too hard on yourself.

I mean this with love...stop expecting to find the "First Cause" and try to move on with your life and managing your symptoms and doing all you can to squeeze the best out of life. Unfortunately you may not know for many years what the first cause was. Let it go for now. You will still look for information but do not place expectations on you or the doctor. No one who really love you should expect you to have an answer when the field is still so new.

hang in there,

hugs,

tearose

[Sophia3]

Please don't feel bad and I've read MANY stories that ablations has WORSENED POTS anyway...hang in there.

Many of us NEVER find the cause like tearose said..you just have to move on from where you are at, sometimes.

[tinkerbella]

erika,

my doctor wanted to do an ablation and I would not let him and after further discussion he agreed with me that I would not be cured be given a tempory fix for my problem. Not only that but I would need ablation, after ablation, after ablation, and I still need all the same meds that I'm on now. It's a no win situation for me as it is for many of us. someone else said it that they are trying new things all the time and an ablation gone wrong may have been a blessing in disquise.

Please cheer up sweetie, I'm here if you need me. I'm not feeling well but I'm always here for a friend.

Dry those eyes and have some sweet dreams tonight. brighter days are coming. I know it sweetheart!

xxx's,

Bellamia~

[Chaos]

Haven't had an EP study yet, but can certainly relate to your being so very disappointed when YET AGAIN they weren't able to find "a cause" or do anything to help you. I've shed many tears of frustrations when the doctors haven't been able to explain my symtoms and disability. As others have mentioned, it may be a blessing in disguise, but it's awfully hard to see that right now when you had your heart set on a successful outcome. Sure thinking of you and hoping tomorrow will be a better day for you.

[erikainorlando]

Haven't had an EP study yet, but can certainly relate to your being so very disappointed when YET AGAIN they weren't able to find "a cause" or do anything to help you. I've shed many tears of frustrations when the doctors haven't been able to explain my symtoms and disability. As others have mentioned, it may be a blessing in disguise, but it's awfully hard to see that right now when you had your heart set on a successful outcome. Sure thinking of you and hoping tomorrow will be a better day for you.

That is exactly it!! Thank you so much. IYes...it is tht I was hopeful that he could at least cure the atrial tachycardia..something ...anything.. I could care less about the root case really....I just wanted someone to be able to fix me...I was almost hoping the atrial tachycardia was the problem...then they can FIX it!!!

Furthermore, it is so invalidating when they say "can't find anything to ablate"....makes me feel guilty for complaining. Even all my friends say "why can't they help you?" It is horrible when they can't fix you and then your friends and family kind of look at your cross-eyed...like it it is fixable then it was valid..otherwise there is nothing wrong..just a nutcase. ...only POTS...where we feel so ill and hardly anyone gets it. only you all for whom I am deeply grateful!

Erika

[Chaos]

I hear you! Having family and friends who are concerned for you is such a blessing and yet so frustrating when they say "You have to go to the doctor and make them find something to fix you." As though any of us wouldn't LOVE to have that option. And then when you go and just get disappointed time and time again, it makes you just want to throw up your arms in despair.

Every time I get a "normal" test result it's so frustrating. When I passed the stress test, I was crying in frustration because I passed the test but couldn't get up and walk out of the room. As the cardiologist said, "It's really good news that I can't tell you what the problem is because anything I could see on this test would be REALLY bad news." So on the one hand, I AM happy that it's nothing REALLY bad and yet so incredibly frustrating to feel like a head case yet again.

I've been doing lots of puzzling over this whole process while I've been so sick these last months. Why is it that while I know how I'm feeling and I can see objective data in myself that tells me something is wrong I still need to have a Dr. say or do something that validates my experience?? Why do I let an ego-crazed dr. tell me it's all in my head and then I actually start to question myself and start buying into it? I'm LIVING with this 24/7 and have been living with myself for all the years before when I DIDN'T have all these symptoms... or at least not in such debilitating degrees. And yet, I let other people's opinions color my own opinion of myself. It's crazy-making!!

I try to just take a deep breath and keep reminding myself of what MY truth is in this situation and try to focus on being grateful that I do have so many family members who are concerned and want the best for me, even when they don't know quite the right thing to say in the situation.

On the plus-side. Did you get to start your Beta Blockers again? Feeling any better yet?

[vemee]

I understand hoping that they could at least find something to fix. I was hoping for an adrenal tumor since that can be corrected and was disappointed when I came up negative. Don't feel like a hypochondriac, the ep test isn't designed to detect pots, your friends will have to use the energy use to look at you cross eyed to research your disease if they want to understand it. I went through 2 ep tests before I had a diagnosis and know the disappointment you feel. The funny thing is that after the first test I was told they found an extra pathway but couldn't get it to fire so they left it alone. Months later the doctor denied ever saying that and said they found nothing. That bothered me for several year until I finally went to another doctor for an ep test and of course they found nothing. I felt like a hallucinating fool.