EP study/ablation

[danelle]

Long story short-have had arrythmias(PAC's, PVC's, Runs of both, SVT, IST, couplets, triplets, multifocals, etc) and sinus tachy for 19+yrs. I have been misdiagonsed until a year+ ago. My dx is POTS with the documented above things. Dr Wharton in Charleston and I think Dr Grubb too told me that there is a possibility that Ihave more than just he POTS going on cardiovascularly.

If so, they seem to think it is probably near the SA node rather than the AV node. At any rate, I am on atenolol(have been for 18 yrs), not working as well as it used to but they kindof left an EP study up in the air.

What I want to know is, IF there is a possibility to have POTS AND another electrical problem at the same time? I DO NOT WANT to go through an EP study or ablation unless these things are life threatening and will make me better.

I had a cardiac cath done about 1 1/2 yrs ago and I freaked out during the cath and made them stop. Needless to say, I am beyond TERRIFIED.

I have read all the posts that I could find the word ablation in and none sound reassuring. I do have a severe case of POTS and am filing for my disability at this time.

What do you all recommend? What do you think? Your opinions and experineces mean so much to me. I just wnat to get rid of these crazy rythms and tachys. I am SOOO sick of them. THey scare the daylights out of me, even after 19 yrs.

Thanks,

Danelle

[MightyMouse]

Danelle, that sure is a lot to mull over, and frankly, I'd be scared to death too! I hope you make your most informed decision--and maybe get an EP second opinion?

Nina

[morgan617]

Danelle, I am so sorry you have to make a decision like this. I would definitely get a second opinion from an ans specialist. I know I have told my story here, but ablation was just so wrong for me. Mine was near the sinus node too. The sinus node affects the rate, but I really don't think it affects the pvc's. It's kind of like having laser on your eyes that correct myopia, but do nothing for astigmatism. I can only go from my personal experience and what I've read on the board, so I am biased, as I worked a 14 day the day before the ablation and have never and will probably never work again. So I may be totally the wrong person to respond. However, there is literature put out by Dr. Goldstein from NIH. If you call NDRF, they will send it to you. He is very opposed to ablation when POTS is involved. We got the literature after the ablation.

I have MORE arrythmias since the ablation. They don't wig me out like they do others, but they are annoying, for sure. Sometimes, when it's sustained, I wonder if this is it, but am not afraid of it. It hasn't done it yet, and I am pessimistic enough to think I'm going to live to 110, just so I can be miserable.

I would read the stuff from Goldstein, and certainly get another opinion. If I had to do it over again, I would never do it, but as I said, My experience was life altering in a very bad way. I don't see a lot of people on here who have had the ablation part of this, mostly just the eps part.

Sorry, I can't be more helpful. I can't tell you what to do, I can only tell you what I did and how it's impacted me. For anyone who's had a positive experience, PLEASE throw in your ten cents!!!! morgan

[persephone]

Hi there. I was thinking of trying for an ablation too, but my cardiologist told me that allthe evidence points to it being terrible for POTS patients- doing more harm than good. I even posted here about it, and had lots of replies from people telling me thatit was the worst hting I could do...

[danelle]

Morgan,

Did you have the symptoms I listed before your ablation? If not, what kind of arrythmias did you have-please be as specific as you can. Thanks for your help. This may sound ignorant because I am a nurse but what kind of a dr is a ans dr. I know itmeans autonomic nervous system but what kindof md would tthat be? I'm so sorry you had such a horrible experience.

I have joined the pessimist group too You are silly!

Nina,

Hello stranger!! Would you be more concerned with the arrythmias or the ablation? I know you have told us before which one you experience becasue of the POTS(I just want to know if these are "normaL" for POTS, would you refresh my POTSY mind please

[MightyMouse]

I have SVT with t-wave abnormalities associated w/ LVH(left ventricular hypertrophy, and inverted sinus rhythms. I also have notations about high "peaks".

Every ECG has a automated printouts that says "Cannot R/O LVH or ischemia.

Nina

[danelle]

MM,

Your EKG sounds similar to mine. Do you have the other arrythmias that I noted as well?

Persephone,

Don't know how I missed your post earlier What kind of arrythmias do you have documented?

[Guest Mary from OH]

Danelle,

I know you and I have spoken about the EP study and how you reacted to the cardiac cath. I'm not sure it's worth the stress for you unless there is some other reason for it other than to decide about an ablation. Because the studies about POTS and ablations do seem so clear to say that almost ALL cases, even when people have BOTH POTS and IST that the outcome is not postive. It doesn't seem worth the risk to have the ablation done. And if the only reason to have the EP study done is to see if you need an ablation..... then I say, forget about it. You don't need the extra worry.

Personally, I think (from talking with you extensively) that you need your meds adjusted. The beta blockers seem not to be working for you. I hesitate to say, they may even be causing you more symtoms. They can do that for some POTS patients. I am one, for example, who cannot take beta blockers. I think from as lousy as you've felt for a long time that you may need a "major" med overhaul. IMHO (in my humble opinion) SOmetimes meds lose their effectiveness for people and sometimes people's symptoms warrant a change. If it works, great. If not, you can always go back to what you know "worked". I know that your Klonopin works well for you. WHy not start from there and have the dr. add things....? Just a thought.

Take care. And *try* not to worry!!! (yes, I know that's the pot calling the kettle black!!)

Love you!

[MightyMouse]

Danelle, I have no idea if I have other arrythmias as I've never had anything other than a stress test w/ echo and an ECG. I had a r-heart cath at NIH, but I had all sorts of arrythmias during the catheter insertion and my rhythm stayed inverted for most of the testing. I was also having arterial spasm, and venous spasm.

I think the only way I'd learn the answer to your question would be to have something like a holter, or event monitor. Since I'm not going to consider having an ablation, I never bothered to request those tests. I suppose if things change w/ my rhythm on any future ECG, I might consider asking for further testing.

BTW, my neuro wants me to see one of his cardio friends; so far I've not agreed as I really do not want to redo all my testing. I found out that my primary hospital has a tilt when I went for my EEG; I walked right past the sign that said "tilt room".

Nina

[morgan617]

Danelle, I can't see tonight for some odd reason, so bear with me. Before I had the ablation I had a holter and event monitors and treadmills, man you name it. I had tachy an average of over 8 hours a day, with one hour being normal. I had short bursts of svt or pat, whichever they call it for you, and PVC's.

I had absolutely no activity tolerance at all. I couldn't go over 3 minutes on the treadmill with my heart going to 200 or so. They even did a test to see if I was hyperventilating and that was causing the tachy, but the doctor in attendeance called my primary while I was there and said, there's something very wrong here. I never did hyperventilate and pulmonary function tests were okay.

My eps doctor ( by ans doctor I mean someone who specializes in OI or POTS) said I had IST versus atrial tach. He never called an eps doctor who deals with dysautonomia. Everyone except me thought I would feel better if they could just get my rate down. WRONG WRONG WRONG (BTW I think it's David Robertson, not Goldstein, jeez you read so much you get confused)

AFTER the ablation I felt like total crap. They put a holter on me and I had 17 hours of tach (twice as much as before the ablation) runs of ventricular tachycardia, millions of pac's and continued runs of svt.

My heart finally slowed down after awhile, but then it would never go up, even normally, like when you stand. Now I am getting tachycardia pretty easily again, like just taking a shower. I have runs of slow vtach, and lots and lots of svt, and it's longer than before the ablation. The arrythmias actually got worse and have never let up, the tachy got better for awhile but is now coming back, and I have no tolerance for anything now. Walking through the store is more than I can handle.

So, for as far as helping, no fricken way, it made EVERYTHING worse. I'm sorry this a downer post, but it's the reality of my experience. I haven't heard of anyone doing well. That's why I say, be very sure you have someone who deals with ans involved in this decision. Good luck, morgan

[steph37822]

oops

[Sophia3]

WOW! I had some idiot doc put me in the hospital a few years ago for tachycardia and some abnormal T wave stuff. But it was just my pots that was dx a few years later.

The BIG problem I have read on ablations was that if they zap the wrong place, you can have bradycardia instead of tachycardia and really feel like ****.

I have lots of pre-fainting warnings but if I went by what a cardiologist once told me, i could turn into a chronic fainter after an ablation.

So I wouldn't go there but that is just me and I have read all information on this illness for years. Good luck in doing your homework and making an INFORMED decision.

[corina]

Hi Danelle,

I can't help you with this but I wanted to let you know that I'm thinking about you and that I wish you a lot of wisdom on your decision!

Good luck and take care,

Corina

[danelle]

MM,

Thanks for the advice, what you say makes sense. I DON"T want to do it but at the same time when these whacky rythms get into their groove I get light headed and THEN I start freaking out, it is just a psych problem that I will have to deal with. I have major panic attacks at those times and that makes it worse(you know the vicious circle). I just don't want them to kill me, BUT I don't really want to get that topic started again It is truly something I will have to work through.

Morgan,

Did you have a very reputable Dr do your ablation? The symptoms that you list are similar to mine now, without an ablation, and with a beta blocker. I guess I had better leave well enough(whatever that means) alone. I really appreciated all your input. What are they doing for you now-medication wise or in anyway?

Steph,

AWWWH, you are SO sweet!! I appreciate the compliment. I have aged dramatically over the past couple of years though and it really shows. And by the way, you are very BEAUTIFUL as well.

It sounds like in your case, you were lucky the ablation didn't work. As for how the arrythmias affect me, for the past 19 yrs, I haven't been able to do what I did prior to having them. My life has totally changed. To be honest, I can't remember what it was like without POTS and arrythmias. I really can't. I do dream about it. It would be like hitting the lottery. As for the past 2 yrs-living h$!!.

As for stopping my BB, I have tried that several times (gradually of course), each time I would have major tachy and high BP within 24-48 hours and end up in the ER or for a wonderful stay in the hospital. That isn't an option for me, however, I think it may be part of the reason I can't breath good at all(the BB). I get so short of breath just trying to walk throught he house(when I am able) and sometimes I wake up SOB, it just goes with the territory I guess

As for doing an EP study, I am to a point to where I would If I really needed to. But let me tell ya, I am one who is VERY sensitive tomeds and it usually takes very little to work on me IF I can even tolerate it. But when I had a heart cath done last yr or the yr before they gave me 50mg Benadryl IV, 10 mg Valium before I even went to the cath lab, then they gave me 3 doses of phentynyl(spelling?) and several doses of versed because I kept asking for more. I remember the WHOLE procedure, who was there, what was said, EVERYTHING. The worst part is when the dr got to my heart and said "now your going to feel some funny beats as we go into the heart" no more than he said that, he started into the heart and I had PVC after PVC(run of V-tach). I screamed for them to stop and they stopped the procedure right then. After it was all over, I slept for 16 hours straight. I do remember hearing the nurses saying "Her pressure keeps dropping, it's 80/40" I opened my eyes and said"that is ok, I am just tired, I am alright" I think they thought I would crash on them. Once again, they had no clue about POTS

I only saw Dr Grubb once last April, we basically talked for about 1 hour and he did a very quick echo, but no testing other than that(oh yeah-an EKG). I don't know if he would be able to tell me what to do or not.

Thanks for the kind words Corina

Mary, yeah we have had a lot of convo's about this stuff. Maybe I just need to do some different meds but I think we have tried EVERYTHING out there No kidding. I look to talk to you more about this soon. Hope Marissa is doing well, as well as you and your migraines. Love ya

Maybe I will just wait until Derrick's symptoms and meds get under control. I just can't bear the thought of leaving behind my boys-Derrick with POTS-which I can only understand completely and PJ with some other issues-that no one else would understand. Noone treats or cares for their children like moms. They need me too much-more so now then when they were little.

Thanks to all and keep the replies coming.

I love you guys,

You are the best,

Danelle

[morgan617]

Danelle, my doctor was considered the best. He is really the only one with the mapping skills involved in the type of ablation he did. The report did say I still had variable rates post ablation, which means I must several pathways also. So he really only took care of a small part, which would explain why I'm getting tachy again.

As far as meds, I don't take anything for it. I take valium for my inner ear disorder (vertigo is the only thing that makes me anxious feeling because it makes you so sick and disoriented) and hormones for osteoporosis. I suppose I am menopausal at this point, but was started on them years ago before I was, and since I've had a hyst without removal of ovaries, I don't have periods to go by. There is a nurse practitioner here in town who does the testing and orders those bio identical hormones and I want to try that, although they mess a little with your adrenals and I'm not sure I like that. The valium also helps my OI a little. Dr. Robertson recommends 5-10 mgs 4 times a day, YIKES, I take 2mg 3 times a day, so I sort of benefit in two ways.

I am going to try and switch over to meclizine for my meneires. I used to only use that, but it is so much more sedating than the valium. It will be interesting to see if it makes a difference in my OI troubles. I've cut out a 2mg pill I take at bedtime and in a few days will cut out another one. We'll see how it goes.

They tried everything on me, but the dose I needed to take to slow down my heart rate made me feel so awful, we just stopped. I'm not going to take something that makes me feel even worse than I already do.

I do get anxious, but I just don't seem to have the panic that a lot of you do. Maybe because I was a cardiac nurse so long, or maybe it just doesn't trigger that part of me. I just don't know. I always hate the fact that I'm going to feel crappy for awhile, but that's about it. I hate that I really don't do anything with my husband, but he's a homebody and tired from working 60 hours a week to support us. I don't have small children anymore, just my youngest is very ill, like yours, only with different ailments. I think he's a little potsy, but we don't go there yet, as he's not to symptomatic with it. Just gets tachy easily.

So, there you go. He was supposed to be the best, and I don't take meds for it, just get a few benefits from a drug I take for something else. If I get really tachy again, I'm sure my doc will want to fiddle about with drugs again, but won't because I told him I'm through with that stuff. morgan

[danelle]

Morgan,

Interesting info! Good grief, I think half of us on here are nurses. Interesting I do know now that I was born with my POTS though but it is just interesting how many nurses have POTS. It is comforting to know that you, being a cardiac nurse, don't get panicky. I try not to and I can usually handle some tachy and arrythmias here and there but when it gets bad so do I

I guesss you have seen your share of arrythmias at work, maybe I should just relax more and go with the flow-quit fighting it so much(I am so OCD, it is ridiculous )

Sophia,

I think alot of us have T-wave problems, that's interesting too. Also, one of the doctors told me about passing out all the time too because of the POTS if the ablation was unsuccessful. I appreciate your input!!

[morgan617]

I was born sick too, so don't know if it's nursing, but certainly the stress associated with nursing can't help. I DO have OCD on top of everything else, but typically not health related issues. However the meds they gave me for it put me in the hospital for 5 days. Will deal with obsessions and compulsions thanks very much....morgan

[danelle]

DITTO , what did they put you on?

[EarthMother]

One good thing about POTS is I have lots of down time to read ;-)

Here's my favorite OCD book -- it's really way more than ocd.

THE MIND AND THE BRAIN by Dr. Jeffrey Schwartz

It's all about neuroplasticity and raises some really interesting implications ... or maybe APPlications for us to consider.

Danelle if the arythmias are driving you batty (& your docs confirm they aren't dangerous) then you really may enjoy this book.

Hugs to all.

EM

[Ernie]

Hi,

Last year I was offered a pacemaker and last weak an adrenalectomy. I refused both of them because I don't think it would solve my problems.

Maybe you could talk about it when you go back to Dr Grubb.

I decided a long time ago that I would accept removal of body parts only if my life was at stake.

Ernie

[EarthMother]

Ernie,

as I read your post I imagined those latenight infomercials.

"You can't beat this OFFER. One week only adrenalectomy for only $999.99. Call now and we'll throw in a pacemaker at NO ADDITIONAL cost. That's right two completely useless (for your condtion) and totally invasive medical procedures for the price of one. You ca'nt afford NOT to call. This offer won't last. But wait! The first 100 POTS patients who call today will get a free abalation. We don't even know what that is folks, but we know you'l be wanting one of these so CALL NOW!"

I love you all.

EM

[morgan617]

EM, you are too funny They put me on anafranil when it was investigational. I was in a study program. Then when I had the reaction, they just cut me off. Big bummer, as I had a rebound effect and didn't sleep for about 5 days. What a horrible time, although I don't remember most of it. The psych doc that got me involved in the program felt so bad about it, he decided it was a PSYCH response and called it a conversion reaction. Good God, you just can't win. For all you nurses out there, I was taking 175 mg of a tricyclic antidepressant and they cut me off totally, no weaning. So The reaction in the ER and the subsequent withdrawals from a high dose of tca's was a conversion reaction....what a bunch of duhs This was way before my diagnoses of OI, but it gave me awful tachy and tremors, and weird dreams. I like my ocd better than the treatment thank you very much, but I do have the pleasure of having a big ol psych record to look back on. (When I saw him, I said I didn't care what I had to do, I needed some sleep, so he told me I HAD to go to a nut ward or he would have the police escort me) I spent 2 days there, as by the time I got there the withdrawals were finally wearing off, so I was awake the first night and slept the second and was okay. So they cured my CONVERSION REACTION in one whole day. I have a month of my life where I remember about 6 things. I will say, the anafranil completely took away my symptoms without any other treatment, but the cost wasn't worth it....morgan

[Ernie]

Hi EM,

I really like your sense of humour. You always make me laugh. You come up with such interesting stories or answers.

Ernie

[Ernie]

Hi Morgan,

The more I learn about doctors the more I find them irresponsible. How can they say you have a conversion reaction when you are stopped cold turkey from an antidepressant!

I had something similar with metoprolol. When I was taking it I was fainting x3 more than without it. I went to the ER and the doctor told me that I was fainting more because I was afraid of taking the medication. He then told me to see a psychiatrist. That was also before I went to see Drs Grubb and Goldstein.

Ernie