Doc Wants Me To See An Electrophysiologist:

[LindaJoy]

Hi, everyone,

It's been awhile, again. I'm still doing the doctor circuit. I think, though, we're starting to focus a little more. I'm now seeing Dr. Shields at CCF for POTS, as well as Dr. Alsheklee at Case Western (Cleveland) for POTS, Drs. in Cincinnati for my eosinophilic disease and an allergist at Ohio State for my severe atopy and numerous, numerous food allergies. I'm allergic to more foods than I ever dreamed possible. Pork's the only meat I can eat, and I'm not a big pork fan, but it's better than nothing! A couple of weeks ago, my allegist put me on a steroid, and aside from the POTS symptoms it made worse, I actually felt (immunologically, G.I.-wise) much better! I put on six pounds, was able to eat more than I've been able to eat in months and months, didn't have the rushes I was constantly having (with diarrhea, etc.), but I had to go off of it in preparation for another series of EGD's and colonoscopies in a couple of weeks.

Anyway, along with everything else, my heart has started to show a few arrhythmias that Dr. Shields said is not consistent with POTS. For instance, I sometimes go into a severe arrythmia (painful along with irregular, leading me to nearly blacking out) and bradycardia (in the 30's) after I eat. I thought this was from POTS, but Dr. Shields said no. Any comments on this?

Also, I've been on holtors that have shown atrial flutter. Again, I thought POTS was to blame. Nope. Again, not POTS, according to Dr. Shields. Also, some heart block has shown on the holtors. Same story.

Dr. Shields now wants me to see an electrophysiologist to rule out any electrical heart problem before he proceeds with any physical therapy for my POTS, now diagnosed as neuropathic POTS, which is a new thing for me here lately, too. I need to do some reading up on that. Anyway, I had an EP study done in June of 1998 at Toledo MCO. Dr. Karas did the study, but Dr. Grubb was there, too. What they found was two pathways in my heart. They didn't ablate either one since the tachycardia was not coming down the second pathway. No more was said about that second pathway after that. Dr. Karas then said that he couldn't ablate anything with regard to my heart as my problem was overactive cells and in order to fix the problem, he would've had to have blasted 1/4 of my heart away, and should he have missed just one cell, I still would have gone into tach. His best advice was to go on a beta blocker. I was then on a calcium channel blocker for ten years.

What do you all think? I know ablations are bad for POTS patients. What about when I'm having atrial flutter, heart block, this weird arrhythmia / bradycardia after I eat? Could ablation help with these? Also, what do you think is causing all of this?

Thanks, everyone.

LindaJoy

[cardiactec]

Hi there,

A couple things. your doc is right in that atrial flutter and/or heart block are NOT a part of POTS. POTS is black and white, a sinus mechanism - a sinus tachycardia, which, though annoying, is a ''variant'' of normal in regards to a ''true'' arrhythmia problem and something that generally can be controlled without EP studies or further EP investigation.

you talk about two pathways they found and that they didnt ablate either one......usually two pathways that have two different mechanisms : two different conductiion velocities (they both pass electrical impulses differently down the heart, one slowly and one quickly) and two different refractory periods (the time alloted for the heart cells to repolarize or "relax"). this, of course is just one "set up" for electrical disturbance that can occur.....as for "overactive cells", not sure what the doc was referencing there - if just talking about increased sympathetic activation (due to pots) or what -- generally if there are two pathways that they find, that are connected together with two different conduction and refractory periods that they can stimulate the heart and those pathways to induce a tachycardia that IS NOT a sinus tachycardia (like with pots), they ablate the "slow" pathway in order for ALL the impulses to just be directed down ONE pathway and not get caught up in a second pathway, in short, causing the tachycardia........but since you said the tachy wasnt coming from or being redirected up the second pathway, it sounds like he did the right thing with not ablating.....

ablations are not recommended for POTS patients and i'm not necessarily sure what they would do in your situation, since you have both features of POTS and a definite diagnoses of primary rhythm disturbance. atrial flutter is something that can easily be controlled with ablation, ususally there is a 97% success rate at eliminating the flutter/fib via ablation - plus, on top of that, permanent med intake such as with anti-coagulants, is not needed when the flutter/fib is ablated. are you chronically in flutter or is it intermittent?

the brady you describe after you eat, have they documented or caught in on a holter or event? a rate of 30 is pretty slow....you mentioned their findings of "heart block" and i wonder if you are referring to the heart block when you talk about you bradying out after eating or if this is just a very slow sinus brady with no block caused from increased parasympathetic tone and not necessarily conduction disease...............there are a few different types of heart block - did they tell you which you had? there is first degree which is generally not a concern, second degree ("wenckebach", also referred to as mobitz type I) which is also not too concerning, mainly benign..........then there is second degree (Mobitz, also referred to mobitz type II) which IS concerning and can lead to COMPLETE or "3rd degree heart block".............for a second degree, type II or complete heart block temporary transcutaneous pacing is indicated until a permanent pacemaker can be implanted.

you situation is complicated in that you have POTS (with sinus tachy), atrial flutter (which can be eliminated by ablation) and some sort of heart block that seemingly is causing you to be symptomatic (and generally is treated with a pacemaker depending on what type of block it is)......................when do you feel the worst? with the brady or with the tachy?

sorry you're going through all of this....

i hope this helps some.........

Angela.

p.s. perhaps doctorguest, flop, or some of the others with experience here could chime in, see what they think also...and of course root everything back to your docs to say what they think is best for your situation. good luck

[LindaJoy]

Hi, Angela,

To answer a couple of your questions. I'm not always in atrial flutter. I go in and out, which I'm not sure is even supposed to be possible without some sort of medical intervention, but I'm proof that it can happen as it's happened to me and was documented on a holtor.

I'm not sure what degree my heart block is. Dr. Fouad did the holtor test, and, uh, well, I didn't exactly have any follow-up to go over the results. She just sent a letter of all these wonderfully weird and abnormal things my heart was doing, without any explanation of any of it. I guess I was supposed to know what to do with the results.

I feel better in tach versus the bradycardia. With the bradycardia, my heart goes very, very irregular. It becomes painful and I black out. Doesn't help the heart rate goes into the 30'as. It's only happened after I eat--doesn't happen every time, but happens only after I eat. What could cause this? Docs seem to be stumped. It was caught on an EKG tape while in an ER a few weeks ago. All I know is the nurse got a strip right away because my "heart is doing some crazy things."

I had a stress test a couple of weeks ago. I threw PVc's during (no surprise), threw even more afterwards (no surprise again). My heart had a hard time calming down afterwards, went irregular and still took a long time to slow. The doctor said he thought I had ventrical paras-something or other. In other words, "Wow, her heart's not beating right, but I'll be ****** if I know why." While in this hospital, I was going into heart rates in the 30's and 40's all night long. No doctors seemed concerned about this, only the nurses, who kept waking me up to make sure I felt okay.

Thanks, Angela, for the long reply. I'll admit, I'm worried, and I don't want to make any mistakes when it comes to my heart's care.

Linda

[flop]

Hi Linda,

sorry to hear that you are having rhythm problems. Atrial flutter that comes and goes can be quite common, usually called paroxysmal atrial flutter. Cardiactech is quite right in saying that atrial flutter can be ablated with a high sucess rate. Bradycardias at night are also common and usually not too concerning (I have sinus brady of 30-40 at night on holter and episodes of 2nd degree Wenkebach block at night - previously was a competitive swimmer). However if you are having marked bradycardia during the day it should be checked out especially if it is making you dizzy.

I can understand you being concerned about ablations and POTS. There was some reseach about POTS and ablations that showed that they should be avoided. The type of ablations that were done in the trial were "sinus node modifications" to try to slow down the sinus tachycardia that is part of POTS. The patients didn't get sustained benefits and several ended up more symptomatic than before the abation was done or needing to have pacemakers implanted.

There is a big difference between ablations for the POTS sinus tachy (as in the above trial) and ablations of abnormal pathways to stop arrhythmias or ablations for atrial fibrillation/atrial flutter.

With the symptoms that you are describing I think that your doctor's suggestion of seeing an electrophysiologist is very sensible. It is important that the EP doctor is knowledgable about POTS so that they know which type of ablations should be avoided. I'd advise you to make an appointment with the EP and see what they have to say - you can always ask them to write down / spell out difficult terms so that you can research them afterwards.

Good luck, I hope you find some answers.

Flop

[mom4cem]

I could not possibly give any better info than cardiactec and flop, especially since I don't know what I would be talking about

But, you have had such problems with losing so much weight, not being able to eat, that your electrolyte system I would guess is probably all over the place. I know, correct me if I am wrong guys, but low potassium and/or low mag, or even too much of either can cause a host of potential arrthymia problems too.

Have they spoken or mentioned any electrolyte problems?

I'm glad to hear you have been able to eat and seems the Dr's you have settled with are truly helping. Hope this all settles down too.

P.S. glad to see you back

[flop]

mom4cem - thanks for adding the electrolyte issue. You are quite right that disordered Potassium and Magnesium levels make you more susceptible to cardiac arrhythmias. Can you get your electrolytes checked anywhere Linda?

Flop

[LindaJoy]

Hi, again,

Each time I've been hospitalized, my potassium and such have been tested, so I've had it done a lot in the past year! (18 hospitalizations since March, 2006, not including ER visits). My potassium is always low, around 3.1, so I'm given supplements enough to bring it up, then I'm discharged. My docs (when I've had them) have always said that a potassium of 3.1 shouldn't be low enough to cause arrhythmias. Is that true?

I've started drinking prune juice, since it's a good source of potassium and I'm not allergic to it (one of the few foods I'm not allergic to). I just had my potassium level checked again last Friday (my heart doc ordered it, along with a 48-hour holtor). I don't know the results yet.

I don't think my magnesium has ever been low. My heart doc had that checked, too.

I appreciate the suggestions and support. Thank you, everyone!

Linda

[sfrnklin]

Linda Joy,

I don't know if this helps, but I have POTS and had documented A Flutter that I was going in and out of that was causing terrible symptoms. Dr. Grubb did an EP Study and Ablation on me and I DID NOT go into heart block or have any complications from what so ever. Matter of fact, it made me feel 95% better with my POTS symptoms. Before ablation, I was contemplating going on disability and now I'm working 12- hour shifts again at work.

I was concerned about what you read about ablations and POTS and Dr. Grubb told me that you don't want to do an ablation to get rid of the SA node like they used to years ago cause they found that it made POTS patients worse and they developed heart block and had to have pacemakers placed. Mine was a different think altogether and he recommended it 100% and said I would definitely befefit from it and he was right.

I would definitely see an EP doctor and see what they have to say. Maybe consult Dr. Grubb who is an EP and very knowledgable with POTS patients.

Good luck with everything. If you have any questions or I can answer any questions about an ablation, let me know. I would be happy to email you.

Susan

[morgan617]

I was one of the "they did an ablation when they shouldn't have" Now, 3 years later, I have a pace maker. I have atrial arrythmias and PVC's, and runs of PSVT, but I believe my arrythmias are all POTS related. So ablation was certainly not helpful for me.

However, I don't think it's correct to nix it on everyone. I think if you have well documented arrythmias, that are not related to the standard POTS types arrythmias, EPS and Ablation may be indicated. You just have to be sure you are seeing an EPS that knows the difference....

Some people have EPS and refuse ablation until they can discuss what the doctor found. I just preferred to get it all done at once....but it's something to consider....good luck sweetie...morgan