daisy Posted October 9, 2009 Report Share Posted October 9, 2009 As you may know, I have been dealing with POTS and atrial arrythmias for several years. The arrythmias are getting worse and much more frequent and lasting much longer when they occur (afib, atrial tach, SVT, IST) and I can't be medicated any more than I am for them because I also have bradycardia frequently. I saw my cardiologist yesterday (who is wonderful) and he is starting to think we may need to seriously consider ablation of the AV node and a pacemaker. Yesterday, my arrythmias happened while I was there so he got to see them first hand (although we have caught them many, many times on the heart monitors). He knows that I will still have POTS and the fast heartrates but the pacemaker would hopefully stop the extremely low rates and control the atrial arrythmias. The other option is just to live with them as I have been doing but the frequency of them is truly affecting the quality of my life (which POTS has already messed up to extremes!). He has been honest with me that my case if more difficult because of the POTS and the atrial arrythmias and that are no guarantees. I am only 40 and there is no going back from this surgery once the AV node is ablated. So, whatever the results are, I will be stuck with them....My question is have any of you had a pacemaker put in and the AV node ablated due to atrial arrythmias and how has that affected your POTS? Do you feel better or worse? I know we all are different and one person's experience may not be another's but I am trying to gather as much info as possible before making this very difficult decision.Thanks! Quote Link to comment Share on other sites More sharing options...
potsgirl Posted October 9, 2009 Report Share Posted October 9, 2009 Hi Daisy~Before I was diagnosed with POTS/OI, I found out I had dilated cardiomyopathy and atrial fib. I was in congestive heart failure, and I had pretty bad bradycardia. This was diagnosed at Mayo AZ, and I was put on Coreg and Coumadin/Warfarin. Then I had a pacemaker placed for my low BP about 4 years ago. Ablation was never mentioned, but you obviously have some different issues than I do. In fact, I had never heard of ablation until I joined this forum. The pacemaker is now working about 40% of the time, and it does give me relief knowing that it'll keep my BP from falling too far, although I still get readings of 65/50 on my bad days. I was able to go off the Coumadin, which was nice - it's a pretty nasty drug. The Coreg lowered my BP too much, so that was out, too. The biggest downfall is that you cannot have an MRI with a pacemaker, and you can't go through security machines. There have been several times where I really needed an MRI, but I'll have to wait....So, the pacemaker has been good for me, but I can't offer any advice on the ablation, except if they don't need to cut, I don't think I would. Just my opinion. I'm sure you'll decide what's right for you! Please feel free to PM me if you'd like.My best,Jana Quote Link to comment Share on other sites More sharing options...
daisy Posted October 9, 2009 Author Report Share Posted October 9, 2009 Thanks for the reply potsgirl.....I appreciate it. My cardiologist attempted ablation approx. seven years ago. He tried to identify a focal point circuit to ablate that was causing the arrythmia activity but in my case virtually ever circuit was affected and there was no way he could just ablate them all. That is why he would have to ablate the AV node.....if he didn't, I will still have the arrythmias because there is no one area of trouble. The whole thing just isn't working......my understanding is that pacemakers can be removed if the AV node hasn't been ablated but once it's ablated, there's no going back (because the AV node is the heart's natural pacemaker and without it, obviously the heart won't work). His concern is still that even if the pacemaker gets rid of the arrythmias and controls the bradycardia, it will be running all of the time because of the POTS. So, although he is the head of the electrophysiology department here, he is honest enough to admit that with the POTS thrown into the mix, there is uncertainty. I really don't know what to do. When the arrythmias aren't acting up, they are tolerable but when they act up like they have lately, they are not and they really make me feel awful (although I do take comfort knowing they are not life-threatening per se although they can cause stroke if left to go on too long).Can you feel your pacemaker when it is working? Quote Link to comment Share on other sites More sharing options...
goldicedance Posted October 12, 2009 Report Share Posted October 12, 2009 I first got my pacemaker in 1996 following a sinus node ablation that left me wih bradycardia along with some tachycardia.I then developed junctional tachycardia with which I suffered for about 2 years. I then got an AV node ablation. I have been pacer dependent since 1998. I no longer have that terrible junctional tachycardia.A couple questions:1 - do you already have 2 leads? when I got my pacer they put in a ventricular lead just in case I would need it down the road.2 - what brand pacer do you have? I understand that there is a pacer made in Germany (Biotronix) that seems to have some adjustment capability for changes in blood pressure?3 -how old is your current pacer? if you do not have the ventricular lead, can they add it or do you need to get a new generator? If so, inquire about the Biotronix.Email me if you would like to talk!Good luck,Lois Quote Link to comment Share on other sites More sharing options...
potsgirl Posted October 12, 2009 Report Share Posted October 12, 2009 No, I can't tell my pacemaker is there at all, although when it was first placed I was pretty sensitive/protective of it. I have a pretty bony chest, so it does look kind of obvious if I wear thin shirts, but that's easy to avoid. I have two leads, and my pacemaker is from Guidant. So far, so good. When you go in for your pacer check every 6 months (or they can do it over the phone), they can read what's happened with your heart during that entire time. Pretty cool. I wonder why they're not treating your arrythmias/atrial fib with Coumadin or another drug? Or have you tried that and it didn't work for you...You may also PM me if you'd like, or email me, if you have any more questions. It's an easy operation, and I just stayed one night in the hospital. Cheers,Jana Quote Link to comment Share on other sites More sharing options...
daisy Posted October 16, 2009 Author Report Share Posted October 16, 2009 I have tried the anti-arrythmic drugs for the atrial arrythmias and they ended up causing neurological problems as they built up (nasty drugs!). Right now we are using calcium channel blockers for the POTS and the atrial arrythmias but it's not controlling the arrythmias......It's hard to find a drug that will work because in addition to the atrial fib and atrial tachy stuff, I have the POTS tachycardia (and inappropriate sinus tachy) and bradycardia. The drugs to help the brady make the tachy too much and the drugs to slow the tachy increase the brady.......and the rhythm just seems to have a mind of its own these days.I am very fearful of having the sinus node ablated because there are no guarantees and there is no turning back. And my Dr. admits that he is not sure how the pacemaker will affect the POTS. Because the pacemaker won't fix the POTS tachy (because those signals are coming from the brain and not the sinus node in the heart) he is concerned that the pacer will be in battle with POTS all the time and constantly be pacing and I might feel worse.Fortunately, he doesn't want to rush into this either.....I just don't know what to do at this point. But for now, gall bladder has to come out so I will take care of that and then move on to the next!Thanks for the feedback! Quote Link to comment Share on other sites More sharing options...
kayjay Posted October 16, 2009 Report Share Posted October 16, 2009 Daisy, the only person I know who had this done (at the cleaveland clinic) had it done 4 years ago in her early 40s. She did really well for 2 years and now really regrets it.She first had an ablation, then later a "full" ablation and a pacemaker.She can't undo it and she is now worse off then she was before. Please consider a second opinion with a Neurologist. Cadios sometimes forget that Pots really is a brain problem with heart symptoms. The POTS clinic At mayo (rochester) recommend that you never have this done. Good luck with this major decision. Kari Quote Link to comment Share on other sites More sharing options...
kayjay Posted October 16, 2009 Report Share Posted October 16, 2009 Daisy, the only person I know who had this done (at the cleaveland clinic) had it done 3 years ago in her early 40s. She did really well for 2 years and now really regrets it.She can't undo it and she is now worse off then she was before. Please consider a second opinion with a Neurologist. Cardios sometimes forget that Pots really is a brain problem with heart symptoms. The POTS clinic At mayo (rochester) recommend that you never have this done. Good luck with this major decision. Kari Quote Link to comment Share on other sites More sharing options...
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