POTS

[bethanym26]

A year ago I was diagnosed with postural orthostatic tachycardia after a 4 month inpatient stay at Mass General due to sustained pulses in the 180-220 range.  I was stabilized with methylphenidate (which is actually very sedating for me despite the fact that I don't have ADD or any symptoms of it) and florinef.  For approximately 10 months my pulse came down to the 100-140 range which was very tolerable for me.  Then in october I required a 6 week hospitalization at Beth Isreal Hospital due to another run of pulses sustained even during sleep between 130 and 200.  During that hospitalization I also experienced several runs of 10 beats of VTach and an echo showed signs of a decrease in ejection fraction from 65 last summer to 40.  I have some of the best doctors in this field including some highly published physicians on POTS (Novak, Lipsitz, Freeman)but they are experiencing dueling stethoscopes and I don't know what to do.  Some of the doctors feel like we should just stay the course we're on for a while despite the fact that due to the rapid pulse I'm unable to work at present because of frequent loss of consciousness and one seizure believed to be due to an episode of severe hypotension with decrease oxygen to the brain.  Other doctors on the team fear I'm developing a tachycardia induced cardiomyopathy and want to oblate the sinus node and pacemaker me.  And I'm stuck in the middle not knowing what to do and just wanting my life back.  Any thoughts, opinions, advice-- I understand the risks of pacemakers with POTS which makes it that much harder to know what to do!

[CCF-M.D.-CRC]

Dear beth,
This is not an easy decision and you need to take the advice of the doctor you feel the most comfortable with.  We tend to take a more proactive approach with ablation at the Cleveland Clinic and have had good results in curing inappropriate sinus tachycardia with ablation.  In our experience most patients do not end up requiring pacemaker although that is a risk of the procedure.  One way or the other it is important to get better control of your heart rate as the risk of cardiomyopathy is very real.

[Lyn2]

Wow!  I couldn't let this go by without commenting.  You are in the same position I was a couple of years ago.  I would like to share my experience. I had an ablation of my sinus node at Brigham and Womens in Boston.  I went for about 4 yrs. with tachycardia, similar to you.  I was tried on many different medications.  Finally because of the tachycardia induced cardiomyopathy that they feared would soon happen, I was told that it was quite necessary.  I also struggled constantly with not passing out all the time.  It is a difficult rhythm, because it is so fast so constant.  Anyway, I had a new type of ablation, that I would suggest to you.  It is a modified ablation of the sinus node, and chances are you won't end up with a pacemaker.  For myself however, the tachycardia came back very quickly and I ended up needing another ablation.  After the second one, I was sent home, only to have my pulse go way too far down.  I was having extremely long pauses, and my pulse was in the teens.  With this I couldn't even get out of bed, because I was completly passing out. I spent a long while in intensive care before they put the pacemaker in, because there was so much scar tissue from the ablation, and the discovery of a whole in the upper chambers, that they feared I would have a massive stroke if they went back in.  I finally got the pacemaker, and was told I had sinus node dysfunction.  I really did not know what that was at the time, but now I do.  I now have the pacer, no problem, but I also have a myriad of other more serious arrythmias, for which I must take coumadin and antiarrythmics plus all the other meds. I was on before the ablation.

So the point is, it is a very difficult decision to make, and I understand your doctors disagreeing.  I don't even really know what to suggest.  If everything went well, you would be cleared of the tachycardia, and you could go back to living.  I am only 33, and I can no longer work and I'm in stage 2 heart failure. Please, I am not trying to scare you.  I think my situation was extremely odd, with other factors contributing.  I told my doctor that I did not regret having the ablation, because it was absolutely the only thing to do at the time.  I had to get out of that situation.  

I guess the only thing I would say is, try meds. or see about a modified ablation.  You don't want cardiomyopathy from remaining in tachycardia either.  The ablation for the sinus node both times took about 9 hours.  I hope things go well for you.  Let me know what you decide.

[bethanym26]

But if they ablate my sinus node what will regulate my heart rhythm if I don't have a pacemaker put it?  I'm quite interested in your previous response because it sounds like the best of all possibilities thus far for me and no one around here has mentioned it (but read the response from the other individual who answered my question and you'll see some of the issues around having POTS in Boston.  I know its one of the hubs of academia and medicine, but POTS somehow escapes current cardiac and internal medicine study, patient experience, and understanding here.  I'd love to hear from you one more time to see if I might need to flee boston and be cleveland bound for a few days.  Thanks.