Very complicated tachycardia even after 2 ablations!! Please help!!!!!

[ccu nurse]

I am a 25 year-old female. I am a R.N. who works in the CCU unit at our hospital. I had battled uncontrolled HTN and tachycardia even in highschool but no one ever tried to find out why. I was placed on meds and that was it.
Last July I was working in the unit when I suddenly became very sick. I had a pre-syncopal episode and was having CP and SOB. When I hooked myself to the moniter by heartrate was near 200 and the rhythm appeared to be a very fast sinus tach. I was placed in ICU and given meds to finally slow my rate. After that point everytime I would even start to get out of bed or walk my rate would shoot back up to 150-160. We had a new EP doc at my hospital who sent me to Louisville to have an ablation. The first ablation was done in August and it took 9 hours. I returned home on meds and within a week my resting HR was back to 160 and I was miserable. I went back for my second ablation in Oct. since meds weren't controlling and this ablation lasted 10 hours. I returned home and within 3 days my palpatations were terrible and I had a syncopal episode. When I went to my doc my rate was dropping down to 30 at times with freq PAC's and would also go back up to 150's. I was placed back in the hospital and received my dual chamber pacemaker and I was left on my meds for episodes of tachycardia. I continued to have lots of problems. I was having episodes of 2:1 block,junctional tach with rates 100-140's,and other SVT's with rates up to 220's.I was also having some pacemaker syndrome. I was tried on Sotalol, Flecainide, and Rhytmol plus all mixtures of beta blockers and calcium channel blockers with them. Still no relief, I have spent lots of time in the hospital and have not been able to work much at all. For the last 4 months I have been taking Sotalol 160mg BID, Verapimil 240mg BID, and Tenormin 50-100mg qd .I had been a little better until last week I had another syncopal episode at work and my BP dropped to 50's systolic. I was placed in the hospital and given fluids to try to raise BP. They stopped my meds at that time because I was also being just paced at the time with no tachycardia. But of course within 48 hours my heartrate resting was back in 160's and was continually changing rhythms going from junctional tachs to atrial and sinus tachs. The terrible neck beats are driving me crazy. I came home from hospital and was back on all same meds as before. The next day I had a terrible episode of tachycardia with rate above 200 that lasted for over ten minutes that I finually broke with combination of vagal maneuvers and carotid massage.It converted back into that junctional tach with those terrible neck beats and its been continuosly miserable since then. Please give me some advice on what to do? I feel so tired and weak that I can't work. Should I consider another ablation? My doctor talked to a guy named Warren "Sonny" Jackman at the Oklahoma University a few months ago, but he said my case was very complex and to try to manage with meds if possible to prevent total AV node ablation.They also feared that the focus might move to a lower point even after another ablation and that the tachycardia would return again as before from different place. I have to have some relief though. Any suggestions?????I will try anything at this point.

[CCF-M.D.-CRC]

Dear ccu,

Dr. Jackman is one of the best in the country so I'm not sure what I will have to add.  Your doctor may want to talk to Dr. Natale here at the Cleveland Clinic.  His number is 1-800-223-2273 extension 44293.  Best wishes.

[Lyn2]

Wow, I can surely sympathize with your situation.  I am 33 and my story is almost identical to yours.  I also had 2 ablations lasting about 10 hrs. The first one, my rate went up within 2 weeks also, had another which left me in a junctional escape rhythm.  Very long pauses 7 seconds, and a rate of 20 -30bpm.  Spent a great deal of time in ICU.  Was put on coumadin because during the ablation it was discovered I had an atrial septal defect.  They wanted to wait as long as possible to put the pacer in because they worried I would have a stroke. They were only able to wait a couple days. I had the pacer in on coumadin.  Developed severe hemotoma, but only a few TIAs, no major stroke.
Now, like you I have the very high rate episodes, accelerated junctional, atrial tach, a-fib with aberancy and atrial flutter.  I have been on every conceivable anti-arrythmic.  Currently I am on amiodarone which I have been taking for 6 months. It is controlling my rhythm better than the others.  Unfortuneately I am developing some toxic effects (neurological and liver).  Big decision which treatment is left.  I too, have been told that my next step is to ablate the av node.  I am on coumadin and will be for the rest of my life I have been told.  Oh, the other funny thing is I also have some type of pacemaker syndrome.  It truly is a big mess isn't it?  Can you fathom how similar our stories are.  Mine all started during pregnancy.  What was your original arrythmia that was ablated?  Please email.  I would really like to know what you end up doing.  Have you tried amiodarone?  Have your doctors said anything about it?
My email is tim-***@****.