We don't see many JET patients around here and rightly so as it's a very rare condition. If I may ask a few questions: What tests were employed to diagnose your condition? This started to happened out of the blue? The reason I ask this is I believe that JET is either congenital and first occuring at a very young age, or occurs following cardiac surgery. Have they done blood electrolyte testing? Finally, how fast is your heart rate while having one of these episodes?
Your current doseage of metoporol succinate is very small, so you have a lot of room for adjustment. My cardiologist has told me that he has patients on dosages up to 400mg, I was on 200mg myself for a brief period. However, I wouldn't be surprised if you find that it does little to prevent episodes. There are many other anti-arrhythmics that can be tried as well. Metoprolol is a very common beta blocker, and I've always though of it as the first anti-arrhythmic that's tried. You can get into the serious stuff down the line, if you know what I mean!
You can find a lot of information about JET online if you query JET by it's full name. As you may already know, it's something that needs careful monitoring and you sould be watchful of any changes in symptoms.
Something else I wanted to mention to you. Your diagnosis is so very uncommon, and the way it manifested itself so many years later, that if I were you, I'd go right out and seek a second opinion.
Yes, I agree with Tom. Since it is so rare definitely get a second opinion.
Hi Tom & Michelle, I just received a second opinion from UCSF. They want me to have another EP study and possible ablation. (i had one july 26th thats when they said i had JET) they called all the other electrophysiologist into the little control center and showed them the screen while I was in a tach. I felt like a test object. They were amazed.... :(
UCSF (my 2nd opinion place) told me its possible that its JET or a junctional type but they wont know unless they "get in there" (my heart). Doc said he'd review my EP study from July but ultimately won't know exactly (he will have an idea only) what he's dealing with unless he's in there.
I'm on 25 MG because I'm very tiny. They did bump me up to 50MG a few weeks ago however, it bottoms out my BP. 25mg keeps my blood pressure stable. (I run low without meds) beta blockers bring it down more. As for jet it is possible to have acquired it. It's very rare though. When I have a tach I jump up to the 142-180 range. This whole tachycardia thing blows my mind... No one can tell me anything! I ask why did I acquire it? What caused it? Etc. docs just say: " it happens, we don't always know why". So frustrating to me. I feel like there has to be something that Is causing it??? They only thing I can pin point as a potential cause was BC. I had lots of problems with it in the past. Oh, and my tachs follow a pattern. Once I start my monthly cycle no tachs until I start my PMS weeks then they run ramped. :( I'm just a big mess. LoL!
Tom, I have read all the research online about JET but it mostly refers to congenital or post operative. There is not much about acquired in an adult. I'm hoping UCSF can help me.
Oh, and yes I have had electrolyte testing done and I have it done every time I end up in the ER. Everything always comes out good. I have also had hormone testing and dopamine, thyroid etc testing. Everything is always prefect. ??? So I'm as clueless as my drs. LoL. I have also been on several meds the only one I could handle was metoporol. Oh goodness flecainide... I felt like I was dying :( verapamil, etc. all very yucky side affects for me.
Well, do keep vigilant of any changes in your condition. As you may already know, JET can degrade into serious situations. Let us know how you make out.