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should i try vns?

Hi! I'm 20yrs old, and about 5 months ago i started having syncope episodes. when they first started, i would get a warning. normally i would get hot, then ears would ring, then i would faint. after the first 3 months the warnings stopped to where i would feel perfectly normal then just faint. it's always when i'm standing, occurs mostly when climbing stairs. i've been seeing several specialist and they dont really have any answers on why it's happening. they thought at first it was cause i have hypotension tachycardia, low blood pressure and fast heart rate, but after taking meds it still kept happening to where i was fainting at least twice a week. They did several test, mri's came up -, ep study -, tilt table -, ekg -, echo -.  After my docs talked to other specialist from out of state, they dicided to put a pacemaker in. since i had the pacemaker, i've now had 2 episodes in 3 weeks. They said the pacemaker had recordings, but not around the times that i fainted. They changed the pacemaker setting one last time and said if i continue to faint they want to try vns, which i guess is a pacemaker for the brain. They dont think its epilepsy but they said they cant rule it out and they're worried about my falling injuries. i had 5 eeg's and all were -. 1 of them being a 72 video eeg in the hospital, another being a 24hr abulatory eeg at home. i take imitrax and topamax for migrains, seasonal cause of the topamax, iron for anemia which started 3 months, midodrine for low blood pressure, toprol for the low blood pressure and fast heart rate, fludrocortisone, then prilosec cause of the steroid. and a multivitamin which i've always taken. If the pacemaker dont work should i try the vns theorepy? or is there anythng else i can do? i really want this fainting to stop and i'm willing to try anything, but if theres any other way around this surgery i am more willing to do that. please any suggestions is appreciated.  
1 Responses
469720 tn?1388149949
It sounds like you have had a trying time with this problem. As you know, it is quite the puzzle and it sounds like it has left good doctors scratching their heads and looking for answers. I would like to think that I would have a "magic bullet" answere but I dont think that is the case

From the workup that you have described, they have methodically evaluated you for all the medical disorders that come to mind including what this sounds like which is tachy-brady syndrome or hypotension associated syncope. And youve had the procedure that most people would offer with the expectation that the pacer would improve things but it did not.

Im no expert with VNS therapy but from what I know, I think that it is the appropriate next step to determine if you have a vagus nerve, or central nerve cause of this problem. I would say that given the length of time that youve had this problem, the number of specialists that are at a loss for another explanation and the ongoing risk to you for bodily harm and disruption of your life- the benefit of trying VNS seems to outweigh the risks of the relatively straightforward intervention

Suffice to say, I think that you are in good hands and it sounds like you've done the appropriate thing by seeking consultation of multiple specialists and second opinions at your regional center of expertise. I will go the extra step of describing your case at our conference next week to see if anyone has an idea and Ill post it if there is.

God Bless and good luck
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