The Most Underwhelming VNS Update Ever (Yay!)

Last Tuesday, bright and earlyish, my VNS (alias Vanessa) was activated. It/she is thus now doing more than just bulging out of my chest like a weird body mod.

My husband and I got to the hospital with some time to spare, so we wandered around for a bit before heading to the epilepsy clinic. Once it wasn’t too early to arrive, we made our way there, I checked in with the receptionist, and we sat down to wait until my scheduled appointment time.

It came. Half an hour later, I was still nervously turning the pages of my book. Another half hour passed. At that point, a friend arrived for her own appointment—a nice surprise—so I chatted with her for a while. And then, finally, a resident emerged from the inner chambers of the clinic and called my name.

I’ll skip the examination with the resident and flash forward to when my epileptologist entered the room/picture: that was, after all, when the magic really happened (“magic” in the least impressive, most relieving sense possible, but I’ll get to that). He carried with him a white box that looked like it could very well contain an Apple product. He also had a black tablet.

“Ready to go?” he soon asked. I nodded. The resident sat nearby, his excitement palpable (he’d told us before going to get the epileptologist that he [resident, not epileptologist] didn’t have “much” experience with VNSs—I got the feeling that not having “much” experience might mean having “no experience at all” with them and that he was looking forward to witnessing a VNS activation firsthand).

“Yep,” I replied.

My doctor informed me that I’d probably feel a big jolt and a choking sensation once programming was complete. He went on to say that most people notice a voice change while the VNS is stimulating.

The VNS “wand” was now out of the white box and attached to the tablet, into which my epileptologist was punching the desired parameters. After asking me to hold the wand over my VNS, he pressed the activation button. I could see a progress bar on the tablet’s screen and watched, half curious, half nervous, as it neared 100%. Would I jump out of my seat due to a huge hit of electricity? Would I choke on my own saliva? Would I get major robot-voice?

As you may have guessed by now, none of the above happened. In fact, I didn’t notice any change at all.

“Nothing?” my epileptologist asked, observing that I hadn’t even flinched. I confirmed that I’d felt no effect whatsoever. He interrogated the device to make sure that it had programmed properly (it had) then said that he guessed I was “one of the lucky ones” (I’ve since spoken to two other people who have a VNS, and they both said that they didn’t feel much at this level of stimulation; either my epileptologist was setting me up for a pleasant surprise if I experienced less than a hair-raising jolt, or else all three of us are “lucky ones”).

Before I left, he explained my VNS’s current settings and showed me how to use the VNS magnet to give myself an extra-big boost of stimulation when I have an aura. I’ll have the level of stimulation raised next week, and I’ll keep going back every two weeks or so until the device is firing at a therapeutic level—it’s currently at 0.25 milliamps (I think), and it should eventually be at 2.0 milliamps (I think), so it’ll take a while.

And there you have it: that, in short, is the boring, slightly abbreviated story of how my VNS was turned on. Indeed, the most riveting part of our trip to the hospital was probably our post-appointment, pre-home lunch (God how I love mediocre food-court sushi). Don’t get me wrong, though—I’m grateful for the less-than-exciting outcome to Operation Activate Vanessa. Besides, there’s always the possibility that I’ll be seriously jolted next time.


3 thoughts on “The Most Underwhelming VNS Update Ever (Yay!)

  1. Thanks for your post. It’s illuminating to read the details of the experience of having a VNS. It may not seem like much to you, but it is helpful!

    1. Sorry I missed this when you posted it! My pleasure—let me know if you have any questions about my experience; I’m happy to help in whatever way I can (keeping in mind, of course, that I’m not qualified in any way to give medical advice!).

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