Hey guys, I got my VNS turned off. Yes, I had a small headache but I was affraid it woulld soon get worse....and I have no way to get to the Dr if it starts to hurt like it did before. Thats part of the reason I got it turned off instead of down. Also I'm am going down on lyrica then soon will start vimpat (a new med coming to the U.S. -- it's in the UK now). If I get a headache then, I'll know it's the med & not the VNS. :unsure:

All you can do is try! Best of luck with your new meds.

Fast question: did you have headaches like this before the vns?
The reason I ask is because Scott's vns caused Intracranial Hypertension and Papilledema. He developed headaches that became so severe he thought his head was going to pop open. As the headaches got worse he started going blind off and on and throwing up too. He kept telling us to "make that black spot go away" and we thought he was seeing a small spider or something that we simply couldn't see where he was pointing. After he was diagnosed we realized the 'black spot' he was seeing that we couldn't see was he was completely blind at those times and was trying to see around the big black spot. The things we learned the very hard way thanks to his vns.......
I hope that the headaches will stop now that your vns is off. Scott's didn't until after he had it removed and then it took about a year later before he quit having them completely.
I'm sorry that you are dealing with this. Take care, Fay

:D HI Lorkon!

I wish you the best of luck with your new med and having the VNS shut off.

In my opinion, having headaches that are so disabling only defeats the purpose of VNS treating depression or seizures. Fortunately, some people's headaches do go away in time with adjusting to VNS, but unfortunately, there are many that the headaches persist and get worse. VNS may have been the culprit to your headaches because they stopped when it was shut off, then began again when it was turned back on.

Thanks for the update and hope to hear from you again soon!

Take care!
B)