VNS Implant

[valeriedl]

I was wondering who else out there has a VNS implant?

I wanted to see if you react to it in the same ways that I do? I've had mine for about 4 years now.

When I think I might be having a seizure and I use it I'll get a tickle in my throught. When I use it and I am having a seizure that tickle won't be there until I come out of it.

Normally when i have a seizure I blank out during it and alot of times I don't use it because the seizure just hits me and I don't know it was coming on. Other people who are with me will use it on me however when I am in the seizure.

Recently I've been having little seizures where I'm not blacking out. I'll just get dizzy, things in the room won't seem right or I'll get confused. That's when I'll know to use it and I assume I'm not feeling the tickle because that is a seizure coming on. I'll notice that after a few minutes I'll feel the tickle and I'm back to normal.

How does anyone else react with theirs?

 

[epileric]

You might want to check out the VNS Message Board if you haven't already. There's lots of people who have a VNS there.

The person who started it is also a member here.

 

[AmandaLynn]

Hi Valeriedl,

I've Had the VNS Implant since 2002. I've also always gotten that tickle, I would say up the left side of my neck when the Magnet is used.(Isn't that a funny feeling)

I also have the seizures that I dont see coming on so I don't get a chance to use the magnet myself either. my friends/family will help out with that if they're there just like you have said goes on with you Thats the whole reason I make sure to carry that extra magnet with me always.

I've had the problems sometimes where the little numbness going into jerking wasnt always stopped by my VNS (Numbness/little twitches are my tiny seizures), so I'll notify my Neurologist to get it checked and sometimes ajusted and that AJUSTING seems to really help that situation usually.

So if it's not assisting you in the ways you desire I would say contact your VNS Doctor and get it checked up.

AmandaLynn

 

[valeriedl]

I get it on the left side of my neck too. I think he cranked it too high on my last visit because when I think I might be having a seizure and use it I get a seirous shot up my neck and half way down my throught. Then I cough like crazy for about the next 2 minutes. I'm going to have to tell him to lower it a bit at my next visit.

The VNS didn't stop me from having seizures completley, they just helped with them. I had seizures that would last 15 minutes or longer before I got my VNS. Now when I have a seizure a bad seizure it only lasts about 5 minutes or so.

If I do get those goofy feelings that I said above - things don't look right or I'm getting confused I'll use it and then be back to normal in a little bit.