pacemaker for seizures???

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

nikki24

New
Messages
5
Reaction score
0
Points
0
My neurologist brought this up and I didn't know they existed. She didn't get into details about them and I am hoping someone could ellaborate a little. She said it would be a last resort, but I still really want to know more.
Nicole
 
Hi Nicole,

I think your neurologist was referring to the Vagus Nerve Stimulator, otherwise known as the brain pacemaker. Usually it is used as a last resort, after medications don't work or brain surgery isn't an option. I had it put in as a last resort, after trying 10 meds and a failed lobectomy. It has helped diminish my seizures, but it isn't a cure all for everyone.

For more info go to http://us.cyberonics.com/en/vns-therapy/
 
What exactly does the procedure consist of? Im a little nervous b/c when I googled it thats what I saw. This is a new neurologist and I just got done with my first eeg with herand am going for my follow upon the 24th. At that time we will probably change my meds. I am currently takink 750 mg of depakote 3x a day and 1000 mg of keppra 3x a day(generic of both). If this doesnt work she wants to do the pacemaker however when she explained what little she did she pointed to her chest and mentioned something magnetic to swipe over it. ????? I am so confused about this.
 
The VNS therapy does include a magnet to swipe over the generator (pacemaker) in your chest when one feels a seizure coming on or can be used to stop a seizure for some. It helps me in stopping seizures when I feel one starting.

As in medications, there are risks and side effects, also. For me, it changes my voice when charging, makes me wheeze from time to time, short of breath and sometimes I end up with bad laryngitis from it.

Maybe this explanation will help:
http://us.cyberonics.com/en/vns-the...hat-is-the-function-of-the-vns-therapy-magnet

The VNS Therapy magnet may provide additional benefits for some people, but it is not necessary to use it for your regular stimulation. By swiping the magnet over the generator when you feel a seizure coming on or during a seizure, you or your caregiver will be able to stop the seizure, shorten the seizure, decrease the intensity of the seizure, and improve the recovery period following the seizure. You can also fix or hold the magnet over the generator to temporarily stop stimulation during certain situations or activities when even mild side effects are troublesome, for example, public speaking, singing, exercising or other strenuous activity. The magnet can be applied by any person or caregiver trained in how to use it. If you experience troublesome side effects for an extended period of time, contact your physician.
 
Last edited:
I got my VNS in 2007 and it's helped me a good bit. I still have to take meds and I'm still having seizures, but the seizures aren't anything like they were before I got it.

I believe mine sends a 'jolt' to my brain around every 30 seconds, that's the sort of 'pace maker' part of it. If I feel a seizure coming on I can rub the magnet across my chest where the VNS is impmanted and it will stop the seizure from coming on. Alot of times however I don't feel the seizure coming on but when I am having it someone else can use the magnet and it will bring me out of the seizure.

I've heard that sometimes it will work better for some than for others. Before I got it I was having around 3 seizures a week and they were very bad, some I'd even end up in the ER because of. I'd blank out for at least 5 minutes or more and I'd loose a ton of memory of the things that I would do the days before. Now I have an average of 3 seizures a month, and they aren't anything like they were before.

I still have memory problems too but things start to fade away after months instead of days.

If you have any questions about it let me know and I'll try to answer them as best as I can.
 
I had mine done through my insurance so I don't know.

One thing too when you get it you have to see the dr/neurologist every few months to get it adjusted to get the strength and timing of the 'jolts' it sends. This is to make sure it is right for you so it will work right. So it's not just a one time operation and you're done, it's something that you have to keep up with on a regular basis.
 
Ok let me rephrase thos. What does the surgery itself consit of when theyre doing the procedure?
 
Sorry Nikki24, I read that wrong, thought it said cost and not consist. That website does explain it well.
 
Back
Top Bottom