I would like your opinions on VNS

[arnie]

Hi all! I'm sure there has been lots of discussion about vagus nerve stimulation, but I decided to start a new thread because 1) I don't feel like doing a search; 2) I don't want to necro an old thread; 3) people's opinions may have changed; and 4) I want a thread all to myself!

Anyhow, I'm tired of my very-poorly-controlled simple partial seizures. There are times when I think I will just live with them, and other times when I really hate them. I have been on 5 different meds, including various combinations, and, except for Lamictal, they have all given me unacceptable side-effects and still not controlled the seizures, even if I get to a therapeutic level.
I'm planning to talk to my doc and see what he thinks about VNS. What do you guys who have had it think of it? Would you recommend it? Discourage it? Be neutral on it?

Thanks in advance for your opinions!

(PS, I will probably do a search anyhow, but I really would like fresh input!)

 

[valeriedl]

I've had epilepsy for 10 years and got my VNS 6 years ago.

It's not something that's going to start working the day you get it and be able to walk out of the hospital being able to use it. The neuo has to turn it on and find out what settings work for you. This may take a few months to do. If you are still going to be taking meds with it then the dosages will need to be figured out also.

My neuro suggested it because he had tried all different sorts of meds and dosages but nothing seemed to be helping with my seizures. I was having on average 5 a week and they were pretty bad, I very rarely had grand mals though.

After getting it I am still having seizures and taking meds but both have decreased a lot. I'm having on average 5 seizures a month and they aren't nearly as bad as they were before.

The only real problem that I have is that I don't get an aura before a good bit of my seizures or if I do get one they are pretty short and by the time I realize that I'm having one it's too late and I have the seizure. If I do feel the aura and I use the magnet it will almost always stop the seizure from coming on. If I am having the seizure and someone uses the magnet on me it will bring me out of the seizure pretty fast.

I'm glad that I got it because it's helped me out a ton.

 

[Nakamova]

I know you don't want to do a search Arnie... but when you're ready, these links might help:
http://www.vnsmessageboard.com/
http://www.coping-with-epilepsy.com/forums/tags/vns.html

 

[Cint]

I know you don't want to do a search Arnie... but when you're ready, these links might help:
http://www.vnsmessageboard.com/
http://www.coping-with-epilepsy.com/forums/tags/vns.html

I've already given you my opinion, Arnie, but here is another link that is of great help:

http://us.cyberonics.com/en/vns-therapy/

Like Valerie, the VNS has helped me out tremendously. You'll find that most on the vnsmessageboard.com haven't had much success with the VNS. Like with meds and treatments, there will be side effects. It does effect one's voice and can cause shortness of breath and it isn't a cure all.

 

[arnie]

Thanks for the links, Nakamova and Cint. I did do a quick search, and one of the things I found was the "VNS Message Board". That sure seems like a place with an axe to grind! It also seems that most of the threads were started by the same 2 people. I think I will steer away from that. I will go check out your links, however. Cheers!

 

[Emptycup]

My mother was diagnosed with a tumor at age 45. After treatment she had seizures that would not respond to inhuman levels of meds. The VNS has offered her a so much help that she could reduce many of her seizure and psychiatric meds. For our family it has been a blessing.