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Old 10-31-2012, 08:24 PM
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VNS side effects


I have been considerating a VNS after reading a lot of these posts. I mentioned it to my neuroligst today and he thought it was definitely an option if I wanted to explore it. I wondered if at age 60 it was too old to take another step like this, and he said no, it's never too late. I have tried every combo of lots of meds without complete control. I'm hesitating becausen't understand what to expect as side effects, and also how the magnet works. Any info would be appreciated.
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Old 10-31-2012, 10:07 PM
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Hi kathya410,

Bird Bomb (one of the CWE members/moderators) runs this site at the link below which should be very helpful to you:
http://www.vnsmessageboard.com/

In addition, the link below will take you different CWE threads discussing the VNS:
http://www.coping-with-epilepsy.com/.../tags/vns.html

Best,
Nakamova
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Old 11-02-2012, 07:56 PM
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I've had a VNS for 5 years now and really don't have any side effects from it.

When the strength is changed I'll feel a tickle in my throat for a few days, if even that long, then my body gets used to it. If you use the magnet when you're not having a seizure it will really tickle your throat and you will start coughing. My husband says that I clear my throat a lot more now that I have it. Other than that there's really nothing else.

It works sort of like a pace maker for your brain. The dr sets it to go off at certain times and at certain strengths to stimulate the vagus nerve, this needs to be adjusted to find out what's best for you.

If you feel a seizure coming on or if you are having a seizure there is a magnet that you or someone else swipes across the VNS, which is in your chest. When you do this it sets off the VNS to stimulate the VNS and it will send a jolt (as I call it sometimes) to your brain to help stop the seizure.

I am still taking meds and having seizures but since I've gotten the VNS I have alot less seizures a month than I did before. I will sometimes have a warning, maybe an aura or just not feel right, and I'll use the magnet then - I never had these before I got the VNS. I still have seizures without warning and I don't know that I'm having it so someone else will have to use it on me. It also brings me out of a seizure a lot faster.

If you didn't find answers on one of the links or if you want to know anything else let me know.
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