Community Forum Archive
The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.
VNS
Mon, 08/07/2006 - 13:57Topic: Surgery and Devices
Anyone out there still talking about VNS? I have had mine since Dec. 2004 and believe now that it screwed up my nerves. I didn't even notice it for about 10 months, except for the hoarseness in my speech and the slight choking sensation. Then I got depressed and didn't feel like doing anything except staying in bed. I got to worrying about every little thing and had to take anxiety medicine to calm myself down. I can't and don't drive, per doctors' orders, and this really bothers me and does tie me to home, but was just seeing if anyone else has had the same experience or been diagnosed with a VNS device that caused them nerve problems (anxiety), etc. I don't know what the symtoms are if the device reaches EOS and/or the battery gets weak!
Thanks!
tbrdman
Comments
Thanks lab for replying!
Submitted by tbrdman on Mon, 2006-08-07 - 14:21
Thanks lab for replying! May I ask how old you were when you had the device implanted? I was 60 and just on the top age of the people that this was suppose to help. I have absence seizures and had used all the medicine regimens that were available at the time, except for Felbatol and Lamictal, which I am currently on! I had to have mine turned off in June, so I could get to the bottom of what is making me ache, cause abdominal pain and be so anxious. Do you know of anyone else that has one? From what I have read, there has been some problems associated with the VNS device. Have you been told or read anything like this? What setting did you have to have yours set at? How long was your on and off times when you were having the migraines?
Thanks
I'm on my second VNS
Submitted by bobfolgerjr on Mon, 2006-08-07 - 15:40
I'm on my second VNS stimulator. I had my first one installed in 2000 and my second one installed in 2003. The only problem that I have had to date is poor battery life with the first stimulator. The battery only lasted two years. The second stimulator has just recently started to act up a a bit. However, for me the VNS was a blessing. I was suffering close to 150 seizures a week before having my VNS stimulator installed. I do get a sore throat once an awhile but for me it's a small price to pay and I was told of the possible side effects ahead of time. I still take seizures but not nearly as many a week.
Re: VNS
Submitted by lab138 on Mon, 2006-08-07 - 14:11
I have the VNS implant and although my problems are not as severe as yours it does not work like it is supposed to for starters, my glands always hurt like they are swollen, I have to keep it at a low signal or I have migrains. This was the worst decision I have made as far as my seizures are concerned, however I was a guinney pig for this surgery and we did not know what would happen with me because I do not have seizures all the time I only have them about once a month or so. I wish that I could have gotten the surgery like I wanted but they said that my seizures aren't bad enough to warrent it. What a joke I think that anyone with seizures deserves a chance and I was hoping that VNS wold be a help at least all it is is a pain in the neck.