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VNS clearly not for everyone!

Tue, 04/19/2005 - 18:10
I had to post this here as I posted in the General Folder but I find this a good place this. I had the VNS implanted last Fall, lost my voice for 8 weeks due to vocal cord paralysis, once back I could tell that my voice/throat were far from being thealed . It left me very uncertain I would ever turn it on and so 6 mnths after having more seizures, I had it set at the lowest setting, we increased it slightly and had to return the setting to the lowest possible as I was too sensitive to it. I was choking,hoarse,not sleepy well,had an overall feeling of listlessness my cognitve functions were cloudy and extreme fatigued all of this is unusual for me.Over the 5 weeks that I had the VNS on, my seizures increased from a norm of about 4-5 a month to having 18 in a five week period, something I have ever experienced in 36 years of Epilepsy. I could not tell you it was solely because of the VNS and will maybe never know. So on tuesday of this week I had the VNS turned off, since then in tow days time others have noticed I am back to my real me and many of the above symptoms I was feeling are reduced, gone or getting much better. It is like day and night. I truely feel like a different person. I now feel certain I will never use it and have the battery pack removed. I feel it important to say here that for some it is a wonderful improvement over the seizures they are having. For them I truely am happy and wish I could have been one of those. but I know there are many unsure if it is right for them or how it could impact them. SO as an advocate of why it is important to know all you can both the pros and cons of this options . Which I honestly can say I did not know enough and for this I regret it greatly. Plus knowing human stories of what happens for others.May each of our Journeys be lightened by our proactive learning. Best to all out there!

Comments

RE: RE: RE: VNS clearly not for everyone!

Submitted by 38benny on Fri, 2005-04-15 - 21:13

HEY - This is JoAnne  - aka 38Benny - Yes my VNS is turned on and I'm still on Topamax 400mgs in the morning 400mgs at night... It works really well for me... ESPECIALLY THIS WEEK... I went over a month without any problems but now they are coming up again constantly and the VNS is stopping them - I just get exhausted after the seizure/ or using it - I don't know which... But hey I'd much rather them stop than continue to torment me...

JoAnne

HEY - This is JoAnne  - aka 38Benny - Yes my VNS is turned on and I'm still on Topamax 400mgs in the morning 400mgs at night... It works really well for me... ESPECIALLY THIS WEEK... I went over a month without any problems but now they are coming up again constantly and the VNS is stopping them - I just get exhausted after the seizure/ or using it - I don't know which... But hey I'd much rather them stop than continue to torment me...

JoAnne

RE: RE: RE: RE: VNS clearly not for everyone!

Submitted by Yakota on Sat, 2005-04-16 - 11:17
Hi JoAnne. I am sorry to hear that you are having more seizure as of late but am glad to hear that the vns is working to control them. When were you inplanted? How long has the vns been turned on? Do you find yourself reaching for the magnet a lot? How many combinations of different drugs did you try before you decided on vns therapy? Do you know a lot of people that use the vns to control seizure? Have a great Saturday. Goodbye. Yakota

RE: RE: RE: RE: RE: VNS clearly not for everyone!

Submitted by 38benny on Sun, 2005-04-17 - 09:57

Hello - The vns is on every five minutes for thirty seconds. I was implanted in 2001. Its been turned on the whole time. I went through TOO MANY drugs <some that made me nasty> before my dr. told me about it - I don't usually reach for it a lot - THIS WEEK IS AN EXCEPTION TO THE RULE! Its wonderful to have it on me! Until I got on this site I didn't know anyone else with it! Any other questions?

Sorry its been awhile since I got back to you I have been REALLY out of it. For some reason the seizures have come on morning noon and night. I'm getting the visions that I used to get as a kid <I'm 32> and I haven't had them since I was in high school so its extremely bizzare. But I have been sick with other things too - so I figure thats probably the reason... So far today haven't had ANY <KNOCK ON WOOD>... lets keep it that way! My tongue kills from biting it!

Talk later

JoAnne

Hello - The vns is on every five minutes for thirty seconds. I was implanted in 2001. Its been turned on the whole time. I went through TOO MANY drugs <some that made me nasty> before my dr. told me about it - I don't usually reach for it a lot - THIS WEEK IS AN EXCEPTION TO THE RULE! Its wonderful to have it on me! Until I got on this site I didn't know anyone else with it! Any other questions?

Sorry its been awhile since I got back to you I have been REALLY out of it. For some reason the seizures have come on morning noon and night. I'm getting the visions that I used to get as a kid <I'm 32> and I haven't had them since I was in high school so its extremely bizzare. But I have been sick with other things too - so I figure thats probably the reason... So far today haven't had ANY <KNOCK ON WOOD>... lets keep it that way! My tongue kills from biting it!

Talk later

JoAnne

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