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VNS clearly not for everyone!

Tue, 04/19/2005 - 18:10
Topic: Surgery and Devices
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: RE: RE: RE: VNS clearly not for everyone!

Submitted by Yakota on Sun, 2005-04-17 - 20:34
Hi JoAnne. I am glad the vns is working for you. Sorry to hear that you have had a rought time with seizure this week. Have you had any medical problems with fever lately? Fever can bring on seizure. I know that you said you had had some other stuff going on besides seizure. I hope you have a better week. Do you find that being eptileptic you require a nap during the day? How old were you whent the epilepsy was discovered?

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

Submitted by 38benny on Mon, 2005-04-18 - 09:10

The epilepsy wasn't DISCOVERED until I was 21. That being said - I had mennigiccocal menningitis at 9 mos old. They think that I have been having them all my life - UH DUH.. I could have told them that... However, I was rather dramatic as a child and always did whatever I could to get what I wanted (I was #6 out of a house of 10 kids). So back then I can understand why people didn't "see" the seizures (they were petit mal). But at 21 when I came home from work I sat down on the porch telling some goofy story took off my walkman and the next thing "I REMEMBER" my mom is holding my walkman.  Apparently I threw it through the glass door not  once but twice not answering them when they asked what the hell I was doing. It was then decided I needed a dr.

Now - I almost always need a nap after having a seizure - either that OR caffeine to pick me up - depending on where I am.

And thank goodness the icky feelings are gone again! YIPPEE!

JoAnne

The epilepsy wasn't DISCOVERED until I was 21. That being said - I had mennigiccocal menningitis at 9 mos old. They think that I have been having them all my life - UH DUH.. I could have told them that... However, I was rather dramatic as a child and always did whatever I could to get what I wanted (I was #6 out of a house of 10 kids). So back then I can understand why people didn't "see" the seizures (they were petit mal). But at 21 when I came home from work I sat down on the porch telling some goofy story took off my walkman and the next thing "I REMEMBER" my mom is holding my walkman.  Apparently I threw it through the glass door not  once but twice not answering them when they asked what the hell I was doing. It was then decided I needed a dr.

Now - I almost always need a nap after having a seizure - either that OR caffeine to pick me up - depending on where I am.

And thank goodness the icky feelings are gone again! YIPPEE!

JoAnne

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

Submitted by Yakota on Mon, 2005-04-18 - 12:41
Hi Everybody. Linda here. I tried to get into the vns message board but am having technical difficulties? My user name and passwords seem to have gotten registared but I can' t log on? Does anyone know if the vns can effect a persons electromagnetic field? I mean can just having the battery pack , the battery inside of you (even if it is turned off,) increase a persons electromagnetic feild? True. You won't know if the vns will work until you have tried it. It works on one out of three people. What kind of sleep problems did you incure with the vns? I too had seizure as a child. At 44 I just found out from my mom that as a child I was always hitting my head, falling a lot more than my brother. My teachers always gave me "U'" (unsatisfactory,) in conduct. Their complaint was that I would just stare and be non responsive (not answer or pay attention.) Will no dah!!! I was having complex partial seizure. Unfortunately in the early 1960's educators and parents, were not aware of the "Small" seizure. To make a long story short I got punished a lot for not paying attention. During my teenage years the staring spells just went away. Then I was in a car wreck in 1983 and sustained a head injury. I had some trouble with speech and spelling afterward but showed no immediate signs of seizure. It was not until 1996 that the seizure noticibly returned. I had a fever of 104.50 for three days in 1996. 2 weeks later I had a small staring spell. Then I was miss diagnosed for seven years with various mental disorders instead of epilepsy (as most of you have alredy read!) At the end of 7 years of being treated with drugs that I didn't need that caused uncontrolable clonic tonic seizure, I received the vns. I have had the vns for over 2 years now. It's off. I am having trouble with seizure due to menopause. From a psychological standpoint, after what I lived through I am just glad to have my mind back fully functional and intact!!! Going through menopause is bringing on a new influx of seizure and has brought some kaos back into my life. Oh well. Poop happens!!! Anyone want to comment? Have a seizure free GREAT MONDAY everybody!!!bye. Linda

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