Epilepsy Support Group

Hi I am new to this group. How is everyone

I just had a VNS put in about 3 weeks ago and wondering if anyone out there has one also

Hi Necie,

My name is sonia, welcome to the epilepsy support group.

I have been on most of the medicines for the type of seizures I have (partial complex), most of them were unsuccessful, but then my neurologist tried me on an experimental drug (Sabril) and it stopped my seizures, I was 26 and finally able to drive & work, but then after the 4 year drug study the FDA decided not to approve sabril, so my neurologist gave me the remaining sabril that she had to keep me seizure free longer, I was seizure free for 7 years (IT WAS GREAT), but then my gynecologist put me on birth control 1 month before I got married & I started having seizures again, (I have thought for a long time that my seizures are hormonally related). I have been through 2 video EEGs where I go in the hospital they take me off of my seizure medicines to cause seizures and they record the seizures both with video and with EEG to find out if I am a candidate for brain surgery, I was in there 8 days the first time and 5 the second, I didn't have any seizures either time, my husband is wanting me to go in a third time where they will drill holes and implant the sensors to get a better reading. I have also considered the VNS so please let me know your experience with it and how the VNS is working.

Sonia

Hi Sonia

Thanks for writing me back, and welcoming me.Sounds like you have had a hard time. Let me tell you a little about myself.... I had my first seizure it will be 5 years this Aug. Just out of the blue while sitting on my couch. No reason that my Dr. can find.I have done all the tests you have had and I never had a seizure either. I had to have an anurism removed from my brain 2 years ago. They wanted to do all the test again to see about having the surgery. But with the plate in my head they werent sure if once they got in if they could do it. I have been on almost on the pills for seizures.Right now I am on the highest dose of trileptal and lamectal that they alow.My seizures are still not controlled. So I had a VNS put in.I have had 2 seizures since then.I used the magnet they give you the first time and it made my seizure not as long, and I wasnt as tired and confused as usual. I had an aura this morning and used my magnet and it did the same thing as the first time.I guess its a start. The Dr. said that it will take a little time to get everything all adjusted. I know it will take time, I guess time is all I have now. I just started working again after 2 years,and I only drive to work.I dont really like to go out to places, I would rather be safe at home. Do you ever feel like that?

I hope to hear from you soon..

Necie

Hi Necie,

Yes I do feel that way, I don't drive at all now either my husband or mom take me to work and pick me up, I really miss driving I think one reason my husband is pushing for me to have this third video EEG is because he wants me to be able to drive. I don't like to bother people so I don't hardly ever go anywhere other that at work. I was in the eleventh grade when I started having seizures, I was telling my mom that something was going on I didn't know what (she didn't think much of it) until I told her that one day I was in class and the teacher was at the front of the class and the next thing I knew he was at the back of the class, my mom took me to the doctor and they found out I have epilepsy. I wish I would have had that video EEG done back when I was having over 20 seizures a month, I would like to know if I am a candidate for surgery, if not I would just go ahead and get the VNS. Right now I am taking Dilantin and Lamictal. Where do you work?

Sonia

Hello again

Hopefully you will be able to figure something out soon.If you are a candidate that would be great. Im not sure whats going to happen with my VNS. It seems to be doing what its susposse to do.I just hope that after awhile that I will beable to get off some of my meds.Besides my epilepsy meds I also take 3 different blood pressure meds.It seems like every other hour I am taking something.I work at The Breakfast Club in Co. its a resturant. I use to be a full time server then I got sick and didnt work. I just went back a couple of years ago and work 2 days a week and now i greet people. Not what I want to do, but its better than nothing. My husband works so that works out.So where do you work? I am 41 how old are you?

I will close for now

Necie

Necie,

Besides my medicine for epilepsy I am also taking Lexapro for Anxiety. I work at EOC Senior Adult Day Center, I am a Program Assistant & I am a Certified Medication Aide/Certified Nurses Aide, it is a great alternative to a nursing home this way the participants can come to the ADC during the day and be at home with their families at night, we have some young adults but most of them are elderly. My husbnand is a welder and he has a shop in our back yard. I am 39 & I have 4 year old (boy/girl) twins.

Bye for now

Sonia

I have had a vns for about 8 yrs. now. It has helped me a great deal. Still not seizure free. I did go 2 yrs. without having one though. With only having it such a short time have they got it set at the right frequency and strength yet? After they got mine set I can't even tell now when it goes off. Sometimes my magnet is the worst thing about it. I keep mine in a pocket most of the time and when I'm out in publec the next thing I know my magnet attaches to something, like my grocery cart or something like that! One time while I was in the hospital I left it in my room. When I called the hospital housekeeping didn't know what it was and threw it away! Keep me informed on how things go with the stimulator. Glad I seen you're letter. Hopefully we will become friends. Good Luck and God Bless. Gidget

Hi Gidget..

I just had my VNS put in a month ago. We are still working to get my set.The hardest thing for me is as it goes off I cant eat, i feel like i am going to choke. Also when mine goes off my voice almost goes. I hate it when i am talking to someone and it goes off and i lose my voice. They look at me like i am an alien. Then they ask what happened, what do you say?

Hi Necie! I've had a VNS for about 8 yrs. Good luck with yours. Take care and God Bless. Gidget