Epilepsy Foundation

Helping Others Get Seizure Smart

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Helping Others Get Seizure Smart

Tell Us how you plan to help others get seizure smart. We'd love to hear ideas!

Website: http://www.getseizuresmart.org
Members: 290
Latest Activity: May 21

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Comment by Tammi Zavardino on May 3, 2014 at 1:05am

Lauren are you on a generic of Keppra? A lot of times people have trouble on the generics because they are not all the same and if its from a different company you may not be getting the same thing you were before that is what is happening with many meds and you have to be very careful and watch carefully I wish you the best.

Comment by Lauren Fulks on April 25, 2014 at 9:57am

I am a new member, and just joined this group.  I was reading some of the success stories, and wanted to share mine.  I had seizures starting at age 14, until age 35.  When I was 35, I underwent testing to see if I was a candidate for braining surgery, and I was.  The surgery was successful.  I have not had a grande mal seizure in almost 17 years, totally changed my life.

I am still on maintenance anti-convulsants, Keppra; I was reading some of the negative side effects some of you are experiencing, post surgery, from Lamictal.  I was on Lamictal for many years as well (and Tegretol, Depakote, Dilantin, Depakene); the side effects of Keppra are much less

Comment by Tammi Zavardino on February 18, 2014 at 11:21pm

Debbie the VNS surgery is a device that is hooked up to the vagus nerve in your neck and in your chest it is run by batteries and the settings can be changed by your doctor until they find the setting that will work to control your seizure activity. It has become very famous and works well with most that have it. And is usually something that is considered when medicines don't do the trick. I have found it to be very benificial although I still have to take a few medicines it was worth trying. Because I am now almost seizure free.

Comment by debbie john on February 18, 2014 at 10:08am

hi tammy. I guess I don't know what the vns surgery does. but good luck on the future

Comment by Tammi Zavardino on February 17, 2014 at 10:35pm

Taking awhile to recover from this surgery but doing really well as far as no seizure activity. The way I see it as long as there is no activity or just a few now and than I can deal with that. Sure it isn't fun taking meds but it could be worse. Hope everyone is doing well.

Comment by debbie john on February 15, 2014 at 12:37pm

well I haven't been on and wrote either but I get on and read all the updates from everyone. I have been seizure free 2 years now due to my brain surgery I had. I'm off 1 med completely and in another month I'll be off vimpat completely and then i'll still be on keppra which I have taken since forever. he'll probably cut me back a little on keppra too after some time but I know i'll always be taking meds the rest of my life.

Comment by Amanda Hitchcock on February 15, 2014 at 12:06am

Just in for you all on after me taking Onfi since last YRS seizures it decreased & just get in the fear of come on seizures. Also in so far the main of side effect I got that was double vision. Haven't got it once yet this YR.

Just to say for in on Valentine's Day hope you all are just in smart in thinking positive & loving yourselves in of what you have to in go threw or in how you deal with your Epilepsy.

Comment by Tammi Zavardino on February 14, 2014 at 11:34pm

Michelle Thanks and I hope everyone had a very Happy Valentines day it couldn't be as bad as mine was and hope I never go through what I did today ever again. Take care all!

Comment by Michelle Vargas on February 9, 2014 at 9:51pm

Hello Tammi!! Glad to hear that all went well.! Hope u have a great night:)

Comment by Tammi Zavardino on February 9, 2014 at 3:42pm

Hello all I haven't been on here for a while because I have been recovering from the surgery but thankfully no seizure activity so very happy about that but sure glad I don't have to have this surgery again for 5 or 6 yrs and hope you all are doing well.

 

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