Epilepsy - One Condition

Im ready to talk

Category:

People & Blogs

Tags:

• epilepsy
• vns
• therapy
• vegas
• nerve
• stimulation
• stimulator
• seizures
• grandmal
• petimal

[secretagentmandy]

Thank you so much for posting this. I got the VNS about as month a half ago. Still getting used to it and waiting for it to work. It's so great you posted your story :D

[madkittyjoey70]

i also have it...was diagnosed with complex partial epilepsy. and by coincidence, a guy named alex called me a bitch and told me i had 2 get counseling...even told me i was a fucking crybaby! what a goddamned prick!!!

[iandjones942]

Hey Alex, thanks so much for posting this-I've just read up on VNS therapy,& am almost definitely going to go through with the procedure.I was a little bit nervous about what it might do to my voice, but hearing what it does to yours seems pretty mild. I could live with that. (Plus, I hear it can go away for some people.) I've never been diagnosed with the big "e", but I have "seizure disorder"-and I'm really tired of taking six and a half pills a day to control that. Hoping that VNS will help.

[thecamboy]

Hi Alex my name is Colm im from Ireland.

Im 27 and im going to get the vns implant can i ask has it improved your life and has it limited your seizures thanks man

[ANTONY050772]

Alex, my wife Lisa has had the VNS implant since 2006, we are still ramping up the stimulation very slowly.Lisa's voice also changes during stimulation but this has got better over time.Lisa epilepsy is very severe though with frequent seizure activity every 3-4 days.We live in England (uk) and attend hospital in London.Lisa has tired all AED's available and had limited surgery back in 1993 which didn't help.Like you we remain positive & try not to let epilepsy get us down.best wishes Paul

[Zolwena]

Hey Alex,

My daughter has the VNS and is on her 2nd one, she has had this one about a year now. Her seizures went from 80-120 each day to less than 5 a day and some days none at all. My daughter cannot and has never been able to talk, but I know many others who have the VNS and they have been taught to tape the magnet over the VNS device if they want to disable it temporarily for public speaking or singing in choir etc... talk to your doc about that, it does not have to be on all the time.

[ahaili]

Hey man, you're really brave to say that. I hope you continue to be able to handle everything. Thank you for posting this!

[bobfolgerjr]

Alex,

Keep your positive attitude. My name is Bob, I'm 39 and I to have a VNS Stimulator. I had extreme problems with my voice for the first several years. I've had my VNS for 11 years now, I was one of the first in the US. I actually lost my voice. You sound good pal.

The most important thing with epilepsy is to keep your positive attitude. I was pushed in high school 27 years ago and thats how my seizures started. I'm undergoing Temporal Lobe Surgery in May 2008 here in PA.

[CagedSongBird]

Now I remember you! :)

Merry Christmas!

Sending love & smiles from afar!

(((Hugs))) to you & yours...

Paula

[MySeizures]

Good luck with your medication but after 10 years of medications, I don't trust the prescriptions drugs any more, therefore, I'm hoping and praying for brain surgery.

Wishing you all the best.