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VNS has changed my life
Thu, 07/03/2008 - 14:51
HI all,
I have been on here with a story about my VNS about 3 or 4 months ago. But now it gets even better. I am at 2.25 amps. IT is running on a cycle of 5 minutes OFF and 30 seconds ON. That may soon change to 3 minutes off and 30 seconds ON to give my brain more stimulation.
Anyway, on Jne 9th I turned in my sz log to him and it was a 2 month span between my appt and it had only 8 szs and 55 sz-free days on it. That prompted him to lower my Neurontin 300 mgs so I am not maxed out on it any more ao instead of 3600 mgs I am now on 3300 mgs of it and he has set up my Lamictal so he can reduce when I go in there on the 25th of this month.
SInce the 10 th of June I have only had 5 szs. I have multiple types, and it has obliterated my GMs, Absences, Atonics, and simple Partials. All I have to deal with are the Complex Partial szs.
I have only had the VNS for just over 9 months, and am way ahead of where I should be at this time.
He said there is a possibility that I could become sz-free by the end of the year.
What a Christmas present that would be. After having szs since I was a little kid that were undiagnosed. I have been diagnosed for 6 years. Frontal Lobe Epilepsy in the left lobe. The otehrs were all generalized.
Nancy
Comments
Re: VNS has changed my life
Submitted by desert_rose73 on Tue, 2008-07-29 - 18:17
Banffgirl.
My neuro mKes me keep a log, but afterI have a sz I ask my mom or husband or whoever last saw it for a descrtion so I can write in a note book later to betypes on my computer to be handed into him at the next appt.
My amps are up at 2.25 adn he is done turning it up. Becuaseui I am responding to it so well they decidedNOT to change thet cycle of the timing on it and left it at 5 minutes OFF and 30 seconds ON.
He felt it would be to much for me because I already have a tough enough time eating and talking right now that he didn't want to make it worse for me. I can't swollow food in my mouth if I am caught with it there whenthe stimulator kicks on, and my voice gets REALLY hoarse as well when it kicks on,so he didn't change it, he didn' think it would be fair to me to dot hat. But I am way aheead of where I should be right now. I shoud be where I am at now in 18 mths to 2 years adn I have only had it for 10 months.
HE is slowly gettingrid of the neurontin that I have been on for 6 years. Every 2 months he takes away another 300 mgs.
then I will be left with just the Lamictal, Topomax and Klonopin.
I wear a magnet on my wrist and just swipe it across my VNS when I feel adn aura or a sz adn stop all of it from happening.
I have become as of this past Monday a VNS Ambassador for Cyberonics, Inc.
I will be volunteering for them.
It is a 5 year term.
Nancy
Banffgirl.
My neuro mKes me keep a log, but afterI have a sz I ask my mom or husband or whoever last saw it for a descrtion so I can write in a note book later to betypes on my computer to be handed into him at the next appt.
My amps are up at 2.25 adn he is done turning it up. Becuaseui I am responding to it so well they decidedNOT to change thet cycle of the timing on it and left it at 5 minutes OFF and 30 seconds ON.
He felt it would be to much for me because I already have a tough enough time eating and talking right now that he didn't want to make it worse for me. I can't swollow food in my mouth if I am caught with it there whenthe stimulator kicks on, and my voice gets REALLY hoarse as well when it kicks on,so he didn't change it, he didn' think it would be fair to me to dot hat. But I am way aheead of where I should be right now. I shoud be where I am at now in 18 mths to 2 years adn I have only had it for 10 months.
HE is slowly gettingrid of the neurontin that I have been on for 6 years. Every 2 months he takes away another 300 mgs.
then I will be left with just the Lamictal, Topomax and Klonopin.
I wear a magnet on my wrist and just swipe it across my VNS when I feel adn aura or a sz adn stop all of it from happening.
I have become as of this past Monday a VNS Ambassador for Cyberonics, Inc.
I will be volunteering for them.
It is a 5 year term.
Nancy
Re: VNS has changed my life
Submitted by ANewby on Sun, 2008-09-28 - 14:47
- I've got my 1st VNS in 2001 and had to have it replace in March of 2008 due to a car accident. The lead wirers became kinked and it was time for the battery to be- placed anyway. I cant say I *love* my VNS but it has slowed down my sz's some. Still taking 3 types of med's. The hardest part I found getting used to was the madnet. When to use it! My VNS goes off every 3 mins for 30 secs. It affects my voice. Lucky I'm from the south and have a high pitch voice so I dont sound like a baratone.......lol. Its hard for poeple to understand me on the phone so I use the magnet to shut down it off but it hurts when you turn it back on.Looking back I can't say that I would get the VNS if I had a choice,even after the accident I had my doubts. I think as with all medical divices it works for some and not others. Which is why I would never not recommend it to someone. I believe everyone should have the right to make up their own mind on the pro's and con's on every treatment avaible(sp) to them. What works for one might not work for you. I'm just hard-headed and don't give up to easily........Cyberonics, Inc.says they have put in a smaller and better model into my chest so I'm willing to give it a chance!
- Hope to talk to you soon
- Anne
- PS congrates Nancy for becoming a VNS Ambassador for Cyberonics
- I've got my 1st VNS in 2001 and had to have it replace in March of 2008 due to a car accident. The lead wirers became kinked and it was time for the battery to be- placed anyway. I cant say I *love* my VNS but it has slowed down my sz's some. Still taking 3 types of med's. The hardest part I found getting used to was the madnet. When to use it! My VNS goes off every 3 mins for 30 secs. It affects my voice. Lucky I'm from the south and have a high pitch voice so I dont sound like a baratone.......lol. Its hard for poeple to understand me on the phone so I use the magnet to shut down it off but it hurts when you turn it back on.Looking back I can't say that I would get the VNS if I had a choice,even after the accident I had my doubts. I think as with all medical divices it works for some and not others. Which is why I would never not recommend it to someone. I believe everyone should have the right to make up their own mind on the pro's and con's on every treatment avaible(sp) to them. What works for one might not work for you. I'm just hard-headed and don't give up to easily........Cyberonics, Inc.says they have put in a smaller and better model into my chest so I'm willing to give it a chance!
- Hope to talk to you soon
- Anne
- PS congrates Nancy for becoming a VNS Ambassador for Cyberonics
Re: VNS has changed my life
Submitted by banffgirl on Thu, 2008-07-03 - 19:37
NANCY,
THAT IS JUST WONDERFUL NEWS!!! AND TO HAVE YOUR MEDS CUT BACK SOME TOO IS GREAT. I HOPE YOU GET YOUR CHRISTMAS WISH AND ARE SIEZURE FREE BY CHRISTMAS TIME!! YOU GIVE ME MORE HOPE ON GETTING MY SMALLER ONES UNDER CONTROL TOO. I GOT MY VNS RIGHT AT 5 MONTHS AGO AND I HAVE NOW STOPPED HAVING TONIC CLONIC SEIZURES. BUT THE COMPLEX, SIMPLES AND ABSCENCE ARE STILL WITH ME FULL FORCE. I GO BACK TO THE NEURO ON MON THE 7TH, TO HAVE IT TURNED UP AGAIN. I AM ON TOPAMAX AND LAMICTAL. MY MEMORY SUCKS SO I DONT REMEMBER WHAT AMPS I AM ON, BUT I AM ON THE 3MIN 30 SEC CYLCLE. MY ARE ALL OVER THE BRAIN SEIZURES. I HAVENT EVER BEEN ABLE TO REMEMBER TO KEEP A SEIZURE LOG I ALWAYS FORGET TO WRITE THINGS DOWN. THAT IS REALLY GREAT THAT YOU KNOW EXACTLY WHEN YOU HAD YOUR LAST BIGGGGGGG ONE!!! AND YOU KNOW EXACTLY THE NUMBER OF SEIZURE FREE DAYS. CONTINUED GOOD LUCK WITH YOUR VNS!!!!
I TYPE IN CAPS FOR THE VISUALY IMPAIRED
GOD BLESS,
BANFFGIRL
LIFE IS FRAGILE, HANDLE WITH CARE.
NANCY,
THAT IS JUST WONDERFUL NEWS!!! AND TO HAVE YOUR MEDS CUT BACK SOME TOO IS GREAT. I HOPE YOU GET YOUR CHRISTMAS WISH AND ARE SIEZURE FREE BY CHRISTMAS TIME!! YOU GIVE ME MORE HOPE ON GETTING MY SMALLER ONES UNDER CONTROL TOO. I GOT MY VNS RIGHT AT 5 MONTHS AGO AND I HAVE NOW STOPPED HAVING TONIC CLONIC SEIZURES. BUT THE COMPLEX, SIMPLES AND ABSCENCE ARE STILL WITH ME FULL FORCE. I GO BACK TO THE NEURO ON MON THE 7TH, TO HAVE IT TURNED UP AGAIN. I AM ON TOPAMAX AND LAMICTAL. MY MEMORY SUCKS SO I DONT REMEMBER WHAT AMPS I AM ON, BUT I AM ON THE 3MIN 30 SEC CYLCLE. MY ARE ALL OVER THE BRAIN SEIZURES. I HAVENT EVER BEEN ABLE TO REMEMBER TO KEEP A SEIZURE LOG I ALWAYS FORGET TO WRITE THINGS DOWN. THAT IS REALLY GREAT THAT YOU KNOW EXACTLY WHEN YOU HAD YOUR LAST BIGGGGGGG ONE!!! AND YOU KNOW EXACTLY THE NUMBER OF SEIZURE FREE DAYS. CONTINUED GOOD LUCK WITH YOUR VNS!!!!
I TYPE IN CAPS FOR THE VISUALY IMPAIRED
GOD BLESS,
BANFFGIRL
LIFE IS FRAGILE, HANDLE WITH CARE.