 |
|
|
desert...
VNS has changed my life
- Login or register to post comments
- View/Print content
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
Recent Comments on this Discussion
Can I ask how successful most people have found it? I talked to the epilepsy nurse at my hospital about the posibility of one if I dont qualify for surgery, and she said "to be honest, we find that they just dont seem to work very well in adult patients with uncontrolled seizures in general" Is this what you guys have found, or completely the oppsite as in Nancy's case?
HI TAN,
I HAVE UNCONTROLED SEIZURES AND IT HAS MADE A BIG DEFERENCE. I STILL AM UNCONTROLED BUT I HAVE HAD 3 TCS SINCE SPRING INSTEAD OF 8-12 A WEEK LIKE I DID BEFORE. I STILL HAVE COMPLEX AND SIMPLE BUT THOSE ARE ALSO WAY DOWN FROM BEFORE AS WELL. HOPE THIS ANSWERS QUESTION.
I TYPE IN CAPS FOR THE VISUALY IMPAIRED
GOD BLESS,
BANFFGIRL
LIFE IS FRAGILE, HANDLE WITH PRAYER.
Theresa
I had the VNS on 4/14/08 and still have some trouble with it. Had to have the magnet turned down to lowest that it could be done. Everytime I try to talk my voice changes. It will either get real deep or it will go altogether. I know I have along way to go. I'm on no other meds. for my body rejects all meds. I'm given. That is why I have the VNS. I hope it works, for if it don't I will be without any kind of meds.
RASCTI,
MY NEURO STARTED ME ON THE LOWEST SETTING POSIBLE AND BROUGHT IT UP SLOWLY, I DID GO BACK IN AND HAVE IT TURNED DOWN ONCE WHEN HE RAISED IT UP A LITTLE BIT MORE THAN I COULD HANDLE. EVERY TIME IT WENT OFF AND I WAS TALKING OR TRIED TO TALK MY VOICE CRACKED OR DISAPPEARED. BUT NEXT TIME I WENT IN I WENT TO THAT LEVEL AND WAS OK AFTER A FEW DAYS. IT ALWAYS TAKES A FEW DAYS TO ADJUST, HAVING TO CLEAR YOUR THROAT, BEING HOARSE, OR YOUR VOICE CATCHES A BIT, BUT IT SHOULD CLEAR IN A FEW DAYS OR ITS BEEN TURNED UP A LITTLE MORE THAN YOU CAN HANDLE. ALSO A FRIEND OF MINE THATS HAD A VNS FOR 10 YEARS NOW, ALSO TOLD ME THAT WHEN YOU FIRST GET IT, YOU DO HAVE A HABIT OF TENSING THE NECK MUSCLES WITHOUT REALIZING YOU ARE DOING IT AND THAT MAKES IT WORSE. I FOUND THAT LAYING DOWN AND DOING DEEP BREATHING EXERCISES HELPS WITH THAT. I HOPE THAT HELPS YOU.
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.
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