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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 banffgirl on Thu, 2008-07-03 - 23:07
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.
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.
Re: VNS has changed my life
Submitted by rasctiseslkl on Thu, 2008-07-03 - 22:35
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.
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.