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Old 02-24-2005, 02:10 PM   #1
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VNS Machines

Wondering what people are thinking if these,, I am new to this.. Here is my story, I have a 19 year old son who started having seizures early last year after having an AVM removed..
He has gone the whole medication route,,
He is currently taking 500mg Depakote and 500 Mg of Keppera 3 pills / 3 times a day and still having break through seizures.. I am worried about the damage to his liver, if he keeps up with this dosage of medication,, I have read about the machine, but I am not sure what to do,, He is 19 years old, he can no longer drive and is having a very hard time downing this medication everyday,,
Does anyone know if these machines work and are you able to drive??

 
Old 02-24-2005, 04:32 PM   #2
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Re: VNS Machines

VNS works well for some, but sadly there is no guarantee until you try it you do not know if it will help your son. SOme neuros insist on ruling out surgery candidacy before trying VNS, too...

For 1/3 of patients it reduces seizures or may control them all, they may or may not be able to go down on meds.
1/3 of patients may not have fewer seizures but post ictal time may be reduced and seizures may be shorter. meds stay the same.
1/3 of patients it is not help and may actually increase siezures...

I know it is tough to play the med game. It is good to get a second opinion. Some neuros are better at finding control...hang in there!!Hope you find answers for him!!
I have two teens with e, one almost 14 one almost 16
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Old 02-25-2005, 08:43 AM   #3
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curse HB User
Re: VNS Machines

I too had an AVM removed & the seizures continued. I had been on dilantin & numerous other drugs were tried to no avail. Finally, after my neuro. found me in the hospital after having too many flops he passed me off to an Epi. He had been my Dr. for over 10 years & that was the best thing that man did for me. My Epi. wanted me to have the VNS about 3 years ago. I told him that unless he could gaurantee it would work that he best get it out of his head. He got me on Keppra & after more than 10 years w/o my drivers license I finally got it back almost a year ago. I take 3000mg a day.
Work on getting a referral & take your son to an Epi. They only deal w/ seizures, unlike Neuro's.

 
Old 03-04-2005, 11:24 AM   #4
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Unhappy Re: VNS Machines

Quote:
Originally Posted by curse
I too had an AVM removed & the seizures continued. I had been on dilantin & numerous other drugs were tried to no avail. Finally, after my neuro. found me in the hospital after having too many flops he passed me off to an Epi. He had been my Dr. for over 10 years & that was the best thing that man did for me. My Epi. wanted me to have the VNS about 3 years ago. I told him that unless he could gaurantee it would work that he best get it out of his head. He got me on Keppra & after more than 10 years w/o my drivers license I finally got it back almost a year ago. I take 3000mg a day.
Work on getting a referral & take your son to an Epi. They only deal w/ seizures, unlike Neuro's.
Thank you very much for this information, I don't mean to be ignorant, but what is EPI ? Is this someone who specializes in epileisy?? So even though you had the VNS machine installed you still have to take the medication???
If you don't mind me asking what do you do for Work?? My son is finding it very hard to find someone to employ him, he is an insurance risk,, He has no Aura, he has grand mals and remembers having one, besides the obvious clues that he just did.

 
Old 03-04-2005, 12:52 PM   #5
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Re: VNS Machines

I can answer some of these until the other poster fills in the rest. Epi is an epileptologist. They are neurologists who study longer and specialize in just epilepsy treatment, usually.

1/3 of patients with VNS have seizure control or fewer seizures and may be able to go off medication or decrease it. 1/3 of patients do not have as good control, but may see the duration of the seizure shorten. Sometimes the postictal time after is shorter, too. 1/3 of patients have no benefit from the device and may even see an increase in seizures.

It is one of those things that can not be tested ahead of time to know if it will help you. There are many many adjustments they can make to see if it can help.

I am so sorry he is having trouble finding work. Does your local area have any kind of rehabilitation services? Sometimes they can help you figure out where to work and even help in training.

hang in there. Keep asking questions!
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Old 03-04-2005, 01:00 PM   #6
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curse HB User
Re: VNS Machines

An Epileptologist has more schooling based mainly on epilepsy. They tend to be more "up tp date."
I did not have the VNS, because there is NO gaurantee that it will work or allow you to get off drugs.

 
Old 03-09-2005, 12:18 PM   #7
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Re: VNS Machines

Quote:
Originally Posted by prattc
Thank you very much for this information, I don't mean to be ignorant, but what is EPI ? Is this someone who specializes in epileisy?? So even though you had the VNS machine installed you still have to take the medication???
If you don't mind me asking what do you do for Work?? My son is finding it very hard to find someone to employ him, he is an insurance risk,, He has no Aura, he has grand mals and remembers having one, besides the obvious clues that he just did.
Sounds like a great plan seeing the EPI, he is getting so frustrated and hard to deal with, I know he is 19 and he wants to drive again and wants to work, but these things just are not happening at this time for him, He has been turned down for so many jobs in the last couple months it is just hard for him. I guess if they could just get the seizures controlled he may be employable.. I just pray an EPI has some new anwers.. Seems like his Neuro's just keep pushing the pills.

 
Old 04-20-2005, 07:37 AM   #8
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PINKY1 HB User
Re: VNS Machines

Hi,im A 36 Yr Old Female Who Had Uncontrolled Epilepsy.i Have The Vns Implant.you Never Said What Type Of Epilepsy Your Son Has,but I Was One Of The Beggining Guinea Pigs For The Vns.for Me It Unfortunatly Didnt Work.what Would You Like To Know?if I Can Help,i Will
Pinky1

 
Old 04-20-2005, 08:32 AM   #9
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Travis from MN HB UserTravis from MN HB UserTravis from MN HB User
Re: VNS Machines

If memory serves correct (it may not be runnin' at 100% currently, the last day was VERY LONG) I think Keppra is the drug that bypasses the Liver.

I COULD be confussing it with the kidneys, but I am pretty sure sure Kepp does not.

I think Depa is more of a liver concern than anything else. When I was on it I was VERY HIGH (around 2500/day)

I've been on 3000/day of Kepp for some time now. However I wasn't even in school yet when they started me on Teg at 1200/day... and I'm STILL on Teg!

I DO understand the driving issue very well. I was able to drive for about 3 years until my seizures deteriorated and I gave up trying to maintain my license. Never had one behind the wheel. One must examine what types of seizures they have, if they have a signifigant "warning" or not before the seizure, and so on.

Then the states legal policy on driving and epilepsy. In generalities it is 6 months to one year USUALLY. some are 3-6 months. All dependant on the state where you live. Epilepsy Foundation website is your best bet to find out your states current law on driving and epileptic seizures.

 
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