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VNS is workinig for me how about you?
Sun, 02/17/2008 - 11:28
Hi all,
My name is Nancy,
I have made a few comments to some posts, but never started a dsiscussion about my VNS on here so now I am. I am 34 yrs old and got mine implanted on Sept 20th of 2007. IT was turned on right out of the OR. I have a rare form of epilepsy. I have Frontal lobe epilepsy with a susndrome called Mixed Seizure Pattern, because I have both gen and Pc szs. I have 6 types of szs---Grand Mals, Petit Mals, Drop Attacks, Tonics, Simple and Complex Partial szs. I am medically intractable whcich ia how I wound up withthe VNS. My neuro gave me no other option, since I was not a candidate for brain surgery. Anyway, The VNS is ccontrolling my szs VERY well and he thinks Iwll be one of the lucky one in the 5% population that will go on to be sz-free on lowered meds with the VNS. Right now the settings are at 1.75 amps and it runs at a cycle of 30 seocnd ON adn 5 minutes OFF. Whichi meand I am being stiimulated for 30 seconds every 5 minutes. Before the VNS was put in I was having szs every day up to adn including anywhere from 3-10/day I wa smiserable adn it got be ridculous. Now I am having on average 4 days in a 3 week span with szs. The last log I turned into my neuro had 19 sz-free days and four days that had a sz adn one night with a sz. That was in a 3 week span as well. Now he is spreading my visits out to 4 weeks to see how I d othat long, but he was all booked out so it t urned into 5 weeks this time so we shall see. Right now it is looking pretty good on that log. I only had szs during my menses which was 2, and during the rain storms we had whichi was one. Then I setit off twive by accident, how stupid! I take 4 meds for me epilepsy. 3600 mgs of Neurontin, 300 mgs of Lamictal, 300 mgs of Topamax, and 2 mgs of Klonopin. Ativan if needed. I wear a magnet on my wr ist for the VNS. That way if I ahve an aura I can swipe it and abort the aura, or if I feel a sz coming on I can swipe i then ar during a sz I can swioe it if I am conscious. If ai om out cold somone else will haveto t ake my extra magnet and swipe the VNS for me. IT has shortended them considenrb;y and I can now stop them. IT is a GOd send for me! I have been belessed to have sucjc=h a GREAT neuro in many ways, not just for getting me on the list for the VNS. Which bt =y the way only took 3 weeks toget.
Nancy
Comments
Re: VNS is workinig for me how about you?
Submitted by banffgirl on Sat, 2008-03-01 - 02:24
hi nancy,
i have primary generalized seizures which is genetic, that i have had all my life. had abscence only as a child, had my first tonic clonic at 25, and was under control till almost 5 yrs ago. my neuro tried many meds on me before sending me to a epilepsy specialist. he then tried many combos and 4 veegs later nothing helped. i had up to 8-12 t/c s a week. brain was fried between that and constant seizure activity in my brain. he gave up, in oct 07 i went to a new epilepsy spec, and had a new veeg, with a good sampling of t/cs to diagnosis the genetic type i mentioned, i have full brain siezures. i was switched to lamictal 400mg/day from zonegran 800mg/day. i am on keppra 3000mg/day which after my new topamax gets up a little higher, we will start cutting keppra back, started topamax 2 weeks ago, and as of yesterday i am at 25mg 2x/day. it will go up every week, go to doc on monday for all drug schedule changes,dont know if he will adjust vns voltage yet. i also am on klonopin which was cut down to .5mg 3x/day from 2mg 3x/day. the vns has a 50/50 chance of working acording to my epilepsy specialist and the makers of the vns. i am not sure where bernard gets his info from but he always advertises his alternative ++++ on every blog he comments on. my vns was implanted on 2/7 and turned on 2/21 at 1.75 amps 30secs on 3 mins off. i got my vns after my epi spec consulted with the neurosurgeon on my case since i had other risk factors. luckily it was deemed safe and i got it 2 weeks later. though i went in on the monday for preop blood work and woke up in the er, found out i had 2 t/cs close together. so i spent 3 days before surgery having t/cs in the hospital and 2 days after to make sure i was ok. so much for outpatient surgery, though the pain was really extreme, though it could have been even worse since i had so many siezures before the surgery. i will always have constant seizure activity in my brain anyways but we are hoping for a drastic drop in siezures, new meds have helped a little. ativan is usually great to stop siezures from continuing when they are coming in multiples. i get really bad migraines with siezures and when siezure activity in my brain is increasing, i always know after that, i will have some really bad days. so i am very hopeful of the vns. the power of positive thinking, lol. mean time i will just roll with the punches as i get use to the topamax. as he turns up the voltage on the vns, it will be great if i will be able to cut back on meds a bit. i can imagine what my liver looks like. i do hope my vns works as well as yours!
God bless,
banffgirl
life is fragile, handle with prayer.
hi nancy,
i have primary generalized seizures which is genetic, that i have had all my life. had abscence only as a child, had my first tonic clonic at 25, and was under control till almost 5 yrs ago. my neuro tried many meds on me before sending me to a epilepsy specialist. he then tried many combos and 4 veegs later nothing helped. i had up to 8-12 t/c s a week. brain was fried between that and constant seizure activity in my brain. he gave up, in oct 07 i went to a new epilepsy spec, and had a new veeg, with a good sampling of t/cs to diagnosis the genetic type i mentioned, i have full brain siezures. i was switched to lamictal 400mg/day from zonegran 800mg/day. i am on keppra 3000mg/day which after my new topamax gets up a little higher, we will start cutting keppra back, started topamax 2 weeks ago, and as of yesterday i am at 25mg 2x/day. it will go up every week, go to doc on monday for all drug schedule changes,dont know if he will adjust vns voltage yet. i also am on klonopin which was cut down to .5mg 3x/day from 2mg 3x/day. the vns has a 50/50 chance of working acording to my epilepsy specialist and the makers of the vns. i am not sure where bernard gets his info from but he always advertises his alternative ++++ on every blog he comments on. my vns was implanted on 2/7 and turned on 2/21 at 1.75 amps 30secs on 3 mins off. i got my vns after my epi spec consulted with the neurosurgeon on my case since i had other risk factors. luckily it was deemed safe and i got it 2 weeks later. though i went in on the monday for preop blood work and woke up in the er, found out i had 2 t/cs close together. so i spent 3 days before surgery having t/cs in the hospital and 2 days after to make sure i was ok. so much for outpatient surgery, though the pain was really extreme, though it could have been even worse since i had so many siezures before the surgery. i will always have constant seizure activity in my brain anyways but we are hoping for a drastic drop in siezures, new meds have helped a little. ativan is usually great to stop siezures from continuing when they are coming in multiples. i get really bad migraines with siezures and when siezure activity in my brain is increasing, i always know after that, i will have some really bad days. so i am very hopeful of the vns. the power of positive thinking, lol. mean time i will just roll with the punches as i get use to the topamax. as he turns up the voltage on the vns, it will be great if i will be able to cut back on meds a bit. i can imagine what my liver looks like. i do hope my vns works as well as yours!
God bless,
banffgirl
life is fragile, handle with prayer.
Re: VNS is workinig for me how about you?
Submitted by bernardcwe on Sat, 2008-03-01 - 08:41
the vns has a 50/50 chance of working acording to my epilepsy specialist and the makers of the vns. i am not sure where bernard gets his info from but he always advertises his alternative ++++ on every blog he comments on.
Don't believe the hype. My info comes directly from Cyberonics (in written form where they have to be truthful):
... The long-term impact of VNS Therapy was assessed in an open-label, long-term study of 454 epilepsy patients using data from all 5 VNS Therapy controlled, clinical trials. The study compared the percentage of patients with seizure reductions of >= 50% over a 3-year period. The percentage of patients with >= 50% seizure reduction was 36.8 at 1 year, 43.2 at 2 years, and 42.7 at 3 years. ...
Long-term Seizure Control with VNS Therapy™
"advertises his alternative ++++"? Really? I'm just providing information. I have no vested interest in anything I'm talking about - it's strictly FYI. I'm sorry you appear to have a problem with people learning that there are options available to them.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Check out my chart of alternative epilepsy treatments.
the vns has a 50/50 chance of working acording to my epilepsy specialist and the makers of the vns. i am not sure where bernard gets his info from but he always advertises his alternative ++++ on every blog he comments on.
Don't believe the hype. My info comes directly from Cyberonics (in written form where they have to be truthful):
... The long-term impact of VNS Therapy was assessed in an open-label, long-term study of 454 epilepsy patients using data from all 5 VNS Therapy controlled, clinical trials. The study compared the percentage of patients with seizure reductions of >= 50% over a 3-year period. The percentage of patients with >= 50% seizure reduction was 36.8 at 1 year, 43.2 at 2 years, and 42.7 at 3 years. ...
Long-term Seizure Control with VNS Therapy™
"advertises his alternative ++++"? Really? I'm just providing information. I have no vested interest in anything I'm talking about - it's strictly FYI. I'm sorry you appear to have a problem with people learning that there are options available to them.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Check out my chart of alternative epilepsy treatments.
Re: VNS is workinig for me how about you?
Submitted by teachergreen on Sun, 2012-11-11 - 17:25
Pardon the double info.