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VNS is workinig for me how about you?

 

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?

That's awesome to hear. It's only around 40% of VNS patients that see greater than 50% reduction in seizures, so your results are much better than the median/norm. I'd encourage you to share your experience at the VNS Message Board.

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Check out my chart of alternative epilepsy treatments.

Re: VNS is workinig for me how about you?

In contrast, the E05 study had a statistically significant change only
in the mean percent change. The median percent change and the number of
patients who had greater than a 50 percent response was not
statistically significantly different between the high and the low
groups.

In addition, the E03
study stimulated patients every 90 minutes, as compared to the E05
study, where patients were stimulated every 180 minutes. The
sponsor this morning has discussed reasons why the E03 group potentially
was so low, and using the inclusion/exclusion criteria of the E05
study, did result in approximately a 15 percent reduction. However, if
you examine this data from a type of dose-response in terms of 90
minutes versus 180 minutes, we would still expect a lower value in the
E05 group relative to the E03 group.

In terms of the
open-label E04 study, the mean percent change was not significantly
different. It was only a 7 percent change, while the median percent
change and the greater than 50 percent responder rate was statistically
improved.

pg. 128
http://www.fda.gov/ohrms/dockets/AC/97/transcpt/3299t1.pdf

____________________________________________

DR.
COSTELLO: Good afternoon, Dr. Wilkinson and members of the panel. This
afternoon, I will be discussing issues regarding the safety and
effectiveness of the vagus nerve stimulation
device......................One-third of the patients had some type of an increase in seizures, with 17 percent having greater than a 25 percent increase.................This slide shows each of the studies and the percent seizure increase.
As you can see, in each of the studies, there were patients who had
greater than a 100 percent increase. In the E05 study, the range went up
to a 234 percent increase, while in the E04 study, it went even higher,
to a 680 percent maximum range.

pg. 125
http://www.fda.gov/ohrms/dockets/AC/97/transcpt/3299t1.pdf

___________________________________________

DR.
SNEAD: I think that's a reasonable suggestion. I would like to just say
a word of caution about including children at this date. First of all, I
am not convinced that we have data to do that. Secondly, what we have
heard about today are that the patients will
tell you when the stimulus is too high, because they are uncomfortable,
because of the voice change. Well, some children are not able to do
that, and some children are severely neurologically handicapped; some
children are too young, and you really need to be very careful about
extrapolating these data into that kind of population.

DR. WILKINSON: Any other comment, then, about this question?

DR.
SPYKER: I'm not sure I understood the suggestion. We already have it
back in the has not been shown effective. That's on page 12, and I
guess, well, so,the question stands: do we want to leave this in the
indication section. I don't propose that we remove it from back in
individualization of treatment?

DR. WILKINSON: It's already in that paragraph.

DR. SPYKER: Yes, sir. Thank you.

DR.
WILKINSON: Yes. So, leaving it in this paragraph would emphasize the
lack of data for the 12-year-old age cutoff, but not listing it as an
absolute contraindication would still leave the clinician some leeway,
so, perhaps leaving this in does make sense.

DR. DUFFELL: Could I make a comment on that?

DR. WILKINSON: One quick comment.

DR. DUFFELL: I
agree with what you're saying, but what we also need to remember is
that what the indications state also greatly influences what the payers
will pay for. So, the panel needs to consider that as well. We
will work with the FDA to constructively work out whatever the label
should be, but I wouldn't want you to neglect that in your
considerations as well.

DR. WILKINSON: And also, the future will come, and with the future may come data.

[Laughter.]

pg. 201
http://www.fda.gov/ohrms/dockets/AC/97/transcpt/3299t1.pdf

Dr. Wilkinson - Committee Chairman

Dr. Snead - Committee voting member

Dr. Spyker - FDA

Dr. Duffell - Cyberonics

_________________________________

The
next issue which I would like to address is the long-term data. As can
be seen in the extension phase of the XE5 study, here are the results of
the randomized, controlled trial and then followup at 4, 6 and 9 months
Both the mean percent change and the median percent change during the
extension phase showed approximately a 30 percent seizure reduction for
these patients. However, this data is confounded by the fact that the
patients were changing their medications during this period.

Similarly,
despite optimal antiepileptic drug therapy, only 20 percent of the
patients in the extension phase, using a last visit carried forward
analysis, had 50 percent or greater reduction in seizures. One-third of
the patients had some type of an increase in seizures, with 17 percent
having greater than a 25 percent increase.

pg. 130
http://www.fda.gov/ohrms/dockets/AC/97/transcpt/3299t1.pdf

Re: VNS is workinig for me how about you?

I believe the vns has help me w seizures. I have less now and feel safer. I also have less intense headaches.My family has used the magnet when I start to have a seizure and while the seizure happens. They agree the vns helps to bring me out of the seizure faster than when I wasn't using it.They ask "got your magnet" when I go out.

Also if I feel a seizure coming on- "de juv" I believe I've stop the seizure. Of course it may not work for everyone just like the same medication doesn't help everyone. 

I have to say the vns has changed my life and my family is a little less scared because they have a means of controlling a seizure. 

Many people including me I'm sure don't always belive in statistics. Maybe it's that class I took back in college. Information can be skud.

Re: VNS is workinig for me how about you?

Pardon the double info.

Re: VNS is workinig for me how about you?

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?

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?

I had the VNS implant in 2005 cause I was having Grand Mals several times a week and after I had the implant I had one more grand mal and I have not had one in 16 months I do still have the small seizures but things are definitly a lot better for me.

Re: VNS is workinig for me how about you?

I was controlled by meds until I had an ovarian cyst two years ago. Now I am on TegretolXR and was recently put on the generic for Neurontin. The Neurontin is the medicine that controlled me after I had me youngest child. It was new on the market then and I was controlled for 7 years so I was weaned off of it. I continued to be controlled on just Tegretol. When I started having the seizures again two years ago I requested the XR because I thought it would stay in my system better. I was only on two 400mg a day! I have been increased on the Tegretol and was eventually put back on the Nuerontin(generic) in January of this year. Although I still have breakthough seizures. When I have a seizure I have been having one then I will have another one later so not status. I am also using a natural progestrone cream because most of them were at the time on mensus. I have two today about 3 hours apart. But before mensus. I am 46 and am in early menopause. Have just a few symtoms sometimes. I have been having bad memory loss, I think it is because I am on so much medications. I forget words that I want to say. I am to the point of thinking about a VNS because I do have auras. Sometimes I will have just an aura and no seizure. I have also thought about a hysterectomy to rid myself of the problems with more of the hormone that triggers seizures ( starts with an e). I feel stupid when this happens and I know the word I want but can't think of the name of the word!! Please comment and let me know about how the VNS would be or anyone who has had a hysterectomy to help this situation.

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