Hi Nichole,

Are you covered at all under your husband's insurane as a dependent?

I know what you are going through, as I had seizures most of my life,
until 1991, when I underwent successful surgery for the removal of
scar tissue which had been the focal point of my seizures as a
result of a high fever.  I remember the insurance angle, though with
one catch.  Because my seizures were pre-determined before I was 18, I
could be covered under my father's insurance which picked up the
unpaid balance left by my insurance while I was working, or covered my
100% when I wasn't working.

Have you contacted the Epilepsy Foundation in Landover, MD for
information that they may be able to provide you with?

Yes, many go through a period of denial and have a mental block about
not taking their meds.  What meds are you on?  Maybe they are having
and adverse reaction on your system.  How long have you gone without a
seizure in the past.

Feel free to e-mail me off the group at: a.pinsley@... if
there is anything you wish to discuss without airing it for the entire
group to read.

Alison Pinsley



--- In epilepsy-testimonials@yahoogroups.com, "nichole (hanger)"
<stanjhc@...> wrote:
>
> Hi everyone! Happy to find a forum.
> I am a 28 female w/ seizures for 12 yrs. Dont know why.
> For some reason I have a mental block about taking my meds. Dr says
Im
> suffering from denial...for 12 years? Ever heard such a thing.
> had a grad mal 2 weeks ago, fell, and I think I broke my chin amoung
> other injuries. Husband found me in a pool of blood.  My cobra
> insurance resently ran out, and I cant get another individual
> insurance policy unless I have been seziure free for 3yrs. so Im
> afraid to get checked out. Any wisdom??
>

Hi Carole,

Yes, seizures are often caused by head injuries of one type or
another, but there are some which can be caused by scarring formed
after a high fever.

How is your grandson doing these days?

Alison

--- In epilepsy-testimonials@yahoogroups.com, "CAROLE"
<carole_horsman@...> wrote:
>
> Hi
> I cant tell you about surgery connection or suitable meds etc,
only that some anti epileptic drugs can cause seizures of themselves
from what Ive read. My grandson is 2 and has been having seizures
since age 10 months. He goes blue/purple in lips and tinge round the
eyes, he seems to shake when he is coming out of the attacks but has
sometimes shaken before them,  and also now appears to have
absences.  We may also hear or see  teeth "chattering" and/or  him
shivering. He may also make a repetetive clenching and unclenching
of his hands. He will also sleep afterwards sometimes but appear
normal on others and just get on with fun things again.
>
> According to what we were told, the body goes rigid, including
lungs so breathing is extremely restricted, causes a sudden extreme
drop in oxygen levels which causes the color, but that goes back to
normal as soon as he is out of the fit and breathing again. The deep
breath is the body`s way of raising oxygen back to normal in the
body,  The noise is normal,  and can also have a gurgling or
rattling type sound, it does NOT mean he is awake or trying to say
something etc, its to do with the throat being restricted and air
passing through very tight throat/chest.  I cant comment on
jabbering as our grandson doesnt really talk yet, he has autism so
is delayed, but to me, it sounds as if your son is just getting back
to what he normally does, is he a bit of a jabberer normally? Most
kids that age are because theyre learning speech so make sounds
frequently perfectly normally.
>
> How can the cause of all epilepsy be ascaris when seizures are
onset after a head injury or some other physical thing like that?
Please dont put your child through any special alternative
treatments without knowing everything possible about them and their
safety, and wether they would mix with medication etc. If ascaris
were the cause of all, dont you think the medical world would stop
countless children and adults from suffering the fits?  Please be
very careful with anythinh you consider trying.
>
> Im sorry your son and you  have to go through this, I wish I could
say something more, but like you, we are all waiting to learn more
about our little one.
>
> Carole
>
>
>
>
>   ----- Original Message -----
>   From: Andy Hussong
>   To: epilepsy-testimonials@yahoogroups.com
>   Sent: Tuesday, September 07, 2004 9:49 AM
>   Subject: [epilepsy-testimonials] 15 month-old son has
seizures...help!
>
>
>   Hello,
>
>   Please, will someone please help my son?
>
>   My son is 15 months old. He started having seizures
>   in June 2004, about one month after having tubes put
>   in his ears. Up until that time, the only health problems
>   he had were chronic ear infections/high fever.
>
>   My #1 question is whether the surgery to put tubes in
>   his ears could have anything to do with his seizures.
>   Someone told us that when he was a kid, he had seizures
>   and that it was because of scar tissue caused when he
>   had tubes put in his ears.
>
>   Anyway, here's why I'm so concerned...
>
>   Back in June, he started having multiple seizures per
>   day. I'm not sure what you would call them, but I will
>   describe them for you.
>
>   I know they're not Grand Mal or Febrile (fever induced).
>   They usually last about 25-40 seconds, and consist of him
>   turning his head to the left, getting a blank stare, making
>   a grunting sound, getting red in the face, and hands/arms
>   trembling. At the end of the seizures, he jabbers for about
>   5-10 seconds (even when previously sleeping), takes a deep
>   breath, and then he's usually back to normal, at least
>   apparently so. He was having up to 40 or so seizures per
>   day, and is currently around 5-10 per day, but seem to be
>   intensifying.
>
>   His first medication was Phenobarbitol, and because his
>   seizures seemed to increase, they added Topamax to it.
>   Although his seizures decreased considerably (from 40/day
>   to about 3/day), we noticed he was consistently breathing
>   heavy. Although the neurologist had never heard of this
>   side effect with Topamax, after about an hour of research
>   on the Internet, I found a warning issued to doctors back
>   in Jan 2004 about the rare side effect of Topamax causing
>   some sort of acidosis, which in turn, includes rapid breathing.
>
>   Anyway, after making sure that it wasn't bronchitis
>   causing his rapid breathing, after about 2 weeks, the
>   doctors concluded that he did need to come off the
>   Topamax because of the rapid breathing.
>
>   Now, he has been taking Trileptal (ol?), while being
>   weaned off the Topamax, and still taking the Phenobarbitol.
>   His seizures used to occur only when tired or when sleeping,
>   but now they occur sporadically throughout the day.
>
>   Also, they seem to be intensifying, as mentioned previously.
>
>   I read on the Net that Dr. Clark helped a family whose child
>   had a severe form of epilepsy to totally clear up the seizures.
>   She told them, supposedly, that "all seizures are caused by
>   Ascaris".
>
>   Now I need your help.
>
>   You know my son's current situation as of 9/6/04, and we
>   are desperate for some guidance so that we can end my son's
>   seizures.
>
>   Please feel free to contact me ANYTIME either by phone or
>   email. My contact info is below.
>
>   I appreciate everyone's time, and may God bless!
>
>   Take care,
>
>   Andy Hussong
>   765-552-6949 (home)
>   765-278-8763 (cell)
>   888-453-0844 (fax)
>   andy@...
>
>
>
>
>
>   Community email addresses:
>     Post message: epilepsy-testimonials@onelist.com
>     Subscribe:    epilepsy-testimonials-subscribe@onelist.com
>     Unsubscribe:  epilepsy-testimonials-unsubscribe@onelist.com
>     List owner:   epilepsy-testimonials-owner@onelist.com
>
>   Shortcut URL to this page:
>     http://www.onelist.com/community/epilepsy-testimonials
>
>
>         Yahoo! Groups Sponsor
>               ADVERTISEMENT
>
>
>
>
>
> -------------------------------------------------------------------
-----------
>   Yahoo! Groups Links
>
>     a.. To visit your group on the web, go to:
>     http://groups.yahoo.com/group/epilepsy-testimonials/
>
>     b.. To unsubscribe from this group, send an email to:
>     epilepsy-testimonials-unsubscribe@yahoogroups.com
>
>     c.. Your use of Yahoo! Groups is subject to the Yahoo! Terms
of Service.
>

I am also sorry that you are having this problem with your son's
school and the nurse that is there.  I am now seizure free, after
successful surgery in 1991, but went through school with seizures,
in the 1960's and 1970's, when even less was known about seizures
than is now.  Your story sounds like something that would have
happened at that time when no one knew anything about anything.

Have you thought of home schooling for your son?  It sounds like the
stress of being in an environment which is not understanding his
situation may be another cause for his increased seizures.

Not for nothing, but even though I grew up with seizures, I never
heard the term "post ictle".  Would you enlighten those of us who do
not know what the term means?

Good luck and my prayers are with you.

Alison Pinsley

--- In epilepsy-testimonials@yahoogroups.com, "Mike Mchugh"
<mcpitza@...> wrote:
>
> Sorry you are having to battle this Dee...
>
> I had similar problems in the past. What has been helpful for me
is to contact the Epilepsy Foundation and have them come out to the
school. They will have a trained nurse come and educate all of the
staff for an in-service training free of charge or they will talk
one on one with who ever is created the problem for your son.
>
> I hope this will help you as it helped us.
>
> Michael
>   ----- Original Message -----
>   From: tequilarose413
>   To: epilepsy-testimonials@yahoogroups.com
>   Sent: Wednesday, February 01, 2006 6:30 AM
>   Subject: [epilepsy-testimonials] Dear Listmates..Sorry..I just
NEED TO VENT
>
>
>   Good Morning Listmates,
>
>   I am writing today because I REALLY NEED TO VENT!!
>
>   Kyle has been attending the same school for he passed 8 yrs.
NEVER
>   ONCE DID THEY EVER HAVE TO send him off to the hospital for
seizure
>   activity.
>   WELL..this past year..since they have gotten a new nursing
staff,
>   this woman calls for EVERY FREAKING SEIZURE!!
>   So..I either have to go to the school..every other day to pick
him
>   from there...OR I have to go every month or so to the Hospital
to
>   pick him up from the EMERGENCY ROOM!
>
>   The house Doctor EVEN SAID, RIGHT IN FRONT OF THE School Social
>   Worker, that it is REALLY UNNECESSARY FOR THIS CHILD TO GO THRU
THIS
>   AS OFTEN AS HE HAS.
>   He has a seizure disorder...He's had seizures his whole little
12 yrs
>   of life..
>   He has about a dozen a day!!
>   Some days NOT as many...some days NOT AT ALL..but on the average
>   about 12..for sake of arguement.
>
>   I have told the nurse, that she is supposed to wait 15 minutes
before
>   administering the Diastat...BUT SHE IS SO GUNG HO..and ready to
stick
>   him with it!
>   AND SHE has also called my son's neuro, and "suggested" that she
>   increase the dosage of Diastat, and she wants the order changed
to 5
>   minutes within the start of his seizure...WHICH...She has been
told a
>   million times by the doctors..Neuro & Ped, NOT TO MENTION
MYSELF!!
>   That Kyles seizures are CLUSTERS..NOT ONE PROLONGED SEIZURE!!
>   the doctors didn't even want to prescribe the diastat..but did
so ,
>   to pacify the school. BUT NOW THE NURSE IS STEPPED OVER HER
>   BOUNDRIES.
>   She has been pushing me into putting him on medication!
>   Which he has not been on meds in about 5 yrs!
>   SO...I don't care who she is, or who she thinks she is or what
she
>   thinks she knows about seizures...but I am his mother...and I
SAY NO
>   MEDS!!
>   she doesn't have a clue about seizures!
>   NOT A CLUE!!
>   Because she was not aware of CLUSTERS, and she is timing them
from
>   the beginning of the seizure and WHAT SHE THINKS IS PART OF THE
>   SEIZURE IS POST ICTLE!
>   She DIDN'T KNOW WHAT POST ICTLE WAS!!
>   WHAT KIND OF NURSE IS SHE??
>   I could do a MUCH BETTER JOB THAN HER, and I'm not SCHOOLED FOR
IT!
>   I've got ON THE JOB EXPERIENCE!I could be a freakin' nurse!
>   Each of "US" Parents could be Doctors!!
>   With all that we have gone thru with our children
>   Im digging through the old posts...I'm looking for any that
contain
>   info on School Matters, and problems that others have had with
their
>   schools & School Districts.
>   I have not been happy with this school for QUITE A WHILE...and
SO I
>   GUESS I will have to look for another school!
>   I TOTALLY understand, that the school has to do what they have
to
>   do..
>   there are rules and regulations that they need to follow...
>   BUT when they have Kyle's RECORDS...they have his seizure
history.
>   AND IT CLEARLY STATES, that his seizures along with the post
ictle
>   state..lasts for about 15-20!!
>   NOT THE SEIZURE ALONE...but with the post ictle state as well!
>   That woman should really go back to school..
>   Anyway...IF ANYONE Has gone through anything similiar...I'd
greatly
>   appreciate any info you could send my way..
>
>   Have a blessed day
>   and thank you for listening...
>   I hate spilling my guts..I am quite angry..and just really
needed a
>   shoulder.
>   WHICH I KNOW I CAN ALWAYS come here for one. OR SEVERAL..lol
>
>   love
>   hugs
>   &
>   blessings
>   Dee
>
>
>
>
>
>
>   Community email addresses:
>     Post message: epilepsy-testimonials@onelist.com
>     Subscribe:    epilepsy-testimonials-subscribe@onelist.com
>     Unsubscribe:  epilepsy-testimonials-unsubscribe@onelist.com
>     List owner:   epilepsy-testimonials-owner@onelist.com
>
>   Shortcut URL to this page:
>     http://www.onelist.com/community/epilepsy-testimonials
>
>
>
> -------------------------------------------------------------------
-----------
>   YAHOO! GROUPS LINKS
>
>     a..  Visit your group "epilepsy-testimonials" on the web.
>
>     b..  To unsubscribe from this group, send an email to:
>      epilepsy-testimonials-unsubscribe@yahoogroups.com
>
>     c..  Your use of Yahoo! Groups is subject to the Yahoo! Terms
of Service.
>
>
> -------------------------------------------------------------------
-----------
>

----- Original Message -----

From: tequilarose413

To: epilepsy-testimonials@yahoogroups.com

Sent: Wednesday, February 01, 2006 6:30 AM

Subject: [epilepsy-testimonials] Dear Listmates..Sorry..I just NEED TO VENT

Good Morning Listmates,

I am writing today because I REALLY NEED TO VENT!!

Kyle has been attending the same school for he passed 8 yrs. NEVER
ONCE DID THEY EVER HAVE TO send him off to the hospital for seizure
activity.
WELL..this past year..since they have gotten a new nursing staff,
this woman calls for EVERY FREAKING SEIZURE!!
So..I either have to go to the school..every other day to pick him
from there...OR I have to go every month or so to the Hospital to
pick him up from the EMERGENCY ROOM!

The house Doctor EVEN SAID, RIGHT IN FRONT OF THE School Social
Worker, that it is REALLY UNNECESSARY FOR THIS CHILD TO GO THRU THIS
AS OFTEN AS HE HAS.
He has a seizure disorder...He's had seizures his whole little 12 yrs
of life..
He has about a dozen a day!!
Some days NOT as many...some days NOT AT ALL..but on the average
about 12..for sake of arguement.

I have told the nurse, that she is supposed to wait 15 minutes before
administering the Diastat...BUT SHE IS SO GUNG HO..and ready to stick
him with it!
AND SHE has also called my son's neuro, and "suggested" that she
increase the dosage of Diastat, and she wants the order changed to 5
minutes within the start of his seizure...WHICH...She has been told a
million times by the doctors..Neuro & Ped, NOT TO MENTION MYSELF!!
That Kyles seizures are CLUSTERS..NOT ONE PROLONGED SEIZURE!!
the doctors didn't even want to prescribe the diastat..but did so ,
to pacify the school. BUT NOW THE NURSE IS STEPPED OVER HER
BOUNDRIES. 
She has been pushing me into putting him on medication!
Which he has not been on meds in about 5 yrs!
SO...I don't care who she is, or who she thinks she is or what she
thinks she knows about seizures...but I am his mother...and I SAY NO
MEDS!!
she doesn't have a clue about seizures!
NOT A CLUE!!
Because she was not aware of CLUSTERS, and she is timing them from
the beginning of the seizure and WHAT SHE THINKS IS PART OF THE
SEIZURE IS POST ICTLE!
She DIDN'T KNOW WHAT POST ICTLE WAS!!
WHAT KIND OF NURSE IS SHE??
I could do a MUCH BETTER JOB THAN HER, and I'm not SCHOOLED FOR IT!
I've got ON THE JOB EXPERIENCE!I could be a freakin' nurse!
Each of "US" Parents could be Doctors!!
With all that we have gone thru with our children
Im digging through the old posts...I'm looking for any that contain
info on School Matters, and problems that others have had with their
schools & School Districts.
I have not been happy with this school for QUITE A WHILE...and SO I
GUESS I will have to look for another school!
I TOTALLY understand, that the school has to do what they have to
do..
there are rules and regulations that they need to follow...
BUT when they have Kyle's RECORDS...they have his seizure history.
AND IT CLEARLY STATES, that his seizures along with the post ictle
state..lasts for about 15-20!!
NOT THE SEIZURE ALONE...but with the post ictle state as well!
That woman should really go back to school..
Anyway...IF ANYONE Has gone through anything similiar...I'd greatly
appreciate any info you could send my way..

Have a blessed day
and thank you for listening...
I hate spilling my guts..I am quite angry..and just really needed a
shoulder.
WHICH I KNOW I CAN ALWAYS come here for one. OR SEVERAL..lol

love
hugs
&
blessings
Dee

Good Morning Listmates,

I am writing today because I REALLY NEED TO VENT!!

Kyle has been attending the same school for he passed 8 yrs. NEVER
ONCE DID THEY EVER HAVE TO send him off to the hospital for seizure
activity.
WELL..this past year..since they have gotten a new nursing staff,
this woman calls for EVERY FREAKING SEIZURE!!
So..I either have to go to the school..every other day to pick him
from there...OR I have to go every month or so to the Hospital to
pick him up from the EMERGENCY ROOM!

The house Doctor EVEN SAID, RIGHT IN FRONT OF THE School Social
Worker, that it is REALLY UNNECESSARY FOR THIS CHILD TO GO THRU THIS
AS OFTEN AS HE HAS.
He has a seizure disorder...He's had seizures his whole little 12 yrs
of life..
He has about a dozen a day!!
Some days NOT as many...some days NOT AT ALL..but on the average
about 12..for sake of arguement.

I have told the nurse, that she is supposed to wait 15 minutes before
administering the Diastat...BUT SHE IS SO GUNG HO..and ready to stick
him with it!
AND SHE has also called my son's neuro, and "suggested" that she
increase the dosage of Diastat, and she wants the order changed to 5
minutes within the start of his seizure...WHICH...She has been told a
million times by the doctors..Neuro & Ped, NOT TO MENTION MYSELF!!
That Kyles seizures are CLUSTERS..NOT ONE PROLONGED SEIZURE!!
the doctors didn't even want to prescribe the diastat..but did so ,
to pacify the school. BUT NOW THE NURSE IS STEPPED OVER HER
BOUNDRIES.
She has been pushing me into putting him on medication!
Which he has not been on meds in about 5 yrs!
SO...I don't care who she is, or who she thinks she is or what she
thinks she knows about seizures...but I am his mother...and I SAY NO
MEDS!!
she doesn't have a clue about seizures!
NOT A CLUE!!
Because she was not aware of CLUSTERS, and she is timing them from
the beginning of the seizure and WHAT SHE THINKS IS PART OF THE
SEIZURE IS POST ICTLE!
She DIDN'T KNOW WHAT POST ICTLE WAS!!
WHAT KIND OF NURSE IS SHE??
I could do a MUCH BETTER JOB THAN HER, and I'm not SCHOOLED FOR IT!
I've got ON THE JOB EXPERIENCE!I could be a freakin' nurse!
Each of "US" Parents could be Doctors!!
With all that we have gone thru with our children
Im digging through the old posts...I'm looking for any that contain
info on School Matters, and problems that others have had with their
schools & School Districts.
I have not been happy with this school for QUITE A WHILE...and SO I
GUESS I will have to look for another school!
I TOTALLY understand, that the school has to do what they have to
do..
there are rules and regulations that they need to follow...
BUT when they have Kyle's RECORDS...they have his seizure history.
AND IT CLEARLY STATES, that his seizures along with the post ictle
state..lasts for about 15-20!!
NOT THE SEIZURE ALONE...but with the post ictle state as well!
That woman should really go back to school..
Anyway...IF ANYONE Has gone through anything similiar...I'd greatly
appreciate any info you could send my way..

Have a blessed day
and thank you for listening...
I hate spilling my guts..I am quite angry..and just really needed a
shoulder.
WHICH I KNOW I CAN ALWAYS come here for one. OR SEVERAL..lol

love
hugs
&
blessings
Dee

Hi everyone! Happy to find a forum.
I am a 28 female w/ seizures for 12 yrs. Dont know why.
For some reason I have a mental block about taking my meds. Dr says Im
suffering from denial...for 12 years? Ever heard such a thing.
had a grad mal 2 weeks ago, fell, and I think I broke my chin amoung
other injuries. Husband found me in a pool of blood.  My cobra
insurance resently ran out, and I cant get another individual
insurance policy unless I have been seziure free for 3yrs. so Im
afraid to get checked out. Any wisdom??

--- In epilepsy-testimonials@yahoogroups.com, "roosterpookie"
<roosterpookie@y...> wrote:
> Hi everyone,
>
> I just found you guys! I have had epilepsy for 10 yrs now  ( i got
it
> late, I am 25) and I am starting to research having seizure surgery
> b/c the meds just arent doing it. I am looking at going to NYU for a
> consult. Any info would be great!

I went to Yale for my surgery, after being referred there by
neurologist at New York Hospital.  Dr. Dennis Spencer is one of the
top neurosurgeons in the field of epilepsy.  I have been seizure free
since the surgery in 1991 and now have my driver's license, a dream I
didn't dare think about at the age of 16.

RP,
Before you commit to surgery you may want to contact Dr. Eric Kossoff at
Johns Hopkins. He is doing a study using a modifed versionof the Atkins Diet
that is seeing remarkable success. My son became seizure free after failing
on three different meds. Here is a link for more information. Since it is a
study there is very minimal cost to the patient. Why not give diet a try
before you resort to surgery.
http://www.epilepsy-foundation.org/efcrAtkinsStudy.htm

Mike
----- Original Message -----
From: "roosterpookie" <roosterpookie@...>
To: <epilepsy-testimonials@yahoogroups.com>
Sent: Sunday, August 28, 2005 9:24 PM
Subject: [epilepsy-testimonials] New Here!


> Hi everyone,
>
> I just found you guys! I have had epilepsy for 10 yrs now  ( i got it
> late, I am 25) and I am starting to research having seizure surgery
> b/c the meds just arent doing it. I am looking at going to NYU for a
> consult. Any info would be great!
>
>
>
>
>
>
>
>
>
> Community email addresses:
>   Post message: epilepsy-testimonials@onelist.com
>   Subscribe:    epilepsy-testimonials-subscribe@onelist.com
>   Unsubscribe:  epilepsy-testimonials-unsubscribe@onelist.com
>   List owner:   epilepsy-testimonials-owner@onelist.com
>
> Shortcut URL to this page:
>   http://www.onelist.com/community/epilepsy-testimonials
> Yahoo! Groups Links
>
>
>
>
>
>
>
>

I guess you could say I'm a newby all over again; I haven't been here
for a while.
I've lived w/complex partial seizures for 28 yrs of my life. I had a
right temporal resection in 1999 and have been relitively seizure free
since. :) I still have them once in a while but nothing compared to
before. I still take medication daily;Lamictal.
When is chat held or is it held any longer? I work third shift now-I'm
looking for something else- but would love to join back in as soon as
possible.
Thanks again and hope everyone has a good day.:)
Deborah

Hi everyone,

I just found you guys! I have had epilepsy for 10 yrs now  ( i got it
late, I am 25) and I am starting to research having seizure surgery
b/c the meds just arent doing it. I am looking at going to NYU for a
consult. Any info would be great!

Hello,

I was reading about a powerful drug for epilepsy.

It is very powerful and effective, except it has serious potential side
effects.  I forgot its name.

Can anyone help me out?

Thanks,

Denise

I want to pass this on. It was posted in my group,
http://health.groups.yahoo.com/group/EpilepsyApproach/

this was posted:

I need to tell you all some very bad news and I know I have missed
some
> ppl but at this point I'm just not functioning.So if you all could
help
> me out and tell anyone that I've 4gotten I sure would appreciate
it.
>     Yesterday,my 23 year old son Eric passed away unexpecdedely.He
was
> prone to seizures and was fishing on a pier.He had a seizure and
fell
> into the water and drowned.They tried to revive him but it was to
> late.His heart just couldn't take it.I am just so devastated.This
was
> my
> baby.
>    If anyone is interested donations are being made in his name to
> Epilepsy Foundation
> ATTN-Accounting Dept
> 4351 Garden City Dr
> Landover,MD 20785-7223
> his name is Eric S.Raynor

No virus found in this outgoing message.
Checked by AVG Anti-Virus.
Version: 7.0.323 / Virus Database: 267.7.8/22 - Release Date: 6/17/2005

There is a new web site created by the parents of a child in the study
at Johns Hopkins using the Atkins Diet for seizure control. Here is a
link to learn more. Please spread the word to those that may be
interested in exploring this viable alternative to meds for seizure
control.

http://atkinsforseizures.com/

Thanks,
Michael M

I am getting a mini-goat next week. I heard that the milk of the
mini goats is a lot sweeter than the milk of a large goat. I am going
to try it out and see. The guy I am getting it from has epilepsy also
and he just has to many goats he says.

Hello everyone.

I am Birdbomb and I have a VNS.  My unit is turned off over a year ago and will stay off.  I was not one of the lucky ones, the adverse effects out weighed any benifit I received. 

At the present time I am 3 months seizure free.  The longest I ever went was 33 days and that was from the VNS.  The current dry spell has bee brought on by my knee replacement I had done in November.  They found my iron to be "a little low" so supplements were started.  Once my iron levels were normal all activity stopped.  The only other difference was my Dilantin was increased from 300mg to 400mg.

I am excited and amazed an scared.  If low iron was the ONLY reason for my seizures, then I am furious about it.  But then, it's lile waitng for the other shoe to drop.  Will there be any more seizures?

Here is someting I'd like to share. I have a support message board for people with the VNS or just thinking about it.  There are wonderful success stories and nightmares about the VNS here.  Why not pop in for a look-see.  If you like it, you will have to join to post but it's free.

Hope to see you there.

Birdbomb








Community email addresses:
  Post message: epilepsy-testimonials@onelist.com
  Subscribe:    epilepsy-testimonials-subscribe@onelist.com
  Unsubscribe:  epilepsy-testimonials-unsubscribe@onelist.com
  List owner:   epilepsy-testimonials-owner@onelist.com

Shortcut URL to this page:
  http://www.onelist.com/community/epilepsy-testimonials

Hello everyone.

I am Birdbomb and I have a VNS.  My unit is turned off over a year ago and will
stay off.  I was not one of the lucky ones, the adverse effects out weighed any
benifit I received.

At the present time I am 3 months seizure free.  The longest I ever went was 33
days and that was from the VNS.  The current dry spell has bee brought on by my
knee replacement I had done in November.  They found my iron to be "a little
low" so supplements were started.  Once my iron levels were normal all activity
stopped.  The only other difference was my Dilantin was increased from 300mg to
400mg.

I am excited and amazed an scared.  If low iron was the ONLY reason for my
seizures, then I am furious about it.  But then, it's lile waitng for the other
shoe to drop.  Will there be any more seizures?

Here is someting I'd like to share. I have a support message board for people
with the VNS or just thinking about it.  There are wonderful success stories and
nightmares about the VNS here.  Why not pop in for a look-see.  If you like it,
you will have to join to post but it's free.

Hope to see you there.

Birdbomb

I decided to start my own support group, because of the 35 years of
experience with epilepsy. From surgery after surgery, Ketogenic Diet,
VNS, different vitamins.....
Please come and join my new epilepsy group and share in your stories.
http://health.groups.yahoo.com/group/EpilepsyApproach/
Lisa Schreiner

I just came back from an epilepsy conference today. And they handed
out these books with all the pharmaceutical information for all the
epilepsy medication.
Here is a web site that can help with medication when you can not
afford it.
www.helpingpatients.org

Lisa

Sara, I must of read someones elses comments, sorry. Oh that is
fine. That is a usually for after surgery. I would not worry about
it. Your brain is still healing. Even if you have it for the for
first year that is okay. But I would never believe the first year,
but that is what they say.
So dont worry.
best of luck to you.
Lisa

--- In epilepsy-testimonials@yahoogroups.com, Sarah Melendez
<sarbear7dc@s...> wrote:
> Lisa,
>  I just recently had my surgery. In fact, September 24 will make 3
months since surgery. My doctors say that even if I have a seizure
now it would be okay because it is still so soon after surgery.
> Sarah
>
> angel_lts@y... wrote:
> Sara, I had my surgery 1996 and 97. If you had yours in 94????? I
> dont think they will get any better than tha,t it has been years
> since your surgery. Did these just start up and the auras too ???
> Lisa
>
> --- In epilepsy-testimonials@yahoogroups.com, Sarah Melendez
> <sarbear7dc@s...> wrote:
> > Hi Lisa,
> >  How long has it been since your surgery and are you still
having
> auras?  I really think that the occassional one with loss of time
is
> an absence seizure. However, my neurologist tells me that it is
fine
> as long the auras are isolated. He also said that it is still
really
> early post op, and that they should stop with time. In the
meantime,
> I try really hard not to stress or analyze over them, but it's
hard.
> Thanks for writing.
> > Sarah
> >
> > angel_lts@y... wrote:
> > Sara, Auras can change after surgery. The seizures that you had
> > before surgery sounds like they changed into auras. That is what
> > happened to mine. But the loss of time sounds like a very slight
> > seizure. Just keep an eye on that for that can change into
longer
> > length of time in the future.
> > Lisa
> >
> > --- In epilepsy-testimonials@yahoogroups.com, "Sarah"
> > <sarbear7dc@s...> wrote:
> > > Hi! My name is Alison Pinsley and I am a testimony to
successful
> > > brain surgery to stop my epileptic seizures. The surgery was
done
> > > in 1991 at Yale New-Haven Hospital. Anyone with questions,
please
> > > feel free to ask, I will help if at all possible.
> > >
> > > Hello! My name is Sarah and I am a 21 year old nursing
student.
> I
> > > have had epilepsy since I was 14 years old. At 14 it was
> > classified
> > > as absence seizures. It gradually worsened, and I started
having
> > > complex partial seizures and 2 grand mal. Once I started
having
> > the
> > > grand mal I knew surgery was my only option. (i had already
> tried
> > 6
> > > different medications with no success) I had my surgery at
> > > Northwestern Memorial in Chicago on June 24, 2004. They
removed
> my
> > > right hippocampus and part of the temporal lobe. It's amazing
> what
> > > brain surgery can do for you besides rid the seizures. I have
> such
> > > an appreciation for the little things now.
> > > I have a question for those who have had the surgery. Since my
> > > surgery, I've been having auras. These auras aren't anything
> like
> > > the auras I had presurgery. Most of the time it's just a weird
> > > sensation in the chest/ throat region. But every once in a
> while,
> > > it just feels like a loss of time for maybe 5 seconds. Sorry
to
> be
> > > so vague. Whatever those are, reminds me of absence seizures.
> Any
> > > insite on this?
> > > I look forward to getting to know you guys and hearing your
> > stories.
> > > Thanks
> >
> >
> >
> > Community email addresses:
> >   Post message: epilepsy-testimonials@onelist.com
> >   Subscribe:    epilepsy-testimonials-subscribe@onelist.com
> >   Unsubscribe:  epilepsy-testimonials-unsubscribe@onelist.com
> >   List owner:   epilepsy-testimonials-owner@onelist.com
> >
> > Shortcut URL to this page:
> >   http://www.onelist.com/community/epilepsy-testimonials
> >
> >
> > Yahoo! Groups SponsorADVERTISEMENT
> >
> >
> > ---------------------------------
> > Yahoo! Groups Links
> >
> >    To visit your group on the web, go to:
> > http://groups.yahoo.com/group/epilepsy-testimonials/
> >
> >    To unsubscribe from this group, send an email to:
> > epilepsy-testimonials-unsubscribe@yahoogroups.com
> >
> >    Your use of Yahoo! Groups is subject to the Yahoo! Terms of
> Service.
>
>
>
> Community email addresses:
>   Post message: epilepsy-testimonials@onelist.com
>   Subscribe:    epilepsy-testimonials-subscribe@onelist.com
>   Unsubscribe:  epilepsy-testimonials-unsubscribe@onelist.com
>   List owner:   epilepsy-testimonials-owner@onelist.com
>
> Shortcut URL to this page:
>   http://www.onelist.com/community/epilepsy-testimonials
>
>
> Yahoo! Groups SponsorADVERTISEMENT
>
>
> ---------------------------------
> Yahoo! Groups Links
>
>    To visit your group on the web, go to:
> http://groups.yahoo.com/group/epilepsy-testimonials/
>
>    To unsubscribe from this group, send an email to:
> epilepsy-testimonials-unsubscribe@yahoogroups.com
>
>    Your use of Yahoo! Groups is subject to the Yahoo! Terms of
Service.

Sara, I had my surgery 1996 and 97. If you had yours in 94????? I
dont think they will get any better than tha,t it has been years
since your surgery. Did these just start up and the auras too ???
Lisa

--- In epilepsy-testimonials@yahoogroups.com, Sarah Melendez
<sarbear7dc@s...> wrote:
> Hi Lisa,
>  How long has it been since your surgery and are you still having
auras?  I really think that the occassional one with loss of time is
an absence seizure. However, my neurologist tells me that it is fine
as long the auras are isolated. He also said that it is still really
early post op, and that they should stop with time. In the meantime,
I try really hard not to stress or analyze over them, but it's hard.
Thanks for writing.
> Sarah
>
> angel_lts@y... wrote:
> Sara, Auras can change after surgery. The seizures that you had
> before surgery sounds like they changed into auras. That is what
> happened to mine. But the loss of time sounds like a very slight
> seizure. Just keep an eye on that for that can change into longer
> length of time in the future.
> Lisa
>
> --- In epilepsy-testimonials@yahoogroups.com, "Sarah"
> <sarbear7dc@s...> wrote:
> > Hi! My name is Alison Pinsley and I am a testimony to successful
> > brain surgery to stop my epileptic seizures. The surgery was done
> > in 1991 at Yale New-Haven Hospital. Anyone with questions, please
> > feel free to ask, I will help if at all possible.
> > 
> > Hello! My name is Sarah and I am a 21 year old nursing student.
I
> > have had epilepsy since I was 14 years old. At 14 it was
> classified
> > as absence seizures. It gradually worsened, and I started having
> > complex partial seizures and 2 grand mal. Once I started having
> the
> > grand mal I knew surgery was my only option. (i had already
tried
> 6
> > different medications with no success) I had my surgery at
> > Northwestern Memorial in Chicago on June 24, 2004. They removed
my
> > right hippocampus and part of the temporal lobe. It's amazing
what
> > brain surgery can do for you besides rid the seizures. I have
such
> > an appreciation for the little things now.
> > I have a question for those who have had the surgery. Since my
> > surgery, I've been having auras. These auras aren't anything
like
> > the auras I had presurgery. Most of the time it's just a weird
> > sensation in the chest/ throat region. But every once in a
while, 
> > it just feels like a loss of time for maybe 5 seconds. Sorry to
be
> > so vague. Whatever those are, reminds me of absence seizures.
Any
> > insite on this?
> > I look forward to getting to know you guys and hearing your
> stories.
> > Thanks
>
>
>
> Community email addresses:
>   Post message: epilepsy-testimonials@onelist.com
>   Subscribe:    epilepsy-testimonials-subscribe@onelist.com
>   Unsubscribe:  epilepsy-testimonials-unsubscribe@onelist.com
>   List owner:   epilepsy-testimonials-owner@onelist.com
>
> Shortcut URL to this page:
>   http://www.onelist.com/community/epilepsy-testimonials
>
>
> Yahoo! Groups SponsorADVERTISEMENT
>
>
> ---------------------------------
> Yahoo! Groups Links
>
>    To visit your group on the web, go to:
> http://groups.yahoo.com/group/epilepsy-testimonials/
>  
>    To unsubscribe from this group, send an email to:
> epilepsy-testimonials-unsubscribe@yahoogroups.com
>  
>    Your use of Yahoo! Groups is subject to the Yahoo! Terms of
Service.



Community email addresses:
  Post message: epilepsy-testimonials@onelist.com
  Subscribe:    epilepsy-testimonials-subscribe@onelist.com
  Unsubscribe:  epilepsy-testimonials-unsubscribe@onelist.com
  List owner:   epilepsy-testimonials-owner@onelist.com

Shortcut URL to this page:
  http://www.onelist.com/community/epilepsy-testimonials

Yahoo! Groups Sponsor

ADVERTISEMENT

Sara, I had my surgery 1996 and 97. If you had yours in 94????? I
dont think they will get any better than tha,t it has been years
since your surgery. Did these just start up and the auras too ???
Lisa

--- In epilepsy-testimonials@yahoogroups.com, Sarah Melendez
<sarbear7dc@s...> wrote:
> Hi Lisa,
>  How long has it been since your surgery and are you still having
auras?  I really think that the occassional one with loss of time is
an absence seizure. However, my neurologist tells me that it is fine
as long the auras are isolated. He also said that it is still really
early post op, and that they should stop with time. In the meantime,
I try really hard not to stress or analyze over them, but it's hard.
Thanks for writing.
> Sarah
>
> angel_lts@y... wrote:
> Sara, Auras can change after surgery. The seizures that you had
> before surgery sounds like they changed into auras. That is what
> happened to mine. But the loss of time sounds like a very slight
> seizure. Just keep an eye on that for that can change into longer
> length of time in the future.
> Lisa
>
> --- In epilepsy-testimonials@yahoogroups.com, "Sarah"
> <sarbear7dc@s...> wrote:
> > Hi! My name is Alison Pinsley and I am a testimony to successful
> > brain surgery to stop my epileptic seizures. The surgery was done
> > in 1991 at Yale New-Haven Hospital. Anyone with questions, please
> > feel free to ask, I will help if at all possible.
> >
> > Hello! My name is Sarah and I am a 21 year old nursing student.
I
> > have had epilepsy since I was 14 years old. At 14 it was
> classified
> > as absence seizures. It gradually worsened, and I started having
> > complex partial seizures and 2 grand mal. Once I started having
> the
> > grand mal I knew surgery was my only option. (i had already
tried
> 6
> > different medications with no success) I had my surgery at
> > Northwestern Memorial in Chicago on June 24, 2004. They removed
my
> > right hippocampus and part of the temporal lobe. It's amazing
what
> > brain surgery can do for you besides rid the seizures. I have
such
> > an appreciation for the little things now.
> > I have a question for those who have had the surgery. Since my
> > surgery, I've been having auras. These auras aren't anything
like
> > the auras I had presurgery. Most of the time it's just a weird
> > sensation in the chest/ throat region. But every once in a
while,
> > it just feels like a loss of time for maybe 5 seconds. Sorry to
be
> > so vague. Whatever those are, reminds me of absence seizures.
Any
> > insite on this?
> > I look forward to getting to know you guys and hearing your
> stories.
> > Thanks
>
>
>
> Community email addresses:
>   Post message: epilepsy-testimonials@onelist.com
>   Subscribe:    epilepsy-testimonials-subscribe@onelist.com
>   Unsubscribe:  epilepsy-testimonials-unsubscribe@onelist.com
>   List owner:   epilepsy-testimonials-owner@onelist.com
>
> Shortcut URL to this page:
>   http://www.onelist.com/community/epilepsy-testimonials
>
>
> Yahoo! Groups SponsorADVERTISEMENT
>
>
> ---------------------------------
> Yahoo! Groups Links
>
>    To visit your group on the web, go to:
> http://groups.yahoo.com/group/epilepsy-testimonials/
>
>    To unsubscribe from this group, send an email to:
> epilepsy-testimonials-unsubscribe@yahoogroups.com
>
>    Your use of Yahoo! Groups is subject to the Yahoo! Terms of
Service.

Sara, Auras can change after surgery. The seizures that you had
before surgery sounds like they changed into auras. That is what
happened to mine. But the loss of time sounds like a very slight
seizure. Just keep an eye on that for that can change into longer
length of time in the future.
Lisa

--- In epilepsy-testimonials@yahoogroups.com, "Sarah"
<sarbear7dc@s...> wrote:
> Hi! My name is Alison Pinsley and I am a testimony to successful
> brain surgery to stop my epileptic seizures. The surgery was done
> in 1991 at Yale New-Haven Hospital. Anyone with questions, please
> feel free to ask, I will help if at all possible.
> 
> Hello! My name is Sarah and I am a 21 year old nursing student. I
> have had epilepsy since I was 14 years old. At 14 it was
classified
> as absence seizures. It gradually worsened, and I started having
> complex partial seizures and 2 grand mal. Once I started having
the
> grand mal I knew surgery was my only option. (i had already tried
6
> different medications with no success) I had my surgery at
> Northwestern Memorial in Chicago on June 24, 2004. They removed my
> right hippocampus and part of the temporal lobe. It's amazing what
> brain surgery can do for you besides rid the seizures. I have such
> an appreciation for the little things now.
> I have a question for those who have had the surgery. Since my
> surgery, I've been having auras. These auras aren't anything like
> the auras I had presurgery. Most of the time it's just a weird
> sensation in the chest/ throat region. But every once in a while, 
> it just feels like a loss of time for maybe 5 seconds. Sorry to be
> so vague. Whatever those are, reminds me of absence seizures. Any
> insite on this?
> I look forward to getting to know you guys and hearing your
stories.
> Thanks



Community email addresses:
  Post message: epilepsy-testimonials@onelist.com
  Subscribe:    epilepsy-testimonials-subscribe@onelist.com
  Unsubscribe:  epilepsy-testimonials-unsubscribe@onelist.com
  List owner:   epilepsy-testimonials-owner@onelist.com

Shortcut URL to this page:
  http://www.onelist.com/community/epilepsy-testimonials

Hello! My name is Sarah and I am a 21 year old nursing student. I
> have had epilepsy since I was 14 years old.

Sara,

I didn't experience this sensation, so I cannot help with what it might be.  What do your doctor's think is causing this aura?  Anyway, congratulations on being seizure free.  It is a big relief to be able to get on with your life.  Your appreciation for things really does change after living a somewhat unsettled life while you have seizures.

Alison

feel free to e-mail me off list if you would like.

Sara, Auras can change after surgery. The seizures that you had
before surgery sounds like they changed into auras. That is what
happened to mine. But the loss of time sounds like a very slight
seizure. Just keep an eye on that for that can change into longer
length of time in the future.
Lisa

--- In epilepsy-testimonials@yahoogroups.com, "Sarah"
<sarbear7dc@s...> wrote:
> Hi! My name is Alison Pinsley and I am a testimony to successful
> brain surgery to stop my epileptic seizures. The surgery was done
> in 1991 at Yale New-Haven Hospital. Anyone with questions, please
> feel free to ask, I will help if at all possible.
>
> Hello! My name is Sarah and I am a 21 year old nursing student. I
> have had epilepsy since I was 14 years old. At 14 it was
classified
> as absence seizures. It gradually worsened, and I started having
> complex partial seizures and 2 grand mal. Once I started having
the
> grand mal I knew surgery was my only option. (i had already tried
6
> different medications with no success) I had my surgery at
> Northwestern Memorial in Chicago on June 24, 2004. They removed my
> right hippocampus and part of the temporal lobe. It's amazing what
> brain surgery can do for you besides rid the seizures. I have such
> an appreciation for the little things now.
> I have a question for those who have had the surgery. Since my
> surgery, I've been having auras. These auras aren't anything like
> the auras I had presurgery. Most of the time it's just a weird
> sensation in the chest/ throat region. But every once in a while,
> it just feels like a loss of time for maybe 5 seconds. Sorry to be
> so vague. Whatever those are, reminds me of absence seizures. Any
> insite on this?
> I look forward to getting to know you guys and hearing your
stories.
> Thanks

Hi! My name is Alison Pinsley and I am a testimony to successful
brain surgery to stop my epileptic seizures. The surgery was done
in 1991 at Yale New-Haven Hospital. Anyone with questions, please
feel free to ask, I will help if at all possible.

Hello! My name is Sarah and I am a 21 year old nursing student. I
have had epilepsy since I was 14 years old. At 14 it was classified
as absence seizures. It gradually worsened, and I started having
complex partial seizures and 2 grand mal. Once I started having the
grand mal I knew surgery was my only option. (i had already tried 6
different medications with no success) I had my surgery at
Northwestern Memorial in Chicago on June 24, 2004. They removed my
right hippocampus and part of the temporal lobe. It's amazing what
brain surgery can do for you besides rid the seizures. I have such
an appreciation for the little things now.
I have a question for those who have had the surgery. Since my
surgery, I've been having auras. These auras aren't anything like
the auras I had presurgery. Most of the time it's just a weird
sensation in the chest/ throat region. But every once in a while,
it just feels like a loss of time for maybe 5 seconds. Sorry to be
so vague. Whatever those are, reminds me of absence seizures. Any
insite on this?
I look forward to getting to know you guys and hearing your stories.
Thanks

Hi Andy,

I hope that I can be of some help.  The type of seizure which your son is having
goes by a variety of terms:  psyho-motor; complex-partial; or temporal lobe.  I
know, because I suffered from this type of seizure for 31 years, before
undergoing successful surgery for removal of the scar tissue, which had been
caused by a febrile seizure when I was 14 months old.  You sound like you're
going through what my parents went through 45 years ago in the 1960's.  Today's
day and age and all the technology available, shouldn't leave people in the dark
about anything.

I am sorry that your son is experiencing seizures.  I hope that you have a good
pediatric neurologist, for that's whom you should be turning to for help.

Feel free to e-mail me off list at: a.pinsley@....

Alison Pinsley