Epilepsy Google Group

childhood epilepsy and memory problems

2009-03-08T19:01:14Z

Hello again,

Thank you all for helping me with my research project on childhood
epilepsy
and memory problems. I am hopeful to gather a few more participants in
order
to complete my project and would be delighted if you would consider
taking
my survey at [link]

childhood epilepsy and memory problems

2009-01-20T00:45:47Z

Hello again,
Thank you all for helping me with my research project on childhood epilepsy
and memory problems. I am hopeful to gather a few more participants in order
to complete my project and would be delighted if you would consider taking
my survey if you have not done so yet. Below is the blurb I sent out a month

childhood epilepsy and memory problems

2008-10-29T01:36:21Z

Hello All-

I won't even pretend to understand what it is like to raise a child
with epilepsy.... And while I can't imagine what it is like to walk in
those shoes I think we would all agree that we need to learn more
about epilepsy for the sake of improving the lives of children and
their families. That is exactly why I have chosen to do my

Seizures and Barometric Pressure

2008-05-25T16:54:25Z

John...
Your email is very informative because I have tried to relate my seizure activity to the weather in many ways. Of course, since I'm on meds, I don't have full-blown seizures unless something is very wrong. However, we all know how we feel and it seems that barometric pressure has a lot to do with my seizure feelings...the humidity affects the other parts of my body, but doesn't seem to affect my head. As I probably mentioned, I tried to keep a list for at least a month, but got busy with other things and haven't gone back to it. There is one detail that I've always noticed and that is the heavy, pushed down feeling that I get right before it rains...after the rain starts, the feeling goes away. This is 1 important reason that living in Oregon (even Central Oregon) is sometimes difficult...I usually feel much better in a warmer (hotter) climate and eventually plan to move back to Las Vegas or Apple Valley in California.

Unofficial Findings Regarding Epilepsy & Weather

2008-05-13T18:10:35Z

Hello All,

I would like to say thank you all for your information. Though I
cannot make an official announcement at this time, I would like all of
you to know that no matter what the zipcode, it appears - *** appears
*** - that more people with seizures are seizing 24-48 hours prior to
severe weather changes.

WEB SITES ON TRAUMATIC BRAIN INJURY

2008-01-03T00:08:30Z

Many of you probably know that the reason for 70% of seizures is
unknown still. However, doctors have been able to relate many seizure
disorders to TBI's or Traumatic Brain Injuries. Mine is such. I
thought it might be helpful to post this for any of you others that
may fall into that group.

Cheers,

Looking For Someone To Make A New Logo

2007-08-24T16:59:54Z

Hello All,
Seeing that Shake That Seizure ( [link] ) is going
through some changes, I am wondering if there is anybody here in the
group that would be up for making a new banner for the one currently
on the website. I am hoping for something colorful - out with the
black and grey and let's get something different there.

Time to get cracking again!

2007-02-20T14:18:27Z

Hello All,
It has been a long year for me and I have been quite absent from my
duties here in the group. I will be updating the website soon and
would love to hear comments from all of you about content that you
would like to see. If you have interesting articles or other
information that you think would be good for the website and its new

topamax with some success

2007-01-11T02:43:14Z

I was diagnosed when I was 18 and had 4 grand mals including other
small ones, not sure what you call them. I have been on 3 diffrent
meds. I am now 28 yrs old. Unable to drive dont really want to, do miss
it though.

Benign Epilepsy

2006-10-04T20:00:26Z

My son has recently been diagnosed as having a Benign Epilepsy
disorder. It has been explained to us that he has been having seizures
in his sleep that do not manifest themselves as a physical seizure. We
have been trying to get a better understanding of what is going on with
him and what we can expect in the future. If anyone could guide us to a

22nd Annual Family Camp Fun & Friendship

2006-09-07T02:50:19Z

The Epilepsy Foundation of Greater Los Angeles is pleased to announce
its 22nd Annual Camp Family Fun & Friendship on September 15-17, 2006,
in Malibu/Calabasas, California. This Camp is for children with
epilepsy between the ages of 5 and 19 and their parents and siblings.
Participants will find this year's Hawaiian theme woven throughout

Klonopin Withdrawals

2006-07-31T12:40:46Z

Hello all,
Anybody have to come off Klonopin and have horrible withdrawals?
Thanks!
John

Great News!!!!

2006-06-23T13:51:48Z

I have some great news! Sadly, I haven't found the cure for Epilepsy so
it isn't that. But I have created a form system on the website:
[link] where people can enter in seizure
information for the research project that I have been putting off now
for about a year. So please feel free to check it out and leave data if

medial/mesial temporal sclerosis

2006-05-26T01:26:05Z

Hey, I actually joined the group a while back but never posted. My
neurologist believes I've got medial temporal sclerosis. However, the
info I've found on it describes it as something usually seen with
complex partial seizures. My seizures are better described as
generalized tonic-clonic, definitely not complex partial. Does anyone

Jenn's new group

2006-05-20T05:50:15Z

This group will be changed to My new disability group. It is called
Living with disabilities and it will be easier to comunicate. I am
merging all of my disability groups so I know who is in my group and
easier to control. Please join] It is called Living with disabilities
and it will be easier to comunicate. I am merging all of my disability

New to Group

2006-05-11T18:58:10Z

I have had Epilepsy since the age of 8 and am now 32 and have been on
alot of meds since then and am now on Topamax and Phoenobarbitol.
I am new here and would like to know what all is out there and am also
here to offer whatever advise I can.
Hope to hear from you....Thanks!
Frenchi

Update

2006-05-11T15:17:08Z

Hello All,
John Coyle here and I know its been forever since I have submitted a
note to the group. I have been having my own issues but I am glad to
say that the website should be getting some changes soon.
I would like to know (now that we have over 100 members ) what
everybody would like this group to focus on. Also, if any of you have

Re: FROM EPILEPSY: Re: Vagus Nerve Stimulator

2006-03-26T17:04:00Z

Hi Craig! My implant is set at 3minutes and it goes off again. My voice
still changes at times but not often and I haven't had many seizurese since my
implant. It really seemed to change my life!!!. Hope this has helped you. Take
care and good luck, Donna

Complex-Partial Seizures: How I become (mostly)seizure free

2006-03-25T06:20:14Z

Hello,
For the past ten years I have been living with epilepsy.
The biggest problem I had prior was breakthrough seizures. As I am sure
most of you know, the are the shits!
For the longest time I have been using dylantin/phenotyn.
I was then given another complementary and well known medication called

VNS

2006-03-24T12:07:18Z

My husband got his first implant on his 39 birthday 6 years ago. He will go on this Tuesday for his second implant... We are very satisfied with it... He went from having 250 to 300 Grand Mal's (not including multiple thousand other seizures of various kinds) to 6 his first year... It has greatly increased his quality of life...He has a life now....He was a definite home body cause he was scared to go anywhere... Now he can go just about anywhere.... His implant is set to go off every 11/2 min. His voice doesn't change now..That went away aftera few years.... but when they would turn it up he could feel it more for a few days, and he doesn't cough anymore. He is still on the same amout of meds as he was before because his neuro just won't cut down on his meds, even though he does no longer take phenobarb. If you have anymore questions feel free to ask... My hubby was the first one in our town to get his implant... so we consider him an ol' seasoned patient...

Re: Vagus Nerve Stimulator

2006-03-22T19:58:14Z

Hi! My name is Donna and I have had the vagus nerve stimulator fo several
years now. It works well for me along with my Carbatrol and Zonegran. I have a
better quality of life than I did before I got the V.N.S. For more info,
contact, 1-800-332-1372 or contact me at disability pl...@aol.com. I have had

More information is needed

2006-03-20T15:12:53Z

Hello my name is Joe Carrillo,
Is there a phone number where I can speak to the
someone at the epilepsy foundation? I will be calling
from San Diego, California
______________________________ ____________________
Do You Yahoo!?
Tired of spam? Yahoo! Mail has the best spam protection around
[link]

status

2006-03-18T11:52:22Z

Hello Everyone!!
Can I ask,has anyone in this group had any experience
with Non Convulsive Status Epilepticus?I have a 16yr old son with Cerebral
Palsy who also suffers this very tricky condition!!Would love to hear from
anyone who has had to deal with this nightmare!!
Many thanks and best regards,

Re: 2 new messages in 1 topic - digest

2006-03-18T01:17:32Z

Joy I can see how you are feeling b/c I my self felt that way in 2000 before
i went for my surgery. I was at the breaking point of no return wanting out
and felt surgery was going to be the light at my end of the tunnel when my
Dr actually mentioned it. 2002 I eneded up having my surgery and now this

helping a loved one with their condition

2006-03-17T11:19:34Z

Hi there,
just wanting to know if others have had a hard time coming to terms
with their epilepsy, especially if recently diagnosed, and how they
delt with the restrictions that their condition brought upon their
usual way of life. My partner is having a real hard time with not being
allowed to drive, he thinks he has no life now especially as we live

Vagus Nerve Stimulator

2006-03-13T06:08:57Z

Good Day..... I am curious if someone has had a vagus nerve stimulator
implanted to control their seizures. I had one put in 6 months ago and
have had wonderful results. While it hasn't stopped all of them it has
reduced them by approx 75%. I'm wondering if someone else has had one
longer and seen their seizures reduced even more with time. Take Care

Former Epilepsy Chat Host for AOL:)

2006-02-09T01:13:41Z

Hello, everyone:) I'm new to your board, but have known quite a bit
about Epilepsy all my life. I had my first seizure when I was 1 1/2
yrs old and the last seizure I had was about six years ago, a couple of
years after I had a right temporal lobectomy to control them. I hosted
Epilepsy Chats on AOL for ten years and hope to share experiences and

Changing Meds - any advice please

2006-01-09T23:10:20Z

Hi,
I was diagnosed with epilepsy for 11 years but have had it for about
15 years. For the last 10 years I have been on lamictal (400mg) and
Zarontin (ethosuximide) - 750mg per day. Zarontin only controls absence
seizures. I get both tonic clonic and absence seizures. I recently
had a break through seizure ( first in 9 years) as a result of my

brain surgery

2005-11-10T18:27:00Z

On February 18 2003 I had lift temporal lobe surgery. I have had no
siezures since then. Before I became an advocate for people with a
disability I faciliated a self help for people with a siezure disorder.
I was on Speaker,s Bureau of The Epilepsy Foundation of New Jersey. I
am willing to share my story. Do you have chat room?

pilot study ADHD test online

2005-11-09T16:17:06Z

Several years ago I developed a short paper and pencil screening test
which, in a small pilot study, discriminated between ADHD, LD, and
control subjects. I recently converted this test to an online test in
order to norm it to a larger population and, subsequently, to make it
available to any one who has access to a computer and the Internet.

CONSULTA

2005-10-23T19:00:32Z

HOLA SOY DE ECUADOR Y QUISIERA SABER SI ALGUIEN TIENE RESPUESTAS A MIS
PREGUNTAS. YO TENGO 29 AÑOS Y DESDE HACE MAS O MENOS 25 AÑOS QUE TENGO
SINTOMAS MUY PARECIDOS A LOS DE LA EPILEPSIA, POR EJEMPLO TENGO CONVULSIONES
PERO SOLAMENTE EN LA PARTE IZQUIERDA DE MI CUERPO, ES DECIR PIERNA IZQUIERDA

Topamax

2005-09-22T17:37:58Z

My 4 year old daughter started this medication 2 months ago and has not
had a seizure since. This is her 3rd medicine after keppra and
tegretol.
Has anyone else had experience with this medicine?

Back In Business!

2005-09-22T13:26:10Z

Hello All,
John Coyle here. It has been a long time since my first and only post.
Lets get talking about epilepsy again. I apologize for my poor
management of the group since its creation, but some health concerns
came up and things got nasty for the summer of 2005.
Who needs my ears? I am listening and hopefully I can help!

Re: FW: SIGN PLEASE - Stop clubbing of seals!!

2005-08-30T06:39:56Z

PLEASE PASS THIS ON BUT BRACE YOURSELF - IF YOU ARE OF THE FAINT HEARTED
VARIETY THEN DON'T LOOK AT THE ATTACHMENT JUST SIGN THE PETITION AND PASS
ON. YOU CAN MAKE A DIFFERENCE!!! (See attached file: Paremose.pps)

Petition :

Stop the senseless killing of defenseless seals!!
Please forward to i...@peta.org after every 500 signatures...also, please

Fwd: FW: Justice

2005-08-02T09:32:30Z

Sometimes justice isn't good

A lesson in fastracking emigration

Liverpool, United Kingdom, by two 10-year-old boys. Jamie Bulger walked away
from his mother for only a second and Jon Venables took his hand and led him
out of the mall with his friend Robert Thompson. They took Jamie on a walk

Fwd: FW: Mens rules..

2005-08-02T08:57:34Z

does anyone post here anymore

2005-07-05T21:36:00Z

I'm on digest and have not recieve a post in sometime. Has there been
any activity on this board lately?

who has read the latest article of national geographic??

2005-04-30T11:33:09Z

hi everybody
have you seen the latest article of march 2005 about the MIND?
it's confusing and maybe challenging. I wanna know that any body have
any especial topic about it?

Re: FROM EPILEPSY: Where We Are From

2005-04-23T17:46:25Z

i an from Tennessee and have never left :)
Allie

Hi, last person posted a question about where people are from. Well,
here is the new thread. I am from South Carolina but living happily in
Brooklyn, NY. How about the rest of you?

Cheers,

John Coyle

signature YELLOW STAR

______________________________ ____________________

Where We Are From

2005-04-23T05:53:40Z

Hi, last person posted a question about where people are from. Well,
here is the new thread. I am from South Carolina but living happily in
Brooklyn, NY. How about the rest of you?
Cheers,
John Coyle

Re: FROM EPILEPSY: Where did everyone go

2005-04-20T02:40:59Z

we are here. not much activity in the group lately :( sorry to hear about your seizure but glad you are OK now.
Allie

Where is everyone? Been really quite around these parts.
I had my yearly seizure Saturday. I love it when people ask. How do you
know if you had a seizure at night.
Let's see, the bed is soaked with urine, from my head to my toes I hurt

Where did everyone go

2005-04-19T22:39:24Z

RE: 2 new messages in 1 topic - digest

2005-03-25T11:10:19Z

John,
Just yell and I'll be glad to help out.

Chris

-----Original Message-----
Sent: Friday, March 25, 2005 3:35 AM
To: Epilepsy digest subscribers

Epilepsy
[link]
Epilepsy@googlegroups.com

Today's topics:

* Apologies To The Group - 2 messages, 2 authors

Apologies To The Group

2005-03-24T14:13:30Z

Hello All,
John Coyle, your moderator, here. I apologize that the group has been
receiving spam and I have done my best to remove it. Google Groups is
still in the BETA stage and like anything with Google, these messages
can be searched. So, it makes sense that we will - like any group - be
attacked with garbage. I have turned the settings so that membership

Re: Hi I am new to the group

2005-03-20T00:55:46Z

hello Nicole. welcome to the group. i am Allie, mom to one son who is 7. he has complex partial with secondary generalized epilepsy.
i myself would also be nervous about driving.

Hi my name is Nicole. I am 22 years old and have complex partial
seizure disorder but I have been seizure free for over two years

Hi I am new to the group

2005-03-19T18:40:40Z

Hi my name is Nicole. I am 22 years old and have complex partial
seizure disorder but I have been seizure free for over two years
finally. I recently got my drivers permit, but I am still kinda scared
about driving, even though I know I am not having seizures.

new member

2005-03-19T03:29:06Z

I have been having seizers for about 5 years...had all the test ...they are talking about a VNS don't know if I want to do it or not..just have had such bad luck with all the drugs and test..had the probes in my brain and I yanked them out ..so they said that my only option is the probes or the VNS ...don't have seizers that often ..maybe 1 a week ...so done know what to do ..I know when they put the VNS in it stays even if I don't work ????

tretment for seizers

2005-03-18T02:09:05Z

have had seizers for 5 years ...i only can take lamical and
keppra....all the others make me sick one way or the other .have been
for the probes outside my brain 2 times they went in and did the probes
in my brain ..i riped out probes and don't remmber anything .also have
them try to put the probes in my jaws and that didn't work either they

Epilepsy advocates

2005-03-13T21:19:31Z

Does anyone know where I can find the website for epilepsy advocates?

sex

2005-03-10T00:49:55Z

I have been wondering if anyone that is on meds for seizures are having
trouble wih sex drive.I am 46 and since having the strokes and starting
the seizure mdication i hve been having a little problems in that
area.Is this normal?