Non-Lesional Surgery Advice
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To find a group or topic of interest, enter a username or keyword in the box below.
To find a group or topic of interest, enter a username or keyword in the box below.
Get and stay connected with other epilepsy.com community members who share your interests, concerns and passions. Create a virtual meeting place and deepen your connections using the Community Event Calendars, Group Discussions and Shared Member Blogs. Below, you can see the most recent Groups, and the latest activity within the Group Discussions. Browse around and if you don't see a Group you are looking for, log-in and click "Start a New Group." Your Group can be open to the public or private (by invitation only). There is no limit to the size of your Groups or what topics your Groups are based on! If you are not logged in, register now! Learn more about joining and participating in Groups in our Groups Help Section.
Group Index
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why don,t they understand, I,m a person too
friends turn their heads,people stare and mean worlds get said
| 1 | 5 | ||
Living a full life with Epilepsy
Living life with e requires many of us to give up many things - sometimes things that we love most. In this group, lets come together and find ways and share experiences on how we overcame the obstacles and made our life our own. How we battled e to retain...
| 1 | 14 | ||
teenager driving
i need help i am going to be driving in a couple of weeks. and to be honest i am terrified
| 0 | 2 | ||
 Epilepsy Surgery Group
Know that you are not alone, we will walk you through every step from pre-surgery to post-surgery
| 7 | 20 | ||
| 0 | 3 | ||
| 0 | 3 | ||
Parent of child with cerebral palsy and epilepsy.
Child started off with Wests syndrome or infantile spasms and moved to further prolonged refractory epileptic seizures
| 0 | 1 | ||
 Epilepsy Friends .com
Epilepsy Friends is a group focused on sharing information about epilepsy to better educate and help individuals who are affected by or curious about epilepsy.
| 5 | 24 | ||
Documentary television series
"My Last 24" is a documentary series looking for people who are about to undergo brain surgery and wanting to document their journey
| 0 | 2 | ||
Panayiotopoulos Syndrome/ Schooling Problems/ Keppra
Panayiotopoulos Syndrome/ Schooling Problems/ Keppra
| 0 | 2 | ||
| 1 | 12 | ||
| 0 | 2 | ||
 | 0 | 1 | ||
Multiple Brain Surgeries
Epilepsy is frustrating, but adding 2 failed brain surgeries to that is even more frustrating
| 0 | 4 | ||
.JPG "NEAD Scotland (With text - Third).JPG") Non Epileptic Attack Disorder (NEAD)
For those of us who have Non Epileptic Seizures, previously diagnosed as epilepsy
| 1 | 1 | ||
| 1 | 6 | ||
| 0 | 1 | ||
 | 0 | 8 | ||
Hard Time Adjusting
I'd like for people to feel comfortable discussing and helping others feel more comfortable about issues with epilepsy
| 0 | 11 | ||
 | 1 | 6 | ||
| 0 | 2 | ||
 | 6 | 5 | ||
 want to be in love with epilepsy
a group to find others like you and how it is to date with epilepsy
| 2 | 11 | ||
| 0 | 2 | ||
| 1 | 2 | ||
| 0 | 1 | ||
 | 0 | 1 | ||
| 3 | 4 | ||
| 0 | 2 | ||
young adults(not teens) 21-25 yr olds
were we whom are 21-25 can talk about things that pretian to us not older or younger pepole
 | 2 | 16 | ||
 Eastern NC Epileptics
Agroup for people in the eastern NC area who want to meet other epileptics near you
| 2 | 4 | ||
 | 2 | 6 | ||
| 1 | 4 | ||
| 2 | 33 | ||
| 2 | 5 | ||
| 0 | 2 | ||
| 1 | 13 | ||
| 5 | 21 | ||
| 35 | 110 | ||
| 0 | 11 | ||
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| 0 | 24 | ||
 | 2 | 11 | ||
| 2 | 17 | ||
 | 4 | 4 |
Group Activity
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 sarah123 New - a interesting website check out
http://www.bcepilepsy.com/files/PDF/Pregnancy_and_the_Mothers_Health.pdf
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sarah123 New - the ob opp.
i went to the ob and he said i was healthy. :)
he said to continue taking folic acid and a pretatal vitamin. 5mgs of folic acid. (not just 1mg) i think i was taking 3 or 4 or the 1 tablets because i knew i was susposed to take more than the average...
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k9zeusmom New - Work issues
Hi Folks! I am a new post-er, as I have only recently been diagnosted. I'm in my 30s and have also just gotten the job I have worked towards my entire life.
Problem is... it's not going well. I did tell my boss of my diagnosis -- I kind of had...
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 Colina New - Baby talk
Hello everyone! :)
First...Congrats to Sassy being with child! "With child" how old is that? lol
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Jonath... New - Side Effects
Many people suffer from the terriable side effects of anticonvulsants. Do you have any stories about those experiences to share?
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Jonath... New - Seizure Triggers
Most people who live with, or around others with, epilepsy know that
certain things can sometimes trigger seizures, dizzy spells, auras,
etc... What are some of the triggers that you have noticed?
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Marge ... New - Infantile spasms
This is my first try on this site. Is there no one out there that is dealing with infantile spasms?
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 lisam1... New - Give a short bio of yourself and your epilepsy
I'll start this off to get things rolling. My name is Lisa-Marie and I suffered with petit mal epilepsy for 31 years. I was having hundreds upon hundreds of seizures every single month with no relief at all from medications.
In 1993 I was referred...
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 Susumarie |
 woodland New - What's your previous experiences with dating?
The biggest problem that I have is knowing when to tell her. If I say something somewhat immediately, it gives the impression that I am looking for sympathy. If I wait, then she tends to be upset and believes that I was "holding out" or keeping...
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 kacierees New - Am I alone?
Well where do I start... my fiance has epilepsy and it is all so new and scary to me.
We met a little over three years ago, in college. Everything was moving along perfectly. I graduated and began teaching and coaching while he finished up his...
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 slamey28 New - Doctor Appointment Tomorrow... (PIOG)
Hi everybody, I'm brand new here and I'm wondering if anyone has any tips on what to ask the neurologist tomorrow. My 5 year old son, Dylan, was recently diagnosed with a seizure disorder and we found out on Friday that his MRI showed a 3 cm cyst in his...
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Gwendo... New - Lamotrigine, effects?
Hello, I'm 18 years old and have had epilepsy for 5 years now. I have been on lamotrigine for about a year and have started having trouble with sleeping. Has anyone else had this problem?
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 superf... New - I know what your going thrugh
Hi angela
I kinda know what your going through. I am currently living in Serbia, a country with probably THE worst understanding of epilepsy, the stigma that goes with it here is unreal, you are treated more or less as a freak of nature, in some parts...
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 Theresia New - PMT / PMS and seizures
HI to the other women.
I would be very interested to know whether other women have increased risk of seizures around certain times of the menstrual cycle....and any ways that others try to manage this...
For me, I am much more likely to have...
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 ROCKNROLL |
ldybgdawn |
 emartin74 New - Hi everyone
Hi everyone, I'm in the Raleigh area (Cary, actually) - so I'm probably closer to being in central NC than Eastern NC - but this is the only NC group I can find on here for people with epilepsy. I have had epilepsy for 30 years (since I was 5) and it was...
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amysmi... New - Medication ... no other alternatives??
I am a mother of a 2 1/2 year old. He has had 3 seizures over the last 9 months. They diagnosed them as febrile seizures. We pushed for an EEG, and it came back as abnormal. We met with the PED Neurologist today, they are ordering an MRI next month. ...
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Nedajoon New - cranial osteopathy & seizures
my 8 1/2 year old daughter has had intractable seizures for the past 3 years. Recently an osteopath said that cranial osteopathy may help. Does anyone know about this?
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kellbe... New - Simple Partials & Deja Vu
Hi All,
I am 28 years old and began having partial seizures early August 2008 due to an epidermoid tumor. The seizures led to an MRI where the epidermoid was found. I had an EEG which one neurologist read here in Alaska stating that epileptiform...
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MissyJ New - Lamitrogine and hair loss
I am a 24 yr old female, I have been on anti-seizure meds for about 20yrs, my seizures are very minor. I have been on 200mg/2 times a day of Carbomazipine (Tegrotol) for most of those 20 yrs. but after having a breakthrough seizure after 18yrs of being seizure free.
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joyjohn New - Medications for Epilepsy
For medications used for treating epilepsy are available at discount price from International Drug Mart. You can find more info about the medications and online pharmacy at International Drug Mart (http://www.internationaldrugmart.com/)
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alexmom intractable seizures in 2 year old
Hi everyone. i have a two year old who has seizures that have not been controlled by the past three medicines: trileptal, keppra and zonogram. The doctor is guessing Dravet syndrome. My son is 2 years old and has about four seizures a day now and has delays...
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 danies... The Body
I was on lamictal and zonegran for seven years or longer then got taken off of it. I am now on keppra xr keppra and banzel. I was on the keppra while on the others an getting put on banzel while taken off zonegran.
Then I had tooth go bad...
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slamey28 Doctor Appointment Tomorrow... (PIOG)
Hi everybody, I'm brand new here and I'm wondering if anyone has any tips on what to ask the neurologist tomorrow. My 5 year old son, Dylan, was recently diagnosed with a seizure disorder and we found out on Friday that his MRI showed a 3 cm cyst in his...
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Jonath... Discrimination
People often put all epileptics into one single category. That category
includes having a high frequency of seizures, not being able to hold a
full time job, not being able to drive, having to work in a safe
environment, and the list goes on. The bottom...
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 Michaeldb Erectal dysfunction
As a new member in this group I would like say Hello to everybody here. And I would like to start a discussion that your doctor may not start on his own initiative...
For men, temporal lope epilepsy itself is often accompanied by low or missing sexual lust...
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 President |
dubble... Garrett's Adventures with Epilepsy
hello my name is Crystal, I have a 5 yr old son, Garrett, who has had seizures since he was 27 months old, his first seizure lasted well over a hour, one of the scariest days of my life, the doctors wrote it off as a febrile seizure, no questions answered.
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 gph |
bookbabe does anyone experience irritability as a symptom of temporal lobe epilepsy?
Up until my TLE diagnosis, my periodic symptom of irritablility (not being cranky, more like stimuli or small annoyances make me feel like screaming) were considered to be symptoms of my bipolar II disorder. My neurologist indicated that they could be TLE...
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epi_help Resources for Epilepsy Surgery
HI everyone,
Just to let everyone know that there are a few other surgery groups on epilepsy.com, so check them all out. There's also information written by professionals and the editorial team here on the site - look in the Treatment Section in the...
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 George R Disappointed With Your Surgery?
As the public becomes more aware of surgical techniques being introduced that ideally will eliminate or reduce the number and intensity of seizures that folks with epilepsy might have, many questions are arising. But I feel that far too few of them are being...
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lisam1... Gamma Knife Radiosurgery
I'd like to hear from anyone who underwent Gamma Knife Radiosurgery for their epilepsy and I'd like to know if it was successful
Lisa-Marie
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lisam1... RNS surgery (responsive neurostimulator system)
I'd like to hear from anyone who has undergone either the Medtronics or NeuroPace RNS device to control their seizures.
Lisa-Marie
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lisam1... Vagus Nerve Stimulator surgery
I'd like to hear from anyone who has undergone or is about to undergo VNS surgery. I'm very interested in hearing your story, your fears, anything like that.
Lisa-Marie
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lisam1... Brain surgery
I'd like to hear from anyone who has undergone, or is about to undergo brain surgery for their epilepsy.
Lisa-Marie
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 pbugbee |
zetalov2 new
I have been epileptic since age 7, am 28 now. I just want to chat, I have new concerns and would like to share and compare. Thank you.
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 Angela71 I,m trembling, help
I was diagnosed at 12 _ Grandmal seizures. but they would come1 or 2 times a year..........I got a bad attitude in school, it got me through. But I,m 37 now and everythings down hill. I feel terrible all the time. My thoughts give me headaches alot. My...
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Jonath... Foods That 'Bother' Me
Many epileptics notice that certain foods 'bother' them. They get
auras, headaches, migraines, seizures, etc... after eating or drinking
them. What are some of those items that bother you or another?
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 JayBri... Introduce Yourself
I just thought we might want to inroduce ourselves, so if you feel like it, here's the place to do it! I'll start.
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jskelding I need to find a PED Nuerologist doctor ASAP!
My son is 8, and has had over 30 seizures in the last 7 weeks.
he is on topomax, a very high dose, and i am not comfortable at all with his doctor as he is only a part time PEDS neuro.
we live in toledo, oh and will travel anywhere for the...
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 alannah alcohol
This may sound silly, but i am scared to drink. the thing is i haven't had a seziure in 5 years, and as you all know it is a horrible thing. It's kind of stupid that i am still scared, but with having 15-20 min grand mal sezuires it's kinda hard to forget....
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 Colina2 Parent chat
Hi everyone.
I wanted to invite you all to join in on a weekly parent chat Thursday evenings from 9-10pm EST. Hope to see you there!
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Amazon AEDs and Pregnancy
Hi All,
I am 28 years old and i have a question for all those ladies out here who have successfully had babies while on AEDs. If you take AEDs while pregnant, does your baby run the risk of inheriting epilepsy?
I am not sure if i got epilepsy...
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knight... New here also
I like alot of people here am also new. I have been looking for awhile to find people who truly understand this thing. I don't know anyone in my town who has seizures and my family understands but doesn't really understand. I have had seizures for 12 years...
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kieran Epilepsy
I was diagnosed with epilepsy just over 2 years ago. my neurologist diagnosed me with juvenile myoclonic epilepsy a few months ago. i have been taking lamictal for just over a year and a half now and my dosage has been increased several times over that timespan....
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