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Groups
Search Groups
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
| Discussions | Members | |||
|---|---|---|---|---|
 New - Treating Depression with Epilepsy
| 0 | 2 | ||
| 0 | 1 | ||
 | 0 | 3 | ||
| 0 | 11 | ||
| 0 | 2 | ||
 | 1 | 1 | ||
| 1 | 2 | ||
 Project Uplift
A community group to allow former UPLIFT participants to stay connected to one another.
| 1 | 1 | ||
| 1 | 5 | ||
 EPILEPSY SUPPORT GROUP NORTH CAROLINA
NON PROFIT ORGAINZATION FOR EDUCATION, SUPPORT, AND CONVERSATION
 | 1 | 4 | ||
Community Feedback on Proposed New epilepsy.com Feature
This group is for anyone who uses epilepsy.com and is a member of our community who would like input into new features and functionality on the website.
| 2 | 11 | ||
Parent with Child with Epilepsy,Dystonia, and Autism
Parent who child is suffering from these impairment and the effect on their quality of life
| 1 | 5 | ||
 | 1 | 4 | ||
| 1 | 9 | ||
| 4 | 38 | ||
 | 0 | 4 | ||
| 0 | 1 | ||
 | 0 | 5 | ||
| 0 | 16 | ||
 | 0 | 4 | ||
 support group for individuals w/ epilepsy
talking about challenges faced by individuals w/ epilepsy and everyday challenges
| 10 | 31 | ||
 | 2 | 19 | ||
| 0 | 4 | ||
| 0 | 20 | ||
| 3 | 4 | ||
why don,t they understand, I,m a person too
friends turn their heads,people stare and mean worlds get said
| 2 | 17 | ||
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...
| 5 | 47 | ||
teenager driving
i need help i am going to be driving in a couple of weeks. and to be honest i am terrified
| 0 | 5 | ||
 Epilepsy Surgery Group
Know that you are not alone, we will walk you through every step from pre-surgery to post-surgery
| 7 | 49 | ||
| 1 | 5 | ||
| 0 | 7 | ||
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.
| 24 | 48 | ||
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 | ||
| 2 | 29 | ||
| 0 | 3 | ||
 | 0 | 2 | ||
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 | 2 | ||
| 1 | 7 | ||
| 0 | 1 | ||
 | 2 | 20 | ||
Hard Time Adjusting
I'd like for people to feel comfortable discussing and helping others feel more comfortable about issues with epilepsy
| 3 | 28 | ||
 | 1 | 8 | ||
| 0 | 2 | ||
 | 6 | 6 | ||
 want to be in love with epilepsy
a group to find others like you and how it is to date with epilepsy
| 4 | 17 | ||
| 1 | 3 | ||
| 1 | 3 |
Group Activity
 heayacap New - tired of it
Ever just fall like a normal person? My family freaks out every time I have an accident and no one is around. "Are you sure it wasn't a seizure?" They panic when I hike by myself, go for a bike ride or a drive (which I can't do anymore), whatever. Things...
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 farrarch New - Paying for medication and treatment, where do I go now?
I have no insurance, and every time I try to get it the price goes way way up when I tell them I have epilepsy. I have a job, but work just enough not to get benefits. You now how expensive some medication can be, and neurology apts are not cheap either. ...
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 epi_help |
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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 imlovi... |
jmantay New - DMV Evaluation for Licence Revocation
I have experienced 2 seizures once in Julie 2008 and 2nd this past July 2009. My Neurologist legally has to report me to the DMV. I'm concerned about the review process and what type of questions I will be asked. Is there helpful answers I would give?? ...
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smartinez New - what are seizure triggers
My 4 yr old son was just diagnosed with Rolandic Epilepsy. I witnessed him have a grand mal seizure and I am terrified of witnessing another episode. He loves watching TV and playing video games but I have heard that these might be triggers. Does anyone know...
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smartinez New - what are seizure triggers
My 4 yr old son was just diagnosed with Rolandic Epilepsy. I witnessed himhave a grand mal seizure and I am terrified of witnessing another episode. He loves to watch TV and play video games but I have heard these might be triggers. Does anyone know of any...
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 david 59 New - creativity
my brain has become almost useless relating to designing, and being confidently creative since 3 grand mal szs, almost 3 years ago. i have just begun depakote, to come off of keppra, which i have been on since feb 2007. any relationship between these drugs...
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alexmom New - 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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 Colina New - A new "what's the point"
Last entry Jan 09
Unanswered as many previous ones. Is this group covered in dust on a shelf with all the other unused groups where people are being ignored?
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sarah123 New - more talk on my pregnancy
i havnt wrote in ages and just for anyone who wanders on here in the same situation as me...
i am around 35 weeks pregnant and everything is great so far. i had 3 ultrasounds which all were good and the doctor said everything is good so far and shouldnt...
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 steve14 New - Hello I am new here
Hi, I am new to this site today, have been scanning the net for months but never actually gone ahead and joined any group until now.
I am 31 and from London, although I now live in Hertfordshire following getting married in 2005. I thought I would...
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mask_t |
ksage New - Academic Instruction Strategies for students with Absence Seizures
I am a fifth grade teacher with a student who has been diagnosed with Absence Seizures. In the past, she has been on medication; however, at this point she is not.
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 lisam1... New - 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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edhryb New - Keppra and Trileptal seem to have stopped working. Any thougts?
Having trouble with my daughters seizures again. Not sure if it was the H1N1 shot or trying to wean her off trileptal, but we can't seem to break them. She went 3 days without and now she has already had 3 tonight. We're on 1750 daily on keppra and 600...
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 melisssa |
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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melisssa |
melisssa |
 George R New - 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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ew20611 New - 9 months seizure free - sleep overs?
My daughter is 6 and is on Keppra for TC seizures. She has been seizure free for 9 months (knock wood). She has been invited to a sleepover birthday party. I don't know what to do. She has never had a seizure at night. But I feel very anxious about it. But...
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lsierens Driving with Epilepsy
Please see my recent comments posted on my blog. I am looking for feedback concerning this issue...positive or negative.
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 Theresia 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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natty0408 Hi, I'm new
Hi, my name is Natalie and I just started coming onto this site. I decided I needed to get in contact with others with epilepsy because lately I have been feeling so depressed. I've known I have epilepsy for about three years now but it's getting very hard...
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tiredo... |
 mystic... Gastic Bypass and Seizures ?
I had gastric bypass in 2002..all has gone well except for an ulcer that is cleared up. Loving it! Now I'm having seizures, one for sure, possibly a second and third one. Still being diagnosed. I'd like to hear more bout this subject. Never connected the...
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 caregi... Im a Wife to a Husband with Seizures...looking for others who struggle daily
Hello everyone
Im a wife to a husband who started with E. 4 years ago this past February 14th....6 months after we were married.
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 Omega Honey, we need to talk... without triggering seizures.
How can partners talk to each other? When the stress of talking through problems with your partner triggers epileptic seizures, what can you do?
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Chriss... |
MegM Fear of Depakote
Do you have to medicate absence seizures?
My son, 5.5, was diagnosed with Childhood Absence Epilepsy this summer. Reluctantly, I gave him Zarontin. Eleven days later, he had a drug reaction (rash). Now the ped-neuro wants me to give him Depakote. But...
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 Susumarie |
josiesmum New Here- 2.5 year old, Helmet? What do I tell her?
Hi there. I have a 2.5 year old little girl who is still in the process of getting a defined diagnosis, current thought is that it is MAE.
Anyhow, she is having drop seizures and they are progressing to the point where I think she may need a...
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 Sugaah... Lost my teaching job due to use of Seizure alert/mobility dog
Sept 29, 2009 Time: 919pm Central
Hi All:
I would like to thank the person who created this group I appreciate all who know how to use this site better than I.
I have battling a discrimination case against my employer...
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 krowlyk question for breastfeeding moms
I am wondering if anyone has noticed a pattern of seizures while breastfeeding.
My daughter has had three long complex partial seizures, each about a month apart, and I'm wondering if it could have something to do with my monthly cycles,...
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 phylis... How long have you gone without a seizure?
Or did you think you were seizure free? Well that was me...
I had epilepsy for 22 years. Then another 22 years rolled by without anoher seizure. Home free, right?
WRONG.
15 months ago, I had a drug related seizure that was the mother of all...
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joyjohn Keppra
I just found good resource for generic keppra. I would like to share that information with you. http://www.internationaldrugmart.com/Keppra.html you can find full info on the side effects and various drugs that interact and increase the intensity of the side effects.
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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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 befree Complex partial seizures, temporal lobe
It seems I have been having almost non stop seizures since Aug, and haven't even been myself according to my family also. The Dr did not see a seizure on my EEG but the Tech. was very alarmed at my response to patterns so she pushed me to get the Dr to do...
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nshewey need a neurologist
I've been searching pretty much everywhere on the internet looking for help. I am on topiramate right now and was told by 2 neurologists that I should just give up the idea of getting pregnant at all since I cannot be off it. I need a third opinion since...
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 sunsta... my brother has seizures too
i have had tonic-clonic seizures since i was 7, after the 2nd one when i was 8 i went nearly 4 yrs seizure free and the had a seizure a few mths after turning 12, then i started having them yrly, within the last yr i started having them every few mths (currently...
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twaiku new to epilepsy.com
Hi. My daughter has complex partial seizures. She used to be on carbamazepine but we've recently switched over to clobazam. Does anyone have information/experience with clobazam? We're still pretty new to the seizure world.
Any info is appreciated.
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worry man I'm BACK
Hi Everyone,
Sorry that I haven't been around, but the computer was down and I has to it in the shop. I has trouble w/my seizures condition and trouble w/the doctors proving to them that I wasn't faking it. But that wittness...
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Connie... Lamictal while pregnant
Congrats on your pregnancy!
I love Lamictal for both every day use and pregnancy. I have never had any problems with this drug and it has allowed me to have 3 healthy babies.
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pamt Think I'm having seizures again. Need advice
I had my 1st seizure at age 16 in 1976. My mother believed I was taking drugs. No one believed me that I had not taken drugs. My EEG and other tests were normal. Years passed and it was eventually forgotten.
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 LCdanc... Lamictal
I have been taking Lamictal for about 8 years now and it has been extremely successful. I am on a pretty high does 900mlg. but my seizures are well controlled and eventhough i do get scared sometimes i havent had a sezire in about 6 years. I have also talked...
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joyjohn Seizure/Epilepsy medications
You can find the dosage information of all medications that are used for treating epilepsy /seizures at http://www.internationaldrugmart.com/drug-category/seizures.html and
http://www.internationaldrugmart.com/drug-category/epilepsy.html
You can...
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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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sunsta... could this be an aura?
i don't normally have auras, i just have a seizure w/o any warning. but lately i have occassionally been getting the sensation of intense anxiety, kind of like the feeling you get when something really bad has just happened (?- does that make sense; its...
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