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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.
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New - Project Uplift
Created by tamlin...at11/4/09 - 11:52 am The purpose of this Project Uplift group page is to offer participants of the Project Uplift program the opportunity to learn skills and gain additional information to help reduce depression and depressive symptoms associated with epilepsy
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New - SEIZURE FREE
Created by gracie...at11/3/09 - 3:19 pm Support Group for those living with epilepsy
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New - EPILEPSY SUPPORT GROUP NORTH CAROLINA
Created by Roxanne Dat10/9/09 - 2:35 am NON PROFIT ORGAINZATION FOR EDUCATION, SUPPORT, AND CONVERSATION
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Community Feedback on Proposed New epilepsy.com Feature
Created by kdredskeat9/30/09 - 3:51 am 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.
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Parent with Child with Epilepsy,Dystonia, and Autism
Created by TashaColeat9/24/09 - 9:01 am Parent who child is suffering from these impairment and the effect on their quality of life
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1 | 3 | |||
Fun and Games
Created by phylis...at9/22/09 - 5:05 am Brain games and challenges, word puzzles, humor
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3 | 18 | |||
Epileptic Postictal Psychosis
Created by Braved...at9/14/09 - 9:14 am For anyone with Postictal Psychosis associated with Epilepsy
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0 | 1 | |||
Epilepsy and Movies
Created by wendys...at9/10/09 - 3:53 pm have you seen a movie lately and it affected your epilepsy????
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kids and teens with epilepsy
Created by britta...at8/29/09 - 10:20 am kids and teens that have epilepsy
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what do you experience?
Created by kaylei...at8/12/09 - 7:28 am can our ecperience relate to any1 else?
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support group for individuals w/ epilepsy
Created by sunsta...at7/17/09 - 3:26 pm talking about challenges faced by individuals w/ epilepsy and everyday challenges
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2 | 16 | |||
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Lamotrigine memory loss
Created by superf...at6/17/09 - 2:29 pm Short term memory loss and other side effects
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Pregnant on Topmax
Created by sarah123at6/16/09 - 6:46 pm Talk about being pregnant on topamax, share expir. and helpful info. :D
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why don,t they understand, I,m a person too
Created by Angela71at6/3/09 - 11:51 am friends turn their heads,people stare and mean worlds get said
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Living a full life with Epilepsy
Created by Amazonat5/29/09 - 3:20 am 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...
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teenager driving
Created by babygi...at5/27/09 - 6:39 am i need help i am going to be driving in a couple of weeks. and to be honest i am terrified
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Epilepsy Surgery Group
Created by lisam1...at5/10/09 - 12:10 pm Know that you are not alone, we will walk you through every step from pre-surgery to post-surgery
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Parent of child with cerebral palsy and epilepsy.
Created by bunglemcat5/2/09 - 9:59 pm Child started off with Wests syndrome or infantile spasms and moved to further prolonged refractory epileptic seizures
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Epilepsy Friends .com
Created by Jonath...at4/28/09 - 9:39 am 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.
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Documentary television series
Created by My Las...at4/22/09 - 9:32 am "My Last 24" is a documentary series looking for people who are about to undergo brain surgery and wanting to document their journey
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Panayiotopoulos Syndrome/ Schooling Problems/ Keppra
Created by 4Jordieat4/20/09 - 2:14 pm Panayiotopoulos Syndrome/ Schooling Problems/ Keppra
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0 | 3 | |||
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Multiple Brain Surgeries
Created by Sarah524at3/17/09 - 3:26 pm Epilepsy is frustrating, but adding 2 failed brain surgeries to that is even more frustrating
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Non Epileptic Attack Disorder (NEAD)
Created by NEAD S...at2/27/09 - 11:41 am For those of us who have Non Epileptic Seizures, previously diagnosed as epilepsy
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1 | 7 | |||
0 | 1 | |||
Help my baby has siezures!!!
Created by Jenny_...at2/14/09 - 9:00 pm siezures can be confusing and scarry for parents
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Hard Time Adjusting
Created by adrakeat2/10/09 - 8:11 pm I'd like for people to feel comfortable discussing and helping others feel more comfortable about issues with epilepsy
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The Headache Group: Ictal Headaches
Created by phidippusat2/8/09 - 1:40 am Ictal Headaches and Cephalic Auras
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Surgery for Cortical Dysplasia causing epilepsy
Created by isabel...at1/31/09 - 8:59 pm Surgery for Cortical Dysplasia causing epilepsy
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Married With or To Epilepsy in TN
Created by timangelaat1/26/09 - 11:38 am How to help my spouse with my Epilepsy
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want to be in love with epilepsy
Created by breeze...at1/19/09 - 7:35 pm a group to find others like you and how it is to date with epilepsy
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Architects with epilepsy
Created by Cristi...at1/17/09 - 1:37 pm Topics related to capability to work like architecs and memory issues
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1 | 3 | |||
Michiganders with Epilepsy
Created by Kersty...at1/15/09 - 3:45 pm This group is for those living in Michigan who are living with epilepsy.
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Auburn Hills Group
Created by shiznitat1/10/09 - 7:01 pm To share thoughts, ideas, vents, happenings, workplace drama etc.
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Hampton Roads VA
Created by steele...at1/1/09 - 4:37 pm Anyone with Epilepsy living in Hampton Roads VA
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Paroxysmal hypnogenic dyskinesia
Created by kat60at12/17/08 - 12:03 pm suffering for 20 years with no diagnosis
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young adults(not teens) 21-25 yr olds
Created by majormanaat12/17/08 - 12:59 am were we whom are 21-25 can talk about things that pretian to us not older or younger pepole
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Eastern NC Epileptics
Created by Caroli...at12/14/08 - 9:34 pm Agroup for people in the eastern NC area who want to meet other epileptics near you
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gph New - Does anyone have seizures that last for days like me?
Created by gphat4/30/08 - 9:04 pm|124 Views|12 Comments |
mackerman New - 3yr old Daughter just diagnosed with Nocturnal Frontal Lobe Epilepsy
Created by mackermanat4/28/09 - 9:20 am|19 Views|2 Comments
I am looking for any answers or advice. My daughter has struggled with sleeping since she was 3 months old and finaly after looking for any help we could get we had her do a sleep study last Thursday. By Friday afternoon the neurologist called us with...
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ninabva68 New - Kids with epilepsy
Created by ninabva68at1/25/08 - 3:24 am|136 Views|11 Comments
Hang in there. All the parents that have kids with epilepsy. We have to hang together. The rest of the world cannot really understand how you feel when you hold your little shaking kid.
That said we need to remember many kids out grown epilepsy....
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kacierees New - Am I alone?
Created by kaciereesat4/30/08 - 8:26 pm|76 Views|8 Comments
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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soccr360 New - dating in your twenties
Created by soccr360at11/3/09 - 5:06 pm|1 View I would like to get you guys experience and advice on dating with this disorder especially in your twenties. The worries and thoughts that one feels before they want to try an date or ask someone out is double!!! How have you guys dealt with it or are...
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gracie... |
steve14 New - Hello I am new here
Created by steve14at4/15/08 - 4:25 am|100 Views|6 Comments
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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nandla... |
sunsta... New - need a neurologist/epileptologist in IA
Created by sunsta...at10/29/09 - 7:37 am|5 Views
does anyone know of a decent neuro/epileptologist in the iowa city,IA area that accepts iowacare patients? i'm looking for a neuro that can maintain a professional attitude who is not judgemental, abrassive, or rude; a neuro who listens to their pt w/o accusing...
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sunsta... New - need a neurologist/epileptologist in IA
Created by sunsta...at10/29/09 - 7:26 am|3 Views
does anyone know of a decent neuro/epileptologist in iowa city, IA that accepts iowacare patients? i'm looking for a neuro who isn't judgemental, who listens to what u say, doesn't argue w/ u, isn't abrasive, etc. any potentially helpful info is much appreciated....
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sunsta... New - need a neurologist/epileptologist in IA
Created by sunsta...at10/29/09 - 7:19 am|6 Views
Does anyone Know of a decent adult neuro/epileptologist in iowa city, IA that takes iowacare (some title 19 care providers accept iowacare)? i hate seeing the neuro i have know- she's rude, offensive, unprofessional, judgemental, and makes unsupported accusations...
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lsierens New - Driving with Epilepsy
Created by lsierensat4/18/09 - 2:58 pm|39 Views|7 Comments Please see my recent comments posted on my blog. I am looking for feedback concerning this issue...positive or negative.
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Jonath... New - Epilepsy Friends .com Oprah Talk About Epilepsy .com Sites
Created by Jonath...at10/26/09 - 11:02 am|2 Views
I urge everyone to join our Facebook group if you haven't already done so. Here's the URL: http://www.facebook.com/group.php?gid=51759117066 I also urge everyone to join the Facebook group Oprah Talk About Epilepsy .com. Here's the URL: http://www.facebook.com/group.php?gid=156464861079...
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kdredske New - How important is recognition?
Created by kdredskeat10/9/09 - 10:26 am|13 Views|1 Comment
I'd like to hear from you in the community about what you think of the idea of getting points for your participation in the community and with Epilepsy Therapy Project who provides the epilepsy.com website.
Do you like the idea of getting points that...
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ayouch New - New to the Board, New to Seizures, Totally Baffled
Created by ayouchat9/5/09 - 6:45 pm|17 Views|2 Comments
I am new to the board and found this group while checking out the list of all groups. I am sorry to see there is no conversation here! If anyone is still actively checking this group, I would love to talk with you. I am 40 years old and had a RNY bypass...
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kieran New - Epilepsy
Created by kieranat5/28/08 - 6:43 pm|23 Views|3 Comments 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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MegM New - Fear of Depakote
Created by MegMat9/11/09 - 8:06 pm|31 Views|6 Comments
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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phylis... New - Epilepsy Bill Of Rights
Created by phylis...at10/14/09 - 8:45 am|8 Views
The Bill of Rights for People Living with Epilepsy was created for people living with epilepsy by people living with epilepsy and was spearheaded by The Epilepsy Foundation in conjunction with many concerned contributors.
If you don’t know...
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phylis... New - Katie Couric discusses Epilepsy on 60 Minutes 10/25
Created by phylis...at10/13/09 - 3:02 pm|11 Views |
phylis... New - Comprehensive list of GOOD Neurologists, Epileptologists, Neurosurgeons, Pediatric Docs
Created by phylis...at10/13/09 - 11:56 am|15 Views |
Librar... New - New and not sure what is wrong with me
Created by Librar...at10/13/09 - 11:25 am|9 Views
I have been threw alot in the last few years with my health. I am now experiencing what my doctors think are seizures however since I have not had one on a EEG I do not have diagnosis yet. My history start 10 years ago when I had a csection for my son...
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phylis... New - "E" is for epilepsy, EEG and electrode...
Created by phylis...at9/22/09 - 5:09 am|25 Views|7 Comments
"E" is for epilepsy, EEG and electrode...
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phylis... New - Experience with docs. Good or bad?
Created by phylis...at10/12/09 - 10:20 am|8 Views
Fortunately my first neurologist was a wonderful man. He was head Neurologist at NYU Medical Center...yet he took the time to explain everything to me and try to ease my shock. His name was Dr. Ransohoffer, but I called him "Uncle Joe", because...
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phylis... New - Event suggestions for Epilepsy Awareness Month (November)?
Created by phylis...at10/11/09 - 11:08 am|5 Views
I'v been trying to think of ways to raise funds for my local Epilepsy Foundation chapter during November's Epilepsy Awareness Month.
Here are the ideas I've come up with so far...
An informal dinner where each person is asked to bring a $25 check...
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RobinLynn New - Am I having a partial seizure?
Created by RobinLynnat10/11/09 - 7:25 am|15 Views I have been having some "Blackout spells" and beginning to get a little concerned. The first couple times I hear a loud roaring and then things go black and I wake up on the floor. only last a few seconds. The last one I had when I was coming...
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brewersal New - New Here!
Created by brewersalat1/8/09 - 3:12 pm|49 Views|4 Comments Hi! Just found out my twin girls, Claudia and Caitlin, now 10 have Dravet's syndrome. They've had diagnosis of epilepsy since four months old, global developmental delay, since fourteen months, autism since they were seven but we knew that way before and...
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phylis... |
Roxanne D New - WHAT CAN WE DO TO BRING MORE ATTENTION TO THE EPILEPSY FOUNDATION IN NC
Created by Roxanne Dat10/9/09 - 5:50 pm|8 Views THE EPILEPSY FOUNDATION OF NC HAS HAD BUDGET CUTS AND IS SHORT STAFFED. THEY NEED ALL THE HELP THAT YOU ARE WILLING TO GIVE.
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phylis... New - Epilepsy Drug Impairs Baby's Intelligence
Created by phylis...at10/9/09 - 3:53 pm|1 View
According to HealthDay News -- When a pregnant woman takes the epilepsy medication valproate, her child's intelligence may be lowered for at least three years, and possibly beyond, a new study suggests.
Reporting in the New England Journal of Medicine,...
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phylis... New - MSG: Dangerous or Deadly?
Created by phylis...at10/8/09 - 8:41 am|5 Views
You probably already know that MSG is a dangerous trigger for seizures. But I just read an article in http://www.vitalearth.net/MSG.html that is downright scary. According to their report:
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Marge ... New - Infantile spasms
Created by Marge ...at1/29/09 - 11:48 am|29 Views|5 Comments This is my first try on this site. Is there no one out there that is dealing with infantile spasms?
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NEAD S... When epilepsy diagnosis is changed to NEAD
Created by NEAD S...at2/27/09 - 12:22 pm|25 Views|4 Comments
I was diagnosed as having epilepsy at 18, and went along with it. Took all the med's, they didn't work. :-( They kept changing them, altering the doses, anything to try and control my seizures. Still, nothing worked.
Then in 2008 - 20 years later -...
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phylis... EATING WELL IS THE BEST REVENGE!
Created by phylis...at10/6/09 - 8:03 am|3 Views It is said that “living well is the best revenge”. And so is eating well, when you want to beat epilepsy or at least reduce your seizures and the amounts of medication needed.
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TenAlive Recently Diagnosed
Created by TenAliveat10/5/09 - 7:36 am|14 Views Recently I was daignosed with epilepsy. It's hard for me to describe what exactly happens when I have an episode. As I do not lose full consciousness. It all started last December when I had my first episode. I was dizzy, confused and mentally slow for two...
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epi_help |
phylis... Coconut Oil
Created by phylis...at10/4/09 - 10:27 am|3 Views
Who would have thought that yummy coconut oil could help and supplement the Ketogenic Diet?
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alexmom intractable seizures in 2 year old
Created by alexmomat2/27/09 - 4:43 pm|26 Views|2 Comments 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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Kelly H. Teen epilepsy
Created by Kelly H.at7/5/09 - 10:30 am|16 Views|2 Comments My 16 year-old daughter recently started having seizures again after being seizure free for 10 years. She has been off Phenobartiol for 9 years and has now been put on Keppra and Limictal. We will be weaning her off keppra after the Limictal is therapuetic. ...
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marlon... benign epilepsy and daytime seizures
Created by marlon...at10/1/09 - 10:37 am|2 Views
hello,
this post is in regards to my 7 yr old son. he began having what seemed to be odd temper tantrums when he was almost 3 yr old. i took him to his pediatrcian who kind of smirked when i explained my sons posturing or stiffening of his body during...
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shelly... A major impact
Created by shelly...at9/30/09 - 8:12 pm|6 Views Hi guys, Sorry I have been so long on being on. I have had a lot of difficulty going on. I don't even remember what I mentioned last time on. But anyways, We learned that my little brother had leukemia and eventually we found a stem cell that matched him so...
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Sugaah... Lost my teaching job due to use of Seizure alert/mobility dog
Created by Sugaah...at9/29/09 - 8:01 pm|6 Views
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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bookbabe nocturnal seizures - how do you know you are having them?
Created by bookbabeat2/20/09 - 2:14 pm|55 Views|6 Comments
This is perhaps a silly question, but how do you know if you are having nocturnal seizures if you live alone? I realize that if I wake up on the floor with a bloody nose it would be a good clue, but... I have TLE with one grand mal 15 years ago. Sometimes...
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Jonath... Discrimination
Created by Jonath...at5/9/09 - 7:50 pm|26 Views|3 Comments 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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phylis... |
bookbabe does anyone experience irritability as a symptom of temporal lobe epilepsy?
Created by bookbabeat7/10/08 - 5:28 pm|148 Views|19 Comments
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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phylis... FREE Epilepsy Prescription Drug Assistance!
Created by phylis...at9/27/09 - 7:42 am|5 Views This is valuable information that no one should be without – regardless of their disease, disability or condition. Below are five key resources that can help you get the meds you need at little or no cost. Keep this information handy and please, pass...
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scared... scared to have a baby
Created by scared...at9/26/09 - 6:32 am|4 Views
I am 29 years old. I found out that I was epileptic when I was 16. It is well under control. I have only had 5 grand-mal seizures.
However, right now I am at the point in my life that I am itching to start a family. I am on topamax 400mg. I went to...
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kjbosman |
sdeas Lamictal
Created by sdeasat4/13/08 - 7:43 am|105 Views|7 Comments
I've been taking Lamictal for 7 years but I've never taken it as a monotherapy. At first I was taking it with Dilantin. Then Keppra got added to the mix. I now take 300mg BID with Keppra and Topamax.
I never noticed any changes with mood, behavior,...
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imlovi... |
