Helping grandchildren with epilepsy
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Groups
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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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 New - Project Uplift
A community group to allow former UPLIFT participants to stay connected to one another.
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| 1 | 2 | ||
 EPILEPSY SUPPORT GROUP NORTH CAROLINA
NON PROFIT ORGAINZATION FOR EDUCATION, SUPPORT, AND CONVERSATION
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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 | 9 | ||
Parent with Child with Epilepsy,Dystonia, and Autism
Parent who child is suffering from these impairment and the effect on their quality of life
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| 1 | 4 | ||
| 4 | 25 | ||
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| 0 | 13 | ||
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 support group for individuals w/ epilepsy
talking about challenges faced by individuals w/ epilepsy and everyday challenges
| 8 | 24 | ||
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| 0 | 4 | ||
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| 2 | 1 | ||
why don,t they understand, I,m a person too
friends turn their heads,people stare and mean worlds get said
| 1 | 15 | ||
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 | 40 | ||
teenager driving
i need help i am going to be driving in a couple of weeks. and to be honest i am terrified
| 0 | 4 | ||
 Epilepsy Surgery Group
Know that you are not alone, we will walk you through every step from pre-surgery to post-surgery
| 7 | 43 | ||
| 0 | 4 | ||
| 0 | 6 | ||
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.
| 23 | 41 | ||
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 | 25 | ||
| 0 | 3 | ||
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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 | ||
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Hard Time Adjusting
I'd like for people to feel comfortable discussing and helping others feel more comfortable about issues with epilepsy
| 3 | 22 | ||
 | 1 | 7 | ||
| 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 | 15 | ||
| 0 | 3 | ||
| 1 | 3 | ||
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| 4 | 5 | ||
| 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 | 18 |
Group Activity
 ankita... New - can seizures be controlled through psychlogical treatments
do u think that seizures can be controlled through psychological treatment?
i think yes...because many diseases in our bodies starts psyclogically,which finally lands up into a disease.
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twaiku New - 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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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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joyjohn New - 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... New - 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... New - 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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 Emilie... New - Dr appointment tomorrow
My Miss Emilie has yet another appointment @ Valley Childrens Hospital in Madera, Ca. tomorrow to get a referral to UCLA, thank goodness it's about time.....I think she will do so much better @ UCLA........Love my Emilie!!!
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sunsta... New - need a neurologist/epileptologist in IA
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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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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 Sugaah... New - 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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nshewey New - 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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 kdredske New - How important is recognition?
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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 gph |
mackerman New - 3yr old Daughter just diagnosed with Nocturnal Frontal Lobe Epilepsy
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
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?
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
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
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
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
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
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
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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 ayouch New - New to the Board, New to Seizures, Totally Baffled
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 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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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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 phylis... Epilepsy Bill Of Rights
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... |
phylis... |
Librar... New and not sure what is wrong with me
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... Experience with docs. Good or bad?
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... Event suggestions for Epilepsy Awareness Month (November)?
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 Am I having a partial seizure?
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 Here!
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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 Roxanne D WHAT CAN WE DO TO BRING MORE ATTENTION TO THE EPILEPSY FOUNDATION IN NC
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... Epilepsy Drug Impairs Baby's Intelligence
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... MSG: Dangerous or Deadly?
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 ... 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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 NEAD S... When epilepsy diagnosis is changed to NEAD
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!
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
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
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
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
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
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
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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