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DiscussionsComments
My Epilepsy Diary Help & Feedback
Share questions, concerns about our new Epilepsy Diary here!
24
Epilepsy Journal: Insights & Strategies
A place to get information and share information and ideas on the new Epilepsy Journal that is going to be published by epilepsy.com. This forum includes information on how to volunteer to be a part of it. THIS FORUM IS NOT FOR POSTING YOUR PERSONAL EPILEPSY STORIES.
546
Fundraising
A place where you can find and share information on how to help support epilepsy.com and research for new therapies for people living with epilepsy. Brainstorm and support the Epilepsy Therapy Project who brings you epilepsy.com.
1333
New to Epilepsy.com
A place for newcomers to the site. Stop by and introduce yourself.
20109075
Living With Epilepsy - Adult Issues
A place to share questions, concerns, and challenges that adults with epilepsy may face in understanding, managing and living with seizures.
276218429
Living With Epilepsy - Youth Issues
A place to share questions, concerns and challenges in coping with children's seizures and life issues.
4812355
Diagnostic Dilemmas and Testing
A place to ask questions about EEG's and other tests and to share your experience with the diagnostic process.
6632945
Medication Issues
A place to share concerns, experiences and challenges about medications for seizure management.
185810757
Surgery Issues
A place to share concerns, experiences and challenges about surgical treatment and use of devices for epilepsy.
4392765
Complementary Therapies
A place to share concerns, experiences and challenges about alternative or complementary therapies.
1511124
Parent Group
A place for parents to learn and get support from other parents of children with epilepsy.
10004902
Families & Friends
A place for those who care for and about people with epilepsy - caring for yourselves as well as those around you.
6754096
Women With Epilepsy
A place for women - to share concerns, experiences, and support about issues unique to women with epilepsy.
6484026
Men With Epilepsy
A place for male bonding - to share concerns and experiences of being a man with seizures.
79590
Veterans with seizures
A place for veterans with seizures or family members to meet and share experiences and concerns.
532
Teen Group
A place for teens with seizures to talk with each other, share experiences and support, or just hang out!
2451487
Advocate for Epilepsy
A place to share concerns and strategies for making your voices heard about epilepsy.
62319
Insurance Issues
Concerns and strategies for accessing insurance and Medicare Part D
56220
Products, Resources, Helpful Links
Users are invited to share products, equipment, resources and helpful links that users may find interesting for people with epilepsy, loved ones, and caregivers.
84281
Corner Booth
A place to stop by, socialize and check in with each other. Kick back!
4213558
Creative Corner
Share your creative talents! A place to add your poetry, songs, writings for all to see. (Authors should be attributed properly!)
32119
Epilepsy.com Help
A place to ask questions about the site or to provide feedback to site administrators.
2571201

Forum Activity

 
1never...
1never...
New - I Have Epilepsy and I Hate My Life...
Created by 1never...at7/26/08 - 5:11 pm|1843 Views|188 Comments
Posted To: Medication Issues
Enough said.
maryem
maryem
New - VNS
Created by maryemat11/6/09 - 11:46 pm|2 Views
Posted To: Living With Epilepsy - Adult Issues
After 6 years and 5 different meds in 3 or 4 different series I am looking at VNS.  But how much does it cost an insursed person, in illinois with Blue cross blue shield?  About how much?  Or will insure even pay?  Is disability easy or hard to get with...
kmworden
kmworden
New - Switching from Keppra XR to Zonergan- tossing& turning
Created by kmwordenat6/10/09 - 7:48 am|24 Views|3 Comments
Posted To: Women With Epilepsy
I have been on Keppra and then Keppra XR for a little over a year.  Seizures started to get progressively worse post-pregnancy so I am switching to Zonegran.  I also take Klonopin which seemed to be helpful in working with the Keppra to manage my seizures. ...
brian ...
brian ...
New - kepra
Created by brian ...at1/23/06 - 5:45 am|18829 Views|83 Comments
Posted To: Living With Epilepsy - Adult Issues
does anyone know anything about kepra?...
kwety
kwety
New - thinking about surgery
Created by kwetyat5/24/07 - 8:35 am|3827 Views|61 Comments
Posted To: New to Epilepsy.com
Hi I'm 29 years old and have a congenit mal formation in my brain. I've had seizures(grand mal until I was 5, then none for 6 years then partial and absence until the age of 20. Then things got a lot worse I had dozens of partial...
jessic...
jessic...
New - Switching to Topamax from Depakote ER.. Advice?
Created by jessic...at7/18/09 - 10:41 pm|33 Views|5 Comments
Posted To: Medication Issues
I have been diagnosed with seizures for the past 16 years since I was 13 years old. I have been on Dilantin, Limictal, Depakote, Depakote ER, and Keppra. The only bad side effects from previous meds were protuding gums and the depletion of calcium from my...
filly150
filly150
New - Vimpat for Primary Generalized Epilepsy
Created by filly150at11/6/09 - 11:02 am|17 Views|2 Comments
Posted To: Medication Issues
Is anyone out there taking Vimpat for Primary Generalized Epilepsy?  If so, what kind of luck did you have with it.  I am just starting it as an add-on to Lamictal for Tonic Clonic Seizures.  My doctor says that even though it is uses for partials, that...
Rhiann...
Rhiann...
New - im 16, had epilepsy since 13 - looking for someone to chat to abo...
Created by Rhiann...at11/6/09 - 4:33 pm|7 Views
Posted To: Teen Group
basically my names rhiannon. i live in the UK, and im 16. i have grand mal, drop and petit mal seizures - and have also resently been experiencing hand twitches.   i would love to hear from anyone who wants to talk about it, been...
darina
darina
New - REAL?? Fake?? HELP MEE
Created by darinaat11/4/09 - 6:43 am|50 Views|5 Comments
Posted To: Diagnostic Dilemmas and Testing
HI im now 18 i started having seizures on the 5th may 2006 my first was in school i was on a bench i was really cold and it was near the end of the first break i remember going to sit on the bench thats about it. whilst sitting on the bench i passed out...
Skater...
Skater...
New - Please give me your input on my 9 year old son's symptoms
Created by Skater...at11/4/09 - 5:10 pm|28 Views|6 Comments
Posted To: New to Epilepsy.com
 My 9 year old son has Asperger's. His doctor tells me that this elevates his risks of comorbidity which could include seizures. Last year his teacher's noticed he was having many staring spells during school. I noticed them at home as well. A teacher thought...
aramey
aramey
New - Neurolosist Needed
Created by arameyat11/3/09 - 8:01 pm|36 Views|6 Comments
Posted To: Living With Epilepsy - Adult Issues
Hi,I am 20 years old and am moving to either Parker, Colorado or Woodstock, Connecticut in April of 2010 (not sure which state yet).  I was wondering is anybody could recommend a good neurologist in either of these areas as I have no idea where to start!!
phylis...
phylis...
New - Honor Epilepsy Awareness Month With YOUR Contribution
Created by phylis...at11/6/09 - 1:58 pm|4 Views
Posted To: Fundraising
Ironically, I heard on the news that the Juvenile Diabetes Philadelphia branch was moving to new quarters to house their expanded staff. At the very same time, our branch of The Epilepsy Foundation was in the process of laying off employees because of...
lisab
lisab
New - Deja vu
Created by lisabat4/5/05 - 5:00 am|2975 Views|66 Comments
Posted To: Diagnostic Dilemmas and Testing
Hi, my name is Lisa and this is my first time posting.  I am 39 years and a mother of two daughters.  About 18 months ago, I had two experiences of deja vu.  After the deju vu feeling passed, I had a strange feeling...
dfarrell
dfarrell
New - Faked seizures
Created by dfarrellat5/17/05 - 10:03 pm|2401 Views|104 Comments
Posted To: Corner Booth
kyrissa
kyrissa
New - Embarrassed
Created by kyrissaat11/5/09 - 10:04 am|53 Views|6 Comments
Posted To: Living With Epilepsy - Adult Issues
I know that I don't need to feel this way, but I am embarrassed to admit to others that I have seizures.  I am concerned that they will "freak out" like most of society does with epilepsy due to thier lack of control on situations.  I have also...
Ginger...
Ginger...
New - Changing prescription from Keppra to Dilantin
Created by Ginger...at11/6/09 - 9:51 am|2 Views
Posted To: Medication Issues
I recently lost my insurance and have been on Keppra and generic Keppra for the last six years.  So far I haven't really had any problems with it but my dosage was recently elevated due to memory loss.  After speaking with my doctor, through his nurse, and...
monkyh...
monkyh...
New - Epilepsy or anxiety - how do I know and what do I do?
Created by monkyh...at11/4/09 - 5:00 am|40 Views|5 Comments
Posted To: New to Epilepsy.com
Hi there. I am new to this forum, and unsure whether I actually have epilepsy or not. I am hoping someone will be able to read my story, and tell me if they experience their attacks in a similar way or not.  
JIMBOMC
JIMBOMC
New - Aneurysm growth
Created by JIMBOMCat11/6/09 - 8:09 am|3 Views
Posted To: Surgery Issues
I have had major surgery 4.5 years ago. Now I have a 4 by 6 plastic on the left side of skull. Recently it has been seen that a aneurysm has grown to a double size since last time it was seen. So I have an appointment in Phila. with a specialist in this...
ETP
ETP
New - Are you an ETP Champion?
Created by ETPat6/8/09 - 3:54 pm|96 Views|12 Comments
Posted To: Fundraising
Epilepsy Therapy Project Champions are people in our epilepsy community who are out fundraising for our organization to support research for new therapies to help people living with epilepsy and to support education through epilepsy.com. The following people...
epi_help
epi_help
New - Welcome to My Epilepsy Diary!
Created by epi_helpat10/31/09 - 4:53 am|27 Views|1 Comment
Posted To: My Epilepsy Diary Help & Feedback
Hi everyone!
missju...
missju...
New - Lamictal and hair loss
Created by missju...at11/2/09 - 8:17 am|31 Views|3 Comments
Posted To: Medication Issues
My neurgologist just switched me from tompiramate to lamictal 200mg and I am very worried about hair loss as a side effect. I lost about 1/4-1/2 of my hair on topiramte and I seem to get every rare side effect there is out there on medications for some reason....
FS
FS
New - New to epilepsy- Anyone wonder if you have non-epileptic seizures?
Created by FSat11/6/09 - 2:47 am|6 Views
Posted To: New to Epilepsy.com
Hi everyone! I was diagnosed with epilepsy about 2 years ago (I'm 31 now). My first few attacks were night seizures, the only indication i had was that i had wet the bed both times. Soon after, i had 4-5 seizures in succession in the span of 1 day and have...
therag...
therag...
New - Problems with male libido
Created by therag...at11/5/09 - 11:50 pm|6 Views
Posted To: Medication Issues
The male libido is something that men consider as the sexual desire that they might have for someone.Many people suffer nowadays from low levels of libido meaning that for different reasons, men might not have a desire to have sex at all.Companies are offering...
Cory7
Cory7
New - I had a seizure and had a brain tumor, but the doctor wont let me...
Created by Cory7at5/1/09 - 10:28 am|46 Views|5 Comments
Posted To: Teen Group
Hello all,
mamato...
mamato...
New - post seizure Vomiting
Created by mamato...at1/1/06 - 1:02 am|2710 Views|16 Comments
Posted To: Parent Group
Hello...I am new to this site...my son may have petite mal seizures....since finding out that this may be true, we have been noticing a few things recently....the one I have that is most standing out is Vomiting....when sleeping he...
rc6002
rc6002
New - Anyone have good results with Lamictal
Created by rc6002at1/24/05 - 8:30 am|5261 Views|105 Comments
Posted To: Medication Issues
Gosh seems like a lot of folks have not had good results with Lamictal.   My son is changing from Tegritol to Lamictal  (a long process).  He is currently at 300 mg a day Lamictal and will have a blood test this...
millac...
millac...
New - Lesions in the brain
Created by millac...at10/5/09 - 6:12 pm|26 Views|3 Comments
Posted To: Diagnostic Dilemmas and Testing
Almost a year ago my boyfriend had several massive seizures in his sleep WHILE taking his depakote. He went into the doctors to be observed, they did a cat scan, and found a lesion in his brain. We've gone through test after test, seen many different doctors,...
mark_88
mark_88
New - Surgery is the way to go! Slowly but surely recovering!
Created by mark_88at11/4/09 - 5:19 pm|22 Views|4 Comments
Posted To: Living With Epilepsy - Adult Issues
sparkbird
sparkbird
New - Gardasil, car accident, stress, PTSD, seizures?
Created by sparkbirdat8/4/09 - 8:16 am|66 Views|6 Comments
Posted To: Living With Epilepsy - Adult Issues
Hi, I finally signed up after browsing the forums here for a while and I had some questions wondering if anyone can relate to what's going on with me. Back in 08 I started reciving the Gardasil shot.  A series of 3 shots to help protect against HPV...
Newyor...
Newyor...
New - A dream or a seizure?
Created by Newyor...at11/5/09 - 5:11 pm|10 Views
Posted To: Living With Epilepsy - Adult Issues
I've had this dream for years and I had it again yesterday. Now I'm starting to think it may be a seizure. Actually, it's not the same dream, it's just that the result is always the same. I'll be out walking somewhere in a crowd or something and then suddenly...
KJL74
KJL74
New - Seizures and hormones
Created by KJL74at11/5/09 - 1:38 pm|17 Views|2 Comments
Posted To: Women With Epilepsy
I am 35 years old and I have petite seizures right before and during my period. This started in high school but recently it seems like it is becoming worse and more often. I've read about people taking birth control pills or taking other meds 14 days out...
nikida...
nikida...
New - Gaining weight since I went off Topamax
Created by nikida...at11/5/09 - 9:48 am|9 Views|1 Comment
Posted To: Medication Issues
I was on both Topamax and Lamictal for a long time. My dr took me off topamax b/c I want to have a baby in the next year. Since then I gained 10-15 pounds. I also quit smoking. I want to know if anyone has gone through this too?
Zoogirl
Zoogirl
New - Is anyone driving with/during partial seizure? I am worried.
Created by Zoogirlat10/3/08 - 5:33 am|95 Views|6 Comments
Posted To: Living With Epilepsy - Adult Issues
Hi
KATHS2
KATHS2
New - Running out of Options
Created by KATHS2at11/5/09 - 12:50 pm|13 Views
Posted To: Medication Issues
First a short history..I'm 54 years old. I was diagnosed with Complex Partial Seizures 2 years ago, though I've probably been having them all my life, especially during my teenage years...My seizures consist of a strange aura, dizziness and fainting....
stephof3
stephof3
New - Hi they want to take my daughter off her meds. not sure what to do
Created by stephof3at11/5/09 - 12:39 pm|11 Views
Posted To: Living With Epilepsy - Youth Issues
Hi I am new to this but my daughter is going to be 18 soon and the doctor wants to take her off of her meds,  She has petit mal seizures so they ask if she has had any and I really don't know.  She also has learning delays so sometimes she may not tell me...
Nicole D
Nicole D
New - Burning sensation in head
Created by Nicole Dat11/5/09 - 12:26 pm|3 Views
Posted To: Medication Issues
Hello, I was diagnosed with Complex Partial Seizures in my left temporal lobe about two months ago by two different neurologists; they both suggested Keppra. I started taking the regular Keppra twice a day and was not doing well on it.
LMAugu...
LMAugu...
New - Our son was diagnosed today with Benign Rolandic Epilepsy (BRE)
Created by LMAugu...at8/18/09 - 12:05 pm|37 Views|4 Comments
Posted To: Parent Group
Our 4 y.o. was diagnosed with BRE. He has had 3 seizures, 2 in June (on the same day) and one in July. Both times he was extremly tired and riding in the car. He was about 30 min. in to his sleep with each seizure. The first two in June were about 30 sec....
myluck...
myluck...
New - keppra and burningand or itching in the head
Created by myluck...at1/22/09 - 9:28 am|8 Views|1 Comment
Posted To: New to Epilepsy.com
has anyone who has ever taken keppra experienced burning or itching in the head?? not the scalp also i can not seem to tolerate the generic very well. are the fillers in the medication different? i take 500 mg 1/2 tablet 2 times a day .  any...
zyn
zyn
New - I have a Question
Created by zynat11/4/09 - 5:56 pm|40 Views|3 Comments
Posted To: Diagnostic Dilemmas and Testing
Hello Everyone,  
Lauren...
Lauren...
New - The Reasons not to consume alcohol or smoke marijuana if you have...
Created by Lauren...at6/6/09 - 10:02 pm|480 Views|48 Comments
Posted To: Living With Epilepsy - Adult Issues
It is a common question on this forum and a frequently asked one in the chat room whether or not it is "ok" to consume alcohol or smoke marijuana when you have been diagnosed with epilepsy or a seizure disorder. I am here to tell you all something...
bleedi...
bleedi...
New - Seizure Alert Dogs
Created by bleedi...at3/26/08 - 10:30 pm|390 Views|33 Comments
Posted To: Living With Epilepsy - Adult Issues
A family member asked me what is the purpose of a seizure alert dog. I don't have one and I don't need one. I basically said the dog is there to protect a person with epilepsy in the case they have a seizure in public and that it is for people who don't...
remedy...
remedy...
New - Myths About Epilepsy
Created by remedy...at11/4/09 - 11:49 pm|26 Views
Posted To: Epilepsy Journal: Insights & Strategies
Many people have written essays about conventions and beliefs in epilepsy that have been passed through generations to generations. These beliefs mostly include superstition and misconceptions that make epilepsy sound worse than it should be.
cjad234
cjad234
New - Epilepsy and marijuana
Created by cjad234at2/5/05 - 9:32 am|15207 Views|188 Comments
Posted To: Complementary Therapies
Hi all, I was wondering whether or not the effects of pot on the brain can intefere with the effects of the epilepsy medicine Tegretol 400mg per day. I know grapefruit and alcohol have adverse effects on the drug's treatments and can...

Anonymous
New - UPDATED: Can they legally fire me???
Created by Anonymousat10/4/08 - 2:33 am|420 Views|30 Comments
Posted To: Living With Epilepsy - Adult Issues
Thank you to everyone who replied to my thread. I am one of the luckier ones, because as I know now, my boss just has "a way with words" and sometimes says things without thinking about how they come across.
Shadrak
Shadrak
New - Is this Aura???
Created by Shadrakat10/28/09 - 11:58 pm|61 Views|3 Comments
Posted To: Living With Epilepsy - Adult Issues
My name is Jordan I'm a 22 year old Male. in may or june of 2006 something happened to me that I've never forgotten. I've also neve known what it was. I'll discribe it and hopefully someone can relate:
CoalMi...
CoalMi...
New - I thought I was doing so well!!
Created by CoalMi...at11/3/09 - 7:07 pm|10 Views|1 Comment
Posted To: Living With Epilepsy - Adult Issues
I was diagnosed with Temporal Lobe Epilepsy in August after suffering a grand mal seizure in late July.  For a year and a half I had been having simple and complex partial seizures each month (right around my period) but never had a clue it was actually...
Maxkat
Maxkat
New - Seizures caused by abdominal pain?
Created by Maxkatat11/4/09 - 5:08 pm|1 View
Posted To: Diagnostic Dilemmas and Testing
Has anybody else every experienced a seizure caused by intense abdominal cramping?
Chalupa
Chalupa
New - Anyone else waiting for their child to 'outgrow' their seizures a...
Created by Chalupaat11/4/09 - 10:08 am|14 Views|2 Comments
Posted To: Medication Issues
My now 5 year old son was diagnosed with partial complex seizures a little over a year ago.  He has experienced about 20 seizures, all of which last 1-2 minutes and happen in clusters of 2-4 over a week long period always precipitated by a cold (ie. fatigue). ...
MichaelK
MichaelK
New - Can exercise induce seizures?
Created by MichaelKat11/16/08 - 4:00 am|214 Views|20 Comments
Posted To: Living With Epilepsy - Adult Issues
All the doctors disagree with me because of the research out there but I gave up running last June because I had a seizure while running. I suddenly collapsed, right before I was going to cross a busy street. The doctors argue that aerobic exercise is especially...
mark_88
mark_88
New - Headed for surgery today!
Created by mark_88at10/8/09 - 10:42 am|62 Views|7 Comments
Posted To: Surgery Issues
anxiously awaiting to get there....im leaving to go to london, ontario for my brain surgery (temporal lobectomy) today and ive been waiting for so many years for this day!!! 21yrs in the suffering of comlex partials and 3 grandmals throughout my life and ...