Share questions, concerns about our new Epilepsy Diary here!
|
|
Get started in the Community Forum by browsing through the Forum Topics or Recent Forum Activity, below. If you are logged in, you will see "Reply" links on individual discussions encouraging you to join the conversation! Alternatively, to start your own discussion, simply click the "Start a Discussion" link below. If you are not logged in, register now! Learn more about joining the Community Forum, including starting your own discussions, in our Community Forum Help Section.
| Discussions | Comments | |
|---|---|---|
| 6 | 25 | |
|
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.
| 5 | 46 |
|
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.
| 13 | 36 |
| 2020 | 9128 | |
|
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.
| 2792 | 18602 |
|
Living With Epilepsy - Youth Issues
A place to share questions, concerns and challenges in coping with children's seizures and life issues.
| 486 | 2391 |
|
Diagnostic Dilemmas and Testing
A place to ask questions about EEG's and other tests and to share your experience with the diagnostic process.
| 670 | 2971 |
|
Medication Issues
A place to share concerns, experiences and challenges about medications for seizure management.
| 1868 | 10874 |
|
Surgery Issues
A place to share concerns, experiences and challenges about surgical treatment and use of devices for epilepsy.
| 442 | 2779 |
|
Complementary Therapies
A place to share concerns, experiences and challenges about alternative or complementary therapies.
| 151 | 1138 |
|
Parent Group
A place for parents to learn and get support from other parents of children with epilepsy.
| 1007 | 4924 |
|
Families & Friends
A place for those who care for and about people with epilepsy - caring for yourselves as well as those around you.
| 675 | 4099 |
|
Women With Epilepsy
A place for women - to share concerns, experiences, and support about issues unique to women with epilepsy.
| 652 | 4051 |
|
Men With Epilepsy
A place for male bonding - to share concerns and experiences of being a man with seizures.
| 80 | 591 |
|
Veterans with seizures
A place for veterans with seizures or family members to meet and share experiences and concerns.
| 5 | 32 |
|
Teen Group
A place for teens with seizures to talk with each other, share experiences and support, or just hang out!
| 245 | 1489 |
|
Advocate for Epilepsy
A place to share concerns and strategies for making your voices heard about epilepsy.
| 64 | 323 |
| 56 | 221 | |
|
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.
| 84 | 281 |
| 421 | 3559 | |
|
Creative Corner
Share your creative talents! A place to add your poetry, songs, writings for all to see. (Authors should be attributed properly!)
| 32 | 119 |
|
Epilepsy.com Help
A place to ask questions about the site or to provide feedback to site administrators.
| 259 | 1209 |
Alang New - Controlling Anxiety
Created by Alangat9/22/09 - 8:35 am|61 Views|4 Comments Posted To: Living With Epilepsy - Adult Issues Hello my name is Aaron I'm 19 years old I was born with simple and complex partial seizures. In truth they didn't used to have too much affect on my life, I'd have several a month if I forgot to eat one night or if I was playing sports and got unlucky. But...
|
drowsy... New - Confused about some terminology
Created by drowsy...at11/19/09 - 11:55 am|23 Views|3 Comments Posted To: Living With Epilepsy - Adult Issues
Hello all,
|
bobfra... New - Top Ranked Hospital or Best Neurologist with Epilepsy Specialty i...
Created by bobfra...at11/15/09 - 3:28 pm|35 Views|4 Comments Posted To: Living With Epilepsy - Adult Issues
Hello Everyone,
Looking for:
Top Ranked Hospital - Best Neurologist with Epilepsy Specialty in: Southern California / Los Angeles / Pasadena
I just experienced my 2nd Grand Mal Seizure/Tonic Clonic 2 days ago at age 22 and it sure does hurt.(Body...
|
helenpe1 New - vns therapy side effects
Created by helenpe1at2/15/06 - 7:10 am|4539 Views|70 Comments Posted To: Complementary Therapies I joined this site yesterday and I'm interesting in touching base with anyone who has a vns. In particular I would like to find out if anyone has experienced any unusual side effects not mentioned by Cyberonics. I occasionally experience...
|
tiff_25 New - Anyone experience memory loss?
Created by tiff_25at8/2/09 - 1:17 pm|470 Views|65 Comments Posted To: Living With Epilepsy - Adult Issues
I have read a lot of stories on here, and havent seen anyone mention having memory loss since being diagnosed with epilepsy. I feel as though my memory has become much worse since being diagnosed in Jan 2009. I have been on Lamictal/Lamotigrine since, increased my...
|
sportz... New - How do you cope with memory loss?
Created by sportz...at11/8/09 - 10:59 pm|56 Views|3 Comments Posted To: Living With Epilepsy - Adult Issues How do you fight your memory loss from your medications or seizures?
|
KATHS2 New - Running out of Options
Created by KATHS2at11/5/09 - 12:50 pm|25 Views|1 Comment 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....
|
IRTIM2 New - Holy Cow, am I lost on what to do!!!
Created by IRTIM2at11/20/09 - 8:26 am|4 Views Posted To: Women With Epilepsy
Hello friends my name is Tim, 11/20/2009
My wife(Stephanie) has an epileptic disorder and she takes 1(250mg) tablet of depakote twice a day, as well as 800micos of folic acid.
We were in the process of switching...
|
mjc New - Fire fighter wanting to work with epilepsy
Created by mjcat11/10/09 - 3:22 am|29 Views|5 Comments Posted To: Living With Epilepsy - Adult Issues I am a fire-fighter of 15 years. January 6th 2009 i was diagnosed with a brain tumour. January 26th 09 it was removed. All was going well till 1st November 09 when i had my first seizure. It is looking now like i wont ever return to full operational...
|
Mommam... New - Night Seizures
Created by Mommam...at11/9/09 - 8:09 am|31 Views|3 Comments Posted To: New to Epilepsy.com
Hello all, I hope in the right place. My husband has been having what I will describe as mild seizures for several years now. They almost always happen as he is laying down to go to sleep. At first, they happened 2-3 times a year and lasted maybe 1-2 minutes....
|
trisper New - Seizures after a Left Temporal Lobectomy
Created by trisperat11/10/09 - 11:41 am|29 Views|4 Comments Posted To: Living With Epilepsy - Adult Issues I had a question. I had a left mesial temporal lobectomy dec of 2008. I was fine until may of 2009. I started having these weird feelings that to me was like the warning signs of a seizure. It would be the metallic taste and smell, feelings of impending doom,...
|
happygirl New - Video EEG
Created by happygirlat11/10/09 - 11:19 am|55 Views|5 Comments Posted To: Diagnostic Dilemmas and Testing
Hi,
I am going into hospital for a video telemetry at the end of the month. I have been told that I have to HAVE someone sit with 24/7 to monitor if I have any seizures and thereafter alert staff. I have absense seizures, simply zone out for a...
|
Nancy A.J New - epilepsy and high blood pressure .... its urgent
Created by Nancy A.Jat11/10/09 - 5:39 am|34 Views|7 Comments Posted To: Living With Epilepsy - Youth Issues
hi
i have epilepsy since 5-6 years and i'm on depakine lately i was feeling very tired and i went to doctors they told me that i have to monitor my blood pressure for a while as i might have high blood pressure ... plz help me ... give me any advice...
|
warren248 New - Doctor has prescriber Trileptal for my 2 1/2 year old
Created by warren248at11/9/09 - 7:56 pm|14 Views|4 Comments Posted To: Medication Issues Help! My 2 1/2 year old was recently diagnosed with petit mal seizures. The doctor wants to put him on Trileptal but my husband and I are both skeptical about the medication. I have read through the side effects and I am concerned about the severity...
|
Idontknow New - Don't know what to do first.
Created by Idontknowat11/9/09 - 3:02 am|28 Views|2 Comments Posted To: New to Epilepsy.com hi i'm martin and i'm 26. this morning It was the 10 time in like 30 workingdays that I didn't go to work. It started maybe with 17 that a had very strange feelings almost every morning. I was depressed and couldn't get a positiv thought and I felt like...
|
dadoft... New - Am I just lazy?
Created by dadoft...at11/8/09 - 5:52 pm|73 Views|9 Comments Posted To: Living With Epilepsy - Adult Issues
Hoping someone has an answer to this. I have been dealing with having grand mals since I was 14, first one during school lunch you get well known really fast in school when your carried out on a gurney. In any case, the problem I'm hoping someone can...
|
Nerak95 New - Might Calcium Disorders Cause Seizures?
Created by Nerak95at11/7/09 - 5:53 pm|18 Views|2 Comments Posted To: Living With Epilepsy - Youth Issues
I was looking up some stuff online and inadvertently came across this. I didn't read the article thoroughly but I found my fast skimming interesting.
http://www.healthresearch.com/myoclonic.htm
~Karen
|
jubatum New - seizures when sleeping...
Created by jubatumat11/12/09 - 1:18 pm|22 Views|2 Comments Posted To: Living With Epilepsy - Adult Issues
I had my first grand mal in three years the other night. :(
I went to bed with a KILLER headache in the occipital lobe area. It hurt so bad that i was in bed at 7pm. At 1am i woke up with a bit tongue and what smelled like urine.. good...
|
nuvasoo New - Epilepsy and emotional trauma
Created by nuvasooat11/12/09 - 1:03 pm|21 Views|3 Comments Posted To: Diagnostic Dilemmas and Testing
Hi everyone!
|
epi_help New - Diary reminders
Created by epi_helpat11/13/09 - 5:16 am|42 Views|11 Comments Posted To: My Epilepsy Diary Help & Feedback
Hi everyone,
Anyone having trouble setting up to have reminders from your diary sent to your phone by text message? If your cell phone carrier is not there, let us know and we'll try to get it added. If it's there but not working right, let us know...
|
Hismom New - Where does your young child with nocturnal seizures sleep?
Created by Hismomat11/13/09 - 12:28 pm|8 Views|2 Comments Posted To: Parent Group
I admit, my son sleeps in his toddler bed in our master bedroom. I can't sleep not knowing what he's doing while he's sleeping. His seizures are so subtle I don't pick them up on a baby monitor.
What have other people figured out?
|
vic New - DAILY HEAD PAIN AFTER TEMPORAL LOBECTOMY
Created by vicat11/13/09 - 1:19 pm|25 Views|3 Comments Posted To: Surgery Issues
My daughter had a left temporal lobectomy, following placement and
removal of subdural grids and depth electrodes, January 27th 2009. We
went about 5 months with NO SEIZURES- YAY! Unfortunately, at right
about 6 months, she began having very severe head...
|
mother... New - traped in my own body
Created by mother...at11/13/09 - 3:30 pm|33 Views|3 Comments Posted To: My Epilepsy Diary Help & Feedback My name is crystal I'm 27 now with a 3yr old.I was a healthy 24yr old when 2 months after my darling lil girl I started having seizures. The first was at my mothers house I had drove to her house which was only 15min away. I had my baby who is mind you 2mo...
|
davnic13 New - Being a father with epilepsy
Created by davnic13at11/13/09 - 7:02 pm|25 Views|5 Comments Posted To: Parent Group |
hkhoyt New - Purchasing Medication from Canada
Created by hkhoytat11/13/09 - 9:09 pm|24 Views|4 Comments Posted To: Medication Issues |
sparke... New - New Research Study on Ictal Religious Experiences
Created by sparke...at11/14/09 - 9:53 am|24 Views|3 Comments Posted To: Living With Epilepsy - Adult Issues
I saw this recently - I wonder what sort of study this will be. If they will be entering into this with the mindset "Ictal Religious Experiences=psychosis" or if they are really interested in pursuing this fascinating topic further. Hmmm
--sparker
|
Mosmer36 New - Can somebody relate to me and tell me im not the only person like...
Created by Mosmer36at11/14/09 - 9:31 pm|40 Views|5 Comments Posted To: Women With Epilepsy
Hi my name is Marsha,
|
Rachel... New - Night terrors and epilepsy
Created by Rachel...at11/14/09 - 11:36 pm|35 Views|5 Comments Posted To: Living With Epilepsy - Adult Issues
Does anyone know if having night terrors and epilepsy are linked? I've had a night terror issue for years, far before I started having epileptic seizures. I started having epileptic seizures (at least during the daytime) when I was 18. My night terror...
|
carlyne New - is anybody experiencing the same?
Created by carlyneat11/15/09 - 1:15 am|61 Views|6 Comments Posted To: Living With Epilepsy - Adult Issues
hi
i am having these things i think they are called aura but i was reading about auras and mine are so different then what i have read .i just want to see if anyone is experiencing the same.
my auras are about one second when its like my...
|
272019 New - left temporal lobe seizures
Created by 272019at11/15/09 - 1:08 pm|19 Views|2 Comments Posted To: Women With Epilepsy
Hi!
|
Blaine New - Help! My 2 year old had a 90 min. seizure? She almost died and we...
Created by Blaineat11/15/09 - 9:43 pm|92 Views|13 Comments Posted To: Living With Epilepsy - Youth Issues Hi our daughter is two years old and had a 90 minute seizure. We live in a very rural area and it took that long for an emergency airplane to get to us and stop her seizure. She also aspirated on her vomit, then stopped breathing so they put in a breathing...
|
wyboemail New - Fundraisers
Created by wyboemailat11/17/09 - 12:33 pm|6 Views|2 Comments Posted To: Fundraising |
crystal l New - living with seizures
Created by crystal lat11/17/09 - 8:57 am|16 Views|3 Comments Posted To: Medication Issues i am new on here but my 8 year old daughter has complex partial epilepsy since 3 months of age and i have not been able to get much of my questions answered can some one help
|
CecilyG New - I just need to know i'm not the only one...please help!
Created by CecilyGat11/16/09 - 7:26 pm|13 Views|2 Comments Posted To: Diagnostic Dilemmas and Testing
Hi, I just joined this thing, so i'm not sure how this all works, but here goes...
|
robin4902 New - Right Temporal Lobectomy
Created by robin4902at11/19/09 - 5:02 pm|9 Views|2 Comments Posted To: Surgery Issues Hi all-For anybody that might be interesting in pursuing brain surgery, I'd be happy to discuss my situation. I had a right temporal lobectomy in December, 2008 at Tampa General Hospital (GREAT staff) and have been seizure free ever since. Surgery was...
|
Riahs Mom New - VNS Related Deaths
Created by Riahs Momat11/19/09 - 3:11 pm|10 Views|2 Comments Posted To: Parent Group |
cam an... New - Behavior issues and epilepsy
Created by cam an...at11/18/09 - 6:17 pm|20 Views|2 Comments Posted To: Living With Epilepsy - Youth Issues Hi
|
mark_88 New - Surgery is a great life change!
Created by mark_88at11/18/09 - 4:03 pm|42 Views|9 Comments Posted To: Living With Epilepsy - Adult Issues so I've been seizure free since day one of my temporal lobectomy. nothing else to worry about. it was allll worth it. now for those who are worried about surgery DONT BE its great! Nothing esle to say.
|
silver... New - John Hopkins?
Created by silver...at11/18/09 - 12:44 pm|13 Views|2 Comments Posted To: Diagnostic Dilemmas and Testing
I'm originally from Maryland and I was diagnoised with a brain tumor a year ago. At that time I was living with my dad while I was attending a trade school. After this happened I went down to live with the rest of my family, my sister and my mother, but...
|
pritam... New - Epilepsy.com Estimated Worth $16 Thousand USD
Created by pritam...at11/18/09 - 9:23 am|22 Views|3 Comments Posted To: My Epilepsy Diary Help & Feedback Epilepsy.com Estimated Worth $16 Thousand USD
Title
Epilepsy.com
Description
Information for those recently diagnosed with epilepsy and for those with intractable epilepsy.
Daily Pageview
14,859
|
fastjim New - autism and now siezures?
Created by fastjimat11/17/09 - 11:34 pm|30 Views|6 Comments Posted To: Epilepsy.com Help |
willow... New - Dealing with doctors
Created by willow...at11/17/09 - 1:58 pm|53 Views|10 Comments Posted To: New to Epilepsy.com
I had a series of seizures several weeks ago, and I've had dizzy spells and migranes almost my entire life, after my seizures, I went into my doctors to get a referal to a neurologist, and my doctor told me that what I experienced wasn't as seizure....
|
skyesmom New - Keppra Questions for Pregnant Folks...
Created by skyesmomat5/1/09 - 3:20 pm|100 Views|21 Comments Posted To: Women With Epilepsy Hey everyone! I'm a first timer to this site and this experience. I am 31 and 14 weeks pregnant with my second child. Ten years ago, when I had my first child, I had never had a seizure a day in my life. All the sudden on a hot summer day almost 4...
|
Gina M... New - Lamictal and tremors
Created by Gina M...at12/21/08 - 9:13 am|130 Views|17 Comments Posted To: Medication Issues Anyone have any problems with tremors and shaking from lamictal?
|
wdm1967 New - Switching from Dilantin to Lamictal
Created by wdm1967at4/12/08 - 10:27 am|140 Views|19 Comments Posted To: Medication Issues
I am 40, have been living with epilepsy for 33 years. After an initial few tries on a few different meds, found that dilantin completely controlled my seizures. Outside of 1 when i went through a growth spurt (med levels too low for weight gain), 1 when...
|
Lauren... New - The Reasons not to consume alcohol or smoke marijuana if you have...
Created by Lauren...at6/6/09 - 10:02 pm|513 Views|51 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...
|
chubbers New - Is Anyone Taking Topamax
Created by chubbersat2/9/05 - 2:40 pm|2897 Views|61 Comments Posted To: Medication Issues I'm 27 & I have been on on epival for 11 years. Just as I was getting comfortable with my life & getting used to epival my doctor recently made me change my medication due to my migraines. My doctor didnt want to increase my intake...
|
jonah New - does this sound like an aura?
Created by jonahat11/19/09 - 7:22 pm|7 Views Posted To: Living With Epilepsy - Adult Issues Several times now I will be in different places and swear I smell something like a dead animal. I know this sounds awful and it smells awful. I am wondering now if this could be an aura from a simple partial seizure. I have never had this type before. ...
|
Awtum New - Does anyone have JME? I have a question.
Created by Awtumat7/20/08 - 12:38 pm|62 Views|4 Comments Posted To: Living With Epilepsy - Youth Issues
I've had Epilepsy for pretty much five years now and I've grown more photosensitive and have recently been diagnosed with JME (Juvenile Myoclonic Epliepsy) but I don't have the jerks. I have everything else on the symptoms list but the jerks.
Does anyone...
|
Fawn1981 New - Contemplating Surgery
Created by Fawn1981at9/23/09 - 12:50 pm|76 Views|7 Comments Posted To: Surgery Issues |
