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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.
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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.
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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.
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Living With Epilepsy - Youth Issues
A place to share questions, concerns and challenges in coping with children's seizures and life issues.
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Diagnostic Dilemmas and Testing
A place to ask questions about EEG's and other tests and to share your experience with the diagnostic process.
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Medication Issues
A place to share concerns, experiences and challenges about medications for seizure management.
| 1939 | 11255 |
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Surgery Issues
A place to share concerns, experiences and challenges about surgical treatment and use of devices for epilepsy.
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Complementary Therapies
A place to share concerns, experiences and challenges about alternative or complementary therapies.
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Parent Group
A place for parents to learn and get support from other parents of children with epilepsy.
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Families & Friends
A place for those who care for and about people with epilepsy - caring for yourselves as well as those around you.
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Women With Epilepsy
A place for women - to share concerns, experiences, and support about issues unique to women with epilepsy.
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Men With Epilepsy
A place for male bonding - to share concerns and experiences of being a man with seizures.
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Veterans with seizures
A place for veterans with seizures or family members to meet and share experiences and concerns.
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Teen Group
A place for teens with seizures to talk with each other, share experiences and support, or just hang out!
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Advocate for Epilepsy
A place to share concerns and strategies for making your voices heard about epilepsy.
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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.
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Creative Corner
Share your creative talents! A place to add your poetry, songs, writings for all to see. (Authors should be attributed properly!)
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Epilepsy.com Help
A place to ask questions about the site or to provide feedback to site administrators.
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mel239 New - TLE or PNES?
Created by mel239at6/14/09 - 11:05 pm|88 Views|6 Comments Posted To: New to Epilepsy.com I am a 45 yr old female with 8 kids and am currently living with my boyfriend.I have the usual stress and have been on disability from work for a year now.I had a mild stroke and my recovery was slow.Four months after I knew something was wrong.
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larryz New - Can taking OTC medications for cold, flu and sinus infections res...
Created by larryzat12/18/09 - 2:46 pm|42 Views|3 Comments Posted To: Living With Epilepsy - Adult Issues
Can taking certain OTC medications for cold, flu and sinus infections result in seizures?
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emzcla... New - twitchy arm
Created by emzcla...at10/2/07 - 8:01 am|236 Views|4 Comments Posted To: New to Epilepsy.com I am 13 and have just started getting twitches in my arm and leg on the right side. these are really small twitches not jerks and almost look like nerve spasms. i have had them on and off one or two a week lasting mainly for a few...
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jasssmit New - How long do your symptoms last (if they ever even go away)
Created by jasssmitat2/4/10 - 3:38 pm|53 Views|8 Comments Posted To: Living With Epilepsy - Adult Issues
During every appointment with my neurologist, I voice my concern regarding my fatigue, irritability, and memory difficulty--symptoms many of us know very well. My last visit, I told her that in regards to the fatigue, I can barely even function outside...
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phylis... New - Who is your personal hero?
Created by phylis...at2/7/10 - 6:07 am|89 Views|12 Comments Posted To: Living With Epilepsy - Adult Issues
For me, it was my Grandfather, who believed in me completely and thought that I could do anything I set out to do. At the age of 14, I said I wanted to be a writer. "Fine, he said. You'll go to the Columbia School of Jounalism." (Unfortunately...
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Matthe... New - Causes of Underemployment.
Created by Matthe...at8/20/08 - 10:38 am|84 Views|9 Comments Posted To: Living With Epilepsy - Adult Issues
For those of you who are able to work, but cannot find employment, I was wondering what you think the cause of this might be. For example, is it lack of transportation, experience, education, etc.? By "employment" I mean something commensurate...
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jonah New - Is there such a thing as PNES
Created by jonahat12/19/09 - 5:52 pm|28 Views|2 Comments Posted To: Living With Epilepsy - Adult Issues |
maja99 New - Just Looking for Some Help...
Created by maja99at2/7/10 - 11:24 am|37 Views|4 Comments Posted To: New to Epilepsy.com Hello everyone..
I am new to my.epilepsy.com
I am a Pharmacy student at McMaster University and I have been selected to do a presentation on epilepsy
I have a questions I am hoping someone would be kind enough to answer for me..
I have done a lot of research...
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Juniper New - Convulsions/Seizures after being tickled
Created by Juniperat2/8/10 - 9:08 pm|5 Views Posted To: Living With Epilepsy - Adult Issues
I'm new to this site/forum and undiagnosed (though, I am able to go through the site and identify with many of the symptoms, etc listed.)
My question may be a bit wierd.
My boyfriend and I recently ended up in a tickle fight. I had gone for his...
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djwray New - New to Epilepsy.com
Created by djwrayat2/8/10 - 5:52 pm|21 Views|1 Comment Posted To: New to Epilepsy.com
Hi,
I have lived with epilepsy since my late teens (youth onset) and thankfully it has been controlled for many years. I was diagnosed with temporal lobe epilepsy and suffered tonic-clonic seizures despite the fact that there was no (detectable)...
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geneva... New - 5 year old son with "episodes" that I believe are status epitlept...
Created by geneva...at2/8/10 - 6:42 pm|10 Views|1 Comment Posted To: Parent Group Just a few days ago my 5 year old son had his 3rd episode in just under
one year of seizure-like activity. He starts off just dizzy, disoriented, and
sick looking. His face becomes flushed and his eyes are deviated to the right.
He is conscious and sometimes...
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geneva... New - HELP! 5 year old Son just had 3rd "episode" believed to be status...
Created by geneva...at2/8/10 - 6:30 pm|6 Views Posted To: Diagnostic Dilemmas and Testing |
adamss... New - Chiropractors?
Created by adamss...at8/1/09 - 11:48 am|67 Views|10 Comments Posted To: Complementary Therapies
Has anyone tried this? How did it go. I've heard that having adjustments has helped some people dramatically. I even read this in an epilepsy textbook online. On another website there was a story about a girl who had multiple grand mals a day and they...
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krowlyk New - deciding whether or not to medicate my 11-month-old daughter
Created by krowlykat11/25/09 - 3:00 pm|39 Views|7 Comments Posted To: Medication Issues
My daughter has had 2 seizures now, about 6 weeks apart. They were 15 and 25 minutes long, partial seizures affecting her whole right side. After reading about the side-effects you all have reported, and since she is too young...
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bleedi... New - Tegretol / Carbamazepine immunity
Created by bleedi...at2/8/10 - 3:44 pm|8 Views|1 Comment Posted To: Medication Issues
Hi
I've been taking Carbamazepine for more than 20 years. I started with 900 mg / day. Now I take 400 mg. / day. A friend of mine who also has epilepsy tells me she became immune to Carbamazepine. I was wondering if anyone has ever developed an immunity...
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sinns New - Son with complex partial seizures - going in tomorrow for 48 hour...
Created by sinnsat1/21/10 - 2:06 pm|37 Views|5 Comments Posted To: Living With Epilepsy - Youth Issues |
Marsha... New - Drop Attacks
Created by Marsha...at12/4/09 - 4:59 pm|60 Views|7 Comments Posted To: Women With Epilepsy |
Mornin... New - Seizures During Sleep
Created by Mornin...at2/11/09 - 7:13 pm|65 Views|5 Comments Posted To: Living With Epilepsy - Adult Issues
Hi, I'm new to this site. I have most of my seizures in my sleep or in the morning after waking up.. my last one being two days ago. It seems that either illicit drugs, alcohol or lack of sleep bring most of my seizures on, and I'm working on...
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tashaj... New - Is sleep deprivation your trigger
Created by tashaj...at1/6/10 - 5:22 am|23 Views|1 Comment Posted To: Women With Epilepsy |
someone New - Should I leave my epileptic wife?
Created by someoneat1/30/10 - 7:04 am|294 Views|28 Comments Posted To: Living With Epilepsy - Adult Issues The subject will take most of you with surprise. But hear me out first..
I got married a year ago. It was a traditional arranged marriage. I wasn't in love with her, but as is customary in our family, our parents tied the knot and we got married. I met...
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pswebster New - 6 years old abnormal EEG, but no seisures. Help me understand!
Created by pswebsterat8/21/06 - 8:29 pm|1799 Views|5 Comments Posted To: New to Epilepsy.com My 6 years old son had abnormal EEG and his neurologist told us that he does not have seisures, he just has tics.
The EEG report says he has very frequent epileptiform discharges during drowsiness and sleep from the centrotemporal...
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rileymom New - special needs bed
Created by rileymomat6/10/07 - 12:18 pm|615 Views|5 Comments Posted To: Living With Epilepsy - Youth Issues My daughter is 5 and 42" tall. Riley is developmentally delayed and has some autistic characteristics. She is outgrowing her crib and crib tent set up. I need another type of bed that will be safe and secure for her to sleep in....
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philgr... New - Keppra generic (Levetiracetam) availability in any Medicare Plan ...
Created by philgr...at12/8/08 - 6:14 am|46 Views|2 Comments Posted To: Medication Issues Does anyone know of a Plan D Medicare RX plan that includes the generic form of Keppra in its formulary? I got some Levetiracetam at my local CVS the other day but can find no formulary that covers it. Keppra is my most expensive med and when I hit the...
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derek3... New - Stress from court deposition
Created by derek3...at2/4/10 - 2:15 pm|16 Views|2 Comments Posted To: Living With Epilepsy - Adult Issues Hi can anybody help me?
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jessekaye New - New to epilepsy forum
Created by jessekayeat2/5/10 - 2:28 pm|20 Views|1 Comment Posted To: New to Epilepsy.com
Hi,
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lisabob45 New - Experience with aura's. Not sure if it's seizures.
Created by lisabob45at2/7/10 - 5:28 am|18 Views|1 Comment Posted To: New to Epilepsy.com |
Campbe... New - Focal seizures
Created by Campbe...at2/5/10 - 11:00 pm|48 Views|5 Comments Posted To: Living With Epilepsy - Adult Issues
Hello,
On 11/2/09, I was diagnosed epileptic. The original EEG showed sharp LEFT sided waves, now they are on the RIGHT.
I am on Lamictal & Keppra. They still are not controlled.
Has anyone else had this happen where it was on one...
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victor... New - Ecstatic Seizures
Created by victor...at8/27/09 - 4:32 am|3471 Views|354 Comments Posted To: Living With Epilepsy - Adult Issues
Hi
Has anyone experienced "ecstatic" seizures? I've had a series of them recently, and they are amazing: totally outside the range of normal experience and by far the best experiences of my life! I'm not religious or "spiritual"...
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rvsoest New - Hippocampal transection of left temporal lobe
Created by rvsoestat2/1/10 - 12:17 pm|13 Views|1 Comment Posted To: Surgery Issues Hi
I'm having epilepsy for 23 yrs. now, and my neurologist wants to try a new kind of operating on me called: Hippocampal transection of the left temporal lobe.
Has anybody heard of this?
What is does is instead removing the left temporal lobe, it is...
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elly New - Myoclonic jerks occuring in the evening?
Created by ellyat11/1/07 - 10:10 am|513 Views|26 Comments Posted To: Diagnostic Dilemmas and Testing Hi, I have never posted on here before but I am a bit freaked out and everyone seems to know so much I was hoping someone could help me!
I was diagnosed with Juvenile myoclonic epilepsy almost 3 years ago (I am 23 now). I had been...
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cdurut New - Christian healing
Created by cdurutat2/7/10 - 9:33 pm|5 Views Posted To: Living With Epilepsy - Adult Issues
I am a Christian but I have also lived with epilepsy for 16 years (half my life)
I have never been quite sure about asking God for healing (although many friends have suggested I should) but today I feel like I've had a bit of a break through...
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joycep... New - Mother of 22 year old needs help
Created by joycep...at9/11/09 - 6:31 pm|54 Views|8 Comments Posted To: Living With Epilepsy - Adult Issues
I'm a mother of a 22 year old son who had his first gran mal in 3rd grade and diagnosed with e when he was 15. Trilepal controlled them until last October. In the last 10 months we have doubled the dose of trilepal and added and doubled topomax and...
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sparkbird New - Gardasil, car accident, stress, PTSD, seizures?
Created by sparkbirdat8/4/09 - 8:16 am|81 Views|8 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...
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SaulGoode New - "Stockholm Syndrome"
Created by SaulGoodeat12/22/09 - 7:04 pm|126 Views|10 Comments Posted To: Living With Epilepsy - Adult Issues Does anyone else worry sometimes that they may NOT be epileptic anymore?
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koalb New - tegretol, low white count
Created by koalbat1/11/10 - 8:46 am|27 Views|3 Comments Posted To: Medication Issues Hi,
I have been on Tegretol for many years. Lately I have not been feeling good at all. My white count is below normal, I'm dizzy, headaches and migraines, body aches and chest pains. I am always so tired. I saw my primary who did some blood work and wondered...
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dfarrell New - Faked seizures
Created by dfarrellat5/17/05 - 10:03 pm|2467 Views|107 Comments Posted To: Corner Booth |
nature... New - Was it a seizure?
Created by nature...at2/7/10 - 5:44 pm|8 Views Posted To: New to Epilepsy.com
Before going into my story and question, I should mention that at this time, I have not yet been diagnosed with epilepsy, nor am I sure whether what I experienced was a seizure. I am undergoing several tests to investigate this further, but wanted to post...
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Spike. New - Just for Laughs
Created by Spike.at2/7/10 - 1:25 pm|6 Views Posted To: Corner Booth
Frostie Dancing To Shake Your Tail Feather!
If you've got speakers on your computer, then turn them on, and watch the video at...
http://www.youtube.com/watch?v=0bt9xBuGWgw
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Jess_sMom New - Newly diagnosed JME
Created by Jess_sMomat3/30/08 - 10:39 am|661 Views|65 Comments Posted To: Parent Group
Hello Everyone.
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argyle... New - Is my drooling because of my BRE?
Created by argyle...at2/7/10 - 11:16 am|8 Views Posted To: Living With Epilepsy - Youth Issues Hi :) last May at the age of 13 i had my first tonic-clonic seizure i went to Cook Children's Hospital and they preformed alot of testing a week later i was told i had Rolandic Epilepsy and that i will most likely grow out of it but that they would like to...
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Clarice25 New - Is anyone taking Keppra XR and Lamictal?
Created by Clarice25at4/16/09 - 12:52 pm|24 Views|4 Comments Posted To: Medication Issues I have been on Keppra XR and Lamictal since October and I have had great results and I have been seizure free. I was just curious to see how this combo is working on anyone else? Thanx ~Danielle
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gregs_... New - Controlling seizures without medication
Created by gregs_...at4/22/09 - 10:27 am|167 Views|18 Comments Posted To: Living With Epilepsy - Adult Issues
I hope that this does not turn out to be a controversial subject.
Let me just start by saying that I don't know what kind of seizure disorder I have. I have had only 3 EEGs between the time I was 19 and now 35.
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LoveKe... New - Generalized ideopathic/tonic clonic seizures..but simple partials too?
Created by LoveKe...at2/7/10 - 8:36 am|8 Views Posted To: Living With Epilepsy - Adult Issues
Hello everyone, I'm new here and it looks a helpful place.
I'm 21, and had my first TC seizure when I was 14. Because it was a one-off, I just went home from the hospital and that was that. However, when I was 18, I had 3 more in the space of a year....
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Newyor... New - Is anyone else like this? help!
Created by Newyor...at9/19/09 - 9:41 pm|144 Views|18 Comments Posted To: Living With Epilepsy - Adult Issues
I feel like I'm drowning in a sea of confusion. I was diagnosed with epilepsy when I was a baby and then at 14 I started to react badly to zerontin. My doctors took me off the meds and said my seizures had stopped. I thought I was cured and seizures were...
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magichild New - Is a Medi-tag a good present for my fiance?
Created by magichildat2/8/09 - 11:18 am|66 Views|9 Comments Posted To: Living With Epilepsy - Adult Issues
My fiance has recently begun having tonic-clonic seizures and since this is new for him, he has no medi-tag or anything like that. He is finding it hard to come to terms with it all, so I want to get him one so that when he looks at it he can associate...
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Anonymous New - UPDATED: Can they legally fire me???
Created by Anonymousat10/4/08 - 2:33 am|439 Views|31 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.
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brittnyh New - Grey Matter Heterotopia
Created by brittnyhat1/30/10 - 4:28 pm|72 Views|10 Comments Posted To: New to Epilepsy.com I am 35 and recently found that I have grey matter heterotopia. I am
currently on seizure meds that have made the seizures less harsh but I
still get them. I have memory loss, confusion, dizzy spells
(head-rushes), body numbness, tingling, vision impairment...
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Maddy New - My body
Created by Maddyat2/2/10 - 2:05 pm|70 Views|8 Comments Posted To: Living With Epilepsy - Adult Issues
i sit here reading people's comment, people young, old. People who have had seizures for
40 years everyday. i get so angry at my body for betraying me. But I see that there are survivers
so there arent reasons for quitting.
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cheryl... New - massage therapy
Created by cheryl...at2/26/07 - 1:13 pm|1252 Views|17 Comments Posted To: Complementary Therapies I'm a massage therapist and just wanted to ask anyone who has epilepsy if they ever receive massage and whether or not they find it beneficial or if it is contraindicated...
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quirky New - Left Parietal Lobe - surgery
Created by quirkyat4/12/08 - 9:22 am|38 Views|4 Comments Posted To: Surgery Issues
Hi,
I have parietal lobe epilepsy and have just found out yesterday that I got the green light for surgery.
I hav yet to meet the neurosurgon and discuss how successful it could be and the risks involvoed if I still want to go through with it.
The...
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