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DiscussionsComments
My Epilepsy Diary Help & Feedback
Share questions, concerns about our new Epilepsy Diary here!
332
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.
547
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.
1542
New to Epilepsy.com
A place for newcomers to the site. Stop by and introduce yourself.
21729694
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.
303120148
Living With Epilepsy - Youth Issues
A place to share questions, concerns and challenges in coping with children's seizures and life issues.
5262534
Diagnostic Dilemmas and Testing
A place to ask questions about EEG's and other tests and to share your experience with the diagnostic process.
7203179
Medication Issues
A place to share concerns, experiences and challenges about medications for seizure management.
199711507
Surgery Issues
A place to share concerns, experiences and challenges about surgical treatment and use of devices for epilepsy.
4642881
Complementary Therapies
A place to share concerns, experiences and challenges about alternative or complementary therapies.
1561213
Parent Group
A place for parents to learn and get support from other parents of children with epilepsy.
10585160
Families & Friends
A place for those who care for and about people with epilepsy - caring for yourselves as well as those around you.
6824134
Women With Epilepsy
A place for women - to share concerns, experiences, and support about issues unique to women with epilepsy.
6944264
Men With Epilepsy
A place for male bonding - to share concerns and experiences of being a man with seizures.
87614
Veterans with seizures
A place for veterans with seizures or family members to meet and share experiences and concerns.
743
Teen Group
A place for teens with seizures to talk with each other, share experiences and support, or just hang out!
2541537
Advocate for Epilepsy
A place to share concerns and strategies for making your voices heard about epilepsy.
69313
Insurance Issues
Concerns and strategies for accessing insurance and Medicare Part D
61243
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.
93303
Corner Booth
A place to stop by, socialize and check in with each other. Kick back!
4213582
Creative Corner
Share your creative talents! A place to add your poetry, songs, writings for all to see. (Authors should be attributed properly!)
33127
Epilepsy.com Help
A place to ask questions about the site or to provide feedback to site administrators.
2721221

Forum Activity

 
brittnyh
brittnyh
New - Grey Matter Heterotopia
Created by brittnyhat1/30/10 - 4:28 pm|88 Views|13 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...
prayin...
prayin...
New - My boyfriend has epilepsy...OUR STORY
Created by prayin...at3/19/10 - 12:01 pm|17 Views|2 Comments
Posted To: Families & Friends
The Story of Angelina & James....and epilepsy  
bridgey95
bridgey95
New - Very depressed, unstable and angry
Created by bridgey95at3/19/10 - 7:26 pm|12 Views|2 Comments
Posted To: Living With Epilepsy - Adult Issues
Hi,   I have had epilepsy 15 years. Uncontrolled the whole time. I am on a new medication Vimpat and a birthcontrol (Ortho Micronor since I have catamenial epilepsy) I am to the point right now where I am 28 years old, totally dependent on...
tara m...
tara m...
New - Does Epilepsy Get Worse With Aging?
Created by tara m...at3/18/10 - 10:29 pm|24 Views|3 Comments
Posted To: Living With Epilepsy - Adult Issues
Hi All, First, I should explain that I have been diagnosed nearly twenty years ago with JME, and that it originates in my Occipital Lobe. I experience tonic-clonic, myoclonic jerks, as well as absence seizures. I stopped taking my medications regularly...
kristikay
kristikay
New - IPhone App
Created by kristikayat3/13/10 - 6:03 pm|42 Views|5 Comments
Posted To: My Epilepsy Diary Help & Feedback
I read in a Neurology Now Journal about a seizuretracker app for IPhone. I was pretty excited. However, I searched the app store under every possible name and there is no app. Then when I was setting up my Diary on here I saw that you can also transfer it...
amysus
amysus
New - Considering surgery for temporal lobe epilepsy-help!
Created by amysusat3/18/10 - 3:38 pm|31 Views|6 Comments
Posted To: Surgery Issues
jbmom
jbmom
New - Does anyone really know what the unerlying problem is causing yo...
Created by jbmomat3/19/10 - 7:30 pm|5 Views
Posted To: Living With Epilepsy - Youth Issues
My 6 yr old son who started having seizures at 22 months old, was fairly stable until 12/ 18/09 and since then has had 12 seizures and no one can identify the underlying cause. We are tired of treating the symptom and want to treat the problem. Anyone w/ similar...
blueba...
blueba...
New - Military and Epilepsy, my rights
Created by blueba...at3/18/10 - 11:06 am|14 Views|2 Comments
Posted To: Veterans with seizures
Hello, I am active duty Navy currently and experienced my first grand mal seizure in Sept. 2009. I am been on Limited Duty since then, and will be getting Med Boarded as soon as the results of my 48 hr EEG are analyzed. I am currently at home doing the 48 hour EEG.
Mikey4
Mikey4
New - Deja vu and Epilepsy
Created by Mikey4at9/6/08 - 4:09 pm|309 Views|21 Comments
Posted To: Diagnostic Dilemmas and Testing
Ok I'm going to give a short version and a long version, as the long one might be too long for many... SHORT: -I'm 23, have had 5-6 deja vu episodes in 3-4 weeks. Daydream alot and have fleeting thoughts of normal things seeming weird or funny...
Laura B
Laura B
New - Lamotrigine/ lamictal and contraception
Created by Laura Bat3/5/10 - 2:59 am|32 Views|4 Comments
Posted To: Women With Epilepsy
Hi  I am trying to find a suitable method of contraception, i am particularly interested in the implant/ implanon. There is some confusion as to whether it will work effectively whilst i am using lamotrigine as it may stop the hormone from working...
remedy...
remedy...
New - Myths About Epilepsy
Created by remedy...at11/4/09 - 11:49 pm|79 Views|5 Comments
Posted To: Advocate for Epilepsy
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.
epi_help
epi_help
New - Welcome to My Epilepsy Diary!
Created by epi_helpat10/31/09 - 4:53 am|108 Views|10 Comments
Posted To: My Epilepsy Diary Help & Feedback
Hi everyone!
kjcana...
kjcana...
New - Aura, or something unexplainable!
Created by kjcana...at3/14/10 - 10:40 pm|65 Views|10 Comments
Posted To: Living With Epilepsy - Adult Issues
Hi, Ive had epilepsy for the past 18 years now.  Most of the time well controlled. About 4 years ago I became immune to Tegretol so I was switched to keppra and lamictal. I had been seizure free for over a year until a little over a month ago. I had a seizure...
rootbe...
rootbe...
New - how to get the glue out of your hair
Created by rootbe...at12/12/05 - 7:30 pm|6308 Views|24 Comments
Posted To: Corner Booth
As a hairdresser for 20 something years i learned a trick or to. To help you remove the glue from your hair after an E.E.G try this 5 to 7 asprin crushed Half a cup hot water dissolve asprin in water, 2 good size squirts of shampoo,...
aly_m
aly_m
New - lamictal causing headaches?
Created by aly_mat6/5/05 - 4:15 pm|1882 Views|14 Comments
Posted To: Medication Issues
For some reason I have been getting really bad head aches just out of the blue. do you think it could have anything to due with me taking lamictal, or maybe related to have epilepsy? I would really appriciate any responses!! thanks!-Aly...
knickn...
knickn...
New - help ive got pseudoseizures
Created by knickn...at11/5/08 - 2:34 pm|61 Views|5 Comments
Posted To: Living With Epilepsy - Adult Issues
hi my name is danielle and im 23 years old. ive been having seizures and blackouts for just over 10 years and i have been to c every doctor and have had every test possible but only recently just been diagnoised with having pseudoseizures. i am having trouble...
Lexx
Lexx
New - Disability...
Created by Lexxat3/13/10 - 3:55 pm|101 Views|12 Comments
Posted To: Diagnostic Dilemmas and Testing
Hi. I'm fairly new to the site but have had complex partial seizure disorder for at least 25 years now. I'm 38 years old and I take the generic version of tegretol at 800mg/day but usually end up taking up to 1200mg/day. I was originally on the name brand...
tiff_25
tiff_25
New - Anyone experience memory loss?
Created by tiff_25at8/2/09 - 1:17 pm|1189 Views|158 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...
garye
garye
New - Probable (75%) partial onset (possibly temporal lobe) with second...
Created by garyeat3/18/10 - 11:32 am|23 Views|2 Comments
Posted To: Living With Epilepsy - Adult Issues
Background Male, 42, very active, very healthy. Drink lots of water. Non smoker, social drinker, non drug user. No head injuries in the past. No birth problems. No family history of epilepsy. Fairly stressful period the last 2 years,...
elly
elly
New - Myoclonic jerks occuring in the evening?
Created by ellyat11/1/07 - 10:10 am|526 Views|27 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...
Its Me
Its Me
New - Still Alone
Created by Its Meat3/16/10 - 12:44 pm|31 Views|2 Comments
Posted To: Living With Epilepsy - Adult Issues
I have been looking for someone to date and one day get married.  My epilepsy had gotten in the way. One of the first things I let a guy know is of my condition, just in case a seizure comes up in the mist of a date.  I will not say it right away,...
Lauren...
Lauren...
New - The Reasons not to consume alcohol or smoke marijuana if you have...
Created by Lauren...at6/6/09 - 10:02 pm|623 Views|56 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...
kelvin
kelvin
New - AM FREE FROM EPILEPSY...TRY IT TOO
Created by kelvinat3/17/10 - 5:10 am|32 Views|4 Comments
Posted To: Living With Epilepsy - Adult Issues
I cant beleive this will ever happen to me...i met a man when i travel to africa for business purpose last year and i told him that am suffering from epilepsy and he helped me to cast a spell,,i dont really beleive that the spell will work in the first place...
yvonnel
yvonnel
New - What happens postictally?
Created by yvonnelat12/28/08 - 12:29 am|36 Views|2 Comments
Posted To: Living With Epilepsy - Adult Issues
I have JME, so my seizures are infrequent and happen shortly after waking.  My last seizure, I remember looking at the clock and seeing that I should have been at work a half hour earlier.  At first, I thought I had simply overslept, but the soreness throughout...
beccalf75
beccalf75
New - SPS Symptom Question
Created by beccalf75at3/18/10 - 8:55 pm|5 Views
Posted To: New to Epilepsy.com
randij...
randij...
New - Can you get supplemental insurance with Epilepsy?
Created by randij...at3/18/10 - 8:18 pm|2 Views
Posted To: Insurance Issues
Hello! I am just out of University, off of my parents health care, and going on to new health care at my future employers. While on my current healthcare, I just pay a standard copay, United (my future insurance company) is saying that I'm going to have...
phylis...
phylis...
New - New Brain Wave Therapy for Epilepsy, Pain, Parkinson's and More
Created by phylis...at3/18/10 - 3:25 pm|3 Views
Posted To: Living With Epilepsy - Adult Issues
This breakthrough news comes from Bottom Line Health:  http://view.ed4.net/v/7M9FCP/AMBZC/NJFCYV3/PX9WX/MAILACTION=1&FORMAT=T 
phylis...
phylis...
New - New Brain Wave Therapy for Epilepsy, Pain, Parkinson's and More
Created by phylis...at3/18/10 - 3:24 pm|2 Views
Posted To: Living With Epilepsy - Adult Issues
This breakthrough news comes from Bottom Line Health:  http://view.ed4.net/v/7M9FCP/AMBZC/NJFCYV3/PX9WX/MAILACTION=1&FORMAT=T 
evans_...
evans_...
New - Can't find the source
Created by evans_...at3/18/10 - 10:59 am|8 Views
Posted To: New to Epilepsy.com
jenbren9
jenbren9
New - Epilepsy and Pregnancy
Created by jenbren9at1/4/10 - 6:16 pm|66 Views|9 Comments
Posted To: Living With Epilepsy - Adult Issues
kattat...
kattat...
New - Lamictal Side Affects and TTC
Created by kattat...at3/9/10 - 6:29 pm|26 Views|2 Comments
Posted To: Women With Epilepsy
Hello everyone :)
sonjad...
sonjad...
New - Topamax Dizziness Lasts All Day
Created by sonjad...at3/17/10 - 10:02 pm|16 Views|3 Comments
Posted To: Medication Issues
My doctor put me on Topamax recently. I started taking it about 2 weeks ago. I was taking 25mg the first week, then 50mg the second week and this Friday I am supposed to go up to 75mg and then to a max of 100mg the week after where I am supposed to stay for...
Online...
Online...
New - TOPAMAX - Side Effects - Taste Perversion (Soda/Soft Drinks) TRY ...
Created by Online...at12/20/09 - 7:02 pm|39 Views|3 Comments
Posted To: Living With Epilepsy - Adult Issues
Having just turned 40 and recently been diagnosed with TLE seizures both Simple and Complex Partial.  I was started on Topamax which seemed like a good choice since I have also suffered with migraines for many years.  It has only been 6 weeks since I started...
sparkbird
sparkbird
New - Gardasil, car accident, stress, PTSD, seizures?
Created by sparkbirdat8/4/09 - 8:16 am|103 Views|13 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...
Shakey...
Shakey...
New - Hysterectomy reduce seizures??
Created by Shakey...at3/18/10 - 9:36 am|7 Views
Posted To: Women With Epilepsy
Good morning ladies... I like, many of you, have catamenial epilepsy.  My seizures are completely controlled except for 1-7 days before I start my period.  I have been on several different meds and several different combonations of meds for several...
katesisco
katesisco
New - Epilepsy at 60?
Created by katesiscoat12/12/09 - 11:37 am|11 Views|1 Comment
Posted To: Living With Epilepsy - Adult Issues
Have done the eeg and now wait; first for the emergency room dr to review his tests, then forward to my internist. Took 60 years for what must be simple partial to morph into complex partial.  Fell out of a moving car when I was 3, just kept in family,...
rokchik1
rokchik1
New - Temporal Lobe Epilepsy: what does it feel like?
Created by rokchik1at6/6/09 - 10:00 am|256 Views|18 Comments
Posted To: Diagnostic Dilemmas and Testing
Hi Everyone! This is my first time on this site and I am glad to have found you all!  I was "diagnosed" with Temporal Lobe Epilepsy 18mths ago following years of strange symptoms, 3 abnormal EEG's and an MRI which showed a leision in the...
HERMESIEL
HERMESIEL
New - Having a HUGE INSURANCE ISSUE!!! I need suggestions... PLEASE
Created by HERMESIELat3/16/10 - 6:58 pm|61 Views|14 Comments
Posted To: Insurance Issues
Hi folks, I will be losing my insurance in May, and I am taking Lamictal XR ( 800 mil per day) and I am having a HARD TIME trying to find a Health insurance provider that will cover me as soon as I enroll for it. Mostly everyone wants me to wait 12 months...
barn619
barn619
New - Not a candidate for brain surgery - now what?
Created by barn619at2/14/09 - 10:02 pm|100 Views|8 Comments
Posted To: Complementary Therapies
Hi,
Silver5
Silver5
New - heart pacemaker and VNS??
Created by Silver5at3/18/10 - 6:22 am|2 Views
Posted To: Surgery Issues
Hi everyone,
victor...
victor...
New - Ecstatic Seizures
Created by victor...at8/27/09 - 4:32 am|3953 Views|394 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"...
callpaul
callpaul
New - ALTERNATIVE CURE FOR EPILEPSY.
Created by callpaulat3/17/10 - 1:47 am|34 Views|6 Comments
Posted To: Epilepsy.com Help
 my name is paul frombaltimore ...Ive been epileptic since my childhood and it had caused me so much embarassment, so much pain, it even happened a few times when driving.. i tried all solutions ...spent thousands of dollars with no visible result , and my...
Anie
Anie
New - Low sperm count...anybody?
Created by Anieat3/20/07 - 11:17 am|934 Views|20 Comments
Posted To: Men With Epilepsy
Hi. I read on this website that AED,specially carbamazepine and phenytoin, affects sperm count,sperm mobility,fertility etc. Has this affected any of you or anybody you know? What did you do about it? I need advice. Thank...
sophie...
sophie...
New - Infantile Spasms- ACTH
Created by sophie...at3/17/10 - 3:08 pm|8 Views|1 Comment
Posted To: Medication Issues
hiya everyone, my names mairi and my daughter sophie started taking seizures at 6weeks, we are not about 10weeks down the line and the seizures are still not under control. she was diagnosed wrongly to start with myoclonic epilepsy and put...
dav1dh
dav1dh
New - Left Temporal Lobe surgery
Created by dav1dhat3/10/10 - 10:02 pm|32 Views|3 Comments
Posted To: Surgery Issues
Hello, First off, I have Complex Partial seizures. I have had eplipsy for 10 years.
Ephraimh
Ephraimh
New - Keppra, Lamictal, and Mood
Created by Ephraimhat3/17/10 - 8:14 pm|3 Views
Posted To: Medication Issues
A neurologist told me that a longer-acting or lasting version of Keppra and Lamictal might cut down on the enormous fatigue that takes a hold of me about two hours after I take my drugs.  I take 1250 mg Keppra & 600 mg Lamictal, twice daily, once...
bempey
bempey
New - vns surgery
Created by bempeyat3/9/10 - 3:58 pm|10 Views|2 Comments
Posted To: Living With Epilepsy - Adult Issues
We are considering the vns for my daughter who is 36.  She has had seizures since she was 1.  Any ideas on ways to pay for the vns surgery if medicaid denies it.  This is our last hope.  Side effects of meds are almost unbearable.  Thanks,   Brenda
jopeart
jopeart
New - Sleep Deprivation Grand Mal Seizures?
Created by jopeartat12/13/04 - 2:56 am|4927 Views|38 Comments
Posted To: Living With Epilepsy - Adult Issues
I suffered a grand mal seizure a year ago, and following all the tests over the next six months, was diagnosed not...
phylis...
phylis...
New - Deeply Discounted Drugs Without Insurance
Created by phylis...at3/17/10 - 3:54 pm|8 Views
Posted To: Medication Issues
Believe it or not, you can save BIG bucks at the drugstore around the corner (some prescription, some generic and some of both, depending upon the pharmacy) if you just do a little homework... Costco Member Prescription Program -- offers a discount...
shelti...
shelti...
New - Ketogenic diet and epilepsy cure
Created by shelti...at3/16/10 - 11:16 am|14 Views|3 Comments
Posted To: Living With Epilepsy - Adult Issues
I'm wondering if anyone has tried the ketogenic diet with good success?  I think this research is really exciting and thinking I will definitely try it.  Wowza -- 3 months on this diet, and 33 to 50% chance I could go off meds?!  Why aren't more people...