Temporal Lobe Epilepsy

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Comment by debbie john on May 3, 2013 at 7:48pm

well Athena, all I can say is I've tried about all of them but have been lucky with really no side effects. I am on keppra, vimpat, and had just gotten off trileptal. I didn't see that on your list. i'm sorry though you are having these problems but please keep in touch with us.

Comment by debbie john on May 1, 2013 at 12:25pm

I guess I've never seen this site so i'm a newcomer too. well to tell my story I had gotten ill at age of 38 and had brain damage and after just a few years my seizures began. I had the same kind of seizures in my left temporal region. finally in 2012 I had my brain surgery in feb. and have been seizure free. I also wear cochlear implants so with them I am unable to have mri's so the dr was doing other tests on me because of that. so am very lucky.

Comment by Shareeza on April 30, 2013 at 10:53pm

http://kwiksurveys.com/s.asp?sid=8tfe8yt07vxgu7d145280

Please full up this questionnaire! Its about a project i am doing to help epileptic students! Please

Comment by Mark Nordyke Jr on April 22, 2013 at 5:18pm

Hello to everyone! I too am new here like some others. I am one who had temporal lobe seizures from at least the age of 7yrs and lasted until 2007 until I underwent surgery (lobectomy). Thank God I have been seizure free since then. I come here to be as supportive to others as I can possibly be, and to share as much info/advice as I possibly can (inc discussions related to work, interviews, etc)!

Regardless as to where you stand in life, just keep looking forward and don't give up!!! I look forward to speaking with many of you out there!

Comment by Nancy Young on April 15, 2013 at 10:09pm

I have made comments on this group before but even though I am going to be 40 on july 12th my mentality is that of a 19 or a 20 yr old.  I hold down a family, an 18 year marriage, had one child die at age 13 from a rare from of JME and  have a 17 year old at home who is a junior in HS, abd handled a move to Hi almost 4 years ago.  I have been here for only 3.5 years now.

I am taking classes in the RN program at UH that runs parrells to teh neuro science progrem so I can  work in an EMU someday. 

I was an EMT-basic, and EMT-intermedic, and a paramedic in the ER, but lost my liscence and ceritfication after I started having szs.  Too much of a risk.  I have Discalui probably spelled wrong which is the equivalent to dyslexia in reading so I do not do well with #s.  I did not want to give a person tehw rong amount of meds on the truck, so I did the ER instead where it was a much more controled envioronment. 

I wrote the boards and passed but still had to surrender my liscence and certification for teh restof my life.

Hi, does not reciprocate like La and AZ did.  IT has its own things.

better get going for now talk to you all later,

Mahola,

Nancy 

Comment by Pilar Cooke on April 1, 2013 at 7:32pm

Im currently in the process of getting a neurologist after 5 years of no insurance. So this is good! When I was a child I was diagnosed with generalized t-c seizures - as recent as the beginning of lest year my triggers started changing. One t-c seizure at the start of my cycle, then throughout. Then pain, activity, heat, cold, stress, excitement, sneezing and my asthma would trigger something. the weird thing is my seizures changed... My boyfriend would describe it as: sometimes I would be walking on the sidewalk, have a seizure and keep on walking into the cross walk "like a toy soldier" without warning kind of like a blackout drunk - talk gibberish - make unnecessary hand movements...I have been though a lot. Homeless, getting told by nurses and doctors at the county hospital I have to go to that Im faking or mental (Im starting to believe them), and Im fighting with the insurance for many reasons. I never used to be this way. Like this morning I woke up with my tongue chewed on - that's my normal. That is what Im used to. Is it possible for someone to be diagnosed with generalized TC and have it switch later in life?

Comment by Nancy Young on March 26, 2013 at 10:41pm

I want to say sorry to you all becuasie I do not knwo how to start a dicussion so I am posting on the wall instead adn have never heard from any of you.

Nancy

Comment by Nancy Young on March 21, 2013 at 10:25am

I had a car accident dec 3 of 02 by loosing control of my car crossing on coming traffic lane (no one was coming) jumping a curb and hitting a tree head-on.  No one knows if I blacked-out or slid on black-ice and then that happened.  I only remember coming to at the tree.  Some guy was in his front yard as this occurred as I was told and he called 911.  I was helped both by the police and medics one of which was a class mate.  In April pf 03 I had 2 EEGs 2 weeks apart that were sleep-deprived the first one had activity coming from my left temporal lobe in 3 places and the second one was even worse than the first one in terms of activity.  I was then sent to an EMU which treated me horribly and said that the 9 day stay was inconclusive when in fact I did have 2 szs that they put were questionable.  I got a different doctor and have had him for 6 years now.  He got the reports and was livid so he put me back in the EMU where he was located and re-did the whole thing and got what he needed.  The first night there I had 2 staring szs and spread out over the next 4 days I had 3 massive Complex Partial szs, all of which had to be stopped with IV Ativan.  DX-Left Temporal Lobe Epilepsy.  They figured that the lesions were too close to serious functions that they could not do surgery so I was implanted with the VNS.  That has worked GREAT!  It brought down my szs from 10-12 a day to 3-4 a month.  Can not work or drive.  I am away from GLendale, AZ and am in HI at UH taking classes to deal with neuro science and Nursing.  I will be here at least then hope to stay for good. So I shall see what it brings.  I take 3 mgs of Klonopin, 600 mgs of Lamictal, 200 mgs of Vimpat (that used to be 600) but will be going for good when I see him next time I fly back in, and 200 mgs of Topamax which just got added 1.5 months ago.

Comment by Dianne on February 18, 2013 at 7:20pm

Jennifer.....The vns implant is a small device that put under your skin it is in the upper left chest area.  There are wires/leads that go from it to your neck and is attached to your vagal nerve.  My surgery I just had was a MRI laser surgery.  The surgeon makes a whole the size of a pencil incerts a rod through the skull.  They take you to the MRI unit and a laser is inserted in the rod and they can see as they watch the MRI pictures exactly where they want to go to get the part of the brain they want to get to.  This surgery is less invasive and recovery time is quicker.  Before my surgery they turned my vns off and it will not be turned back on.  Do you have a vns? 

Comment by Jennifer Jacobs on February 18, 2013 at 4:51pm

Hello Dianne.  They probably meant that I have them on both sides, but I was always told I just had them on the left side.  After having them for 38 years maybe it spread.  I can't quite remember exactally all about it.  But they had to have done something because I have 4 pieces of my skull missing, but it has been 8 years since it was done so I do believe some of the bone has grown back.  Did they remove some of your skull and get to your brain to implant the vns?  It must have been done threw an MRI that they found I was having them on both sides.  But, even if I did have them on both sides they could have probably done something.  They did say they couldn't control when they happened and they happened so fast.  That was when I was in the hospital for around 2 weeks.   

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