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Any Temporal Lobe Eplieptics Out There?

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bumble

New User, Becoming EHEALTHy
Joined: 19 Apr 2004
Posts: 3
Location: NW England - rainy Manchester
Any Temporal Lobe Eplieptics Out There?
Posted: 04-19-04 09:07am

Hi there Mr.
Green

i have just found this site, and I am hopeful that I might find others with tle. I have had a great deal of problems getting a diagnonis - seven years of it. But for 14 months I have been officialy a temporal lobe epileptic.I have nocturnal grand-mal seizures, and during the daytime I may hallucinate (in just about every which way you can), suffer fits of confusion and memory loss, I have absences, cognitive behavioural disfunctions, and those evil Evil or
Very Mad migraines. I had to give up work due to my epilepsy, and I have found it very difficult to get out of the crap, with little understanding from authorities and benefits-agencies as to how tle effects a person (psychologically and physically).

What are other peoples experiences with tle?
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sami_1982

Experienced User , Rather EHEALTHy
Joined: 13 Dec 2003
Posts: 200
Location: Australia
Hello
Posted: 04-22-04 00:47am

I see weird shapes
i see stars, dancing stars and singin. The further away the hilucination the huger and the closer the smaller. I always hear a tune,, some where over the rainbow being sung also when this is happening.
I get different feelings from different medications I think/
email me. Mckay_2 1@hotmail.Com
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BillM

New User, Becoming EHEALTHy
Joined: 07 Apr 2004
Posts: 6
Location: texas
Your Brain
Posted: 04-25-04 12:49pm

Hey bumble, read your note I went to have some tests done mri, eeg, ct scan etc. They found a small mass in my right temporal lobe , about 2 centimeters. Doctor said it si what has been giving me problems just like you . Ive had this since early 80,s . Going to have it removed soon. Said I will be back to normal but I still will have to take the meds. For awhile. Go see your doctor and get some tests done and have yourself checked out, its worth it. Bill
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sami_1982

Experienced User , Rather EHEALTHy
Joined: 13 Dec 2003
Posts: 200
Location: Australia
Bumble
Posted: 04-25-04 15:44pm

Dear bumble.
What things do you experiance?
What happens to you, when you are having a seizure, how do you feel, I would like to know if you can help me out because I have been freaking out latley. At night when I lay in my bed I see a square right in the middle of my mind and it is bright, then stars and clouds and bells start to ring then music starts playing. I constantly ask anyone around me if they have asked me something. I am taking epilim ec 2000mg daily and tegretol cr 400mg daily. And I am still no better I am seing the neuro next week. Sometimes I see spiders running over my arms. I know they arent there, but its one of my warnings. I also get a tingling feeling in my feet. And someties I just dont feel real at all. I have these motor type seizures sometimes, and I have had alot of seizures this year that last over 20 minutes. When I have seizures I feel alone I can hear and its like I am seeing lightening.
If you can help me please
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jamal

Experienced User , Rather EHEALTHy
Joined: 05 Nov 2003
Posts: 60
Location: oroville,Ca

Posted: 04-30-04 00:02am

Hello bumble,
I also had the same rtl. I had my first gm in 98, before that I was havin auras for 20 years. I had no clue waht was going on, until one day the aura went into the gm. After 4 neuros and alot of diffrent meds. I ended up at u.C.Davis and had the scar tissue removed in 2001. My szs have decresed and auras about 70%. I too lost my job and I don't drive anymore. Went back to my old job as a salesperson for 7 months then quit. I use to be the manager and buyer. It was to hard. So now I found something better that I like to do. I volunter at a asitit living. I help the activity director. I go 3 days a week for 4 hrs a day. I take the bus that picks me up at my front door for 1.25. My life has changed in the last 6 years. I even left that man I married in 98, 2 months later this all started. I'm now with this beautiful man i've known since high school. He has been w/ me for 5 years. The funny thing is he was not my cup of tea back then. Well I wish you luck. Sometimes I go on and on. God bless jamal
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