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Any Temporal Lobe Eplieptics Out There?

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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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replied April 22nd, 2004
Experienced User
Hello
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/
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replied April 25th, 2004
Your Brain
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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replied April 25th, 2004
Experienced User
Bumble
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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replied April 30th, 2004
Experienced User
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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