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 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).
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/
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
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
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