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
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).
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