Temporal Lobe Epilepsy

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New Member

Date Joined Jul 2011
Total Posts : 1
   Posted 7/20/2011 8:58 PM (GMT -7)   
Hey there! I am an author writing a novel about a character who has temporal lobe epilepsy. I strive to be accurate in my stories and would like some insight into this condition from people who actually have it. Please if you have this condition or know someone who does, contact me because I would love to pick your brain.

Some things I need to know...

Is this condition successfully controlled with medication?

Without the use of medication, would it be possible to avoid seizures if your mind is engaged and concentrated (for example: could someone be a physician who suffers from this condition and still be able to work without fear of having a seizure?)

Has anyone heard of someone with TLE developing a split personality? (I have read that this can happen in rare situations)

What does it look and feel like to have a simple partial seizure?

Anything else I might need to know to capture details and bring the condition to life would be extremely helpful.

Thank you for your time!

New Member

Date Joined Jul 2011
Total Posts : 6
   Posted 7/27/2011 9:17 PM (GMT -7)   
My TLE was diagnosed about ten years after onset of symptoms, which were 'treated' as behaivoral, until I met an MD who develped the hypothesis that the brain might play a role in behaivor. I had neurosurgery twenty years previous to onset of symptoms. Answers to your questions.

Yes, it is well controlled with Lamictal, and in later years, Lamictal with Keppra.

No. I was in graduate school and my mind was in sixth gear from 4am to 10pm.

I have not heard of anyone developing a split personality, but I did have behavoral problems following onset olf symptoms.

It looks and feels like nothing. I look low and to the left and space out, returning to awareness after 30 sec. to 3 min., which is an eternity when I am not responding to verbal or visual responses from the person I was talking to. I just space out, then become aware, am initially confused and have no recollection of the topic or subject of the conversation.

I'd like to add that I have periods of confusion, sometimes in public, which causes problems. When a man missing a leg, the public doesn't expect him to run. If he's missing a right hand, they dont' expect to shake hands normally. But, when a disability is hidden by the seven bones of the skull, when one person sees you, they think you are just like them and make sarcastic remarks/actions when I'm confused.

New Member

Date Joined Aug 2011
Total Posts : 1
   Posted 8/5/2011 4:43 PM (GMT -7)   
I have temporal lobe epilepsy. It started when I was in my thirties and was well controlled under medication for 4 years with one med. For the past three years, it has not been well controlled as I have been having 1-2 per week. I am taking 4 drugs including one non FDA one which is a lifesaver as it controls the cluster seizures I was having. I would be having many more without meds.
It is possible I have catamenial epilepsy related to my hormones too but seizures in between.

I worked as high level manager in Fortune 500 companies during all of this but resigned when the seizures became refractory as I could not remember things happening in meetings if I had a seizure. Surgery unfortunately was not an option. So I continue to hope for new treatments and options.

For me, I no longer have grand mal seizures. I may make a noise or hiccup. I space out for 30 sec to a minute and it takes me 10 - 15 min to come to. I don't remember what happened beforehand. I sometimes shake. Sometimes I am just confused which we don't know if it is a seizure or drug side effect.

I have not heard of split personalities either

Regular Member

Date Joined Feb 2005
Total Posts : 310
   Posted 8/8/2011 7:29 PM (GMT -7)   
Do you have an aura before having a seizure? I use to always have a fluttering in my stomach and fear would come over me. I had a Right Temporal Lobe Lobectomy in 2002 and have been seizure free since. I have had a few episodes where I wake up in the middle of the night and smell something like a smoke smell and sweet at the same time. It's weird to think you smell something that is no really there. I mentioned this to my neurologist and he said it was probably a simple partial seizure, not what I wanted to hear. I have had temporal lobe epilepsy since I was in elementary school. I can handle the auras as long as the seizures never come back! I still take lamictal as my safety net.

Regular Member

Date Joined Jul 2011
Total Posts : 60
   Posted 8/26/2011 7:47 AM (GMT -7)   
I've had Temporal lobe epilepsy since i was 14 and i'm 43 now.
I'd have times of autisum where i'd do things and new nothing about it, there's 135 seizures of different kinds and TLE is the no'1 rarest and just 6 surgeon's in the uk know how to deal with it concerning operations.
I was diagnosed at 18 with having schizophrenia and it was'nt that i'd got it was TLE which is identical to it in behaviour and it was one of those surgeons who confirmed it, when damage from wrong drugs was to late.

It causes states of ragging temper, violence, loss of memory which can last from an hour up to weeks and can cause your mind to revert back to younger days and all this happens while we're in an autisum state.

I take alot of drugs not just for the TLE but also grandmal epilepsy and todds-paralasis which the seizures have caused and mine are uncontrolable.

Each and everyone of us with TLE will behave differentley but the behaviour i've put is what i suffer.
Diagnosed - Raynauds Phenomenon - Psoriasis - Lupus - Scleroderma
Antiphospholipid Syndrome/SLE - Sjogrens Disease - Hypothyroidism
Sytemic Lupus Erythematosus - Discoid Lupus Erythematosus
Megaloblastic Anaemia - Autoimmune Disease - ANA & ENA (High)
Epilepsey - Manic Depression - Bipolar

Medication - Hydroxychloroquine (Plaquenil) + Other Medications

New Member

Date Joined Jan 2012
Total Posts : 1
   Posted 1/15/2012 4:20 AM (GMT -7)   
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