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Temporal Lobe Epilepsy
A MyEpilepsyTeam Member asked a question 💭

Who on here has temporal lobe epilepsy? What treatments have you tried and what has worked the best for you?

posted August 7, 2019
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A MyEpilepsyTeam Member

Hi Kathy,

I know its frustrating. I have 3 types myself.

I do know there is dozens out there and specialists are still zooming in to identify and catogorise epilepsy still to be able to give more specific medication for your type. (or combinations like with me).

This is all I do know and wrote down for myself on notes I keep to help me :

There are six main types of generalized seizures:
Generalized or Unknown Onset Tonic-Clonic
Generalized Absence
Clonic
Tonic
Focal or Generalized Atonic
Focal or Generalized Myoclonic

There are about a dozen types of epilepsy, and the type you have plays a role in which kind of seizure you may have.

All those I know of is :

Myoclonic epilepsy (ME)
Generalised epilepsy (GE)
Epileptic spasms (ES)
Lennox–Gastaut syndrome
Juvenile myoclonic epilepsy
Rasmussen's encephalitis
Jeavons syndrome
Myoclonic astatic epilepsy
Rolandic epilepsy (RE)
Progressive myoclonus epilepsy
MERRF syndrome
Frontal lobe epilepsy (FLE)
Idiopathic generalized epilepsy (IGE)
Landau–Kleffner syndrome
Childhood absence epilepsy
Temporal lobe epilepsy (ELP)

Several different types of seizures can be seen in Dravet syndrome, the most dangerous of which are tonic-clonic seizures, sometimes called a generalized seizure or a grand-mal seizure.

.Just some information.
Hope it helps you a bit.

I have details on each so let me know if you want that maybe.

Hope all goes well.
Good luck and trust me once they have the right combination its still difficult however its also much easier to get at least some ...better control.

:)
Es

posted August 21, 2019
A MyEpilepsyTeam Member

I have TLE with mostly focal seizures (fully aware). Had them most of my life but was officially diagnosed last year and now treated successfully with Keppra (Levetiracetam). Went from 350 seizures per year to about 20-30 and hopefully 0 with a recent dose adjustment. The ER (extended release) now seems to work even better. Tried Topiramate first but had unbearable side effects and it didn't work as well. Keppra does make me really sleepy during the day but way better than having seizures, and my short-term memory has greatly improved. Hope you get things figured out with your neurologist, you deserve a full life.

posted August 7, 2019
A MyEpilepsyTeam Member

Goodmorning I hope all is well with everyone today 😃. Lol I realized I’m making myself older and wiser than I already am lol I apologize I mean I’m 49 years old. Oddly I have been on tegretol 1600mg and Dilantin 400mg since I was 8 years old. Last year I started getting REALLY BAD STOMACH ACHES AND FOR THE FIRST TIME GOING TINGLY NUMB on the LEFT SIDE OF MY BODY!! My eye sight went from 20/20 to a “stigmatism and near sightedness with light sensitivity”. Because it’s my left side I have ended up in emergency quite a few times now (including lastnight). It’s been mentioned to me a few times by a few different doctors, but lastnight I moreless recurved confirmation from my own doctor in emergency that i have “hyponatremia” as a long term side effects of the tegretol. Lol I have to eat more salty foods, drink less fluids, have more fatty foods and more sugar. In all honesty I sat there staring at the nurses and doctors and finally told them “HOW IF I HAVE NO YEARNING TO EVEN Et because OF STOMACH ACHES? Maybe this is one of those time MAYBE I REALLY SHOULD CONSIDER CBD? It’s hard to believe because I used to play, referee and coach hockey, baseball and soccer!! So now I’m trying “Powerade” with something called “gastrolyte” as an additive (to increase my electrolytes). With the advancement of technology I was thinking “maybe the laser surgery” maybe a good thing to look into for myself and my future? Mostly because I really didn’t want my right front brain lobe (with mixed seizures) to be cut out. I presented the option when I was 40 years old, but all my children were still young and home. Now their about to all fly the coup and I heard of the laser brain surgery. How do people feel about the laser surgery and is it helpful or hurtful? Thank you and PLEASE ALL HAVE A VERY GOOD DAY TODAY

posted August 12, 2019
A MyEpilepsyTeam Member

I have left Temporal Lobe / Complex Partial Seizures.

I’ve had brain surgery and done the VNS

posted August 10, 2019
A MyEpilepsyTeam Member

I have recently been diagnosed with TLE. Currently on
lacosamide (Vimpat). Controlling the seizures so far, so fingers crossed.

posted August 9, 2019

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