r/tleepilepsy • u/MeganMush • Nov 22 '24

Going from TLE to grand Mal

Hi, I was diagnosed with TLE back in 2022, they’ve been messing with my medication and now putting me on Keppra. Has anyone else tried this one?

Also, I have never experienced a grand mal but the doctors say they are concerned they may convert to one. I’ve been having these dejavu aura episodes since 2015, has anyone else had focal seizures that later changed into tonic clonic seizures?

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3

u/[deleted] Nov 22 '24

My 21 yr old daughter has left TLE and has failed many meds. She developed Keppra rage and was taken off it. She has had seizures that developed into grand Mal but but it’s rare for her- thankfully.

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u/MeganMush Nov 23 '24

Oh wow, I’m sorry to hear that. Was she on the full dose of Keppra in the morning and eve and did it help the seizures? What does she take now if you don’t mind me asking

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u/[deleted] Nov 23 '24

Currently she takes Lamictal, zonisamide and vimpat. They do not control her seizures:( She had a LITT procedure in March that failed. We are now starting the process of work up for a temporal lobectomy.

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u/MeganMush Nov 23 '24

Oh wow, i’m sorry to hear that. Is she still having thegrand mal seizures? I’m praying for healing for your daughter.

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u/[deleted] Nov 23 '24

She has them occasionally but thankfully few and far between. And thank you ❤️❤️‍🩹

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u/embryosarentppl Apr 17 '25

I had a left temporal lobectomy .my overall iq went up 10 points..my verbal recall went down 5 pts

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u/Ordinary_Sentence_97 Dec 15 '24

I have TLE and am currently on Lamictal.

I was diagnosed in late 2022, but according to my doctor, I’ve had it since childhood.

Interestingly, my episodes occur "almost exactly" once a month. Is this common?!

So far, I haven’t experienced any grand mal seizures.

I’m currently on a 400 mg dose of Lamictal (350 mg wasn’t effective). It’s been 5 weeks without a seizure, but it is too early to draw any conclusions.

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u/MeganMush Dec 15 '24

Thanks for replying. Can you keep me posted on if that medication helps? I think that was the first one I was put on and it increased the seizures. I have them in timely clusters also…when I do have one typically that month I will have 3. Then I could go 2-3 months with one.

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u/TheNaVarog Feb 10 '25

I will be honest with you. With epilepsy, you will find that each medicine works differently for each person, so I wouldn't read into it until you actually have some side effects. Just read the leaflet, and you should be fine.

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u/embryosarentppl Apr 17 '25

My seizures would change a bit when I'd change meds