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My daughter was diagnosed with Epilepsy on 2021 after a bad accident
The neurologist put her on Keppra but had to stop taking it due to too many side effects
She started Lamotregine but continues having seizures.
Her Epileptologist added Zonasomide to the Lamotregine and it stopped her seizures.
Unfortunately she had too many side effects including losing a lot of weight (she was 5’2” 112 lbs and gradually turned to 99lbs) with no appetite.
She also experienced a kidney stone.
Her doc… read more
Answer Summary
A parent questioning whether to proceed with SEEG testing and possible brain surgery for their daughter received an outpouring of personal... Read more
I had good control but not total control so I had a left temporal lobectomy and now I'm 25 1/2 years seizure-free.
@A MyEpilepsyTeam Member
I have had the SEEG. They drilled holes in my head and placed wires on my brain. For the first couple days I wasn’t allowed to get out of bed. Then I was allowed to lay in bed or sit in a chair. They both had alarms if I were to get up. After 4 or 5 days I could finally walk around. Here is a picture of me during my SEEG.
I have had surgery and I am very happy with the results. They were able to reduce my medication (which never controlled my seizures). I had been taking medication four times a day and still had breakthrough seizures. Now I’m less and only twice a day. I have had a couple of seizures since my surgery but they are definitely more controlled and less frequent.
My prayers are with you and I know that whatever you choose to do, God will be with you 👍❤️🙏
I Took Keppra Several Yrs Ago. I Didn't Have Any Seizures While On It Because I Slept All Day, All Night & Lost Weight. That Med Made Me A Zombie, So I Told My Neurologist, " I'm Not Taking It Anymore." In 12/2023, I Decided To Stop Taking My Am & 12 pm Vimpat. I Was Having 5-6 Seizures Every Month. Since That Time, I Have Only Had 5 Seizures So Far. All Meds Don't Mix Well With Other Meds. My Nightly Fycompa & Clobazam Are The Best, But The Vimpat Wasn't Helping. My Neurologist Was Proud Of My Decision. I Will Never Have Surgery. Some People Do Have Successful Surgery, While Many Others Seizures Have Gotten Worse
@A MyEpilepsyTeam Member - I had brain surgery on the left side of my hippocampus after 5 AEDs over four yrs was unsuccessful in helping me fight seizures. Nine months after surgery I started to get control of my seizures. My last seizure was Oct 2016. Still taking 2 AEDs (Dilantin & Vimpat; both are narrow spectrum AEDs. I'm so happy to have had my brain surgery.
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