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DiscussionMore than 90% of my seizure happened when I was sleep
Epilepsy & Seizures | Last Active: Aug 1 8:41am | Replies (36)Comment receiving replies
Replies to "Hi Chris, Thanks so much for all the information! You mentioned that you tried 5 drugs..."
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My pleasure, @jgu! Happy to answer your questions.
Between 2019 and 2020, I tried five different AEDs: Lamictal, Tegretol, Trileptal, Gabapentin, and Vimpat. I took each medication separately for at least three months, except one that triggered my first tonic-clonic seizure. Just one AED fully controlled my seizures, but it caused severe insomnia that made it unsustainable. The others reduced my seizure frequency but came with significant side effects that greatly impacted my quality of life. During this period, I was treated by psychiatrists and neurologists who, unfortunately, didn't take an individualized approach to my care.
In 2021, I switched to an epileptologist who prescribed pure CBD (Epidiolex in the US). While it hasn't completely controlled my seizures, I felt significantly better on this medication and was able to reclaim my life. However, last December, I experienced considerable stress due to my parents' health issues, which lowered my seizure threshold and required additional medication. My doctor added Keppra, which I've now been taking for five months with good seizure control.
I'm surprised to hear that your seizures haven't decreased with Keppra after 20 days. Most of the AEDs I tried in 2019-2020 (except the one that caused the tonic-clonic seizure) reduced my seizures within the first three weeks. I am not a doctor, but no seizure reduction could indicate that your dosage needs adjustment or that this particular medication may not be effective for you. I'd strongly encourage you to discuss this with your doctor.
Finding the right medication can be challenging and requires both patience and resilience. Don't give up – persistence is key in this journey.
I hope your upcoming tests provide your doctor with valuable insights that lead to an effective treatment plan for you. Please feel free to reach out if you have any other questions.
Keeping my fingers crossed for you!
Chris (@santoha)