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Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

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Hello, my name is Karen and I have been suffering from temporal lobe epilepsy for most of my life. I had spinal meningitis when I was 4 months old and it left scar tissue on my right temporal lobe.

After suffering for 15 years from simple partial seizures and never knowing it, I went into a grand mal seizure. This eventually led to the discovery of the scar tissue and diagnosing me with epilepsy.

At age 17 I had a right temporal labectomy at UCLA. The seizures stopped for nine months and then began again. I discovered I was suffering from Depakote poisoning and after the Depakote dosage was cut down the seizures stopped.

Two years ago my seizures began again. In the last year I have had three grand mals and countless numbers of simple partial seizures. Anymore the seizures seem to happen mostly in my sleep and just before my menstrual cycle.
 
Hi Karen, welcome to CWE!

It sounds like your seizures are catamenial (that is, hormone-related). Are your docs keeping that in mind while treating? There are some meds that are targeted specifically for catamenial epilepsy.

Do you keep a seizure diary? A lot of folks here at CWE have found it useful for tracking not just seizures, but also finding out what triggers them. Hormones can be a factor (see above), also things like metabolism, fatigue, flashing lights, stress...

I hope you feel free to explore all the forums here, ask questions, chat, vent etc.

Best,
Nakamova
 
Hi Karen,

Great to have you here. You have found the best epilepsy forum that exists. It was made by Bernard out of love for his wife Stacy.

I am sorry that you have had a bad time. I am allergic to Depakote, as well.
 
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