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Hello
I am sorry your daughter is going through this, as is mine. My understanding is that Keppra is typically prescribed for generalized seizures (grand mals) and 1000mg twice a day is a very high dose. Trileptal is an example of a common first line med for partial seizures. There are many others available, however, which do not carry the same reputation for side effects as Keprra. We just took my daughter off of Keppra due to mood issues/suicidality/rage. It is always hard to pin down the cause for such feelings and I often feel like we are playing a guessing game but so far I do believe it was beneficial to remove Keppra.
Something to consider is PNES. I hate when people question if my daughter is "actually" having a seizure yet there is increasing evidence that anxiety and stress particularly when paired with PTSD can cause physiological symptoms that mimic epileptic seizures yet there is no evidence on an EEG. If a high dose of anti-seizure meds isn't working, I would be curious about this.
Has she had an EEG? Are you being seen at Mayo or elsewhere? A Neuro-psychologist might be helpful regardless.
Replies to "Hello I am sorry your daughter is going through this, as is mine. My understanding is..."
Hi @adoptivemother
Unfortunately, Keppra rage is a side-effect that many report while trying this medication, bringing much suffering to the patient and the family. I am sorry your daughter and you went through this with Keppra. How is your daughter doing now?
From my experience, I more and more observe that treatment with those medications is a very individual one, depending not just on the epilepsy type but also on other individual factors. Finding the right drug and dosage can be a process that requires much patience and persistence, not only from the patient and his/her family, but also from the doctor responsible for the epilepsy treatment. I well understand when you mentioned the feeling of playing a guessing game. I also had the same feeling many times, especially while being treated by neurologists who just followed a certain protocol and did not take into account certain individual aspects.
When my current doctor suggested taking Keppra, I got so scared because of all the stories of rage side-effect of this drug I have heard so often. But I see today it was the best alternative in a certain circumstance I had faced last December. Thank God, no Keppra rage and seizures so far in those 4 months, though I confess I am still struggling with other side-effects. My doctor, with all his patience and persistence, has been doing a fine-tuning process and reducing my dosage in a safe manner, little by little. I pray it works and ask God to continue with persistence!!
All my best to you and your daughter.
Chris (@santosha)
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She has had a couple EEG's and an MRI and nothing showed up. We are seeing a neurologist at Froedtert Hospital in Milwaukee. We are in the process of trying to figure out if something else is going on. Thank you for your reply! I feel like her Keppra dose is high for the symptoms she was having. We are going to discuss with Doctor but sometimes they are so stuck on protocols.