Hi Barbara!
Welcome to the group! I've been all of those, and some others :) The best thing is for her to see someone in neurology who specializes in epilepsy.
Trying to answer your questions in order:
1) Give the medicine up to a month to work/get in her system. After that, who knows--it could be the "miracle" drug, like Keppra was for me, or it might not work at all--it really is trial or error.
2) Depakote causes itching when you switch someone off/on it--you have to do it SLOWLY!! You can also get a rash. Depakote definitely adds weight on as well. I didn't realize that until I stopped taking it.
3) Medication can do both--lessen the amount of seizures, or get rid of them. Again, it's trial and error.
4) Can you get off meds? Probably not...I was told once 2 years seizure free, and my doctor would think about reducing my meds, and seeing how it goes. As adults, most likely you will never be seizure free.
5) I don't know if it's related to lymphoma...some people never know why it starts. If there's no history of brain injury, tumor, or anything else in the brain, etc...it's called idiopathic. I have a clump of cells in my brain that never formed correctly at birth. Also, in women, hormones play a huge role.
6) Another note about Topamax: it cause major memory issues!! Mostly word recall problems--I stopped taking it, it was so bad. Plus, it did nothing for my seizures.
Overall, a lot of this is quality of life. How much can someone take the side effects of a medication/amount of seizures in a month?
Hope this helped!!
elizabeth
----- Original Message -----
From: imbeez
To: epilepsy@yahoogroups.com
Sent: Tuesday, November 30, 2010 10:32 AM
Subject: [epilepsy] intro & looking for help please
Hi! My name is Barbara.
My 28 yr old niece was recently diagnosed with generalized epilepsy.
Her symptoms are myclonic jerks and passing out.
She has problems sleeping.
First they put her on Lamictal which gave her meningitis symptoms.
They changed it to Keppra, but she still had the jerks/seizures.
It was changed to Depakote last week, which made her itchy and gain weight
but the epilepsy symptoms stopped.
My niece had Hodgkin's Lymphoma in the past and itchiness was a major
symptom, so it is a concern and the doctor changed the medication.
Now she is back to Keppra 1,000mg twice a day and Topamax 25mg which will
increase slowly.
This is all happened in the last 3 months.
My questions are:
How long after taking medication does it take not to have seizures/black
outs?
Has anyone ever had problems with itching on any of the medications?
Does medication control it or just lessen the episodes?
Does anyone ever get well and get off medication?
She also has fibromyalgia from the trauma of stem cell transplant for
Lymphoma.
Is there any correlation with this and epilepsy?
I know everyone is different, but I would appreciate any information.
I have been researching online, but I find it better to talk to people going
through this.
They seem to have the most knowledge.
I am trying to prepare for her doctor visit on Friday.
Thanks for listening and would appreciate any help you could give me.
Barbara
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