Hi Barbara
Well I don't know about the corelations between the epilepsy and lymphoma but, I
do know that the topamax will help her lose some of the weight that she put on.
But, the doctor will take her off of it if she loses more than 50lbs in 6 months
or so.Thats where things get interesting.After being on topamax I lost 50lbs in
less than 6 months so they took me off.Well I figure that it messed with my
metabolism cause I weigh 40lbs more than I have weighed in my whole life.
I hate to say this but, the issue of will she ever get over them is a hard 1
but, I do know they can be controlled but, I dont think they will go away
completely.(well there is brain surgery but, I dont know if that would work in
her situation). I went the last year and a half without any gran mals till about
a month ago and the week after I got my second denial from ssi. The best thing I
can say is listen to her doctor very carefully and take notes if need be and
make sure she takes her meds on a regular basis cause if her medication levels
are off it may cause her to have seizure. I wish you and your neice the best. I
was diagnosed 8 yrs ago at the age of 30 so I can understand your niece is
prolly going through alot right now.
Keep your head up and with time things will be get better!!!
________________________________
From: imbeez <imbeez@comcast.net>
To: epilepsy@yahoogroups.com
Sent: Tue, November 30, 2010 9:32:25 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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