Barbara,
I have had EP for 49 years; have not had any surgery.
I have been on Dilantin and Phenabarb for over 20 years.
My last sz was 4 years ago and the sz before that was
4 years.
I haven't grown out of it. But my meds keep my sz at bay.
Everyone is different and you just have to try different meds
for different people. It does take your body awhile-- may
be a month to get used to a different med-- and everybody
reacts in different ways.
I was DX when I was 30. I had 3 daughters 2, 4, and 6 plus
a husband--now ex
I agree it does help to talk to people who have EP because they
have gone thru it. It also helps being in this group because
everybody is different.
Millie
----- Original Message -----
From: Pastor Joseph Groth
To: epilepsy@yahoogroups.com
Sent: Tuesday, November 30, 2010 4:14 PM
Subject: Re: [epilepsy] intro & looking for help please
Hello Barbara,
The medications you listed are all some of the ones I have been on.
I was diagnosed at the age of 2 with severe Epilepsy. I was on the
child dose Dilatin and phenobarabitol. By age 20 the meds had to be
changed. When I was on Depakote it caused itching and I had trouble
sleeping. I was on other meds that I can't remember the names of,
that didn't work at all. Since 2000, I have been on Keppra 750mg
4 a day. After brain surgery in 2001, I was put on trileptal along
with the Keppra. The Dr. weaned me off the trileptal but kept me on
the Keppra. I went 4 and a half years seizure free. In 2006 my seizures
began again and was put on Dilatin also but it didn't work. Now I am
still on the Keppra and also take Lamictal 100mg 4 a day. The Lamictal
gives me the side effect of tremors. But since I was reduced on the
Lamictal from 6 a day to 4 a day my tremors have stopped. I ocassionaly
have a small seizure but with my nerve stimulator and both medications
I have less seizures than before. It does take a while for your system
to get used to the new medications before you can notice and changes.
That's how it has been for me. It's not the same for everyone.
Joseph
--- On Tue, 11/30/10, imbeez <imbeez@comcast.net> wrote:
From: imbeez <imbeez@comcast.net>
Subject: [epilepsy] intro & looking for help please
To: epilepsy@yahoogroups.com
Date: Tuesday, November 30, 2010, 10:32 AM
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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