Hi Barbara, Many folks have shared much so far. May I add this for you
regarding
""She also has fibromyalgia from the trauma of stem cell transplant for
Lymphoma. Is there any correlation with this and epilepsy?""
High levels of oxidative stress, lymphoma, fibromyalgia and even seizures
may be linked to being dehydrated and overly acidic.
Does your neice drink plenty of water?? as in half her body weight in ounces
daily??
Check out this Lymphatic information www.Acid-Imbalance.com and read the 2
online documents available at www.brainadvance.org
under the "Kangen" tab on left side of home page. Both are good and 1 of the
2 docs deals with detoxifying and hydrating the brain. Drop me an email if
you want more info. Pat D.
Aina & Pat DeLorenzo
Sharing Better Health:
<http://www.thekangenwatersecret.com/> www.TheKangenWaterSecret.com
Get the amazing free E-Book!
_____
From: epilepsy@yahoogroups.com [mailto:epilepsy@yahoogroups.com] On Behalf
Of Elizabeth Quinn
Sent: Tuesday, November 30, 2010 4:15 PM
To: epilepsy@yahoogroups.com
Subject: Re: [epilepsy] intro & looking for help please
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 <mailto:epilepsy%40yahoogroups.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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