[epilepsy] Re: intro & looking for help please

 

Hi Barb,

Welcome to the group (smile). I've had epilepsy for 35 years, I'm young, only 53 years young. My seizures never where able to get under control with meds. That happens to about 25% of us with epilepsy. 4 years ago had surgery which to this day has stopped my seizures.

A good web site with allot of imformation concerning epilepsy is my.epilepsy.com Also, the Epilepsy Foundation of America you can see at efa.org There are branch offices in cities across the country. Their are support groups in different areas also. I go to a local epilepsy support group each month by me.

Keep in touch (smile), you are among friends here. Take care, keep a smile on your face!

Steve

--- In epilepsy@yahoogroups.com, "imbeez" <imbeez@...> wrote:
>
> 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
>
>
>
>
>
>
>
> [Non-text portions of this message have been removed]
>

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