Welcome, Barbara!
I'm sorry your niece is having a difficult time, but it doesn't surprise me. Epilepsy meds are famous for side effects, and it's a rare individual who has none. The best most of us can hope for is that we have bearable ones. I am super-sensitive to all the AEDs I have taken. I am 44 and have always had epi. I am currently on 250 mg. of Keppra and finally have complete control of all my szs without debilitating effects, but the pharmacist told me he was baffled that I could get complete control on so little med.
I won't lie; it took until last year for me to get this level of control, and I was first put on phenobarital as an infant. AEDs can only treat epi, not cure it. It's much like insulin is to diabetes.
Sadly, too, some never have complete control, and at 28, she is highly unlikely to "outgrow" it. She'd have a much better chance if she were an infant or young child, but excellent control is still a possibility. I encourage learning of any and all possible triggers, too. I have learned that managing and avoiding triggers is about 90-95% of my epilepsy management. Things such as sleep loss and disturbance, illness, stress, anxiety, and hormonal disturbances are common triggers. Sometimes even things in the daily diet, such as gluten, alcohol, or caffeine, can be triggers, too.
I also strongly suggest that she take extra Vitamin D, since AEDs deplete it. It may help her fibro, too.
I hope this helps! Good luck, and please feel free to ask any other questions at anytime.
LIZ in RI :)
--- 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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