Older yet independent person with partial complex seizures after CVA. Anyone else?

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clairema

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Thank you for giving me the opportunity to post. My mother, an independent women in her sixties has had epilepsy since brain surgery a few years ago. It's gotten gradually but progressively worse, although always staying at monthly intervals bar once yearly where it all kicks off during a hospital stay.

She went into STATUS EPILEPTICUS two years ago, recovered well to live at home with help fully capable and functioning just observation needed. She has been suffering partial seizures on Left hand side. She is now on two drugs Lamictyl and Tegretal, also had two bad seizures in the last two motnhs. The seizure today was very unusual - her face swelled up and it was like she was talking nonsense not like the usual seizure where it's partial and she can tell you afterwards what happened and how she is with mild twitching although loss of power on lhs. Have contacted our wonderful neurologist but wondered whether seizures can change in nature and whether anyone else with partial complex seizures had better luck with two drugs or can i expect more ups and downs like what we've had?

It's a shame as my mother is the most independent, determined woman, recovered so very well from stroke after the aneurysm surgery. We are all on here I guess for the same reason, to know we're not alone and that there's a bit of hope. I hope that someone out there recognizes this, and that we can help each other out. Thanks
 
Hi clairema, welcome to CWE!

Seizures can definitely change over time, and/or in response to different triggers. It sounds like your mother may have had a complex partial seizure -- with that kind there is only partial awareness or consciousness, so the person doesn't always remember what happened or what they did or said. You might want to ask her neurologist about adjusting or changing her meds. Lamictal in particular can sometimes cause myoclonic twitching so if those symptoms have increased, it might not be the right med for her.

Does your mother keep a seizure diary? It can help with looking for specific triggers. Even though the CVA is the primary cause of her seizures, there can be secondary triggers that lower the seizure threshold. Fatigue is the #1 trigger, but there can also be triggers related to diet/metabolism, food sensitivities, hormones, blood sugar, illness/infection, etc.

It's great that you are taking care of your mother and finding ways to help her with her seizure control. She should know that she is welcome here at CWE too!

Best,
Nakamova
 
Thanks Nakamova,

Talked to the neurologist who doesn't want to change meds at this time as they were changed to two drugs just two months ago. She is recovering well from a scary seizure yesterday, just hve to be honest and say I'm running out of hope. Neurologist says seizures will never be gone completely. I see her on two drugs now, each time the drug works for a month then another seizure. They don't get milder although she just tolerates them better. Everytime she has one, i feel like I lose another tiny part of her.
I'm just so exhausted and hopeless which isn't like me, I just wonder do people with seizures like hers ever improve on duo-therapy or is it just a 50/50 chance? Need some hope!

Thank you for your supportive comments too by the way, much appreciated.
 
Epilepsy is so unpredictable, and the brain is so plastic, I don't know how the neurologist could say with certainty that your mother's seizures will never be gone completely. Though I know the process of ramping on and off can be tiring, there are more meds out there to try if her current regimen doesn't help.

Another possibility might be neurofeedback -- I don't know if this is an option for your mother, but it might help reduce the number of seizures if she is able to do the sessions. There are drawbacks -- NFB isn't usually covered by insurance, and it can be hard to find a practitioner. The plusses are that side effects are minor or non-existent, and the results tend to to be lasting even after the sessions are over. More information about NFB can be found here: http://www.coping-with-epilepsy.com/forums/f22/eeg-neurofeedback-501/ and I also recommend a book about it called "A Symphony in the Brain."
 
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