New approach to Treating Drug-Resistant Epilepsy

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Profile picture for auroralm @auroralm

Thanks for sharing this. I know that the study participants all had temporal lobe epilepsy. Since my seizures are not focal, I wonder whether or how this technology could be applied to people like me. My seizures are also very infrequent, making them difficult to study. I have massive tonic clinic episodes followed by 3 to 5 hours of unconsciousness, once every couple of years.

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@auroralm Good Morning
My understanding is that this research applies to all forms of drug-resistant epilepsy, not exclusively temporal lobe epilepsy. My guess is that the initial testing focused on patients with temporal lobe epilepsy because this type demonstrates a higher incidence of drug resistance, representing approximately 60% of all drug-resistant epilepsy cases.
Have a nice Sunday!
Chris (@santosha)

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What about autoimmune refractory epilepsy? I have had refratory temporal lobe epilepsy for over 20 years. 4 years ago, diagnosed with GAD65 autoimmune mediated epilepsy or possibly encephalitis. Apparently, there is no cure. What's so frustrating is the lack of knowledge about my situation, and autoimmune epilepsy. Have tried just about every anti-inflammatory med available (steroids, Cellcept, various infusions (including IVIG, Actemra injections) and nothing helps. My doctors at NYU and Mayo are stymied,
particularly with respect to the GAD65 aspect . I rarely see autoimmune epilepsy discussed, much less in context of GAD65. Hopeless and defeated. Cognitive decline accelerates as brain damage from seizures and many strong meds continues.

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Thank you thinking of me, the article is an interesting read. My sons doctor is referring him to UCI for in-patient study. She said he would benefit better with possibly having surgery.

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Profile picture for Lisa Lucier, Moderator @lisalucier

Thought I'd invite into this discussion some others who've talked about drug-resistant epilepsy and may be interested in this article about a new study bringing hope for this type of epilepsy @auroralm @kimroepke @joseph1963 @jakedduck1 @earlylonghauler @lovingtruth83.

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Thanks for sharing this. I know that the study participants all had temporal lobe epilepsy. Since my seizures are not focal, I wonder whether or how this technology could be applied to people like me. My seizures are also very infrequent, making them difficult to study. I have massive tonic clinic episodes followed by 3 to 5 hours of unconsciousness, once every couple of years.

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Profile picture for Chris Gautier, Volunteer Mentor @santosha

Hi @closetmonster93
Happy to hear from you again.
I understand that this new study specifically focuses on patients who have drug-resistant epilepsy.
Have a nice weekend!
Chris (@santosha)

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Good information to know, as I have read the study, and it is being used for other neurological disorders and psychiatric disorders as well. Hopefully an option, for those of us that are drug resistant.
Thank you.

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Thought I'd invite into this discussion some others who've talked about drug-resistant epilepsy and may be interested in this article about a new study bringing hope for this type of epilepsy @auroralm @kimroepke @joseph1963 @jakedduck1 @earlylonghauler @lovingtruth83.

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Hi @closetmonster93
Happy to hear from you again.
I understand that this new study specifically focuses on patients who have drug-resistant epilepsy.
Have a nice weekend!
Chris (@santosha)

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@santosha Is this just a treatment for refractory epilepsy, or is this a treatment they are exploring for various types of epilepsy?

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