New approach to Treating Drug-Resistant Epilepsy

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

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)

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.

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.

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.

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.

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.

@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. @lisalucier could the Mayo Clinic perhaps provide additional details?
Have a nice Sunday!
Chris (@santosha)

Hi @cathy5161
I am sorry to hear about your condition. Indeed, it is the first time I have heard about autoimmune epilepsy in our group. My knowledge of this kind of epilepsy is limited, never having heard or read about it before. Curious to know more about it, I have searched some sources and share some links with you and the group.
https://www.epilepsy.com/causes/autoimmune
https://www.cureepilepsy.org/webinars/identification-and-treatment-of-autoimmune-epilepsy/
Have you consulted with an immunologist yet? I am currently dealing with some inflammation issues myself, and my doctor has referred me to an immunologist for further investigation. I understand that an immunologist is one of the medical specialties that treat autoimmune disease, which might be beneficial in your case.
I understand how hard the epilepsy journey can be. It is a disease with no cure, presenting many challenges for many of us. When I began my epilepsy treatment in 2019-2020, I also experienced feelings of defeat and hopelessness. The support of my neuropsychologist, who coincidentally has an autoimmune disease herself, was instrumental in helping me regain my strength. Perhaps similar psychological support could be helpful for you as well?
Sending you positive energy and wishing you the best.
Chris (@santosha)