@santosha
Thank you, Chris, for taking the time to respond to @ugj’s questions. Your insights are greatly appreciated.

@ugj
I find myself deeply curious about your diagnosis of SHE (Screaming Hypermotor Epilepsy). I’m eager to delve into the details and gain a better understanding of your experience. It appears that the most prominent manifestation of your condition is the intense screaming. Is that accurate? Perhaps it stems from the fact that these episodes are often nocturnal and can occur multiple times throughout the night. I sincerely encourage you to discuss this SHE diagnosis with your doctor for further clarity.

Similar to other seizure types, hypermotor seizures can be notoriously resistant to medication. I believe about a third of SHE patients are medication resistant. However, let’s hold on to hope for brighter days ahead. I experienced my own battles with uncontrolled seizures for an exhausting 45 years, until a fresh perspective from a new neurologist led me to switch to Carbatrol, a time-released version of carbamazepine that is akin to Tegratol. This physician advocated for seizure patients to avoid generic medications when possible. Interestingly, this drug is also prescribed for hypermotor seizures.

It can take time and patience to discover the right treatment tailored to your needs. If you’re currently on a non-extended release form of Keppra, it might be worthwhile to explore an extended release option and observe any changes in your condition. When I transitioned to the extended release formulation, it was the singular change in my regimen that ultimately led to the cessation of my seizures after 45 long years. Of course, it’s impossible to prove definitively that it was the medication alone that made the difference. Perhaps my seizures were destined to resolve on their own.

Wishing you all the best on your journey to wellness,
Take care,
Jake