Getting through the unknown.
I had my first tonic-clonic, (grand mal), seizure at the age of 25, in October of 2009. After a second, then third seizure just a few days later, I was diagnosed with epilepsy.
Since then I have tried almost every cocktail of anti-seizure medications, none of which stopped my daily seizures and which have given me many side effects over the years-confusion, an inability to communicate effectively (difficulty retrieving words), short term memory loss, occasional hallucinations, inattentiveness, an uneven gait, wooziness, poor balance, shaky hands and general unsteadiness. I was told I MUST take ALL these seizure medications to avoid long-term brain damage.
I have been hospitalized four times at UCLA Hospital, (average two weeks per stay), to monitor my epilepsy and four times have had brain surgery. Even the surgeries failed to improve the frequency of my seizures and, in fact, the seizures and other symptoms got worse.
Next I was experiencing a new type of seizure I was having, called “Complex-partial seizures/with wandering” in which I unknowingly would attempt to leave wherever I was in a very dazed state. Due to that I needed to be supervised constantly (doctor’s order), to the point that an alarm system was installed in the home to alert the family if an external door is opened. The loss of almost all independence was devastating.
At this point marijuana became even MORE indispensable. Cannabis was the only thing that helped ease the terrible side effects. It was remarkable - about half an hour after taking meds, I would become disoriented, out of it, and at a loss for thoughts. My parents and husband would encourage and remind me to smoke and it was like a miracle. The side effects would disappear!
In 2015 I was the first patient at UCLA to receive an implanted device in my brain called the RNS. It was helpful but I continue to be on anti-seizure meds. Some cause agitation and irritability. The marijuana also helps greatly with these by products of anti-seizure meds. It is so effective that my neurologist even put cannabis on my official UCLA medical list.
This has been a God-send for not only me but also our family.