@laura1961
Hi Laura,
Like you, I have temporal lobe epilepsy with a small amount of damage (mesial sclerosis) on my left hippocampus, caused by an accident when I was 5 years old. But my seizures didn't start until adolescence because of hormonal changes. When epilepsy is acquired in life, it can stay silent until seizures begin to manifest—just like what happened with me.
When my seizures started in adolescence, they were very mild—just occasional auras. Because of lack of diagnosis and treatment, my auras evolved into complex partial seizures that became more severe over the years. I wasn't diagnosed with epilepsy until I was 48 (I'm 55 now).
Seizures starting in the temporal lobe with damage to the hippocampus or amygdala are known to be more difficult to control. I'm already on my 7th medication. Some fully controlled my seizures but caused severe side effects, requiring changes. One triggered my first tonic-clonic seizure. Others didn't control my seizures well and still caused very unpleasant side effects.
At one point, I wanted to stop all medications—so I understand exactly how you feel. Thankfully, with support from my husband and neuropsychologist, I kept persisting until I finally found a doctor who could help: an epileptologist, after seeing many neurologists and psychiatrists before him.
Observing my struggles with previous AEDs (anti-epileptic drugs), my epileptologist introduced CBD (cannabidiol, one of the main active compounds in medical cannabis) along with trigger management and dietary approaches. Though it didn't control 100% of my seizures, it reduced them greatly and I felt well again.
Unfortunately, in December 2024, I had to restart a new AED (Keppra) alongside my CBD after experiencing status epilepticus triggered by extreme stress: my father was diagnosed with cancer and my mother, who has Alzheimer's, had a bad fall requiring surgery—all in the same week. But my doctor has kept my dosage very low (children's dosage) because of my sensitivity to these medications.
Please don't give up! I'm not a doctor, but your seizures might have evolved from complex partial seizures to drop seizures because of lack of treatment—just like my seizures evolved due to lack of diagnosis and treatment.
I'm curious: Do you have auras before your complex partial seizures? And do the drop seizures you mentioned start immediately, or are they an evolution from a complex partial seizure?
Chris