New approach to Treating Drug-Resistant Epilepsy

@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

@laura1961
Hi Laura,
I'm actually outside the United States—I live in São Paulo, Brazil.
After many unsuccessful treatments here, I decided to explore options in the U.S. and had an online consultation with Mayo Clinic. However, traveling to continue treatment in person at Mayo Clinic became impossible due to COVID-19 restrictions. Shortly after, I was fortunate to be referred to an epileptologist here in São Paulo, whom I mentioned in my previous post in this discussion.
Chris

@laura1961
Hi Laura,
I found this resource from the Epilepsy Foundation really helpful for understanding temporal lobe epilepsy: https://www.epilepsy.com/what-is-epilepsy/syndromes/temporal-lobe-epilepsy
It helped me understand why I struggled so much with medications and controlling my seizures after being diagnosed with mesial sclerosis in my left hippocampus. Since we share similar diagnoses, you might find it useful too.
Chris

@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

@santosha I have been listening to Dr Omar Danoun who apparently worked at Mayo, I am thinking of trying to book an appointment with him online maybe. There is also a good Epileptologist here in Brisbane Australia I may look at seeing too. I was nearly going to give up on Drs.

@santosha Thank you yes I will have a look at that. I have looked at that site over the years so may have seen it. I have also been looking at Cure Epilepsy site recently which I only started looking at the last few years.

@santosha Hi Chris we do have similar life experience's, my seizures started at 45 & I am now 64. I have been listening to Dr Danoun & my GP last week who both say there is probably nothing more I can do. I even saw on Dr Danouns web page that some people that have Drop seizures end up in a wheelchair or having to wear a helmet the rest of their lives when going out mainly probably to stop damage from the falls. That's what I have come to the conclusion of now even after having hope some new drug or operation may have come about since 2012 when I stopped all drugs. I may/will give an Epileptologist like the one in Australia or Dr Danoun who seems to be the most knowledgeable online another go. Especially after reading this message from you. Diet is a big thing also, although trying a diet for seizures & osteo gets hard to navigate. I recently read that you should take 4-6 Prunes a day for osteo but may not be good on Carnivore. It has been hard to stop all sugar, carbohydrates & alcohol, although I have managed it for the 1st year. I have then been on and off other things like vege's, salads, some carbs (like croissants occasionally which is not suppose to be good), chocolate off and on & wine occasionally. I think I have done quite well really as I no longer really eat bread, pasta etc. I don't have a drink at night with dinner like had been doing over the years. Although it has not really made any difference in the amount of seizures monthly I have had. I have had a lot of stress & the seizures over that year doubled. I do not have auras & with these Drop seizures I just drop no idea at all when they will happen. I have an idea they happen around the end of each month or into the beginning of the next month, the same time my hormones once changed & I had my periods. Although I can have them in the middle.

@laura1961
Good morning, Laura!
Thank you so much for sharing those extra details—it really helps me understand your epilepsy journey better.
When we have secondarily generalized seizures (which include drop seizures, also known as atonic seizures), we may not always remember the focal seizures that happened right before. This has already happened to me when I had tonic-clonic seizures!
A complete diet change can be very overwhelming. I took it slowly, making one change at a time so I could see what actually helped reduce my seizures. I started by cutting out gluten—which was challenging enough on its own!—and that alone reduced my seizures by about 60%. Later, I stopped eating carbs at dinner. All that was done with my doctor's supervision.
Keeping a daily diary when I was trying to identify and better manage my seizure triggers based on the Andrews-Reiter approach — https://www.andrewsreiter.com/ — was incredibly worthwhile and taught me so much about what worked and what didn't.
Since hormonal changes are a well-known trigger for women (these are called catamenial seizures), my doctor worked with my gynecologist to find a solution. They suggested I take birth control pills continuously for 5-6 months without breaks to stop my periods during these months. This has also helped reduce my seizures. This worked for me since I'm not yet in menopause.
The key for me was making these changes gradually, one at a time. If my doctor had recommended everything at once, I probably would have felt too overwhelmed to stick with it. Taking it step by step made it manageable and helped me understand what was actually making a difference.
I really hope you find a specialized epilepsy doctor soon who will give you the thoughtful care you deserve. Keeping my fingers crossed for you!
Chris

@laura1961
Hi Laura,
Cure Epilepsy is excellent and very trustworthy, worth exploring. They have a podcast called "Seizing Life" that I really enjoy:
- Welcome to Seizing Life
Cure Epilepsy
https://www.cureepilepsy.org/seizing-life/welcome-to-seizing-life/
Mayo Clinic also has dedicated epilepsy content you might find helpful:
- Epilepsy
Mayo Clinic
https://www.mayoclinic.org/diseases-conditions/epilepsy/symptoms-causes/syc-20350093
Besides the Epilepsy Foundation, both are great resources as you navigate your journey.
Chris