New approach to Treating Drug-Resistant Epilepsy

Hi @dannoyes
I hope this can be a helpful alternative for treating your epilepsy. You mentioned you've had little success with AEDs. Was this because they couldn't significantly reduce your seizures or keep you seizure-free, or did you experience side effects that were difficult to tolerate? I'm curious to know if you also have temporal lobe epilepsy like me and many other members of our group.
If you can, please share the news after you've talked with your Mayo team.
Wishing you all the best!
Chris (@santosha)

@santosha I also have left temporal lobe epilepsy and the AEDs have not significantly reduced my seizures and unfortunately their intensity seems to be increasing. The side effects of the other AEDs were so bad that the Mayo doctor's said that I was so overly medicated it could have killed me. When I went to the EMU I was on four AE medications which were immediately ceased. I went through some of the darkest days of my life as those drugs were withdrawn. I had terrible hallucinations and extremely intense seizure events. At the end of the EMU everyone around me said how much better I looked, the world all of a sudden became more clear, and I felt whole again. My Mayo neurologist added me back on two of the safer AED drugs and suggested I go through the Mayo PRC program. To make my situation more complex my epileptic seizures are crowded out at times by FND seizures. So whenever I have a seizure we have to video the event and then evaluate it, if possible, of being epileptic or non epileptic. This just "muddies the water" in my epileptic management. To be perfectly candid, I go through periods where I just laugh off my seizures and try to reduce their significance. I am starting to volunteer with my service dog at a local hospital. I try to focus on living my best life. However, there is this shadow that we all have to contend with that seems to haunt us a times which motivates us to continue to seek a way to reduce the impact of this challenge of life. I don't know much, but one thing I do know. Thank God for the @mayoclinic1 team and their love and compassionate care.

Good Afternoon @dannoyes
Thank you so much for sharing that additional information on your epilepsy journey with me and our community here.
When it comes to epilepsy treatment, I believe that the benefits should significantly outweigh the challenges we face with medications. I can relate to your struggles—I once took an anticonvulsant that left me feeling like a complete zombie, causing far more harm than good. Finding that delicate balance is crucial for both seizure control and maintaining our well-being.
I wish you the very best for your upcoming meeting with your team at Mayo Clinic. Their expertise will hopefully bring you closer to finding the right treatment approach for your unique situation. Please keep us updated! Your experiences not only matter to me personally but also provide valuable insights for others walking similar paths.
Have a lovely weekend!
Chris @santosha

@santosha I have temporal lobe epilepsy caused from a TBI. The left temporal lobe was damaged. I could not find a drug that stopped the seizures over about 8 years so I stopped all meds in 2012. I have started having Drop seizures over the last few years which are even worse. I ended up fracturing my spine at the end of 24 then had another few fractures from the next few falls but all is ok. It is very frightening not knowing what will happen after the next fall. I have about 2 a month, around the beginning of each month/or the end of the nxt. I can also sometimes have 1 in the middle of a month.

Thank you will have a look.

@santosha Yes I would like to know how the treatment through Mayo Clinic is going? Do they have any new ideas about what drugs to use for drug resistant seizures?

@dannoyes Hi Dan thank you for sharing your story. What is FND seizures? I just took a look at what they are! My seizures were caused by a traumatic brain injury after numerous blows to the head, not from Epilepsy. I ended up with damage to the left temporal lobe 20 years ago. The drugs made the seizures worse, I do not like the drugs & wish I knew more about seizures, TBI & epilepsy before I was started on these drugs. I have been trying the keto & Carnivore diets the last few years to see if they could stop them. Some people I have read about have stopped the seizures through the Carnivore diet. I have been trying to contact various people that it has helped but I am not getting any response as yet. There are so many people stopping meds for all sorts of illnesses with keto/carnivore diets. I will share this later on this site to see if anyone else has heard about it. I have started to research some of the newer drugs since I was taking them before 2012. The drugs took 2 seizures a year to around 24 up to 30 even 40 a year some years if I had a lot of stress. They have averaged out to about 22 - 24 a year the last 8 - 9 yrs.

@laura1961 - when you get a chance, do start a new discussion about keto and carnivore diets and seizures, as I'm sure other members would be interested.

If you go to the home page for the Epilepsy & Seizures support group https://connect.mayoclinic.org/group/epilepsy-2bb359/, then go below the blue box and the field called "Search discussions," you will see "+Start a new discussion," which is where you'd want to go to start this chat.

@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