Insular epilepsy surgery, experiences?

@emaputric
Good Morning Ema,
Welcome to our group at Connect!
I'm so happy to hear you're seizure-free now!🙏
There's another member in our group - @zeljmar - whose child also has FCD and underwent surgery. I hope she might be able to share her experience with you.
Are you currently taking any anti-seizure medications? If so, I'd love to hear which ones are working for you.
Chris

@santosha Hi! Amazing hopefully I get to chat with them that would be of so much help!
I am on my third kind of medicine, first one was Lamotrigine which worked perfectly for one year and after one year my seizures and irritabilities came back, after that I was put on Levetiracetam which was really effecting my emotional state and was making me aggressive, and currently I am on Brivaracetam, which removed my seizures', but the irritability and the feeling of the seizures coming is still present. I am also very sensitive to alcohol, caffeine and lack of sleep. I read that you discovered medical cannabis and avoidance of gluten as major help, that really amazed me and inspired me to start tracking my daily routines to find out what works for me!
I am also curious on kinds of seizures that you have experienced, because for example one of my seizures lasted for 30 minutes where I couldnt talk but I was aware and was able to walk, so I am also curious is epilepsy really the right diagnosis?
Ema

@emaputric
Hi Ema,
I hope @zeljmar will chime in soon to share some information with you! 🙏
I have temporal lobe epilepsy with a small mesial sclerosis on my left hippocampus – a type known to be highly refractory and for which surgery can be very risky. I've tried 6 different AEDs over the years. Some brought terrible side effects (like Lamictal) and I had to stop them, while others didn't control my seizures well. Today I'm on CBD oil together with a child's dosage of Keppra (levetiracetam). Keppra's emotional side effects are quite common and well-known. Thankfully, I didn't experience those, but I did have other side effects that became manageable after my doctor reduced my dosage.
Along with these medications, I work hard to manage my seizure triggers. Gluten is one of my triggers, so I've removed it from my diet. Poor sleep and insomnia are another trigger I manage through yoga, exercise, and homeopathic remedies. As I've mentioned in other posts, the Andrews-Reiter approach and its workbook "Taking Control of Your Seizures" have been extremely helpful in identifying and managing my triggers.
My seizures are mostly focal (both aware and impaired awareness), lasting a maximum of 1 minute. Focal aware seizures (auras) usually last from a few seconds to a few minutes. From what you're describing, it sounds like your seizures might be something different.
This year, I experienced my first PNES (psychogenic non-epileptic seizures) after a strong focal impaired seizure. What was different in these seizures that followed was that I stayed conscious through them, which doesn't happen with my focal seizures. My doctor explained – and I've learned through my reading – that people with epilepsy can have both epileptic and non-epileptic seizures. It's important to note that AEDs don't work for PNES, so someone having only PNES won't see improvement with anti-seizure medications.
I'm wondering if you might be experiencing PNES? There's a really helpful discussion in our group where you can see if the experiences other members describe sound similar to yours:
Have nonepileptic seizures/psychogenic nonepileptic seizures (PNES)?
https://connect.mayoclinic.org/discussion/non-epileptic-seizures-or-pnes/
I hope this information helps! Feel free to reach out if you have any other questions.
Chris