Hi Casey! I am so happy you have found Dr. Doherty! He is so kind and has helped me so much over the last four years I've seen him. He suggested Onfi for me to try, but I couldn't afford it because it's not covered by my insurance. But we'd already planned to do the RNS anyway so we are seeing how that works. I had it implanted 5 months ago and it seems to be helping. It takes a while to get to it's optimum level of working/ getting to know your brain patterns. Anyway, in terms of side effects I think anxiety, suicidal thoughts and depression are high on the list for many seizure meds, I know they are for Keppra and I have had mild issues, but not as bad as it sounds for you. If you can't tolerate the Onfi then I would back off. But, see what Doherty thinks.
If you have any questions about the RNS surgery feel free to ask me. I'm very hopeful it will knock the seizures all the way out, but already there is improvement. Hope this helps. I also write novels, lol ;)

Never taken them but i do take librium 10mg x 4 pee day and although mixed with my epilepsy drugs dont feel like jumping out of Windows or in front of cars anymore. The only peoblem with it is a just kinda feel numb. And find ot hard to work and socialise properly. Slightly paranoid but unlike a lot of ppl on here my meds have completly stopped my seizures non in 5 weeks😏 so it's back to the old or feel like this.

Onfi is horrible my daughter took it for a while and her moods were horrible she just cried all the time and was so angry. We took her off put her on vimpat and it was much better

Hi Casey!
I have never taken Lyrica, I do take Trileptal, and it helped a lot when I started taking it ten years ago. I don't think I have any serious side effects to report for Trileptal, so I hope that helps for you. It stopped working all the way a few years ago and then I had to take Keppra as well, which eventually didn't work entirely either. My body is stubborn I guess to medication. I think the RNS will work for me though. I haven't had any seizures in the last month and a half! The VNS works well for a lot of people and Swedish is a great place to get treatment. I really hope you can find a treatment that works! Good luck hun!

Marissa

Marissa thank you so much!!! I just got back from seeing Dr Doherty again! Unfortunately, we couldn't locate exactly where my seizures are coming from! I had 3 the day before I got there and 0 the entire time I was there! (5days) but I did have abnormal discharges dominantly from the right temporal lobe. So he recommended the VNS implant instead for now. Until we can locate where for the sensors on the RNS implant. And yes I stopped the Onfi, I could not handle them mentally, and they didn't help with my seizures. I've been taking Lyrica and Zonisamide. He raised the dose of the Zonisamide and wants to replace the Lyrica with Oxcarbazepine or Trileptal. Have you taken those or heard of them? Thank you so very much sweetheart, you have helped me so much you have no idea!!! Hope you have had a wonderful seizure free day!!!

Casey 🐙