I got the majority of the "important" questions answered that i asked my docs. I just forgot to ask, how long it takes for the chunk of skull to heal that they cut? Do they use screws to hold it together? Can you feel the fact your skull has been cut or that there are screws(if there is screws)? If anyone has has a resection, do you know a rough estimate what the answers would be? I know i can always ask the day of surgery for more exact answers, i just kinda want to go into knowing ahead of… read more

I'm on a mass amount of medicine. I take my pills. I also take epidiolex which is basically concentrated CBD. I have a VNS which I've had since June 2017. I tell my doctor about every seizure and sometimes medicine gets upped but I have so many different types *grand-mal, abnormal absence, atonic. I'm just looking for something else, because I'm having them more frequently. I hate missing work. I need to provide for my family. Any ideas are appreciated.

I’ve been diagnosed w/ ‘focal cortical dysplasia’ of my left temporal+parietal lobes & ‘focal cortical dysfunction’ of my right+temporal parietal lobes. This = intractable complex partial focal aware & unaware seizures alternating between hemispheres or/& activating both sides simultaneously
I’ve tried researching the difference between cortical dysplasia & cortical dysfunction myself, but I find the terms often used interchangeably
I have difficulty w/ higher executive functioning, so would… read more

Has anyone here had that done? If so was it effective?

I've been taking Keppra for almost 8 years now and off and on I've experienced unsightly fluid retention in the legs and stomach. I've never thought to associate the two previously but in the warmer months it gets pretty bad.

I was just wondering if anyone else has experienced something similar while taking Keppra or perhaps I just have a predisposition to fluid retention....

If you have experienced it how have you managed it?

I had brain surgery in November to remove cortical dysplasia in my right frontal lobe. It was an awake craniotomy. Luckily I am now seizure free 4 months, before had seizures every night. If anyone has any questions or advice I’d love to be a resource for you!

I haven’t seen my neurologist since getting this diagnosis added to my ever increasing list of epilepsy complications. Showed up after my recent inpatient video EEG (6 of them) 4 in ICU. I’m 51. Am I now having dementia??!?!

i dont know if im explaining this right, but now that my head is feeling a little less numb from surgery, i feel like i can feel the plate and/or screws in my bone. (Without using my fingers) like it feels "cold" and hurts bad in one tiny area even after taking Tylenol. It feels the way metal tastes, I guess. or whatever the injection hospitals give you when they say " you might taste a metallic tasted in the back of your mouth"..... it feels the way that tastes lol and cold. has anyone… read more

I’m looking for a seizure app that works with the Apple Watch to help monitor my son’s seizures and alert me when he is having one or if there is a camera that is affordable that can monitor his seizures at night and alert me when he is having one. Any suggestions?