Epilepsy or seizure disorder? Why stroke?

Hi Chris,

I hadn't thought about gluten being a trigger, I've never had an issue with gluten, my daughter is gluten intolerant and that makes me wonder if gluten is a seizure trigger for me.

Tony

I've had instances where the words just don't come out writing would be impossible. It's frustrating thinking about it afterwards. I don't have the mental capacity during to think much about it, I can only focus on trying to speak.

Hi Tony (@tonyde),
I also did not have an issue with gluten, but as it is known gluten provokes inflammation in our gut and the gut is our second brain. This is why the Keto diet (very little carbohydrates) helps in epilepsy as well.
Give it a try, stay one month without gluten, and see for yourself. I tried that in November 2021 after reading the book Brave New Medicine by Cynthia Li MD. My seizures decreased from 12 to 4 in that month. It was then December and many parties were around and I went back to my daily diet. The seizures came back to 12 in that month (my usual number of seizures in a month at that time). And in January 2022 I went back to this gluten-free diet, sticking to it since then. My husband who does not have epilepsy also stopped eating gluten, deflating. He did not lose weight, but some trousers that were tight did fit him again.
Chris

Hi Leslie,
I easily understood everything you wrote, now reading your "it might not have made much sense" makes me wonder about my writing.
Tony

@tonyde
Thank you for your concern about seizures in public but it’s not necessary. It doesn’t matter where or when the seizures happen.
i’m not sensitive about where seizures happen or how many people wanna watch. They’re gonna happen when they’re gonna happen and if people don’t understand what’s happening that’s their problem not mine. The only thing that bothers me is when spectators say cruel things to me. Epilepsy, having a seizure or falling for any reason should not be associated with shame or embarrassment like someone mentioned in another post.
Jake

@tonyde
One thing I forgot to mention in my last post. Taking gluten out of my diet was much much easier than I thought. Nowadays we have many products gluten-free: pizza, bread, biscuits, cakes, pasta (Barilla has excellent gluten-free products) and many others.
Chris

I haven’t been in this site in a while because, honestly, I have been fighting increasing depression. Cannot seem to stop it. Caused by seizures or the lacosimide? Emotions are off the chart. Cry at everything, and just can’t get a grip on this. I hate the idea of taking another med but this is terrible. So Jake and Santosha, my dear friends, I need your sage advice. Help please!

I strongly suggest talking to your neurologist about changing your meds, do your own research and don't be afraid to quiz your doctor. Use a board-certified neurologist if possible; seizures are not a PCP issue.

I dealt with serious depression caused by my seizures and side effects of meds. It wasn't a "one drug solves all" situation for me, it took years before my doctor found the proper mix of Lamictal and Trileptal.

Stay positive by telling yourself this is only temporary, you will get better.

Thank you for your response. I’ve used this neurologist since 2013 and do like him but he isn’t a specialist. Not one here I don’t believe. I am going to talk to him next visit, and before I take anything else will check it out.

Good luck and stay positive, you'll get there.

Your doctor may do an EEG, one issue may be that an EEG doesn't always disclose epilepsy or other seizure disorders. Per Mayo Clinic website:

"EEG tests are used to show the presence or absence of specific brain activity in specific areas of the brain, with an accuracy within milliseconds1. However, EEG has relatively low sensitivity in epilepsy, ranging between 25–56%,"