Ketogenic Diet / Brain malformations and Seizures

(Katie the Quiche Scoffing Stick Ninja ) #1

Anyone on a ketogenic diet who has experienced a seizure directly after ingesting a large amount of sugar and glucose? Regardless of being epileptic or someone who experiences seizures as a result from an arteriovenous malformation?

I just need general information.

(Ellenor Bjornsdottir (spare me thy resistant starch spiel)) #2

Not me, but now you have me curious. Did this happen to you?

(Katie the Quiche Scoffing Stick Ninja ) #3

Yes, I have a brain malformation (AVM).
I started Keto in April 2018, had my first seizure and was diagnosed in May 2019, shortly after I fell off the Keto wagon.
In June 2019 I had another seizure, again after carb/sugar binging.
I had gammaknife radiotherapy last November, to shrink the large vein in my brain, I shouldn’t of had any more seizures.
In January this year, shortly before Australia day, I had another seizure.
On Sunday, Mothers Day just passed, I had another seizure, after binging again.
My medication was increased each time, and after the gammaknife I should of not had any seizures, yet I’ve had 2 more.

The only link I can find is sugar/glucose. When I am on track, everything runs smoothly.

I am trying to find a link, or some research, to show my neurologist.
My care coordinator has asked me to stick to Keto religiously to see if I can prevent them by no sugar at all.

(Troy) #4

First of so sorry on what you are experiencing @ava_ad0re

I highly recommend maybe reaching out here For info?
They may have specific studies as well
They are known for their research on Keto and epilepsy

I’m not sure if this exactly what you are liking for
Hope it helps

I’ll keep looking Still
Be safe

(Peter) #5

Would a Continuous Glucose Monitor be an option for you? That might really help from a tracking POV. Otherwise, I agree with your care coordinator anyway, but it’s not always that easy.

(Ron) #6

Katie, this might not answer your question but it could explain why your not finding the information your looking for. Take care, girl!

(Katie the Quiche Scoffing Stick Ninja ) #7

Thank you everyone, i’ll take a read through what you posted, hopefully start to find more answers!


Could you be more specific? Wheat, rice, conventional pesticide ridden fruit, refined sugar, etc…?

What kind of medication are you taking?

(Katie the Quiche Scoffing Stick Ninja ) #9

Mostly wheat and refined sugar, I would say.
I’m on Keppra ( [Levetiracetam] 1500mg a day.
I figured out it wasn’t that, by the way.
I had brain swelling from my treatment which caused another seizure.