curious, anyone off meds?

[Ondreianna]

So Ive been off meds for a couple of years (as i stated in intro, sorry for redundancy). I was wondering if there is anyone else on here that also is not currently taking meds? How is that going for ya? are you doing better or worse? how do you feel about that? what do you do to help control/manage/lessen the seizures? and if you dont mind what kind do you have.

sorry for all the questions, answer what ya want. Thank you for your responses. I hope all is well with you.

 

[Dutch mom]

Hi,

My son (allmost age 11) is off meds for 5 years now. Six years ago he started on the ketogenic diet. The diet has reduced his seizures significantly and his EEG improved 70% After six years he's still on the diet, not seizure free, but far more better as how he was on AEDs.

 

[Molly97]

I've been off meds since Nov 2007, and on the GARD since May 2008. Food ingredients were, for years, my biggest trigger, one of which I was totally unaware. These days, a full-blown seizures means a look at what I recently ate. Works for me.

That said, my current seizures appear to be TLE sensory hallucinations. These come and go with no apparent cause. Back to back ones give me a horrible headache that can last for days. I think these have always been around, but were simply eclipsed by the constant gut auras that I experienced 24/7. With the gut-related seizures mostly resolved, I am aware now of these sensory hallucinations.

 

[Ondreianna]

so with your siezurs do you ever get really jittery and get hard to focus and feel shakey? that is what mine are a lot. I was told that i had an abnormality with my temporal lobe and that they werent sure what it was or what the effect of it being there was either. i wonder sometimes if the stuff i described and the nerve pain are from the temporal lobe. i hallucinate sometimes with mine as well.

 

[RobinN]

My daughter Rebecca no longer takes medication.
We also work with nutrition to keep her seizures under control. She has tonic clonic seizures.