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I have Ectodermal dysplasia 16 and heard that in Ectodermal dysplasia 16 seizures may come from the Cerebellum part of the brain.
@A MyEpilepsyTeam Member I ask question here to be more educated in the neurologists office since I have been misdiagnosed and taken advantage of by certain neuros. I know this site is not medical… read more
My son wants to stop taking his anti-seizure medications that he's been on since he was 13 years old he is now 22 he is an adult so I'm looking for an alternative to this option
Please advise him to becareful. I know what he is going through but AEDs like most drugs that have been taken for a long time can bring ramifications if you don’t stop them gradually.
I am still looking at my sons VNS device to see if it actually works only had it inserted in Dec 2023
Im going on a trip soon thats a 17 hr time difference ahead of where i normally live. Ive gone through 2 hr time differences at most. Has anybody gone on far distanced trips? How did that go with the seizures? Was it harder goinng to your travel destinatiom or bacck home after? Any advice to hopefully help make if slightly easier with managing the seizures?
I have travelled to Europe from NY, that’s a 6 hour difference; 17 hours is a whole other story.
The advice I would give is to adjust your meds according to your usual time intervals, and not just… read more
Has anyone been in a situation where they have been having problems with their employer already in relation to your epilepsy, and now pregnant and also having that used against you too?
i can give you adviceand my experience of discrimination (you have been too) and went through thee longest most unnecessarily drawn out employment tribunal claim a my employer was trying to get me to… read more
Hi everyone would really appreciate any advice on my situation,
My mother had a brain tumor removal 7 years ago and one year after that she had her first seizure. She’s had them on off after that for a while, but they stopped for about the past two years (knock on wood)
Her seizures would be triggered by fatigue or lack of food/glucose.
Has anyone had this similar experience and had a colonoscopy done?
I’m pretty worried about the prep before the procedure because as you know you have to… read more
Hi Arj, as I separately posted, recently lived through similar. Whilst taking the solution to clear colon, resistance that medications provide to a seizure is significantly reduced. This is because… read more
Past life -H.S. graduation, some college no degree or certificate. Worked min.wage 34-35 yrs. Never been able to try anything higher in the work force w/o been stereotyped a liability ex.-military,police dept., factory/production jobs. No job in 5yrs. due to 1seizure on a 12hr. shift job and currently on SSI due to that. Trying to work now,the work force would rather have young meat. Don't know what to do in this situation, SSI is living below poverty for me. Don't know of any hobbies or trades… read more
I am getting off a medication that cost cost over $ 1000.00 per month called Aptiom
I recommend reading all the articles available here!
I recommend to be optimistic. It's easy to be depressed because it's so different. It's not a cold anyone can't catch it
Drink water stay hydrated
My doc told me to keep a journal but I am not… read more
Try and keep positive to reduce stress , to not trigger any seizures. Keep in mind that you control your life , Not Epilepsy. Epilepsy just throw obstacles in our path. They may not always be easy, we… read more
