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Real members of MyEpilepsyTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

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What Treatment For Epilepsy? I've Been On 6 Different Meds.
A MyEpilepsyTeam Member asked a question 💭

Every couple of years I have seizures then my Dr wants to try something new or ups the dosage. The meds I'm on now are making me dizzy and off balance

A MyEpilepsyTeam Member

I have been on too many meds to count. I was on phenobarbital, volume, Dilantin, Depakote, Topamax, and vimpat just to name a few. My son is on Trileptal, Keppra, Onfi, Depakote (two, 250 mg, and… read more

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Has Anyone Heard Of Paroxysmal Dystonia?
A MyEpilepsyTeam Member asked a question 💭

I am having uncontrollable contortions of neck and shoulders. EEG ruled out seizures..They are happening every 15 minutes. I can talk during them and coordination.

A MyEpilepsyTeam Member

I have struggled with this since 2012. My neurologist had heard of some new research at a conference. They took a blood panel testing for VGKC antibodies. Mine were high. I was diagnosed with… read more

Does Anyone Use The Watches That Help Detect Seizures? Are There Certain Things You Need To Take It Off To Do So It Doesn't Set Off.
A MyEpilepsyTeam Member asked a question 💭

Will it set off with excessive motion.

A MyEpilepsyTeam Member

I have heard of this but I am afraid to shell out the money only ro have it not work. I'm waiting for it to be out a little longer so I can hear how well it works. If it works well, I would be more… read more

Has Anyone Heard Of Pseudo Seizures?
A MyEpilepsyTeam Member asked a question 💭

I was told I have Grand Mal and other Seizure Disorders one of them called Pseudoseizures . Anyone else ever hear of this? I'm told it's hard to diagnose and often gone undiagnosed or is missed. My family and I was just grasping the Grand Mal Seizures now there's more to try and sort thru?

A MyEpilepsyTeam Member

I agree especially with MarKC - thanks for reminding me of ' non epileptic seizures' I've also heard of them being called ' pseudoseizures' too

How Do I Remember Things From Class?
A MyEpilepsyTeam Member asked a question 💭

So I'm going back to college. I start on August 11th. Here's my deal though. I've been in and out of college since I graduated in 2009 because of Epilepsy problems. I've gone to college three other times already. Also for three different things. Should have stayed with the same track I know but I'm indecisive and I get bored easily. First time I was at the community college, I was there for my AA but I had just found out that I had Epilepsy. My GPA started dropping near the end of a year and a… read more

A MyEpilepsyTeam Member

read it write it sign it and Record it there are exceptions for our disability take an ASL class once you learn to sign you will surprise yourself how much you remember you muight find a new calling

Side Effects On Certain Food With Your Medicines
A MyEpilepsyTeam Member asked a question 💭

Has anyone had side effects with certain foods, with your medications. Cause ever since I started taken lamitical I cant eat any of the spanish beans I used eat. Which is weird. It used to be fine when I ate spanish beans with rice but ever since I started taken lamitical for my seizures is that a side effect or no?

A MyEpilepsyTeam Member

I'm on that but I'm just getting immune to every medicine 😢 I wouldn't take Felbamate

Epilepsy Surgery
A MyEpilepsyTeam Member asked a question 💭

Hi everyone. I am Robbie, going to be 57 on August 1 and have had seizures since 11 years old. I take Carbatrol, Keppra and Lamictal for my seizures and also have had VNS since the early 90's. I have never been able to get my seizures fully controlled. The last couple of years they are getting steadily worse...have tried 3 new meds over the course of last year..had reactions to all if them and couldn't take. I'm thinking seriously about having the surgery done to remove scar from my brain they… read more

A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member then you tryed every alternative route there is. the only option is the surgery. my surgery is the worst of the worst... i had 1 side of the brain disconnected and removed. i… read more

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Has Anyone Lost Years Of Their Memory After Having Epilepsy Surgery?
A MyEpilepsyTeam Member asked a question 💭

I had the surgery when I was 42. Most of the memories, I was left with, are from when I was a kid.

A MyEpilepsyTeam Member

I havent quite noticed too much loss of memory yet. Only minimal short term memory loss. Like trying to remember words, or something i dod like yesterday. But other than that i still have a pretty… read more

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How Long Have U Had Ur Disorder
A MyEpilepsyTeam Member asked a question 💭

if anyone is free to chat i am here

A MyEpilepsyTeam Member

I’ve had epilepsy since the age of 2. I’m now close to 50 yrs. Of age

Sleep
A MyEpilepsyTeam Member asked a question 💭

My son have trouble sleeping. Is this normal in epileptics?

A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member , I’m definitely not on the. I’m on 5 other prescriptions brands . 1 or more of those probably have the side effect of my insomnia.

Hopefully, when my DBS power box is on and… read more