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Due to the popularity of social media, we have seen decreasing engagement on our forums and chat. Please know we want to keep talking to you about epilepsy, seizures, and what you need. We want to stay connected with you.

Community Forum

A place to share questions, concerns, and challenges that adults with epilepsy may face in understanding, managing and living with seizures.

Topic: Living With Epilepsy - Adults

Created By: L8117 | 04/2020 | 2 Comments

Has anyone noticed a connection between Dilantin levels and neuropathy reactions? I recently retired and am wondering if upping my Dilantin from 250mg daily to 275mg is the reason that...

Created By: PNWGuy | 04/2020 | 3 Comments

Hi all,

I'm new to the forum and appreciate the discussion, answers and help provided by you all. I've found with many things, forums can be the best source of info. My question...

Created By: Lea0311 | 03/2020 | 6 Comments

Hi all,

I have refractory temporal lobe epilepsy (left temporal lobe) with focal seizures. I have been on a number of meds, I'm currently on Topiramate but my seizures are drug-...

Created By: spencers | 03/2020 | 2 Comments

Hi i have a form of epilpesy to where i have severe seizure activity on both haves of my brain. I also have petite mal seizures and forget what im doing or where i am or who i am and black out...

Created By: mtranchina1995 | 03/2020 | 9 Comments

Hi guys!

I've been dating my boyfriend for almost two years now and he is epileptic; I'm here to find more info on how you all go about dealing with the side effects of your...

Created By: JDMerritt74 | 03/2020 | 2 Comments

It happened again. I was driving to Houston and somewhere between Woodville and the Indian Reservation, I opened my eyes to see the tree line covering the roof of the car and a bunch of friendly (...

Created By: ktetreault1 | 03/2020 | 9 Comments

Hey all,
I'm in a tough situation. I recently got out of a 5 year relationship with a girl who I thought was the one. The reason behind that is she understood my illness. She drove me...

Created By: Rbuzz | 03/2020 | 2 Comments

Trying to do some research on what I'm experiencing but not sure if I'm coming up with the right results online.

Recently at night I will experience one giant burst in my head....

Created By: Kayla3493 | 03/2020 | 2 Comments

I am an ER Tech, I have a dual role so I am also a secretary, I do everything but give shots. I am usually the only tech/secretary working on my shift, which means I get my butt kicked, I hear my...

Created By: daisyaraujo92@gmail.com | 03/2020 | 4 Comments

Hi everyone! I am new here. I was diagnosed with epilepsy at 16 years old I am 28 .Thankfully the medicines I am taking levetiracetam 1000mg and divalproex 500mg have control the seizures. I take...

Created By: burninginside | 03/2020 | 1 Comment

Apologize for the long read, I just need to put this out there. I'm taking lamotregene to "control" my seizures. The hardest part has always been the side effects of the medication...

Created By: emmar1 | 03/2020 | 4 Comments

Hi guys.
This is a very long story so brace yourselves...
13 years ago I suffered my first seizure, I had 3 more all during pregnancy and then I was very lucky and went 12 years...

Created By: Liam Lewis | 03/2020 | 4 Comments

Hi all,

I got diagnosed with epilepsy once I was 18 and tried different medications and dosages and didn’t really have any luck for a while but now I’m currently 25 and taking keppra and my...

Created By: hpenny3 | 03/2020 | 11 Comments

Hello, I just want to know what people have compared their experience of epilepsy with. Most people, especially those who don't know what it is, have no idea what to compare it to or how to...

Created By: Emilycrawley1272 | 03/2020 | 3 Comments

Hi all! I do not have epilepsy but my boyfriend (27) was recently diagnosed. April 2019 I came home and found him unconcious with puke on him in his car parked in the driveway. He had gotton home...

Created By: AlexH1997 | 03/2020 | 3 Comments

Hi everyone, I was dxed with epilepsy at 7 (petit mal). I stopped having seizures at 13 but at 14-16 I started getting myoclonics, and tingling in my face. I went for an EEG and it was negative...

Created By: Patriotrehab | 03/2020 | 2 Comments

I’m thinking about going on ADHD medication for the first time as part of my treatment plan, but some doctors are reluctant to try it with me because I have active multi focal epilepsy while on...

Created By: UnknownEntity | 03/2020 | 3 Comments

I'd like to just give a brief background:

2006: 17 years old, donated blood, immediately after, and for 3 weeks, I had seizures every other day.
The experience was usually the...

Created By: avl | 02/2020 | 1 Comment

Hello! I have a close friend, having been diagnosed with epilepsy. He undergoes its specific treatment for a long time, with positive results on reducing the seizures number. However, he still...

Created By: SheWhoMustNotBeNamed | 02/2020 | 2 Comments

My husband has a TBI and his seizures began when he was poisoned at age 18. He has an electronic device inside his body that electrocuted him every 60 seconds and is meant to help slow his...

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