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Community Forum

We invite you to share your personal #DareTo Go the Distance story. Use this forum to talk about how you are managing your seizures, finding your best possible health care, and improving your quality of life.

Learn more about #DareTo Go the Distance

Topic: Share Your Story

Created By: Dizzyagain | 12/2019 | 1 Comment

I am 59 and recently had back to back Tonic-clonic seizures and a few focal aware seizures. I have never had a seizure before, at least not that I aware of. At the time I was taking 1000mg...

Created By: moreblessing | 12/2019 | 2 Comments

My 8 year old daughter was diagnosed with CAE in August this year after having a grand mal seizure at school. She had an EEG done which revealed the diagnosis. She was immediately put on Sodium...

Created By: rbarrett813 | 12/2019 | 2 Comments

Bio: Hi, I'm new to this forum so I thought I'd share my story. I was diagnosed with epilepsy 5 years ago, my freshman year of high school. I was having seizures pretty consistently. My...

Created By: | 12/2019 | 2 Comments

Hello, I'm new to this group, I just wanted to ask if anybody has experience what I'm going thru
So my baby started having seizures a few hours after he was born. He was born, and...

Created By: Mufat | 11/2019 | 0 Comments
Created By: Kkurtz129 | 11/2019 | 2 Comments

My daughter (6)was at school on Sept 19th and started getting confused and said she had the scardies. She not anyone in the family has history of seizures she went into 2 focal seizure that lasted...

Created By: burninginside | 11/2019 | 1 Comment

I was diagnosed with Tonic Clonic epilepsy at 10 and at 18 had my first status epilepticus episode, it lasted 4 days. I take 200mg's of lamictal-XR 2xDaily. Given my life so far and...

Created By: EpilepsyAwareness | 11/2019 | 4 Comments

Hi! I'm a middle schooler and I have dealt with Epilepsy for 4 years, I had been seizure-free for 3 years and I just recently had another one. it was hard, especially when I try out for...

Created By: viktor92 | 11/2019 | 2 Comments

Anyone's experience with Keto Diet and Epilepsy? I want to know if someone has experience to share with me please.

Created By: eroldan | 11/2019 | 1 Comment

I wrote an article about what it's like to live with epilepsy on

I’m a 36-year-old female who lives in New York City in a studio apartment. I...

Created By: Todd1968 | 11/2019 | 1 Comment

Hi all, I'm Todd and have TLE and CPS. I have had surgery for this and tried several meds all to no avail.

Created By: Babalush | 11/2019 | 6 Comments

Hi everyone, for the past three years, every 6 months or so my husband (45) would have an episode lasting a few hours where he would be completely disoriented, confused, no memory of the past 6...

Created By: VNS6011208 | 10/2019 | 1 Comment

Hi everyone,

My girlfriend and I both have epilepsy (she has dual, I have tonic-clonic) and we have considered undergoing surgery for the VNS.

If so, we may do so after the New Year...

Created By: Les_5db21fc57849a | 10/2019 | 1 Comment

I've noticed over the last few weeks that l am getting sudden drops while out walking. Well l used to get the odd one, but they seem to be happening a bit more often now. I am 59...

Created By: P¹inkdisney | 10/2019 | 4 Comments

Hey! My name is Ella, and I'm 15 years old. I started having seizures when I was 9 months old. They were only brief abscences, but I was never fully diagnosed, as my EEG was clear. When I was...

Created By: Mrkulit149 | 10/2019 | 2 Comments

I was diagnosed with epilepsy since the age of 8. I use to get petti mal which is a starring spell and grand mal which is like holding a live electric wire. Before that, I get auras since the age...

Created By: Rohbiwan | 10/2019 | 3 Comments

Tried to share my story, but "sorry invalid content" was all I could get from it.

I'll share those upsides when I figure out how to enter a valid content.

Created By: Dyjon | 10/2019 | 3 Comments

I am 28 this year. I have epilepsy since I am 23 years old. At the point of time, I am taking my Bachelor's degree. Before have epilepsy, I was able to drive since I am 19, attended and clear...

Created By: delphinium | 10/2019 | 2 Comments

I am moving. I don't know people around me. Paranoid Mom wants me to have alert for falls. They are ugly. I like pretty jewelry. Advice? Brand? Anything?

Created By: delphinium | 10/2019 | 0 Comments

I had a problem with my medic alert chain breaking. It got expensive and the things were ugly. I solved the problem with a tattoo and it has helped me so much. I never thought I would get a tattoo...

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