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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

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: Ananke | 01/2020 | 4 Comments

I have been diagnosed with epilepsy for 12 years, but I am experiencing something that could be a focal seizure or aura, however it deviates from the pattern of my normal seizures and auras....

Created By: Kslaybaugh | 01/2020 | 1 Comment

I was diagnosed with epilepsy in 1965 at the age of 18 just after high school graduation September. I had 2 seizures 1 week apart. The doctor put me on 3 100 mg Dilantin all at bedtime. I had no...

Created By: Veebeegee | 01/2020 | 3 Comments

Does anyone else vomit during a seizure?

My episodes always follow the same pattern. I wake in the night, feel like I need the toilet and then I get warning, sweating, the fear, the noise...

Created By: CamsCam | 01/2020 | 0 Comments

Hey everyone... I now am living with VNS Therapy and here is my story..

Currently at about 7 videos and plan to upload to keep people informed... Also...

Created By: oli5 | 12/2019 | 5 Comments

Hi Fellow Warriors,

Does anyone else here suffer from derealization for days after a seizure? I have temporal lobe epilepsy with simple partial seizures. During seizures I get extreme deja...

Created By: bgarland40 | 12/2019 | 1 Comment

Hi everyone, I am 40 years old and has had epilepsy since I was 2 years old, I thank God I am still here. I just lost my driver, which was my man. So now its about starting all over with...

Created By: Kevin L | 12/2019 | 1 Comment

Hi everyone I am excited to be here to learn and share. I’ve been the epilepsy space for many years. God bless everyone. Kevin

Created By: HexVenus | 12/2019 | 3 Comments

Hi everyone,
My name is Sarah, I'm 38 and I live in Tasmania. Back in April/May I woke my husband with a seizure (fell out of bed, wet myself, then climbed back into bed). He called an...

Created By: Kstepek | 12/2019 | 1 Comment

My husband was diagnosed with epilepsy when he was 6. He had very infrequent seizures (maybe 1-2 a year) medication controlled them completely and his doctors were confident he would put grow...

Created By: briseisreategui | 12/2019 | 1 Comment

last year on the 3rd of March i was 11 days shy of 2 years seizure free and while playing basketball with my dad and step brother i had another seizure. i was so close!

Created By: medespoirch | 12/2019 | 3 Comments

Can an epileptic use plastic surgery procedures ? i'm epeleptic and want to visit a plastic surgeron.

Created By: kristina2020 | 12/2019 | 1 Comment

I have been in a fire in 2018 that caused inhalation of pretty toxic stuff. I fainted, sustained TBI and been sick/off work since then. Had pretty weird symptoms but nobody really...

Created By: ChristopherNathan | 12/2019 | 1 Comment

I play ultimate frisbee. I am in the top 100 U20 players in the USA. I was invited to try out for USA’s U20 team that travels/plays internationally over the summer (try out was in November and I...

Created By: EvaTan | 12/2019 | 1 Comment

Hi, my son diagnosed with atoniz seizure haven't put to any medication yet.He suffer drop attack whenever he is having fever or tiredness. It can happen very frequent like more than 30 times...

Created By: TMorners | 12/2019 | 1 Comment

I had a seizure 9 days ago and I can’t seem to daydream anymore, like I know what I want to visualize but I just can’t see it or I’ll get faint imagery when I’m watching the tv or looking at my...

Created By: tiagorodrigues | 12/2019 | 2 Comments


My son in law (5yo) as a type of polymicrogyria resulting in epilepsy, developmental delay, intellectual disability and somewhat motor dysfunction.

He is being followed by...

Created By: TeresaFi | 12/2019 | 2 Comments

I tried several times to post in the forum trying to share my story, ask others for info about Epilepsy, and get some much needed support but I received an error message saying Invalid content...

Created By: TMorners | 12/2019 | 1 Comment

I was seizure free for 13 month until three days ago, I’m wondering if it was a breakthrough seizure? The night before I had a terrible nights sleep and was violently sick. Because my epilepsy is...

Created By: TMorners | 12/2019 | 3 Comments

I have had epilepsy for 13 years. I’d say it’s somewhat controlled, I’m taking tegretol 400mg in the morning 400mg at night, the longest I’ve went without a seizure is 13 days shy of three years (...

Created By: Sommerisbell | 12/2019 | 6 Comments

I honestly just want somebody to talk to about my TLE so I don’t feel so alone. I just want to talk to someone who understands what I’m going through. I read and read about people who suffer Grand...

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