Community Forum Archive

The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.

Topic: Share Your Story

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.

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Anyone experience fear as their aura?

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...
Long term Dilantin use 54 years

01/2020 | 1 Comments

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...
Vomiting during a seizure

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...
Getting used to VNS

01/2020 | 0 Comments

Hey everyone... I now am living with VNS Therapy and here is my story.. https://youtu.be/A1wu8fZy7ps Currently at about 7 videos and plan to upload to...
Being blessed

12/2019 | 1 Comments

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...
Excited to be here

12/2019 | 1 Comments

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
Nocturnal Seizures out of the blue

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...
Worse with Age

12/2019 | 1 Comments

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...
so close

12/2019 | 1 Comments

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...
Atonic seizure with gene SLC6A1 - 4 yo

12/2019 | 1 Comments

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...
Epilepsy and Daydreaming?

12/2019 | 1 Comments

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...
Plymicrogyria 5years old boy

12/2019 | 2 Comments

Hello, My son in law (5yo) as a type of polymicrogyria resulting in epilepsy, developmental delay, intellectual disability and somewhat motor...
Help with posting in the forum....

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...
Breakthrough Seizure?

12/2019 | 1 Comments

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...
Feeling Down After A Seizure

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...
Temporal Lobe Epilepsy

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...

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