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.

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Topic: Share Your Story

Created By: stokerfan | 12/2018 | 1 Comment

I was thinking about getting the Embrace 2 bracelet. Got a prescription from my Neurologist and it stated that I have localization related focal epilepsy. Not sure if the bracelet will work for...

Created By: mrlee123 | 12/2018 | 7 Comments

Hi there, I am a 31 yr healthy ( as far as I know) female and I think I might have had a seizure. I don't have any history of seizures so im kinda asking for insight. A little back story of...

Created By: Sweetblue298 | 12/2018 | 1 Comment

Four days ago while at work I had a seizure. Ended up in the ER. Blood work and CT scan came back normal. This was my first seizure ever. A littld over a month ago I went to prompt care and the Dr...

Created By: Ayda | 12/2018 | 1 Comment

I'm quite new with epilepsy.. i have myclonic seizures so i started taking phenobarbital 8 months ago and i have been seizure free for 4 months now.recently i found that phenobarbital is no...

Created By: Big Chungus | 12/2018 | 3 Comments

This has been happening off and on for the last two years, often multiple times per day. It usually happens upon standing up but will sometimes occur while running or very rarely when lying down...

Created By: Shae97 | 12/2018 | 4 Comments

I was diagnosed with generalized epilepsy. I've been seizure free about a year and a half now, but i'll get these strange feelings every once in a while that are hard for me to describe...

Created By: rhyblank | 12/2018 | 3 Comments

About 7 months ago started having what I think are small seizures. Certain sounds like a chip bag or someone eating would start to trigger a sound in my head that I have heard before and I will...

Created By: stokerfan | 12/2018 | 2 Comments

Has anyone had non-epileptic seizures? If so what were the signs? I couldn't find any information on them.

Created By: jaw53545 | 12/2018 | 1 Comment

Hi. my name is Jason Womble, 45 living in Wisconsin. I apologize upfront for all the information, but I figured an idea of where things started to now would be helpful.

Back in late April...

Created By: stokerfan | 12/2018 | 2 Comments

Does this sound like I have a seizure? I stopped with my hand a door frame. Unresponsive to simple questions. Hand slightly. Staring off. Tight grip on objects in hand. Needed support to...

Created By: irwin2ka | 12/2018 | 2 Comments

Hi everyone! I finally have become more comfortable and also curious if there are others out there who have possible had a similar experience as mine...

In January of 2014 I was diagnosed...

Created By: rleon | 12/2018 | 0 Comments

Goodnight, I'm from the Dominican Republic, I do not speak English, I'm using a translator to express and tell my story.
I have a 7-year-old girl, who was diagnosed with epilepsy...

Created By: scrislip1 | 12/2018 | 1 Comment

I wrote my first book and it is titled “Weird Girl With a Tumor” - available on Amazon. It entails struggles and challenges I went through while living with epilepsy. I hope it inspires others...

Created By: blgibbs@hotmail.com | 12/2018 | 0 Comments

Sad to say this but is true that I was born with a seizure disorder because the doctor or CT scan found a scar inside my skull that is not able to be removed from the tissue part from the brain...

Created By: SallySue | 12/2018 | 7 Comments

Hello,
I would like input into your experiences of how likely it is to find activity of simple partial ( or focal) seizures on EEG? As I get mixed reviews on this. For instance would video...

Created By: Pinkie062790 | 12/2018 | 1 Comment

My first seizure happen when I was eight years old. My mom told had grand mal in her bed but didn't waking up a little until was in ambulance. I was full awake once I realized I was in...

Created By: nicolejking15@gmail.com | 12/2018 | 0 Comments

https://www.gofundme.com/epileptic-needs-help-with-tuition&rcid=r01-15438290574-a2b65c8939fe4ace&pc=ot_co_campmgmt_w

Hello. I am trying to figure out how I will be able to...

Created By: Livestrong_5aa285b245f85 | 12/2018 | 0 Comments

Dear All,
Wish you the best of the day. My question is a simple one. I have been seizure free for the past 10 years but i sometimes go through auras but they are taken care of in due time,...

Created By: Spanky25 | 12/2018 | 1 Comment

I’ve been on Dilantin since I was a teenager. I am now 48 & seizure free since on the meds.
The past few months I smell this gas toxic smell. However, my wife & family says...

Created By: Momto2 | 11/2018 | 2 Comments

My healthy teenage son was on a delayed vaccination schedule because of my concerns with vaccines in the first place. As he got ready for middle school I felt pressured to finish his vaccines and...

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