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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: theworleygirlie | 01/2018 | 3 Comments

I had my first grand mal seizure on December 16. My husband woke up to me having it and called an ambulance. All scans and mri came back clear. Eeg scheduled for Friday. I have no family history...

Created By: Beccamae12 | 01/2018 | 0 Comments

I have had a VNS for over 5yrs. For the past month I have had to keep the magnet taped over it because it continuously goes off I cough until I get sick. I was wondering if anyone else has had...

Created By: eovals | 01/2018 | 0 Comments

Or am I crazy?
I had total control and was seizure free for nearly 20 years. I had been on Dilatin for about half the time, but switched to Tegretol because of the gen 1 side effects (...

Created By: Shelbsthomcat | 01/2018 | 1 Comment

Hi!

I've been living with epilepsy since 2004 when I had my first seizure and discovered I had an AVM. I have written a two-part series about everything I've been through since...

Created By: Mrs. Brownstone | 01/2018 | 3 Comments

Hey. So im 18 years old and i just got diagnosed with myoclonic epilepsy. I had my first seizure just a week ago and now im on keppra. My doctor told me that i wont be able to consume alcohol. He...

Created By: Babygrl1967 | 01/2018 | 1 Comment

Hello everyone my name is cindy I am a 50 yr old woman just found out in Dec 2017 that I have epileptongenic focus seizures my career may be over my neurologist has me on KEPPRA 500 MG tablets...

Created By: Josh.Coil | 01/2018 | 0 Comments

Hey, everyone,
I’ve had epilepsy since 2010 and decided to share my story. Hopefully it’ll help someone.
https://joshn1234.wordpress.com/2018/01/04/why-i-missed-a-semester-of-college...

Created By: epihelp | 01/2018 | 2 Comments

Have you gone shopping lately or browsed the internet? Have you noticed all the devices that are available? We can measure just about anything now using some type of device. Many health problems...

Created By: Lady_Ghost | 01/2018 | 0 Comments

I first started having seizures after I was electrocuted in '11. I was at my sister's baby shower and got electrocuted due to exposed wiring. I lost my ability to walk and speak for...

Created By: bandit | 01/2018 | 2 Comments
Created By: mosiacgranny | 01/2018 | 1 Comment

I am 76yrs and had a stroke 18 months ago, and a few months after that I had my first seizure. Then every few months I would have another one, they got progressively worse. The last one I had,...

Created By: sagar78 | 01/2018 | 3 Comments

Hi all I'm 39 yr old male. My first seizure occurred when I was 10. It was a hot day. Came home had a seizure. Went to the hospital they figured it was from the heat. It happened 3 more times...

Created By: GianpaulC | 01/2018 | 4 Comments

Hi All, My 4 year old daughter just had a seizure while we are in Dominican, shes been out in the sun all day and didn't nap, also didn't have a good night sleep the night before. She...

Created By: Luis Cabrera | 12/2017 | 2 Comments

Buenas tardes yo sufro de epilepsia me la diagnosticaron en el 2014 soy de Honduras y por la falta de oportunidades y la poca ayuda a la enfermedad se me dificulta visitar al neurólogo. Es un...

Created By: Kitten_5a4327f4269fa | 12/2017 | 2 Comments

When I was two years old I had my first seizure at school I am 13 now I went to the hospital and my eeg was normal then a day later I had another seizure that is when I got digosed with epilepsy I...

Created By: Jbsid568 | 12/2017 | 1 Comment

Hi, I am 29 and a half years old boy. I had my first Tonic-Clonic seizure in 2004, when I was 16, on a lovely evening around 5 pm out of my native city. Aura, body parts twisting, faintness,...

Created By: KimB713 | 12/2017 | 1 Comment

Over the past 7 years, I’ve been battling, both, Epilepsy and Autoimmune Limbic Encephalitis. I’m very grateful to have received comprehensive care, including 2 brain surgeries, from an amazing...

Created By: swestuw | 12/2017 | 3 Comments

So I just joined this group, and I don’t normally do this, but I can’t sleep, so I’m going to vent a little. “About what?” you’re surely asking! Excellent question, I’m glad you asked. Here it...

Created By: kara409 | 12/2017 | 1 Comment

They haven't found anything through any test, last time i was seen was 2016, they came to the conclusion of syncope.

Note: I am able to feel when I am going to pass out. Everytime. I...

Created By: AshlynCrossan | 12/2017 | 2 Comments

I've been on ny meds for epilepsy. Keppra. It's december and I started it in August. I've been very sleepy even though I have been getting lots of sleep. I tried taking Vitamin b6...

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