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: TMorners | 12/2019 | 0 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 imagery when I’m watching the tv or looking at my...

Created By: pharysol | 12/2019 | 0 Comments

các triệu chứng của bệnh viêm thanh quản mạn tính đang làm tác động nghiêm trọng đến cuộc sống và sức khỏe của người mắc. cách điều trị viêm thanh quản kinh niên sẽ tùy thuộc vào nguồn gốc gây...

Created By: tiagorodrigues | 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 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 | 1 Comment

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 | 4 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...

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 | 1 Comment

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: h_choua@yahoo.com | 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 | 1 Comment

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 https://medium.com/@elizabeth.s.roldan

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...

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