I have heard in the past from several friends who have tried many others including surgery, implants or non-medication alternative methods. However, I think it would help if those of you who have to share your experience with those are now at the point where they have been told that medication will never allow them to reach a long-term seizure free state.
If Q + A section was better organized, then I would not have to ask this question, but we have a support site, so we have to do what we can… read more
@A MyEpilepsyTeam Member Everyone gets nervous. Usually what helps is if you talk to your epileptologist/surgeon. From the surgeon, I learned there was a better chance of dying from a car accident… read more
I love listening to music and i have a few songs i listen to when it's a bad day. I'm looking for some newer ones if anyone has one.
Some songs that I like:
#1. Mary J. Blige- Just Fine
#2. Owl City- Fireflies
#3. DiL- Don't Let Go
#4. Joeboy- Alcohol 🍸
#5. Kes- Hello 👋
#6. Efya- Best In Me
#7. Halsey- Without Me
#8. Selebobo-… read more
i want to know as much as possiable about it they r talking about doin this on my daughter
No need to apologize. Tell your neurologist's about the depression side effect of that medication
As someone who was once labeled as not likely to ever reach a long-term seizure free state (and have… read more
When did you get it?
Got that degree in 2012.
I have been epileptic since I was about 7 years old and am now 27 years old and feel like this past year has been one of the worst when it comes to the amount of seizures I’ve had
At the beginning of 2019, my doctor and I decided to try a new medication called Lamotragine and slowly take me off the older medication carbamezapine as I wasn’t fully under control. While I was on the carbamezapine I would have about 1 seizure/year and it was durable and livrable. We decided to lean another… read more
I had a right lobectomy surgery back in 2012. It never stopped my seizures but it did reduce them by more than half! I was haveing about 20+ gran mal seizures a year and now im having like 5-8 a year… read more
Our son was diagnosed with CAE when he was 3 years old, he's now 11 years old & under his consultant was gradually weaned off his medication as he had been seizure free for two years
So since November 2021 he's not been medicated, however over the last two months (from April 2022) we've noticed he's been having what we think to be absent seizures which is having a massive effect on him at school & at home. It's causing his mood to change, he's very tired, he gets headaches & loses… read more
I've had absence seizures (Jeavons syndrome) my entire life. Most of it was med-free because we didn't feel the the side effects of the meds that were available in the 80s justified the pay-off. I… read more
I went out yesterday purposely and I'm happy again! I can't wait for this weekend! I'm going to finally do open mic again! Last time was 2020 and I blocked him. I spoke a little ruff to him first
My 13 year old son has had 7 seizures since his first seizure on March 2016. Had two that year. Then went 8mths seizure free with no meds. This year he has had 5. He seems to only have them in the morning between 8am and 11 am. Wondering if anyone else has seizures only in the am, a couple hours after waking up?
all of my daughters seizures have happened in the morning or a little bit after waking up. She takes her meds at 9 pm and 9 am. her first seizure was March 10, 2019 and she totaled her car. Her… read more
In general what jobs do people with uncontrolled epilepsy do?
I have a degree and worked as a Counselor till I had a massive heart attack.