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What Treatment For Epilepsy? I've Been On 6 Different Meds.
A MyEpilepsyTeam Member asked a question 💭

Every couple of years I have seizures then my Dr wants to try something new or ups the dosage. The meds I'm on now are making me dizzy and off balance

A MyEpilepsyTeam Member

I have been on too many meds to count. I was on phenobarbital, volume, Dilantin, Depakote, Topamax, and vimpat just to name a few. My son is on Trileptal, Keppra, Onfi, Depakote (two, 250 mg, and… read more

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When You Are Taking The Medication
A MyEpilepsyTeam Member asked a question 💭

When you are asked to take medication in the Morning and Night when Label on the box, would you follow it to 12 Hours between taking it, or what would you think of Various time in the Morning and A Various time at Night? If you didn't have a set 12 Hour Period would you think people would have more Seizures, Because I use to work early at 6am up to Last February, but would take my Medication at 9pm for Night , so this would be over a 12 Hour Period.

A MyEpilepsyTeam Member

Lamictal, Frisium and Epilim Chrono

Does Anyone Use The Watches That Help Detect Seizures? Are There Certain Things You Need To Take It Off To Do So It Doesn't Set Off.
A MyEpilepsyTeam Member asked a question 💭

Will it set off with excessive motion.

A MyEpilepsyTeam Member

I have heard of this but I am afraid to shell out the money only ro have it not work. I'm waiting for it to be out a little longer so I can hear how well it works. If it works well, I would be more… read more

What Songs Do You Listen To, To Cheer You Up?
A MyEpilepsyTeam Member asked a question 💭

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.

A MyEpilepsyTeam Member

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

Epidiolex
A MyEpilepsyTeam Member asked a question 💭

Has anyone on here been using this?
I've found some research on it but I'd like to know peoples personal experiences?

A MyEpilepsyTeam Member

never heard of it is it a new medication ?

Anyone Ever Have Epilepsy Brain Surgery? Can You Share Your Experience?
A MyEpilepsyTeam Member asked a question 💭

Theyve been trying to get me to get epilepsy brain surgery for years the older I get the more I'm considering it as I'm seeing how it's affecting my life as an adult. I just want to hear other people who have already done it experiences so I know what I'm getting into. Did it completely cure you? Did your seizures get worse? Any mental changes in personality or mood? How painful was it? Etc.

A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member mine was so long ago I forgot about the puffy eyes. I had that as well. You have the same triggers as me

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Has Anyone Ever "unlocked" Stress Seziures?
A MyEpilepsyTeam Member asked a question 💭

Ive had epilepsy since i was born on my 18th birthday my brother stressed me out so much the doctor said i "unlocked" my stress seziures. They are nonelectrical so they couldn't pick anything up on sleep study.

A MyEpilepsyTeam Member

Steve, right now you are in the midst of intense spiritual warfare. What adds to the problem is the negative side effects of the medications that you are taking, and MD's not believing what you try… read more

Has Anyone Heard Of Pseudo Seizures?
A MyEpilepsyTeam Member asked a question 💭

I was told I have Grand Mal and other Seizure Disorders one of them called Pseudoseizures . Anyone else ever hear of this? I'm told it's hard to diagnose and often gone undiagnosed or is missed. My family and I was just grasping the Grand Mal Seizures now there's more to try and sort thru?

A MyEpilepsyTeam Member

I agree especially with MarKC - thanks for reminding me of ' non epileptic seizures' I've also heard of them being called ' pseudoseizures' too

Vns Therapy
A MyEpilepsyTeam Member asked a question 💭

i want to know as much as possiable about it they r talking about doin this on my daughter

A MyEpilepsyTeam Member

I have a VNS also, I am not very organized so I don’t know where my 🧲 magnets have gone. The battery 🪫 in my VNS is dead 💀 right now. My neurologist recently told me there is a new and improved one… read more

Medicine Reminder?
A MyEpilepsyTeam Member asked a question 💭

I take Levetiracetam and tomapax in the morning and at 6pm. I have my alarm is set for both times but sometimes I don't here the one in the morning or I take it and I'll forget that I did rather it's in the morning or afternoon. What I am asking is how do you keep track or what are you using to make sure you didn't forget?

Last of 313 replies sign up to view previous answers
A MyEpilepsyTeam Member

I now have a Nurse who is supposed to come in and set them up. I was running low on some that needed new Prescription Refills. Now I have everything I need. Am very capable of setting up meds. I have… read more