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Real members of MyEpilepsyTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

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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

What Is Your Sleep Like?
A MyEpilepsyTeam Member asked a question 💭

I was reviewing my sleep log (started keeping one July 13, 2018). I haven’t been to bed before midnight. A couple of nights I went to bed at midnight but more often it is between 2am-5am. I don’t have a consistent sleep pattern. Some nights it’s 4 hours, some nights it’s 10 hours. Regardless of how many hours I sleep, I feel wiped out when I wake up.

What is your experience like?

A MyEpilepsyTeam Member

I'm flakey as far as my sleep schedule. It's regular, but off hours. Unless I'm involved in physical activity, by 9:00 pm I can't stay awake. If I go to sleep, I'm up by 4:00 am, wide awake. I keep… read more

Has Anyone Found Cranial Sacral Treatments Helpful In Soothing Your Brain And Body?
A MyEpilepsyTeam Member asked a question 💭
A MyEpilepsyTeam Member

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 You Were Told That Medication To Assist You, Did You Choose Surgery Or Alternative Solutions? How Well Did It Work For You?
A MyEpilepsyTeam Member asked a question 💭

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

@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

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In Addition To My Epilepsy, I Have A Learning Disability. I Do Not Know If They Are Related. I Know Seizures Have An Effect On Memory.
A MyEpilepsyTeam Member asked a question 💭

I know the tests said my memory was poor. When given directions, I did not carry out the task well or consistently. The inability to do so the Doctor felt would getting and keeping a job difficult.

A MyEpilepsyTeam Member

I have a very bad short term memory but a good long term memory

Epilepsy Diagnosis
A MyEpilepsyTeam Member asked a question 💭

When did you get it?

1950s

1960s

1970s

1980s

1990s

2000s

Last of 101 replies sign up to view previous answers
A MyEpilepsyTeam Member

Diagnosed 1992 I think winter. Oh wait nope summer.

Does Anyone Have Any Seizures That Present Similar To A Panick Attack? What About Before An Episode/after One?
A MyEpilepsyTeam Member asked a question 💭

It's happened quite a few times at bedtime most recently last night, i feel heavy and disconnected but also like my body is moving around, my eyes quickly moving around...

A MyEpilepsyTeam Member

After my right lobe craniotomy on 12-16-2020 being a constant burden on my family unable to help out, drive or work had a couple of trips via ambulance to the ER. Seen for: 8/2/2021
Pseudo seizures &… read more

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

What Are My Options?
A MyEpilepsyTeam Member asked a question 💭

I submitted a reasonable accommodation request on 10/18/22 asking that my job give me 12 hours off of work, specifically during the hours of 7pm to 7am, due to the fact that I must wake up at 6am to get my children ready for school. Also to see to it that I may get enough sleep, because the recommended amount of sleep for someone with my disability is 8-10 hours of continuous sleep per night. My boss agreed to accommodate my request for one week only: 10/31-11/05/22, even though I… read more

A MyEpilepsyTeam Member

Easier said than done. But you deserve better than them!!!!

Does Anyone Take Levetiracetam XR (Keppra XR) 2x A Day?
A MyEpilepsyTeam Member asked a question 💭

Tonight I am going to divide the 3000 mg of Levetiracetam Extended Release tablets and take half at bedtime and half in the morning. This is to stop the afternoon seizures.

Does anyone else take the extended release twice a day and if so how much do you take and does it work well that way for you?

FYI: My doctor has prescribed it this way.

A MyEpilepsyTeam Member

I already answered that. I have already taken Keppra, but had no idea Levericetam XR was Keppra!

Leslie