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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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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.

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

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

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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Anyone Feel Defeated When They Have To Adjust Meds And Can't Drive?
A MyEpilepsyTeam Member asked a question 💭
A MyEpilepsyTeam Member

No. I did lose the ability to drive b/c of complex partial seizures (new term used today after 2017 reclassification but you know what I mean) for about 3 yrs. But I'm driving again. So keep the… read more

Have You Ever Participated In A Clinical Trial?
A MyEpilepsyTeam Member asked a question 💭

I know that if I had a grand mal seizure when I was at Brigham and Women's Hospital for EEG Long Term Monitoring, then a separate recording device in the room (wireless) could have been used in the research for this potential replacement for all of the wires needing to be attached during EEG testing and especially EEG Long Term Monitoring. This was not the standard clinical trial because it is simply getting the patient in the EEG Long Term Monitoring to agree to have the wireless machine in… read more

A MyEpilepsyTeam Member

Forgive me @A MyEpilepsyTeam Member. I did not see that you had already asked this question. I was on a run, so to speak, and it just kinda popped in my head.

Photosensitive Epilepsy
A MyEpilepsyTeam Member asked a question 💭

Does anyone here have Photosensitive epilepsy?
If so how were you tested and treated.

A MyEpilepsyTeam Member

Very!!

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

Has Anyone Experienced A Significant Increase In Frequency And Severity Of Seizures With Perimenopause?
A MyEpilepsyTeam Member asked a question 💭

I am 100% positive that hormones are playing a huge factor in both the frequency and intensity of my seizures but I’m not sure where to start to address it. If anyone has any suggestions, PLEASE let me know!

A MyEpilepsyTeam Member

I started with seizures just as I was coming out of menopause at 54. I’m going to be 64 in June. All of my family and friends as well as myself think my epilepsy was brought on by a hormonal change. I… read more

Is This Video EEG?
A MyEpilepsyTeam Member asked a question 💭

About in 2nd grade I got to be stuck in a room with electrons stuck on my head for 3 days. And I had a camera filming me while I slept kinda got filmed everywhere. And there was this computer who was showing my brainwaves. I just wonder if that was a video EEG. Just a little thing I need to add. After getting out of the hospital I vomited, sorry hospital but the food was disgusting.

A MyEpilepsyTeam Member

I had a EEG for 3 days couldn't get glue off for a while. It was clear. I also had a brain scan which was clear and then a then a couple of days later I had 5 seizures. I'm always a difficult, drugs… read more