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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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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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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

How Long Have U Had Ur Disorder
A MyEpilepsyTeam Member asked a question 💭

if anyone is free to chat i am here

A MyEpilepsyTeam Member

I’ve had epilepsy since the age of 2. I’m now close to 50 yrs. Of age

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 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

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

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

No need to apologize. I have done the same in the past too. Most of the friends on this site will not mind either.

About Flashback Problem
A MyEpilepsyTeam Member asked a question 💭

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

A MyEpilepsyTeam Member

Hum

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

Reaction!
A MyEpilepsyTeam Member asked a question 💭

If/ I may ask, should you not be comfortable answering by all means. How has everyone felt after their diagnoses? Was it hard to accept?

A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member Sorry to hear that you have had to endure all of that! I was blessed that back in 1980, the focus was on my heart (because my older brother had to have open heart surgeryread more