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When did you get it?
1950s
1960s
1970s
1980s
1990s
2000s
Diagnosed 1992 I think winter. Oh wait nope summer.
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
My neurologist wants to put me on EPIDIOLEX. Does anybody have any experience with this medication. I would love to hear your reviews and experiences. Good or bad.
@Churcham. I can tell you from professional experience (14 years doing interlibrary loan work for Massachusetts General Hospital--and getting at least article, chapter, book, etc. request filled for… read more
John
Where I live they have made wearing masks up to us. We are still 6 feet away from one another. The small activities only allow 10 people in a room, still. I am sure the isolation when we could… read more
I'm in the proces of applying for HCPC registration and I need to declare about having epilepsy and my relatively recent seizures - will this impact me getting my registration?
Occupational health have previously advised no lone-working, which would impact my work immensely! Anyone have similar experiences?
I didn't want others to know when I was diagnosed at 41
But I have had some unfortunate issues in which I didn't have any idea of what happened.... I guess I was on a vent and when I finally woke up… read more
As a child, I took Phenobarbital at night, and Tridione in the daytime. Anyone else heard of this? My new Dr.'s give me funny looks, but I know what I was taking. I was 17 when I stopped taking it.
I take 145 mg of phenobarbital.
116 at night
On it 29 years
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!
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
I am set to have the ECoG Intracranial EEG(the grid on the surface of the brain), I have had the Depth Electrodes once. With my limited research it sounds that the depth electrodes were significantly easier... Just curious if someone could shine some light on what that whole process looks like and what I have to look forward too.
Me 5 days
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 want to know as much as possiable about it they r talking about doin this on my daughter