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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 had more seizures in my 40's than any other time except my teens. The seizures I had in peri menapause were also more severe, causing a loss of memory and balance. It took weeks to get over each… read more
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...
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
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
I am 25 years old , is scared to have children because of my disgnose , I need a little support ,
I had two girls . One was 11 6 1/2 & the other was 10 lbs 6 Oz.
The oldest is pregnant with her first child and the youngest just finished 1 year of college. Yes I was on AEDs and the only issue… read more
Yay or Nay.
yay. let me know how it helps
Since I was diagnosed epileptic at 15 months old (December 1979), most of my seizures are nocturnal but I also have absence, tonic clonic & generalised focal ones, so I’ve been epileptic now for 43… 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
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 am considering asking my doctor about getting a VNS. I think my current medications have been working (ive been seizure free for 2 months), but I'm having really bad side effects with it. I don't want to change them because I don't want to have any more seizure right now. Anyway, I was thinking of asking my doctor about getting a VNS and I am wondering what testing they do before you get one? If any of you could share experience that would be nice. Thanks!
I mean I have it and it does not nothing for