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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
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
Does anyone know if 200mg 2x day is a high dose? I mean I could ask my neurologist. Just curious.
I take 1 200 in morning 2 at night and mind are brand name and never had problem but came sz free goning on 25 yrs as also take Tegretol 400mg 1 in morning 1 at night same time brand name
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
My wife is living with epilepsy and I am so scared to death of losing her. I would like to know if there is anything we could do, or is it something that's inevitable?
I would say when for some reason the seizures can not be controlled, no matter what they do
It doesn't matter how much I try paying attention to the conversation. I couldn't tell you everything word for word even if it's just happened. It's like it goes in one ear and out the other. Like following instructions if I've been given 3/4 things to do if I've not written down I would be able to remember 3 & 4 but not 1 & 2
@A MyEpilepsyTeam Member I am sorry to hear that your family reacts that way. However, you have friends on here, and we can reassure you that you are normal. Epilepsy/Seizure Disorder doesn't make… read more
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 husband suddenly started having grand mal seizures about 6 years ago completely out of the blue and was diagnosed with epilepsy about 6 months after his first cluster of seizures. He was young (27) fit and healthy and strong as he is a farmer, since the epilepsy began he has changed in almost every way... can anyone else relate?
I started having seizures January 2019 and was so depressed. I came to terms with this. My family have been very supportive. This takes some time to get used to for everybody.
Yes but for me it happens in stages,firstly i feel a different sense of reality, secondly i realise my coordination/balance/vision is impaired and thirdly i realise whats happening between a fog of… read more
Ive been having these for a while and when i was in school, home, etc., id get these things where i stare and cant reply to someone and cant focus. I kinda just zone out for 10-15 seconds. I dont know if thats normal for epilepsy patients or not because i always felt different because of this.
I have a couple of vision issues
1. My absence seizures, where I go into a blank stare or look like I’m daydreaming.
2. I have blackouts and blur vision.
My last EEG study proved that my blackouts… read more