I'm 34, female,and have had partial complex seizures from the left temporal
lobe and am on tegretol.
My seizures often come when I'm reading, writing, watching PC.
While I'm having seizures,I see strange and scary images in my mind, like a lot of characters( big and small), a lot of people trying to catch me from behind, sometimes people shouting unrealizable words at me etc.
They are so scary!
My doctor says I'll have to be on medicine for the rest of my life.
Now I'm out of job and am not going well with my partner, either. I feel miserable everyday.
I don't have friends who I can tell about my epilepsy, too.
I'll be grateful if anyone would give me any advice or any words.
I'd like to share something.
Hello Hanako and welcome to the board. I too have been told I have Partial Complex seizures and have them mostly when I read or write. I also have them when I am in a store with flourescent lighting. Mine are a bit different from yours though, it must be very frightening to see those images. I see something like a shadow and think there is someone standing beside me, when I turn no one is there. I also expeirence a strange feeling in my head. I have always had a hard time descibing it, I would say it was like a shock or wave in my head. But last night when I was going to sleep I kept having one of those muscle twitches in my leg and when I thought about it, it is quite similar to what I feel in my head. I am going to ask the doctor when I see him next. I also become confused, tired, irritable and cannot remember what was happening before the seizure.
I too lost my job over this and am trying to struggle through with SSA Disability in hopes they can retrain me for a job that would be suitable for my disabilities. Is there something similar to this in Japan? Or even a support group to help you?
I lived in Japan as a little girl and know a little japanese. Although I don't think I could type the proper way of spelling the words I know. So lets see if I get this one right: Nihon go-o scoshe hana she mas. I probably did not get it right so please don't think I mean any insult.
I hope you all the best!
Although I don't know much about the type of epilepsy you have or your medication, I know that expressing my feelings about my epilepsy has helped me get through the toughest times. Amongst other people, I talk to my doctors, my friends and family and people on this board. Writing on the board is perhaps special because most of the people here experience things similar to me, or know somebody who does. We can share our feelings and experiences here and offer advice and support. I've found that talking to people close to me is important, because they need to learn how to live with my epilepsy just as much as I do.
Thank you for your heart-warming replies. I'm so glad!
Yes,tegretol is the only medicine I have taken. My doctor is not a specialist of
epilepsy, so I'm not sure this is the best medication for me.
Your triggers are reading, writing and seeing lighting? What a relief to know that I'm not the only one!
I can somehow understand your conditions at the time of your seizures, although they are not completely the same as mine.
I think there are support groups in Japan as well but I have never contacted to them yet. Maybe now I need their help.
Recently I very much often stay up all night and have quarrels with my partner.
This is not good for me but we can't stop it. I think this is making my epilepsy worse.
By the way, anata no nihongo wa totemo zyouzu yo! arigatou!
Thank you for your words of encouragement.
I wish you good luck, too!
I feel the same way. Expressing my feelings about my epilepsy will help me get through tough times. This board definitely helps me! I just hope There
are friends close to me who I can be open and tell about my epilepsy...
your best bet is to go to a neurologist and have them check you out maybe go through an mri or eeg and then go from there but in my books tegretol is not a good medication bye itself to be on. try carbatrol it doesnt affect you hardly at all and it works 12 hrs a dose.
As probably many people could tell you lack of sleep and stress are tied to having seizures and you need to avoid it.
Now let me real blunt. Someone who is truly your partner and cares for you should understand this and be of help. Those that come to grips with seizures are those that have support from those around them. Don't make it controversial, ask for love and support.