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epileptic and non epileptic seizures
Sun, 08/06/2006 - 13:10Topic: Parents & Caregivers
hi
my 16 yr old daughter has been told she has photosensitive epilepsy but she also suffers with non epileptic seizures as a result of the epilepsy.
doctors think that in feb they should reduce her meds to see which are which
does anyone else appear to have this problem?
any help and advice would be much appreciated
Comments
Re: Hi Hayley, It was great
Submitted by hayley on Sun, 2006-08-06 - 16:08
Hi Dayna
Was great chatting with you also, for the last yr we have gone round and round in circles looking for answers lol
Auburn is a pretty quiet person and generally wont allow all this to get to her or rather take over her life so to speak, she has a great circle of friends who like us have learned to understand her and her seizures, gets hard at times tho trying to get her to slow down when things get tough, she sometimes gives the impression that she shouldnt slow at all because then her seizures win but trying to teach her in a manner of speaking that taking it just a little bit easy after a seizure doesnt mean that the epilepsy has won, ISNT EASY lol
look forward to many more chats i hope
best wishes
Hayley
Re: Re: Hi Hayley, It was great
Submitted by IRule on Sun, 2006-08-06 - 19:17
LOL Hayley, Trying to get any teenager to take it easy is a challenge. I usually have at least 5 14-15 year old girls running in and out of here at one time or another...only 1 of which belongs to me.
I am sure she understands computers, tell her her brain needs to reboot after a seizure. Someone(sorry can't remember who it was) on here said that is what their brain does...reboots, it cracked me up, I like it though, makes sense to me.
I like her spirit, that will help her fight whatever comes her way. However let her know that rest is Extremely important in keeping the seizures away. Lack of sleep is a Big Trigger for many of us.
I hope to talk to you again soon.
Dayna
Hi Hayley, It was great
Submitted by IRule on Sun, 2006-08-06 - 14:32
Hi Hayley, It was great meeting you in Chat, and as we discussed I too have the photosensitivity and the Nes along with the Epilepsy. The Doctors in all their wisdom took me off all meds thinking that it was NES and told me to go see a Psychiatrist. After I had a few choice words for them, which I can not say here without getting my hand slapped...I was removed off all meds. My seizures were worse than ever, and I was angry on top of it. I finally got to see an Epileptologist that said hey Guys...her seizures were responding to the Zonegran...NES don't respond to AED's...put her back on her meds! That was last summer. And my seizures have been completely under control now for the last 5 months. I do take Xanax and that seems to help with the stress, which appeared to bring on the NES issues. Dayna