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New here
Sun, 07/16/2006 - 11:19Topic: New to Epilepsy.com
I’m 51 and was recently diagnosed with seizures. I guess I’m better off then most, because my seizures just consist of phantom smells. The awful part about it tho is that the smell is of car exhaust and it’s just awful. The interesting thing about my seizures is that they pretty much are constant. It’s not for a couple of seconds/minutes or what ever. It’s all day long .
My doctor put me on trileptal and wanted me to build up to 450 mg twice a day. The seizures stopped at 300 and when I was doing 450, I felt totally exhausted, not sleepy, but not being able to do much of anything. So he let me do just the 300. The only problem with that is that they started coming back, so he said to try doing 450 just at night and that worked for a week or so and then they came back with a vengeance. So I started taking 450 in the morning too. So far it hasn’t done a thing and I am, once again, living with Vicks under my nose.
I’m curious if anyone else here has these types of seizures or know of anyone that does.
Comments
Re: Re: New here
Submitted by Deb833 on Wed, 2006-07-19 - 09:13
Thanks for replying.
My family knows when I'm having a seizure when they see me covering my nose with something or putting vicks up my nose with a q-tip. Lately I've been getting headaches along with them. The part I hate the most (besides the awful exhaust smell) is that they pretty much go on all day.
I have no problems with my period since I went through menopause. My periods stopped like 5 years ago. Yay!
I had started on 900mg daily but it didn't affect the seizures at all so yesterday the doctor upped my night time dose to 600. That's 1,050 for the day. I just started last night and am waiting for it to kick in. I'm having the seizure as I type and probably will all day.
I'm going to google epileptologist to see what that's all about. Thanks for the tip.
Ditto on the keep writing, you're right, it is good to know someone else on the same meds.
Thanks
Re: Re: Re: New here
Submitted by bradser on Wed, 2006-07-19 - 10:19
hi
ive just been reading yer stories, im a young mum to a 6 year old boy,who also has simple partical,im quiet amazed at how that smell is constantly with you. how annoying is that!! unlike you my little boy is too young to explain wheather he was having any deja vu incidents, but he did go on about getting a smell that me or my partner didnt get. he was properly diagnosed in february after a sleep deprived e.e.g. and is on 5mls of tegretol twice daily,his neuroligist said he used my sons weight and height to determine the dosage(maybe its different for kids!!) hes been going ok,well to be honest at the beginning of the meds he was extremely moody for about 2 months, but that seems to have settled. now hes having a few tired episodes and only last week was getting that smell thing again he also had a sleepy thing for about half a minute last night, he looked completely out of it,like he was so tired he could have just colapsed but just like that he came out of it again and was like his normal self. i dont even know if its related to his seizures but i asked him loads of questions, like, could he see properly,was he getting any pins and needles in his hands, all the tell-tale signs i was told to look out for,but he answered no. we are not back to his neurologist until november but if these keep happening i will be anxious to get him to him sooner. i was thinking that because he is getting older,as kids do or the fact that alot of my family and friends have said he has gotten so tall,maybe his dosage needs to be upped more. anyway it proberly doesnt help with your situation because hes only a child and couldnt tell you how he feels,im just glad as a mother i wasnt going mad when he use to say he was getting an awful smell,brings me abit of peace of mind
Re: New here
Submitted by SaraOwens on Wed, 2006-07-19 - 04:27
I have simple partials during the day, and the occasional Grand Mal in my sleep, if the weather's too hot or i'm going thru a life change. I take 900 MG of Trileptal per 24 hrs, and I'm still having both kinds of seizure. My simple partials consist of MAJOR deja-vu feelings, that last what seems to be a long time (probably 2 or 3 seconds). It's a pretty weird thing, but when I tell the people I'm around that I'm having a seizure (there's no outside indication), it goes away quickly. I say "Well, I'm having a seizure!! Deja-vu!" I'm going to speak with my doc about upping my meds, just a tad. I know the sluggishness you spoke of, and it is related to Trileptal. There's also a hormonal imbalance that comes with this med. I haven't menstruated for 8 months now, and it was the same before my last period. Some days I will have more than one deja-vu, and then for a few days in a row I won't have any, then one will pop up again. It really depends on stress levels for me, I think. I'm 31 and I have a 2 yr old boy. My husband can be a spoiled brat sometimes, but he's very supportive with my epilepsy. Smells, deja-vu, Simple Partials. Have you been to see an epileptologist?? I've been hearing about this option since I joined this community, and I'm going to look into it soon! Good luck, and keep writing! It's good to hear from someone who takes the same meds as myself!