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Cheryl J

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Hi everyone, I'm new to this site, but it's good to know that there are people out there that don't mind talking about "E". I have "E". I don't know when they occur and I don't feel them coming on. They come and go as they please :) I was diagnosed with E when I turned 40 yrs. old, I'm now 54. Is there anyone out there that has this problem of not knowing when they are coming on?
 
Welcom Cheryl.

Oh yeah..... I know when some are about to come, others not at all. I have days when I feel like I"ll have one & don't then other days I feel as though I'm less likely to have one then than any other time & I have one anyway.
 
Hey there and welcome!

I pretty much don't know when my seizures are coming on either.
 
thank you. Do you still go to work everyday? I've had several seizures at work and the effects of it was so embarrassing. I had to go home to take a shower and I didn't return to work until the next day hoping that no one said anything.
 
I only work part time now, generally three or four days a week. Luckily i've never had a tonic clonic at work, just partials. They can make me very tired and confused, but i can pretty much muddle on until it's time to traipse my a**e back home again lol :P

Do your colleagues know about your seizures?
 
Hi, Cheryl,

Welcome to the forum! I'm glad you found us. :)

Sometimes I feel mine coming on, sometimes not. Sometimes I feel awful all day, "seizury" and later in the day there's the seizure. Not great. I try to stay away from people and tasks on those days because I screw up everything I touch. Some days I feel pretty okay, and don't have one, some days I feel pretty okay and I do.

I think it was a few days ago...??? (my memory is really bad) I had a simple partial brought on by light flickering through the trees as I drove. (yaaaay! I can drive again!) Then I was in a Subway restaurant and I felt like I was going to have a complex partial if I didn't get out of there. So I left, and QUICK. On my way out I noticed they had a ceiling fan. Ceiling fans are a problem for me.

It seem seizures are fickle. They can warn us they are coming, or come unannounced out of nowhere. They can be minor, they can be big. They can make us confused or exhausted or have headaches or zap our memory, or they can leave us perfectly fine. They are a sneaky bunch, with gorilla tactics. Hard to fight. The meds help.
 
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Yes, they know, but I don't think they understand exactly what's happening when it happens. They think that i should be swallowing my tongue and all that goes along with the myth of what a seizure is. It's funny, how they pictured a seizure. :~)
 
Oh I'm so glad you said that because my memory is shot! I have a very hard time remembering names. My vision is shot as well. My doctor says this comes from the medication (Tegretol 200 mg). And you are blessed because you can drive. I was told that I probably wouldn't be able to drive again. I have had 4 bad accidents. One was so bad where someone died. I still feel so bad about that. The family wanted to have me incarerated. I can imagine how they felt with losing a loved one.
 
Cheryl J said:
Hi everyone, I'm new to this site, but it's good to know that there are people out there that don't mind talking about "E". I have "E". I don't know when they occur and I don't feel them coming on. They come and go as they please :) I was diagnosed with E when I turned 40 yrs. old, I'm now 54. Is there anyone out there that has this problem of not knowing when they are coming on?
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Hi Cheryl,

I was diagnosed with E 6 yrs ago at the age of 44, I too never know when my seizures are coming on, I have Complex Partials in the form of Absences and I get Auras, go into a blank stares, have speech problems(which is very frustrating) and forget things like that I've a frying pan on the stove or a tap running and as I spend most of the time on my own it's also very difficult for me tell when I've had a seizure unless it's obvious like the taps or frying pan, I find it very frightening at times :cry:. I have warned all my friends that if they see me "blank out" or stumble over words not to worry or panic just tell me that it's happened. I'm sure there are lots of people like us who don't know when the seizures are coming on or when they've had one.

Take Care
Anne
 
Thank you AnneC. Yes I have the blank stares too. I also forgot that I had something cooking on the stove and almost burned my place down. I spend a lot of time by myself as well. I have children, but they're adults now, so it's all on me. I'm a member ot the epilepsy foundation here in my city and they suggested that I get a trained dog. what do you think?
 
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Getting a dog might be a good idea, must investigate that option here in Ireland.

I noticed in one of your posts you said you were on Tegretol, I don't want to be the bearer of doom & gloom but a word of warning about it, I was put on it 5 yrs ago because seizures returned after 10 mths on Lamictal (which affected my vision) it can cause a rash and in my case a severe one, have been on Topamax since. I wonder is there anyone else on this site that had the same reaction to it????

Take Care
Anne
 
You know Anne, I have a rash but I thought it came from something I had eaten. OMG. how is the Topamax? what mg. do you have?
 
Hi Cheryl

I find Topamax is fine, was on 75mg twice daily until seizures returned in December last(after 4.5yrs) now am on 75mg in morning & 100mg at night, though from what I've read it can cause depression, I suppose it's a case of weighing up the pros & cons of the meds. I would advise getting that rash seen by a dr.
 
Hi Cheryl and welcome :hello: I hope that you find everything that you need here, from friendly conversation to advise and the ability to rant! Glad to have you!
 
Welcome Cheryl!

It's a great party here, and we're glad to have you join!

Best,
Nakamova
 
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