Newbie!

[StevieBeeeee]

Hello all! op:

So I recently (beginning of Jan) was diagnosed with temporal lobe epilepsy. I have simple partial and complex partial seizures. I'm 21 years old and this is the first time I have ever been aware of having seizures. My mom used to tell me when I was a baby I had seizures but unfortunatly she passed away 2 years ago so I can't talk to her about them and I have no other family members. I'm not even sure if these seizures were related to epilepsy. More then likely yes.

Well this whole thing is just extreamly scary and unreal. I'm getting a little tired of waking up and not knowing where I am or how I got there (ie: laying in the bathtub in high heels with a bottle of unopened wine and my ipod on full blast! haha)

Not to mention now my job (where I have worked for 3 years!!) has threatened to fire me if I miss anymore work but with out my seizures under control there isn't anything I can do! They make it seem like I am making it up like I just dont want to go to work but I love my job and I really dont want to lose it. I have been advised that the best course of action would be to go on disability until we can get everything under control.

The worst part about everything is I have always LOVED to read and study (I know very nerdy of me haha) but topamax has me really confused most of the time and really absent minded. Half the time I lose my train of thought and the other half the words are stuck in my head and I can't get them out!!!

I have been trying to talk to my friends about this but none of them seem to get it.... its almost like they expect me to just get up and go right after I have an "episode" and thats just not possible sometimes. So its really nice to find somewhere where people actually know what I'm going through!!!!!

:banana:

 

[epileric]

Welcome Stevie

Good to have you here. I've found everyone to be extremely supportive but even better........ extremely informative. There's a good variety of different people with different experiences to share from.

I've never had to get used to having epilepsy since I was born with it but this might help you get a better idea of what you're dealing with http://www.coping-with-epilepsy.com/forums/f23/epilepsy-101-part-faq-part-tips-advice-1255/ anything else, I hope you're comfortable asking.

I do know what you're talking about when you mention being confused & absent minded. I've been like that most of my life but the worst & most recent was with Keppra. When I finally read a sentence enough times that I could finally remember it, I wouldn't be able to remember the next sentence without forgetting the first.

Is Topomax the only anti-epileptic drug (AED) you've tried so far? If so you might want to try something else that has less side-effects. I've learned that I have to balance how well my meds control my seizures with how much they let me function normally. No use not having seizures if you can't function in daily life.

There are also numerous alternative way of treating seizures. They are like the various AED's the doctor will give you in that they effect everyone differently- what works for one person may not for another. There are numerous people on this site though that have tried a lot of the various alternative treatments so you can get some feedback. http://www.coping-with-epilepsy.com/index.php?p=alternative-treatments

 

[jimijimenez]

Hi Stevie!
welcome! theres good people up in here!
Im also a temporal lobe epilepsy, simple partial and complex partial, and 29 yrs. Unfortunately the drugs have various side effects, and at first I found them intolerable! It can take sometime to find the right one or combo.
Keppra has less foggy sedation than most (but can make you angry and agitated) but if you can tolerate that it might be worth looking into. It can be hard managing work & side effects at first but it generally gets better!
what subjects do you like studying?

 

[jimijimenez]

Oh yeah... and don't worry too much about what people think about your fits, mood etc. Your right people don't have a clue, and its often best to ignore their perceptions. Part of the psychological problem of living with TLE, is just that, to experience so much weird,bizarre disturbing stuff, and have no tangible "wound" to show others for it. And then they wonder why your acting "funny"!
Anyway I know what your going through stevie.

 

[Sheri]

:hello: Hello and welcome!

 

[Loopy Lou]

Hello, i also have temporal lobe epilepsy. I was diagnosed in march of this year, and i'm still adjusting to meds. I'm on Lamotrigene.

I know how you feel about the reading and studying. I've always been a learner and recently i can't hold things in my head which is very frustrating, especially where my work is concerned.

Not to mention now my job (where I have worked for 3 years!!) has threatened to fire me if I miss anymore work but with out my seizures under control there isn't anything I can do! They make it seem like I am making it up like I just dont want to go to work but I love my job and I really dont want to lose it. I have been advised that the best course of action would be to go on disability until we can get everything under control.

Do you not have laws over there which say you can't be fired on medical grounds? Everytime you have a docs appointment, or report or anything like that, photocopy it and send the copy to work. I do this too. The problem then is what happens if you have a seizure, as bosses in general tend to be very sceptical.

I'm getting a little tired of waking up and not knowing where I am or how I got there (ie: laying in the bathtub in high heels with a bottle of unopened wine and my ipod on full blast! haha)

You should have a look at the "you know you have epilepsy" thread in the Lemonade stand forum. We make our own fun round these here parts :banana:

Anyhoo welcome to the site, hope you enjoy it. Loads of people here to talk to who all have different experiences, and i know i've found it really helpful :woot:

 

[StevieBeeeee]

Hello to everyone!! And thank you all for such informative information! It's so nice to actually find people who know what I'm going through. It's hard to find that in a small town like mine! I am going to see my neuro today and I'm going to discuss other options for treatment. Maybe that will help settle all the confusion going on in my head constantly.

I'm currently majoring in Psychiatry with a minor in enviromental studies and art history.

My state does have laws that will protect me against getting fired... but I work for a giant corporation who doesn't really want the liability (ie: me!) around. Plus I work on a computer for 8 hours a day and I have the screen flashing in my face constantly which has triggered seizures before so I'm not even sure if I can keep this job. I can't quit though... I need the money (rent!!) and health benefits!!!

 

[epileric]

I work on a computer for 8 hours a day and I have the screen flashing in my face constantly which has triggered seizures before

Have you considered getting a reflection screen for your computer to see if it helps? I'm looking for one for myself right now & they're expensive ($60 plus taxes in Canada) but hopefully worth it.

 

[Meetz1064]

Hi, hello

and how do you do, StevieB! It's nice to "meet" you!!

Epileric has a good idea with the reflective screen....you might also consider getting glasses that have a blue tint to them...these tend to help with photosensitivity also, which is something that you appear to have...

Have you considered keeping an E journal in order to help find all of your triggers? It is possible that there are others, besides the computer---such as your cycle (if you're female), foods (like me--and others here) and in some cases, even music or exercise. I have a nice list of things to keep in a hournal if you'd like it. Just let me know.....

As for your employer....talk to your doctor about this. Perhaps they can tell you more about your rights, etc there.

 

[Bernard]

Hi Stevie, welcome to the forum. :hello:

Is your computer monitor an LCD or CRT? LCDs have less flicker and are easier on the eyes.