Coping with epilepsy meds...

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aew432

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Hi everyone.

I am new to this page. Im currently overwhelmed with the confusion of my situation. I feel bad complaining because after reading some of your stories, mine in comparison is nothing. But that is partially where I feel so torn. I am 24 years old. 1 and a half years ago I had an absense, tonic clonic seizure in the middle of shopping. It was after an extraordinarily stressful day in an extraordinarily stressful week in an extraordinarily stressful time in my life. Ive had a normal EEG and an EEG that shows some epileptiform abnormalities. My doctor has told me that in most cases people my age who have that type of seizure have had seizures earlier in life that went undiagnosed. I chose to medicate and I am taking Topamax. I read that some of you take 400mg of Topamax daily. I am only taking 100mg daily! I hate how I feel on it. I hated Kepra, Dilantin and all of the others that I tried. I mean it is hard to work. I feel dizzy and tired and forgetful, woozy. I hate that it impacts my job. I mean how do you people work with all of these drugs??? When I ask myself if Id rather feel this way and not have another seizure the answer is always yes, but I wondered if there is anyone else in my situation who chose to medicate, or to not medicate...I feel constantly in fear. Im sure my attitude will change over time being seizure free. But for example, just a few days ago I had my first migraine and all I can think about is "oh god. here it comes..."

I do not know anyone who has any personal experience with this and would love to hear anyones thoughts on anything.

Amy
 
It's good to meet you and you've come to the right place for help with your answers. Don't worry about complaing about things either, we all do it on here too:lol:

If you've been a year and a half with out having a seizure you could maybe talk to your dr about going off the meds and see what he has to say about it, since they make you feel like crap.

I don't know however if the migranes cause you to have a seizure or not. If they do then that should be something to think about before stopping your meds.

I'm sure others will also have some suggestions for you too, but feel free to ask anything and you will always get help!
 
Hello aew432. I understand what you're saying. I have tonic/clonic seizures, though if I take medicine of some sort, I do not. So it is a choice to make. Every time I began to think do I really need to take this stuff, and tried not to, I'd have a seizure. And low doses of 4 different kinds all worked for me.

I've gone 2 years without taking medicine, then had a seizure. You're right, many many people would like to have the control you and I have.

So, for us, the ongoing issue is managing the side effects. I left college after scraping through 2 years...I could not stay awake in class. I know my inability to work in those early years was from my medicine. Thinking and remembering is harder, woozy, all of that. And how about the depression or mood swings.

I've never taken Topamax, so don't know what that actually feels like. Some meds are better tolerated than others by some people, you just have to find what works for you and what you can manage to live with. I was much better on tegretol than others I'd taken, and I'm not so sure about the trileptal I'm on now. Just got up from a 3-hr nap in the middle of the evening because I was so tired. Makes enjoying life difficult. It's a day to day thing.

Welcome!
 
Hi aew432, welcome!

I know it can be tough to weigh side effects vs. seizure control. If the "Dopomax" side effects are intolerable, then you have a few options: ask your doc about lowering the dose; ask your doc about going off meds altogether; ask your doc about trying a different med. You mentioned trying Dilantin and Keppra. Have you tried Lamictal? It has a reputation for having the fewest cognitive side effects. It's far from perfect, and it's not for everyone, but it may be worth a try.
 
Hello! I like you was diagnosed as an adult and my dr said the same thing about most people having seizures (mine are complex partial) earlier on and not being diagnosed although I can't recall anything that could have been considered a seizure other than a febrile one as a baby. I started out on tegretol and while it controlled my seizures I literally could not function. I would go to bed at about 9pm and wake after 7am have a shower and then be physically exhausted, all I could do was sit on the couch and had no energy to move and eating made me nauseas and I had a toddler to run around after so life was pretty miserable. My dr changed me to lamictal and I have stayed seizure free, nearly 3 years in total now and feel great. The only indication of epilepsy with me now is that I take medicine twice a day. The process of changing meds sucks but if it means you can find one that keeps you seizure free and able to function then it might be worth trying. I'm sorry you are having troubles, I hope you can find something to help.
 
Sorry that you are having problems..I think you will get a lot of support on this forum..just wanted to say hello to you :)
 
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