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Sick: Sick of seizures, sick of my life
Tue, 08/17/2010 - 04:49Comments
Re: Sick: Sick of seizures, sick of my life
Submitted by cvtkeri on Tue, 2010-08-17 - 20:14
I'm whole-heartedly with you...It is so difficult, this "living with Epilepsy". I was diagnosed when I was a kid. Had some petit-mal seizures in my 4th grade class. I was one of the "lucky" ones because my teacher had a child with absence seizures so she knew right away that I wasn't ingoring her in class. My parents got me on meds right away. So, I lived on Depakote and Depakene until I was 17 or 18....right around my first menstral cycle. It messed up my life so badly, I'm not ashamed to say that I've thought about suicide alot. I gained ALOT of weight with the Depakote. So my position in high school was the overweight and "the smart girl". Two combinations that don't really go together well when you're trying hard to fit in.
My first Grand Mal happened when I started college. Ya that was a blast!!! I was lucky again tho because I had my best friend with me when it happened. Scared the crap out of her, that's for sure! lol
In 2006, my neurologist and I weren't having much luck with getting my seizures under control. I was at the "max dosage" of Lamictal and was taking Keppra. Nothing was working. I'd go a few days, weeks, maybe even months, but I was still seizing (Grand Mals, Petit Mals, and Complex Partials). So, together we decided to try the VNS implant. I was so excited because it was touted as this "miracle"...that it would give me control and that I'd be able to get off meds all together (that was the big one for me...I hate taking meds). I had the surgery but haven't seen any improvement.
As a matter of fact, I've seen an increase in my seizures in the past few years. I have an endless battle with epilepsy and depression. I have a new doc (I moved to Las Vegas 2 yrs ago). I have only visited him once but I don't really have much faith. I told him about increase in seizures, not sleeping well, and having more frequency of seizures during my menstral cycle. All he would do is give me some Ambien. He didn't check my VNS, he didn't really spend much time with me at all. His office was crazy busy because there are only 2 docs.
So, here I am. I'm unemployed. Living in my parent's apartment. Have finally had to make the hardest decision ever, I've applied for SSI disability. I've never wanted to go the Epilepsy as a disability route but now I have to and honestly, it makes me even more depressed! Some days, I don't want to do anything. No going outside or even get out of bed.
I found this site and it is heaven sent---because I see that people are experiencing the same things I am. Makes me feel a little less "freakish". I feel I can talk with you all and you'll understand what I'm trying to say. That's a blessing, it truly is! Maybe things aren't as bad as I feel they are, maybe I can get some perspection on exactly what Epilepsy does to a person.
You know what I miss the most? Driving! The simple pleasure of being able to go somewhere whenever I want to. Not having to beg for rides. Not having to wait around for the person to pick me up or drop me off. I miss that every single day.
I truly hope, MichealK, that your surgery is a success! I will pray for your speedy recovery.
Everyone, I want to put this out to you all.....Take care of you! Be safe! And try not to stress yourselves out! Keri
I'm whole-heartedly with you...It is so difficult, this "living with Epilepsy". I was diagnosed when I was a kid. Had some petit-mal seizures in my 4th grade class. I was one of the "lucky" ones because my teacher had a child with absence seizures so she knew right away that I wasn't ingoring her in class. My parents got me on meds right away. So, I lived on Depakote and Depakene until I was 17 or 18....right around my first menstral cycle. It messed up my life so badly, I'm not ashamed to say that I've thought about suicide alot. I gained ALOT of weight with the Depakote. So my position in high school was the overweight and "the smart girl". Two combinations that don't really go together well when you're trying hard to fit in.
My first Grand Mal happened when I started college. Ya that was a blast!!! I was lucky again tho because I had my best friend with me when it happened. Scared the crap out of her, that's for sure! lol
In 2006, my neurologist and I weren't having much luck with getting my seizures under control. I was at the "max dosage" of Lamictal and was taking Keppra. Nothing was working. I'd go a few days, weeks, maybe even months, but I was still seizing (Grand Mals, Petit Mals, and Complex Partials). So, together we decided to try the VNS implant. I was so excited because it was touted as this "miracle"...that it would give me control and that I'd be able to get off meds all together (that was the big one for me...I hate taking meds). I had the surgery but haven't seen any improvement.
As a matter of fact, I've seen an increase in my seizures in the past few years. I have an endless battle with epilepsy and depression. I have a new doc (I moved to Las Vegas 2 yrs ago). I have only visited him once but I don't really have much faith. I told him about increase in seizures, not sleeping well, and having more frequency of seizures during my menstral cycle. All he would do is give me some Ambien. He didn't check my VNS, he didn't really spend much time with me at all. His office was crazy busy because there are only 2 docs.
So, here I am. I'm unemployed. Living in my parent's apartment. Have finally had to make the hardest decision ever, I've applied for SSI disability. I've never wanted to go the Epilepsy as a disability route but now I have to and honestly, it makes me even more depressed! Some days, I don't want to do anything. No going outside or even get out of bed.
I found this site and it is heaven sent---because I see that people are experiencing the same things I am. Makes me feel a little less "freakish". I feel I can talk with you all and you'll understand what I'm trying to say. That's a blessing, it truly is! Maybe things aren't as bad as I feel they are, maybe I can get some perspection on exactly what Epilepsy does to a person.
You know what I miss the most? Driving! The simple pleasure of being able to go somewhere whenever I want to. Not having to beg for rides. Not having to wait around for the person to pick me up or drop me off. I miss that every single day.
I truly hope, MichealK, that your surgery is a success! I will pray for your speedy recovery.
Everyone, I want to put this out to you all.....Take care of you! Be safe! And try not to stress yourselves out! Keri
Re: Sick: Sick of seizures, sick of my life
Submitted by abelle on Fri, 2010-08-20 - 08:50
Keri,
Wow, you just duplicated my epilepsy history almost to the tee. (Mine started at 23.) My VNS has not seen any results either. I'm still on to much medicine. The job, driving, everything. Yes, I do get sick of seizures! This site is a good coping tool. As a matter of fact I just signed on because of being over whelmed/depressed. We will keep going though and we will make it through this. Thank you.
Belle
Keri,
Wow, you just duplicated my epilepsy history almost to the tee. (Mine started at 23.) My VNS has not seen any results either. I'm still on to much medicine. The job, driving, everything. Yes, I do get sick of seizures! This site is a good coping tool. As a matter of fact I just signed on because of being over whelmed/depressed. We will keep going though and we will make it through this. Thank you.
Belle
Re: Sick: Sick of seizures, sick of my life
Submitted by Addibaby on Sun, 2010-08-22 - 00:48
Michael, I just want to let you know that you having meaning. You and the others on chat really helped me figure out what to talk to the doctors about and not to be scared about Addisons e. Keep your head up and think about all the good things in your life. Like your friends on this site! :)