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Epilepsy/Meds are Ruining my LIFE!!!!

Mon, 03/16/2009 - 21:21
Hi, I am 20 years old and I have had epilepsy for the last 4 1/2 years. I just got an MRI and my brain scans are off the chart. Apparently I am having mini-seizures in my brain. The most recent drug that I was on was Topomax. This drug literally made me stupid!. I couldn't concentrate, I couldn't speak correctly, etc....it was terrible....Now I am switching to Keppra, because Topomax wasn't controlling my seizures fully. BUT! Keppra is making me tired. I have no energy. I am a 20 year old college student. I need all the energy I have. At this rate I am going to fail out of school because of what these drugs are doing to me. I made it through freshman year because my classes where easy, but sophmore year is just too hard, with all this medical BULLSHIT! My doctor says that my concentration issues could be a result of my mini seizures in my brain. I'm considering taking a leave from college so I can get my health together, but they say that finding the right meds for you is a trial and error process that could take "awhile". I'm dying here. It sucks when you look in the mirror and you see your potential, but are not able to live it because of these god damn meds. Can anyone relate to this??????? It's driving me crazy. (btw I have had 4 seizures in my life. 2 in highschool and 2 in college) Also, the worst part about this is my parents just think I'm being lazy and I am not "trying hard enough".....Most of the time Ill be thinking one thing, but not be able to fluently vocally express it, because I'm so doped out on these psycoactive drugs. Can anyone relate here. I'm really downward spiraling.

Comments

Re: Epilepsy/Meds are Ruining my LIFE!!!!

Submitted by meowfactory on Sun, 2010-03-07 - 23:19

 Sorry to hear about everything ! Sometimes life is so maddning when we have to deal with Epilepsy and all that goes along with it. It definetly feels like we are all alone at times. It  can be tough but it is OUR life and our job to enjoy what we can. YES. OH YES, I've been on Keppra XR for a little over a month now and the 1st  three weeks were awful, my eyes felt like 10lb bowling balls and I always felt like I just got hit by a bus HOWEVER, I think my body finally is ajusting and it is worth it .....you see I was having drop seizures at a crazy uncontrolable rate...I just broke four front teeth and screwed up my knee on a couple of those seizures. And, now that I've started Keppra I haven't had any more drop seizures and i'm not losing time away from work. I have had Epilepsy for 30 years been on atleast 10 different meds and NOTHING controls them. I still have petimal spells daily and night myoclonic seizures nightly. But, the combo of keppra and Dilantin(been on that 20 years) has reduced the amount of them alot but they just won't go away. My VNS dosen't really do anything for me so times can seem frustrating.....but that's me it's who I am and will always be because of a long high fever when I was very young. It also makes me stand out and be pround that I can still work,got married, do what I want for the most part. I'm not a canidate for an operation and I'm not going to get better so I just accept that aleast I can still do alot. I have problems too with my brain sometimes thinking one way and not always saying what I mean. Hey, that's what makes us a team. We have got each other and we can understand another epileptic well. Meds suck but they do help somewhat without them you could be so much worse off. I understand ,just take those meds and see what time brings your better off and enjoy it. it could be so much worse but I know it doesn't make it any easier.  Good Luck!

 Sorry to hear about everything ! Sometimes life is so maddning when we have to deal with Epilepsy and all that goes along with it. It definetly feels like we are all alone at times. It  can be tough but it is OUR life and our job to enjoy what we can. YES. OH YES, I've been on Keppra XR for a little over a month now and the 1st  three weeks were awful, my eyes felt like 10lb bowling balls and I always felt like I just got hit by a bus HOWEVER, I think my body finally is ajusting and it is worth it .....you see I was having drop seizures at a crazy uncontrolable rate...I just broke four front teeth and screwed up my knee on a couple of those seizures. And, now that I've started Keppra I haven't had any more drop seizures and i'm not losing time away from work. I have had Epilepsy for 30 years been on atleast 10 different meds and NOTHING controls them. I still have petimal spells daily and night myoclonic seizures nightly. But, the combo of keppra and Dilantin(been on that 20 years) has reduced the amount of them alot but they just won't go away. My VNS dosen't really do anything for me so times can seem frustrating.....but that's me it's who I am and will always be because of a long high fever when I was very young. It also makes me stand out and be pround that I can still work,got married, do what I want for the most part. I'm not a canidate for an operation and I'm not going to get better so I just accept that aleast I can still do alot. I have problems too with my brain sometimes thinking one way and not always saying what I mean. Hey, that's what makes us a team. We have got each other and we can understand another epileptic well. Meds suck but they do help somewhat without them you could be so much worse off. I understand ,just take those meds and see what time brings your better off and enjoy it. it could be so much worse but I know it doesn't make it any easier.  Good Luck!

Re: Epilepsy/Meds are Ruining my LIFE!!!!

Submitted by alangill on Mon, 2010-03-08 - 04:22

Hey

I sort of understand how you feel. I'm a 19 year old college sophmore and while my meds are not giving me the same side effects you have I understand the extra stress it adds. I get tonic- clonic seizures when I miss a dose or dont get a lot of sleep which is hard to mange at school. I've ended up having a seizure right outside of my organic chem lab because it was 8 am... I was just happy I wasnt actually in the lab yet. I had a seizure in front of my old roomate who freaked out and told me I gave her nightmares... needless to say I moved out a few weeks later. I had one before a test and couldnt focus on it because I was exhausted, and have most reccently broken my laptop durring a seizure. The best thing I can suggest if you don't want to go on medical leave is be upfront about it. Most prof are understanding and just want you to do well, so if you explain it to them early enough and ask for more time on a paper because you'll be sleeping twice as much as the averge student they will almost always understand. Most colleges will offer extra time on tests if you have a serious imparment focusing, I dont need extra time but I know some friends who get it. And if you can avoid generic drugs... when I went on the generic form of lamictal I started to have more seizures even when I wasnt missing doses or staying up late.

Hey

I sort of understand how you feel. I'm a 19 year old college sophmore and while my meds are not giving me the same side effects you have I understand the extra stress it adds. I get tonic- clonic seizures when I miss a dose or dont get a lot of sleep which is hard to mange at school. I've ended up having a seizure right outside of my organic chem lab because it was 8 am... I was just happy I wasnt actually in the lab yet. I had a seizure in front of my old roomate who freaked out and told me I gave her nightmares... needless to say I moved out a few weeks later. I had one before a test and couldnt focus on it because I was exhausted, and have most reccently broken my laptop durring a seizure. The best thing I can suggest if you don't want to go on medical leave is be upfront about it. Most prof are understanding and just want you to do well, so if you explain it to them early enough and ask for more time on a paper because you'll be sleeping twice as much as the averge student they will almost always understand. Most colleges will offer extra time on tests if you have a serious imparment focusing, I dont need extra time but I know some friends who get it. And if you can avoid generic drugs... when I went on the generic form of lamictal I started to have more seizures even when I wasnt missing doses or staying up late.

Re: Epilepsy/Meds are Ruining my LIFE!!!!

Submitted by annegeorge on Tue, 2010-04-27 - 12:28
This is so true. Take advantage of the disability office availability, even if it is embarassing. Professors are understanding about neurological/brain issues.

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