Community Forum Archive

The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.

Switching to Keppra - your experiences??

Thu, 09/05/2013 - 19:48
Hello fellow Epi's ..... I'm here seeking stories, experiences, and advice. When I was 16 I started getting myoclonic jerks. This brought me to the Doc, and I was diagnosed with epilepsy. I'm on 1000mg Depakote p/day & Tranxene too (take as needed). These have been kinda working for me, however, I'm turning 27 this month... After being on Tranxene for the past 10 years I've built up quite a tolerance. 1-2 used to do the trick (stop myoclonic sensations and generalized seizures) , now, I'm up to 8-10 a day!!! and suffering more than ever! Recently, I had 3 seizures pretty close together... in fact, one was only yesterday. I'm also constantly tired and I have been suffering problems in keeping erections. I've decided it's time for a change - I'm looking into Keppra , and I was wondering if you guy's could help me with any advice, stories, experiences, etc.... Thanks in advance!! - E.T. "When going through hell.... Keep on going!!" - Winston Churchill

Comments

Re: Switching to Keppra - your experiences??

Submitted by phylisfjohnson on Sat, 2013-10-19 - 15:25
Keppra – What People Are Saying… To say the word “Keppra,” is to invite instant controversy. For some people it works, for some it doesn’t and for others, it’s a living nightmare. Yet two different studies found that clinically significant behavioral consequences of Keppra were eight percent, no higher, and maybe even lower, than those reported for other new antiepileptic drugs. John Gates, M.D., lead investigator of the adult study, neurologist at Minnesota Epilepsy Group and clinical professor of neurology at the University of Minnesota said: “The efficacy of Keppra in treating seizures, coupled with our findings of its low side-effect profile, makes it an option that should be considered, especially for those who have struggled with other treatments.” Interestingly, both studies evaluated patients with epilepsy who were proven to be drug resistant to other medications. When Keppra was approved as an add-on medicine for partial seizures, including partial seizures with secondary generalization, at the time, it was suggested that Keppra might have a universally positive effect on all seizure types. That’s all fine and good for researchers who aren’t struggling with epilepsy every day. But here’s a random sampling of what real people – like you and me – have to say… http://epilepsytalk.com/2010/10/15/keppra-%E2%80%93-what-people-are-saying%E2%80%A6-2/ Phylis Feiner Johnson www.epilepsytalk.com

Re: Switching to Keppra - your experiences??

Submitted by waitedtill60 on Sun, 2013-10-20 - 16:05

Got seizures at 60.  Started on Keppra.  Took awhile to adjust to but did pretty good on it for about 3 years.  Doing so well I asked the doc if I could come off. No seizures/no nothing

So I slowly started lessening my dose.  Started feeling really depressed; then the seizures started again.  At first just nocturnal (woke up on the floor at night - fell out of bed).  But noticed that I also felt down, depressed.  Went back to my regular dose but it continued.  Now I'm at the point where the days i don't have to work I can barely get out of bed.  Angry, depressed all the time.  The only positive is that finally, I think, I know what my triggers are.  Stress and dreading things.  I'm a fed worker who was furloughed.  The first day of furlough I woke up with my eye swollen shut.  After putting cold compresses for a day it wasn't any better so I went to urgent care.  Sitting on their table I remember her giving me the blood pressure numbers and that was it.  Next thing I was surrounded by EMS yelling at me (standard) and wanting to take me to the hospital.  I had a seizure on their table; the nurse said i was unresponsive.  I declined to go to the hospital  Eye instantly got better

After that I looked back at the other seizures I had and realized every time there was a trigger, something I was stressing over or really didn't want to do.  Now that I know that hopefully I can avoid it.  But now my newest problem is one or both eyes start twitching when I'm under stress.

I can conclude that Keppra isn' working for me anymore.  I'm tired of being so unhappy all the time; down, angry, the things I used to enjoy don't hold any joy for me anymore.  But can I afford to switch to something else; not right now.  Keep in mind with any new med comes new side effects.  A new one may very well knock me flat on my back, give me side effects that mean I can't drive anymore and if I can't drive I can't work and then can't afford anything.

So I'm making peace with the devil for right now.  Similarly, my daughter has had epilepsy much longer than I have (20+ years) already conclulded there is no cure for her either.  She takes the meds (not keppra) and just tries to stick with the one that causes the least side effects.

 

good luck

L

Got seizures at 60.  Started on Keppra.  Took awhile to adjust to but did pretty good on it for about 3 years.  Doing so well I asked the doc if I could come off. No seizures/no nothing

So I slowly started lessening my dose.  Started feeling really depressed; then the seizures started again.  At first just nocturnal (woke up on the floor at night - fell out of bed).  But noticed that I also felt down, depressed.  Went back to my regular dose but it continued.  Now I'm at the point where the days i don't have to work I can barely get out of bed.  Angry, depressed all the time.  The only positive is that finally, I think, I know what my triggers are.  Stress and dreading things.  I'm a fed worker who was furloughed.  The first day of furlough I woke up with my eye swollen shut.  After putting cold compresses for a day it wasn't any better so I went to urgent care.  Sitting on their table I remember her giving me the blood pressure numbers and that was it.  Next thing I was surrounded by EMS yelling at me (standard) and wanting to take me to the hospital.  I had a seizure on their table; the nurse said i was unresponsive.  I declined to go to the hospital  Eye instantly got better

After that I looked back at the other seizures I had and realized every time there was a trigger, something I was stressing over or really didn't want to do.  Now that I know that hopefully I can avoid it.  But now my newest problem is one or both eyes start twitching when I'm under stress.

I can conclude that Keppra isn' working for me anymore.  I'm tired of being so unhappy all the time; down, angry, the things I used to enjoy don't hold any joy for me anymore.  But can I afford to switch to something else; not right now.  Keep in mind with any new med comes new side effects.  A new one may very well knock me flat on my back, give me side effects that mean I can't drive anymore and if I can't drive I can't work and then can't afford anything.

So I'm making peace with the devil for right now.  Similarly, my daughter has had epilepsy much longer than I have (20+ years) already conclulded there is no cure for her either.  She takes the meds (not keppra) and just tries to stick with the one that causes the least side effects.

 

good luck

L

Re: Switching to Keppra - your experiences??

Submitted by Sunshine77386 on Mon, 2013-10-21 - 15:13
Moody, irritable, ready to bite your head off for no reason whatsoever. It didn't seem to help my seizures either. I didn't stay on it very long because of those reasons.

Sign Up for Emails

Stay up to date with the latest epilepsy news, stories from the community, and more.