Hi everyone,

Sorry it has been so long. I got in the middle of finals and lost touch. Well, since the last time I posted I'm on a new med. I was allergic to the Trileptal so now I've been on Keppra for about a month. Bad news is I had a grand mal seizure on Sunday for the first time in a year. It's only my 2nd--little scary. It was a doozy and I have been out of it the whole week. I'm wondering how Keppra has worked for anyone else. I don't appear to be having side effects like with Dilantin or Trileptal but who knows if it is working yet. My neuro is increasing the dosage so maybe that will work. He's got me on this bc I appear to not have a really bad case of epilepsy.

Take care and thanks

Jason

I would prefer to call Keppra a blessing. I had tried numerous drugs to control my "flops" for over 10 years. None worked. My past neuro. passed me off to an Ep. who tried Keppra. I have had no major "flops" since. A few "auras", but that's been it. I take 3000mg a day

Hi everyone,

Sorry it has been so long. I got in the middle of finals and lost touch. Well, since the last time I posted I'm on a new med. I was allergic to the Trileptal so now I've been on Keppra for about a month. Bad news is I had a grand mal seizure on Sunday for the first time in a year. It's only my 2nd--little scary. It was a doozy and I have been out of it the whole week. I'm wondering how Keppra has worked for anyone else. I don't appear to be having side effects like with Dilantin or Trileptal but who knows if it is working yet. My neuro is increasing the dosage so maybe that will work. He's got me on this bc I appear to not have a really bad case of epilepsy.

Take care and thanks

Jason
:wave: my son was on tegretol and was having seizures while being on it..they found he was having 2 types of seizures and put him on keppra along with his tegretol...and he is doing much better.....good luck to you....it is working good for my son......

jason, my son is on keppra and it's working great for him. he's been on it for a month and has been seizure free most days. he used to have 1 to 3 simple partials almost every day. now he's only had some on very stressful day and days with little sleep.
i hope it works for you.

Hi,
I also just started on Keppra- I was allergic to Topamax. I have done really well with it- For a while I had been having more Complex partials and Simple partials than I did for a long time. This really seems to help with that- I haven't had any episodes in the month I've been on Keppra. It does make me extremely tired- I have only made it through one day (this weekend) without a nap. I am taking 2,500 mg- I just decreased by one because of the tiredness. I think Keppra is specific to Partial seizures. Do you have gran-mals? That might have something to do with it not working correctly. A lot of people use it as an add-on med (I think)
Good luck-
Rebecca

Hi,
I also just started on Keppra- I was allergic to Topamax. I have done really well with it- For a while I had been having more Complex partials and Simple partials than I did for a long time. This really seems to help with that- I haven't had any episodes in the month I've been on Keppra. It does make me extremely tired- I have only made it through one day (this weekend) without a nap. I am taking 2,500 mg- I just decreased by one because of the tiredness. I think Keppra is specific to Partial seizures. Do you have gran-mals? That might have something to do with it not working correctly. A lot of people use it as an add-on med (I think)
Good luck-
Rebecca hi i posted before but wanted to add
something...my son has clonic tonic seizures(grand mals)and myo clonic seizures which is sudden jerks for no apparent reason and that is why keppra was added to my son's meds along with tegretol......and he is doing much better...good luck to you.....

I would also like to add my comments on Keppra

FANTASTIC, VERY FEW SIDE EFFECTS, VERY FEW SZRS IN THE LAST 10 MONTHS.....

Keppra has been a blessing for me - fairly new here in the UK but working well for me I am on 3000mg per day, taken with 10mg of Clobazam. I will agree with previous posts I am more sleepy a few mad mood swings in the begining but other than that no real problems.

The only thing I will say is remember to take them 12 hours apart this was drummed into me by both GP and Nuro and the only time I have szrd it has been due to me 'slipping' and taking my drugs late.

After 17 years on 15-20 szs a month I have had less than that in the last 10 months probably 10 and when I do have them I seem to recover much quicker than I did on horrible, crappy Epilim.......

Hope all is going well with anyone else trying a new treatment

:wave:
Hiya, I have generailsed seizures which means I have all sort of different seizures where I Lose consciousness and hurt my self very badly and have a very abnormal brain so no one doesn't know what they can do to help but stick me on loads of med. I have been on keppra for about half a yr now and I found it so much better then all the other meds I've been put on. I myself haven't had any side effects but of course feeling very tired because I'm on a high dose.it kicks in very fastly which is good because hopefully you'll not have any seizures that were as bad before (if you understand that).
Keppra has helped me very much but because I have so many fits they have put me on epilim aswell.I hope you get on with it and wish the best for you.take care. :angel: Jo. P.S. if you have any more questions I'd be happy to try and answer them for you.

I am very happy the Keppra is working for you. My daughter has been on it for about 6 months, taking 1000 mg/day. She just weaned off Depakote (1250 mg/day) cause it was causing her severe stomach pains and may have had something to do with a small lump that formed in her breast (she is only 15). She is now going off the Keppra and onto Lamictal. While the Keppra did control her seizures and jerking, it came at a heavy price for her. She began experiencing problems with short term memory (couldnt remember music scales she learned 3 yrs ago, not to mention her other classes), her coordination and balance were also greatly affected (she plays soccer, spent most of season on bench). We begin decreasing the Keppra next week and really hope that these problems clear up, she is an honor student and to be getting C's and D's has been difficult for her to handle emotionally. Best of luck to you.

Hi Timbercat,

Our daughters are the same age and on the same meds...what type of seizures does your daughter have? Katie has Complex Partial and Simple Partial. She plays piano (7 years), gets excellent grades (90% overall average in 7 classes) and plays golf, softball (pitcher and 2nd base) and is working on her 2nd degree black belt in Tae Kwon Do (7 years). Happy to hear your daughter is able to take part in activities she enjoys as well!

Katie is currently on Keppra (3000mg/day) and Lamictal (400mg/day). Both have been ok...but she is not totally controlled. We are currently pursuing surgical options. We are nearing the end of the process (began May 2003)and will know in April, for sure, if Katie is going to have surgery. You can read all that we have been through under the thread "Epileptologist! Looking for a board...

Take Care and my best to your daughter,

Vicki
mom of Katie, the most courageous young lady I know

Hi Vicki,

Megan is 15 and a freshman in high school. Yes, she has been lucky to be able to continue all the activities she enjoys and has had some very understanding teachers this school year. Meg has always been on the honor roll, her grades are very important to her. Unfortunately, since starting the Keppra, she has had tons of trouble with her memory. Her teachers are helping her with taking notes, letting her take her tests in another room so she can concentrate better, and keeping me posted of any problems they see. Her soccer coach (who is also her english teacher) was great thru soccer season last fall. Meg didnt get to play much but the coach did play her when she was feeling up to it. Meg is also in band (coronet) and her band director says that she is one of the most promising students she has had in several years. But since starting with the Keppra, Meg has had trouble memorizing music, cant remember scales she learned in 5th and 6th grade. We are hoping that with the change in medication this will go away. Meg was diagnosed with Juvenile Myoclonic Epilepsy in July of 2001. She has had only 5 grand mal seizures in that time. The only other sign of E that she had was jerking in her arms occassionally the year prior to diagnosis. She too has talked to each of her teachers about her condition and keeps them all posted on a regular basis of any and all changes. Her neurologist (who is an epileptologist (sp?)) says that if she stays seizure free she will be able to get her driving permit in April. Hope all goes in your daughter's favor and she can have the surgery. Sounds like things look promising.
Wishing you and your daughter the best,
Terri

Hi Vicki,

Megan is 15 and a freshman in high school. Yes, she has been lucky to be able to continue all the activities she enjoys and has had some very understanding teachers this school year. Meg has always been on the honor roll, her grades are very important to her. Unfortunately, since starting the Keppra, she has had tons of trouble with her memory. Her teachers are helping her with taking notes, letting her take her tests in another room so she can concentrate better, and keeping me posted of any problems they see. Her soccer coach (who is also her english teacher) was great thru soccer season last fall. Meg didnt get to play much but the coach did play her when she was feeling up to it. Meg is also in band (coronet) and her band director says that she is one of the most promising students she has had in several years. But since starting with the Keppra, Meg has had trouble memorizing music, cant remember scales she learned in 5th and 6th grade. We are hoping that with the change in medication this will go away. Meg was diagnosed with Juvenile Myoclonic Epilepsy in July of 2001. She has had only 5 grand mal seizures in that time. The only other sign of E that she had was jerking in her arms occassionally the year prior to diagnosis. She too has talked to each of her teachers about her condition and keeps them all posted on a regular basis of any and all changes. Her neurologist (who is an epileptologist (sp?)) says that if she stays seizure free she will be able to get her driving permit in April. Hope all goes in your daughter's favor and she can have the surgery. Sounds like things look promising.
Wishing you and your daughter the best,
Terri

Hi Terri,

Thanks for telling me about your daughter. How has she handled the Epilepsy emotionally? It has been a part of our lives for so long, we don't know any different. Is it likely your daughter will outgrow it? I am not familiar with the type Megan has. Is it at all related to her menstrual cycle? That is when Katie's seizures became "really" uncontrolled. She was on Tegretol for almost 12 years before it just stopped working. The Epileptologist thinks Katie may have a gene that causes her to become 'immune' to meds after awhile. Immune isn't the right word, but something like that. So, that means if she is not able to have surgery, she will be bouncing around trying all different meds for the rest of her life. And that is just TOO darn tiring! Trying to figure what works and what doesn't. We also worry about college and driving. We ARE blessed that Katie has not suffered any drastic cognative issues. I can understand your daughter must be frustrated because of the meds. Some people are very sensitive to meds, while others handle them fine. You see that by people's comments here. Katie has been on Keppra for 2 1/2 years now and Lamictal 4 months. She had a TERRIBLE time with Depakote. She was 14 and went from 110lbs to 88lbs in 4 months and lost a lot of hair (all over her body). You could see her scalp through her dark brown hair. Nothing I care to remember. Nice to hear that Megan has wonderful teachers that are supportive of her, that must help her greatly. It is also nice to hear you are seeing an Epi. They have extra and specific knowledge regarding E, meds, tests, etc. Tell Megan to do her best with her coronet. Not many girls play coronet, good for her! Our son Andrew plays sax. Thanks again for the reply and my best to Megan and your family...and I appreciate your kind thoughts for us as well.

Vicki
mom of Katie, the most courageous young lady I know