Hi Peterpan,

I was cold all the time when I was on keppra and the seizures increased a lot more. I don't like how your daughters post seizure feeling lasted for 4 hrs. this reminds me of how I went into status epilepticus seizure from the drug. I would be out of it for 40 min. or longer. I'm no Dr. but if I were you I would tell your daughters neurologist to lower the drug level or get her off the keppra. There's been to many reports that have been put out by the FDA drugwatch on how keppra can make a persons seizures increase and I certainly wouldn't want that to happen to your daughter or anyone else. I wish you and your daughter only the best of luck and May God Bless the both of You!

Sue

Time will tell.
 

keppra continued
 

Darlene, Thanks for the reply. I appreciate a variety of opinion and personal experiences.

Porkette, Thank you again for your advice.

Are there any other of you with similar Keppra experiences /advice? I am getting mixed results on the need to get off Keppra and others , including the neurologist who say we need to stick with it and wait to get up to the
"therapeutic dose" and then back down???? This week at school will be a good test to see if it is improving, since nearly all of my daughter's seizures hapend at school, or on a school day???? My wife is convinced that it is becasue we started using this ridiculously loud new alarm clock to wake her up in the morning. Maybe disrupting her REM sleep at 5:30am is creating a delayed trigger?? Thanks again for the help. Peterpan

Hi Peterpan,

I find it strange why the neuro would want your daughter on the theraputic dose of keppra and then back it down. If the drug is working at the correct dosage the neuro shouldn't back down the dosage because this can lead to withdraw sz. from lowering the drug level. I could be wrong but I ask myself if the keppra is increasing your daughters sz. just like it did with me. Also if you haven't started keeping a journal of your daughter sz. be sure to start one and write down each time she has a sz. put the time down that the sz. happens along with a description by doing this you can sometimes see a pattern in the sz. and what time of day/night or what days of the month the sz. will happen the most. I often have sz. early in the morning when I first get up and am getting ready for work.
It's up to you but you might want to set up an appt. for your daughter to see an Epileptologist since she's having a hard time with her sz. Just go to a University Hospital where they have a Epilepsy Center and you can find a Epileptolgist. By doing this you are working with a Dr. who knows much more about epilepsy and will have your daughter on a lower dosage of AED's (sz. meds) I wish you and your daughter only the best May God Bless You Both!

Sue

Seizure log
 

Sue, good advice. Yes, the neurologist was hoping we could decrease medications only after control had been reached and only very slowly to see if she had grown out of them in the distant future. (hoping that she fits in the 70% of people who grow out of seizures?)

As for a log, yes, we are keeping a log on my daughter's seizures. We are seeing a pattern of seizures being more common at school vs. home, and usually when she has lower blood sugar. (ie if she forgets to have a snack or after the insulin crash from eating too much sugar). We are adjusting her diet accordingly. She wanted to skip school rather than skipping candy but that is a teenagers treatment plan. Have a great Christmas.

Any thoughts/evidence/experience out there on seizure frequency and low blood sugar?

This is my first post as Friedbrain, but I was on here about 8 ys ago when my brain first blew up (can't remember my old name/pw), and it feels like coming home. Such a great group, and much of what I know, I learned here!

So....what I have to say....a lot of it is not my own wisdom..... If you read here enough, I'm sure you'll see that almost all AEDs have a mix of side effects, so it ends up being what gives the best control with the least amt (or tolerable) side effects, and sometimes it takes a cocktail. Keppra was my second AED to try, and it worked to stop the grandmal seizures (where I was unconscious). I eventually had breakthrough partials (stress of graduate school kept wearing down control of my seizures.... :( ) and ended up on lyrica. I am 44, average weight, and on a pretty high dose (1500mg morning and 1500mg night).

I am fine on it now, but it's nickname on this board back then was "kepprage" or "keppratude" because it can cause mood swings. When I first went on it, I was also on an anti-anxiety because of a misdiagnosis the first time I was in the ER. I decided to go off the anti-anxiety because I had been taking it for the wrong reason....and ended up like a puddle on the floor. Everything set me off and I was angry or felt like the world was ending with stress. Went back ON an anti-anxiety/depressant and was fine again. So...I don't know if that's how most cope with keppra, but it worked for me. After 6 ys of that, I decided to go off the anti-depressant and have been fine. Maybe my brain adjusted, or it's that I no longer have the stress of graduate school....

Oh, what I wanted to add is that, yes, I'm HYPER-sensitive to sugar and insulin. I am on a self-modified diabetes diet in that I don't eat candy/cookies and REALLY limit simple carbs; I eat carbs in combo with proteins and fats, and I eat multiple small meals. Feel MUCH better when I stay on that wagon! I really believe that my seizure threshold is lowered by too much sugar (I had status epilepticus after cookies right before xmas!) You can get her these low carb chocolate bars (my fav-zone perfect bars). They are incredibly balanced: even trying, I cannot get a sugar high from it. (But they taste great!)

And one more thing (can you tell I miss this group!).....with that calendar, track her menstrual cycles. Mine were always right before my period-called catamenial epilepsy. I have since tracked different symptoms/problems to different parts of my cycle.

Keppra response update
 

Hi all, just wanted to let you know that we decided to continue as advised and keep the course with the Keppra. My daughter is now taking 750mg in the morning and 750mg at night. I am happy to say she has not had any "episodes" aka: seizures for over three weeks now. Her moods seem "normal" for her and for a teenage girl. We are watching closely but the medication seems to be doing the trick even if she eats too much sugar, smells triggering odors, or stays up all night on new's year eve. By the way, we have noticed that when we changed pharmacies the second "generic" version of Keppra from Costco ($40.00/100 tablets) triggered slight positional vertigo where the original "generic Keppra" ($100.00) did not? Anyway, we are encouraged but are eager for the day she grows out of her seizures and can stop taking any medication. Thanks for all the advise and suggestions. :)

Hello peterpan; I am new here also. I've had epilepsy for almost 45 years, starting when I was 10 years old. I have tried almost every med on the market, but the only one that has helped is Keppra. It controls my tonic-clonic seizures, but not the simple and complex partial. I have tried the vagal nerve stimulator, have had a resection, and tried again in November; but they found the area was too large to remove. I wish I could help you more, because I know what your daughter is going through. I live in NC. I had both surgeries at the University of Virginia. Dr. Nathan Fountain was my neurologist. Wake Forest University is also a very good hospital (level 4). I took part in clinical trials there back in the 1980's.