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Keppra and me

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Posted 6/2/2007 1:32 AM (GMT 0)

Some of you probably remember what a hard time I had about a month ago when I had to increase my Keppra by 500 mg. per day.  I have to do it again, starting tonight by another 500 mg.  I will now be taking a total of 2500 mg. per day.  If it is like the last time, it is going to knock me off my feet for a couple of weeks.  I just have to remember that I got through it before.  I've been having a lot more seizures recently and not sleeping very much at all, which we all know isn't good.  I feel like I have been seizing myself awake.  Does that make sense to anyone?

Carla

Posted 6/2/2007 9:48 AM (GMT 0)
Hiya Carla,

I understand what you mean by seizing yourself awake. (I think) If I have seizures during the night, I very often will wake up as a result and it can be hard for me to get back to sleep. (Although if its a big one, I just zone out! lol) As for the increase in dosage, that maybe the answer but you might also want to consider whether Keppra is the drug for you. As far as I am aware (And remember Im NOT a professional) the max dosage of Keppra (Generally) is 3000mg / Daily. So there is certainly room to increase it and if you can get the drug increase to work for you that would be great.

We are all here for you Carla, and you know where to find my email if you want me.

Best Wishes and Good Luck

Darren

Posted 6/5/2007 1:34 AM (GMT 0)

Hi Carla,

My son also takes keppra - 2000 mg a day and he also takes 2 other meds - 600 mg of zonegran and 500 mg of lamictal.  When he first started on all these meds he had to take a 3 month medical leave of absence from his job.  Luckily he works at a place that by law has to alllow him the leave.  During this time he was extremely tired.  He wanted to sleep late in the morning and take a long afternoon nap.  The keppra also made him VERY irritable.  That was hard to deal with as I was always having to take him someplace or find something to entertain him or just get him out of the house so much.  Eventually these symptoms went away.  His seizures had gotten way out of control - he was having grand mal and absence seizures all the time.  The meds have worked great and he is now seizure free 1 1/2 years. Can you ask your DR. if there is another med that can be combined with the keppra?  My son's neurologist said the keppra was a partial control med and that is why he takes the others.  I wish you luck - things can and do get better.

Posted 6/5/2007 1:57 AM (GMT 0)
Hi Carla,

I have to take Keppra- 3000 mg a day and Topamax- 500 mg and I still having seizures every mth about 6-8 of them, not sleeping good, irritable, not eating well, numbness in hands and feet, but the dr. say that this is about the only thing they can try give me. If I understand you on seizing while awake with me it feels like a dream ( sounds crazy lol) but i feel the seizure aura then i fall into deep sleep and awake with a bad headache (if make any sence)the last result for me is surgury which is in june or july. I hope things will get better for you and your in my prayer good luck.
Posted 6/5/2007 5:30 AM (GMT 0)

Aurora and Brain3,

I also take Topamax along with the Keppra.  I did try Lamictal, but wasn't able to tolerate it.  I was just diagnosed last August and still trying to get the seizures under control.  I do have a lot of trouble sleeping, but when I do get to sleep, I don't want to get up.  When I did the four day EEG they only captured myoclonic seizures, but we now know that I am having several different types of seizures.  I'm going back down to Vanderbilt to see my neurologist on June 26th to sit down and talk with him to see what we need to do.  I hate hospitals, but if he thinks we need to repeat the four day EEG, I'll do it.  My daughters and friends are telling me that I am not having a good quality of life and they are right.  When I keep having seizures, I can't spend fun time with my grandchildren.  So, I guess it may be back to the hospital for me.

Aurora, I am glad to hear your son is doing better.

Brain 3, please keep us posted on your surgery.  That sounds like a big step.  Please know you are in my prayers.

Thanks for all the support!

Carla

Posted 6/12/2007 3:37 AM (GMT 0)

Hey Gracie's Mom,

I am sorry to hear that Gracie is having problems again.  I would say they have started her on a lower dose of Keppra because of her small size.  Her age may enter into it also. They will probably gradually increase her dosage.  I am glad to hear that it is working for her, but hate to hear that she's feeling so bad.  I guess it's better to be happening now instead of during the school year.

My grandkids are great.  I will send you some pictures soon.  I haven't been able to really spend any time with them recently while I've been trying to adjust to the recent increase in the Keppra.  I'm still just wiped out.  It usually takes me a couple of weeks to get on the other side of it, but I know I will get there.

Please let Gracie know she is in my prayers.  She is so young to be going through so much.  I wish I could take it for her.

Take care!

Carla

Posted 6/12/2007 8:32 AM (GMT 0)
Hi Gracies Mom,

Its good to hear that your daughter is finding the meds helpful. I know people who spend years trying different anti-convulsants looking for one that works for them. (And lets face it, there are plenty of them out there!) With regards to your question about a drug working and then not working... This is very possible. Especially in teenagers. Because their bodies are changing and developing, a drug that used to worked for them may stop being effective. Sometimes it can be as simple as the dose. I was started on 100mg Carbamazipine when I was first diagnosed (15) and nobody thought to change the dose until I was about 19.

Wishing you well

Darren

 

Posted 6/17/2007 1:30 PM (GMT 0)
 Hi:

I am on Keppra I want to wish you the best smurf

Posted 6/19/2007 3:47 PM (GMT 0)
The low dosage did start to cause me a problem as I got older because I simply did not have enough Carbamazipine in my system to prevent the seizures. So as I grew, I had more seizures. Once someone clicked, it was fine.

Thank you for your kind words! I like to think that I am a help to others. Thats why I joined as a moderator; so that I could help people. I was spending the time on the internet anyway, I figured it would be a good idea to do something useful with it!

Warm wishes to all

Darren

Posted 6/19/2007 11:17 PM (GMT 0)
Hum ... I have been on Keppra for about ....... 4 or 5 years now I suppose.

I at first had great success with it (other than losing 40lbs the first month on it, then I started to remind myself to eat). My epilepsy was never extremely severe, tonic clonics twice every 6 months or so and simple partials about 15 a day or so (just had one a second ago). I never fell from them and could usually kinda control my body but just felt like I was more in a movie so they always said it was side effects from pills, new doc said it was simple partials, prescribed me some depakote and now they happen like once a week.


Anyways, back to the point. My seizures have cut down to about two a year or so, went about 3 years without one and then I decided to quit taking my meds and now I am having one every 3 months or so. Has anyone else seen anything like this happen? It is very weird how the meds was working great and then just suddenly stopped. Everytime after I have a seizure they tell me my levels are low but I know I have been taking them. The doctor is hesitant to increase the dosage (and so is my pocket book). Anyone have any experiences like this on Keppra too?


As for the pills I have taken, I have taken most all of the carbamazapenes, dilantin, depakote, keppra and a few others.
Posted 6/20/2007 4:08 AM (GMT 0)
Paul, I was just diagnosed last August, so I really don't have any advice for you.

Gracie's Mom, I am thrilled to hear that Gracie is still making progress! That is wonderful news. You are exactly right about Darren also. What I want to know is how did he get so smart at such a young age?

Darren, thanks again for all you do for us!

Carla
Posted 6/20/2007 6:03 AM (GMT 0)
*Takes a bow* yeah   lol

"What I want to know is how did he get so smart at such a young age?" --> Answer: A lot of experience and reading textbooks! When I was first diagnosed, I spent a lot of time reading about epilepsy and making sure I understood exactly when was going on. My mum also has epilepsy and I am a psychology student. When you study the brain at University you are bound to come across epilepsy at some point! lol

As long as you guys think I am doing a good job, thats the main thing.

Warm wishes to all!!!

Darren

(Who's head is now so big it wont fit through the door!)

Posted 6/22/2007 2:54 AM (GMT 0)
  

  another day,

                  There are other meds.out there if Keppra isn't or doesn't work for you.I've had seizures all my life,been on probably every medication out there,and today I am taken 1800mg Neurontin,1200mg Dilantin,1000mg Zonegran,and 2.5mg Clonazapam a day.Now granted I have had my right temproal lobe removed back in 2000,and I had a VNS put in about 3 years ago and with the surgery's and my med's today, I am almost seizure free.So don't give up.Keep trying different meds until you find the right combination.

                                                          Good luck,

                                                                      Michael

Posted 6/22/2007 4:55 AM (GMT 0)

Michael,

Thanks for your support.  I'm not giving up.  I'm going back to see the neurologist next week.  I know it takes time to get the seizures under control.  I guess I just want it to happen a little faster than it is.  I was just diagnosed last August.  I'm guessing that's not that long?

Carla

Posted 7/12/2007 5:09 PM (GMT 0)
thanks another day
Posted 12/29/2007 11:57 AM (GMT 0)
Hi Carla, my epileptologist took me off keppra due to terrible mood swings. I just wasn't myself. I've never felt so bad except during a seizure in my life. I turned into someone that I'm not. I was mean and I couldn't control it. Everything bothered me. Every sound, the phone, the dogs, if the TV was a little louder. Plus I became extremely impatient with everything. He replaced it with Lamictal and have had no problems now. Hope this helps.
Posted 12/29/2007 11:15 PM (GMT 0)

Baci,

Thanks for your reply.  I went off the Keppra for several months and tried other medications.  I have been back on Keppra for some time now and have been tolerating it well along with Topamax and Klonipin.  It has only been about 16 months since I was diagnosed and I understand it is a learning process.

Take care!

Carla

Posted 1/7/2008 9:19 PM (GMT 0)
My sister had a single seizure (we don't know what triggered it, although she was eating at the time, she definately choked, we don't know if it was before or during the seizure though) and now takes Keppra.

Due to that, she can't take Ritalin, which she needs to focus in school.

She's been having lots of trouble focusing in school and has been having quite a few mood swings recently (although she is 12, so I guess that would be normal for her age).

Would taking Keppra for a long time make her body dependent? We can't test her to see if her chemical levels are back to normal while she is on Keppra, and my mom is reluctant to have her ease off the Keppra even if she would be monitored. So under the effects of Keppra is there any way to tell if she is progressing?
Posted 1/13/2008 2:43 AM (GMT 0)

Ender,

I want to welcome you to HealingWell.  This is a question I would be afraid to even take a guess at answering.  You really need to talk to her doctors.  Please continue to post here and let us know what you find out.  We are definitely here to support your sister and the entire family.

Take care!

Carla

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