I am on Keppra 1250 mg twice a day and still near my cycle, I have seizure symptoms such as Twitching in the eyes, numbness in the face and stare offs!
I know the medicine had a side effect of making me sleepy, but there are some days where I feel like I can’t even get out of bed! As if my eyes have been supper glued and any energy has been sucked out of my body at night!?!?!?!?
I have not been very active since the seizures started a few months ago. I used to volunteer at the school two or three times a week, volunteer once a week teaching 4th and 5th graders at the church, coach soccer on Sat. and take care of all my duties at home, kids, cleaning, cooking, shopping and bills.
Now, I go to the grocery store to pick up just a few things and I am exhausted. Cleaning off the counters and going through the kids school work is enough for me to NEED to sit down.
Forget about any kids of exercise, I went on a 2 mile walk as a fund raiser for Childhood food allergies, and collapsed when I got home.
I have been rid of my AVM since 2000 but my seizures are new. Could this be the new way of life? or is this the medicine? I have tried several meds since Feb. and this is the only one that gives me one side effect (sleepiness) but I have good days. So do you think its the medication or the seizure activity? Is this how everyone else lives?
I am having a hard time explaining to my husband and friends, I feel like they think I am lazy! Sitting around resting is not my personality.
If you have any words of wisdom besides constantly wearing a caffine patch, I would appreciate it!
I take 1500 mg 2 times a day…and that was gradually increased over 2 years. At first I had a really hard time with waking up and staying awake. And I noticed that sometimes I still have a difficult time with it. I honestly think it isn’t from my dose of keppra, but from the surgery its self. The only side effect that I have really noticed from the keppra is that my hair is constantly falling out and I’m going bald. lol. Of course everyone is different and the keppra could be causing your sleepiness especially if you recently started this dosage. If that is the only side effect you are having then maybe with time it will get easier as your body adjusts to the dose. I have seizures pretty frequent (couple times a week) and that also makes me very sleepy. With just about any kind of seizure meds there is a side effect of sleepiness…so I would suggest to try and just wait it out. I was pretty active before both of my surgeries in 2007 and since then it has been pretty hard adjusting and it took a while for my family to understand. Just remember that you know what you can handle and if your too tired to do something then just dont do it. Hey we have a reason ya know. I have a shirt that I wear sometimes around a certain relative that says “I have an excuse…and its something called having brain surgery!” A relative of mine just wouldn’t ease up on me and kept pushing me and for a while I convinced myself she was right. But then I noticed my seizures were more frequent and I just was feeling so much worse. I hope that I helped you in some kind of way. lol…even if it is just knowing you are not alone. Have a MERRY CHRISTMAS!!!
Bonnie Lass-Have you spoken to your neuro and/or family physician?? When exactly was your last mri, mra or angio? Questions I have-answers I don’t. Meds and siezures can both be culprits, WHAT has changed in and around you of late?? What is cause of seizures?? Levels of meds can be tricky and the body needs adjustment time…and I am concerned for/about you. Please inform me what your physician has told you-or when you will call them. I wish you the best days and hope you can enjoy the “crazy” holidays.
You and yours are always in my prayers. May God continue to guide, guard and hold you(all) in the palm of His hand. HUGS all round…
First, sz’rs can begin years after brain damage. What type of sz’rs do you have & what happened to give the neuro. to put you on 2500mg keppra a day? 3000mg’s is the max. ,but some of us complicated folks take more. (3500mg for now). Keppra does cause sleep. Some have gotten off because of that. I was tired & slept all day like you are @ 2000mg’s, but since it was great on controlling the sz’rs I stopped my Dilantin & jacked up to 3000mg’s. You talk about wired. Neuro. wasn’t happy to hear I did that w/o his opinion, (I didn’t want it) but I was a happy camper.
Different drugs for different sz’rs. Do you know what type you have? The twitching & staring sound like minor sz activity.
If you check on http://brain.hastypastry.net just go to the epilepsy forum & you’ll hear tones of stuff on the different sz drugs, side effects & who took what, why & it goes on & on ,
I started the Keppra in Feb and worked my way up to this dose, so I would think that the side effects would be minimal.
I had my surgery 8 years ago, and just started having seizures in Feb. First seizure was a partial seizure ( twitching on one side and loss of cons.) then in Aug I had several more. Since the medication has been increased, I have not had any more seizures that involve the entire body, more just my vision, eyes and face. sometimes I feel shakey and have some minor treamors. When I am feeling these symtpoms is when I am feeling the most exhausted or if I try to have a normal life. Christmas was a huge wearing out experience.
I appreciate hearing your expereinces, I think it all helps to know what others are going through!
I haven’t been to the doctor since Oct, money is tight. I am thinking that I need to move up in doseage since I am still having twitching and facial numbness, but am afraid to say anything because if it is the meds that are making me so tired, then I will just be more tired. But if it is the minor seizure activity that is wearing me out then the meds might help. UGH! I used to be such an active person and now I feel like I can’t do anything. The slightest thing wears me out to no end and then I am looked at like I am lazy! The doctor just thinks that the scare tissue from the surgery is pressing on the brain causing these seizures. I just want to feel right again!
Thank you for your resonse!
Yes, my surgery was over 8 years ago and the all the sudden I had a partial seizue in Feb. Which I was started on 500 mg Keppra twice a day. They I was having slight tremors but no big deal. I had a lot of damage to my house during Tropical Storm Fay which caused a lot of stress and a lot more seizures Focal/Partial. Then the doctor kept increasing the dose. I have been on the 1250 mg twice daily for some time now, still have tremors, eye twitching and some visual changes any time I do activity (wrapping presents, shopping, taking care of kids- nothing major). Then there are days that I feel like my eyes have super glue on them, I just can’t seem to get out of bed and if I do I am like a limp noodle. So I just don’t know if it is from the meds, or slight seizure activity, even though they are not full seizures I wonder if they are still doing something to my brain. I used to be a real active person, playes soccer, softball, was always doing something social…now I am the lump on a log at a party or if I try to have ful and play a board game or raise my energy, I pay for it the next day. Is this what my life has come to???
My friends and even my husband who new me pre-AVM think that there is always something wrong, because I am not the olds me and they can’t see my issues. But if I had a bandage around my head 24/7 or limped or slurred my words, they would be reminded that I have issues.
I have tried lots of meds, and this is the one with the least amount of side effects. Maybe I need to go up in dose to stop the mo=inor things and maybe the drop dead feeling will go away!?!?
thanks for the website, I will check it out. I am always looking for new info to read.
Thank you for your response.
That sounds like me, I am not happy at all. But I wonder if it is the medication or that I have had to totally stop doing everything that made me happy.
I am afraid to be a geinie pig with meds since I have such bad reactions with so many others. Keppra doesn’t make my face numb, or make me lose my taste buds, or break out in a rash, so far just sleepy and overly sleepy at times. But everything I have read says that seizures knock you down, and when I was having larger ones, I would be knocked down for days. Now that I am only having partial seizures or Focal ones (they all call them different) I am wondergin if it is them that are making me knocked out at times and not the meds. Since there are days that I am fine, I mean I can’t run a marathon but I can function.
I tell people, but some people are not believers becauase they can’t see the cause with their own eyes. Even the people who went through the surgery with me. They all think its over, so did I. But now with the new life of seizures comes more judgements and more things to get used to. Heck, I have been partially blind for 8 years and people still forget!
Thank you for the info, I love hearing other people’s stories.
Hi Bonnie, i am on 2000mg keppra, 600 dilantin and 200 lamictal per day, the keppra was not good to me when i first started it, i was tired and depressed, i wasn’t a nice person to be around, and i still had partial seizures while i was on it and dilantin, so doctors not wanting to increase my keppra and risk adding to the depression have decided to add lamictal, from febuary i will be weaning off the keppra, if it is having to much of an effect on you, it is really important to let your doctor know, it might not be the right medication for you, every one is different and has different side effects to the same medication, when i have seizures, it takes a lot out of me as well, and if people are giving you a hard time, tell them why, it is the medication and then tell them to pull their head in and try to understand what you are going through, because they really have no idea Bonnie
I wonder if you are on the new generic Keppra. The differance BTW the original & generic could be 30%, give or take a bit. It may be that if just one sz drug won’t work, another may have to be added. Scar tissue is my problem too. I’ve always been a problem child. The “easiest” way would be to remove the tissue. On hastypastry look for Porkette, she’s very knowledgeable.
As for the bunch of drugs, try this:
Jerod is a guru.
Hope that helps!
Jerod? Is that your name?
Well, now that you mention it, since they do not make Keppra in a 1250 mg I have to take a 1000mg pill and 250 mg pill (two copays) and the last time I went to pick it up the 250 mg was the generic…I wonder if this is the problem. I know that I have been wearing myself thin too, but seizure activity every day??? I will check out that website you gave me, thanks! How long ago was your surgery, sorry I don’t remember…I have brain damage! Hee hee!
Are you considering getting your scar tissue removed? Are you worried that if you do that more symptoms will start? My life has dramatically changed since the excessive seizures that started in Aug!
Thanks and God bless,