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Does ANYONE like being on Keppra?

Okay, so I know no one really likes being on any medication, but I am just wondering, does anyone LIKE Keppra?

I hate Keppra. I hate the way it makes me feel. I'm always tired and grouchy and fidgety. I can't see straight most of the time and my already short-fuse is way way shorter.

Has anyone been on Keppra and NOT had bad side effects?

Because for the number of people, it seems like most people I've talked to DON'T like it.

Comments

The Keppra seems to control the seizures but the side effects are the killers. Seems like

everyday I wake up with a headache or I'll have one at work or when I get home and in

the past 3 years I've had 4 bouts with kidney stones. The first 3 I passed by myself but

this last one, just last month I had to be hospitalized for. My doctor told me that Keppra

caused kidney stones when I started on them and to drink alot of water which I do but

that doesn't seem to help any.    

buckeyedude

Hey there!

Maybe this will offer a spark of Hope...

My hubby has been on Keppra for over a year now and hes doing actually very well on it (maybe even longer cant remember when we had to do last med change). I CRINGED when the Doc changed him from Trileptal to the Keppra after he was having break thru seizures on the highest doeses of Trileptal. I was petrified of Keppra becuase its deemed the EVIL DRUG.

Anyway, not for him...hes doing excellent on it and hes fine mood wise too. It was only when they added Zonagran to the Keppra he was EVIL and NASTY and it was horrible. He was the most miserable person to ever live with. We took him off Zonagran and up'ed the Keppra to prevent the sieuzre he was having (break thrus) and poof back to normal in a week or so after the Zonagran was taken away. Hes also on Lexapro which is an anti-depressant. So far, hes happy all the time, never really in a bad mood and doing extremely well on the Keppra. Alot of the other meds he was tired all the time. He doesnt seem to be so bad on the Keppra. I know Doc wants to keep him on the Lexapro becuase it is a mood stabilizer so maybe thast why hes doing so well. Hes on a pretty high dose of Keppra too (I think 1750mg a day plus 10mg lexapro).

I hope that sheds some light on your question and brings a little hope.

Take care!

-Diane

I was put on keppra and had major side effects.After a few days I felt a seizure coming on.During that seizure I was partly concious,my arms and legs were like a ragdoll,I rocked back and forth hitting the floor and when trying to get to my bed hit a dresser and broke part off,slurred speach then I Couldnt speakthen I became stiff and couldnt move at all no matter how hard I tried basically paralyzed from my neck down.couldn't see straight,had no sense of balance,couldnt eat solid foods or even feed myself.My parents did not let me do anything for myself or get out of bed without one of them until they were sure I was fine again and had me stop taking it right away.That happened 9-15-01 I remember all I could watch was wtc coverage.Ever since then I'm weary of trying new meds.My parents thought I had a stroke and seizure at the same time.

I had a non-epileptic seizure brought on by sleep apnea. I had symptoms of sleep walking, talking and sleep apnea. Once I started taking Keppra about 11 months now, at first I was feeling anxious, cranky, nervous, and irritable but that was because of the dosage. The doctor lowered my dosage and my sleep walking and talking stopped. I take 1 pill at night before I go to sleep and I have never felt better.

Hate it!  Controls the seizures but the side effects aren't worth it!

Compared to that Tegretol I was on for over 24 years I love this Keppra. I started taking Keppra in late August and slowly tapered off the Tegretol. Being on Tegretol for over half my life I tapered off it twice as slow as my doctor recommended. My seizures were under control with Tegretol so I was worried about having seizures again when I stopped the Tegretol. I had to come off Tegretol because it gave me low bone density. Like the other old AEDs it blocks the absorbtion of calcium. It also made my blood count lower than normal. Being off Tegretol for the last 4 weeks my blood count is now normal. My metabolism and energy level have increased with this higher blood count. I ran a 5K race Thanksgiving morning in 19:04. The fastest 5K I ran while on Tegretol was 22:41.

Slight drowsiness was the only side effect I got when I first started Keppra. Now that I've adapted to taking 1500mg of Keppra per day, and that I'm off Tegretol, I no longer feel drowsy. 

I am very grateful I haven't had a seizure yet while taking Keppra alone.

Drugs work differently for everyone so keep trying other AEDs if Keppra gives you too many side effects.

I was on Tegretol as a test patient a long time ago!  I also love to run too.  I started to have problems about 5 years ago w./ sodium and calcium problems.  I slipped while running down a hill and broke my right fibula and tibia.  The ortho. said I had Osteoporosis. I take a medication for the Osteoporosis.  He said you are young to have it and you are athletic.  He did a study on the rest of my body and I had other parts of my body that were weak too.  I am taking calcium w/ vit. D and Magesium too.   I also started not being able to clot fast enough.  I told the Epileptologist.  We need to change.  Tegretol is a great drug.  He put me on Keppra.  It was like sugar water.  He put me on 3750 mg along w./ Zonegran. 300 mg.  I started to go back running  5 K and I was fine but he noted I was seizing in his office.  He said I want to put you in a study similar to Keppra it's Breveracetam.  I'm on the open study.  I suddenly cannot run  it has affecting my muscles.  He said that should go away.  I can only go a mile.  I have frozen shoulder on both shoulders.  My ortho. said you are one of my most healthiest patients.  Brother!  The meds. have decreased my seizures.  I will wait one more month.  I use the treadmill.  He gave me shots for the shoulders which I have been exercising and he said I was like any other athlete trying to fix it myself.  I ice it or heat when I have pain.   Thanks for letting me write this. 

 

discussion/964617 near bottom of forum page 11/29/2008 6:53 PM PST

caregivers_need_hugs2

Diane,

Sorry, but the website is posting my reply everywhere but where I want it!

Yes, it gives me a spark of hope that it isn't the Keppra that is the EVIL DRUG, but
maybe the interaction with other medicines that makes Keppra so emotionally
aggravating.

I hope Keppra turns out to be a "magic bullet" for me as I stop taking Dilantin over
osteoporosis, and return to Keppra for its fast acting effects whenever I have warning
of a gran mal.

Dilantin and Keppra mixes made me irritable to apathetic! ("Growly snapping!" to "What's
the use of anything?").

Since I haven't had any luck with AEDs controlling my partial seizures, I'm going to
just accept them for now and focus on alleviating my gran mals as much as possible
with Keppra, and see if I can balance everything for the best with minimal side-effects.

With all the doom and gloom otherwise reported about Keppra, Thanks for your encouraging
report on Keppra having a ray of bright light!

**

**

Diane,

**

Hi, Have to agree with you there, I hate Keppra! I was only on it for about 3 or 4 weeks & couldn't stand it any longer. I was permanently exhausted (falling asleep at my desk at work), no energy, bad headaches, feeling nauseus.. & that was on a really small dose! Anyway, I'm glad you said that, cos it seems that the people I've talked to seem to really like it & that its pretty successful. how long have you been on it now..is it working so far?
Ruth

Thank-you!!
I've been going back and forth about getting the heck off that drug.
On one side it's success rate is better than most.
On the other, I've been on 500mg twice a day for about 2 months now and the side effects have been horrible
A month into it, I had a brutal day at work, came home was doing dishes looked at a knife and started to cry thinking the world would be better off with out me then later on I was screaming at my boyfriend for no reason.
Topomax is still in me until I adjust to this & yet I still get headaches - dunno what's up with that.
Some days, focus is out the window. Numbers on a page look criss-crossed, totally wrong when your a lead gen rep & you make phone calls for a living!
I don't think I've really heard much good about the drug either, but people keep getting put on it, and my neuro will probably say the same thing he did when I was on Topomax & hated the fact that I felt sick everytime I ate (for almost a year)....tough it out, it will get better, you're having less seizures be happy.
Look how that turned out - 3 yrs later I'm off Topomax on to Keppra.
I think my question is does anyone else ever feel like they happen to be a walking lab experiment for their neurologist?
Sorry for the slight rage in me, can you tell life was just "happy cheery" today? ya, I have a sarcastic side :)
Erin

The thing is, I'm NOT having less seizures. I'm having just as many or more.

And I have another headache. I'm miserable. =( I remember when I used to be the chipper bright spot in everyone's day. I want the version of me back!

Hi,

Keppra didn't work for me. My seizures increased, so I switched back to phenobarbital. I, thankfully, didn't have major side effects. I just wasn't pleased with the increased seizure activity. Best of luck to you, I hope they find the right med and dosage soon!

Heather :)

Thank-you so much as a mom of a 3 year old I thought that I was just reading too much into her behavior changes and increased seizure activity because I knew that we were changing meds....but reading what you all have to say about how you feel being on Keppra I feel bad that I am making my daughter feel this way by giving her this medicine.

I think that we are going to have to find a different med for her I hope that you find something else that works for you...My daughter is so fussy and whinning and tired all the time and I guess I would be to I just did not realize how much it was because of the medicine..Thank-you I am really sorry that you have felt so bad good luck to you and I am giving you a hug from me and Emily Klair...

Emily Klair's mom...Kari

Hi. I had my first seizure in 1985. Since then I have had maybe a dozen more, but all but that first one and the most recent have been while I am sleeping. I also have had extremely long periods seizure free (8-9 years). Since the recent one during my waking hours was a bit frightening for the family, I was convinced to return to the neurologist and will repeat EEG, MRI, etc., that were inconclusive in the past. He immediately, and before these tests have even been done, gave me samples of Keppra and wants me to start taking them.
I am extremely reluctant to do so and more reluctant after reading these comments.
I am also worried about how screwed up I'll get and how long it would take to get 'unscrewed' if we opt to switch meds....

My husband went looking up some information on Keppra and how it is absorbed and has an interesting theory.

He learned that the half life of Keppra is 6-8 hours. I am currently taking my medication every 12 hours: 7am, 7pm. 500mg in the morning and 1000mg in the evening.

He thinks (though he's not a doctor and doesn't actually know) that given the half-life of the med, my body is absorbing it unevenly giving me peaks and valleys. My valley would be from about 1pm until 7pm, which oddly enough is when I experience the majority of my seizures.

Since the doctor has allowed me to increase my dosage on my own, my husband and I have decided together to modify the timing of when I take it. Instead of taking 500 and 1000, I am going to take it 500/500/500 at 7am, 3pm, and 11pm. I'll let you know if that changes anything in me.

If not, I am not going to go up to 2000mg, I am going to call my neuro and ask for something else. I think my daily headaches are also related to the medication wearing off.

Hiya fzMousie

Here is the info on Keppra from epilepsy.com

"To avoid unwanted side effects, the doctor will prescribe a low dose to start and increase it gradually. Young adults usually start by taking 500 milligrams (mg) twice a day. The doctor gradually prescribes more until their seizures are controlled, if side effects are not troublesome. Some people need to take as much as 4,000 mg per day, in two doses."

Also, from page one of info...
"Be careful if the doctor writes a new prescription using a different kind of pill. For example, if you've been using 500-mg tablets and the new prescription is for 750-mg tablets, be sure you use the correct number. Don't automatically continue to use the same number of pills as before."

Since the 500mg tablet can get split, I suggest you add 250 per day each week (for 2 weeks) as opposed to jumping directly from 1000mg a day to 1500mg.
For safety reasons, and to enable yourself to watch for reactions, adding AEDs slowly is a good idea.

Best of luck..
~sol

Keppra was one of a slew of meds I was put on while being tested for surgery. It did nada for me, but it has worked for many people.

Hi sol.

My doctor currently has me on 1500mg and told me to go up directly to 2000mg if I continued having seizures. I am not changing the amount the doctor has told me to take, just when I was taking them, which was not specified.

Also, by "increasing the dosage on my own", what I mean was, he told me to go from 1500 to 2000 if I was still having seizures after a week, and I didn't need to call him about it.

Instead of taking an uneven amount at uneven intervals, I am taking an even amount at even intervals. Given the timing of my seizures, I think my husband mau actually be onto something regarding how my body is absorbing and using up the drug.
My headaches always start early in the morning and disappear shortly after my morning keppra, and if they return, they do so 2 or 3pm.

Mousie-
I have something to add to your husbands theory. I take Keppra and Topomax, both which are broken down in the kidneys, and moved out more rapidly thru the body as opposed to a med like depakote, which is broken down in the liver. That is why the neuros regularly check your blood levels when you are on depakote to make sure it is not building up too high levels in your liver. When I was on depakote, I never had a problem with seizures at all. Now that I am on Keppra and topomax, I think that I have seizures in my sleep. Here's how it relates to your problem. I take my meds at 7:00 am and at 6:00 pm. 2-3 times a week around 3-4 am I will feel like I am being given shock therapy in my sleep. Feels kinda like when they use the paddles on the heart attack victims in the movies. It also happens if I try to take a nap on weekends around 2 or 3 in the afternoon. I agree in that I don't believe the Keppra and topomax remain as constant in my system as the depakote did. However, I hate to tell my neuro this because I don't want him to up my meds again. With the exception of these spells, I feel better on these meds than I ever did on the depakote.
Kelly

hi fzmousie,

After reading your post I started taking my keppra at 5:00am 500mg with vit b6 then again at 12:00 250mg and at 8:00pm 250mg Ive noticed that it has helped with nervousness and I've stopped having the crying fits... now though i get really tired in the afternoon... and have been having upset stomach & Headaches.....

I see my neuro oct 29 I don't want to have to switch meds again.....

thanks for your advice:)

angel

Well, I'll be different and tell you I really like Keppra! It doesn't cause side effects in many people, myself included. I think it's important to look at all factors before putting all the blame on one drug. Other medicines can cause similar side effects. Also sometimes mood or behavior changes occur as a result of the way seizures affect the brain, or the area where seizures are coming from may also be contributing to mood or behavior changes. When you add or detract any drug, it can change seizures or the way the brain is affected. In any case, people's response to meds varies from one to another.. Hope everyone finds one that works for them and doesn't cause side effects!

After being on Topamax for two years, Keppra is heaven.

I'm not crazy about the moodswings but I do take B6 which I think helps. I also don't think I'm at the right dosage because I get periodical auras.

With the topamax, however, I was rendered stupid. It was so bad my doctor put me on Exelon which is given to people w/ Alzheimer's disease. I had vision problems, cramps, insomnia and ALSO depression/anxiety.

I guess it's all relative.

The best med for me was dilantin...unfortunately it stopped working after 16 years.

For about 3 or 4 days after being put on keppra i was constantly feeling sick with headaches, then my seizures increased and increased and i ended up hospitalised. My neurologist refused toadmit it was the keppra and kept upping the dose which increased my seizures even more! It was 3 weeks of 15 to 16 seizures a day before they sarted totake me of it.

I'm up to 2000mg now, and still tired. Still sick.

I did not have a seizure yesterday and have not had one yet today. We'll see. I'm not sure that not having a seizure is worth feeling this way.

On the plus side the headache behind my right eye has finally subsided.

Hiya fzMousie,
sorry your'e still feeling tired & sick.. I felt the same (but on a much smaller dose). I'm actually really impressed you've lasted this long to be honest. What were you on before, i mean is it any better at all? cos although Keppra is really successful for lots of people, it doesn't suit everyone..might be worth thinking about smthg else?
Ruth x

This is the first med they've tried me on. It is also the only drug I am on right now.

I think my neuro wants to take me up to 3000mg before he takes me off and puts me on something else. :(

I don't want to go any higher than what I am on right now. I cannot function at work. :(

I guess I should just add a comment to give another side of the story and say it has helped me.

I'm currently on 1000mg of Keppra day and night along with Trileptol medication and it have helped me reduce though no remove the partial seizures. So it's not bad for everyone. I can't say it has given me a little tiredness, for me I think it's just one of those things you have to live with.

However as one of the previous messages has said and I'll have to agree with it doesn't help everybody. If it's not helping maybe you should be on another medication.

Also I will say 3000mg is an extremely high dosage.

Hope you can find a good way forward.

Steve.

Another comment on the side of Keppra. My daughter who is 11 takes 2500mg a day of Keppra and 700mg a day of tegratol. Only now on this higher dose are the seizures coming under control with them occurring less frequently and less severe (she has partial complex, often moving to tonic clonic) This is a high dose of keppra for her age and size, but she was moved up very gradually.Every time the dose went up for a week or so she felt tired and 'off', but now is used to it and while still tired it is manageable if we make sure she does actually get enough sleep. I think different medications work for different people - she felt appalling on Epilem, with bad headaches and just drained of all energy and enthusiasm. We still need to watch her carefully given the high dose of keppra she is on, we know that she may not be able to stay on it, but it is so nice even just to have a short repreive from the seizures.

I have been on Keppra for two years. At first I was exausted then after a few weeks I felt better more awake and the pill has worked well for me. I have tried most of them and I have to say that I was on topamax and that from the start was not good drug choice for me, I felt like its hard to explain not sharp it made my hard drive really slow if that makes sense also crabby and moody. I had my doctor take me off of that and I feeel a lot better.

wish everyone well.
T.

I should update and say that I'm off the keppra now and on dilantin (phenytoin sodium).

Physically, the seizures have let up. I'm not sure if they've gone compltely.

I'm mentally slow and I've developed an on and off tremor in my heands, but the actual seizures have slowed down considerably. My doctor did not put me on phenytoin for a long time, just long enough to slow down the activity. So...we'll see. :)

I had my first seizure 2 years ago after I had an aneurysm 19 years ago and 3 weeks ago my doc put me on Keppra. I was so hyper that my friends thought I am taking to much suger.....After Keppra every thing went down hill, mood swing, anger, hustile,.....the list goes on...I almost lost my job. Just don't know what to do.

I know how ya feel. I am taking Keppra,1600mgs in AM and 1600mgs in PM,along with a 1000mg dose of Neurontin 3x. It makes my temper very short. I cannot take people who are talking 90to nothing and always upbeat.I have a friend who is constantly talking,and I feel lke telling him to shut the (*&^ up at times,lol.I also have to deal with heel spurs,and my only way to get around without depending on others id walk. After a block or so,it feels like lightening bolts going up my calves to my thighs. Can't drive due to this condition. Makes you wonder just what you did to get dealt this hand. Its not fair!

I've been on 3000mg of Keppra for over 4 years and aside from being "drunk" the first month I was on it, it's helped me a great deal. I use it as a secondary to Lamictal (600mg) and have had no side effects to speak of. It has cut down & lessened the severity of my T/C's but I still have frequent simple partials. Overall, for my body chemistry, it works well.
Doug

I'll have to add a positive comment for Keppra here. My daughter is 24 now, and has had tonic/clonic seizures since age 9. She has been on a variety of meds over the years, with no improvement, and several declines in her seizure status. We had major problems during her school years and she went toxic on a couple of drugs. She got pregnant and was on Topomax and Trileptal and had a very difficult time with her seizures (all turned out well), but it was very rough. Many of her neuros told us that her seizures were NES, or psychological in nature, yet the continued to up her meds to a point where she could barely function. Last year, we found a wonderful epileptologist who put her in for a week long VEEG and immediately found where her seizures were coming from. He replaced the Topomax with Keppra and the change in her was DRAMATIC !!!! Her motor skills improved, her functioning returned to normal and she has now not had a seizure in 8 months. She is able to parent her 18 month old daughter, is getting ready to get her driver's license for the first time in her life and is now working full time. She is even thinking of beginning college after the first of the year. The change in her is like a MIRACLE !!!

On the other hand, I have complex partial seizures and take a small dose of Keppra along with Zonegran. When I was on a large dose of Keppra, it did nothing for me,and I had lots of side effects. Just goes to show that everyone is different when it comes to the meds, but I thank God every day for Keppra and what it has done for Jessica. It has truly given her her life back!!!

((( hugs ))),
Barbie

***************************************
"We are each of us angels with only one wing, and we can fly only by embracing each other." -lucian de crescenzo

I have to say that Keppra is the first drug I have taken that has had any long-term control over my seizures. It didn't stop them completely, but along with Mysoline, it works better than anything I've taken in 40 years. The only side effects I have are feeling tired and having slow response time. I'm not sure if it's the Keppra or Mysoline or a combination of the two.

We call Keppra KeppRAGE in our home. And no we hate it. Our son is a moody nasty emotional wreck.
Kim
Good luck

haha, i thought that was just me making the rage. but i guess not, i should have known though cussing and throwing away my medicines is just not me anyway.

ive been through this stuff before except with depression medications, and well none of them worked, they just made life a living hell.

having a seizure every so often and having my whole days back as my normal self sound alot more pleasing than aaaallllll of this..

do they even know why all of a sudden you get seizures, do they even care? how are they even supposed to fix whats wrong if they dont know what caused the abnormal brain functions all of a sudden in the first placE?

= \

I was on Keppra for 7 days and got drilled by a seizure that put me in the hospital for a month. Until then, my seizures were 60-90 second partial complex. This one surged for ?? hours.

However, it may not have been solely caused by Keppra because it works for some and there are questions about how/why doctor switched my meds. 500 Dilatin/day for ?? years, 10 days off everything during a voluntary inpatient analysis, and then started on 2000 Keppra/daily.

I'll put my 2cents in and just say that I take 2500mg. of Keppra spread through out three doses of two 1/2, two, and two 1/2 and have no side effects. The side effects I have now are from my Topomax increase and it's killing me. I'm actually switching neurologists because she doesnt seem to read the charts very well.

I gave the Keppra ago but am now coming off it. It wasn't a road I wanted to go down but had to give it a try no? It has caused a lot of hairloss otherwise maybe I would have perserved with all the other side affects for a bit longer. Was definitely suppressing my appetite, affecting my mood, not my happy go lucky self, lots of people commented. Anything could irritate me or send me over the edge. Am also on Topomax. I got up to 1000mg over a 3 week period, and am now on 5 day decreases of 250 mg. Its quite a dark road getting off it too, making me very emotional.

My 5 year old daughter is on Keppra since the beginning of this year and it seems that since she's been on it her seizures have definitely increased. At first I thought that it was working, but I was totally wrong. She whines a lot more than she usually does and she seems to be a lot more irritable. Every time she has a seizure the doctors increase the Keppra a littlbe bit more each time and it isn't working at all. Thank God that she has an upcoming appointment with her neurologist so we can see if there are any other medications that are available for her to try. She also is on Carbatrol and that seems to be working fine for her. But I feel your pain about Keppra, I don't think it works at all and the only thing about it is my daughter loves to take it, I think it's because it tastes like grape, because that's exactly what it smells like. Sorry you are feeling this way and I hope you find some relief soon...Good Luck

KK's Mom

So here's another positive one for Keppra.  I haven't been dealing with seizure medication very long... I was on Trileptal at first which I HATED.  It made me drunk, weird and stupid.  It also made me sick to my stomach and I eventually wound having an allergic reaction to it.

I'm currently taking 1500 mg of Keppra and feel so much better.  I still get my words jumbled up together occasionally and my appetite isn't what it used to be, but at least I feel normal compared to what I experienced on the Trileptal.  (Not to mention 2 sizes smaller!  Once I realized what was happening with my appetite, I started paying more attention and now make sure I eat regularly so all's good there.)

I like the Keppra, but I've only experienced two drugs so take that as you will.

Dear KK's Mom,
Thanks for your kind comments, I hope your daughter too find something that works soon. To my neuros horror I've decided to come off all the meds for a while and have a break. I'm off the Keppra and feeling likely the cloud of doom has gone and now coming off the Topomax as it gives me lots of side affects too which I feel are worse than the seizures. Best wishes to you and your daughter. Bex

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