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Nigel145

Keppra is bad

I've been prescribed 1000mg Keppra to be taken twice daily.

Here are my side effects:

crippling morbid depression, uncontrollable anger and irritability - i have never in my life felt so depressed that i've wanted to kill myself until taking this medication. i've always been pretty upbeat, if a little irritable due to some minor everyday life stress like paying the bills. Now, i need to focus all of my daily attention just to suppress the suicidal thoughts and anger, like i'm a ticking time bomb waiting to explode. My neurologist says it should level off after 4 or5 weeks and then i'll feel "normal". Yeah, as if feeling like i want to die constantly is "normal".

loss of appetite and nausea - i have to force myself to eat because i don't get the urge anymore. if i don't eat, i get headaches from low blood sugar. Before taking the medication, i was a serious foodie, to the point of seriously considering being a chinese restaurant critic. Now, i can't even look at a pb&j sandwich without feeling sick to my stomach. My neurologist says i'm 75 pounds overweight anyway so its good for me to lose some weight. Feh. I'd rather have seizures than lose my love of food.

extreme sleepiness - i'm napping 5-6 hours in the afternoon, as well as sleeping my normal 7-8 hours at night. Tell me how 14 hours of sleep a day can possibly be good for you? My neurologist says not to talk to him about it until i have a sleep study done for sleep apnea. Bogus. I've never needed more than 6-7 hours sleep a night ever in my life until taking this blasted medication.

Those are the 3 major ones. I found that taking a multivitamin with b-supplements helped for about 2 days, then kind of just stopped working.

Anyone else wanna post their Keppra side effects? Maybe after a while, someone will listen.

 

Comments

Re: Keppra is bad

Hi Nigel,
I'm sorry to hear about your experience. How long have you been taking Keppra? How much dosage? How often or how bad are your episodes? I'm sorry for asking so many questions.
I just started Keppra tonight. I'm a little nervous. How about seeking for another neurologist?

Re: Keppra is bad

i have been on Keppra for about one year. It makes me sick after I take it, and that last for about one houre. What is worrying me more is that slowly the PTT[ blood coagulation time ]in rising. This is the reason I can not have Depakot and other AED which is interfering with the blood coagulation. I take 1500 mg a day of Keppra. i must say that it helps a little.  What helps me the most is; when I feel a sz comming to take 2 pufs [smoke] of marijuana. That kept me szfree for one year. at the moment it is not avaible and again started with having sz and hurting myselve. Any advise from you?

Re: Keppra is bad

I certainly wouldn't encourage anyone to smoke pot (or any regular cigarettes even) to keep off seizures. Smoking, drinking alcohol, or doing drugs can only make things worse in any case.

To answer you question, I've been on Keppra approximately 2 1/2 weeks. I thought it was strange my neurologists started me on such a high dosage so fast especially since I've seen that most folks seem to be gradually increasing their dosage over time.

Also, why wouldn't the neurologists warn you about these crippling side effects before starting the medication? You would think they would at least suggest counseling during the first few weeks anyway.

- James

Re: Keppra is bad

My granddaughter is on Keppra @ 12.5 mls in the am and 12.5 mls in the pm..... she has headaches but did have some depression but she was on 3000 mg a day and reduced it to what she's on today...she is 14 and is diagnosed with atonic-clonic epilepsy since Feb 2009...... they think she is having complex generlized seizures ( whatever that is?) but until her meds are straightened out she lives with depression and did go through a brief suicidal thought period....... It did seem like she had more seizures on the higher doze of Keppra then now......her blood sugar levels have dropped to 25 at one point....... and she is not a caniadate for surgery at this point...she is presently going to Valley Children's in Madera, California but my daughter asked for a referral to take her to UCLA...... I hate this disease and Im doing what I can to understand it....

 

Emilies Grandma

Re: Keppra is bad -Please don't make generalizations

Saying something as general as "Keppra is bad" can be misleading and even frightening for others, when Keppra may be the very drug that

provides seizure control for someone.  I've been on Keppra for over a year, and although  I had side effects, they were managed with dosage adjustments.

 

Please talk to your doctor about your side effects.  If it's bad for you, please just say that,  rather than  making a sweeping judgment.

 It's hard for all of us; let's work together and not scare each other.

 

Thanks,

Ramona

Re: Keppra is bad -Please don't make generalizations

Hi folks,

I totally agree with Ramona.  Let's not scare each other.  e is hard enough to live with anyway.  I do have issues with my memory, but it has greatly improved since my dose of Keppra was increased.  I struggle with cognition but for the most part it is under control.

I take 1000mg of Keppra 2 X day and 300mg of Lamictal 2 X day.  The Keppra seems to have helped the overwhelming dizziness that I get from the Lamictal.  It's always good to walk in a straight line to your desk.  :) 

Also, I take Super vitamin B complex which is important because the AEDs can lower your vitamin B in your system.   So, be sure to take you vitamins!!

Hang in there everyone!!

Re: Keppra is bad -Please don't make generalizations

Hey,

 I started on Keppra (well the generic of Keppra) 2 1/2wks ago and its been hell since I started. My doc. started me off at 1000mg in the morn and 1000mg at night but I was feeling naseous and so so tired all the time so he reduced it two seperate times ...I'm now taking 500mg in the morn and 500mg at night and I managed to stay awake all day today ...which is the first day I've managed to stay awake in the daytime since Ive been on Keppra. But its so hard to wake up in the morning. I sleep through my alarms, I'm in a fog for hours after I wake up. I have to force myself to eat anything because I have no appetite anymore. Personally, I hate this shit.

 

I'm glad for all ya'll that Keppra is working for. But for me...Keppra sucks. I hear you that say that medicines are different for different people though...because I've been on Zonegran for four years and hardly had any problems with it (except the whole problem of my body totally getting used to it and having more seizures...)

Re: Keppra is bad -Please don't make generalizations

 

I agree with Ramona and Music4me. Everyone is paranoid enough about AED drugs that it sometimes comes to the point of pointing the finger at the AED everytime something out of the ordinary happens. I can definitely understand why, because I feel that way too sometimes, but maybe sometimes it isn't the drug.

Keppra has worked for ME; I have some side effects (sleepiness and weight gain that has been manageable), but as far as I know, have not had a seizure since starting in April.

As for doctors not warning you, it COULD be due to a variety of reasons.

1) They are ignorant and think the pharmacist will do it. The pharmacist thinks the doctor will do it.

2) They don't want to induce the nocebo effect--where patients start manifesting a bad reaction because the drug has gain notoreity for such a reaction. It's like the opp. of the placebo effect where people genuinely feel better because the drug is famous for curing something.

For example, if the doctor keeps cautioning you you will be tired with the drug (and many people with epilepsy are more tired anyway), the next time he asks if you're going to be tired, it's hard to actually tell if you were really more tired, or you were just having a bad day.

My doctor warned me about suicidal thoughts and/or psychotic feelings and behaviours, and told me if it happens, stop immediately and see a doctor. Every other side effect, call and consult with the Epilepsy nurse.

3) A combination of 1 and 2, or some other reason.

So let's not scare each other. It's tough all around, drug or no drug. 

 

Re: Keppra is bad -Please don't make generalizations

i can understand where you're coming from Ramona, but at the same time, there are side effects that people experience that your doctor won't tell you about.  That IS the point of these boards.

Re: Keppra is bad

Hi James,

Repeated and intense ideations of suicide while taking Keppra could easily become an emergency
situation!!!

With my first try of taking Keppra regularly, I was lucky enough to be taking Dilantin with it. I was
going to slowly go off the Dilantin, with the Keppra to replace it. The side-effects of Keppra were
too intense after a couple weeks, and I quickly reduced dosage over a few days to zero, while abruptly
increasing my Dilantin dose to the max to try to cushion the Keppra withdrawal. I was switching from
Dilantin because of osteoporosis and problems with maintaining stable blood levels of Dilantin.

After I found out that Keppra should be titrated very slowly with individuals who have intense adverse
psychological effects from usual titrations of Keppra, I very slowly started with Keppra again, and in
very small and slow steps, built back up to a therapeutic daily dose of Keppra for myself. Proceeding
so slowly with Keppra prevented the side-effects for me this time.

My next problem with Keppra was when my regular doctor refused to renew any AED prescriptions for me unless
I return to a neurologist that became inaccessible because of transportation problems and Medicaid. I
then decided to use Keppra only on signs of an impending tonic-clonic, and figure I have about a year's
worth of Keppra left using it that way. Within the next year I hope for a solution with prescriptions,
or to stop using AEDs, and live with the tonic-clonics like I do with the partials and migraines now.
With only occasional use, Keppra seems to stop my migraines also, either that or I just sleep through
them with no memory.

I hope this helps. Good Luck, and please be careful!!!

Re: Keppra is bad

Hi, I know this is a really old post so you may not even get this, but I was just wondering what dose you were taking when you titrated the keppra slowly. My doctor just put me on this med after I had terrible side effects to topamax and the allergic reaction to lamictal. I was just diagnosed a month ago so keppra will me the third med I have tried ever. The side effects scare the crap out of me, especially after how the topamax made me feel. My doc said he thinks I am sensitive to medications so he's starting me slow on keppra. This is how my dosing will go: 250 mg at night for three days, then 250 mg twice a day for a week, then 500 at night & 250 in the morning for a week...etc. Basically I'm working up 250 mgs a week until I get to 500 mg twice a day and we will see if that helps my seizures. I'm thinking about going on and just taking 250 mg for the first week instead of only 3 days. I just took my first dose tonight so we will see, but I'm still scared. Any thoughts?

Re: Keppra is bad

I was and am taking Keppra. With 1000mg. a day Keppra made me very irritable, mean, depressed,and slept alot.  The littlest things would set me off. No one really wanted to be around me. Everyoneone said it was not me. I'm always nice to everyone. But I wasn't then. I took 1000mg. for about 2 months. I started off with 500mg. Then they lowered it to 500mg a day. I've been on it since Nov. It's not to bad with the lower dose but I wish I still didn't have the side effects.  I just have to deal with it. I really don't like Keppra but I know I have to take it along with the other meds. I have alot of side effects from all the meds I've been taking. Plus I take lamictal 200mg, Lyrica200mg. And they still don't work.  

Re: Keppra is bad

Im taking Keppra too...500mg am and 500mg in the pm.  plus dilantin 100 in the am and 200 at night. I too hate the side effects. Ive been on dilantin since my seizures started in '89.  Now Im looking into surgery. I do not like these meds running my life, the side effect are horrible...same as you..depression, irritable and very tired all the time..my doctor say Im getting old...thats the reason...thats why I looked into surgery as a 2nd opinion... look into it, it cant hurt.

Re: Keppra is bad

Start taking Vitamin B 100 and this should help. My 10 year old son is on 1000 mg a day and he takes one vitmain B 100 in the am with breakfast and that helps control the side effects for him and many more people that take the B vitamin. We only use the Trader Joes brand since it is all natural.

Good Luck.

 

Re: Keppra is bad

I take Keppra XR 500MG... three in the morning and four at night. I do not have suicidal thoughts or irritability though. I have slight weight loss, constant hand tremors (manageable) and I'm not overly drowsy like I was on Depakote in fact I have more energy. I am sorry to hear about all of you who have bad side effects from Keppra and I hope it only gets better for you all and not any worse!

Re: Keppra is bad

I was on it last year- right after having my first seizure at 30 yrs old. I know it is used because it is in your system in 24 hrs-- but  I had to get off it-- I went insane- it is called the rage drug.... I felt my blood liter4ally boiling over things such as my BF having the remote. I told me neuro to take me off- and I started on Lamictal- but have had 3 seizures since then :-(

It is frustrating!

Re: Keppra is bad

Keppra is my first and only AED medication. I do not know the side effects of other drugs. In fact, it took me a while to get use to. I start with low dose and they increase it overtime. I need to sleep a lot - 8h per night and 2h nap. Now I can manage without nap or a short one. Before, my diagnosis, 2 years ago, I was already a good sleeper. So if my body need a little more, why not.

Now I am on 1000mg twice a day. My appetite decreased a little but I am back on track. For your diet, maybe you can try different types of food. Sometimes it is a specific type that your body is rejecting. For instance, I am living in India (for a year). I cannot stand Indian food anymore. I have to find non spicy food. In brief, you could switch your diet to find your love for food. Your body is telling you something, try to listen to it.

I am from time to time depress but I cannot say it is a direct cause to the medication. I always been like that. It is my personality.

One thing that I just started is Yoga. It seems to focus and quiet my mind. I like it a lot. And it gives me a push. So you should try to find an activity that you like and see if it helps.

 Not everyone is reacting the same way. Give a try and maybe ask for a second opinion. 

 

Re: Keppra is bad

sounds the same to me as zonegran. i felt the same i couldn't look a food without feeling sick, i lost over 50 pounds. i slept all day, i went to school just so i could go, but then i'd fall asleep when i hit the desk. i felt depressed, i wanted to commit suicide. its was crazy, but i dealt wth it bc that was the only mediacation at the time that was controlling my seizures.

anyhow, i know that i went on this rant about a different med, i just heard so many good things and bad things about it. i just hope everything works out with you and this medication. 

i think you should really go talk to your doctor about whats happening.

i wish you luck with you being sz free.

Re: Keppra is bad

My mood swings were so bad about 1 year into taking it that I got into a physical altercation with my stepson whom is a teenager. After talking to my primary care physician and my neuro both decided that a anti depressant was the first thing to try. They put me on one, and although I still have some minor mood swings nothing compares to what I was experiencing a year and a half ago. My moods are not in near the swing that they use to be, but my Keppra levels are still the same, so I am of the belief that the anti depressants were a god send for me. Good luck to you in trying to find what works best all around!

Re: Keppra is bad

paralysis. basically I thought I had chronic fatigue syndrome and thought I was dying a slow death. I could not do anything. now on Lamictal and topomax - instead of lamictal and keppra and everything is sorted.

Re: Keppra is bad

i take 3000mg of keppra xr a day and my sleeping and eating patterns are really getting weird. i have a lot anger flashes for now reasons and nearly attacked my mom for a reason i cant remember. my hands have been twichting now and again and that has only started when i have taken keppra. i think in 4 months when i see my nureo i am going to ask to stop taking the keppra and try something new.

Re: Keppra is bad

i'm a 22 year old male, I had just turned 21 when I was on Keppra.  I had uncontrollable rage, i was incredibly irritable, depression (worse than i already had), no appetite, i was tired all the time but couldn't sleep, and the worst was no mouth filter, if I had a thought in my head it came out, which to say the least was not helpful. 

 hope this helps.

Re: Keppra is bad

     I see there are some people on here that Keppra is working for, and I am glad that this medicine is working for some. I am glad however, that this thread was posted, because I am going through the exact same thing, anger issues, excess sleeping, depression etc. I was beginning to think I was crazy, I now realize that this may be the medicine for me. although I had high hopes for this drug, the side effects are horrible.

 Thank you again for posting this.

Re: Keppra is bad

1. You need to get a new neuro. This one ignores your problems and makes you feel crappy.

2. Is it possible for Keppra to actually CAUSE seizures? I've had myeclonic epilepsy for most of my life, but I was prescribed Keppra after I switched to an adult neuro. Immediately I became a CRAZYPANTS who flew off the handle at the smallest thing. This did level off over a few months, but that following semester I also had the worst depression I'd experienced in years and failed nearly all my classes. However, I have a history of depression so I don't know if that's related.

Here's the kicker: my first EVER TC/grand mal occurred about two months after being started on Keppra. I had another one about two months later. After one of these (can't remember which) my Keppra dose was raised to 1500mg. Since then I've been easily angered, had way more suicidal ideation than usual (again, keep in mind I have a history of depression - though I have never had this much in the way of thoughts of suicide) and regularly have TCs around my period.

Now, it's totally possible that I was just destined to start having grand mals at age 22. But that's pretty random. My seizures are catamenial, they've always been worse during periods and around times of transitioning hormonal activity, began worsening around puberty, etc. So: 22??

Likewise, my whole maternal line (my mom and her sister both had seizures) have these same kind of seizures and at the same time I was prescribed Keppra, the SAME DOCTOR I WENT TO had figured out that it did nothing for my mother and made her migraines and potentially seizures worse. WTF?

 Unfortunately, this doc is in another state - she's supposed to be a holdover until I can find a new neurologist where I live now, which is going to be tricky since I'm uninsured. Which means I can't discuss this with anyone and basically am just getting my meds blindly refilled. ARGH.

Re: Keppra is bad

Well, I was put on 1000 mg like you and taking it twice daily. For the first few weeks, I felt really dizzy and tired. Then that went away.  I'm now on 2000 mg of Keppra a day, and am now feeling drowsy and dizzy again. I don't know if it's because of the medication being increased, or it not agreeing with me. It could be me getting a cold too. Little things still do bug me though. Didn't experience nausea though. You should get a new neurologist. He doesn't sound too friendly.

Re: Keppra is bad

i took that stuff for a week before i insisted going off. i agree it is horrible. we all have bad days - but rev that up by about fifty, and it's like we're all a bunch of depressed mussolinis running around screaming at our loved ones, irritated with all of the things they do.

the extra sleep is likely a side effect from the depression, not apnea. get a new doc.

Re: Keppra is bad

I am sorry to hear of your side effects with this medication.  I truly am.  Like all AED's , these medications are highly personal in nature as are their effects on the body.  Adjustment to them can take quite some time as well as finding the right therapeutic dose, if there is any for you and this particular medication.

I was on Topamax and fter 6 months of hell, I had to switch to Keppra.  I have been on Keppra off and on many times before and did not experience these side effects.

Question:  Are you taking generic or name brand?  Also different generic versions can react in your body and a lot of people do not know that either.  

Generics are all different in their bioavailability in your bloodstream so perhaps that is also the problem.  You can try different generics at your pharmacy.  When I was on Topamax I could not tolerate one generic of Topamax and had to switch to another generic and then was fine.

AED's are complicated for those who live with epilepsy and determining:

1. Dose

2.  Schedule

3.  Adjustment

4. Side Effects

5.  Whether to give up or stay the course

 Are just a few factors to work out as a collaborative effort with your neurologist who should LISTEN to you.  

I hate it when any doctor I have does not listen.  I agree.  Topamax took away my appetite.  Also my ability to taste my food which sucks.  There is a name for this..it escapes me right now..will post it when I remember it and it can cause your food or your mouth to taste like metal as well...

 I am on a smaller does of Keppra..and perhpas your dose is too high?  I am not sure..

I know this..seizure medications are difficult and the time it takes to adjust is different for all of us.  Venting about them is helpful though and you are in the right place to do that!

So vent away!  I hope that whatever your medication ends up to be that your love of food resumes and the right drug is found for you and the support you need!

Re: Keppra is bad

i'm on 500 a.m. and 500 p.m.  You'd think it was nothing compared to other doses.  I was on 750, but I cut it down myself because I just was not here, falling down in the middle of roads, all sorts.  The 500 dose is making me feel odd - disoriented.  I stopped in the middle of the road to admire the Sun and the Moon.  Later in the day I feel really down, so down I think of other things which are bad. Looking at people, they're there, but I'm not.  this is half an hour after taking the morning dose.  Unit at hospital tomorrow, but they've known for a long time and are just ignoring my problem.  They tell me to go to my GP.  My GP tries to contact them.

It sounds bad, but it's really encouraging to hear other people have similar problems.

16 June 2010

Re: Keppra is bad

Hey we sound alike in the sleep department! I used to sleep about 8 hours a night, or 9. When I first started Keppra, I slept an average of about 14 hours a night (10pm-noon!), and catching 3-4 hour sleeps in the mid afternoon before feeling like crap again at 9pm. I called the epilepsy clinic, and they told me to try and let it work first because my body needed time to adjust.

I stayed with the meds, slept (short naps) in all my final exams, and my GPA dropped. I couldn't stay awake long enouhg to finish my papers!

I'm still sleeping a bit more than usual, although it's become better.

But this was better than when I was on Topamax, in which case, I couldn't speak, read or write properly because everything was all haywire. I'm still having word-difficluty problems, but not as bad as wehn with Topamax.

I had practically no appetite for anything when I first started, eating sometimes only a banana the whole day, with maybe some milk or juice. The doc kept warning me to never skip meals because it might trigger a seizure, but food made me feel nauseated. Now my appetite has come back with a vengence and I eat alot!

I haven't had a seizure (well, I think!) since starting Keppra in April. So I guess I'm sticking with Keppra.

 

Re: Keppra is bad

well i have been on keppra for a week and the constant aggitation, the lack of wanting to sleep, the depression, the swelling feet, the total lack of ability to walk let alone think and the way i have to tell myself to get over it is crazy. im new to this epilepsy thing although  i have had it for years just did not know it. o and the memory loss!! does it get any better!??

Re: Keppra is bad

Hi

When Dilantin level didn't build up I was put on Keppra. Felt the same side-effects described in the original post. Hurt me a lot. Anger, depression and all... I wish some1 could create a better AED with no or least side effects! However, sometimes we have to live with these necessary devils.