Keppra is bad

Mon, 08/03/2009 - 00:19

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

Submitted by Josenni on Mon, 2009-08-03 - 00:36
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

Submitted by sifra on Tue, 2009-08-04 - 06:01
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

Submitted by Nigel145 on Tue, 2009-08-04 - 08:23

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

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

Submitted by EmiliesGrandma on Wed, 2009-11-04 - 12:07

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

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

Submitted by deirdre2 on Sun, 2009-11-15 - 22:53

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

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

Submitted by Music4me on Sun, 2009-11-15 - 23:50

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!!

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

Submitted by aessig928 on Thu, 2010-02-18 - 21:05

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...)

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

Submitted by snowwoman on Mon, 2010-06-21 - 21:52

 

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. 

 

 

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

Submitted by bergje on Mon, 2009-11-16 - 03:02
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.

Kepra is bad

Submitted by YetiBigfoot on Fri, 2018-09-14 - 13:22
I get both sides. Kepra turns me into a raging loon. I sit alone, plotting on how to do myself in . I'm angry .. those poor telemarketers. And nobody told me I got to find out when I started taking it. I slept or cut myself, had graphic suicidal thoughts. And mean... oh was I mean. I would cry because I could tell I was a mess. Now they want me to take it saying the seizures are worse and i could die on the next one. But my question is if I take it i could die too so...

Sifra

Submitted by Machiavelli87 on Fri, 2018-02-23 - 23:46
Move to California. It's completely legal now.

Re: Keppra is bad

Submitted by 3Hours2Live on Mon, 2009-08-03 - 04:00
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

Submitted by jenstau on Mon, 2010-11-22 - 21:02
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?

My change medication regime

Submitted by Gemma H on Sat, 2019-01-19 - 19:01
My change medication regime when something like that(it's new been 5yrs so can't remember exact amounts) my neurologist took 2 months to change me fully over which worked really well for me but my situation was slightly different(my gp had got me physiologically addicted to pain meds without me realising forr back pain, so I was going through a double meds change so said was better safe than sorry.

Re: Keppra is bad

Submitted by kimberly1975 on Mon, 2009-08-03 - 06:44
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

Submitted by bobbyl896 on Mon, 2009-08-03 - 12:02
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

Submitted by wyboemail on Mon, 2009-08-03 - 10:40

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.

 

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

Submitted by mandasuewilson on Mon, 2009-08-03 - 11:34
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

Submitted by AmyG on Mon, 2009-08-03 - 21:40

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!

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

Submitted by apavardchg on Tue, 2009-08-04 - 08:24

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. 

 

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

Submitted by gabi.goo on Tue, 2009-08-04 - 23:31

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.

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

Submitted by momma26 on Wed, 2009-10-14 - 10:48
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

Submitted by steve14 on Wed, 2009-10-14 - 12:56
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

Submitted by irongrip22000 on Sun, 2009-11-15 - 18:00
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

Submitted by bergje on Sun, 2009-11-15 - 19:45

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.

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

Submitted by groundshaker on Mon, 2009-11-16 - 00:20

     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.

     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

Submitted by winged on Thu, 2010-02-18 - 19:42

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.

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

Submitted by cmunley86 on Thu, 2010-03-04 - 22:37
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

Submitted by tara michelucci on Fri, 2010-03-05 - 01:58
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

Submitted by staceinspace on Tue, 2010-06-01 - 11:07

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!

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

Submitted by re6e11 on Wed, 2010-06-16 - 02:13

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

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

Submitted by snowwoman on Wed, 2010-06-16 - 09:21

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.

 

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

Submitted by tmaried04 on Tue, 2010-06-22 - 01:46
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

Submitted by Bharatt on Thu, 2010-11-25 - 08:51

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.

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.

Had epilepsy since puberty

Submitted by winb@btinternet.com on Sat, 2014-12-06 - 15:56
Had epilepsy since puberty now an oldie and in the 50's they gave you phenobarb.I was okay with it but they thought I'd need epanutin, bad.  Now they say keppra, like others I sleep all day and only on 2x750 a day.I sleep all day and no one will take me off them so cutting them down slowly by myself so I can do things again.

Had epilepsy since puberty

Submitted by winb@btinternet.com on Sat, 2014-12-06 - 15:59
Had epilepsy since puberty now an oldie and in the 50's they gave you phenobarb.I was okay with it but they thought I'd need epanutin, bad.  Now they say keppra, like others I sleep all day and only on 2x750 a day.I sleep all day and no one will take me off them so cutting them down slowly by myself so I can do things again.

Keep going and never give

Submitted by winb@btinternet.com on Sat, 2014-12-06 - 15:59
Keep going and never give inGood LuckAnother Mrs B xx

Hey guys, I've been on Keppra

Submitted by Anonymous on Thu, 2014-12-18 - 04:23
Hey guys, I've been on Keppra since 2013 which was 1000mg a day, I had a seizure in September 2014 and they upped them to 1500 a day, but ever since I've been on Keppra all I wanna do is sleep, I feel exhausted all the time (which isn't like a normal 19 year old) I can sleep for hours in the day, I get stomache cramps and always feel unwell, if I get a bug it makes me feel like I'm dying it takes all of my energy, and I always feel like I'm snapping at my partner for little things, is this normal? I feel like no one understands me and my mum moans at me for sleeping a lot and thinks I'm exaggerating when I say I feel poorly (which is most of the time)Thanks Alice :)

Hi Cody, when I first started

Submitted by Anonymous on Sun, 2015-01-11 - 03:38
Hi Cody, when I first started taking it, it was 2013 I believe as that's when I was diagnosed as being epileptic, they don't tell you a lot they just say this would be good for you, I work Part time as a carer and it takes it all out of me, I could sleep all day if I had the choice. If I miss a max of two dose's it'll cause me to have a seizure due to me having a low brain threshold, in theory these meds have worked, but in others I get bad tummy pain, sometimes I have to take laxido as I can't go toilet regularly, it also gives you a very dry mouth if you have noticed? My advice is keep taking them see how you get on once it's been 6/7 weeks as they would be fully in your system and see how you feel about them now xx

Im glad someone else likes

Submitted by saz84 on Thu, 2017-04-27 - 09:25
Im glad someone else likes Keppra i love it too 

well, for me, I'm taking

Submitted by LazyGuy on Wed, 2017-07-05 - 10:42
well, for me, I'm taking 2000mg keppra and 100mg Lamictal perday. Tbh, i have those mood swings and depression and some of those rage outburst.  i sleep like 15 - 20mins after 2 hours of taking my meds.  Those mood swings and anxiety are out of control sometimes, so its best if i don't open my mouth at all if i'm with my friends and families. 

I have been on keppra since I

Submitted by HelenB_59d7a139aac8f on Fri, 2017-10-06 - 11:28
I have been on keppra since I started having seizures and only now (one year after starting it) am I becoming irritable. Otherwise no side effects (1500mg twice a day)

Brivaracetam caused psychosis

Submitted by micheleddc on Fri, 2017-10-20 - 11:31
Brivaracetam caused psychosis in my adult son. He was paranoid, manic, delusional, and physically threatening. It is not harmless.  :(

My mom was on 500mg of Keppra

Submitted by Epi Son on Fri, 2017-11-03 - 20:00
My mom was on 500mg of Keppra 2x per day. Within 24 hours she has numbness in her arm and loss of appetite. Working 48 hours she becomes weak and irritable. She becomes confused and after a week she had no interest in person hygiene, was too weak to walk without assistance, irritable with family trying to help, and showed psychiatric concern such as a personality disorder. Once she was off. It took a week to see conversation, recall, and more independence. After 2 weeks she would be eating normally, and have most recall back and not showing sign of a personality disorder.This has been the worse med for my mom. We are trying to figure out what we can use. 

I don't feel real, like I'm

Submitted by Kjones22 on Sat, 2017-11-25 - 18:44
I don't feel real, like I'm constantly in a state of aura. As in, I'm skipping between alternative realities and death is an overwhelming inevitability that brings on panic attacks and anxiety. I've been on it for years (through pregnancy) and it's only just started now, when I felt like I had finally gotten on top of it. To add to it my sezuires have started coming back, particularly during sleep. I don't want to live like this anymore, I want to enjoy my 2 year old son and not be scared to be alone with him. 

"... takes me a long time to

Submitted by Hu on Sun, 2018-01-07 - 14:38
"... takes me a long time to remember or recall memories from that day although I can’t remember much from my childhood" I feel the same way. I don't know if it's from the medication or my seizure disorder. It's almost like I blackout, and have to be reminded what happened to me the day before. 

I has the same issues with my

Submitted by bearcma on Sun, 2018-02-11 - 05:11
I has the same issues with my memory and irritability. I talked to my Dr and I started taking half a pill in the am and 1.5 at night. It wasn't a complete fix but it definitely helped.I remember the beginning of each of the days of the seizures but everything till the next morning is gone. As for the childhood memories I found it helpful to look at old photos to try to jog me memory. Some of the things to do with remembering how to do a learned physical activity like wiring a socket or operating certain tools I had to rely on muscle memory. If I thought too hard about it, it would "slip away". Just be patient and surround yourself with good people that can help you.

Yes, the same problems with

Submitted by Patman777 on Tue, 2018-02-20 - 00:26
Yes, the same problems with me too.  The doctor told me to take 750mg and discuss medications in a week.  I felt a little better, then I tried 1000mg twice for a day.  And the problem seems to be coming back.  I don't even know at this point what to think.  I don't know if it is causing my nose to be bigger, redder, and more swollen or if it is the same cold.  Keppra keeps me in the house all day like I feel too crazy to go anywhere.  I ordered some Magnesium L-Theronate, hoping that will allow me to take less meds.  I hear very good things about this form of Magnesium.  It is worth researching and trying for sleep aid and for a seizure reduction.  

I've been taking it for about

Submitted by Big Moma on Fri, 2018-03-02 - 08:19
I've been taking it for about 2 months and my seizures have increased and are more intense and I'm sick all the time.  No hallucinations but don't have an appetite.  

Going thru Keppra transition

Submitted by BardicBird on Wed, 2018-03-14 - 22:33
Going thru Keppra transition hell at the moment. It's... bad. Bad enough the doc got a bit freaked and offered me a choice of going ahead and slowly building up a new med over two months (while still taking the same bedamned Keppra amounts, FUN!) then slowly wean off the Keppra for another month or... inpatient for a week to go cold turkey. As I got my butt out of the hospital as fast as I could (my one proud moment was successfully arguing with a nurse to let me WALK out and not sit in a wheelchair) I said I would take the slow road but now, I'm seriously wondering if I went and screwed the pooch. This... is hell. I've had manic depression my whole life, but I actually had a pretty good handle on it. Didn't even take meds anymore for it as I learned how to distance myself from it, realize I was in a swing, it wasn't really as extreme as I felt, and could get thru. Now? One moment so enraged I had to walk away from a situation or potentially do real bodily harm to someone (they were saying how 'lucky' I am and should be looking at this time as a mini-vacation from responsibilities. For the first time in my life I was seconds away from actually punching someone.) the next just numb, then crying, back to numb. Nightmares too so while I am so exhausted all the time I can't think straight or gather my words correctly (I'm wearing out my backspace button. And I'm a writer. This is a bad bad thing.) sleeping itself is no relief. Dizzy all the time - when I first took it, the first few days I joked to my husband it was kinda like being on the TeaCup ride at Disney. But while that may be fun for 10 minutes, days and weeks of not being able to get off has become a new hell. Stairs (in my three level home) are fraught with danger. And even setting alarms to try and remember to eat isn't working. Food is just another nightmare to face. I'm not going to top myself. I've unfortunately been in the room when someone shot themselves, and I used to work for a cleaning company that worked exclusively with the police to clean up homicides, suicides, accidents, etc. I've seen the aftermath and I wouldn't do that to my husband. But god. The thought never seems to go away. And as stupid and childish as this is, I can't help but feel like I'm being punished for something. I've always had greyout, times when I just spaced or sat down on the ground ~wherever~ I was, time it suddenly got hard to make my speech make sense, which now the doc says where lifetime 'episodes' of mini seizures. But.. I never had another doctor ever even mention that possibility. In the last year, for the first time ever, I had ~2~ major episodes. First I woke up to my husband saying everything was okay and the ambulance would be there in a min and I was confused as fell for a few hours. But I got home that night and it was written off as a one off, stress induced thing. The 2nd was... worse. I was apparently in the hospital for 3 1/2 days, and I only remember the last 45 min. I basically lost about 2 weeks of time and now have a weird scar in my mouth where I bit thru. Yes, it was bad. Yes, I'm sure it terrified my husband (as it's all a complete blank for me, it's tough to take it seriously.) but... it was 2 full blown seizures in the 38 years I've been on the planet. To be on this medication that is so completely screwing me to the wall seems stupid and extreme. To be told I have to give up driving (to someone who was a gypsy her whole life, traveling as a costumer and performer at Renn Faires and the life, used to just getting up and GOING whenever and wherever the wind blows) just sucks. To be told no more baths to someone who loves nothing more than a hot steamy bath for an hour with a book... crap. Can't even take a walk alone for 'fear of falling and no one being able to find me - I'm not a child. To take this hellish med for 2 bad spells in my life, for the ~rest~ of my life (or at least be on another one soon) just seems... and I get this is childish, but it's.. . unfair. At least it feels that way. I can't even tell what emotions are MINE and what are chemically induced. I can't get a grasp on things and life is just passing me by. It took me forever to write this drivel and no doubt I'll be embarrassed in an hour for whining like this, I am just so overwhelmed and fighting every moment with a chemical I'm required to keep putting into my body 2x a day... to make sure I don't forget to take it or space and take it twice, I agreed to text my husband each time I take it. Those texts have boiled down to 'Poisoning myself, bye'.And the last 'effect', and I am saying this as a married woman and as delicately as possible because I know there are teens on here. But seriously. I love my husband. We have had a great interpersonal relationship ( trying for vague but honest) but at the moment, on these meds? Not even if I was paid. No way. No how. Ain't happening. The idea both exhausts me and kinda makes my nauseous. It's not him. But good god this sucks.

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