Chat and Community Forums Closed

Due to the popularity of social media, we have seen decreasing engagement on our forums and chat. Please know we want to keep talking to you about epilepsy, seizures, and what you need. We want to stay connected with you.

Community Forum

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

Re: Does ANYONE like being on Keppra?

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

Re: Does ANYONE like being on Keppra?

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

Re: Does ANYONE like being on Keppra?

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've had epilepsy since I was

I've had epilepsy since I was 12 or 13... the end of seventh grade. I used to blame everything on pills. But now I'm older and I think you need to stop blaming the pill and blame yourself. It might be the pill. But no matter what I do, I can't find out what those pills are even made of just by an internet search. I think I would need to start a covert terrorist operation just to figure out what's inside these anticonvulsants they're giving me, and that always made me the most uncomfortable I think. Is just not knowing if they grew plants or are just giving me old chalk from classrooms or what they are doing to me. Maybe they think I'm impressed that they have a long science name and know all the chemicals, but honestly that's just rubbish to me, if I don't know the actual production that went into the pill. I know that penicillin was originally taken from a mold, why am I so unimportant that I am not allowed to be told what's in this? (disclaimer: am not about to break into any medical production factories like a video game character, don't have the power)

I started using keppra seven

I started using keppra seven years ago. In the beginning, I took two pills a day. I could barely raise my head from the pillow. I then realized that the dosage was too high for me. I use keppra to control my not convulsive seizures. I take now one pill a day in the evening, works much better for me. I have had maybe 4 seizures in the past three years. I don't enjoy taking any medication, but if it helps me keep healthy  I'm all for it. 

I've been on keppra for a

I've been on keppra for a while, and I can't give you answers on how to feel better, but maybe, try to feel better. practice buddhist mindfulness. focus on what's good instead of what's bad. have a dream, and even if you never reach it, try to live your life and enjoy what you can. 

Is one of the side effects of

Is one of the side effects of Keppra hair loss?

I've had epilepsy since I was

I've had epilepsy since I was 12 or 13... the end of seventh grade. I used to blame everything on pills. But now I'm older and I think you need to stop blaming the pill and blame yourself. It might be the pill. But no matter what I do, I can't find out what those pills are even made of just by an internet search. I think I would need to start a covert terrorist operation just to figure out what's inside these anticonvulsants they're giving me, and that always made me the most uncomfortable I think. Is just not knowing if they grew plants or are just giving me old chalk from classrooms or what they are doing to me. Maybe they think I'm impressed that they have a long science name and know all the chemicals, but honestly that's just rubbish to me, if I don't know the actual production that went into the pill. I know that penicillin was originally taken from a mold, why am I so unimportant that I am not allowed to be told what's in this? (disclaimer: am not about to break into any medical production factories like a video game character, don't have the power)

Does anyone have any

Does anyone have any experience with toddlers and Keppra? I just found out that my almost 2 year old needs to be taking it. 

I went off Keppra 6 months

I went off Keppra 6 months ago and have been on cbd oil. If you want information on dosage of CBD compared to your dosage of Keppra or generic brand email me at michellem167@yahoo.com or message me on Facebook at https://www.facebook.com/michelle.mackey.716

My daughter was on Keppra for

My daughter was on Keppra for 9 months as a toddler. We did not have a good experience, after that point she was switched to trileptal. It controlled the seizures without the severe irritability. She was a totally different kid on keppra, we were both miserable. 

I am searching for

I am searching for professional help to stop using levetiracetam. Since I started taking this drug, my quality of life has been adversely affected. I am trying to locate a competent neurologist in San Antonio, Texas who has time to schedule an appointment. My own take on levetiracetam is it is a very undesirable drug therapy. There must be alternatives.

I hated it. I was constantly

I hated it. I was constantly angry, having outbursts, pushing everyone away, and I felt like I had no control of my emotions. I felt like taking my own life due to not being able to control my temper. I felt like no one was going to love me because I had become a monster. I wanted to prove to the ones that love me that my medicine changed who I was. I was told time and time again to just take vitamin B6. But why would I take a vitamin to balance my mood because another drug I was taking was making me unbalanced??? My anger and agitation was a side effect of the Keppa, not the epilepsy. So I stopped taking it. I consume CBD and cannabis reguarly and I have a medical marijuana a doctor. I haven't told my family that I've stopped the Keppa because I've been scolded too many times. My doctors weren't interested in how badly I wanted to get off of it. That is not okay with me. I deserved to have a conversation about what other medicines wouldn't flip my life upside down. I will never put that drug into my body again. Never. I'm doing much better now too by the way! 

are you seizure free? I also

are you seizure free? I also have MS and I have grand-mal seizures. Keppra seems to work for me, but I totally get the lethargy . 

I think because I was a woman

I think because I was a woman that my signs and symptoms weren't taken seriously and therefor left untreated for so long,I was taking pramipexole dihydrochloride three times daily, I Was on carbidopa levodopa but only lasted 90 minutes then wore off.I found that none of the current medications worked effective for me.I got tired of using those medication so I decided to apply natural herbs formula that was prescribed to me by my second P.T, i purchase the herbal formula from totalcureherbsfoundation. com, There has been huge progression ever since I start the treatment plan which will last for 15 weeks usage.all the symptoms and sign has begin to disappear .

I have been taking keppra for

I have been taking keppra for almost 2 months profilactic following brain surgery . They weren't too sure if I had a petit Male siezure so I'm on keppra. So far, I've been fine with it. It elevates my mood and I feel better. The only problem is I cannot drink alchohol 

I think because I was a woman

I think because I was a woman that my signs and symptoms weren't taken seriously and therefor left untreated for so long,I was taking pramipexole dihydrochloride three times daily, I Was on carbidopa levodopa but only lasted 90 minutes then wore off.I found that none of the current medications worked effective for me.I got tired of using those medication so I decided to apply natural herbs formula that was prescribed to me by my second P.T, i purchase the herbal formula from totalcureherbsfoundation. com, There has been huge progression ever since I start the treatment plan which will last for 15 weeks usage.all the symptoms and sign has begin to disappear .

I have been on seizure

I have been on seizure medicines since i was 6 months old. I have been on Keppra for 11 years now.  At first I really liked it.  I was the first drug that didn't make me feel like a zombie.  I could remember things I couldn't before.  I wasn't so tired and docile. I had taken Dilantin most of my life before that, btw they don't even prescribe Dilantin to women anymore due to terrible side effects to the woman and their children.  Anywho, I noticed I would get these outbursts of extreme anger for no reason.  As life went on, job became more stressful, and other unfortunate life events it got worse.  uncontrollable anger over time.  My fiance broke off our engagement due to the extreme mood swings caused by my medicine.  I was so mad all the time I started to feel like the incredible hulk.  Any little thing would set me off.  I was advised to try a new sister medicine made by the same company, UCB, It is very similar but with no rage.  I am in transition now but don't feel any different.  I am hoping that changes once the Keppra is out of my system.  I will say It worked for me. I have been seizure free for 11 years now.  However, I know if I ever want to have any sort of relationship or social life I can't have this rage inside of me.  I am a happy go lucky person by nature.  Complete departure from my normal personality.  It changed my frame of mind for the worse.  I thought I needed therapy, turns out I just need a new drug,

I Was on carbidopa levodopa

I Was on carbidopa levodopa but only lasted 90 minutes then wore off.I found that none of the current medications worked effective for me.I got tired of using those medication so I decided to apply natural herbs formula that was prescribed to me by my second P.T, i purchase the herbal formula from totalcureherbsfoundation. com, There has been huge progression ever since I start the treatment plan which will last for 15 weeks usage.all the symptoms and sign has begin to disappear .

No I hate it so much. I

No I hate it so much. I switched to it because my other med was making me think slowly and made my speech slur but Keppra was way worse. I became so depressed but wouldn't admit it to myself for several years until I could not physically swallow food anymore because I was so anxious all the time. I am now back on lamotragen. My speech slurs and I am so slow thinking but at least I don't want to kill myself :/. I don't understand why people want to do drugs.

Thank you so much for your

Thank you so much for your post. I'm trying to get through. I can rely on my hubby. I'm on 500mg morning and night and 150 am and pm. I have been getting side effects. I have been on keppra now for 45days. I am constantly on extremely highs and lows. I hope tomorrow will be when I can stabilize myself. I think it will help if I start keeping to my alarms for my pills. Thanks again for sharing your story. 

Thank you so much for your

Thank you so much for your post. I'm trying to get through. I can rely on my hubby. I'm on 500mg morning and night and 150 am and pm. I have been getting side effects. I have been on keppra now for 45days. I am constantly on extremely highs and lows. I hope tomorrow will be when I can stabilize myself. I think it will help if I start keeping to my alarms for my pills. Thanks again for sharing your story. 

Hi Darci,On Keppra, yes,

Hi Darci,On Keppra, yes, should it be? No.If you're still on Keppra, but the Tegretol was working, I would insist on going back on Tegretol. If your neurologist refuses, insist on getting a second opinion. Keppra was terrible for me and it sounds like you're having a similar experience.

That's 150mg Lamotrigine am

That's 150mg Lamotrigine am and pm. 

I wonder if your dose is

I wonder if your dose is wrong. I have been on keppra for over 10yrs now and it is one of only a few meds that will actually help my seizures.  Petites 10sec long every other 10sec with photo sensitivity and grand mals can be induced. Please talk with your doctor on checking your dose hun.

My husband has been taking

My husband has been taking keppra 750mg for nearly 20 years along with 200mg of zonegran. He use to take it twice a day but he asked the doctor if he could reduce to once daily about 10 years ago and has been fine. He does take alot of naps throughout the day but it maybe a combination of his brain tumor and the meds. That's the reason why he asked to take it once daily.  He has been seizure free for I believe over 15 years  and still doing fine with no side affects or kidney issues. 

Mary, here is what's in

Mary, here is what's in KEPPRA, any drug you want to know the ingredients of you can Google and get teh FDA verseion (NOT the wiki versioN!) alhtough they can be betetr for teh lay person you cannot be sure of the info bein gup to date and accurate! https://www.accessdata.fda.gov/drugsatfda_docs/label/2005/021035s040,021... 

I was told by my Dr that

I was told by my Dr that herpes (Human Herpes virus) doesn't have a cure even the World Health Organisation(W-H-O) said it that Herpes doesn't have a cure then i became suspicious and curious about this news and testimony of Alicia saying she got cured of Herpes from a clinic she mention that cure her permanently and she became Herpes negative without any side effect with their herbal natural herbs,my email is healthmedlab@gmail.com And at this point i have been suffering for a chronic Herpes for more than 10 years and this disease has restricted me from job opportunities and travelling out the country, that was how i gave them a try but the most surprising and amazing part,i got the medicine and do as instructed,today am no longer a carrier of Herpes but negative, you out there can also try your luck if you have been keeping and hiding this disease in your blood system.And they can cure any sickness and diseases.

HOW MY HEART DISEASE WAS

HOW MY HEART DISEASE WAS CURED BY DOCTOR AGIE KHERE I thank God for my life, I will says to the world to celebrate this great testimony with me, i never believe i can ever get rid of these horrible disease one day. My story and thanksgiving goes to Doctor Ogie Khere the powerful man who helped me to cure my Heart disease from my life. I don't know how to say this to everyone, Doctor Ogie Khere is a truthful man with high herbs power's he uses to save people's life. Last few days i came in contact with Doctor Ogie Khere emails on the internet which people gave much testimonies about his kind fullness work. So i decided to contact him quickly because this disease was almost on the last step of taking my life from me. I have tried all my best in life to get heal but nobody could ever help apart from Doctor Ogie Khere who finally help me to cure my Heart disease from me. I always amazed and overwhelmed when the doctor confirm that i am now healed from Heart disease, because i have tried so many Dortors, who go away with my money, i am an Heart disease negetive patient. I wish anyone who is sick today and wants a healing please i will kindly advice you to contact this man called Doctor Ogie Khere now at: doctorogiekhere@gmail.com To get this powerful healer full article and trust on his origination and references please visit him now again at: doctorogiekhere@gmail.com or you whatsapp +2347056024545 I thank God for my life today i am free from disease, may God bless you all Amen.

Re: Does ANYONE like being on Keppra?

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.

hated it, didnt control

hated it, didnt control seizures, and the side effects were the worst of any medication i have ever taken, could not handle stress, muscle tension constantly, angry mood all the time, paranoia, feelings of inadequacy and failure, depression, anxiety was cranked from my normal 110% to 1100% and it cost me a good job and a few friends in the proccess, was on it for 4 months and had several seizures and all these side effects. avoid it if possible.

Hi Stacey my name is Heather

Hi Stacey my name is Heather and I was just doing some research on this medication that I am now taking due to seizures. I read your story. I also have a meningioma. I have been getting the run around from doctors to weather or not what is going on with it and in the last 6 months I am now having new symptoms like seizures while I'm sleeping and loss of hearing and vision. I am wondering if I need to get it removed. So you had yours removed? Can you explain what happen to you and why you had to have surgery? So now you are having seizures after the surgery? Sorry for all questions but I am very concerned about my situation. I am now being referred to UC hospital but I don't know if I should wait for the referral cause it may take some time and my symptoms are getting worse 

Your Right.  ( The Way a Dr.

Your Right.  ( The Way a Dr. says, "may cause Depression' is like "REALLY???!!" it causes depression /  mood swings / Anxiety attacks.. whatever you want to call it i am sure depending on other medications and ....'  results ~ I just want to say you are not crazy..  - ' ' I think Zonigram is much better. - -  - It's easy to think about how much more needlessly grouchy=(realize that your being overly reactive to the fact you feel very very needlessly vulnerable,... (yeah sucky drug) so just relax- and keep breathing in cycles - ( stopping/holding will let it build up...)

I hate this medication! Ever

I hate this medication! Ever since i started on it 8/2016 I've been depressed, angry, withdrawn, way more tired than I've ever been which is saying something since i have multiple sclerosis, feelings of emptiness, anxiety, muscle cramping and muscle weakness, dizzy and disoriented, blurry vision, stuffy nose and almost no smell sensors anymore which is horrible because my sense of smell was my strongest sense, i hate the stuffy nose though it's constant and i feel congested ALL the time, my skin is disgusting now and I've gained so much weight ever since I've never been this overweight before! I have no energy to do anything and now i just don't want to do anything either. I don't even get dressed or do my hair or makeup anymore. I've cut off all friendships and family. I'm totally isolated and most of the time i just wait for the end to come for me. I used to be vibrant and energetic. Now I'm in so much pain nothing works at all. Ever since i started taking this my pain meds have stopped working too which makes it that much worse because now i really can't do anything. I've still been having partial seizures anyways so to me it's difficult. Granted, my seizures are NOT as bad as they were, not even close and i can feel the keppra working when they happen and it shuts them down, but it feels like it also blocks everything else too. I can't walk anymore and i can't breathe. Recently i was switched from one generic to another one that actually made a big difference and they're working way better now. No seizures since the switch and some of the discomfort is a little better but i still hate taking them. I want to go back to normal! I want to breathe again and feel like i have joy in my life because these pills block all of my joy and i just feel dead.

Fyi the switch ONLY happened

Fyi the switch ONLY happened a few weeks ago so it's only a matter of time before the next seizure happen.

I hate this medication! Ever

I hate this medication! Ever since i started on it 8/2016 I've been depressed, angry, withdrawn, way more tired than I've ever been which is saying something since i have multiple sclerosis, feelings of emptiness, anxiety, muscle cramping and muscle weakness, dizzy and disoriented, blurry vision, stuffy nose and almost no smell sensors anymore which is horrible because my sense of smell was my strongest sense, i hate the stuffy nose though it's constant and i feel congested ALL the time, my skin is disgusting now and I've gained so much weight ever since I've never been this overweight before! I have no energy to do anything and now i just don't want to do anything either. I don't even get dressed or do my hair or makeup anymore. I've cut off all friendships and family. I'm totally isolated and most of the time i just wait for the end to come for me. I used to be vibrant and energetic. Now I'm in so much pain nothing works at all. Ever since i started taking this my pain meds have stopped working too which makes it that much worse because now i really can't do anything. I've still been having partial seizures anyways so to me it's difficult. Granted, my seizures are NOT as bad as they were, not even close and i can feel the keppra working when they happen and it shuts them down, but it feels like it also blocks everything else too. I can't walk anymore and i can't breathe. Recently i was switched from one generic to another one that actually made a big difference and they're working way better now. No seizures since the switch and some of the discomfort is a little better but i still hate taking them. I want to go back to normal! I want to breathe again and feel like i have joy in my life because these pills block all of my joy and i just feel dead.

Re: Does ANYONE like being on Keppra?

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

I hate all anti seizure

I hate all anti seizure medicine . been on varyents for over 16 years .Have recently chosen cannibus vap pen to treat seizures.I have clonic tonic seizures. Keppra also made me very congested and have chronic flu symptoms, would have to purchase theraflu almost every two months . only have a seizure when I'm congested in one side and can't breathe adequately. Since cannibus vape pen im more calm and less angry and agitated. Don't eat as often and not sleeping all day , only sleep long hrs if im tired from work or stressed. 

I have been on Keppra for

I have been on Keppra for almost 3 months now, to treat the grand mal seizures that I just started having in my sleep.  Here's my experience:It does seem to stop my seizures.  Which is great.  Grand mal seizures, and their after-effects (confusion, memory issues, etc) are no picnic.The first 30 days side effects of Keppra were brutal.  Suicidal thoughts, aggression, panic attacks, bad headaches, fatigue, confusion, waking from sleep gasping for breath, insomnia.  Life did not feel worth living, and I wanted off the medication immediately.  I ended up on short-term disability because I couldn't function on it, but wasn't allowed to stop it.  The worst of those side effects passed after the first 45 days.  Part of that was learning that I need  to take the exact same amount of Keppra at exactly the same time every day, in order to minimize side effects.  This means no cutting pills in half (can't be accurate enough), and two alarms to remind me to take my dose at the exact right time every day.  I started at 500 mg twice a day, and have been upped to 1000 mg twice a day.  I also recommend increasing the dosage slowly (750, 1000, 1250, 1500, 2000) to reduce side effects.  I still feel some anxiety and fatigue on Keppra, but waaaaayyyyy less than initially.  I think it's manageable, and I'm hoping that after another month or two being on a steady dose (I've only been on my full dose for 1 1/2 weeks now) the anxiety and fatigue will disappear.They tried starting me on lamotrigine after the terrible first month of Keppra, and even 25 mg made me feel much better (it also helped with the anxiety from Keppra, which I still had to take until I was weaned onto the full dose of lamotrigine).  Unfortunately I developed the severe allergic reaction to lamotrigine and had to be taken off of it immediately (warning: stopping lamotrigine cold turkey caused two grand mals in the same evening).  However continuing to take lamotrigine would give me a lethal allergic reaction, so that was not an option.The big benefit to Keppra is that it seems to be much easier on the body/kidneys over the long term, which is one reason the doctors like it so much.  Essentially - it's safer... except for the possible increased risk of suicide in some (not all) patients.  So know that it can be a great drug, but it's not for everyone, and make sure you have good support for that first month in case you do feel super anxious/suicidal and need someone to talk you down and support you getting off of it.Good luck!

HiI am taking Keppra 500mg

HiI am taking Keppra 500mg (UCB) for about 4 years and I have no problems, no issues and especially no seizure at all :)I am really glad that UCB had came up with this drugThank you very much UCB :)

I have seizures all my life.

I have seizures all my life. ive been on tegertol about 40yrs and my new neurologist just took me off of it and put me on Keppra 1000 mg . its only been 3 days but im real jittery. is this normal

Hi,Okay I’ve been on Keppra

Hi,Okay I’ve been on Keppra for about 4 years now. I absolutely hate it. It’s has slightly lowered the amount of gran mal seizures by about only have 1-2 every 3 months. This is the only up side. I’m constantly irritated, fighting with my wife I’ve pointless stuff, constantly in a rage. They headaches don’t stop. This would be the first time I would admit I’ve been having suicidal thoughts for years while on these meds. Don’t even get me started on the anxiety:”( and depression. I’ve told my family doctor and my Nero but nothing, just upped the dosage to 6000mg due to and outbreak of seizures last month. I miss my old self. I used to love bringing smiles to people’s faces.... now there’s rarely one on mine. I feel trapped and no one listens to the one stuck in their own head. Thanks for letting me express myself. Name is Santino by the way. Wish everyone the best.

5/7/18  To Mary Skolnik:  You

5/7/18  To Mary Skolnik:  You can check with the actual  PDR for very detailed info on Keppra.  It shows its chemical compound, whats in it, etc. Also,  with each refill, by law (in CA anyway)  your pharmacy SHOULD give you an insert ... which contains the EXACT info/wording that is found in the PDR. Also, it is both the JOB/DUTY of your neuro AND your PharmD to  TAKE THE TIME & answer any & all questions  u   have about Keppra or ANY med u  are on!  Period.  Dont let them slack!! U can even call the drug manufacturer - generic or the original brand distributor - & talk to someone there. If u dont like Keppra ... tell your neuro.  There are several anti-convulsants  to choose from, but if Keppra keeps u seizure-free, why rock the boat?  I believe anti-convulsants work similar to the 4-5 catagories of psychotropic drugs in that they "mess with"/alter the 3 primary neurotransmitters in the brain.  Unfortunately, these tend to make many pts feel "wonky."  But ... one must weigh the side effects with the benefits.  Wish there were  better options.  (Im an RN, BS ... I dont have a seizure disorder, thank God, but I do have 11 other diseases - all untreatable -   & 4 of which are auto-immune. U have no idea what tired/exhausted/fatigued is until u have just ONE  AI disease.  :-(  Those 11 diseases are my cross to bear.)  

Also sleep is tough to come

Also sleep is tough to come by and my memory, balance and muscle spasms or jolts are terrible. 

Re: Does ANYONE like being on Keppra?

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.

Re: Does ANYONE like being on Keppra?

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. 

 

Re: Does ANYONE like being on Keppra?

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!

Re: Does ANYONE like being on Keppra?

**

Re: Does ANYONE like being on Keppra?

**

Re: Does ANYONE like being on Keppra?

Diane,

Our Mission

The mission of the Epilepsy Foundation is to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives.

 
24/7 helpline