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drowsinessworse with Keppra

Hi everyone- I am new to this forum and I hope somebody can give me some insight. I have been on dilantin for 26 years and now my new neurologist is having me switch to Keppra. I am still waiting for the results of my bone density scan. My biggest problem is the drowsiness and I haven't even started my full dose yet. I can barely make it through the day without caffeine in my system. I started drinking coffee the same year I started on dilantin because I couldn't stay awake in school. It didn't help that my first class of the day was physics!  Anyways, I have to drink twice as much coffee in order to function normally and I want to know if anyone has had side effects that persisted after going off there original medicine? Any advice in combating drowsiness while on AED? Thanks, nancy

Comments

Re: drowsinessworse with Keppra

Hello Nancy,

Sorry to hear about your side-effects with Keppra.  My neuro wanted me to try Keppra...after about 4 weeks, we decided that it was not the med 4 me.  I could barley move I was so tired...literally.  At first, I just thought it was the side-effects of beginning a new drug, but they didn't get better; they became more intense as the doses increased. 

Have you talked to your neuro about your side-effects?  Have you talked to your doc about other possible meds?

Is this only med you are taking for your E?  My doc added the Keppra to the Tegretol-XR that I was (and still am) taking as adjunvtive therapy...Keppra is an "add-on" med used with other AED's.  http://www.keppra.com/pc/home/default.asp

I hope it all works out for you and you are feeling back to normal soon.

Geosmallz

Re: drowsinessworse with Keppra

Keppra is the only med I take for seizures; 1000mg twice a day. 

My neuro told me that Keppra would make me sleepy, but it's strange--Keppra actually keeps me from falling asleep, and having that "can barely move" feeling.  Maybe it's because my particular kind of seizures *are* like falling asleep, and Keppra counteracts that.  I never have that debilitating grogginess and head-snapping "micosleep" type things that I had for so many years without knowing what it was.

Deb

 

Re: drowsinessworse with Keppra

hi there,please excuse me but i am new to this site and dont know what i am doing.I have been on keepra 1000mg twice a day,i always felt tired  but i always thought it was from not enough sleep.i am on dilantin now and it doesnt work for me at all.I think i would rather go back on the keppra,i do drink a lot of pop,i think thats how i can make it through the day.No matter what meds my dr puts me on they dont work after about 5 or 6 months cause i get use to them.I need help on here cause i dont know what i am doing so if someone can email me at sktl4@yahoo.com and explain to me how this works it would be great for me,i am  not good when it comes to the computer at all.i would love to talk to someone one on one about this cause i am going through a hard time right now,thanks for listening to me Lisa

Re: drowsinessworse with Keppra

This is a great thread. I've been on keppra for over two years now. I've always been tired with it and can't seem to stay awake past 10pm. I get 8 hrs of sleep and I'm still out of it. I might try the vitamin B6.

 

I think the worst part of my side effects are feeling like I have lactic acid build up in my arms all the time. My hands are so shaky and sometimes I cannot hold a pen or write. I feel like I have problems with blood sugar levels too. I get hyperglycemic very quickly. The onset is fast. 

Re: drowsinessworse with Keppra

I'm sorry you are experiencing so many side effects. My doctor finally took me off the Kepra and now I am on Trileptyl (oxcarbazepin). There are still the drowzy side effects but nothing like the Kepra. There are a lot of antiseizure drugs on the market so maybe you can try a different one with less severity. I have been going to a great neurologist in metro Atlanta. I wish you the best of luck! Nancy

Re: drowsinessworse with Keppra

Unfortunately, each one of us afflicted with Epilepsy have different tolerances to the myriad of medications available.  I fortunately found that Keppra made a major difference in my life.  I was on Tegretol for about 25 years which really left me feeling exhausted everyday after waking up.  My neurologist suggested I try Keppra (with my other meds) and it was like day & night.  Suddenly I was seeing things clearly for the first time.  It made me realise that I'd been a zombie.  I could think clearer and verbalise my thoughts much quicker.  I found that by leaving coffee was a very good decision as well, because my seizures have dropped from having 1 per week to being seizure free for the past 9 months.  I also used to drink at least 16 cups of coffee a day with 6 teaspoons of sugar.  I gradually lowered this until I eventually cut out coffee.  I believe that caffeine does have a very negative effect on any person, but we suffer even more.  Good Luck with your new medication and hopefully you also stop having seizures.

Re: drowsinessworse with Keppra

Hello dear,

How long has it been since you were diagnosed with epilepsy? Your symptoms sound very much like my daughters. She was only just confirmed last week after developing symptoms in mid August. She's barely 18. She's been bounced through a variety of meds in addition to a 2 1/2 day stay in the hospital for constant EEG monitoring. At any rate, while adjusting to various meds, she's had quite a few breakthrough seizures that she is never aware of, until she realizes that she feels really sore. My concern is the feeling of lactic acid build ups that you are experiencing. Are they more apparent during certain times of the day? 

Best regards and wishes

MaTa-Dah!

Re: drowsinessworse with Keppra

 

Hi,

I can sympathise with your situation because I too am experiencing extreme drowsiness with Keppra. Today I ceased my midday dosage of 500mg but replaced that with a morning and evening dosage and am really struggling to get through the day. I am yet to find a AED that does not have side effects though and am now considering surgery as I really find that the effects of the AED is impacting too severely on my life.

Have you discussed the drowsiness with your doctor? With regards to the bone density, I was told that all AED's have an effect on bone density and therefore it is wise to supplement your diet with Vitamin D tablets. I was also told that too much caffeine was not a good idea and infect I should drop coffee from my diet all together.

Let me know how you go.

Re: drowsinessworse with Keppra

Hello, I have the same problem.  I however take Zonegran, Lamictal & Keppra 1500 2x's a day.  I could sleep all the time.  Caffine...is a must for me too.  I have always read the side effects on the inserts & I suffer from the "not so serious" all fatigue & the Zonegran is a little confusion but the combination of the 3 are so draining.  It disrupts my sleep pattern enormously.  I'm tired all day & if I sleep than at night its like insomnia.  The doctor said that the medication is more of a benefit even with the side effects.

Re: drowsinessworse with Keppra

I take most of the same meds as you.  In addition to Zonegran Lamictal and Keppra, I also take Lyrica and Lorazepam. I am the same way I am always tired.  I fall asleep at work.  Thank god my boss uderstand.  I have to stay late to get my job done.  I do not get to play with my kids because when I am home I am napping.  No matter how much caffiinie I have it doesn't help.  My doc actually tried putting my on provigil in the morning and that did not help.  My balance is all off I cannot even ride a bike.  My vision gets blurry at times.  I tell my doc and he says we will wait and see.  I am afraid my vision is going bad and I will fall and really hurt myself.  I have already fallen once in the shower and broke my pinky.  I do not know what to do.  I ahve been on Keppra for a couple of years and my seizurse are still not under control.

Re: drowsinessworse with Keppra

Thanks for everybody's response. I was on Keppra for almost a month and then my neurologist switched me to trileptal. What a huge difference! The side effects that I feel from these two drugs is like night and day. It got to the point that I could barely function even with all the coffee and power drinks I was consuming.  It was just not a quality life. I think there may have been some paranoia too and that messed with my head a little bit.

Anyways, so far so good with the trileptal and I hope it stays that way.

Hopefully my bone density test will be normal. I will definately discuss with my doctor about taking vitamin D and folic acid supplements.

 

Re: drowsinessworse with Keppra

I am 60 years old and diagnosed with seizures 2 months ago after being found unconcious in a parking lot.  I have had a number of falls in the last year that my old PCP and a teaching hospital ER blew off----"be more careful"; who's beating you up"; "too much stress in your life" etc, etc.  After being taken to a different hospital by ambulance, they did a complete workup and discovered seizures (No answer as to why at my age yet)

Long story short:  Kepra has put me on my _ _ _.  At 750 mg twice per day I feel fine (no seizures that I know about) but when increased to 750/1000, I sleep 12 hours a day and could sleep more if possible.  I also get unsteady and have to use a cane so that I don't fall.

  I am widowed and must work every day.  It's really hard.  Caffeine hasn't helped.  Doctor thinks I'll get used to it.  HAs anybody gotten used to it.  If so, how? and how long did it take?

Cathie

Re: drowsinessworse with Keppra

Hi Cathie-I never got used to keppra. Actually for me it got worse. In addition to being tired all the time I think I was actually getting paronoid and delusional. Keppra was just not for me. I started on Trileptyl in May and after several months and a couple of adjustments in my dosage it seems to be working fine. There are some side effects that I could not find listed on any website so I think it's good to communicate anything unusual or bothersome to your neurologist. This drug does cause me to heart palpitations and anxiety attacks so I have been trying to eliminate caffeine from my diet and see if that helps. My doctor does not want to keep switching drugs on me. I hope you have an understanding and thorough neurologist. I was referred to mine by my primary physician. Best wishes, nancy

Re: drowsinessworse with Keppra

I've-gone-crazy-Sue

Hi Carhie...I was diagnosed with Epilepsy at age 60...I am now 63.  I take 500 mg Keppra every 12 hours, & although it completely eliminates my seizure acitivty, it makes me groggy and stupid.  I already have brain damage from the 2 years I did not take meds (I thought I had Alzheimer's rather than seizures).  All those seizures really destroyed a lot of my brain synapses.  I just got fired from a job for the first time in my life because I could not concentrate or remember.  My Neuro won't refer me for Disability because he says the State of California does not recognize Epilepsy as a disability...what crap!

I don't think you will get used to eppra's side effects.  My Neuro says because all anti-seizure meds work by supressing your nervous system, they all make you sleepy and unable to concentate.  Join the unhappy crowd...

Sue

 

 

Re: drowsinessworse with Keppra

I'm 36 and have been on Keppra for the past 14 months. I definitely had the drowsiness/feeling half-drunk side effects, but grew used to it after about 6 months. I don't drink alcohol or take any kind of cold medication. Caffeine is limited to two cups of coffee in the morning (otherwise I wouldn't be able to start my day).

Since switching to generic Levitiracetam back in late November, I feel like I'm back to square one and noticed it was getting worse. Tired, dizzy, and shaky. I avoid driving for the first two hours after I take my dose (500mg at 9am and 9pm). I called my neurologist about it on Friday, and am returning to Keppra brand today.

Good luck to everyone involved.

 

Re: drowsinessworse with Keppra

I'm 21 years old and have taken Keppra since June, Urbanyl since October and Zonegran since December. I am tired all the time. I drink coffee everyday and even nap most days. I feel like I'm missing out on my own life. I'm tired almost all the time. All of my friends are out partying while I have to take a nap and drink lots of coffee before heading out, and sometimes I can't even make it because seizures keep me home!

I'm sick of being tired and my seizures are not fully controlled. I do know that Depakote made me a lot more drowsy and am thankful that I am not on that. That is my last resort I think.

Re: drowsinessworse with Keppra

hey

 i have only just found this website now 2 years later and not to sure if you will get this messgae, but im 21 too, ive have only just started using keppra and im tried all the time, every time i get home from work i have to sleep and dont wake up till like 3 in the afternoon!

can you tell me if it now works for you?, i went out drinking the other quite alot and didnt no that you cant drink on keppra as i have just started only been on them around 4weeks and i thought i had been spiked ovbilsloy it was a seizure, as mine a quite mild. but would realy like to get them under control as im going traveling in october.

would love it if you could give me some advice. thanks.

Have you tried Vitamin B6 with your Keppra?

Sounds like an old wives' tale, but give it a whirl. Take a Vitamin B6 supplement with your morning dose of Keppra and see if it takes the edge off the Keppra sideeffects. Worked wonders for me, and I was skeptical, so I don't think it's a placebo effect. :)  

There are so many people who swear by the Keppra + B6 thingy that there have even been scientific studies done on it, and they corroborate the effectiveness.

Also,  be patient. Your brain will take four or five weeks to adjust to medication changes, so don't judge Keppra too quickly, and also don't rush the dose increases. I went from 250mg to 1000mg 2x daily slowly over the course of 2 years.

Re: Have you tried Vitamin B6 with your Keppra?

OH does it ever. I religiously take 4 Vit B Complex everyday and the benefits are fantastic.

Re: drowsinessworse with Keppra

Hi Nancy,

I have been on Keppra for 5 years now.2500mgs was working well for me,and as for beeing tired,defently!I'm also on 2 other meds.Back in April of last year,i had to make a change to my meds and now i'm 4000 mgs of Keppra per day.I'm i tired,YES,but i over time,the tiredness became easier to handle and now its not to bad,and i use no caffine to stay awake.It took some time,and i tried to get enough sleep,even change my life style to get it.I know my situation is different than yours,thought it might worth a try.

Good luck, Steve

Re: drowsinessworse with Keppra

I had a stroke in June 2010, followed by a small seizure in November 2010.  I was put on 250mg of Keppra twice a day, which I was told to take in the morning and the evening. The doctor said it was more as a precaution and I certainly haven't had another seizure.

I moved to London and started to get hay-fever like symptoms in January 2011.  I also started to be very drowsy, which I put down to the allergy.

I was spending more and more time asleep on the floor.

My neurologist didn't like this, and suggested that I take both tablets just before bed.

That was ten days ago and I haven't by any means felt as drowsy at all. In fact most days, I've not been drowsy at all. Over a period of four hours, the highest score I've given it, is just 3/10 and that was after a day when I didn't sleep well, due to unrelated issues.

Re: drowsinessworse with Keppra

I've some what adjusted to Keppra. I take 3000mg and take them all at bedtime. Which is always good for a drug that may cause drowsiness. My experience with the generic Keppra about put me under! The side effects were so much worse in every way and felt relief within 48 hours of changing to the name brand.

I take B6, Biotin and Vitamin D3 daily with my regular daily vitamins. It does help, also I cut back to only one cup of coffee daily, no soda or caffeine otherwise, I started drinking a lot of water which seemed to help, but I don't know that you can shake that physical drowsiness, at least I can't. Of course everyone is different and you should always ask your Neurologists before adding a supplement to your routine. For me, I can't live without them, especially the D3, this is so important for muscle fatigue, and mental too!  

For my allergies, because I have a ton of them, I take a non drowsy allergy pill. If I would take Benedryl or Zyrtec I would be asleep in 10 minutes and sleep all day!!

If Keppra is making it difficult for you to function daily, you could ask your Dr. to have you switched to the name brand if your not already, giving your insurance will do so. My Dr. just sent in an order, (I was also allergic to a filler in the generic), and it was done.  

Okay so sorry to ramble on, so most importantly take your Keppra at night, give yourself time to adjust, and if your Dr. says your good, get on a few energy boosting vitamin's to help you out. 

My best to you. 

 

 

 

 

Re: drowsinessworse with Keppra

I've been on Keppra XR (only) for 7 months, since my last grand mal triggered by excessive amounts of caffeine.  That seizure nearly killed me as it happened from the top of the stairs.  I was very lucky that I wasn't seriously hurt although I felt like I had been hit by a car for a couple of days.  I only get drowsy for about an hour around 4-5pm.  I take 1500mg daily at bedtime.  I thank God for Keppra!  It has been my long awaited help.  I had a small amount of hair loss in the beginning but that could have been due to the quick weight loss as well.  My weight is has been holding for about the past 2 months.  No unusual mood swings or depression, although I find that I am a bit quicker to cry over sad events and thoughts.  I wouldn't consider myself depressed though.  I still enjoy doing my usual activities and spending time with my friends and family.  I can say that I drink about 3-4 cups of 1/2 caffeinated Folgers coffee (equal to about 2 cups of regular coffee) per day and that's it!  If I need a boost at the sleepy 4-5 pm hour - another cup of 1/2 caf.  Keppra XR and caffeine do not mix.  I love my coffee but the 1/2 caf keeps me from getting the shakes and doesn't interfer with my sleep.  If you become shaky, it could be due to low blood sugar because you haven't eaten well and caffeine kills hunger.  Sodas have a lot of caffeine as well.  Everything in moderation....listen to your body.  I wish you the best and keep us posted on your progress.

Re: drowsinessworse with Keppra

I've-gone-crazy-Sue

I enjoyed reading your comments.  I was put on Keppra XR but I started having seziures again so went back to 500mg b.i.d.  I have days when I'm not quite as sleepy and "stupid" as usual, but I do have to drink a lot of coffee just to stay awake.  I too mix 1/2 decaf with 1/2 regular.  I have been drinking so much coffee I now have heartburn! 

Well, if it's not one thing, it's another...!

Best wishes,

Sue 

 

 

Re: drowsinessworse with Keppra

 Is anyone else experiencing muscle fatigue on Keppra? 

 

"Anyone who lives within their means suffers from a lack of imagination." Oscar Wilde

Re: drowsinessworse with Keppra

I had a little muscle fatigue and general clumsiness/lack of coordination, but only for the first week or so.

I've stepped up the dosage very, very gradually, and my epileptologist is convinced that is the key to having reduced/no Keppra side effects.

Re: drowsinessworse with Keppra

I've had muscle fatigue on all my meds, Keppra included.

Re: drowsinessworse with Keppra

Hello! My
uncle of Campina suffers general epilepsy from14 years, and I want all my heart to him
and help him and others that I know everything I can do not to have
seizures. Can you give me a tip what I can do, or if there is a cure for something.

Re: drowsinessworse with Keppra

I think Caffeine just makes it worse. It might wake you up for a little bit, but then you crash later. You have to drink more and more because you build up a tolerance. Caffeine can also make seizures worse. The thing is that the meds make you feel bad, and although you can counteract this for a short while with caffeine, you are actually more tired when the effect is over. I just decided that I am going to feel bad sooner or later and I have to deal with it. If you stop drinking caffeine for a while you might find that you actually have more energy, because your energy level stays level rather than fluctuating up and down. When you drink a lot of caffeine you need it to feel good, but when your body is used to getting along without it, you feel better without it.

Re: drowsinessworse with Keppra

 All fellow Keppra club members,

Perscribed Keppra 1000 mg twice daily.  Got an almost immediate positive effect from medication.  Felt bettter right away.  General Mood improvement for first two weeks.  Effectiveness of  Keppra seems to have declined slightly (only compared to initial very high mood improvement for first week or two).  I have been on Keppra now for 1.5 months, I assume that I am likely at a nominal reaction level now that my body has adjusted to medication.  Initially had the dizziness that was indicated on the medication for about 2 weeks but that subsided as well.  Still some mild equillibrium issues but mostly I have what everyone else here has talked about - fatigue or tired symptoms, similar to .5 mg's of Xanax that I took.  My fatigue is manageable sometimes worse than other times but always seems to be a bit of sleepyness present.  Has controlled my seizures (diagnosed with Complex partial temporal lobe). 

Sometimes have feeling of elevated brain excitement that lasts 2-4 seconds (twice in last 2 months) but never develops into a seizure episode (manageable does not affect ability to function).  

Most notable result of Keppra was that my mood improved almost immediately and it has declined slightly but overall still better mood than before diagnosis.  Drowsy for certian though.

Keppra seemed to have a positive effect on my depressive mood problem.

Dart

Re: drowsinessworse with Keppra

Any advice in combating drowsiness while on AED? Thanks... - No, no advice. Limited comments. Words like drowsiness - alertness - can be difficult to define medically (my view). It's my understanding that what you report about Dilantin - that Dilantin often has more of a neutral impact on drowsiness vs some other medicines - has been reported before by others. Regarding drowsiness - alertness - two medicines which are known to temporarily reduce drowsiness and increase a kind of alertness in some users are caffeine and Provigil. The concept of drowsiness - fatigue - need for a higher energy level - often comes up in discussions about brain injuries, sports concussions, some of the epilepsies, even some of the ADHDs but it can be difficult to find discussions which provide remedies to the need for more endurance/stamina. Sometimes the Krebs citric acid cycle is mentioned but bottomline, the two medicines - caffeine and Provigil - regularly are mentioned although neither medicine works for everyone.

Re: drowsinessworse with Keppra

I've been on Keppra for a few weeks now. The drowsyness I find is worse after becoming mentally exausted. The only thing I do to combat the drowsyness (other than watching my stress levels and trying to give myself a break between tasks) is Tae Kwan Do. It helps so much with my mood swings and drowsyness. It tires out my muscles but leaves me felling alert and happy and energized. WAY BETTER THAN A GYM!!

Try it, there's no way it wont help a little 

Re: drowsinessworse with Keppra

I second that !!! I do Kyokushin Kai 3 times a week and it has honestly been my saving grace, It really combats the Kepprage and keeps me awake at work during the day. I love my martial arts even more now.

Re: drowsinessworse with Keppra

I've been on Keppra for about 8 years now. I take 3500mg/day, but am also on 500mg/day of Lamotrigine, so the two together make me ridiculously drowsy & I'm still having fits. To make matters worse, I've had to start taking a small dose of Frisum am & pm, for the time being, so I can barely stay awake!

Quite common with taking Keppra or Lamotrigine is small hair loss, which is only really noticeable when washing or brushing your hair. It doesn't come out in clumps luckily - though all medication effects people in different ways.

Keppra for me I believe is the strongest drug out of the three that I'm on (with little side effects that are managable), but could be worse off for others.

I tried Topiromate for a while, but my speech started becomming slurry & it was difficult to process my thoughts into actions as quick as i usually would. The tingling around my mouth was wierd to say the least.

Keep on with the Keppra unless something drastic happens & certainly try an acitivity that keeps you concentrating, for example I'm an instructor at Sea Cadets, so my thoughts are always on the go!

 CJ

Re: drowsinessworse with Keppra

i'm the counterpoint.  i prefer the siezures to the side effects of keppra when i was on it as well as many other drugs.  hope you find what's right for you.