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brian mattingly

kepra

does anyone know anything about kepra?

Comments

Re: kepra

I have been on keppra since may, and I have crazy moodswings, depression, I gained a lot of weight rapidly, memory loss, it basically was like I went through puberty again. It's been stressful, but I have been seizure free since. Going from having seizures everyday to none at all was a great feeling.

ASHLEY

Re: kepra

wow there seems to be a lot of different things goin on with keppra I was on it for about a year and my seizures became more frequent I guess it's different for everyone I'm on lamictal now and it's great the only thing for myself though is instead of being drowsy I have insomnia, but at least I'm not a zombie anymore like I was on keppra and dilantin. Everyone noticed a huge difference in my mood they said I seemed like I was back to my old self and that I was more talkative and aware of things since being on lamictal. My doc was constantly increasing my dosage of keppra because I was still having seizures, but I guess meds are different for everyone some might not work for you and some will you'll know when u get the right one

Re: kepra

gratefulmouse---when I read these comments....I get anxiety attacks....but I go in to see what is happening to you guys.....when I read that people are on 1500mgs in the morning and 2000mgs at night..of keppra...I cant even imagine that....Im 57 yr old woman now...weight ...too much actually....195.....at 5 ft 3.....ok with that in mind...this is what I take....500mgs in the morning....and 500mgs at night.....that is it......for seiezures....now when i had my last seizure..in january of this year.....it as my 3rd ever.....I had one in 1997....at 46 yrs old...and then....one in 2006 at 55 yrs and then one recently in jan like i said...at 57 yrs old...well, the only reason I think i ever had seizures...or had one seizure is because i was trying to get off of an antidepressant called desipramine....I had been on it for 10 yrs before I decided to get off...I should have never been put on it...because  it was actually given to me because I was allergic to...PREMARIN.. an estrogen....I had a hysterectomy and back in those days every woman who had one had to take estrogen and the newest one out was PREMARIN.... well, its made from horses and Im allergic to horses....no one knew and they were convinced I was depressed...so after nearly killing me by making me take premarin...I was put on the antidpressant...and told to stay on forever...well,then I found a female specialist and she took a blood test from me and said I was allergic to PREMARIN...and to get off......well, that should have been all there was to it....I should have been put on an estrogen...not an antidepressant that would  cause me to have seizures later on in life.....I see law suit there...but who do you sue..the government....for not doing their job..that was wilford hall med center on lackland afb....I was put off for 5 months..they would take me into a shrink when I came to tell them i couldnt take what was happening to me....i didnt know I was allergic to the PREMARIN....but they could have if they had tested me and gave a ........!....now after all these years later...I am stuck with this dissability because of the airforce....they try to say I had the precondition...for having seizures...wow...i believe that like a hole in the head......I never had a seizure or any incling of one until iwas 47 and was getting off desipramine.....each time I was treated ....the meds caused me allergic reactions...as far as dilantin....it was a nice drug...but dang it...I broke out in this rash...and I was hot all over with this rash...so I called the hosp and told them and they said ok ..get off now...so they tried me on nuerontin...well, then i really had stomach problems.....so I gave up and took nothing and didnt have a seizure at all...period....but my stomach was a mess so I got back on the antidepressant because I figured that is what caused the stomach problem and I was right ..it was..I was taken off the last bit of it too fast....

so...the second time....I was ...guess what....getting offf desipramine again..wow....that was hard to figure...so my second seizure is when i figured it out..that it was getting off desipramine....so i was put on keppra ..I took the 500mgs in the morning and in the evening....I had stomach problems..blowing up like crazy and sometimes diahrea exploding gas...but ..I didnt have any mood probems at all...I was at the second seizure on half the desiprmaine dosage....so after awhile I figured..shoot why not get off the desipramine while on the keppra ..that would protect me....so....I slowly very slowly did ...and also off the estrogen they could finally put me on....and then slowly after that I got off keppra...I felt kind of dragged out as the keppra kind of pumps me up a little....and then I was ..ok ...wonderful...back to my old self..with no meds...i never took any meds ever...at all until I had my hysterectomy at 37 and was put on the antidepressant....desipramine....well, after getting off all themeds...after about 4-6 weeks I had my last t hird seizure.....well, i didnt take anything righ taway...and didnt see a dr until 4 days later...and didnt have another seizure...who knows....I may have never had another seizure.....

instead I was put back on keppra ...well, this time while getting on keppra by itself I had mood swings like crazy...it was awful but I stuck with it because I remembered when those side affects tappered off and went away.....well, my dr wasnt happy with me just taking 500mgs in the morning and at night..he wanted me on 1000mgs in the morning and at night...so 2000mgs a day....I tried to get up there..adn the side affects were unbelievable.....I mean......I had things happening to my body that was unbelievable....its weird...but..I had severe diahrea..it came out whether I wanted it to or not and my bowel movement ..or water movement was yellow and smelled like baby poop...weird....and then I lost weight...lets see ...25 lbs in abt 3 wks....then i began to not be able to get out of bed....I had muscle wasting and then bone wasting....well, I kept calling the dr and he didnt answer my calls ...so finally my husband took me there and  he put me on lamictal....needless to say...I didnt sleep for 3 weeks....I was ready to kill myself...so I went in and was put on trilepytal....that only worked for 6 hrs then I started having stomach cramps so bad..I was put on xanax...so putting someone on another addicting drug to cover up the side affects of one....

needless to say...what was left of me...after 4 months being bed ridden....I put my foot down and said I want to get back on keppra.....and then i will start my antidepressant again and then maybe get off the keppra...so he said ok fine...well, we moved from there and I saw another nuerologist who said she wouldnt see me if I didnt take the keppra....and...that she never ever makes anyone take more drugs then necessary....and that 1000mgs a day of keppra is fine...she doesnt do that kind of dosing as one size fits all kind of thing..or its not going to work unless  you take this much..or its not theraputic if yo dont take this....so....with all that  happening...getting on and off drugs and then taking keppra again at 500mgs in the morning and 500mgs in the evening...I havent had another seizure...I feel if I were it would have happened....well, nothing is set in stone..my dr here said there is a test they can do..instead of an MRI....THERE IS AN MRS....where they can see where the seizure is coming from or anything at all in the brain that is different even chemicals...wow that is something.....I am on the keppra like i said with the 500mgs twice a day and also going down on my desipramine..I found that taking the so called theraputic dosage of the desipramine made me feel weird...sometimes different medicines enhance each other...so I will I t hink slowly work my way off desipramine...I have done th at before and was on the keppra and felt fine on the keppra by itself...

but know this...some people as myself...getting on or off keppra ..raising the dosage or changing the dosage..does and can cause you to have problems with moods....but...when the body acclimates to it...or gets use to it...that does clear up....Im on it now and dont ahve any problems.....Im not sure w hat Im going to do ...but I may even stay on the 150mgs of desiprmaine.....or get off it depends....but I would like to know how an antidpressant ...getting off it can cause this.......also....I did discover something else...and that is keppra binds to other medicines....so when I got off the desipramine....it had bound to keppra ...which means it was still in my system via the keppra so when i got off keppra it was like still getting off desipramine...as of now I take the two meds 2 hrs apart....I use to take them together ...I didnt know any better....but we shouldnt ahve to be guinea pigs...and we should all be offered the MRS...INSTEAD OF just playing with our lives and sticking us on just any kind of medicine for lengths of time like myself and nearly killing me with the side affects of it...when you get on something you have to take it awhile before the side affects wear off.....but by then its too late and you are sick as a dog.....something is got to give.....i want that MRS OFFERED TO ALL OF US FOR FREE...WE ARE NOT RESPONSIBLE FOR OUR CONDTION AND IN MY CASE THE MILITARY IS RESPONSIBLE FOR MY CONDITION ...BUT I NEVER KNEW THAT UNTIL THIS PAST TWO YRS........I am praying often about this....for me and for you....God bless you all 

 

Re: kepra

Brian:  Are you currently on Keppra or Keppra XR? I took the regular Keppra for almost two years and I have really "weird" side effects.  I was REALLY dizzy and upset to my stomach at times.  I was also on Lamictal.  From talking or reading this site and others I know it really does help with reducing or eliminating your seizures if they are temporal lobe seizures.

Do you have an Epilepologist? (a Neurologist that treats only seizures) An Epilpeologist is able to treat your AED's and know exactly how the chemicals affect your brain. They target seizure focus instead of overall symptoms of your seizures!  I highly advise to get one as soon as possible.  If you have a learning hospital such as a university hospital may be a good way to begin. Just contact their Neurology Department and don't give up.  Also please contact either your state or local Epilepsy Foundation. They should be able to assist you in finding one. Most are very familiar with them. Don't be afraid to switch doctors for goodness sake. Be like Nike and "Just Do It."  (;

I found mine by a LOT of phone calls and by searching the internet.  It took me a long time but I had lots of time one my hands. 

So- you may want to ask your current neurologist about Keppra XR or extended release AED. If you have just a "regular" MD please get an Neurogist or even better a epilepolgist.  I really hope that's helped you.  It really is your responsibilitly to take control of your seizures as quickly as possible. Don't let life pass you by because of this. 

I really hope this helps you. I will pray for you that you will be able to have the strength and wisdom to aquire  more knowledge regarding your E. I've found by being proactive rather than passive helped me. 

 

Blessings to you,

Pam Sullens

Re: kepra

Brian

I have been on Keppra for about 10 years. If I had any side effects they all happened when I was coming off my old medication and geting on the keppra. Keppra have been one of the best medications I have taken for seizure control. It has lowered my seizure count along with the time I am in the seizures. It has reduced the time it take me to focus (get back to normal). I went from having several seizures a week to 2-3 a month. It may take your doctor time to get you on the right dosage but once you get there you should have fewer seizures and the time to focus will also be less. I have taken both Keppra and generic keppra and both work. Original Keppra was and is expensive and my insurance plan was changes so I got a RX from my neuro since he too wanted to know if the generic worked. It did and has but don't get the generic unless you check with your nueuro.

Side effects will hit a small percentage of people. Depending on the side effects they range from 5-12%

Hi Brian,

I take Keppra for years, but unfortunately it didn't help me very much. Therefore my neurologist hat to combined it with a different medication, otherwise, I'll get terrible depressions, very moody etc. Take care.

nelly

Re: kepra

My experiences with Kepra result after 20 years of being on Dilantin therapy. My neurologist suggested a chance in drugs when I started experiencing back problems as a result of long term Dilantin use.  My Neurologist started me on Kepra and the result was not good.  The drug (Kepra) was found to actually induce seizures (I had 4 seizures) in some people from what my doctor said.  After being taken off off Kepra, I was then given Epilim to try out. Epilim was actually worse than Kepra only in the case of side effects. Although my seizures were controlled, I was having poor vision, hand shakes and terrible cramps.  After weaning off of this drug over a period of 6  months, I was slowly put back on Dilantin.  The only change now is that I have Calcium supplements and Vitamin D given to me every day.  I only wish that treating epilepsy was more of an exact science instead of a trial and error case.

 

Re: kepra

Out of Dilantin, Lamictal and Kepra, Kepra was my best med.

Keppra

Please read my discussion!

Re: kepra

Hi, I am new to posting, but Keppra gives me some concerns. I am on the generic, so I do not know of any iron content. I am exhausted almost all of the time. I am not sure if it is the Keppra doing it. I have severe hydrocephalus. I think that could be the cause as much as Keppra. That is the worst of having multiple conditions, right? One is never sure which is the cause or what should be the proper treatment. I have no drive until I get angered. Then my drive is usually destructive and misplaced. I can not get or maintain a decent career. I am licensed as an attorney. The memory gaps and problems with memory recall make that difficult. I can not dazzle anyone with brilliance when the brilliance will not come! I am also licensed as a teacher. There are not jobs available. I have three children -- 13, 8, and 3 years old. I can not help them build their future when I can not save money for their college, etc. No insurance, getting by on part time jobs, my wife has to work, too. I am sick of the whole situation. caused by my stupid hydrocephalus/ seizure disorder. the frustration is worse than the condition or any side effects of the medications!

Re: kepra

Ive been on October for six months now after coming of Tegretol Retard. The drug is going OK for me, i have had no seizures for four months and my auras have decreased.

At first when i went on the drug it made me very hyper active, i wabted to go out and dance and go jogging, do extra time in work...all sorts. That wore off after three weeks. Since then I have the suspicion that I'm loosing some of my hair epecially on my forehead (recceding hairline).  

 

Re: kepra

Keppra has been working great for me; I switched to it from Dilantin. When I was on Dilantin, I was really out of it and first, and as the months went on I noticed that overall I just felt slower and dumber (not so great for a college student...) I haven't noticed any bad side effects and my seizures have been under control.

Re: kepra

I was on Keppra for about 6 months. I am not fond of it. It seemed that it made me think abit nutty. I would be traveling down the road in an MG..(Long Auras, and I had gone over 6 months without a seizure, so technically it is legal to drive in Arizona. I do not drive now because they started again after I changed from Keppra...Anyway, I found the worse problem was the thinking process. I would be driving down the highway in a very small car and see a wall ahead of me, and then think to myself, "I wonder what it would be like to smash into that wall going about 60 mph. I seemed to care about nothing, and living was one of them, so I suppose this would be depression. Well after this occurred a couple of times I kind of got scared as hell and went back to the Dr, where she took me off Keppra and on to Lamitral...The seizures are comming now about every two weeks for the last few months and everytime before 8 am on a monday...strange...but it happens...

Re: kepra

20-30% of people on keppra become nasty. I am I am in that group

Re: kepra

Hi. I have been on keppra for about a year and a half. Being only 19 years old and diagnosed with juvenile myoclonIc epilepsy, keppra was the first medicine my neurologist prescribed me. I was to take two 500mg tablets daily, one in the morning and one at night. I remember starting this medicine on a Wednesday night, the Dr had told me to take 2 500mg tablets, giving my body a days worth of meds all at once. I remember feeling so sleepy and relaxed, it reminded me of being on vicodine when you feel your nerves relax from the too of your head to the tip of your toes. The next morning I wake up and take only one pill and about half an hour later I was fast asleep, for the entire day. When i woke up it was time for my bedtime pill so I took it and again slept for the night. My mom tried to get me to eat something in between the time I woke up to the time for my next pill, but I was so out of it I didn't want to eat, all I wanted was sleep.
By Friday I was beginning to get the hang of it so that morning I jumped in the shower and as I got out I had the feeling of passing out so I sat on the bathroob floor just in case I did faint. Sure enough I did but the only thing I remember was hearing myself scream and wake up to my knuckles white as can be. I called my mom and she was home in 15 mins from work. She called my Dr and explaned to him what had happened. He told her because of my lack of appetite and activity my body took a shock when I was in the shower which caused me to pass out. He changed my dosage from 1000mg a day to 500mg a day so I take half of a pill each day and so far it has been working.
Hope this helps with what your looking for
-A

Re: kepra

gratefulmouse---ok ...I have been on keppra now since about May 2008....I also got back on my old antidepressant..and I mean old ....its one of those way back in the day kind...tricyclics....I was going to get on the keppra and then get on the antidepressant and then get off keppra and stay on the antidepressant. remember my story...I was put on the antidepressant because I was allergic to PREMARIN...an estrogen given to women back in the 80's because it was touted as natural and the only one to take.....well, I had side affects so bad it nearly killed me..but when I went in to see the dr over a period of months nearly wasting away...it was decided I was depressed....so eventually I gave in and went to a shrink and got on the antidepressant desipramine....then it did cover my NO SLEEP AND NO EATING....that is why I was nearly dying...after a surgery that is life altering...not being able to sleep and heal that was so bad....

I then decided to see a female specialist as I was hot from the waist up to my head always...and my moods were bad even though I was on the antidepressant....she did a blood test and then called me immediately and said get off premarin as it was killing me...I was allergic to it...or allergic to horses....so i did and began to feel a bit better but back then we had to take an estrogen so I started on a trek to find one and I finaly did find one...estrace..within three days I was fine....but I was told to stay on the antidepressant and the estrace....

 well, 10 yrs down the rd I wanted to get off the antidpressant....and started half way off and that is when I had my 1st seizure.....I was allergic to dilantin and other seizure drugs and I was sent home with nothing..i didnt have another seizure....but my stomach was a mess .....so I got back on the antidepressant and stayed on it for another 10 yrs and decided to get off and half way off again I had my second sezure.....i was put on keppra ..that was the first time....so I was kept on keppra 1000mgs and was on half dose of my antidepressant....I felt ok...then I thought why not get off all the way from the antidepressant...while on the seizure drug...so I did and then off the estrace....because  now they are sayign its not good for you...so i did then I got off the keppra...probably should have waited more time ..but then got off keppra and then with in about 4-6 weeks....another seizure and in texas..voila....that is the magic number.....my first seizure was when i was 47 yrs old....so i figure Im blessed because i raised "5" kids before all that happened....thank God for that...

well, I figured it out because it happened to ME....not any dr...but I was treated in houston the supposedly great place for hospitals and the dr there ..dr chu  nearly killed me...tryign me on different  meds...and each one causing more side affects then the last one...he started me on keppra what I took before ...and I was ok at the 1000mgs.....then he upped it...when he did that....my side affects turned into  nightmares and he kept telling me that i had to take the theraputic level of 2000mgs at least that much....so I did and once or twice it felt as though my brain was exploding...well, I got over some of the symptoms but not the weakness..I was so weak that my husband had to nearly carry me in to see the dr ...he wouldnt return my calls....I had to call so often i know he began to think I was a pest and I was nuerotic...

well, i lost 25 lbs in 4 weeks...and over 4 months became bed ridden....the dr took me off keppra after taking it 6 weeks...he then put me on lamictal and that caused me  not to sleep..at all...I became desperate...i started myself on a really small dose of xanax to sleep and told the dr....then he decided to put me on trileptal...and it only lasted 6 hrs a day and I took it 4 times in 24 hours and if you know about tryleptal..you know you are onlly suppose to take it twice a day.....it nearly burned out my kidneys....so after 4 months of this and being bed ridden as a result ..i went into my family dr who I coudnt see because I was bedridden and couldnt move..a blood panel was run and they found that I had serious muscle wasting and then bone wasting..it moved to my bones....and I had all kinds of bad things happening to my body as a rresult..my husband had to help me walk ..he worked at MD anderson cancer center ...1 1/2 hr away ...so seeing me waste away he decided to quit his job....

he did that and was at home for awhile watching me waste away...I called his mom one day and she was in emergency after she was found wasting away...from taking coumadin .. a blood thinner..and she is still on it...and she looks like she has bruise marks all over her body and she has wasted away so much if she stands sideways you almost cant see her...but she believes in her dr and thinks they are god...and does what they say irregardless of what is happening to her...so I decided to move near her so she could be with me trying to get well....i told her what i thought...I had gone into see my dr chu again in houston and told him why not try what was tried and true....and said i would take keppra again but only 1000mgs and then get on my antidepressant since being on it didnt cause me seizures....and then get off keppra....

when i moved and found a dr she said that in texas..she couldnt treat me unless I took keppra or a seizure drug....because if i had an accident she would be liable...and that is true....she would be....I had prayed about what i should take and I had a blessing about what it should be ..at the beginning and I was told that i should take keppra and that eventually I would overcome the side affects and it would be as if I was on nothing at all...when i prayed about the antidepressant ....i got no answer....so when the new dr here did tell me I had to stay on keppra....she also said why would she put me on more than 1000mgs of keppra....she only puts larger people on larger doses and she also looks at what works on everyone...each person is different...she does it like that....and then she sees me every 3 months....she cares more....since my prayers led me in this direction I will do it ...so far all my side affects are gone....i am now trying to get off my antidpressant....I was on 200mgs and it was competeing with the keppra....and as i went down on the antidepressant I felt better....and so now im ok....sometimes it is the amount of medicine one takes....and each one is different...the side affects of keppra do wear off.....different meds can affect it...and the only reason I had any stomach problems at all was the outter coating of the 500mg keppra....it is coated in iron oxide....which upsets the stomach really bad..so I take two 250s twice a day...and it works.....I pray that God watches over me and those of you who are suffering and whose children are suffering also...so you have peace of mind in the Lord....and please pay attention to your dr ...if he isnt doing you any good or listening to you ..or like in my case...never returning my calls ....I wouldnt call unless my symptoms werent bad...and it was obvious even to my husband who I had come in with me to see the dr ..and m y own husband sided with the dr and told me just to pay attention to the dr and not dissagree or fight him...so i did...and I let it happen and then within 4 months I didnt look like me....i was looking like a person who was almost 100yrs old..and Im only 57 .....I missed out on my sons birthday...I missed valentines and easter ...after It went from january to May....I put my foot down..i had to muster up whatever energy I had ....and said NO MORe ...I told my husband off and said whose side are you on and can you see what is happening to me...my seizure didnt do as much damage as one BAD DR....after I got on to the keppra 1000mgs I felt much better...I did have problems getting on my antidepresant as it affected the keppra....but keppra was the only drug I could take that would let me get on teh antidepresant....I went t hrough some depresssion and I wasnt depressed...but it was the two together at first and then I over came symptoms from both and i had to do it alone as I was moving...and didnt have a dr yet.....when I saw one here and she said I didnt have to take more than 1000mgs...because that is the amount that works for me....I knew instantly that she was the one God meant for me...even th ough she had to be tough and tell me you have to take the meds until at some point they come up with a way to find out how my seizures came about...

she didnt know me and didnt know about the antidepresasnt....but I began talking to differnet people and we speculated on it...antidepressants affect the brain obviously....it goes in and puts a block on whatever to stop depression and mind you I have had depression in my life in the past and never took any antidepressant at all..it was tough as it was major depression and anxiety disorder...but I wasnt put on the antidepressant for depression as my problem was being allergic to PREMARIN..in the first place....and i took it for so long it became part of my dna...joke ...I think my body got use to having it there for whatever reason...and when I tried to get off ...my brain wasnt functioning the same way and when it tried to act on its own...it created a seizure....so ....you  might say...I have a law suit that could be done here....it has altered my life in such a way as I cannot drive ...imagine after all those years driving and driving school buses....driving all over the world as my husband was military....then suddenly not being able to when i  need to...well, Im  hoping that the keppra takes care of it and so far it has...even while I was trying all the  medications and then back on keppra....I never had another seizure....I feel blessed by God for this....anyway...Im not going to sue ...sue what the government....actually no one knows that these things will happen...even the company that makes them...medicines that is...

so  PLEASE BE CAREFUL AND WHEN YOU TAKE MEDICINES...READ THE SIDE AFFECTS OF THEM...THEY ARE REAL...NOTICE ON TV HOW THEY SAY REALLY FAST THE SIDE AFFECTS OF THE  NEWER MEDICINES THEY ARE COMING OUT WITH....WELL, TAKE THEM SERIOUS....also...if  you feel bad at all..and its been over 2 weeks when taking a medicine ....get with your dr and if he doesnt llisten..find another one...its hard because you have to start over and tell your story over and over...but if you want to live..do it....also..I tried supplements for differnt things..and know this....SOME ARE OK....BUT THEY  HAVE SIDE AFFECTS AS WELL...AND EVEN THOUGH IM AN ADVOCATE OF "PREVENTION"......WATCH OUT FOR THE SIDE AFFECTS OF SUPPLEMENTS AND HERBS....AND TOO MANY VITAMINS....NOT GOOD....BE CAREFUL OF WHAT YOU DO....AND PRAY ALWAYS FOR ANSWERS....SOMETIMES GOD KNOWS WHAT YOU ARE GOING THROUGH AND HE SEES THE GREATER GOOD OR THE BEGINNING TO THE END ...IT WAS MEANT TO BE THAT THIS HAPPENED TO ME...OTHERWISE I MIGHT HAVE NEVER LEFT THE HOUSTON AREA.....God bless you all...life is a trip we each have to travel....

 

Re: kepra

I used to be on keppra except it made me depressed and made my hair fall out, so i had to switch to lamictal instead

Re: kepra

just joined the forum 2day ^_^ started on keppra last night, no problems so far, although i seem overly energetic, or overly tired ill switch from one to another, im only taking 500mg along with llamatical at the min though, so thats probably just me overreacting, hoping i wont gain one of the more serious side affects, rage, depression ect, my neuro did warn me, but im willing to give it ago. nothing else has worked and ive been having tonic clonics for ten years now, and abcences daily which is a bit of a bummer considering im desprate to drive=[ buttt im only 17 ive still got abit of time =]

aha.

 

Loves Holly x

 

Re: kepra

Does anyone know if the rhinitis and sinusitis caused by Keppra is manageable?

Re: kepra

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Re: kepra

I started taking Keppra when it first came onto the market. Although my seizures are not yet controlled, Keppra helped more than any drug I had taken before or since. I have experienced no side effects from it. Some people complain of sleepiness, and others have complained of what they call Kepprage.

Re: kepra

I'm taking 2 of the 500mg Keppra XR twice daily, along with 3 100 mg Vimpat twice daily. This is the best if been since on 27 medications or mixture of them since'74 and an unsuccessful surgery in '96. Seizure frequency is now 1 per 4 months, for 30 yrs. it was 1 every 3-4 wks. Sure I feel that I'm not normal, just because I'm sick in the head with epilepsy. But I've never suffered anything that's unusual  Timothy Baldwin

Re: kepra

Hi

I am on Keppra and I have had no bowel movement problems. I take 1 in the morning and 3 at night. It helps my seizures. My fingernails do grow fast, but I just clip them more often. No big deal. When my neurologist first put me on Keppra, he told me that I would have to take a vitiman B complex  pill once a day. It has helped my seizures.

Re: kepra

I was weary when my neuro suggessted Keppra--in fact I had turned it down once before with my neuro in Phx.  I decided to give this rx a chance--I was told that the chance of mood swing was minimal, and wouldn't last.  I should have listened to my instincts.

I expected the typical AED side affects: sleepiness, disorientation, appetite change/nausea--we all have been through these.  I have never been such an emotional mess in my life.  I am a terrible person--I have never been so mean and I honestly can't live with myself any more.  When I am not being a terror, I am sobbing uncontrollably.  This has affected both my personal and professional life.  I turned down a promotion at work because "I didn't feel like dealing with it."  I kicked my roommated out because he made too much noise.  Most days I fight with myself to get out of bed--I have never been like this.  Keppra drug is not the best choice on the market for me, and what is sounds like, many others.  Please choose wisely before taking.

I would glady take the brain-dead symptoms of topamax over these symptoms.

Re: kepra

What can I say good about Keppra, uh nothing... I've been on Keppra maybe a year and granted I haven't had a seizure in that time, so thats your pro.  My moods swing like woah, I get deep bouts of depression, severe tiredness, my hair was thinning from the various seizure meds so I'm not gonna say Keppra contributed to that at all...

Re: kepra

I am on Keppra

It works for me with other medicines. My neurologist told me that I had to take Vitamin B Complex with it, to avoid a lot of the side effecs.

Re: kepra

We must help and support each other

 

I am on Keppra. I have had very few side effects. I have my fingernails and toenails growing faster but I can juct dlip them more.

My neurologist told me to take Vitamin B complex with Keppra. It works to get rid of some the side effects.

 

 

Re: keppra and rage

I have been on Keppra for six years. I am also on medication to control the rage that comes along with taking Keppra. There aren't a lot of options I can switch to because I am still young and want to have children one day. There are only so many meds I can take.
Since you're a guy, I recommend asking your doctor if you could take something else. Like I said, Keppra causes rage in me! I take other medications to control the rage, but if I get pushed far enough, nothing can control it. I am aware of it, but I still can't control it.

Re: kepra

They switched me from dilantin to kepra 3 months after finding out i was epileptic. I have now been on this medication for two years will be 3 in July. The medication has not affected me in any way except i have not had a seizure which is good. If you were to ask me I would say suggest ti to your doctor. I've never had any bowel problems but I do tend to get moody and the doctor said that is usual for a younger person taking the medication. I think you should talk to a doctor if your having problems with it .

Re: kepra

Hi: My 14 year old son has been on Trileptal for three years (900 mg am and pm).  He has been having seizures every 6 months more or less and his doctor wants to start him on Kepra but I am scared after reading all the comments.  Are the side effects really that bad?  Thanks

 

Re: kepra

Keppra has caused me severe, debilitating depression.  Keppra XR causes me depression AND insomnia.  Does pretty good controlling seizures.  But, what good is pretty good seizure control if the drug creates debilitating depression and insomnia?

I'm back.....

gratefulmouse----wow ....I have a story to tell you guys.......here goes....I never had epilepsy or seizure disorder...I have commented about that in earlier posts....I had my first seizure at 47 yrs old...its not old age onset...haha...I have discovered by it happening 3 times what it was....I was put on an antidepressant desipramine....a substitute for an estrogen.....sound crazy....it is crazy....its called dr not knowing what to do and deciding ....aw she is a woman..you know..hypochondriac...or she is depressed because she had a hysterectomy....I had one at 37yrs old....I was trying to get pregnant...I wanted a little girl so bad....mind you I had 5 kids..one girl my first and then 4 boys....I wanted to finish off with a girl...but it wasnt to be....and that is life....but..I was in no way depressed abt that...I was to ill after the surgery for that...I was just trying to survive....but I gave in and went to see a shrink civilian...as I was seeing military drs my husband being airforce....and took the antidepressant....."desipramine".....it helped me sleep and eat...and believe me after 6 mos of not doing either I was fit to be tied esp after having a life altering surgery....well, it helped both but it didnt help the sudden menopausal moods....now aint that a rip...an antidepressant not helping the moods...anyway I wised up and went to a female speicialist and she did a simple blood test and found that I was allergic to the estrogen they put me on...you know ...PREMARIN.....its made from pregnant mare urine..piss whatever...and I was allergic to equine....horses.....and it was killing me...causing my body to reject my own human estrogen....no wonder I was a mess...but I was already on the antidepressant which helped with eating and sleeping but....didnt help with hot hot hot upper body..I stayed hot all the time...and had bad depression and other body things.....well, the female specialist tried me on the estrogen patch and I was allergic to the adhesive....I guess by now you can tell Im a sensitive person...I wish I werent....and then the female speicalist put me on estrace..a simple estrodiol ....and....within 3 days....I was once again a human being...well, with that I was told to stay on this little cocktail....desipramine and estrodiol....for the rest of my life......well, after 10 yrs....I said....why stay on a stupid antidepressant...I dont need that..before I had the hysterectomy I had two episodes of major depression andpanic disorder..and did it without meds at all...so I was on 200mgs of desipramine the antidepressant and went ever so slowly down to 100mgs....and was on that for awhile then one day at work .....bang......on the floor with a grand mal.....I was taken to the hospital and shot up with dilantin...and before I knew it they had taken me off the desipramine the antidepressant....they didnt taper me off they jerked me off 100mgs ....just like that....well, the dilantin protected me I suppose from more seizzures esp after what they had done in emergency...you never jerk anyone off a med like desipramine ever....you taper off....well, I didnt know any better...I was 47 yrs old then....I went home and 7 days later.....I broke out in a rash and called the hospital...I  had fever and they said oh no take no more dilantin and we will call in nueronton for you...another seizure drug....well, I started on that and had stomach problems...I blamed it on the nerontin but really it might have been from the hospital jerking me off that last 100mgs of desirpamine...I was told later it was ..so  I dont really know if the nerontin made my stomach act up orn not but I went into the hospital and complained about it and they said to me

I dont know what we are going to do with you...and they sent me home with nothing at all. I went home and went to bed. I was afraid of having a seizure as I was on no meds ...then I was put on some weird newer type antidepressant ....why I dont know..but it made me sicker...so I got off it and by then my stmach was fit to be tied....so I said forget this and got back on desipramine...the antidepressnt originally.....then went to a shrink who guided me back on the 200mgs I was on to begin with....and had no seizures for another 10 yrs.....so when I was sent home after that first seizure with nothing....I had no seizure....and when I got back on the antidepressant....I still had  no seizures.....well, I stayed that way for another 10 yrs and then one fine day I was llistening to all the hubub of natural health remedies and wanted to do a body cleanse and got off the antidepressant again..or was half way off....again and then .....bang.....on the floor in my bathroom ...I woke up in the morning and my head was flicking side to side....scared me I coudlnt control the head movement...and then I laid my head back down on the bed and tried to call to my husband who was home but he couldnt hear me....I had to pee first thing in the morning..but waited and coudlnt wait any longer and slid off my bed and got into the bathroom and that is all I remember....my  husband said he heard this loud whoop from me...I must have yelled or something and he ran upstairs and found me on the floor face down near the toilet and I had peed all over myself...

he cleaned me up and called 911.....they came and got me ...and I was in the hospital and they shot me up with keppra.....because I was still on 135mgs of desipramine....I only took 1000mgs of keppra....500mgs in the nmorning and the same in the evening ...i took this for over a  year...then decided to get off the antidepressant because I was on a seizure durg and after all it might be because I was getting off....you know like xanax...if you get off to fast of it then you have a seizure....I never got off to fast of any drug...but I did get off the antidepressant and then got off the estrodiol I was on and then slowly got off the keppra.....

well, then about 4 weeks or so I had another ....bang....on the floor...this time I was home alone...I woke on the floor face down with stuff dried around my mouth and my mid stomach area hurting and my back in the same area ...mid back...I felt like someone stabbed me...I realized what happened and crawled to the bathroom...and then got back into bed and called my husband....he came home and took me to emergency and .....they put me back on keppra....

I was fine for the first 1000mgs....moody and dizzy and weak....but it was subsiding...then I saw a nuerologist and he said  it was time to take more...even though I wasnt having any more seizures...he made me go up and I went up slowly.....but as I went up I was s uppose to get up to 2000mgs ...I would get near that amount and the m oods got so bad ..it was bad..and then other symptoms much worse ...I slowly over came them ...but one of the side affects never got better....I was weak..and the weakness got so bad I was not able to move ...I also coudnt eat and noted that my intestines began to coil up and my stomach got really tight....so I began to not eat and didnt even care to eat and lost 25lbs within the first month...I was literally wasting away....I complained on the phone alot as I coudnt get out of the house...I was bed ridden by then for 3 weeks.....my husband finally brought me in and had to almost carry me in I was so weak and lost so much weight and I found out later my muscles had wasted and it was taking it from my bones....

so the dr said ok we can see you cant take keppra....so he put me on lamictal.....that freaked me out as its for people who are bypolar....but I agreed and within a short period of time....I coudlnt sleep...I also couldnt eat even worse....I began to become a n one person...I caught myself sitting up in bed during the day staring at the walls and the venetian blinds....as I continued to waste away and not sleep I became desperate for sleep.....I was exhausted and would almost fall asleep and my body would jump up....one night I was ready to jump off the roof and Im not that kind of person...so I prayed hard and my mind thought of some old xanax I had...because all of the seizure drugs cause anxiety...which can cause you not to sleep and there is a difference between anxiety that you feel  naturally then anxiety caused by meds.....anyway i took it and it did help some.....but wore off...then I got off of it...as i only took it at night and a small amount..

I went in to the dr as I wanst feeling good because of not sleeping and one more side affect..this tightness around myl rib cage and burning under that area which could have been one of th glands in that area..I told the dr and he said ok we will try trilectal...or however its spelled...he took me off lamictal right away...not tapering off...when he took me off keppra I had to taper off keppra while getting on lamictal...so I had withdrawal from keppra while having side affects of getting on lamictal...what a nightmare..

anyway, so I was put on the trileptal.....I was to take it in the morning two pills and then in the eveing two pills....I did that and started with one pill first though....in the morning and the evening and I still coudnt sleep...then when I started the two pills morning and niight I began to sleep and was gratefull for that ...but then I noted that the affects of the trilectal only lasted 6 hrs...then my ribs began to hurt and burn...so I took more two more and I was ok then 6 hrs later again the same thing...pain and burning in the rib cage area...so I wound up taking the dose 4 times a day....I called my dr and left messages telling them what was happening and I began to waste away and get weaker and no one called back...I finally had to call smoeone else about it and I was finally called back...telling me how dangerouss it was for me to overdose....I had no idea I was over dosing so I told th en if I didnt take the trileptal I get so ill and they started me on xanax..in the middle...so .25 four times a day....and I began to correct my dosage but....I felt my kidneys hurting so bad for the over dosing and told them I wasnt going to take anything that can mess a person up that much and have to take xanax for the side affects that was crazy...well, they were searching for what else to put me on...and I told them

I prayed and prayed and was prompted to get back on keppra but on a smaller dose....like the one I took when I had my second seizure...1000mgs for the entire day...500 morning and then at night....and I wasz going to get back on my antidepressant desipramine .....it seems that I took it for so long that it has become part of my dna....I was going to get on the keppra because I was already taking seizure drugs and didnt want to have a seizure getting off them quickly...so I got on the keppra as it usually works well with other medication...I had taken those two together before...so he agreed....and got me back on keppra ....then I had to see a shrink to get me back on desipramine as my nuero woudnt prescribe desipramine for me as he said he doesnt do that...

so I had to convince my shrink to do it and he did...mind you he had tried me on zolopft and it caused me to feel depressed in the morning and shake the rest of the day.....when this all started I had NO depression or anxiety....but 4 months of pure hell ....bed ridden for 4 months.....after awhile I began to get my energy back ....as of now Im on keppra 500mgs morning and at night and on 200mgs of desipramine.....Im suppose to be on 2000mgs of keppra but .....I didnt want to go through what I originally went through in the begining....

I was worried about myself as I had lost so much weight my skin was falling between my bones and I was coiled up like an old woman and could hardly move without help and had no apetite at all...none....I have since gained back some weight and gotten my energy back...I went in to see a reg dr and had a blood panel testing done

 I was told.....that while all this was going on....my cholesterol the bad one went to 200 all by itself as I have said I coudnt hardly eat anything...and my  C-reactive protein, quantative....went up to 5.9....that means I had problems with inflamation .....like heart problems and arteriosclerosis....and ...I had very very low vitamin D3 in my body..you need that to absorb calcium in the bones and the rest of the body....they did  a bone density test and it was so bad .....I didnt have enough sun in my body from being bed ridden and who knows the medicine itself could have been robbing my body of bone....I was near death....I had to take matters into my own hands and Gods advice and guidance...

well, my husband quit his job to stay home and care for me and as a result we are moving to a differnet city to care ofr his mother who also was wasting away because she is on coumadin for thick blood...something I was told also..my blood was thick...all this happened as a result of taking all those meds for seizures...and Im loosing my huar...i took keppra before and it did cause my hair loss and when I got off it grew back in and now Im on it again and my hair obviously came out and everyone noticed it....

well, Im moving and have to see a different neuro when I get there and since my husband quit his job he lost his insurance for health ...we are retired airforce so we now rely on tricare and had to change drs again becasue of that so I see the new neuro this coming week...while we are here.....I will have to tell him everyting poor guy..

I want to let you all know something.......the nuerologist I saw ....when i had my third seizure..I went in to see him and started to tell him my history and he said ...no stories just tell me  your symptoms...I asked my husband in for my apointment to support me when I was to tell the dr my history...and instead of my husband supporting me ..he supported the dr ...and agreed the dr dont want to hear a lot of stories..so they shut me up and made me take all the meds and increasing the keppra......I want you to know I told my friends and they said they couldnt believe that a decent dr wouldnt want to hear a persons medical history....which I find to be true......I suffered for 4-5 months nearly dying because of listening to a dr who wou ldnt listen to me....IF HE HAD LISTENED TO WHAT i HAD TO SAY...HE WOULD HAVE HEARD THAT GETTING OFF MY ANTIDEPRESSANT CAUSED MY SEIZURES AND COULD HAVE MAYBE RESEARCHED IT MORE THOROUGHLY....LIKE MAYBE IF I STAYED OFF IT , I MIGHT NOT HAVE ANY MORE SEIZURES ...ITS MIGHT BE A TEMPORARY THING....OR JUST GET ME BACK ON IT LIKE FROM THE FIRST SEIZURE....I WAS SENT HOME WIHT  NO SEIZURE MEDS AT ALL AND I HAD NO MORE SEIZURES AND GOT BACK ON THE ANTIDEPRESSANT AND HAD NO MORE SEIZURE FOR 10 YRS UNTIL i DECIDED TO GET OFF AGAIN......WHAT A JERK....IF THIS NEW DR DOESNT LISTEN TO ME ..HE IS OUTTA HERE...WE PAY FOR OUR TREATMENT....WE SHOULD BE ABLE TO DO WHAT WE WANT ALSO....I HAVE SMARTED UP....GOD BLESS YOU ALL.....MAY GOT WATCH OVER YOU AND HELP AND GUIDE YOU....

 

 

 

 

 

Re: kepra

I've been on Keppra for about 7 years and have had few problems. I can't seem to sleep very well along with the extreme mood swings though. So far it is the only medication that I have found that seems to actually work. I have taken Tegratol, Dilantin, Depakote, and none of them either worked at all or the side affects were so extreme that I had to stop taking them. As long as I keep my diet in check(I also have Type II diabetes), get enough rest, keep my stress levels reasonable, and take my Keppra I am usually ok.

Re: kepra

I am happy on keppra.  I have been on it for a year now and like it.   I was allergic to dilantin, depakote made my hair fall out and gain 100 pounds, lamictal was ok but keppra is so far the best for me.  No problemd for me on keppra and it works with my other meds which is great.   Teal

severe bloating with keppra

gratefulmouse--I responded abt keppra causing severe gas in the abdomen. it can cause cramps and diahrea which is unusual as it mostly is suppose to cause constipation. however, I did reserch and found that two of the pills the 500mgs and the 750mgs...have iron oxide...500 is yellow iron oxide and the 750 is red iron oxide...iron oxide is ...iron and if one is sensitive to iron it causes these symptoms....severe gas and bloating and diahrea...I found that the 250mgs and I m not sure about the 1000mg having iron oxide or not as it doesnt describe it as well as the rest. I called and am having a perscription filled for the 250mgs about 240 of them to see how it works on my stomach...I talked to my family dr and she said it was a form of iron and if a person is sensitive to iron as I am then it does affect them in this way...I will start on the 250mgs within the next two days and let everyone know how it goes as far as the gassy stomach upset and I also emailed the ubc.com company which are the people who make it and told them about it and if this is indeed the case then they can change the coloring to not include iron oxide so one more side affect can be taken off. believe me I kn ow about all the side affects....nervousness, which makes in the morning my arms shake...or I shake in the morning first thing until I take the keppra....then Im ok for awhile then as i eat I start feeling a little down and then as the day goes on I feel better and towards evening im ok ....but I take my pills at night and it takes me awhile to get to sleep...but who knows it could be the iron....we shall see ....I also have the mood swings..ie depression, crying anxiety, fear, I was weak in the beg and also am dizzy still as I went down from 2000mgs to 1500mgs and then going up at around 1800mgs...and each time one changes mgs it affects the mood and everything else...then....i have taken it as I stated before and I was fine emotionally and weakwise and dizziness went...but in the early morning I am shaky...until I take the pills...so...God bless and pray that He shows you what to do and gives you answers,,..and the Holy Spirit guides you in your health matters...gratefulmouse

Re: kepra--hair loss oh no

gratefulmouse---oh man..hi again Im the one that posted regarding the gassiness....man I thought I could escape loosing my hair...my family has a history of women and hair loss and men too....and now im on something that causes it..maybe I will still be different or special haha as my doc said...when I told him my nuero that I wasnt sleepy like it said I should be and some other stuff they said I was special...maybe I will grow hair....fat chance huh...oh well, things could be worse...God bless

Re: kepra

I've been on Kepra for around 6 months now and it makes me really drowsy throughout the day, my doctor said it's a side effect that is normal but will eventually go away the longer you've been on it so I'm hoping that it will.  I was prescribed 1500mg a day.  Also make sure you never miss a dose! I made that mistake and ended up having 2 seizures in one night.

Re: kepra

HI

I was recently put on Keppra about 3 wks ago but put on Keppra XR last sat. I have a horrible attitude, and get sad on and off. The medication has worked wonders for my morning commute. I am no longer disoriented and I can actually see the real size of my eyes being that I can open them well without the light bothering me. I would really like to stick with keppra xr but if this irritiability, and depression persist I have to ask for a change.

Re: Hi Brian,

hi brian, we just took my daughter off of kepra. to many side effects, shes 8 years old and still on two meds . i just hope she grows out of them. veronica

Re: Hi Brian,

I was on Kepra....I am so glad I am off that stuff.

 

My wife threatened to divorce me and my kids were scared of me because I was so angry all the time on it. 

Re: Hi Brian,

I was on Kepra with Trileptal and had basically every listed side effect (weight gain, mood swings, etc.) except thoughts of suicide.  It also fogged my mind to the point where I didn't really realize I was having those problems until I had been off it for a little while and my mind cleared.

Re: severe bloating with keppra

Hello!!

I was diagnosed with e when I was 18. I was put on 1500mg of Depakote. Over the years I have gotton use to the side effects of this unhealty drug and has kept me seizure free for 9 years on and off (I would mess with my levels to try and loose weight causing my seizures) until last sunday and I havent touched my levels I have learned my lesson from the past.  I have gained 30 lbs when I started the depakote and I feel like I have put my liver through hell for no reason.  My doc decided to put me on Keppra 500mg twice a day along with 1250mg of the depakote.  So far I feel okay just tired but my auras in my arm will not go away.   I dont know if I should give the drug more time or maybe its not working.  Cant tell???  The auras are becoming painful.  I have nocturnal seizures so I take clonapan before bed and I sleep like a baby so I dont have panic attacks anymore.   How long does it take for this keppra to kick in??  My auras are driving me nuts!!

Re: kepra

Hi Brian,

I have been on Keppra now for about 8 months. It has had a bit of a negative effect on my chronic depression, but I am on anti-depressants now, which have seemed to help. Although my seizures are not yet fully under control, I have had fewer negative side effects with the Keppra than most other meds I have taken.

Hope all is well with you,
Barbie

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

Re: Re: kepra

thanks barbie. it seems to have made me sleep a lot, but then again there are usually a couple days after an episode where i want only to sleep. i used to have them about every 6 mo. an my most recent was after a 14 mo. layover. they put me on kepra on 1/13, a friday no less, after my last episode. anyway, just looking for info. thanks!

Re: Re: kepra

Are you on Keppra by itself, or with other medication?
Sweetsue

Re: kepra

Hi ive been on keppera for about a year and i did at first get alittle tierd but it wared off and i do say that i dont have much side effects with it eaither except sleepy but that comes from all the meds i take on top of that like antidepperession meds. But i do now alot of people are happy with it.

your not alone!

Re: Re: kepra

Hi there,
I've been on keppra for 3 years, I started taking it when it was very much in the trial stage in the U.K. but i know this sounds incredible but once it got bedded in with my other meds (epilim and clobazam) i have never had another seizure again in fact i've got more energy than ever and my memory has improved. Plus as a bonus i get very spaced out trippy dreams which are like an added extra. Sure i still get the bad days depression-wise but i had those before i was even diagnosed, but I've got excellent support staff whenever i need them plus after having only just joined all you guys I feel as though i can help and support others which can only be a good thing.

Re: kepra

I joined because my daughter has epilepsy. Her seizures were finally controlled when she was put on Keppra. Recently she started having some extreme mood changes...anger screaming etc I was totally freaked out. Called her Nuero after looking at possible side effects and described what was going on . Didnt really want to loose the siezure control. So he started her on Lexipro for the moody problem so far so good. My daughters name is Nikki she is 35 and has had seizures most of her life with a big increase in seizures at puberty onset.

Re: Re: kepra

Hi I am 23 and I take keppra I have awful mood swings (my poor family) I also do end up with some "kepprarage" I have heard they give out mood stabilizers, not sure how I feel about adding another med to the cocktail but I am glad its working for your daughter. Congrats to her being seizure free!!!

~*Samantha*~

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