new to forum with question about keppra

[jayboi]

hi all. well i have had complex partial seizures since i was about 10. i am now 26 and i have tried pretty much everything out there. For the past couple years i have been on epival and lamictal. i get the occasional seizure about once every 3-4 days. I saw my doctor today and he told me to get started on keppra tomorrow. I have been reading about keppra and have found nothing but negative results from them. i am very sensitive to drugs i think. my max i can take on lamictal is 250 and epival 1000 because i seem to get doublevision with higher dosage. so i was wondering on others who have tried keppra and their opinions. sorry for the long thread. thanks.

 

[darkmarkshark]

Keppra has been the most wonderful thing for seizure control for me so far. However, it also brought its own seizures with it and though those ones have reduced, they're still present every day (i consider these seizures to be caused by the keppra because I never once had a seizure like that before my last dosage upgrade, when I began having them daily).

The emotional side effects are intense, and you can't let your guard down for a moment when you find out what you need to do to hold back the emotional roller coaster

I've been looking into other drugs I could possibly take instead, but it looks like any other medicine has either already been ruled out,due to allergies or no seizure control, or has some very scary side effects like cerebellum shrinkage. While keppra may also have some major physical side effects, they aren't yet known.I'd rather place my bet on something that may not have phsyical side effects than on something that definately does.

I am concerned that the keppra may be affecting my bladder, but I can't find any correlation between bladder/urinary tract and keppra online. I'll be bringing that up at my next doctors appointment.

I wouldnt' dare go higher on the keppra than I currently am, because it doesn't seem safe to me. And I've no desire to ever again go through what I experienced after my last dosage increase. But my quality of life has significantly improved with keppra. I'm more noise sensitive now, but I really can't say if thats the keppra lowering my tolerance, or if I'm only noticing because I now have the energy to experience more things outside of the house and I haven't been able to attend plays, take walks, or truly browse places for a few years now due to lack of energy. It could just be that its hard to break from the "silence" of home.


What negative results have you found about keppra

 

[BuckeyeFan]

Welcome Jayboi

You will find a lot of feedback here about Keppra. Use the search function and there are probably a couple of dozen threads on that drug.

Like most AEDs, it has mixed effectiveness. For me, it has been quite successful. I have had E for 27 years with tonic-clonic seizures. I have taken stronger and stronger doses of dilantin over the years with fairly good control. Five years ago, my neuro added Keppra and I have not had a tonic-clonic (grand mal) since.

Study up on the side effects so that you are ready for them, but rest assured that most people can adjust to them eventually.

Good Luck!

 

[skillefer]

Hi jayboi! Welcome to CWE. I don't take keppra, but from what I've read here, it's like alot of other meds. For some people it works great and for others it's horrible. As buckeye suggested, read up on the side effects so you'll know what's a side effect and what isn't. You never know, you might actually not have a whole lot of side effects.

 

[sixpack]

my daughter takes 3000mg of Keppra a day. It has been known cause mood swings or aggressiveness/agitation. According to my daughter's neuro from Louisiana, Keppra can deplete B-6. Which may be what causes the agitation etc. So she takes 300mg of B-6 daily. I didn't see any increase in aggresive behavior since she's been on this med---about 4yrs now.

 

[Bernard]

Hi jayboi, welcome to the forum. :hello:

 

[dfwtexas]

I have been on keppra since May. The drowniness was a big issue and I didn't notice the emotional swings until in the past month. I have really pisted off a lot of people...and since they don't know my condition, they just chalk it up to I am a bitch! hehehe My son knows about my condition and he saids dealing with my anger is the worst. I am wanting off this roller coaster!

 

[BuckeyeFan]

For anyone on Keppra

This doesn't always work, but it has helped me most of the time.

I don't let the Keppra emotions bottled up. I take out the Kep-rage on inanimate objests as much as possible. Exercising hard. Working in the garden. Yelling at politicians or sports. Or even just going off by myself and venting.

Big thing is to always walk away from other people and don't take it out on them. Keppra has been known to really strain some relationships (other meds can do this as well). Just vent on something you can't hurt.


Then find something funny on TV, the net, or anywhere because laughing can really relieve a lot of that stress as well.

:rock:

 

[paradise survivor]

You can always count on Buckeye to give a great response! I have not tried Keppra but given my sordid past with other meds I am on the partial ostrich plan...I take enough phenabarbitol to make me sleep and then I kinda wing it. I try to pay close attention to triggers (and toxic people) and try to know where the exit is if I am not at home. My hubby and I spend a lot of time together (on purpose, for you doubters out there) and he keeps me safe. A few close friends know but that is about it. Funny huh, trying to be low profile with seizures...it's an art!!:woot:

 

[jayboi]

thanks a lot guys you have been a lot of help. I recently called my doctor and talked to the nurse about doing those tests to see if i'm a candidate for surgery and she put me on a wait list. i will be calling at the end of the month to see when i may be able to go in. wish me luck!

 

[paradise survivor]

Best of luck- Keep us posted on how it goes!

 

[nana1]

Welcome to CWE jayboi. I am on keppra 1000mg twice a day, i also take along with it lamictal 200mg, zonegran 100mg, they both twice a day also. This mg on keppra i have been on for about 3 months know. All or some meds have different side effects , and act different for each person. Me personal the keppra has given me the moodness, know the headachs. I just get away from people and things i could break when i get to moody. I come to this forum and vent in one room, and go to creative writing room and do poems or stories and write. Anything to calm me down. Ive got to calm down and stop being stressed out so much as these are very good triggers. I have been on meds for over 50 years and still on them and not under control, but there always some sort of side effect to meds, weither it good or bad. I would not want to come off keppra and have a chance of having many more seizure { no thank you} i will stick with the mood swings and headachs { i can live with them}.
What kind of surgery you want? Is it the brain surgery? I had the veeg done to see if i was a canidate and i was not.

nancy:banana:

 

[jayboi]

yes it's brain surgery. they will put me in a room and slowly take me off the meds while they record me on tape throughout the day. they said it will take 7-9 days depending on how much info they can get from it. after that, i guess i will be put back on and wait to talk a surgeon to see if i will be a candidate. i have done all that EEG and CAT scans and whatever before and they always came back normal. the doctor said this would be much more thorough. hopefully they can find something so i can have some more options. i will give you all an update. thanks!! this forum has been very helpful because i feel like i can really relate to people. it is very hard for me to talk to people about my condition (even my parents and now fiance because i know how hard it is for them as well) i remember all the tears from my mom when i was young. i love my parents so much and it is hard for me to see them worry so much. and my fiance now as well. i have everything bottled up right now that i always tear up thinking about them (even now) haha. thank you all very much.

 

[nana1]

Mine was a 12 day stay in the hospital. As you say you in a room that is takking movie of you all the time, plus they had wires all over my head and have a white { i call } hat on it that takes reading what going on in your brain. Yeap they do take ya off meds, so they can have a seizure come on to help them read some things, then they do get ya back on meds befor ya go home. I did not like the idea of the 12 days being in there. They told me it was only going to be 7 or 8 days { they lie}

nancy

but that was were they found out i was not canidate.

 

[jayboi]

well i guess you helped me come on down back to earth. i think i was a bit too optimistic about them being able to find something that they might be able to fix. i really shouldn't get too excited thinking about this. i will wait and get them to do the test and until then, try not to think about this too much.

 

[paradise survivor]

I did that 7 day stay in the hospital twice! The first time they sent me home early and said nothing was conclusive but we want you to continue meds. The second time a few years later and med free I stayed the whole seven or eight days and I was mad because nothing happened so I thought it was a big waste of time and money but this time even though I thought I was 'good', stuff showed up and then the new mri's and pet scans and finally I had real scientific words to work with, ahhh validation:wootdd thing to celebrate I agree but then that is life with E. Would I do it again-not if I could help it but it did answer lots of questions:twocents: