Keppra / levetiracetam

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

R

rhiz

New
Messages
95
Reaction score
0
Points
0
i searched over the forum and couldn't find a thread purely about this drug and what people have experienced

i'm moving onto it tomorrow because i had no other choice but to leave lamictal after 2 years and seek refuge in a drug that might actually work

but what i mainly ask is, what is your experience with keppra/levetiracetam?
especially if you took this in adolescence!

i'm REALLY worried about all this hair loss stuff that i see people write about alot and my hair has been thinning out alot recently for an unknown reason and i could do without a drug that will influence it :(

thank you in advance :)
 
yeahh i tried but i didn't really get much out of just one thread and each thread seems to be completely different so its really hard to see opinions properly :( as some threads just mention it once or twice and completely dont relate it and i did search for a good while!
 
thank you i have had a quick read over those sites =) quite useful too!

i am also however, partly seeking comfort or maybe realisation of the drug in the experiences of members here too
although it effects everyone different its very hard to tell with how generic these sites can be :(
 
I started taking it about four months ago. At first is was terrible. But I am getting used to it.
 
Rhiz,

I was on Keppra for 5 years with good results. I also take Dilantin (for 28+ years). The Keppra was added to the Dilantin to stop breakthrough seizures. Last spring I moved off of Keppra to Lamictal. I was having issues with concentration, motivation, and possible simple partials that I had not had before. The doc simply felt the Keppra had ran its course for me.

The good news is I got 5 good years out of it with no hair loss (pretty good for a middle aged man). Thus far the Lamictal is holding its own as well.

One thing to watch out for on Keppra is mood swings. These may happen, but can be no big deal if you can do what I did. When I would get agitated or angry, I would let it vent. I would not keep it closed inside. You have to let it go or it just gets worse.

THE KEY to this is to NOT take it out on a person. Get rid of it through vigorous exercise, yelling at sports/politicians on TV, working hard in the garden, or other similar release. Yea, I let go more than a few times, but always tried to make sure it was something inanimate.
 
Hi Rhiz --

I'm not on Keppra, but I know someone who is who has had no side effects, and is quite happy with it. Some people experience moodiness or "Kepprage" and have found that taking vitamin B6 helps with this. The side effects for all the AEDs are unpredictable, unfortunately, but I hope Keppra turns out to be the right match for you.

Best,
Nakamova
 
Keppra

Personally I hate Keppra and didn't last long on it. However, I think I'm in the minority since I've heard a lot of people do well on it. I did have the hair loss with it and you question your hair loss for unknown reasons and my guess is Lamictal. I had some hair loss with that one as well, but IT DID GROW BACK once I went off it!!! Try the Keppra because I have heard a lot of positive stories with the Kep, unfortunately not for me though. The 1st few weeks I was EXTREMELY TIRED but this did wear off, so just be prepared. I tell you this because Lamictal tends to do the opposite for many - it's like an upper. GOOD LUCK!!!
 
I have been on Keppra since I got diagnosed about a year and a half ago. They have adjusted my levels as I have been having a seizure out of the blue once every 5-6 months. Overall I am very happy with this drug. I have not had any problems with hair loss on Keppra, but doc tried me on Keppra XR and I did immediately have hair loss issue. Neuro put me back on Keppra and no issues since. Doc thought it was weird as he said he has seen a few patients with hair loss probelm on Keppra but not XR. But seizure meds and their effects and side affect vary greatly from patient to patient.
When I started on the Keppra, I did have problems with being drowsy, but that went away after a few weeks. After a few months on it, I had some very emotional days. Some people cannot tolerate the "kepprage", some have found additional vitamin B supplements (I think it is B12?) help with the kepprage. Personally, it was another side effect that got better as my body adjusted and it has not been a problem to me.
When I did some research, it appeared to me that Keppra has less side effects from other seizure meds and am happy it seems to be the drug to help me. Don't get caught up in side effects that may not even effect you, I think it is worth trying and find out how it works for you.
Glad you found us and welcome to our group
Jenn
 
The first 3 months (6 weeks to ramp up to 3000 mg) were very tiring. The next 3 months were off and on. After 1 1/2 years it is more like an upper when I take it. I have a shorter fuse so when I start to get angry it is not too long till I go off. I normally go do some yard work or just go in a quite room and listen to music. The worst time of day is the hour before a dosage until it kicks in. My wife says when it kicks in my face turns red. Everyone is different but you can get past the issues and get into a routine that helps deal with any side effects. Good luck!
 
Ahhhhhh, yeah

KEPPRA!!!!! BLECH!!!

OK, it's not a bad drug, really. For me, however, it sucked a hill o' beans. I made it through a WHOPPING 14 DOSES of it before I had to give up.

The first 9 doses--500 mg once a day, in the evening--turned me into the Energizer Bunny ON SPEED. Chores that SHOULD HAVE taken 4 hours, took ME 20 MINUTES. NO JOKE. Stopped that....saw my neuro a couple days later.

OK, so let's try 250 mg AM & PM. Sure, no biggie. Start in the PM--FIVE DOSES later--I'm seeing things IN TRIPLICATE, WHILE THEY'RE ROTATING--at work, no less.

It's safe to say that I had a RARE reaction to Keppra, and that I WON'T be going back on it any time soon!!!

Good luck to you, though. So many other people have great luck with it, and I am sure you will, too. I just do things weird. Never fails.:roflmao::roflmao::roflmao:

Make sure to keep an eye out for moodiness.....the "Kepprage" people talk about CAN be dealt with by taking B vitamins---either B Complex OR just B6.

Take care!

Meetz
:rock:
 
thanks for all the replies :)

i see everyone reacts real different with this one like alot of drugs i guess
i wasnt too sure if everyone experienced the same side effects or not

i completely slept through my alarm today and was a zombie till about 5 so i guess this is the start of my couple of weeks of being drained like i was on lamictal :(

i did however get some b complex today so i'll be keeping on that alongside my levetiracetam :) thanks for the tips on vitamins

thank you for the support too :) i'll keep a real close eye on any changes just to make sure :)

and those sure are some weird side effects meetz!
 
Well, we are here if you need to vent. Let us know how you are doing. Hey, I had same thing happen to me my first week...I never understood how someone could sleep thru an alarm and then I did it too!
Keep track of any problems you are having so you can talk to doctor. I have been happy with Keppra
 
Hey, what

can I say? I don't EVER do anything NORMAL!! :roflmao::roflmao::roflmao::bigmouth:
 
I take Keppra. I originally took the generic but it gave me absolutely no seizure control and had horrid side effects. I was losing hair, falling down, and passing out. (I'm 16 btw) So I decided to switch to name brand. The side effects weren't as bad and gave me more seizure control. I've been on it since May.
 
Generics are a good thing...with the exception of seizure meds. Some people can do ok with them. I had problems with the generics as well as many others on here. I would recommend having your doctor prescribe brand name only to avoid these problems.
 
I'm 21 and have been on Keppra for just over a year now as a monotherapy. When I first started I the sleepyness was unbearable, couldn't stay awake for lectures. I used to be a genius at concentrating for long periods of time but now after 20 minutes on something my mind would wander and then before I knew it I'd be face down fast asleep on the desk :p

That all went on till I'd finished titrating up to my maintance dose and then continued for another month. It was like a miracle had occured after that, I just woke up one morning and realised I felt great. I still have off days every now and again. I never noticed any anger problems but I get stressed and worried very easily now. Recently I've noticed my hair thinning slightly but I think that might have more to do with my love of my new hair staightener (oops!)
 
Sorry if this is a bit of a post gappp :X

I've been on it for about a month now and I accidently missed one or two and had my first ever tonic clonic which isn't too grand :( But my myoclonics have gone down aaaaaaaaalot and I'm quite happy now that when I get a bit stressed out, I don't have 20 seizures in a row like before.

I think my hair is thinning, but it's so hard to keep an eye on :(
Thank you for all your advice :)
 
I suppose to take 750mg of it a day, I'm afraid to take this much, I don't know what it will do, I'm only on Valium at the time.

Billy
 
You must log in or register to reply here.
Back
Top Bottom