Hi there,

Due to side effects on carbamazepine, my neuro wants to start me on Keppra. (or Lamictal, but Keppra is his first choice)
I read about Keppra and I must say that the behavioral side effects sounds terrible! I know not everyone has them......but a lot of users do!
My question: do they subside over time, are they dose related, does slow titrating up to the preferred dose help preventing the rage and/or emotional outbursts? My neuro wants to start me on 1000mg Keppra at once, divided over 2 doses and over an period of 8 weeks ween me off the carbamazepine.

Any experiences? Any tips, welcome all info!
Would love to hear some positive experiences with Keppra! Since it's allready been nicknamed the evildrug.........But doctor's seem to love it!

Tnx
Dutchepi

Hi - my daughter has been on it for a year - no side effects - as you said - everyone is different. You might want to give it a try and have those close to you monitor you. I was extrememly hesitant to use it, but needed hope and went for it. So far, it has helped to some degree......all the best to you, Paula

Thanx for your reply Paula! It's always reassuring to hear that there are good experiences with this drug! You're suggestion of letting close ones keep a watch for the side effects is a good one!

I still hope there are users here who can shred some light on the dosage question. My neuro claims that the behavioral side effects are more of an issue on higher doses than the 1000 mg he thinks I'll be needing.
Is it?

I've been reading some info about both drugs, and truthfully I like neither of them. But since going without is not an option, I'll have to use either the Keppra or the Lamictal.

I Feel like I have to choose between Scylla and Charybdis.............Either of them a bad choice, but wich is the least harmfull to me? Probably only answerable by trying...........
Am I making this too difficult?

I hate those meds!:mad:

One comment I will post, GO SLOW in the reduction of Teg (carbamazepine).

My prior doc went fast in his attempt to remove me, 200mg/wk, with ME objecting in the office obviously not making any noise in his ears. Since it takes Teg up to 3 weeks to become stable when increasing, I make the assumption the same may be true when reducing. So slow is the key.

My new doc mentioned to me reducing my current Teg down the road, I told him if we do that again we better try it by 100 and sit and hold, explaining what happened before. I may be willing (for MY BODY) to reduce 100mg every two weeks; that gives 14 days for the body to become accostomed to a lower rate of medication; better than dropping it 200 at once.

When they tried 200mg reductions with me, after two I had 2 Gran-Mal's near Denver Colorado around when I was attending a relatives wedding. Not what I had wanted.

Reaction to Keppra can differ, I'd ask about going SLOWER for starting on it then an initial 500/500. If you could start out 500PM wait a week see how you feel; then up it 500 for the AM see if there are any reactions. From there keep a log. Once you note changes or problems CALL the Dr. Some people can't handle the 500's and use the 250mg's when ramping up, sometimes even splitting them and going at a slower (14 day) rather than 7 day schedual.

--Travis

Tnx Travis, this is helpful information!

No worries my neuro wants ween me off the Teg slowly, reducing my dosage with 100mg each week!
Auch........your experience of a faster reduction resulting in 2 gran mals is not something you wish for!

Starting slower with the Keppra is a thougt........but I guess my neuro's idea is that a initial dose of keppra of 1000mg is working within 24 hrs, so that will give me an almost instant therapeutic level and making it possible to start reducing the Teg simultaneously.
But I guess we coul also start the keppra at a 500 mg, as you suggested and in the 2nd week up that another 500. And dropping the Teg no sooner than the 2nd week when indeed the Keppra does reach therapeutic level!

Hmmm food for thinking, but as I stated: helpful information!

As for me I been on it for almost 2 years and didnt have any side effects either, it does depends on the person, so follow your neuro directions to the T and take it slow with the changes of meds so u can notice any negative changes. Best luck to you

It is really good to hear that there are people who haven't experienced the behaviourial side effects!
I think I have to try it, and find out what this drug does for me!

But to make things more complicated: my thyroïd is acting up and I really have to cut back on my thyroïd meds, which is a slow process. Since this excess of thyroïd hormone is making me emotional and mentally unstable, I doubt that this the right moment to go switching epi meds! Have to consult my neuro and endo about this......

Bomber 'cause the carbamazepine is causing tremendous side-effects!
But I'm pretty sure I have to delay switching..........:(

Question: are there any of you that did experience the behavioural side effects at start, but noticed them disappearing over time?
Or is it that when you get them, this drug lives up to it's own nick and becomes a evil drug for you and stays that way?

Although the positive stories where reassuring, I'm still anxious and quiet nervous about switching...........,sorry!

Tnx for your replies and whishing the best for you all!

Hi,

I just went on Keppra about 3 months ago and like you, I was scared...but then again, I was on Topamax and the side effects I experienced from that were cruel and unusual. I read that vitamin B6 has been documented to counteract the emotional side effects of Keppra.

Gotta say, at first I was raging a lot. I was also depressed. The circumstances of my life aren't so hot so it was easy to lose control only the Keppra made it out of control. I gotta tell you, though, the B6 has helped. I am not raging like i was. I take 200 mg a day. (100 mg twice a day with the Keppra).

Good luck. Keep us posted.

I read about your personal circumstances and indeed they where far from ideal! Still you managed the switch!
I came indeed across vit b6 helping counteract the side effects on this board or another, can't remember. Is there any scientific proof for this? Or is there an Keppra induced shortage of b6 that causes the side effects?
And......the amounts you're taking: :eek: That's a lot! It is quiet possible that the daily recommended dose is a lot higher in the US, but still.....
Did you know that too big an intake of vit b6 in itself can cause neurological complaints?
Sure if b6 helps, I'll pop it too. But I'm not sure the dosage your taking is recommendable! But maybe that is caused by the differences in DRD dosage between the US and Holland?

Sure I'll keep you all posted!

I have an EEG scheduled for next tuesday
The week after that I have an appointment with my neuro, in which we are supposed to talk about EEG findings (if there are any) and switching meds, which I think we have to postpone untill my internist/endo has sorted out my thyroïd meds.

I wasn't aware that B6 caused neurological problems but the way I look at it, it's only helped....and Topamax had a lot more of a negative impact on my body.

From what I've read, Keppra depletes your body of B6 which controls the central nervous system (hence the rages). I asked my neuro about it and he said it was fine that I take the B6 (I didn't give him the dosage). I started off at 100 mg and then upped it to 200 mg which helped. I am under a tremendous amount of pressure now (I'm a caregiver for my mom who has cancer) so I cannot afford to get rages.

Good luck.

I came across some info, after my posting, that supplementing b6 is likely to cause neurological problems if it is suplemented for a long period (several years!) in dosages exceeding 500mg daily!

So probably 200mg is indeed save, although it keeps sounding like a hell of a lot!

I'm sorry to hear about your mom! You must indeed suffer from a tremendous amount of stress............

Still, even if the circumstances are better, I'm pretty sure that none of our loved ones appreciate those outbursts!

I'm wondering though, is Keppra only depleting B6? 'Cause that's not the the only b vitamine that plays a crucial role in our central nervous system, I'm thinking of B3, for instance.
Hmmm, must search on that also and ask neuro!

Aside from the side effects, Keppra does sound like a good drug! But aren't they all without the sidefx!:D

WOW - 1000mg of Keppra straight away?!? I'd re-think that. It comes in 250mg and 500mg tablets too, I'm used to big doses of different meds and my meds changing a lot, and my neuro told me to go slow adding Keppra in - I was on 250mg daily for a week, then 250mg twice daily for a week etc, now on 1500mg twice daily. At first I had hyper episodes 'hyper half hours' - which were actually quite fun, because they didn't last too long, made me happy and it only happened for a couple of months or so. No other ill effects of Keppra.

I'm also on Lamictal/Lamotrigine, been on that for 9 years now, it was the first drug I was on. At first it just made me feel queasy - I took it at 7am and 7pm, and when I changed it to 11am and 11pm this stopped. Lamictal is a good choice for women of child bearing age (as opposed to drugs like Epilem), and it's generally considered a 'safe' drug.

Ultimately it's your choice.

Best wishes,
Eilidh
x

Apparantly 1000mg, according to the prescribing info, is a normal starting dose.

But I've been thinking also: wouldn't the sidefx be less if Keppra is started slow? You experienced not many sidefx and maybe that was indeed thanks to your neuro giving your body time to adjust to the new drug.
Consequence would be that I have to wait cutting the Tegretol (carbamazepine) until I'm on the full dose of Keppra; but that wouldn't be a problem!

I'm still not sure wich, Keppra or Lamictal, is the better drug for me, have to talk about it some more with my neuro.

Tnx for your info, I will certainly rethink the starting dose!

I started on Keppra 1000/day (500 in the am, 500 in the pm). I was weaning off Topamax at the time so I don't know if my reaction was the combination of the two drugs but I felt dopey to the point that my eyes were droopy. My jaw also felt weird. I didn't feel bad, just tired and completely relaxed aside from the jaw which kinda ached and felt like it needed to be moved constantly. It only lasted for a day, though.

I am now on 2250 (1500 in the morning, 750 in the evening).

For me, Keppra was a godsend. After the topamax hell, I needed something that would allow me to think again and speak comprehensively again? I was so braindead on the topamax. I still have anxiety but the rages have definitely subsided.

i've been taking keppra for several years and i am slowly lowering the dose. i have experienced overreaction episodes and intense anger outbursts - i mean something would happen or i would hear someone say something, i would take it personal and it was all i could do to control myself, my heart would sometimes race. i even started to avoid human contact just to avoid potential situations.

i was taking 3000mg and i was feeling much better at 2000mg, so i stayed at that level for a while, but i was experiencing longer and longer periods of depression so i dropped it just another 500mg and i feel 100 percent improvement.

logger:cool:

TKM and Logger: tnx for the replies!

TKM you state it to be a godsend, but apparently yo didn't have a smooth start with it either! But I'm happy to hear it is working out great now!
But one men's bliss is another men's hell..........(or wathever the expression is)

Logger, I must say that your reply is scarefull as to wat Keppra indeed can cause! But your story seems to correlate with what my neuro claims, namely: the rages being more of an issue if the dosage is higher and especially around the max. dose.
Didn't your reaction to the drug, you did take it for several years at the higher dose, want you to quit it? It must be so awfull not to thrust your own reactions in people interaction! I feel for you and I sincerely hope this won't happen to me! But I am glad you shared this story! I do want an honoust picture of this drug. Logger, pleased to hear the lower dose is working out fine!

For me it might be complicated by my thyroïd imbalance of the moment, I'm afraid this imbalance might make me more susceptable to the sidefx and I'm also afraid the doc's can't answer me on that one!

I have an appoinment with my neuro next week and we'll be discussing this lenghtly! We also will be discussing my EEG registration from yesterday, which, unexpectately didn't quite agree with me! The light flashing part of it made me either experience a miniseizure or put me on the verge of one, next week I'll know if the registration did show! But after I was exhausted and the technician asked me if the flashes caused me a headache or made me feel dizzy. :confused: She also asked me if I was accompanied by someone, incase I got a seizure............That was very very odd, no technician ever asked me that! Next week I know more!

Well, the EEG had some abnormalities but none off them were epileptic! That's a relief........!

My thyroid problems, aka my overcompensated hypothyreoidie does seem to make me more susceptable for seizures now, or so it seems. There is some literature about thyroxine lowering seizure threshold, so I'm not making it up!

Anyway, due to the thyroid imbalance, according to the neuro now isn't the right time to go switching meds! So the starting of Keppra is postponed with 3months, in the hope that gives my internist ample time to sort out my thyroid! Bit of a bomber.........I had just worked myself up into going to switch, and now the delay..........:confused:

Fortunately the carbamazepine problems are not that big that I have to switch richt away, so that's a relief, although they still do warrant a change in meds;

In the meantime:
I still welcome any stories with Keppra experience: good or bad!

Whishing you all the best!