Keppra - positive/negative experiences? - Epilepsy Action

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Keppra - positive/negative experiences?

bryyony profile image
18 Replies

I am currently taking 125mg x 2 per day Lamictal (Lamotrigine), in the process of increasing my dose due to recent seizures, but the medication still doesn't seem to be working as I had another tonic-clonic yesterday.

As an alternative my neurologist has recommended Keppra but it is ultimately up to me to decide whether I should continue to try increasing my Lamictal (which is the only AED I've ever taken since I was diagnosed 7 years ago), or to switch to Keppra. I have only ever heard bad things about the psychological side effects of Keppra (depression, anger, etc), and as there is a history of anxiety/depression on both sides of my family, I am very wary of switching.

What have people's experiences of Keppra been?

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bryyony
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18 Replies
happy48 profile image
happy48

Since I started taking Keppra I have felt a lot better ie full of energy and bright compared to other medications. I started with Lamictal as an add on when I was using Epilim and still do with the Keppra.

she_is_boss profile image
she_is_boss

I started on Tegretol after being diagnosed with TLE at 46 last September and it worked but I lost my sense of taste so weaned onto Keppra which has been horrible for me and also it didn’t control my seizures despite increasing the dose 3 times. Keppra made me irritable, angry and extremely intolerant to anything and I seemed to lose some social boundaries and wasn’t afraid to let people know they had peed me off. I finally got off the Keppra last Wednesday and am now solely on Lamictal and so far just 75mg twice a day seems to be working for me and I am totally back to my normal self which I am relieved at just now fingers crossed that I don’t lose my taste again as it is a sodium channel blocker in the same way Tegretol is. Hope that helps and good luck 😊

RR25 profile image
RR25

I first started on lamictal and it didn't really reduce my seizures so neuro put me on keppra. That reduced mine and I don't recall having an major side effects. The only thing that stands out to me is when increasing the dose i always wanted to sleep. It made me more tired-but was only temporary. I am on it about 8 years. If anything I had more from Lamictal. I am now on both as they are known to work well together.

Lioncub56 profile image
Lioncub56

Hi I started with seizures in 2011 I started on lamictol and tegratol none of these worked together I'm now on 500mg of tegratol twice a day and 2000mg of keppra twice a day I'm tired a lot and some times a bit iratable other than that I'm ok just a few absences.

Rachisawire profile image
Rachisawire

Hi, I have taken Lamotrigine for many years but have found it not very effective at controlling my seizures. As such I am now on Keppra and slowly coming off the Lamotrigine. I suffer from anxiety any way but have found that Keppra has not made it any worse

Miep profile image
Miep

I have been on Keppra for about 4 years and had no side effects at all, my dose was increased once, but I am entirely happy

ItsMe37 profile image
ItsMe37

I have been on keppra for a year, no problems other than tiredness when increasing dosage. Experienced more side effects with generic levetirecetam.

mxcosta profile image
mxcosta in reply to ItsMe37

What other "generic levetiracetam" have you used? I've had used 3 different brands so far, but wouldn't imagine that a different brand could cause different side effects, since they "should" be the same drug, right?

RD_RAB_2874 profile image
RD_RAB_2874

Hi. I started on Keppra in 2014 - I took in 250mg tablets, started with one and to make my way up to four. I found three (750mg - x1 250mg AM x2 250mg PM) was enough for me as I felt anymore would make me feel a bit vacant/numb. Generally no side effects for me apart from just getting the dose right. Im lucky as I've been decreasing it the last few months to x1 250mg a day. Im so glad I chose keppra - I was worried with the other one I would get itchy skin and physical issues as I have sensitive skin. I've just ensured I stay on top of my mental health with a good sleep routine, no over stressing, over working and having a good support network if you ever need to get stuff off your chest :-)

Conron profile image
Conron

My partner started off on keppra 4 years ago and due to subsequent tonic and status was also put on lamotragine as well they both seem to be working at the moment his doze is 1500 keppra and 150 lamotragine twice daily

Rraditau profile image
Rraditau

I am on so many different types of meds including Keppra and I'm not happy with it . I end up sleeping within 30 mins of taking it for so many hours and I have found that every now and then I have snapped at someone for no reason whatsoever. I have spoken to my doctor and they are testing me on another type of tablet on top of what I take for 6 weeks ( perampenol I think it's called ) . So far there's no difference but this is my first week with it so I just hope something goes right otherwise I should travel to the states and apply for a part in the walking dead series .

Rraditau profile image
Rraditau

Everyone's epilepsy and symptoms are different and I suffer with them all , however the cause of mine is soley stress . Strobe lights etc aren't really a problem. One type of med may work for some and not others . My friends partner is on Keppra and she now has a drivers license and I'm not having any luck with it . All you can do is try it and if you find it doesn't help just come off it . Apparently CBD oil is becoming popular as it calms you down/ relaxes you , so if stress is the main cause of ur seizures it might help . U won't get high off it as the THC has been taken out of it .

I hope that has been some help , good luck

JDEN profile image
JDEN

Hi, Im taking 1500mg of Keppra twice daily and have no side effects. I did have some when increasing the dose initially. I would recommend it.

TabbyT profile image
TabbyT

Hi,

I take 1250mg Keppra plus 200mg Lamictal AM, 1250g Keppra plus 100mg Lamictal Midday and then 1500mg Keppra plus 200mg Lamictal PM.

I find I have minimal side effects - just pretty tired sometimes, but now I'm the proud Mummy of a 2 week old baby girl which doesn't help!!!

The main thing is that they control my seizures brilliantly :)

20 years of dissociating no one noticed, kappra rage depression weight gain I felt like a lump on a stone. Now weaning off and replacing it with cbd oil .5ml 3x daily For now seems so far to be my magic number still have 1.5 pills till I'm off completely. also I depersonalization is a side effect of kappra and levatiracetam same drug different name.

Karla89 profile image
Karla89

I am taking keppra I take 1000g twice a day I also take sodium valproate tegretol and clobazam I have side effects my anger can be very horrible at times and makes me a nasty person and also my emotions are all over the place these side affects are not every day but when they hit me they are very horrible

mxcosta profile image
mxcosta

I've developed OSTEOPOROSIS after taking AEDs.... not sure which one has caused it, cause i've already been on sodium valproate (3x 500mg with no effects), them 2x 750mg keppra for 1 year, then 2x ETIRA 500mg (levetiracetam as well, made by aché labs), and one year later, i've been put on 3x Oxcarbazepine 600mg + 2x Levetiracetam 750mg, a lot better on my seizures (focal/partial only), but still had them, twice a week mainly.... and a really bad memory....

But the worst of them all was the osteoporosis.... i've had a broken bone (right arm) 2 months ago.... really bad.... had to go to surgery.... anyway.... my doctor is trying to take me off from LEV now and started using Lamotrigine, but it has been less than one week....

Oh, and LEV also causes a lot of problem with my hands.... lot of rash's, itch, redness, etc... i've a sensitive skin, so it's really bad on me....

apache31 profile image
apache31

We are realizing that everyone responds differently to each drug. My 16yr old daughter has done well on Keppra 3500mg/day in terms of side effects. Changed her mood slightly but nothing drastic. Sadly, we believe it is no longer working as she had a tonic-clonic on back to backk days last weekend. Doctor gave us a choice of Lamictal or Zonisamide.

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