Anyone Else Had/Having This With Keppra??

[Elaine H]

Hi All

I've recently started a new drug, Pregabline/Lyrica it's replacing my Zanisomide, as I've started having Atonic Seizures. I also take Keppra, Oxcarbazepine, and Clobazam for Cluster Seizures.

Since I started this combination, I have noticed an unbelievable increase in my sex drive, bearing in mind my sex life drove off about six years ago, during the menopause, losing my darling mum, various jobs and having brain surgery for the second time. the main reason for losing Mark. I hope you guys don't mind me asking, but it's freaking me out a bit, and I have never been one for side effects, I never read the leaflets that come with the drugs, and a friend of mine who also has epilepsy, recently told me that he was like a rampant bull since starting Keppra!!!! I just thought to myself yeah right, at the time, but since I started taking the Pregabline, It's a different story. It sounds funny, and I feel like ringing Mark up and saying "come back, all is forgiven!!" Ha Ha, no, he gets married next Saturday, maybe I should go along to the church and stand up and shout "It should have been me!!!" in a pair of fishnet stockings and a basque!!!
I hope you don't mind me asking, but if us guys can't talk on here, where on earth can we go?? I am very old fashioned and daredn't mention it to my specialist, I would curl up with embarrasment!!! Keppra is the drug behind it I think, it is quite frightening actually, I hate taking any of these drugs, but I can't help worrying about what they all do to our brains, especially with four different drugs on the go at the moment to try and stop these awful Atonic?Drop Attacks, I've been collapsing all over the place recently!
I hope everyone is doing well, I would love to hear back from anyone who has experienced this, please put my mind at rest that I'm ok, and maybe it'll either pass or at least sort of, well, you know, calm down a bit!!!!!!!!onder:Lotsalove Lainey XXXX

 

[Nakamova]

Well, Lyrica/Pregabalin lists increased libido as a side effect (also decreased libido, so I guess it just depends on the individual). Keppra seems mostly to decrease libido, as does Zonisamide. So my guess is that it's going off of the Zonisamide and going on to the Lyrica that's revving your engines. I hope that your Drop Attacks go away, and that you find a Mark-replacement soon!

 

[wiggles1]

I had keppra at one stage, and had to be taken off of it very quickly because I started having hallucinations and becoming a problem for self and others round me. Think this drug was taken off about 6 weeks after starting.

 

[Elaine H]

Keppra Off The Market in US??????

Thanks for replying, I so appreciate it!! Is that right, Keppra not available in the States anymore?? If you could let me know I would really appreciate it, as two of my friends also have problems while on quite high doses of Keppra. Is it off the market?
I have had two very very bad nights of absolutely terrifying Simple Partials, or Night Terrors, or whatever they were, it's been like when I was first diagnosed back in 1986. Last night, I only describe it as.... A3D nightmare, I was in the nightmare, and also watching it, like a spherical image, but I can actually take a slice out of it, like a cake, but I am also being mocked by the epilepsy, as if it is personified by some evil eyed man, laughing at me trying to escape it!!! The most terrifying experiences I have had in many years. I was out of bed at 2am, tried to read until 4am, couldn't focus on the book, gave up and got up at 6am, and e.mailed my neuro in London a plea of desperation at 6.30am!!! He replied and told me to stop taking the Pregablim, that is what seems to have caused this indescribably terrifying weekend!!! I had to write it all down when I got up, this 3D image, and the personification of epilepsy , with mocking facial features, as I tried to escape the whole scenario, it was almost calling me back into it!!!! I dare not go to sleep tonight, and hate living alone when I am like this. I haven't experienced it for about twenty years, and forgot how frightening it was. I am going to go back onto my Zonisamide, the sex drive will have to wait until another time, I'm single right now anyway!!!!! Thanks for your input mate, keep in touch, we must all stick together huh? Lotsalove Lainey XXXX

 

[Cint]

No, Keppra is not off the market in the U.S. I take 3000 mgs. of the med myself and haven't experienced the side effects that you describe, Elaine. Just the opposite for me.

 

[momof3boys]

last I heard, Keppra was still in the U.S. I take 3000mgs of Keppra XR. I havnt had any of the side effects like you are describing. If anything, when I was on the Keppra (500mg tablets) I was having really bad headaches. But then my dr switched me over to Keppra XR and the headaches went away.

 

[Bathtub]

Nightmares are so horrible when you're on your own and are scared to go back to sleep... You could always be very naughty and give a call to that rampant bull friend of yours, see if he's busy...?!! :bjump:

@Wiggles1 thanks for shaing your experience too, I think my daughter will be reassessed and probably told to start Keppra very soon (she was given some after first seizure but rightly reluctant about starting it) and it's good to know what to watch out for.

 

[petero]

Think this drug was taken off about 6 weeks after starting.

I think this meant the poster him/herself was taken off of the drug after 6 weeks. Not that the drug was taken off of the market.

I just had to look up what a basque was - I had never heard that term before. other than the basque language. that must be some language. hehe

 

[Silat]

I take Keppra and Lyrica and I've noticed this as well...
I just figured it was hormones and such, since I'm 22, so I never thought to look and see if it was a side effect of meds.

EDIT: I've also noticed my personality is.... darker? Not like depressed, or angry, or anything like that. I just am emotionally colder than I was before. "Apathy" seems to have taken a grip on my personality. Have you noticed anything like that, or is it just me?

 

[MuayThaiFighter]

I take Keppra and Lyrica and I've noticed this as well...
I just figured it was hormones and such, since I'm 22, so I never thought to look and see if it was a side effect of meds.

EDIT: I've also noticed my personality is.... darker? Not like depressed, or angry, or anything like that. I just am emotionally colder than I was before. "Apathy" seems to have taken a grip on my personality. Have you noticed anything like that, or is it just me?

Yep, on Keppra for me, exactly what Silat said.

 

[Silat]

I had my Keppra raised and Lyrica added at about the same time, and that's when the personality effect really kicked in. When it was lower, I didn't have that, but now at a higher dose of Keppra with Lyrica added - it's really changed my whole persona.

When I showed up here, I was the "Think positive, anything is possible, work in the present to make a better future" type person...
Now I just don't care...

 

[Elaine H]

I stopped taking the Lyrica on Sunday, went back onto my Zonisamide yesterday, along with Clobazam, Oxcarbazepine, and Keppra, and woke up this morning a completely different person!!! I slept right through to 8.45am, didn't wake once, not one single dream or nightmare, and I'm eating again, and most of all smiling again, no dark thoughts, tears, suicidal thoughts, and I'm going into town later alone!! Yesterday I wouldn't even go up the village for a newspaper!!!! I am glad that I wrote down a vivid description of what the whole experience was like, and how I felt, altho' I don't think I shall ever forget just how terrifying it was, I would not have wished that on my worst enemy!!!!!! My Dad said that must be what it's like for junkies when they go on a "trip" well all I can say is, if someone on this planet can honestly pay to enjoy something as horrific as that , they must be completely bonkers!!! I just hope I never ever have to experience it again, one of the worst and most frightening experiences of my entire life! Thanks very much for your support on this, it is awesome that we all stick together on this, and I shall definately include the whole experience in my book, which incidentally is written, I am 188 pages into typing it all up!! I'll get there, but every day there is something new to add to it, at this rate, I'll be writing a follow up in the years ahead! Lotsalove Lainey XX

 

[Elaine H]

Hi Hun

I think there may be a place on the market for Lyrica as a replacement/substitute for Viagra, Christ, I think I would have attacked the first decent looking man that came into the house!! I couldn't believe it, I haven't had urges like that since I first met Mark back in 1999!!!! Whhoooooo!!!!! Anyway, I'm off it now, maybe I'll keep a couple of the pills in a hiding place, just in case Mr Right comes along soon!!!???Ha Ha Ha Ha!! Loltsalove XXXX

 

[Elaine H]

Hi There
Thanks so much for helping me out on this horrible experience with this godawful drug, yep, I have been apathetic, I just sat there yesterday, no make up on, sobbing, and feeling so low, so totally in despair, and just devoid of any interest in the human race, I do however have a lot of emotional baggage at the moment, my ex finace if 12 years gets married on Saturday, and I think deep down it is screwing me up a bit, especially as she is a little fat grey haired woman, with wire glasses, and I am tall leggy blonde middle aged woman who loved the man so much, and I think it really knocked me for 6 when he cleared off last year!! Anyway, I am off the Lyrica, back to my old self again, and determined to get on with my life! It has been fantastic to get feedback from you guys though, this site is fantastic isn't it??!! Hope all is well with you and you are getting a lot from being on CWE? Lotsalove Lainey XXXX

 

[Elaine H]

Hi Cint It's not Keppra that are giving me these problems, it's Pregablin/Lyrica, Keppra is mean to cause all sorts of problems, but as I keep saying, we shouldn't spend too much time looking at the "possible" side effects of these drugs and more time looking at and hoping that they will work for us and control our seizures. The drug company have to tell us of the possibilities of what could happen, that's all, and I never read the leaflets that accompany the drugs, I'm too busy knocking them back with a glass of water, and hoping that they are gonna work for me, Elaine Howell! That's all I care about, not what they did to Fred Bloggs along the road. As it turns out, several other people have had probs with Pregabline, and this makes me feel better, but all I am bothered about is getting my seizures under control after twenty seven years of trying, and this particular drug might have made me feel like a rampant bull, but, all joking aside, I wanna be seizure free!!!
I hope all is well with you and that you are ok with your Epilepsy? Good to hear from you my friend, and once again, this wonderful site and all the great folk on hear, have stuck together, and helped out with this discussion. Chat again soon. Lotsalove Lainey XX