Is there anything good to say about Keppra?

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J

Jun

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Hi there,

I've been on Tegratol and Onfi for practically my whole time I've had seizures.
I recently moved to the states from Canada and went to see a neurologist today.

He suggested I switch from the Onfi to Keppra or maybe it was switching Tegratol to Keppra....my memory isn't too good.

Nevertheless, I've just been researching about Keppra and I see a lot of negative reviews. Maybe people tend to voice their opinions more if something is bad vs positive.

Does anyone have good reviews regarding Keppra?

Would love to hear from you.

Thanks,

Jun
 
Jun said:
Hi there,

I've been on Tegratol and Onfi for practically my whole time I've had seizures.
I recently moved to the states from Canada and went to see a neurologist today.

He suggested I switch from the Onfi to Keppra or maybe it was switching Tegratol to Keppra....my memory isn't too good.

Nevertheless, I've just been researching about Keppra and I see a lot of negative reviews. Maybe people tend to voice their opinions more if something is bad vs positive.

Does anyone have good reviews regarding Keppra?

Would love to hear from you.

Thanks,

Jun
Click to expand...

Hi Jun.
We were actually having a discussion on here the other day about Keppra. There was definitely a variety of experiences from members. I've been on it 1 year (500 mg 2 times per day) and have nothing but good things to say. Because of where in the temporal lobe my seizures were coming from, I had a lot of anxiety and uncontrollable anger. Within a short period of time of starting the medication, I noticed my anxiety drastically reduced, and I'm actually a happier, nicer person. I even commented on this to my neuro. Best of all, it has been controlling my seizures. I haven't had anymore tonic-clonics. I think I may have had a few simple partials, but my neuro thinks what I was thinking was a simple partial is actually a symptom of the migraines I sometimes get.

My sister was diagnosed with E about a month ago. She's taking the same med, at the same dosage. Before taking Keppra, she was the type to bundle her feelings. Since taking it, she said she noticed she finds it easy to express herself. For example, if she is upset about something, she doesn't get angry with the person, but she certainly expresses her displeasure.

I hope this helps.
 
I haven't had many problems with Keppra. I have overreacted occasionally to things that wouldn't normally bother me, but I've never experienced "kepprage". In fact, I'm much less prone to anger on Keppra than when I was on Dilantin which, to my knowledge, doesn't have a reputation for causing mood swings. Keppra makes me a bit sleepy, but lately that has been helpful.

So, though I could probably have my dose reduced from 1,000mg twice a day (because the tumor that actually causes my seizures has been taken care of for now thanks to surgery and chemo), I stay on it "just in case" so I can keep my driving privileges.
 
Keppra is GOOD for ME!

Jun,
You are NOT going to know how a med is going to affect you just by doing research! Each person is going to have different reactions when they take a med. Some reactions may be similar but they may also be different in some way.
Myself, along with others, have NOT had any negative side-effects from taking Keppra(11yrs, 2500mg/day). You may or may NOT have side-effects you don't like.
This is why people who have to deal w/E may have to use 'trial and error' when finding a med that works for them. This is a part of how they find a med that may control their seizures.:clap:
Unless you don't want to deal with this, trying Keppra may be what you should do.:twocents:

ACsHuman:hugs:
 
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My son did not experience any negative nor positive effects of Keppra. It simply did nothing for him (as far as I could establish, he can't tell himself.) But I do know several kids (with West syndrome) who are seizure free since they are using Keppra.
 
Jun said:
Does anyone have good reviews regarding Keppra?
Jun
Click to expand...

I'm now on different medications but before I started these ones Keppra was the only one that controlled my myoclonics. It didn't take a very high dose to control them (1500 mg), but then it was an add-on to a couple of other medications for my other types of seizures. At 1500 mg I had no adverse side effects.
 
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It has controlled my seizures better than other drugs I've taken. I can say that much good about it (which is not a small thing).

I have had some side effects though, but I havent switched yet.

My question is why do they want to switch you? Is it because of the memory issues, are you having breakthrough seizures? Why does the neuro want to make the change?
 
Thank you so much for all your opinions. I understand that not everyone reacts the same way to AED's. I'll be the judge when it comes to what drugs I want to take. For now, I'm here to gain insight on people's personal experiences with Keppra.

Dignan said:
My question is why do they want to switch you? Is it because of the memory issues, are you having breakthrough seizures? Why does the neuro want to make the change?
Click to expand...

Not to be rude, but I'd rather not wander away from the original topic of hearing from those who's found benefit from Keppra. Of course there are reasons, but I don't want readers reacting to my reason and getting off track.

Many thanks,

Jun
 
Why the Switch?

Dignan,
There can be many reasons for your neurologist to suggest switching meds. They may have learned about a new med that has come onto the market and that med may NOT have caused the side effects that Keppra has caused for you. The doctor is looking over your file and trying to determine if what he or she could do to help you more.
This switching of your meds is something that any person who has E may have to experience.
Many times the doctor has to use 'trial and error' when it comes to finding the med or meds that control your E most completely. This process can be very difficult for the patient, but it is being done with the patient's best interest in mind. This is something that you could ask almost any person who has E about.
You would find that a very large percentage of people w/E have had to use this method when it comes to finding the meds that control their seizures the most.
This also may continue as you age because a person's body changes biologically as a person ages. I have had meds switched many times in the 50 years I have lived with having E, if only in dosages of the same meds!:twocents:

ACsHuman
 
Believe me I am not trying to hijack the thread at all. I even stated the benefit I have received from Keppra, which is that it has controlled seizures better than anything I have taken before. I also understand exactly how difficult it is finding the right drug from my own experience with E for over 25 years. Better than most in alot of cases, as I too have had to switch drugs and use trial and error at least 4 times over 25 years.

I only asked the question, because as much as I have seen neuros using proper methods, including trial and error as is often necessary, properly to find the right med, I have also seen some in my personal experience who just prefer a newer drug to an older drug.

I was in such a position, where I was seizure free, but my doc had me change to a newer drug because he felt it was better long term (had me discontinue Dilantin).

I only brought up the question because if the OP was seizure free and not experiencing side effects, and perhaps the doc wanted to change simply because it was his belief a newer drug would be better, that it might be better to not rock the boat.

I meant no disrespect to the OP, did not mean to hijack the thread in another direction, or anything else. I'm sure the OP has there reasons and we can leave it at that.

However, I can assure you I do not need any education on this process.
 
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Dignan said:
Believe me I am not trying to hijack the thread at all. I even stated the benefit I have received from Keppra, which is that it has controlled seizures better than anything I have taken before. I also understand exactly how difficult it is finding the right drug from my own experience with E for over 25 years. Better than most in alot of cases, as I too have had to switch drugs and use trial and error at least 4 times over 25 years.

I only asked the question, because as much as I have seen neuros using proper methods, including trial and error as is often necessary, properly to find the right med, I have also seen some in my personal experience who just prefer a newer drug to an older drug.

I was in such a position, where I was seizure free, but my doc had me change to a newer drug because he felt it was better long term (had me discontinue Dilantin).

I only brought up the question because if the OP was seizure free and not experiencing side effects, and perhaps the doc wanted to change simply because it was his belief a newer drug would be better, that it might be better to not rock the boat.

I meant no disrespect to the OP, did not mean to hijack the thread in another direction, or anything else. I'm sure the OP has there reasons and we can leave it at that.

However, I can assure you I do not need any education on this process.
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My apologies, I hope my previous post didn't sound like I was trying to be hostile or criticizing. I gave my neuro, who I was seeing for the first time since coming here, a copy of my blood work from my primary care physician. He noticed my Tegratol levels were a little below range, so he suggested a couple options...one of them being Keppra.

I'm a bit hesitant about changing meds because I've been on them for the better part of like 15 years or so. Frequency changing depending on what stage of my life I was at ( school years ... Working years etc). Right now, it's been once a month, but I understand, compared to many others, mine is pretty minor. Nonetheless, I would still like to strive to have my seizures controlled, even if that means switching meds.

What people think about me wanting to look into changing meds is irrelavent. I'm just trying to gather people's personal experiences with Keppra so I can make my own judgement and decision.
 
Certainly no apology is needed. I didnt mean for my post to come across as angry or defensive. I was responding to previous posts as much as yours. I totally understand wanting to be private and being your own best advocate.

As you already are aware, individual experiences vary, but I can say that for me Keppra has prevented seizures. In fact, I have not had one in the 5 years I have taken it (that I am aware of). Also, I have not experienced the anger, "kepprage" issues that some others have. My only complaint is more about fatigue, energy, levels and focus amongst a few other things, which are things that some people would say is an okay trade off. I suppose. I do feel like it has flattened me out emotionally, but that is again how it affected me.

Hopefully, you will get the good seizure control without side effects. I wish you the best of luck with your decision and good health!
 
Hi Jun,
I was on tegretol for many yrs. then I broke out with a rash from the drug and I was put on Keppra. I know everyone is different when it comes to AED's but Keppra made me have a hot temper and it increased my sz. I then had a DNA test done and my Epileptologist found out I was drug resistant to all sz. drugs out on the market right now. I have found that taking vitamin B12 1000 mcg. once a day has been a big help reducing my sz. I wish you the best of luck and May God Bless You!

Sue
 
Many thanks again for all the continued comments.

I think reality just kicked me really hard in the head. I never knew Onfi/Frissium/Clobazam was such an expensive drug here in the U.S. In Canada, it was A LOT cheaper.

I've been really hesitant about wanting to take Keppra, which hot me looking into other AED's. I thought Lamictal might be an option. Is that something that can be exchanged with Onfi? And by exchanged, I mean interchangeable in terms of drug usage, and yes, I'm completely aware that not everyone reacts the same way to an AED.
 
Hi :)
I have never been on anything else but keppra (but i have been on it for 3,5years.
I think it was a bad sometimes because of the anger/sadness thing, but looking back they were stressful periods in my life.
Lol and the good news is that i haven't yet grown a beard, and (according to my neuro) its the med with weightloss amd increased effects of alcohol as the side effects, So really it cant get better hehehe :)
Best of luck
 
Keppra has worked well in getting better control of my seizures and no real negative side effects. I take a low dose of B6 (you don't want to overdo B6)--as long as I keep up with that, no side effects at all. When I stop for long periods of time my mood tanks, so I keep taking it. With B6, you should have your levels tested with regular blood work, as that is one vitamin you can get too much of (causes peripheral neuropathy).
 
Keppra and lamictal can both treat focal and generalized seizures. Lamictal/lamotrigine has a much longer titration/wean schedule and doesn't play nicely with lots of other drugs. Keppra is great at not having drug interaction problems (just don't take at the same time related drugs which are fairly recent). When keppra works, it starts working the next day, like before you are at therapeutic levels there can be improvement. It tastes awful, according to my child who took the liquid formulation. Didn't see rage but did see child talking about wanting to die (very serious desire) so got off that. Initially we started keppra to get off lamotrigine, which would have been months long wean. But since then the reports of partial events has really gone down and needed drug that treats generalized seizures that appeared on last vEEG so just using lamotrigine for now at a level just under bad bad side effects.
 
Hi I thought I would give my 2 cents! Keppra helped my daughter with her grand mals that started with focal ones. She hasn't had any for years and is currently med free also. She didn't seem to have any side effects. Kinda loopy at first then that went away.
I have been on keppra for 3 years for my myoclonic jerks and have been doing great. Under control and no problems. Some side effects I have are vitamin B12 deficiency and my eyes are tired and loose focus. I now have reading glasses that help with that.
best wishes to everyone.
 
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