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Switching to Keppra - your experiences??

Hello fellow Epi's ..... I'm here seeking stories, experiences, and advice. When I was 16 I started getting myoclonic jerks. This brought me to the Doc, and I was diagnosed with epilepsy. I'm on 1000mg Depakote p/day & Tranxene too (take as needed). These have been kinda working for me, however, I'm turning 27 this month... After being on Tranxene for the past 10 years I've built up quite a tolerance. 1-2 used to do the trick (stop myoclonic sensations and generalized seizures) , now, I'm up to 8-10 a day!!! and suffering more than ever!
Recently, I had 3 seizures pretty close together... in fact, one was only yesterday. I'm also constantly tired and I have been suffering problems in keeping erections.
I've decided it's time for a change - I'm looking into Keppra , and I was wondering if you guy's could help me with any advice, stories, experiences, etc....

Thanks in advance!! - E.T.

"When going through hell.... Keep on going!!" - Winston Churchill

Comments

Re: Switching to Keppra - your experiences??

evening ET

I see you said something brought you to the DOC.

Ok you have had seizures for 10-11 years. It sounds like your medications have not been working like they used to. That is a normal thing. That isn't an issue.

What I see is YOU have DECIDED it is time for a change....  SO you look up Keppra and want information from people on here who have taken it. What will you do if you get that information? Will you be writing the RX for the amount you want? Or will you be telling your neurologist you want this medication without knowing whether you can take it or not. Do you even know the types of seizures Keppra is used on?

I would have you ask your neurologist if he thinks there might be a different medication you can try which might have fewer side effects because the ones you are on do slow your body down and they do at times keep some people from having an erection.

Please check with your neuro first and get his thoughts. The medications you have named are but a few of the many medications out there that are AEDs. Depakote was released for use in the States in the early 1980's. I also know that hte FDA wanted another 7 years of research before they would release it, I know there were congressmen going out of the country and bringing it in for their kids. I sent the informaiton to my congressman. Who read my letter and additional information in the floor and in less than a week Depakote was released for sale. I also know it didn' work for me but I wanted it out because I knew it would help someone.

As for Keppra it is a good medication and it has helped my seizure count go down it does have it side effects as do all medications including asperin.

Re: Switching to Keppra - your experiences??

I was on lamictal then added in keppra. For me it didn't work very well and my seizures didn't improve, but not everyone is the same so it may work for you. If you do decide to be on keppra I would recommend taking a vitamin B supplement with it because keppra can cause irritability and the vitamin B actually helps that.

If you need a change, then I would strongly recommend cannabis (medical marijuana). I have had epilepsy for 10 years and been on so many different types of medications, but cannabis has helped me the most.

http://www.youtube.com/watch?v=dy_OfmEXTm4

Re: Switching to Keppra - your experiences??

My son is on keppra. The neuro tells me that is the best drug for epilepsy for those that can tolerate it. He was on 750 x2 it was to high, made him moody, cranky, over argumentative, fidgety. Lowered to 500 mg x2 and he himself, no reoccurrences, no side effects. I am pleased with the results. Best wishes

Re: Switching to Keppra - your experiences??

hi , yes ,you can switch medicine, must according to doctor advice, i dont know how to switch, but i can help you , i know a epilepsy professor , I can ask him. first I need to know your type of epilepsy ,and your recent medicine .

or you want consult him directly ,,

I am very happy to help you ,

Please let me know

Song

Re: Switching to Keppra - your experiences??

My adult son's neuro want to switch him to Keppra.  He's only been on phenytoin (Dilantin) for a month and things are going well.  They don't know why he had seizures, everything is clear, and they are suspecting PNS.  Why does the doctor want to change meds so quickly?  He told my son that phenytoin can cause liver damage, gum issues, etc.  but Keppra has it's own issues.  Any suggestions?

Re: Switching to Keppra - your experiences??

I suggest you try keppra the reason is below 

Dilantin was a good medication and it worked very good for me. But after taking it for 30 years I got toxic on it.

As for gum issues they are right. Considering it makes the gums fluctuate. They rise and fall which can and do keep stuff under them which causes tooth decay. Which ended up causing me to have partials made to my front lower teeth. Once I was taken off completely my gums receeded all the way back and my teeth were falling out you could see the roots to my teeth and I ended up having to have dentures made. As for seizures it controlled them well

Keppra is a better medication than dilantin. Dilantin is more of a downer and it works by calming the entire brain down and people are kinda drugged up when they are taking it. As for keppra and it's issue. All medications have side effects. Even the over the counter medications have them.

I have been taking keppra for about 10 years now. It is controlling my seizures well and not only that it has reduced the length of time in the seizure as well as the time to focus (get back to normal). I have and would recomend keppra is I am talking to people who are wanting information. As for people who will only take name brand. I could not afford the name brand but I also didn't want to come off a medicine that has done many thngs that have helped me. Doc's assistant has always been name brand only. Doc wanted to find out if the generic was as good since he had several patients on it and he also knew the cost. He wrote teh RX but I was to write down anything that was different or unusual in a diary. Yup those things I used when I was on a drug stude. Needless to say the generic worked fine and I have been on it for about 5 years now.

I hope this helps

Joe

Re: Switching to Keppra - your experiences??

I was diagnosed with sleep induced clonic tonics almost 5 years ago and Keppra was the first med I was ever on. I did have some problems in the beginning with irritability and I found that was a common side effect of the drug keppra. Well after a few months an extended release came out and I started on that and that took care of most of my anxiety.....it was great!! Then my husband got out of the military and I could no longer afford the xr's because a generic wasn't yet available. I tried a couple meds after that and continued to periodically suffer from seizures until the beginning of this year when a generic was released and once again I was able to start keppra again and I've been happy and seizure free ever since! Granted i'm on a pretty high dose and my anxiety does elevate from time to time but it's easier for me to contain a stressful situation or panic attack then to spend a week recooperating from a damn series of seizures! I love it and I'm glad i'm on it. So many seizure meds today work so well, and are so new, that the medical community can't even tell you yet why or how a lot of them work, they just know they work! I'm on keppra and tompomax for partials right now and my physician has no idea how they stop seizures, they just do. My point is that there are so many new meds that so much info is yet to be discovered. My mother has suffered from clonic tonics since she was 8 and was on phenobarbital most of her life and began having issues with tolerance of the drug as well. I feel like medicine moves so quickly and so often in positive manner than it was worth it to me when it came time to possibly switch my meds up. The thing I love about my Keppra is any depression my lyrica caused is now gone.....in fact I didn't realize how miserable I had been until coming off the lyrica. I have more energy and I feel like my mind is clearer than it has been in a few years and i'mvery greatful for this. SOmetimes your body just needs a giant kick in its butt to move I a different direction!

Re: Switching to Keppra - your experiences??

I've been on the leviteracitam since 2008 and also some oxcarbamezapine.  They're controlling my seizures completely.  I haven't had a seizure since March 2008.  The leviteracitam does cause moodiness/irritability, with female hormones, I think it makes it worse.  My neurologist works with my epileptologist from MN to help with that effect.  I was told to take a B complex vitamin and that would help offset the irritability, so I wouldn't bite someone's head off for nothing.  I has lessened that effect for me.

I had tried many of the medications that had been available up until 2008 such as dilantin, lamictal, neurontin, tegretol, and two others, which I can't remember right now.  All of them controlled the tonic/clonic, but I was still having the simple partials and complex partial seizures.  Some of these medications caused bad effects for me, like severe skin rashes, one wiped out my white blood cells, I was told to completely stop that medication (tegretol).  Usually I'm weaned off carefully, while slowing starting the new one.

I'm trying to get answers right now concerning the leveteracitam, if it had anything to do with the thyroid abnormalities I've been diagnosed with.  I read a study recently conerning that.  The medication for hypothyroidism can effect the oxcarb I take, so I'm being cautious right now.  My general doctor, neurologist, and epileptolgoist have to communicate with each other. 

Re: Switching to Keppra - your experiences??

I was on Keppra quite a while ago, the physical side effects were minimal but like many have said it can cause extreme depression and uncommonly make you very irritable and angry (infamous keppra rage). Though the side effects can be a nuicence my best experience has been with keppra out of the 3 med's I have tried, with the only reason I stopped taking it being that it wasn't the medication for my type of seizures and stopped working after 1.5-2 years.

 

PS: Nice Winston Churchhill quote, he's one of my favorite quoters only second to Albert Einstein :p.

Re: Switching to Keppra - your experiences??

Keppra – What People Are Saying…

To say the word “Keppra,” is to invite instant controversy. For some people it works, for some it doesn’t and for others, it’s a living nightmare.

Yet two different studies found that clinically significant behavioral consequences of Keppra were eight percent, no higher, and maybe even lower, than those reported for other new antiepileptic drugs.

John Gates, M.D., lead investigator of the adult study, neurologist at Minnesota Epilepsy Group and clinical professor of neurology at the University of Minnesota said: “The efficacy of Keppra in treating seizures, coupled with our findings of its low side-effect profile, makes it an option that should be considered, especially for those who have struggled with other treatments.”

Interestingly, both studies evaluated patients with epilepsy who were proven to be drug resistant to other medications.

When Keppra was approved as an add-on medicine for partial seizures, including partial seizures with secondary generalization, at the time, it was suggested that Keppra might have a universally positive effect on all seizure types.

That’s all fine and good for researchers who aren’t struggling with epilepsy every day. But here’s a random sampling of what real people – like you and me – have to say…

http://epilepsytalk.com/2010/10/15/keppra-%E2%80%93-what-people-are-sayi...

Phylis Feiner Johnson
www.epilepsytalk.com

Re: Switching to Keppra - your experiences??

Got seizures at 60.  Started on Keppra.  Took awhile to adjust to but did pretty good on it for about 3 years.  Doing so well I asked the doc if I could come off. No seizures/no nothing

So I slowly started lessening my dose.  Started feeling really depressed; then the seizures started again.  At first just nocturnal (woke up on the floor at night - fell out of bed).  But noticed that I also felt down, depressed.  Went back to my regular dose but it continued.  Now I'm at the point where the days i don't have to work I can barely get out of bed.  Angry, depressed all the time.  The only positive is that finally, I think, I know what my triggers are.  Stress and dreading things.  I'm a fed worker who was furloughed.  The first day of furlough I woke up with my eye swollen shut.  After putting cold compresses for a day it wasn't any better so I went to urgent care.  Sitting on their table I remember her giving me the blood pressure numbers and that was it.  Next thing I was surrounded by EMS yelling at me (standard) and wanting to take me to the hospital.  I had a seizure on their table; the nurse said i was unresponsive.  I declined to go to the hospital  Eye instantly got better

After that I looked back at the other seizures I had and realized every time there was a trigger, something I was stressing over or really didn't want to do.  Now that I know that hopefully I can avoid it.  But now my newest problem is one or both eyes start twitching when I'm under stress.

I can conclude that Keppra isn' working for me anymore.  I'm tired of being so unhappy all the time; down, angry, the things I used to enjoy don't hold any joy for me anymore.  But can I afford to switch to something else; not right now.  Keep in mind with any new med comes new side effects.  A new one may very well knock me flat on my back, give me side effects that mean I can't drive anymore and if I can't drive I can't work and then can't afford anything.

So I'm making peace with the devil for right now.  Similarly, my daughter has had epilepsy much longer than I have (20+ years) already conclulded there is no cure for her either.  She takes the meds (not keppra) and just tries to stick with the one that causes the least side effects.

 

good luck

L

Re: Switching to Keppra - your experiences??

Moody, irritable, ready to bite your head off for no reason whatsoever. It didn't seem to help my seizures either. I didn't stay on it very long because of those reasons.