Help Me Wean Off Keppra XR

[sicily726]

Hi. Just like every anti-epileptic drug I ever took, Keppra XR is ruining my life. I would very much prefer to have seizures. I've gone round and round about this with my neurologist. I got depression, anxiety, insomnia, angry outbursts, thoughts of suicide and dying on this drug. I am sick of it. I used to be a happy person with seizures all the time. Now, I am a miserable person with fewer seizures. I am sick of the drugs. NO MORE DRUGS!

I want to wean myself off of Keppra XR as safely as possible.

I take 1500 mg in the am and 1500 mg in the pm

If I wean myself 250 mg at a time, for two weeks at a time, starting with my night time dose, will I avoid status epilepticus?

[epileric]

No matter how slowly you ween yourself off of keppra you will have problems once your blood levels are low enough.

You should find another way of controlling your seizures before you take yourself off Keppra, not after. Consider the alternative treatments http://www.coping-with-epilepsy.com/...ive-treatments

I do know how you feel though. I was on Keppra & had the same symptoms as well as not being able to concentrate enough to read the paper. I also spent more than twice as long on this site because I"d have to keep re-reading things to remember or understand them.

Were the side-effects of other anti-epileptic drugs you've tried just as extreme? If not maybe you can go back on one of them until finding another way of keeping your seizures under control.

[sicily726]

Thanks Epileric. I see you live in Victoria, BC,Canada. You are so lucky to live in a country that has medical care for all. Here in the United States, people like me (low income and uninsured) do not get the health care and medicines they need. I checked your alternatives out and, unfortunately, people like me, who've very little $$ and no health insurance, can't get such alternatives. Although I am grateful for your kind advice, I know I can't do this Keppra anymore. I'll just get fired from my new part time job if I fly into another rage from Keppra at work. If I stop the Keppra, instead, and have seizures at work, instead, they can't fire me. Right?

[epileric]

I think you'd know better than me whether you can get fired for having a seizure. That seems to depend on where you live. What I've found is that I've never been fired for being epileptic but other "reasons" seem to come up very soon after my epilepsy becomes common knowledge.

As far as preventing rages at work I would recommend Cognitive Behavioural Therapy. It does help but I don't know if it is affordable to you.

I Know many people here have used a Vitamine B6 supplement to help with the anger caused by Keppra. I've found that when I regularly worked out at the gym greatly helped my mental & emotional self (though I wasn't on Keppra).

What might also help (& be a bit cheaper) is doing regular breathing exercises, morning & evening as well as meditation and/or yoga. They do help with focus & hopefully that would also help the emotions.

As well I'd really try hard to get your neurologist to understand how extreme the side-effects are & that they're doing more to ruin your life than the seizures themselves.

Also, I forgot to say Welcome to the forum. You'll see soon that many others have been (or are going) through similar issues.

[sicily726]

You are so very kind, Epileric. Thank you for the welcome. I never got fired from a job until Keppra came into my life. In my experience, each and every anti-epileptic drug I ever took was worse than the seizures. But when the seizures got so bad, and would not stop, I hopped on the anti-epileptic drug merry go round again. And here I am. It's 5:07 a.m. here in Cleveland, Ohio, USA. Keppra XR causes insomnia, among other terrible things. I am bound and determined to get off of this drug. I'm calling the neurologist in the am. In the meantime, I began B-complex vitamins because I read about that, which includes 100 mg of B-6 (5000% of the "daily value" that they call it here in the US). This is horrible. Nobody should have to "live" like this. What do you take? What kinds of seizures do you have?

[epileric]

Something that I forgot to mention is that vitamine C is needed for any B vitamines to be absorbed so you might want to take some C as well.

Meanwhile good luck with the Neurologist.

[Nakamova]

Hi Sicily --

Unfortunately the ideal of no seizures/no side effects seems out of reach for most of us. I'm sorry it's been such a Hell for you. Definitely keep your neurologist informed about weaning off Keppra -- there's no way to predict whether status epilepticus might occur. Your neurologist will probably recommend tapering on to a different drug at the same time as you are tapering off of the Keppra. For most drugs, the tapering off period is anywhere from a for a few weeks to a few months, but I would recommend that you go as slowly as possible. I think the body needs a longer time to adjust to each lower threshold, and is sensitive to even tiny amounts of meds in the system.

And I agree with Eric above about the alternative treatment techniques to try that don't require a doctor. Basic relaxation exercises -- even for just a half hour a day -- can make a difference. There's a book called "Epilepsy: A New Approach -- What medicine can do for you, what you can do for yourself". It's a great resource, you can probably find a inexpensive copy on Amazon.

Best,
Nakamova

[matchu]

I was taken off of Keppra when told I was having psuedo seizures, no weening off just stopped! I was taking 3000mg keppra xr! I still have seizures but since nothing showed up when while being monitored in the hospital, the doctor took me off and I have not even heard from my neurologist. Not one peep from him.

[KelVarQ]

Hi Siciliy,

I weaned myself off Keppra (not XR) 4 months ago and haven't taken anything since due to everything you talk about. However, I really DON'T recommend weaning off without talking to your doctor. I was only on a very low dose 500mg daily (250mg.am and 250mg.pm) and still weaned off slowly. Yes, my seizures started again but I'm only having brief small ones in my sleep (not every night) and my husband sleeps right next to me who ensures all is well. I don't know your situation and if you have someone there, but I do know it's not good to wean yourself off and YES I was wrong for doing it, but again I know my seizures and my husband knows them even better. It also took me 3 months to see any positive turn around from being off the med. So even if you get off the med you may still experience side effects for a little while. Yes, the med is out of your system but it takes time for your system to adjust back. Just be careful and please talk to you neurologist.

[Cint]

Hi Sicily and Welcome,

I am currently taking 3000 mg. Keppra along with Topomax, and yes it does have side effects, as do most of the other drugs. Depression is a well known side effect of Keppra, so you need to tell your dr. ASAP about your thoughts of suicide! I've tried so many of the anti-epileptic drug's to the point where I was a zombie, couldn't function, however the seizures increasingly worsened over the years. Once I tried to stop Tegretol and ended up in the hospital because I went status.
Talk to your dr. before stopping the medicine.
I also had a left temporal lobectomy, to no avail, and because of that surgery, I am now taking anti-depressants along with the anti-epileptic drugs. Then I had the Vagus Nerve Stimulator, and I still experience seizures on occasion.

I hope you find something that works for you.

[sicily726]

There are no words to express the gratitude I feel for the advice and support you people have lent me in here. Called the neurologist's office; she's supposed to call me back. Cindy, I am sorry that you've tried EVERYTHING without a more positive outcome. Your experiences are why I don't want to continue this madness.

[RobinN]

Sicily - Welcome
We tried four meds with my daughter, and the side effects were unacceptable to us. We have found much better control by making nutritional changes, and working to figure out why the seizures are occuring. Rather than just using meds as a bandaid. My opinion of course.

Seizures were not improved for my daughter while taking meds. They have been while learning alternative therapies, or increasing her seizure threshold.

[sicily726]

Thanks Robin. Congrats on your daughter's improvement with alternative therapies. The neurologist called me back. I'll be seeing her on the 17th. I am going to bring with me the non-drug alternatives I found here in this forum, e.g., neurofeedback and neurobehavioral/cognitive behavioral therapy. We will see. BTW, you people in here ROCK!

[matchu]

be prepared for a blank stare, as I found some peeps here know a lot more than my neurologist does. He doesn't know what psuedoseizures are, or Non epileptic activity disorder.

[epileric]

Some neurologists accept various alternative therapies and some don't but I haven't met one yet that is well informed on them or familiar with how to implement them.

With their training in Western Medicine they don't seem to know much else other than mostly medications and some diets, usually the ketogenic diet.

[Sheri]

I understand exactly what you are going through. Me too. Let us know how the apt. goes.

[Bernard]

Hi sicily726, welcome to the forum.

"Kepprage" can be mitigated by vitamin B6 supplements. I would highly recommend trying that before self-weaning off of the Keppra.

[Bernard]

I was taken off of Keppra when told I was having psuedo seizures, no weening off just stopped!

... and I have not even heard from my neurologist. Not one peep from him.

Sounds like you need to get another neurologist.

[matchu]

can't afford one, my primary was concerned that I was discharged from the hospital with out any follow up from a neurologist. He was quite upset. I can only assume my case is just not severe enough to warrant his precious time. I really don't want to go through all the same crap all over again. Just to defend myself again it is overwhelming to say the least.

[higg99]

Hello,
I am also taking keppra and it gets annoying sometimes. Taking some extra time for naps and pretty much babying myself like with any illness, when it's possible and sleeping all night help me the most with side effects. I also take a B6+B12 combo from trader joes ($7) that seems to help. You have to take B vitamins sublingually though, under the tongue because it is destroyed in the intestines. I feel like the medicine works OK but it's much less effective when I am sick or tired. I have noticed more memory problems as well and it's hard to concentrate, I can forget something a few times in a row which is embarrassing at my job. My other great complaint are the drowsiness, and it seems like my immunity is weaker. I do not think it affects my mood and it really does help with the complex partial seizures, every so often I can feel a partial, like my eyes have rolled up a few times or I feel some shaking on one side of my body but, I don't completely stiffen and shoot out an arm or both my legs like before. I also stopped blurting out embarrassing stuff once I got on the medication which is NICE. Before treatment when a seizure was starting my aura was like a panic attack with a sick feeling of doom in my gut followed by confusion and fatigue the rest of the day, I was misdiagnosed with both anxiety and depression at different points until I was finally having worse and worse seizures and went to a neurologist. Because of that coming to an end I feel like my emotions are much better with the keppra, and I feel thankful there are any treatments for this. I spoke to another teacher who had focal seizures in college, and she said her father was a physician, and he had her take her medicine at night and sleep allot, also manage her stress better and after 2 years she was able to get off medication, so I'm hoping to be so fortunate.