Epilepsy Talk
Keppra – What People Are Saying… | October 15, 2010
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…
The Good…
“KEPPRA HAS SAVED MY LIFE, LITERALLY! If you’re not on Keppra, I’d talk to your doc. Ever since I’ve been on Keppra, I’ve had a 96% seizure reduction rate.”
“I took three medications for eleven years before I was finally given Keppra. I have been seizure free for three years now.”
“I have experienced very, very few partial seizures. I have been taking Keppra since two and a half years now without skipping even one day. I have not had even one ‘confirmed’ seizure since I have been on Keppra and I cannot begin to tell you how very happy I am.”
“Studies that I have read state that mood problems, rages, and suicidal thoughts while taking Keppra are increased if the individual has had previous diagnosis of a mood disorder (depression, bipolar, etc…), however, the side-effect is rare if there are no pre-existing mood disorders. I have had previous issues with anxiety/panic attacks (not seizure related), and I have had no mood side-effects from Keppra.”
“Using Keppra has even helped me to get out of the deep sense of gloominess and uneasiness that I had felt when I was on Depakote all those years.”
“Keppra has been a Godsend drug for me. Seizure meds are a lot like E itself…so different from person to person. It’s important to be aware of side-effects of the drugs so you know what to look for….but don’t let that overcome what the drug could do for you personally.”
The Bad
The list of disturbing side-effects is endless: fatigue, weakness, lack of coordination, mood or behavior changes, depression, anxiety, hostility, restlessness, agitation, hyperactivity (mentally or physically) and the frightening possibilities of having suicidal thoughts or actions.
“Do not mention the name of Keppra in front of me as I get very annoyed and pissed off. It did nothing to me other than increasing my woes.”
“On Keppra, I was depressed and so fatigued I couldn’t see the point of doing anything, much less living. I couldn’t really remember what day it was.”
“The doctor put me on Keppra which did not work so well with me….I have the funny “electric shock” sensations, terrible memory (and I have an excellent memory) to the point I have to write everything down.”
“I have been on Keppra for the past five weeks and my reactions to this drug are dreadful, taking into consideration that I am by nature a very cool and collected person. When I had Keppra, I suffered mood swings from one extreme to the other. I was getting touchy, short-tempered and even turned pretty violent at times. I also felt very tired and unsteady. I read many reviews on the drug and I had started wondering if I was the only one who suffered such terrible effects, and if so, I was wondering if there was something the matter with me and not the drug. You know I am really glad to know that I am not alone with the Keppra side effects.”
The Ugly
We all know about “Keppra Rage” and the harmful effects it can have both physically and mentally. Hopefully, you’ll never undergo what these people experienced…
“My husband was prescribed Keppra about five months back and I tell you, they were some of the most terrible days of our lives. It was pretty effective initially and as the dose was increased the reactions became terrible and unbearable. He felt he was always getting funny feelings, like he was beginning to get a spasm and he was, in reality, getting seizures at every fifteen to thirty minute intervals. After many rounds of talks with the doctor they finally stopped Keppra and within a week, my husband was beginning to feel much better. In my opinion, the drug was practically crucifying my husband in gradual doses. I really think that the FDA must stop its circulation and take this drug out of the market.”
“I have seen people before my eyes taking such drastic steps. How can this drug be good? It drives you crazy and insane, gives you such depression attacks until you decide to end your life. And all this is very much true, you see. I was on anti-seizure drugs before, like Phenobarbital, but nothing felt like Keppra. What use is a drug that makes you end your life? “
“This medication was given to my husband and he had a severe hostile reaction to it. He wound up in jail for family violence. I would recommend a thorough review of all medications and interactions with medications before taking it.”
“I was put on Keppra and it almost killed me. Initially, I started getting terribly despondent as soon as I started the drug and I reached a stage where I was crying uncontrollably all the time the whole month. I became so terribly depressed that I finally reduced around fifteen pounds and turned into a complete nervous wreck. I tried to commit suicide twice and was some how saved in time.”
“Keppra helped with seizure activity, but the personality changes, anger, hostility, irrational judgments, were worse than the seizures. It has been a living hell. I am the mother and it has been a heart crushing, emotionally draining experience.”
“My husband was put on this ‘drug’ while in the hospital. His personality changed so rapidly and violently that he had to be restrained in his hospital bed. He started having tremors of the arms and legs and physically assaulted me and one of the nurses on duty. He had hallucinations and tore the IV out of his arms because he thought that they were spiders crawling up his arms. All the medical staff said that it was because of the Keppra…. this medication turned him into a raving maniac.”
The Worst
The Keppra generic seizure drug – Levetiracetam – is contributing to more seizures, side-effects and even DEATH!
Patients are experiencing recurring and on-going seizures that did not occur while they were on Keppra. There have been cases of injuries from the drug. At least 49% of patients noted more severe side-effects such as vomiting and weakness. And, on top of the usual side effects, more intense ones have been documented such as psychotic episodes.
Conclusion
“I get so many emails per day regarding this drug Keppra. So much stuff is written about it that I sometimes wonder how much of it is true and how much is not. You need to have some proof and evidence before you can take the authority of commenting on any drug. In the case of Keppra, I felt that it had diverse reactions on people. Each one had a different opinion. For some it works and for others, it did not. Many of your loved ones may be on this drug, so my only advice to you will be to know the drug properly before making any big decision.”
Another article you might be interested in reading:
Keppra Generic Seizure Drug Contributing to More Seizures, Side Effects and Death
To subscribe to Epilepsytalk.com and get the latest articles, go to the bottom box of the right column and click on “Sign me up!”
Resources:
Keppra Patients Themselves
http://www.healthsofa.com/medications/keppra
http://www.drugs.com/comments/levetiracetam/keppra-for-seizures.html
http://www.rxlist.com/keppra-drug-patient.htm#important
http://www.rxlist.com/script/main/rxlist_view_comments.asp?drug=keppra&questionid=fdb18053_pem
http://www.docguide.com/news/content.nsf/news/8525697700573E1885256C8B00542CA8
http://www.drugs.com/keppra.html
Tags: bad, controversy, Epilepsy, good, Keppra, real people, ugly
113 Comments »
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Phylis, was it your husband that had to be restrained or was that an e-mail that you received.
I am on Keppra. The first prescription, my neuro told me to take Vitamim B Complex once a day. I have and I have not had the bad side effects that others have had.
It has stopped my seizures dramactically. I am glad that I am on it.
Comment by Ruth Brown — October 15, 2010 @ 7:32 AM
Not to worry Ruth…these were quotes from OTHER people. Good that you’re taking a Vitamin-B complex. That’s the heavy hitter in the vitamin-epilepsy world! Along with your Vitamin D. Even happier that Keppra has had positive effects for you. It’s such a crap shoot with these meds…
Comment by Phylis Feiner Johnson — October 15, 2010 @ 7:13 PM
I take Keppra (500 mg/2 x day) and Dilantin (400 mg/day). I have developed osteoporosis, so my doc and I are discussing dropping the Dilantin and increasing the Keppra. Anyone have experience with this (has it been successful)? Since going on Keppra a year ago I developed a number of side effects (no appetite, fatigue, loss of balance, mood disorders). The drug does reduce my seizure activity. But I’m wondering if I’m predisposed to having side effects from this drug, especially if the dose is increased. Comments anyone?
Comment by Tom Waltz — October 15, 2010 @ 10:42 AM
Well, good that the Dilantin is going. None of us — man or woman — can afford bone loss. But I would question increasing the dose of Keppra.
You’ve already been on Keppra for a year and had these side-effects. Maybe having it as a monotherapy will improve things. But I doubt it.
If it was me, I would keep a diary, tracking when you take your meds, when and how the side-effects happen…what exactly each side-effect is…and their duration.
Then go with the diary to the doc and present your concerns about the Keppra side-effects and surely, you’ll be able to figure out a therapy that works for you without such miserable consequences…
Comment by Phylis Feiner Johnson — October 15, 2010 @ 7:24 PM
I’m on Keppra Twice a day 1000mg and I take a prenatal Vitamin. Plus B12 twice a day. With no side effects. A small seizure once or twice a month. No other side effects.
Comment by d — December 13, 2012 @ 10:20 PM
Good for you! Vitamin B is literally “brain food”. To increase the effectiveness of what you’re taking, I would suggest a B-50 B complex, 2x a day with food.
Brain Food for Your Health…
http://epilepsytalk.com/2011/06/21/brain-food-for-your-health%e2%80%a6/
Comment by Phylis Feiner Johnson — December 14, 2012 @ 8:27 AM
I tried the keppra did not work for me. I dont remember the did effects but I was taken of them, later to be put on eitheor something. But I did start out with Dilantain no good, lamicatal im on now with depakote not working, will try vitamin D and E. I dont like the side effects of the two mixed drugs, lots Auras, just really weired crazy feeling I did not have until i start taking these crazy drugs. I have nausea, attitude prob, not myself, cant work. Every Med each its on.
Comment by Emauel Brown — November 12, 2010 @ 7:40 AM
For me, Dilantin was a nightmare. After many tries, I found Lamictal and, combined with Klonopin, that has been the mix for me.
As for vitamins, try taking 500 MG of Magnesium to help absorb the Vitamin D.
I hope the Lamictal works as well for you as it has for me!
Comment by Phylis Feiner Johnson — November 12, 2010 @ 7:58 AM
I too am taking Lamicatal and Klonopin (both generic). I want to stop the Klonopin because I want to have another baby and frankly got tire of being exhausted all the time. Problem is I had another seizure after being seizure free for a long time (about 3 years) after trying to reduce the Klonopin. The new doc added a small dose of Keppra to help stop the seizures. the inital dizziness is going away but I’m still pretty tired. I’m hoping the new doc can help get to the bottom of the problem. I don’t feel like I’ve had definite answers to what is going on.
Comment by Tennille — November 30, 2010 @ 11:07 AM
Since August of this year I have been on seizure meds resulting from a severe concussion I got while attacked two and a half years ago. I had my first seizure, which they told me was a complex partial seizure. Initially I was given Dilantin. I didn’t have seizures, but it made me feel like a zombie, and it made me very clumsy. I have since started taking Keppra, or rather the generic version. 500mg 2x a day. It has been really good for me. No more seizures. The only side effects that I have noticed are a bit of a decreased appetite, and what could only be described as “phantom vibrations.” It’s like I feel parts of my body vibrating at times very slightly. Almost, like a cell phone set to vibrate. Other than that, it’s been all good, and I plan on staying on it.
Comment by radstuffforall — November 13, 2010 @ 6:10 AM
I was a zombie on Dilantin also. And it took me a LONG time to find my “magic med mix.”
For me, that turned out to be Lamictal and Klonopin, but I didn’t have a severe head injury.
I’m real glad the Keppra is working for you!
For an interesting on brain injury and seizures, go to:
http://www.braininjury.com/seizuresandheadinjury.html
Comment by Phylis Feiner Johnson — November 13, 2010 @ 7:17 AM
The phantom vibrating mentioned has been a side effect (among others) I experience too (right at my waist line). First I thought it was my cell phone on my belt. When I went to answer it, there was no phone.
Comment by Tom Waltz — November 13, 2010 @ 10:00 AM
I too have had tingling in the legs related to Keppra; neuro thought it was RLS, but am pretty sure it’s a side effect. Hope/pray it has not lasting effect on synapses or molecular activity…
Comment by keefer — April 5, 2013 @ 1:26 PM
[...] Keppra – What People Are Saying… | October 15, 2010 [...]
Pingback by Keppra – What People Are Saying… « Epilepsy Talk | Radstuffforall's Blog — November 13, 2010 @ 6:19 AM
Phylis,I have a question about Keppra? Since I have been on Keppra, I have noticed that I am having bone fractures. Would you please do research to see if it causes fractures?
Comment by ruth brown — January 16, 2011 @ 1:14 AM
According to http://www.ehealthme.com/ds/keppra/osteoporosis
“On Jan, 14, 2011: 12,275 people reported to have side effects when taking Keppra. Among them, 34 people (0.28%) have Osteoporosis.
Time on Keppra when people have Osteoporosis most often appears to be between months 1-6 and then again from years 1-5.”
That was the only info I could find. How long have you been on Keppra, Ruth?
Comment by Phylis Feiner Johnson — January 16, 2011 @ 3:16 AM
For those who like me are not epileptic and by chance are taking either one of these two poisons, read this.
I just had a minor scare of a convulsion, that resulted in no meninges inflammation and then abducted illegally in a Hospital for 15 days.
Just take Vitamins B6, D and K. Your central nervous system is gonna be grateful 4 ever. Do not take the B-complex. That combination takes away all the properties and effectiveness of B6 and B12.
Take care all.
Comment by Peter Meca — May 13, 2011 @ 1:38 PM
Wow Peter, that experience sounds really scary.
On the other hand, thanks for the valuable vitamin info. It’s definitely “news we can use!”
Comment by Phylis Feiner Johnson — May 13, 2011 @ 1:53 PM
My mother-inlaw has partials then tonic clinic and keppra works well for her. No seizures for 5 years.
Me, not so lucky. I’ve been on keppra, neurontin and vitamin B for 9 months now and truely have all those side effects you mentioned. I have lost 30 lbs. I’m 5’4″ and now weigh 98 lbs.
My husband has threatened to leave me many times. My kids are afraid of me. No one knows when I will “go off” And the guilt afterward is when the “bad” thoughts start. We live in a rural area and do have shotguns, my husband has taken them away in fear that I might use them.
Without any meds I have 20 – 30 seizures a day. With the meds I’m on now I’ve been having 15 – 20 a day. These are simple and complex partials. I still can’t drive or work so I don’t see why I should put up with the bad for a very slight bit of good. I’m usually a happy person! No history of depression.
My doc is aware and concerned. However, I don’t have health ins and get my meda through PAP so it’s a long process to change
Comment by cmaclean44 — July 7, 2011 @ 5:07 PM
I don’t know what PAP medical coverage is but clearly you need to change meds, PRONTO!
Here’s a link that may help you…
No-Cost & Low-Cost Health Insurance
http://epilepsytalk.com/2011/01/12/no-cost-low-cost-medical-insurance/
And maybe this can help, too…
FREE Prescription Drugs
http://epilepsytalk.com/2010/10/08/free-prescription-drugs/
Comment by Phylis Feiner Johnson — July 7, 2011 @ 7:36 PM
I’m on the max dose of Keppra. I know the Keppra rage, so I take anxiety meds along with it. Works for me. My problem is if I miss a dose I end up in the e.r. or jail. It reduces my brain pain to such a level That I dont want to stop taking it. I tried titrating to topamax and thought my brain would explode!
Comment by Beth ONeil — September 9, 2011 @ 2:09 PM
Ending up in the ER or jail is a pretty heavy price to pay! Have you considered Lamictal or Klonpin to calm you down?
At its lowest rate, Lamictal is an anti-depressant. At its next level, it’s both an anti-depressant AND an anti-seizure med. And at its highest level, it’s for bipolar people.
Klonopin is basically an anti-anxiety drug that’s pretty long acting.
Hope this helps…
Comment by Phylis Feiner Johnson — September 9, 2011 @ 4:09 PM
I am taking 3,250 MG of Keppra per day, (1,250 0600, 750 1200, and 1,250 1800hrs). Lamictal 450 MG per day (150 0600, 100 1200, 100 1800, and 100 2300hrs.
I am still having seizures after over 2 years. Sometimes nothing for 5 months but then they will come back. I am going crazy, please someone help me, the doctors are alwyays guessing, I need good info that can help me. Thank you.
Comment by Ingeborg m. Di Ciccio — September 12, 2011 @ 7:37 AM
Look into a Ketogenic diet for resistant seizures. It is a huge lifestyle change but it works wonders for some people. Talk to your Doc. about it
Comment by petrachowmouse — April 24, 2013 @ 11:04 PM
A VERY good idea!
If the Ketogenic diet is too tough, you might find the Modified Atkins Diet (MAD) more user-friendly.
You can read about all three here:
Three Anti-Seizure Diets That Could Change Your Life…
http://epilepsytalk.com/2009/10/04/eating-well-is-the-best-revenge/
Comment by Phylis Feiner Johnson — April 25, 2013 @ 8:41 AM
Sounds like your docs are taking the easy way out. Just pile them up with pills. Perhaps further testing is needed to pin down the exact area of your seizures.
This article might help: “Beyond EEGs…Diagnostic Tools for Epilepsy”
http://epilepsytalk.com/?s=diagnostic+testing
And, if you live in the U.S. here’s a “Newly Updated Comprehensive List of GOOD Neurologists…Epileptologists…Neurosurgeons…and Pediatric Doctors”
http://epilepsytalk.com/2011/05/03/newly-updated-comprehensive-list-of-good-neurologists%e2%80%a6epileptologists%e2%80%a6neurosurgeons%e2%80%a6and-pediatric-doctors-2/
I hope this helps. Please let me know how do and any other way we can help you.
Comment by Phylis Feiner Johnson — September 13, 2011 @ 12:55 PM
I have been taking Keppra for 11 yrs. My concern is poor memory it bothers me a lot not being able to remember small things and I used to sing but cannot remember a whole song. Also I have depression and at times it can get overwhelming I take celexa 20 mg but at times my outlook is still very bleak. And I have osteo arthritis. Any suggestions?
Jodi
Comment by Jodi — October 17, 2011 @ 1:12 AM
Jodi, there are so many add-on meds available, there’s no reason why you should suffer.
Even though no two people are alike, I take Klonopin and sometimes Xanax and it works like a dream.
Comment by Phylis Feiner Johnson — October 17, 2011 @ 2:30 PM
I take 1500 mg keppra 2x per day, is that a lot? I feel suicidal 2 or 3 times a week, always tired. I think I had a seizure of being catatonic for about 50 minutes a week ago, is that possible? I’m getting a new epileptologist in Nov., so I’ll ask her, but I would like to hear what others think. I just discovered this site, it’s great, thank you.
Comment by Steve — October 17, 2011 @ 7:19 AM
Partial Onset Seizures
Adults 16 Years And Older
In clinical trials, daily doses of 1000 mg, 2000 mg, and 3000 mg, given as twice-daily dosing, were shown to be effective. Although in some studies there was a tendency toward greater response with higher dose (see CLINICAL STUDIES), a consistent increase in response with increased dose has not been shown.
Treatment should be initiated with a daily dose of 1000 mg/day, given as twice-daily dosing (500 mg BID). Additional dosing increments may be given (1000 mg/day additional every 2 weeks) to a maximum recommended daily dose of 3000 mg. Doses greater than 3000 mg/day have been used in open-label studies for periods of 6 months and longer. There is no evidence that doses greater than 3000 mg/day confer additional benefit.
http://www.drugs.com/dosage/keppra.html
Nonetheless, feeling suicidal is NOT great.
Try keeping a daily seizure diary, noting sleep patterns, what you eat, your daily activities (including upsetting ones), how you feel before a seizure (triggers? auras?), during a seizure, the duration of the seizure and how you feel afterwards.
This will at least give a clue to the new doc of what you’re going through…
Good luck!!!
Comment by Phylis Feiner Johnson — October 17, 2011 @ 2:26 PM
I have taken Keppra for years now and am on the maximum amount 4000 mg of Keppra each morning, 400 mg of Lamictal morning and night, and 100 mg of Zoloft each morning…it has greatly reduced my seizures, but not completely, I haven’t had any side effects…I would love to get off of some of the meds, I have taken litterally EVERYTHING out there and it never worked until this…I even have the VNS and it has helped a little, I’ve not even had it a year though so we have to experiment on the voltage and frequency…I would LOVE to get off or reduce the Keppra, but if I miss one pill I am garaunteed to have a grand mal within an hour or two…
Comment by Laura — October 17, 2011 @ 3:32 PM
Perhaps you should consider:
Continuous Video EEG Monitoring – studies the brain waves over time. This can be accomplished through continuous Video EEG Monitoring, where a patient stays in a special unit for at least 24 hours. Antiepileptic medication is stopped for the duration of this test, since the objective is for seizures to occur so the abnormal brain waves they produce can be recorded.
A video camera connected to the EEG provides constant monitoring, enabling the medical team to pinpoint the area where a seizure occurs and track the patient’s physiological response to the seizure. Continuous monitoring can also help distinguish between epilepsy and other conditions. It can characterize the seizure type for more precise medication adjustments and locate the originating area of seizures within the brain.
Comment by Phylis Feiner Johnson — October 17, 2011 @ 4:07 PM
my son is on keppra and 4 other meds but he is really disabled but i dont think he has any side affects but we just found out his hip is out of place not sure if its from the meds he is on.
Comment by kelly solly — October 17, 2011 @ 8:21 PM
I’m not a doc, but I don’t think so…
Comment by Phylis Feiner Johnson — October 17, 2011 @ 10:29 PM
My 16 y/o son was on Keppra in addition to Tegretol, Tripleptal, Epilim & Respiridone. His seizures increased by probably 90% within days. He had approx 12 drop seizures per day – and the resulting injuries from that alone were just awful… skin off knees, elbows, hand & face constantly. He wasn’t having too many t/c seizures before this, but after starting on it he was having follow on seizures so there was never just one. He is now off Keppra with an Epilim increase which has side affect (I believe anyway) of constant dribbling.
Comment by Rachelle — November 28, 2011 @ 8:59 AM
I’m no doc, but with or without Keppra, it sounds like he’s on an awful lot of drugs.
Has he had his blood levels checked regularly?
Comment by Phylis Feiner Johnson — November 28, 2011 @ 12:51 PM
hi! had a seizure at 38 years, 46 years and now at 48 years old..what we have noticed now is these 3 times my period lasted more then 12 days…docs are going the hormone route to see if there is a connection and they think its premenopausal syndrome-great!
right now i’m taking 1 keppra(750) and 2 dilantins in the a.m.(100each) nightime 1,000 of keppra…however docs feel there is a a connection with long menstruations and seizures…
Comment by Marge — December 2, 2011 @ 8:49 PM
Hi, im only 16 and my period started lasting too long or start early and before i ‘come on’ i found i would be having seizures
Comment by Elly — November 8, 2012 @ 7:21 AM
marge again– just want to reiterate…if i skip a period then bleed heavily the next month i have to be extra careful…i think docs are getting closer to my problem…
Comment by Marge — December 2, 2011 @ 8:54 PM
It could be hormonal…have you had a full hormone screening done? (The thorough kind that an endocrinologist gives.)
This hormone blood test for women evaluates hormonal balance in both pre-and post-menopausal women, using a single blood sample. It looks at:
•Three estrogens – The balance of estrone, estradiol, and estriol.
•Progesterone – This hormone rises and falls during the menstrual cycle, influencing fertility and PMS, and after menopause it modulates the effects of estrogens
•Two androgens – Both testosterone and DHEA affect sexual function, body composition, and cognition
•Estrogen metabolites.
Another possibility is Catamenial Epilepsy.
Catamenial epilepsy refers to a pattern of seizure clustering that is related to the menstrual cycle. It does not describe a seizure localization, seizure type, or epilepsy syndrome. Catamenial seizure clusters have been described with every seizure type and epilepsy syndrome.
The definition of catamenial epilepsy has varied among investigators. The most accepted criterion requires a doubling of a baseline seizure frequency during a specific phase of the menstrual cycle.
Take a look at Catamenial Epilepsy – Do You Have It?
http://epilepsytalk.com/2011/08/07/catamenial-epilepsy-%e2%80%93-do-you-have-it/
I hope this helps you rather than confusing you!
Comment by Phylis Feiner Johnson — December 2, 2011 @ 9:45 PM
My son had a brain tumor removed with msjor seizures. His doctor has increased Keppra from 1000mg daily to 2000mg a day. Tonight was the worst. I have not been able to work and am self employed and not paid if I don’t work. I worked all day today for the 1st time since surgery (1 month) and left him with supervision all day.I came home he blew up said he was going to run away, I cared more about work than taking care of him, he has been in his room. I have to keep utilities on and his dad us a dead beat dad. I blamed myself then I found this website. Someone please give me advise I’m so scared he’s 15 but still my baby.
Comment by Sherri — January 14, 2012 @ 8:04 AM
Welcome Sherri,
First of all, hormones aren’t helping his situation any.
But that being said, the brain surgery should have been more successful that that.
There’s a man on this website (who’s wonderful) who had botched brain surgery about 14 years ago and then very successful brain surgery (at NYU) 2 years ago.
I know Charlie takes Phenobarbital, but I don’t remember the other med he takes for stability. (Dilantin?)
But I’ve just emailed him for advice.
It’s clear your son isn’t on the correct med regime and your neuro must be a block head not to see that.
Is your neuro connected to your neurosurgeon? If not, perhaps someone else should be consulted about your son.
Comment by Phylis Feiner Johnson — January 14, 2012 @ 2:48 PM
Sherri, I just spoke to Charlie and here’s what he said:
I was on Keppra before surgery and my wife says I was explosive. When I started seeing Dr Pacia in NYC he immediately weaned me off it. I was taking 3500 mg.
He also took me off 3 other meds. The only drug I take now is lamictal (600mg) and a little (90mg) of Phenobarbitol.
Please tell her not to give up and hang in there. (Who knows,maybe it’s the Dr that’s the problem and not the meds)
Comment by Phylis Feiner Johnson — January 14, 2012 @ 8:33 PM
[...] To find out what others think and have to say about Keppra, go to: Keppra — What People Are Saying http://epilepsytalk.com/2010/10/15/keppra-%E2%80%93-what-people-are-saying%E2%80%A6-2/ [...]
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Pingback by Keppra – What People Are Saying… « epilepsyconnection — July 28, 2012 @ 11:41 AM
HI was wondering if you could adivse me please my daughter is 4 she started keppra a week ago 1ml x twice aday then on saturday she went 2ml x twice aday shes noe started wetting her self all day were as before the keppra had stopped her wetting herself when she has a seizure.
Comment by sarah — August 12, 2012 @ 2:45 PM
Perhaps you should call your neuro and ask if you could go back to the previous level.
Here are some moms with similar problems. One switched to Lamictal (which is VERY different from Keppra).
http://www.circleofmoms.com/moms-of-epilepticseizure-disorder-kids/urinary-incontinence-with-keppra-or-zonisamide-545512#_
Apparently urinary incontinence is one of the side effects. The question is, at what dose? (I suspect it’s individual for each child.)
Comment by Phylis Feiner Johnson — August 12, 2012 @ 5:25 PM
Is incontinence just a side effect with children or is it also a side effect in adults.
Comment by jodi — August 12, 2012 @ 5:30 PM
Apparently some adults also. But it’s uncommon.
http://www.ehealthme.com/ds/keppra/incontinence
Comment by Phylis Feiner Johnson — August 12, 2012 @ 5:43 PM
I can relate well to anyone who has had bad side effects with Keppra. I was placed on it 18months ago while I was waiting for major brain surgery. I was also taking 1000mg Tegretol. My seizures were occuring about 10 times a month – complex partial seizures – and the keppra didn’t make any difference to that side of things. BUT my personality was completely altered to the point where my 4 children were scared of me because of my mood swings. I also knew what I was doing when I was angry but there was nothing I could do to change the way I felt. When I told this to my neurologist he changed my medication to lamictal and I felt an immediate change in how I felt. I was one of the fortunate people who had evidence of a scar in a part of my brain that could be operated on. I had the surgery last October 2011. Now I am only taking 50mg of tegretol and I have not had a seizure for 11 months.
Comment by Ruth — September 5, 2012 @ 4:04 AM
Hurray for you…and your recovery! I’ve never been on Keppra, but I AM on Lamictal and for me, it’s been a life saver.
Luckily, no side-effects, just good results.
Did you know that Lamictal acts as an anti anxiety med as well as an AED? That’s one of the beauties of it.
Here’s to a seizure free life! I wish the best for you…
Comment by Phylis Feiner Johnson — September 5, 2012 @ 10:43 AM
Abby, have you told your doctor this? If not, I would suggest you keep a daily seizure diary, noting when you take the Keppra, the timing of your seizures, their duration, plus an exact description of what your reactions to the Keppra are and how long they last (if not always).
I think if you can document your reactions, your doc may get a better idea of what other med(s) might be more appropriate.
AEDs are really a crap shoot. Sometimes, it takes a while to find what’s right for you.
I know that I kissed many frogs, before I found my “magical med mix”. (Lamictal and Klonopin, and now I’m a happy camper, with NO side-effects.)
Comment by Phylis Feiner Johnson — September 30, 2012 @ 6:14 PM
I have, my doctor doesn’t want to switch my medication. I’ve been keeping a seizure diary all summer. It was a waste of my time.
Comment by Abby — October 7, 2012 @ 11:28 PM
Have you asked him the reason why? Or is it just because HE thinks it works?
Abby, may I be so bold as to suggest a second opinion? (Bring your records.)
And remember, there’s no reason for you to suffer. YOU are the patient!
Comment by Phylis Feiner Johnson — October 8, 2012 @ 10:31 AM
For Abby,
2012 List of GOOD Neurologists…Epileptologists…Neurosurgeons…and Pediatric Doctors
http://epilepsytalk.com/2011/05/03/newly-updated-comprehensive-list-of-good-neurologistsepileptologistsneurosurgeonsand-pediatric-doctors-2/
Comment by Phylis Feiner Johnson — October 8, 2012 @ 10:40 AM
I have been on Keppra for over 2 years and all this time I have never had any problems with it . I have never been on the generic brand ever. In past years I have had problems with other generic brand drugs that I had been on for siezures like Tegretol, Depakote. While being on Keppra I have had a siezure once in awhile but not to often. I’m also on another med beside this and it is called Banzel. I have noticed a few problems with this one at times. Its a name brand that I take,I don’t think they have come out with one yet for this kind yet. I do let my doctor know when I do have problems with it.
Comment by Corina — October 2, 2012 @ 5:01 PM
Corina, you might be interested in this article:
GENERICS: IMPORTANT NEWS FROM THE AMERICAN ACADEMY OF NEUROLOGY
http://epilepsytalk.com/2009/12/22/important-news-from-the-american-academy-of-neurology-of-neurology/
Comment by Phylis Feiner Johnson — October 2, 2012 @ 6:26 PM
To be honest, i take Keppra for my epilepsy and ive been taking it for nearly a year and no it hasnt stopped my fits but none of the other treatments are working either but Keppra is working a hell of a lot better than the original tablets. Even though my tablets have not stopped my seizures they have decreased, they have also stopped happening in the day time, inwhich i found embarrassing being only 16, they happen in the night time. My mum thinks my seizures occure because of my period and i agree with her, my dad thinks they occure because of stress i also agree with him!! I feel sorry for anyone with epilepsy and i wish them the best, because i know what it is like to be epileptic and not being able to fix it, but Keppra effects people differently so never give up and try different medication as long as it is doctor prescribed because one day it could work! x
Comment by Elly — November 8, 2012 @ 7:13 AM
Sounds to me like you could have “Catamenial Epilepsy.”
Catamenial epilepsy happens when your seizures worsen just before your period…or during the first few days…or at mid-cycle.
It’s basically a hormone sensitive seizure — a tendency for increased seizures related to your menstrual cycle.
The causes of catamenial epilepsy are not totally understood. It could be an imbalance between your two female sex hormones, estrogen and progesterone, or you may not be producing enough progesterone during the second half of your menstrual cycle.
It is also possible that the amount of antiepileptic drug (AED) circulating in your bloodstream may decrease before menstruation.
You can read more about it at:
Catamenial Epilepsy – Do You Have It?
http://epilepsytalk.com/2011/08/07/catamenial-epilepsy-%E2%80%93-do-you-have-it/
Comment by Phylis Feiner Johnson — November 8, 2012 @ 10:07 AM
Also Elly, if Keppra isn’t entirely working for you, perhaps you should try a med or a combination of two different meds.
This is anecdotal, but I spoke to someone yesrterday who was very disappointed in Keppra.
She ended up changing to Lamictal and Vimpat and, so far, so good.
And please DO consider keeping a daily seizure diary, noting your sleeping patterns, what you eat and when, every day events (including emotional upsets), the onset of your period, occurance of seizures, how you feel afterwards and, if you can, the duration.
This will be helpful in both diagnosing catamenial epilepsy and the effeciveness of the Kepra you are taking.
Comment by Phylis Feiner Johnson — November 8, 2012 @ 10:16 AM
I was on a perfect combination of keppra XR & Lamictal XR. I was able to miss a few doses & not have any seizures.. It worked great together because I have Generalized tonic-clonic (grand mals), absence, myoclonic & Atonic seizures. Then they changed my keppra for the generic ‘levetirecetam.’ If i miss a single dose of it, I’ll have myoclonic & absence seizures for the entire next day. I notice a huge difference.
Comment by Jennifer — January 24, 2013 @ 3:14 PM
I think it’s really important to be consistent with what you take.
Which isn’t as easy as it seems in the world of generics. Because pharmaceutical companies don’t all have the same formularies or they change.
Plus, if I didn’t say it above, generics only have 20% of the prescribed drug in them. The rest can be “filler” of any kind.
The American Academy of Neurology reports: “The AAN opposes generic substitution of anticonvulsant drugs for the treatment of epilepsy without the attending physician’s approval.
The FDA has allowed for significant differences between name-brand and generic drugs. This variation can be highly problematic for patients with epilepsy.
Even minor differences in the composition of generic and name-brand anticonvulsant drugs for the treatment of epilepsy can result in breakthrough seizures.”
http://www.nytimes.com/2009/12/19/health/19patient.html?emc=eta1&_r=0
Comment by Phylis Feiner Johnson — January 24, 2013 @ 4:00 PM
Thanks for sharing. My thought is…who changed your prescription to a generic? My insurance company has tried and my pharmacy has as well. In both cases I had to make it clear that changing my Rx (either from a brand name to a generic, or from a generic to a brand name) could result in a break through seizure.
Comment by Tom — January 24, 2013 @ 8:37 PM
Prevent Medication Changes…
http://epilepsytalk.com/2011/09/14/prevent-medication-changes/
This letter has been created by the Epilepsy Foundation to make explicitly sure that no substitutions are made to your prescription without full consent by you and your doctor. You might want to make a copy of it for your files…
Comment by Phylis Feiner Johnson — January 25, 2013 @ 8:47 AM
My daughter just recently been prescribed keppra. She is 21 months old. NOT EVEN TWO YEARS OLD YET. i feel very strongly about medication as a whole, even more so when our comes to my baby daughter. I wanted other opinions from parents who had top deal with similar situations. I’m taking this very hard. But I’m planning on starting hee on it within the next few days. Please help me with youre opinions.
It’d be greatly appreciated.
Comment by Tamara — January 25, 2013 @ 9:15 PM
I think you need to talk to your neuro about possible alternatives.
There are so many meds and add-on meds out there that it really is a crap shoot.
I spoke to the guru of Neurology, Orrin Devinsky, and asked why so many people are prescribed Keepra.
He simply said: “Because it works.”
These days, it seems to be at the forefront of anti-epilepsy drug treatment.
But that doesn’t mean it’s right for your little girl.
You might want to go to the parent’s forum at epilepsy.com where a lot of concerned parents are discussing similar issues. It’s an excellent, reliable resource.
Topic: Living With Epilepsy – Youth
http://my.epilepsy.com/forum/118
I hope this helps…
Comment by Phylis Feiner Johnson — January 26, 2013 @ 11:24 AM
[...] to try and figure out when keppra (my seizure medicine) originally came out, and i stumbled across this interesting little bit from a couple of years ago. there was nothing necessarily revelatory about it– i knew that [...]
Pingback by … so you found a girl who thinks really deep thoughts what’s so amazing about really deep thoughts… « kvetchnik — February 1, 2013 @ 11:57 PM
By the way, I saw this article that says Keppra is no more effective than the older AEDs at preventing bone loss. I mention it, simply because that is the rationale given for moving people off of the older AEDs and over to Keppra in the first place.
http://www.internalmedicinenews.com/specialty-focus/neurology/single-article-page/levetiracetam-matches-older-antiepileptics-for-bone-protection.html
Comment by Doug — February 5, 2013 @ 6:03 PM
BRILLIANT! Although I did have a little difficulty “joining” the website. But some people say that about us.
How did you find it? What a terrific resource.
I appoint you KING FOR THE DAY. (Or week!)
Comment by Phylis Feiner Johnson — February 5, 2013 @ 7:49 PM
Strange…. it used to allow you to view the article without joining.. and now you can’t//
Comment by Doug — February 5, 2013 @ 11:46 PM
i have benign essential tremour followed up with myoclonic jerk,when medications that family dr. prescribed no longer was effective was referred to a neurologist, am now taking prophanalol with levetiracetam which stopped the tremours that had somewhat come back,then after a couple of years jerking came back mostly in the evening when trying to relaxe,i stew abt things constanly,dr. increased the levetiracetam to 1 in morning and 2 at night helped somewhat but still had jerks in evening,have been going thru biofeedback for allergies since the week crude oil came upon and they balanced that out jerking has stopped excerpt for a mild occurance once in awhile i have always been a stewer but when i t hink back it has been worse ,am wondering if levetiracetam could be involved with this or what
Comment by Beverly — February 14, 2013 @ 10:23 AM
According to the Epilepsy Center at NYU, anxiety
nervousness, and decreased ability to cope with daily life events are side-effects of Keppra. So, it could very well be the culprit.
http://epilepsy.med.nyu.edu/treatment/medications/levetiracetam
Another resource says: “Keppra (levetiracetam) is a medication used to treat epilepsy and does list anxiety and nervousness as possible side effects.”
http://www.everydayhealth.com/health-questions/keppra/can-keppra-cause-anxiety-or-jittery-feelings
And yet another resource said: “According to Drugs.com, Keppra can cause serious changes in your personality. You may become anxious, agitated, hostile, restless or hyperactive.”
http://www.livestrong.com/article/50680-side-effects-keppra/
Comment by Phylis Feiner Johnson — February 14, 2013 @ 10:52 AM
Anyone ever heard of a periodic “spaciness or light dizziness” from Keppra? I know dizziness is listed as a side effect, but what I’m talking about seems more transient.
I’ll be home and seem fine, and then I get out and among others and realized that I feel a little “out of it.” Sometimes if there is alot of busy action around (like with my sisters 3 boys running around) it almost feels like things are happening too fast for me to handle.
Nothing comes of it, and it usually goes away, and I don’t think its an aura or anything (at least not like I’ve had before), but it got me wondering if it were the keppra, would the feeling be all the time or could it come and go?
Sometimes, if I drink a caffeinated beverage it seems to help, but that may just be in my own mind..
Comment by Doug — February 17, 2013 @ 4:01 PM
Doug, there’s this fabulous page that I found where people are talking about their experiences with Keppra on all sorts of levels: doses, effectiveness, comparision to other meds, side effects.
http://www.askapatient.com/viewrating.asp?drug=21035&name=KEPPRA&sort=timelength&order=1
They speak of fatigue and confusion but not directly about any spaciness or time distortion.
Could something else be contributing to that feeling? Or are you on mono therapy?
Comment by Phylis Feiner Johnson — February 17, 2013 @ 7:41 PM
I’m on Keppra monotherapy. My aura is an extreme lightheadedness where I can’t comprehend when people are talking to me. I just stare at them and then realize 10 secs after they say something that they are talking to me, so its a very specific feeling.
Of course anytime I feel spacey for any reason, I always double check myself to make sure its not aura-like, but I don’t think this is an aura. Also, like I said, previously, this feeling comes and goes, and I never get to the point where I’m totally out of it, as when an aura is occuring.
Comment by Doug — February 17, 2013 @ 11:50 PM
I thought that Keppra was OK until my neurologist increased the dose 2 weeks ago! It has been a nightmare with sudden bursts of rage, poor balance, exhaustion and just general vacant feeling? I have now reduced again to see if things improve, I would rather just change meds.
Comment by mickcgorman — March 3, 2013 @ 1:54 PM
Perhaps you should talk to your doc before you reduce it. Was there some reason he increased your dose? Or was he just titrating you up?
Also, it might be helpful to keep a diary, noting times of dose, your behavior, reactions, emotions, etc. throughout the day.
Perhaps then he/she can get a better idea of what you’re going through.
Comment by Phylis Feiner Johnson — March 3, 2013 @ 2:56 PM
I did call the doctor, it was her idea to reduce slightly, I was still being titrated up.
Comment by mickcgorman — March 3, 2013 @ 3:41 PM
I’m confused. Are you now in the process of LOWERING your dose?
If so, what effect has it had on you?
Positive or negative in terms of seizures vs. emotions and behavior?
Comment by Phylis Feiner Johnson — March 3, 2013 @ 5:20 PM
I had just increased and then I had a few episodes of unexplained rage which worried me, I called the doctor who said to cut back a little and call again after 2 weeks to see if things improve. I must confess that things don’t feel normal yet, a little edgy and odd but I only reduced again 5 days ago. I did have a seizure on the day of the first rage episode? this is all new to me so may be more scary than it needs to be?
Comment by mickcgorman — March 3, 2013 @ 6:41 PM
I think you were very pro-active in calling the doc immediately and not being a victim and thinking “Oh well, I guess this just comes with the territory.”
Yes, it could be scary, but if you feel you have things in control — both with your seizures and your emotions — give the reduced dose some more time and see how you feel. Unless it becomes unbearable, again. (Still?)
Then, do what you did before. Be pro-active and call the doc.
Hats off to you for taking control of what could have been a very nasty situation.
Comment by Phylis Feiner Johnson — March 4, 2013 @ 10:27 AM
Hi, my daughter who is 14 years old is in the process of changing her current meds which were epilim and frisium to Keppra. She is still on her full dose of Epilim and a half dose of Keppra. Since starting the Keppra her behaviour has been totally off the wall and she just can not be reasoned with. She is also in Concerta as she has ADHA. She has only been on Keppra for a two weeks but her dose is about to double. Is it possible that this is a side effect of the Keppra (reading the bloggs made me start to wonder) and is it possible this might settle down once she has been on it for a bit longer?
Comment by Nicky — March 17, 2013 @ 8:51 PM
MY ADVIECE IS TO MAKE HER STOP TAKEING KEPPRA! it will do her no good.
Comment by anonimuss — May 6, 2013 @ 5:58 AM
Well, time will tell, although I’m not very optimistic.
Here’s what other people have said:
February 11, 2011 by Brenda H
I have not heard of using Keppra for ADHD. It is supposed to be very effective for mania, although some patients who take it will develop psychotic sx. My ds 16 took it a few years ago and we did not have good results.
February 11, 2011 by jaime
My dd has been taking Keppra for a few months. Hasn’t helped ADHD symptoms at all. It seems to be helping keep her moods stable. She is very, very sensitive to the sedation SE, which makes her extremely irritable. We were able to cut her Keppra to 500mg. In the past she usually needed fairly high doses to keep manic symptoms at bay. I am not sure how much is the Lithium, the Seroquel, or the Keppra. She is actually only taking 150 of Lithium. Her blood level is low, only 0.2, but we were using it to boost her other meds.
She is unable to tolerate stims and is taking the Amantadine for her ADHD. It is actually an anti-viral but seems to be helping fairly well. Her teacher can tell if she misses it and when we were doing it at night for a while her grades dropped signifcantly. It helps with both the hyperactive and fidgity part and the inattention/lack of focus half.
And, here’s an interesting real world study of ADHD among people who take Keppra. It is created by eHealthMe based on 8 reports from the FDA. In total 17,926 Keppra users are studied.
http://www.ehealthme.com/ds/keppra/adhd
I hope this helps…
Comment by Phylis Feiner Johnson — March 17, 2013 @ 10:30 PM
Generic keppra has different inactive agredients, i.e. aspartic acid (aspertame). TEVA pharmaceuticals did not. I purchase my husband’s generic keppra from there. It works for him, Mylan and others do not. Have to search pharmacies to find which ones can purchase from TEVA Lab. Aspertame and caffeine sets off his epileptic seizures within minutes of consumption.
Comment by Terry Garlitz — March 28, 2013 @ 1:20 PM
That’s fabulous and very useful information Terry!
THANK YOU for sharing this treasure.
For those who want to know more about TEVA Pharmaceuticals, here’s what they have to say — “Your smart resource for information about generic drugs!
Learn more about generics, find alternatives to your current medications, and receive alerts on new Teva generics and tips for safeguarding your family’s health.”
http://www.tevagenerics.com/
Comment by Phylis Feiner Johnson — March 28, 2013 @ 3:21 PM
I have been taking Keppra for 43 years & it never effected me like discribed. All drugs have side effects. Different people are effected in different ways by different drugs.
Comment by Lorraine Konesni — March 28, 2013 @ 2:05 PM
You sure are right, Lorraine!
Different bodies, different chemistries, and different reactions.
Sometimes we lose sight of that…
Comment by Phylis Feiner Johnson — March 28, 2013 @ 3:25 PM
Terry,
Here’s an article you might find interesting:
The Scandal of Aspartame
http://epilepsytalk.com/2009/11/26/the-scandal-of-aspartame/
Comment by Phylis Feiner Johnson — March 28, 2013 @ 3:28 PM
Well Tom, good question!
I spent an hour rooting around and I could not find any evidence of generic Keppra containing aspartame.
Plenty of complaints about Keppra, the same for aspartame, but it doesn’t seem that aspartame is a component of generic or brand-name Keppra.
But Terry had some brilliant information. (See #8 above.)
Terry: “Generic Keppra has different inactive ingredients, i.e. Aspartic Acid (Aspartame).
TEVA pharmaceuticals did not.
I purchase my husband’s generic Keppra from there. It works for him, Mylan and others do not.
Have to search pharmacies to find which ones can purchase from TEVA Lab. Aspartame and caffeine sets off his epileptic seizures within minutes of consumption.”
PFJ: For those who want to know more about TEVA Pharmaceuticals, here’s what they have to say — “Learn more about generics, find alternatives to your current medications, and receive alerts on new Teva generics and tips for safeguarding your family’s health.”
http://www.tevagenerics.com/
So, I would suggest you email them (with your zip code included) and ask where you can find their brand of generic Keppra, or if you can just purchase it directly from them.
Good luck!
Comment by Phylis Feiner Johnson — March 29, 2013 @ 5:43 PM
I’m new to all of this and still trying to figure stuff out. I’ve had auras since I was 16 when I started birth control. I would get a feeling of deja vu and it would follow with a few minutes of confusion. It was weird, but at that time I just thought I was teenager with lots of changes going on and thought this would eventually go away. Well it didn’t. December before last I was home alone and the last thing I remember doing was cooking dinner when I woke up and found myself in the bathroom floor and had no idea what happened. I told my mom and we went to our family doctor who sent me to a neurologist. I had CT scans, MRI scans, and a 3 day EEG that gave me zero answers. Then last July I had two seizures two weeks apart while at work and was sent to the ER. I was then sent to another neurologist who prescribed me to Keppra. I have NO IDEA what is causing this. My doctor refuses to believe it has anything to do with birth control; although, I’ve read estrogen can provoke seizures. Keppra has made the frequent auras dissipate, but I still get them every now and then. I just had that feeling a few minutes ago, and I still feel very anxious. I’m now 21 and really want to figure what is causing this. I hate not knowing if it’s going to happen again and where I’ll be if it does happen. I wish this would just go away I know live every day not knowing if it will happen while I’m driving to work and am very worried. Keppra has made me very fatigued and have a bad memory. I’ve also gained about 15 pounds. Ughhh
Comment by Ashley Wickware — April 3, 2013 @ 11:11 AM
Ashley, what I think you’re describing is Catamenial Epilepsy.
Catamenial Epilepsy – Do You Have It?
http://epilepsytalk.com/?s=catamenial+epilepsy
One of the main theories is that seizures around periods may be due to fluctuations in the two major reproductive hormones, estrogen and progesterone, which rise and fall in the menstrual cycle.
(Love those hormones!)
The effects of those hormones on brain excitability are at the root of this theory.
Estrogen seems to be the “bad guy,” lowering seizure threshold, while progesterone is the “good guy,” offering more protection against seizures and increasing seizure threshold.
Unfortunately, most male neurologists are kind of dense about Catamenial Epilepsy and some don’t even believe it exists.
(Not to be sexist, but a lot of women prefer either having a female neurologist or at least a woman GYN to be more alert to the possibilities.)
Another question. What kind of birth control are you are on?
Many women prefer Depo-Provera.
“An advantage of taking Depo-Provera is decreased incidence of seizures in women with epilepsy.
And also, unlike most other hormonal contraceptives, Depo-Provera’s contraceptive effectiveness is not affected by enzyme-inducing antiepileptic drugs.”
http://www.drugs.com/answers/epilepsy-is-any-one-taking-depo-provera-419427.html
Also noted in:
http://www.medic8.com/healthguide/articles/depoprovera.html
Then, on the on the other side of the coin, here’s a thread from women who had INCREASED seizures with Depo-Provera…
http://my.epilepsy.com/node/983025
I also found:
“The NIH states that while uncommon, some users of Depo-Provera start having seizures.”
http://www.livestrong.com/article/111266-dangers-depoprovera/
If I were you (which I’m not), I would keep a menstrual/seizure diary and take it both to your GYN and neuro.
Find out if there IS a connection between your periods and your seizures and proceed from there.
(In other words, I don’t think Keppra is the culprit.)
Also, keep in mind that stress is number #1 on the seizure trigger parade.
I hope this helps…
Comment by Phylis Feiner Johnson — April 3, 2013 @ 11:44 AM
Thank you for replying so fast! I have since switched birth control to nexaplanon (sp?) which is progesterone. I was hoping that would fix everything, but I’ve had a couple mild episodes of those strange feelings I get. I’m not sure if it will take awhile to get rid of 5 years of my estrogen birth control. I switched in December and at the time can’t track my cycle, as I’ve been continually going for 4 months. But I am pretty convinced birth control has played a role, since the first time I remember having these feelings was after I started birth control.
On the stress topic, I’m sure this plays a huge part in my problems. I’ve never dealt with stress well and can feel it inside when it’s building up. Sometimes I feel like I’m going to explode and don’t know how to release that anxious feeling.
I’ve got a lot of factors that could play into this, so hopefully I can get everything sorted out soon.
Comment by Ashley Wickware — April 3, 2013 @ 11:54 AM
Hi Ashley, I can’t make the stress go away (I wish I could), but these may be of interest to you:
10 Ways to Cope with Your Fear and Anxiety
http://epilepsytalk.com/2012/05/18/10-ways-to-cope-with-your-fear-and-anxiety/
Breathing Your Stress Away…
http://epilepsytalk.com/2009/11/18/breathing-your-stress-away/
Super Seizure De-Stressor
http://epilepsytalk.com/2009/12/05/super-seizure-de-stressor/
Foods That Fight Stress…
http://epilepsytalk.com/?s=stress
I hope this helps…
Comment by Phylis Feiner Johnson — April 4, 2013 @ 9:50 AM
Do you have any recommendations for a good female neurologist in the Dallas, Tx area?
Comment by Ashley Wickware — April 3, 2013 @ 3:43 PM
These docs were all recommended based on eforum members’ positive personal experiences. Sorry there are no women on the list.
TEXAS
Dr. Mark Agostini, University of Texas Southwestern Medical Center, Dallas, TX
Dr. Jose Cavazos, University of Texas Health Science Center, San Antonio, TX
Dr. Peyton Delaney, San Antonio, TX
Dr. Stasha Gominak, Tyler, TX
Dr. Robert Leroy, Medical City, Dallas, TX
Dr. Michael Newmark, Houston, TX
Dr. Padraig O’Suilleabhain, University of Texas Southwestern Medical Center, Dallas, TX
Dr. Jeremy Slater, Texas Comprehensive Epilepsy Program at University of Texas, TX
Dr. Charles A. Szabo, University of Texas Health Science Center, San Antonio, TX — Epileptologist
Dr. Richard Ulrich, Tyler, TX
Dr. Paul Van Ness, University of Texas Southwestern Medical Center, Dallas, TX
NOTE: Dr. Charles Szabo has been highly recommended by both women and men.
Comment by Phylis Feiner Johnson — April 4, 2013 @ 10:00 AM
I have been taking generic Keppra 3000mg daily,Vimpat 400mg daily& clonazepam 1mg daily, I do still have seziures had one last night G-mal although they seem less dramatic for lack of better word! Oh I have been on meds for 2 1/2 yrs, I have petite mal seziures as well I would say 70percent of the time, I’m unable to speak a lot,memory loss, coordination problems bout overall I do feel better most of the time, my only complaint is I get sleepy most days around 1 and must sleep. What can I do to have more energy? And should I be taking something like a vitamins for long term problems I’m a 36 yr old woman
Comment by Jaime Balbas — April 3, 2013 @ 9:51 PM
YES!!!
These articles may help:
Foods That Fight Stress…
http://epilepsytalk.com/2010/06/20/foods-that-fight-stress%e2%80%a6/
Fighting Seizures Nutritionally
http://epilepsytalk.com/2009/11/26/fighting-seizures-nutritionally/
Zinc Can Help You Think!
http://epilepsytalk.com/2012/06/19/zinc-can-help-you-think/
P.S. I’m about to turn 60, so don’t despair!
Comment by Phylis Feiner Johnson — April 4, 2013 @ 10:06 AM
I’m being treated for migraines and generalized bilateral epilepsy, or that’s what my neurologist THINKS it is. I’ve been taking it since January of 2011 and I used to be a little unstable with my emotions. For the past two years, I’ve been completely drained with depression, anxiety, angst, hate, anger, and just about everything. I feel like most of my high school career was ruined from this drug as I took one in the morning and two at night 500mg each as a total of 1500mg a day. I’m seeing a new neurologist to get a reevaluation of my epilepsy and now slowly stopping my pills. I believe I was treated with the wrong medication and I already feel somewhat better after only four days of taking two pills a day. There were no happy thoughts in my head anymore, only suicidal thoughts, pessimism, and hate. I’m glad to finally find out why I’ve had such major depression from nowhere that couldn’t be effectively treated.
Comment by Andrea — April 7, 2013 @ 11:00 AM
Well Andrea, it’s good that you’re going to a new neuro and most likely will get off Keppra.
TAKE YOUR RECORDS WITH YOU.
That way, your new doc will get an idea of what you’ve been going through.
He’ll probably want to do some testing to establish your current condition.
So, here’s a little primer on seizure testing…
Beyond EEGs…Diagnostic Tools for Epilepsy
http://epilepsytalk.com/2010/09/13/beyond-eegs%e2%80%a6diagnostic-tools-for-epilepsy-2/
And some tips on how to get the most from your doctors’ visit:
Secrets to Better Care from Your Doctor
http://epilepsytalk.com/2010/06/13/secrets-to-better-care-from-your-doctor/
Don’t be disappointed if the first med doesn’t “work”.
These days, with the zillions of anti-epilepsy drugs available, often finding the right one (or the right combination) can be a crap shoot.
Hang in there. You’ve already taken the important first step!
Comment by Phylis Feiner Johnson — April 7, 2013 @ 2:39 PM
P.S. Andrea, about migraines, you might find this article interesting:
Epilepsy & Migraines — Kissing Cousins
http://epilepsytalk.com/2010/09/12/epilepsy-migraines-kissing-cousins/
Comment by Phylis Feiner Johnson — April 7, 2013 @ 2:42 PM
This article was very helpful in learning more about the new medication my foster son has been prescribed. Even though I am new to dealing with an epileptic, I have made it a point to learn about each of the meds he is on, and be totally aware of their side effects.
James has been on Keppra for one week, and so far the only seizure he has had was my own fault because I missed a dose of meds and he was 4 hours late. On that side of things, I am fortunate that we have found a pill that is working to stop seizures.
Unfortunately, it has been an interesting week in terms of dealing with his changes in mood and spells of aggression, as I have outlined here: http://mrscotto.wordpress.com/2013/04/09/keppra-the-follow-up/
I have been monitoring the side effects closely. Today was a good day with no outbursts, but we will be taking this one day at a time.
Comment by Scott Oosterom — April 10, 2013 @ 12:41 AM
I read your post, and unfortunately aggressive and abusive behavior can be one of the “side-effects” of Keppra. (As you’ve learned yourself.)
And it could get worse as he titrates up to a stronger dose.
Scott, I think you’re doing the right thing.
Now, try to document his outbursts (and any causes you can figure out — other than the Keppra) so you have something to show the doc and hopefully, he/she can get a better idea of what’s going on.
He may need a second med to offset the Keppra aggression or as you said, Keppra may not be for him.
Comment by Phylis Feiner Johnson — April 10, 2013 @ 9:19 AM
Hi, I have just started keppra as an addition to my epilem medication as the epilem wasn’t controlling my seizures anymore.
I was just wondering at what dosage and how soon after people had started taking this medication did they begin to see the any side effects.
Thanks for your help
Comment by Mel — May 5, 2013 @ 10:25 PM
hi world,
Im on keppra for a year or so.
before takeing it I use to get GS once in two years. now that has been changed to 8 or more times in only one year. for the time Im takeing this “thing” (keppra)it doest end just with that. Side effects are more fun. Its feels like nothing have sence any more in my life. Im trying to hide that from others (home,work,friends ect.). Most times, while doing so, it ends as if Im histericly happy. Keppra is not helping me in any way exept for neverending hiper inteligent toughts that comes to my mind, from time to time. Im finishing my master at university with ease. After I do that I will stop takeing keppra , no more fun I guess
Comment by anonimuss — May 6, 2013 @ 5:47 AM
Why not stop taking it now?
Comment by Phylis Feiner Johnson — May 6, 2013 @ 6:33 PM
I am so glad I found this site, I know now that its not just me but the Keppra I started just one week ago that has made me go into a deep depression and hostile personality. Last night I was very suicidal and cried all day today. I will call my doctor tomorrow and get my medicine switched before it cost me my life. I literally feel like I am going crazy!
Comment by tlanclos — May 8, 2013 @ 3:12 AM
Oh I feel so awful for you and what you must be going through.
But the good news is that you recognized the symptoms early and are being proactive about it.
And I’m grateful that the article was of help to you.
That makes MY day.
Comment by Phylis Feiner Johnson — May 8, 2013 @ 10:29 AM
I have been on Keppra for 2 months, and I am always tired, and the world seems like a haze. My coordination is no longer there, and I can’t think straight. I had 1 seizure in my life and I want to tell the doctors to shove all these drugs! I can’t walk through life like this. I am 45 years old, never had issues until my seizure a few months ago. I truly can not take this lifestyle change.
Comment by RK — May 12, 2013 @ 8:30 PM
Either dump the doc or dump the Keppra. Either way, call him/her immediately.
There’s absolutely no reason why you should suffer these side-effects.
If you decide to seek another opinion, or another doctor, this link may be helpful…
2013 Comprehensive List of GOOD Neurologists…Epileptologists…Neurosurgeons…and Pediatric Doctors
http://epilepsytalk.com/2013/01/02/2013-comprehensive-list-of-good-neurologistsepileptologistsneurosurgeonsand-pediatric-doctors/
I’m sorry you’re going through this, but you DON’T have to.
Comment by Phylis Feiner Johnson — May 13, 2013 @ 7:16 AM
Obviously Keppra is known for causing some people to experience physical fatigue and “run down” feelings. However, has anyone seen this effects get worse over time? I feel like I’ve always had fatigue from Keppra, but I’ve forced myself to exercise and get out anyway. Lately (the last few months), it has been worse, and MUCH harder to have any stamina. Also, my sleeping has been worse (although never good on Keppra, it has also gotten worse).
When I asked my neuro about this, he said that he didn’t think it was Keppra, as the fatigue would be pretty constant from the beginning and would not have gotten worse. Same for the sleep issues. Of course I heard this before with regard to delayed onset rashes from tegretol (told that couldnt happen either) and that turned out not to be true. So, I just wondered if anyone has experienced worsening fatigue and sleep issues after having taken Keppra for a long time?
Comment by Doug — May 14, 2013 @ 7:08 PM
I take Keppra and it works like a charm and I don’t have seizures
Comment by razzle51 — May 19, 2013 @ 9:27 AM
That’s wonderful news and YES, Keppra does work for some people. It’s all a matter of body chemistry.
I’m glad to hear you’re one of them for whom it works!
Comment by Phylis Feiner Johnson — May 19, 2013 @ 9:41 AM