Epilepsy Drug Suicide Warnings Added by FDA
Published: December 17th, 2008 • Comments: 29
The FDA is requiring the manufacturers of 11 different epilepsy drugs, such as Lamictal, Lyrica, Topamax and Depakote, to warn about potential side effects that may increase the risk of suicide and suicidal thoughts.
About 2.7 million Americans have epilepsy, and the anti-seizure drugs generate sales of over $10 billion a year, making them the fifth best-selling class of medications in the United States.
FDA officials originally indicated earlier this year that the medications should carry a “black box” warning about the suicide side effects of the epilepsy drugs, which would be the strongest warning that can be placed on a prescription medication.
However, a panel of independent advisors to the FDA met in July 2008, and concluded that that a “black box” suicide warning was not appropriate.
In a statement released December 16, 2008, the FDA indicates that they have completed their analysis of data involving suicides and suicidal thoughts with the drugs used to treat epilepsy, psychiatric disorders and other conditions.
Based on their review, the FDA is requiring all manufacturers to add information about the risk of suicidal thoughts an actions to the Warning section of their labeling and to develop a Medication Guide which will be provided to patients receiving the drugs.
The 11 epilepsy drugs which will carry the new suicide warnings include: Carbamazepine (marketed as Carbatrol, Equetro, Tegretol, Tegretol XR); Felbamate (marketed as Felbatol); Gabapentin (marketed as Neurontin); Lamotrigine (marketed as Lamictal); Levetiracetam (marketed as Keppra); Oxcarbazepine (marketed as Trileptal); Pregabalin (marketed as Lyrica); Tiagabine (marketed as Gabitril); Topiramate (marketed as Topamax); Valproate (marketed as Depakote, Depakote ER, Depakene, Depacon); and Zonisamide (marketed as Zonegran).
The FDA indicates that they have reviewed data from nearly 200 clinical trials, which indicate that those taking one of the epilepsy drugs are nearly twice as likely to experience suicidal behavior or thoughts when compared to those taking a placebo.
For every 500 patients treated with an antiepileptic drug, the FDA suggests that one additional suicide could be caused.
Healthcare providers have been asked to notify patients, their families and caregivers about the potential epilepsy drug suicide side effects, so that they can watch for unusual behavior or suicidal thoughts.
Comment by Rebecca on 16 February 2009:
I have been taking Trileptal constantly (450 mg a day) to treat Bipolar I since 2003. It worked very well for the first four years or so, but around January of 2007 I started having uncontrollable panic attacks and anxiety. This worsened over time, and although I lowered my dosage to 300 mg a day, now I have suicidal thoughts all the time. I have been very depressed, and although normally I am a social creature I do not leave my house. When I eat, I become very ill most of the time. Every time I inquire about ceasing the Trileptal usage my psychiatrists tell me this is just a “natural” desire for Bipolars to think they no longer need medicine and talk me out of stopping the drugs. I stay with my parents sometimes because I’m scared of what I am like sometimes.
Comment by Kris on 18 February 2009:
My brother-in-law committed suicide in mid January of 2009 by ingesting a fatal amount of Lyrica, which he’d been prescribed for neuropathy.
I’m extremely concerned about the safety of this medication and am worried that it caused his death.
Comment by Kris on 27 February 2009:
Rebecca,
PLEASE talk to your doctor about your suicidal thoughts. My brother-in-law didn’t speak to anyone, and now he is gone.
If your doctor won’t listen to you, then find a better doctor. Please. Do it for the people who love you.
Comment by bemcmillen on 10 June 2009:
My husband committed suicide after being on depakote for 2 weeks.
Comment by Holly on 19 June 2009:
My 20 year old son hanged himself a few months ago after having been prescribed Dilantin. I am an RN and pleaded with the ER doc NOT to prescribe it to him because he was depressed. No one gives a shit that paramedics took 40 minutes to arrive-from 2.1 miles away, then refused to do anything based on the ASSUMPTION that his neck was broken. It wasn’t, according to the medical examiner……….so they just let him die, in my home…….because they “ASSUMED”. Then, if that weren’t enough, the paramedics “log” of events showed timely arrival and 44 minutes of care, including defibrillation. I was there, along with 2 neighbors…..they are flat out lying. And, whats worse…I cut him down, he had a pulse. I could’ve saved him had I lot been freaking out.
Comment by Kathleen on 8 July 2009:
Someone very dear to me committed suicide last year. He had been taking 1600 mg of Topamax/day as a mood stabilizer for being bipolar. There are two others I know who were also taking this dose for the same condition. A few months ago, both people had a strong intuition to no longer take Topamax, though they didn’t discuss it with one another. One went for a second opinion — the specialist was horrified at the dose and agreed that another solution should be pursued. Both patients stopped taking Topamax, and eventually all medications, and now feel better than they have in years. The prescribing doctor was allegedly in contact with the manufacturer regarding high dose useage. I wrote to the manufacturer to ask about this, and received no reply. I would like, however, to warn others that this dose should be questioned if prescribed. I am highly suspect of the role Topamax had in the suicide mentioned above, as the person was driven by anxiety, and this drug can increase and/or cause anxiety.
Comment by KA on 18 July 2009:
I too am concerned about some of these drugs. As a consumer, and now as a provider, I think they should be a last resort drug.
I still take topamax 75 mgs a day, but had been on as much as 200 until I could no longer tell what was real from what was not.
I have also coupled my topamax with lamictal until the headaches and other side effects were too severe to bare-
I then coupled gabitril with the topamax and my life further went downhill.
I was completely suicidal for years, it was a driving force… so painful. Akathesia with the gabitril made me feel like I was trying to rip myself apart only to keep running and begged to be held down.
I could not see properly, I became mute outside of the muttering I had to do to channel the voices in my head that would not stop…
Then with the gabitrl came the twitches in my eye, my arms and legs jerking like I had epilepsy. Still I had the fire like headaches, and only wanted to remove my head from my body.
That was it, self-esteem gone- I could no longer see in color and I could not see myself reflected back when I looked in the mirror.
Family ran, nobody to talk me through the agony… Finally I ended the meds cold turkey… all but the 75 mgs of the topamax and a benzo In a last ditch effort to save myself…
Psychosis set in for a few months… but I made it… I took me a year to recover from two years of intense mental illness.
now I take the 75mgs, a tricyclic, and a small amount of a benzo.
I have fears that anything can set me back again, but stay away from large doses or any new sort of designer meds I will.
I work in a field now assisting those in mental health crisis and when I see their long lists of meds I want to pick of the phone and call the AMA or the FDA and say “take a look at this nightmare” the meds are costing people their lives and only making their mental health issues worse… or creating new symptoms.
Comment by Kathleen on 11 August 2009:
Our son was prescribed Depakote about 3-4 weeks ago and just commited suicide last night, with no warning, he was not suicidal or gave no indication he was.
Comment by Dixie on 13 August 2009:
You have my deepest sympathies! Suicide happens when the person is in such a terrible dark depression that s/he isn’t even thinking—it’s like an animal dying of thirst, rushing toward a lake. You just want the pain to end. I have been on Depakote for 15 years. I was suicidal before taking Depakote. I did not get more or less suicidal from Depakote.
I got on Seroquel & the suicidal thoughts stopped after I’d been on it faithfully for 4 weeks.
Everyone is different. But ALL psychotropic meds take AT LEAST 4 weeks to have any real effect on a person. The meds build up in the brain, blood system & fatty tissue & then begin sending out the right chemistry. So NO WAY did Depakote cause anyone to commit suicide. Your son was, sadly, already so down that he was ready for this tragic step.
Comment by samantha on 15 August 2009:
If you were suicidal and they put you on medication that has a side affect known by the fda that causes suicidal thoughts of course you didnt get any better you wanted to die we are talking about people that never felt this way until taking the drug your problem cant be projected onto other, she said” with no warning, he was not suicidal or gave no indication he was.’ meaning he was never that way until he started taking the medication. What about patients that are only having seizures what about them they come in for seizures and leave with suicidal thoughts …explain that
Comment by Melissa on 23 August 2009:
My mother was on Depakote for 5 years and then she went to a new doctor and he changed the Depakote that was working very well I might add to Keppra. She is now in the hospital and because of the suicidal thoughts and deppresion that she has had. They have started her back on Depakote and she if fine.
Comment by melody on 18 September 2009:
I have been on Lyrica for about 8months to a year, just put on topamax and have been taking Neurontin on and off for about a year for extreme pain due to M.V.P accident. I stopped all of them at the same time and am having great withdrawls. I can hardly stand myself. I am so sick feel funny weird hot and cold flu like scarey for me but I don’t want to die and the Meds scare me more. I am now wondering if my Dr. is compitent to treat me or anyone else. I am feeling pissed off that someone could be put on such high doses and they all cause you to feel like death is better then being in pain eveyday. Minnesota I am wondering what I should do about all of this any advice?????
Comment by James on 23 September 2009:
I have had severe mood swings while taking this medication.I was locked up for 3 days under suicide watch.I was originally given Lyrica for neck surgery,then a year later given Lyrica for back surgery.I was told take it when you are hurting I was never told about with drawl upon discontinuing taking.I also have eye problems now I never had before
Comment by Nikki on 6 October 2009:
I have taken Lyrica for almost 3 years as of May I had nerve pain which long story short they treated my back and after 3 years found out it was a tumor growing on my tibial nerve that they removed but continuous suicidal thoughts and attempt to end my life in March,2009 as a result of taking Lyrica the pain specialist had me on lyrica 50 mg 3 a day and lyrica 75 mg 3 a day If it wasn’t for my roommate I would have died. My aunt noticed a commercial here in chicago about lawsuits with Lyrica and after she heard my case has been trying to get the # down to call but no longer see’s the commercial does anyone have a # to an attorney please????
Comment by Donna on 22 October 2009:
Seems like many of these meds exacerbate depression. Please investigate any medications you are taking or that are recommended by your healthcare provider. Ask questions!!! The FDA should be doing more to protect the public, warnings should be more widespread and doctors should not be prescribing off-label for other conditions. People are being hurt by medication side-effects and hurting themselves and are not being given proper information about these meds. How many people must die before something is done? Meanwhile, the drug companies laugh all the way to the bank.
Comment by Margaret on 26 October 2009:
If ANY of you want an attorney PLEASE go to http://www.google.com and search the name of your med(s) and the word lawsuit or/and attorney.
You WILL find a lawyer willing to help.
Meantime PLEASE PLEASE don’t commit suicide, please call a suicide hotline if you find yourself getting close to the edge. My husband was prescribed Depakote after his brain surgery. I researched it and rejected it to his med team quite firmly. He’s doing fine, some depression and some memory loss, totally normal following brain surgery, but not suicidal.
Comment by Laura on 5 November 2009:
My friends husband killed himself recently after being put on Keppra for new onset of seizures. He was only on this drug for a couple of months!
Comment by susan on 17 November 2009:
My doctor put me on lyrica to help with pain after I fell at work.I was never suicidal until I was on this drug.My legs and feet swelled up like fred flinstone,and the pain became intolerable.I was fortunate enough to know that it was this drug because all other pain pills had never caused this problem prior to lyrica.I have stopped this drug for about two years and I still have the swelling in my legs and other bad effects due to this drug.If I was to go before congress or the senate,I would fight to have this drug taken off the market.
Comment by Alex on 19 November 2009:
All of these drugs are horrible. They take what was an untouched innocent mind and distort it, just because there is a ‘problem’ that doesn’t fit the mold of society.
A lot of these comments on here speak of doing research of a drug, reading warnings, making a good decision. That’s all good and fine if you’re picking a medication not related to the brain. Medicating the brain is like playing russian roulette, you never know what you’re going to get, and it just might blow your head off.
I know this from personal experience, been on Depakote, Keppra, Lamictal, and am currently on Zonegran. This is all because of epilepsy that started in 2004, so since then I’ve been able to try a variety of meds, those four just happen to be on this list. I’ve thought about or have came close to killing myself on all four.
I agree, they all made me feel suicidal. Depakote being the worse. Lamictal was the craziest, it made me see people and I could talk to them. Zonegran is just like static in your head all the time. Keppra is horrible, never never never allow someone to take that awful crap.
New meds need to be made, these ones are horrible and do horrible injustices to the people that take them. Isn’t there a drug company that realizes that selling good products increases profits instead of selling products that kill people, ruining their consumer base?
Comment by Page on 9 December 2009:
I take lamictal daily and have noticed a tremendous drop in my ability to function. I have, on many occassions since starting on Lamictial considerer suicide, but will not go through with this thought.
Comment by Izzy on 10 December 2009:
I committed suicide on Sept. 11 of 2007 after taking a regimen of Trileptal for seizures. I was technically dead for a little over a minute. I had been on this medication at 300mg day with good response until my then neurologist insisted on increasing my dosage to TWICE was it was only because he was “following manufacturer’s guidelines.” Mind you, during the year that I was taking the medication this “physician” never once sent me to get a liver enzyme test done, which should be the norm as all of the anti-convulsants do liver damage. Note that Oxcarbazapine’s origin was NOT for seizures, but for bi-polar disorder, until providers of the prescription realized IT WAS MAKING DEPRESSION IN THOSE PATIENTS WORSE. Why then, would the FDA allow this same company to push this “medication” for another, unitended usage? Am now medication free, as the Trileptal increased both the frequency AND intensity of my seizures…and I FIRED my neurologist. We need to keep our physicians aware of the fact that THEY WORK FOR US IN A SERVICE ORIENTED INDUSTRY. Please, do not play with your health. If your physician is not willing to listen FIND ANTOTHER DOCTOR.
Comment by Camelle on 12 December 2009:
my 15 year old daughter was put on Topamax by her pediatrician for aggresive behaviors. Within a very short time she started having hallucinations. She didnt know what was real and what was not. They were all in sexual or death form. She would cry and was afraid the devil was putting these thoughts in her head. We had to put her in the mental health unit for 11 days. When she came home she was still on the Topamax so I took her off myself. Over the past month her hallucinations are going away, altho we arent quite there yet, and I dont know if this drug has caused permanent damage to her brain. Before she was a fearless child. Now she is afraid of everything. WE are thinking about bringing a lawsuit against the drug manufactures for putting out drugs that are so harmful to people. Its time the government starts working for the people and not for the money. My daughter is currently on Zoloft and is doing much better on that. Now if we could just get rid of all the delusions the Topamax caused.
Comment by Roxanne on 20 December 2009:
I have been on Lyrica for almost Two years. I was put on it for fibromyalgia. I can’t really say if it helps or not, because I’m always in so much pain. But I have tried to stop takeing it, because I have sinsations in my chest that are very uncomfortable and feel the lyrica is the cause. I have brought this to my Doctors attention, and they always run some kind of test , but never come up with anything. I don’t know what to do . I don’t know how to get off of it without going through withdrawl symptoms.
Comment by Missy on 3 January 2010:
I have been on Lamictal for almost a year for severe migraines. I am taking 50 mg in the mornings and 100 mg in the evenings. For the last four months I have had severe mood swings. I can wake up one day and be very emotional. Crying at anything and nothing at all or be very witchy for no reason. My husband could just say hi to me and I could cry so hard I would start to gasp for breath. Or I could rip his head off. I have had no suicide thoughts. My neurologist says the mood swings are related to my periods. I have tracked them since the day they have started and they can be at any time of the month. Sometimes I only have one day like this or two weeks of this. I have seen my gyn dr about this but he agrees with me. It isn’t related to my periods or PMS. What should I do? I don’t want these mood swings to turn into suicide thoughts. Should I seek another opinion from a different neurologist?
Comment by Lizzie on 6 January 2010:
In March of 2008, my neurologist put me on Topamax for migraines. The original dose was 25 mg in the morning and 25 mg at night, increased by 25 mg increments until I was taking 50 mg in the morning and 100 mg at night. During the initial introduction of Topamax, I had severe stomach pain that caused me to miss work for 2 days.
After my body got “used” to the Topamax, my personality completely changed. I was short-tempered and spoke without thinking — like the filter in my brain was gone. I lost my words while I was talking and couldn’t recover. If I didn’t write everything down, I would forget what people told me minutes before. I work in a fast-paced law office and couldn’t function up to par. I was paranoid and couldn’t sleep at night. As a result, my employer grew impatient with me and I was demoted.
I never knew Topamax could cause these problems until I talked to the neurologist in September of 2009. When I mentioned one of the issues, he said “The Topamax has become toxic”. He lowered my dosage to 100 mg a day, but it didn’t help, and I was still getting the terrible, daily migraines. I weaned myself off this poison and have been recovering my short-term memory, etc quite nicely.
Topamax made me nuts for over a year, and no one bothered to advise me of the side effects.
Comment by Brenda on 18 January 2010:
I was on neurontin for years for Neuropathy in feet and legs. Doctor insisted it was diabetic, and cardiology insisted it was cardio related.
I was on 600 mg 3x daily and still had horrid pain, could not function, drive my car, or even think. I would sleep all day, was mean and wanted
to die. I would say if I was not a coward or knew I would not get into
heaven if I did it, I would end my own miserable life. I started taking
suppliments that helped a lot but could not afford to buy them on
SSI and medicaid did and doesnot pay for it.
Well, a catscan that my doctor said would only reveal a bit of ostioarthritis, after 12yrs of pain without anything, we find I have severe
spinal stenosis, therefore finally sent to pain management, now the meds for this is detremental to my Coumadin for artificial valves. Imagine that! Doctor is not happy.
Pain management put me on 50mg of Lyrica to see if I could go to sleep
without feeling this way and wanting to die. Well, it worked and now, Medicaid does not pay for my lyrica, and insisted that I be on 2 meds
they suggest for at least 60 days, one being neurontin (the generic), so
now I am on generic neurontin and generic Elavil (amitrptyline).
In conclusion, our government is now making us take meds that hurt us
before, because we have been off it for more than 12 months.
I have enlarged liver (lupus), fibromyalgia, no more diabetis (suppliments) and am being forced to take poison before they will pay
for my other med………although I find it is bad, it did work, this does not.
Just a bit of info and I could give more, but seems no one is interested.
These Law offices have told me each time that I am not eligible.
Sorry folks but that is some of my story.
Comment by Kathy on 21 January 2010:
daughter has had grand mal and petit mal seizures since 10-she is now 37-The past years have been horrible with physcians not listening when I told them that the meds were making her depressed etc. Went from one drug to another, phynabar, tregtrol, dilantin, topamax, gabitril.
Experienced two drug ” OVER DOSES” on tregretrol–or toxic levels of meds- as the physician worded it…and then the physician INCREASED the dosage — go figure?!- Finially had to switch phy to get someone to listen to us that this med was not ” helping her”-Then was given Gabitril- which SEEMED to be okay– has controlled seizures for the most part. as much as we have been able to tell– But have had two episodes which we ended up at the hospital, both were foo fooed by physicians. Last one was two years ago, and neurologist said that it must have been that she was having anxiety attacks and actually wasn’t having any seizures. Wished they had been able to see her before we were able to get her to the hospital– really scary!!
This episode now looking at some of these posting was classical for the side effects for gabitril. I didn’t realize that some of the other issues she had were drug related, sleep issues, anger issues, comprehension- She was diagnosised years ago with developmental issues, so many of these – sleeping, comprehension, memory, etc- I passed off as her handicap, didn’t realize it could be connected to meds. NOW all of a sudden with no warning, I have found that when we asked for our med refill for this month, that this drug is NO LONGER AVAILABLE- but the drs and pharmasists all say DON”T suddenly quit taking the med– SO WHAT ARE WE TO DO?? I can’t get enough meds to make a transistion, new neurologists had to get into in time, doesn’t sound like other drugs are available and if they are sound extremely scary as well– WHAT HORRIBLE SITUATION to be placed in. GOOD LUCK to all the rest of you who might be in our same situation.
Comment by Nicole on 1 March 2010:
My husband has been taking Depakote (5 of the 500mg) a day for epilepsy for 21 years and now he is acting like a person that has bipolar it has gotten to the point when he takes his med. it makes him sick to his stomach and sometimes he throws them back up whole 3 to 4 hours later it is like his body don’t digest it .we have two kids at home one is 4 and the other one is 2 i don’t need this around them .so we are trying to do everything possible to change his meds.
Comment by Mary on 5 March 2010:
My son, Ben, had a seizure on Jan 28, 2008. We took him to the Mayo clinic which is supposed to have one of the best neurology depts in the world. He was diagnosed with temporal lobe epilepsy caused by concussions. They put him on Keppra. He was not depressed – actually extremely happy because he and his fiancee were moving in together, his PHD work was going very well. He committed suicide on March 12, 2008. These drugs are horrible.