Epilepsy Talk

Death, Depression and AEDs | August 24, 2010

In 2008 headlines blared across the country:  Suicide risk from 11 anti-epilepsy drugs

But we’re still here.

Was it sensationalism by the journalists, irresponsibility by the pharmaceutical industry or laxness of the FDA?

The answer is none of the above.   And, by the way, they forgot to include anti-depressants.

At best, I’d call it a misunderstanding.  At worst, I’d call it manipulation.

Meanwhile those taking these eleven drugs were fearful.  And rightfully so.  Should they throw out their anti-depressants?  Ditch their AEDs?  Imagine what the statistics would have been then!

FDA analysis of nearly 200 studies showed that patients taking 11 specific anti-seizure drugs were twice as likely to have suicidal tendencies as those not taking the drugs.  Yet those drugs used to control seizures also help control the symptoms of some psychiatric disorders.

And they noted that the overall risk remained small.

“All patients who are currently taking or starting on any anti-epileptic drug should be closely monitored for notable changes in behavior that could indicate the emergence or worsening of suicidal thoughts or behavior or depression,” the FDA warned in a letter to health professionals.

In the clinical trials, patients receiving inactive placebo pills had a 0.22% incidence of suicidal tendencies.  Those receiving the epilepsy drugs had a 0.43% incidence of suicide ideation — twice that of placebo recipients, but still a very small risk.

The 11 drugs cited by the FDA (based upon clinical analysis) were:

Carbamazepine (Carbatrol, Equetro, Tegretol, Tegretol XR)

Divalproex sodium (Depakote, Depakote ER)

Felbamate (Felbatol)

Gabapentin (Neurontin)

Lamotrigine (Lamictal)

Levetiracetam (Keppra)

Oxcarbazepine (Trileptal)

Pregabalin (Lyrica)

Tiagabine (Gabitril)

Topiramate (Topamax)

Zonisamide (Zonegran)

* Plus the generic versions of these drugs.

Yet, in truth, the clinical trials showed the relative risk per 1000 patients to be:

Epilepsy 3.53

Psychiatric 1.51

Other 1.87

But here’s the glitch: some people with epilepsy may be clinically depressed, so it’s hard to tell whether it’s the medication or the condition that is causing the suicidal behavior.

One study stated that 80% of the patients with epilepsy were also diagnosed as having a depressive disorder. Upwards of 60% of these individuals had a history of significant episodes of depression.  And 10-32% experienced symptoms of anxiety.

And they forgot to mention AEDs positive effect on bipolar disorder, migraines and other conditions, too. 

So, literally taken, you could say the message was seize and die.  Not acceptable alternatives.

Representatives from the American Academy of Neurology stressed that epilepsy patients are already prone to depression and suicidal behavior, making it difficult to gauge the negative impact of the drugs. On the other side of the coin, many of the medications used to treat seizure disorders can trigger depression.  Dilantin, Phenobarbatol, Celonton, Keppra and Tegretol are among those AEDs which are notorious for this side effect.

All very confusing…

“Unfortunately, the media has disseminated this FDA alert in an alarmist manner that may cause unnecessary concern among patients and families. Great caution must be used in the interpretation of the FDA Alert published 1/31/08 suggesting an increased risk of suicidal ideation and behavior associated with the use of anti-epileptic drugs.

First, it is well-known that many people with epilepsy also suffer from depression and anxiety. Second, stopping anti-epileptic drugs could result in significant worsening of seizures as well as depression and anxiety symptoms. Finally, worsening of symptoms of depression and anxiety are known to occur with starting certain anti-epileptic drugs but this is often temporary. Therefore, it is already part of good clinical practice to monitor the impact of any anti-epileptic drug with regard to psychiatric side effects.”

Andres M. Kanner, MD — Professor of Neurological Sciences, Rush Medical College and Associate Director, Section of Epilepsy and Rush Epilepsy Center, Rush University Medical Center, Chicago

There you have it in a nutshell — from an internationally recognized authority in psychiatric issues in epilepsy and clinical neurophysiology.










  1. Hi Phylis,

    We, also, got to keep in mind that meds affect each of us differently, yet the same, at times. I was on Felbatol. I was energized & happy for the first time in YRS. 🙂 I will never know if the affect would have lasted. I was taken off it 3 mths after starting it due to Bone Cancer ‘scare’. 😦 But, I am well acquainted w/ Phenobarbital &/or Epilepsy Depression. I have always been mildly depressed. Even while growing up. (Possibly Infant/toddler seizures affected me?) But, it did increase during my post meno phase. I used ‘phone therapy’ & talked w/ my GF for HRS, till I felt better, for several mths. 🙂 And as you know (I think) My Sis went thru Severe Depression a few YRS ago. Suicidal thoughts were a daily, constant. 😦 She has had Ep since Infancy, too. But, after trying Dilantin, as a teen, she decided to remain unmedicated. She was/is seeing a Homeopathic DR who upped her Vit D3, for the Depression & started her on Progesterone Cream to cease her Seizures. She is doing Great, now. 🙂

    I guess, what I am trying to say is “I can relate to the problems of EP/meds & Depression.” As w/ all Side effects we need to know what to watch for & I agree! So do our DRS! Problem is Will they? Too many DRS ignore us or are ignorant of the complications of our meds & EP. It truly is up to the patient & caretakers to know as much, if not more then the docs. Unfortunately.

    Kudos to the Professor. Thank You for a great Topic. 🙂

    Love Candi


    Comment by Candi — August 24, 2010 @ 1:20 AM

    • What really riles me is the FDA’s sheer audacity in the face of complete inaccuracy. It’s as if epilepsy and anti-depressants had no connection and the blanket accusation of these drugs being responsible for suicide was totally IRRESPONSIBLE and completely blown out of proportion.

      If we listened to THEM, we’d all be dead. (Well, not exactly, but you know what I mean…)

      I believe you’re completely correct. At the end of the day, we must be our own “doctors.”


      Comment by Phylis Feiner Johnson — August 24, 2010 @ 1:42 AM

  2. Sometimes I go into a deep depression. I have anxiety attacks. It is probably due to my medicines. I am on some that are on the list.

    Keeping busy, I do not have time to think about depression or anxiety. I think that is one of the keys.

    Being happy, put a smile on your face instead of a frown helps too.

    Laughter is the best medicine!! I have never had any thoughts of suicide.


    Comment by Ruth Brown — August 24, 2010 @ 9:50 AM

  3. I think anxiety is more of an organic disorder rather than a reaction to meds. But your solutions are better than any anti-depressant available.

    We could all learn from your positive attitude! 🙂


    Comment by Phylis Feiner Johnson — August 24, 2010 @ 9:17 PM

  4. My daughter was taking Keppra for her seizures. On September 20, 2014, my daughter had a seizure while sleeping and she never woke up. The coroner’s office ruled she died of natural causes from the seizure and the only thing in her blood was levetiracetam. She was not sick and did not show any signs of complications. She just did not wake up. Can someone tell me how can a drug that causes more seizures and death can still be on the market?


    Comment by Heartbroken — December 11, 2014 @ 8:13 PM

  5. Heartbroken, Let me start by expressing my profound condolences.

    What no one seems to tell us is that SUDEP can be cause by a cardiac arrhythmia.

    Often times, it’s not the drugs, it’s the heart, which in turn can be brought about by a violent seizure (such as a nocturnal seizure, or heart failure.)

    “Although the cause of death is unknown, some researchers suggest that a seizure causes an irregularity in the heart rhythm.

    More recent studies have suggested that a combination of impaired breathing (apnea), increased fluid in the lungs (impairing the exchange of oxygen and carbon dioxide), and being face down on the bed all combine to cause death due to impaired respiration.

    In many cases, death probably occurs after a seizure has ended.”



    Comment by Phylis Feiner Johnson — December 12, 2014 @ 9:47 AM

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    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

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    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

    View Full Profile →

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