Epilepsy Talk

Death, Depression and AEDs | March 3, 2020

“Suicide Risk from 11 Anti-Epilepsy Drugs,” headlines blared across the country.

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 an FDA Alert 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 Clinical Neurology, Director of the International Comprehensive Epilepsy Center, Miller School of Medicine, University of Miami, Florida

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

References:

https://www.epilepsy.com/learn/early-death-and-sudep/suicide-risk

http://www.coping-with-epilepsy.com/forums/f22/suicide-risk-11-epilepsy-drugs-2416/

http://www.webmd.com/epilepsy/news/20080131/suicide-risk-from-11-epilepsy-drugs?src=RSS_PUBLIC

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3108698/

https://www.aesnet.org/about_aes/position_statements/aes%20position%20on%20risk%20of%20suicidal%20thoughts%20%26%20behavior%20with%20antiepileptic%20medications

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3132858/

https://www.who.int/whr/2001/media_centre/press_release/en/

https://www.medpagetoday.com/resource-centers/focus-on-epilepsy/ask-expert-andres-m-kanner-md-psychiatric-comorbidities-patients-epilepsy/1047

 

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23 Comments »

  1. Funny how there can be so much to say, yet I don’t know what to say at the same time?

    Liked by 1 person

    Comment by Kathy S.B — March 3, 2020 @ 7:45 PM

  2. It’s like I phoned my pharmacist today and enquired as to whether I should have or will have my medications should me (or my husband who has a heart and diabetes problem) because INCASE we get sick? Or because of COVID-19 should it come closer to home? I was told “if we have your medications we have them. If we don’t we don’t”. I responded with “that’s why I’m phoning now and not later. However on that note no wonder epileptics have HIGH ANXIETY PROBLEMS!!”.

    Liked by 1 person

    Comment by Kathy S.B — March 3, 2020 @ 8:02 PM

    • They could care less about you ,only the money you generate for them.

      Liked by 2 people

      Comment by Tom — March 3, 2020 @ 8:10 PM

      • Sadly, so.

        Like

        Comment by Phylis Feiner Johnson — March 3, 2020 @ 8:12 PM

      • EXACTLY!! And on top of that our province is cutting nurses and doctors and then they wonder why we get anxious or unnerved.

        Liked by 1 person

        Comment by Kathy S.B — March 3, 2020 @ 8:14 PM

  3. Well, that was really helpful.

    The CDC (or some spokesperson) has advised that you have an extra 30 days supply of your medication on hand.

    That’s terrific. But have they ever had to deal with an insurance company?

    I can just picture calling them and saying: “In case of the Corona virus, I may need to have my meds on hand.”

    And do you think they’re going to say :”Yes, certainly,” just in case?

    Good luck! 😦

    Liked by 1 person

    Comment by Phylis Feiner Johnson — March 3, 2020 @ 8:10 PM

    • My daughter was away during her “reading week” from university. She came home and was sicker than a skunk!! Low and behold WE ALL CAUGHT IT TOO!!!!! Normally I have a problem with “low blood pressure” and my new watch kept triggering and triggering yet I never had a seizure I had/have a cold and flu!! Turns out my watch even tracks my blood pressure and it kept trigging because my blood pressure was actually through the roof!!!!! I took the watch off and someone had to deliver our medications. I swear we’re FINALLY just beginning to get a bit better now! I couldn’t take it anymore I made myself get up and start cleaning and washing up my floors, walls, and you name it I was and sprayed it all down!!!!! And the stripped and washed all of our bedding. I finally turned the news on and found out what’s happening in our world!! WOW!!!!!!! Please all be well, ALWAYS WASH YOUR HANDS COUGH IN A SLEEVE and TAKE CARE OF YOURSELVES!!!!! Because WE ALL MATTER TO EACHOTHER and OUR FAMILIES AND FRIENDS!! 😊🙏🏼🦅😇💕

      Liked by 1 person

      Comment by Kathy S.B — March 3, 2020 @ 10:32 PM

      • Great news about the watch. Not so great news about your blood pressure.

        Glad you’re getting better, but was it really necessary to go on a cleaning binge? (If so, you can come over here!)

        And yes, the washing of hands religiously is really the most you can do to arrest the Corona virus.

        Liked by 1 person

        Comment by Phylis Feiner Johnson — March 4, 2020 @ 9:24 AM

      • Lol Hi Phylis 😊 we all caught something and they only way to ensure we don’t catch anything again was to make sure our house was nice and clean. Besides it’s always nice to declutter as well. I think we’re just all sick of being sick!! So it came down to the majority consensus (lol we all agreed BUT MY HUSBAND!!) but we did it anyways 😊. It’s kind of funny when everyone is telling me I’m not supposed to sweat!! I just drank more Gatorade 😊

        Liked by 1 person

        Comment by Kathy S.B — March 4, 2020 @ 5:28 PM

      • NO GATORADE!

        Hypernatremia

        From the ‘Runners World’ perspective, hyponatremia is a fatal side effect caused by overdrinking in athletic sports.

        This is the over hydration of cells causing very low sodium levels in the body.

        This is deadly, and athletes should note that too much Gatorade intake in sports is risky.

        This is contrary to popular belief because often people believe that drinking too much Gatorade is beneficial.

        http://www.med-health.net/Gatorade-Side-Effects.html

        Liked by 1 person

        Comment by Phylis Feiner Johnson — March 4, 2020 @ 5:59 PM

      • YES YOU ARE COMPLETELY RIGHT!! Thank you Phylis 😊🙏🏼🦅💕

        Liked by 1 person

        Comment by Kathy S.B — March 4, 2020 @ 6:37 PM

      • Goodmorning Phylis. Yes I know in the marathon/some athlete Venues they use what are called “BONKS”. Apparently their some form of high sodium tablet that help the runners be able to maintain the sodium levels due to the loss of sodium while their running or playing major sports. Personally I liked beef jerky (lol another old lesson taught to me!!) please have a very good day today and please take care of yourself 😊🦅💗

        Liked by 1 person

        Comment by Kathy S.B — March 5, 2020 @ 10:57 AM

      • Yes your right Phylis. I must admit though for one of first times ever I actually told my husband “THANK GOD/CREATOR OUR HOUSE ISN’T A MANSION!!!!! Lol but this sure made me feel like it is HUGE!! Lol I made it threw 2 ROOMS and I had to take day off lol 😂. I’ll start again tomorrow

        Liked by 1 person

        Comment by Kathy S.B — March 6, 2020 @ 10:29 PM

  4. I have been told that some people regularly get their monthly supply one or two days early to build up a reserve. Others don’t take say one pill out of 21 a week to build up a reserve. Once you have a month or so saved up you can relax but store your pills in a cool dark dry place to slow down the rate of deterioration. Always use your oldest pills first. I have been told that Pills can have a shelf life of up to five years and capsules a shelf life of up to two years if stored properly.

    Liked by 2 people

    Comment by Michael H — March 3, 2020 @ 9:33 PM

    • I’m not too sure of skipping a pill. I suppose it’s ok if it’s just one pill.

      But when I forgot to take my night meds, I was a total mess the next day.

      Interestingly enough, not my day pills. (???)

      But the safety and shelf life information is amazing and good news to hear. (Not to mention, comforting.)

      Thanks, Michael!

      Liked by 1 person

      Comment by Phylis Feiner Johnson — March 3, 2020 @ 9:39 PM

    • Thank you Michael I’m going to start trying to do that!! I appreciate your suggestion 😊

      Liked by 1 person

      Comment by Kathy S.B — March 3, 2020 @ 10:15 PM

  5. Several 0f the 11 AED’s I had tried & LAMICTAL XR is 1 i am still on taking just 100mgs daily. But when I first tried it at the NIH, they tried me taking between 300 & 400mgs & i was getting the SJS rash where I did not like scratching all day long. I was then told there was a bad bacteria at home in my bed or elsewhere & I never took LAMICTAL before going to the NIH & I set that doctor straight then & there. Then they tried me on KEPPRA & that never worked, and after my brain surgery I was told I needed to be on PAXIL and ADD, & it made me DEPRESSED as i was not depressed that I had to be on it to start. When you survive a 10 hour brain surgery, you are not going to be depressed after coming too. TEGRETOL years ago made my heart race at 250 X’s a minute & it made me to have 60 petit mals in 2 days while taking 800mgs a day, after i was taking 600mgs a day making my heart beat a little fast, & having 30 petit mals in 2 days to where before taking that those 2 doses I NEVER had that problem with TEGRETOL, and since then I never gone back on it. then ZONEGRAN could had done me IF I said I would try taking 75MGS or more a day. I ended with seizure activity while taking 25 & 50mgs a day as i took myself off of the 50mgs before being on it less than 1 week. ZONEGRAN does have MSG toxins in it which is in the vegetable & or soy oils in the drug. SO I later tried on 25 & 50mgs using pure 100% virgin COCONUT OIL taking 1 tsp when I took the 25 & 50mgs & I DID NOT have any seizure activity, BUT I was not going to use coconut oil every time I had to take any AED of 50 or 25mgs at that. Don’t ever tell me tyhat BIG PHARMA MAKERS do not know what they are putting in ALL & EVERY AED / ASD & the ADD’s as they know what any human brain will react to those toxins, while messing & ABUSING ALL BRAIN CHEMISTRY to where any of us will be MORE chances of having a seizure then less chance of it happening. M O N E Y to them is what it’s all about, no matter how they have the desire to ABUSE as many brains as they can, & the AAN & all seizure advocate groups cares very little & does nothing about it. LOOK at what they promote & HONOR MORE than the people who are wanting seizures to STOP so we can live a NORMAL life.If they themselves have no seizures, then to them THAT is no issue for them to worry about helping US with, instead of the BIG PHARMA & GADGET & SENSOR industries.

    Liked by 1 person

    Comment by James D — March 3, 2020 @ 10:10 PM

  6. You’re right. Follow the trail and you’ll find the money.

    However, I, too, have had great success with Lamictal.

    At first it made me crazy/hyper. (No SJS rash).

    But once I settled down, it was wonderful. 99% seizure-free for 10+ years.

    I’ll take it. 🙂

    Liked by 2 people

    Comment by Phylis Feiner Johnson — March 3, 2020 @ 10:21 PM

  7. Welcome to voodoo science, sorting out the whole complicated FDA informations & disinformations, warnings, alerts, instructions,,, made far more alarming & confusing than the side effects or benefits of the medications.
    Failing to attain reliable & credible reference to cure their medical difficulties, the patients can only hope their prescription are doing more good than harm, disproving FDA’s voodoo science.
    Gerrie

    Liked by 2 people

    Comment by BahreNegash Eritrea — March 4, 2020 @ 1:18 PM

    • Or we can research, research, research, (nobody else does) and advocate for one another.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — March 4, 2020 @ 2:51 PM

      • And thanks for all the research you do & share the information with us, many us had no idea where to turn into nor informed support system, when we started having seizures & didn’t even know anything about Epilepsy.
        Learning how to survive & overcome every seizure & deciphering the complex & complicated medical data & terminology associated with the prescription medications has been a long journey to have come this far, but thanks to ALL the members of EpilepsyTalk sharing their experiences on this forum, we managed to carry on with our lives.
        The journey must go on!
        Gerrie

        Liked by 2 people

        Comment by BahreNegash Eritrea — March 4, 2020 @ 6:28 PM

  8. Headlines about the disabled seem almost always to appeal to the emotions of the reader. Maybe outrage and pity sell papers. And in following the comments to some of these articles, I am struck by the hatred shown to disabled people, most often from strangers, as well as kindness, usually from friends and relatives.

    Perhaps we should take any public reference to ourselves as being posted in too-bright psychedelic color meant to address someone else, not us. In fact, headlines rarely include us at all as nuanced human beings. All the more reason to speak up about what our lives are really like.

    Liked by 1 person

    Comment by HoDo — March 5, 2020 @ 7:39 AM

    • I think it’s because epilepsy is invisible.

      The consequences of a seizure surely aren’t and send strangers into a tizzy.

      It’s a curse come true. And after that, you might as well be a pariah.

      Like

      Comment by Phylis Feiner Johnson — March 5, 2020 @ 9:41 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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