Thursday, February 12, 2015

Fycompa, Blue Person Syndrome and Homicidal Ideation

So, I didn't tell ya'll about the conversation I had with The Neurologist the other day when I took Sophie to a routine appointment there. We talked about arranging an ambulatory EEG, and somewhere in the discussion I asked her what the new drugs in the pipeline were looking like. I asked her about that drug that makes your lips blue and she laughed, ruefully. It's obviously a hard sell, she said. I still remember the titters that followed a discussion of this drug, Potiga, by an eminent Neurologist From the East Coast at last June's Epilepsy Pipeline Conference. They made me sick. That side effect is called Blue Person Syndrome. I'm not making this up. If you're one of those folks who believe in Science As It's Practiced in The Greatest Country On Earth, read about it here. If you're like me and believe yourself to be a part of a lifelong Monty Python skit, take my word and read on.


Evidently, there's another drug that The Neurologist is going to try on a few patients. It's called Fycompa. Some of you long-time readers or epilepsy drug enthusiasts might remember that I wrote about this drug a few years ago when it was newly approved by the Almighty FDA. In fact, it was over two years ago that I wrote that post. Please click on it and read it, particularly the end because -- well -- because I told you to.

Are you finished?

Remember that I wrote that in 2012. Sophie was 17. Back then,The Pediatric Neurologist and I batted around the idea of trying it for a bit, but I just couldn't do it. It had become my philosophy to decline all new drugs for Sophie's seizures unless Jesus Himself offered it to us. Cannabis was not even a twinkle in the eye of -- well -- no one I knew back then.

Are you still with me?

So yesterday, February 10th, 2015, The Neurologist brought Fycompa up but also shared with me that THEY (always capitalize the word THEY when you're referring to The Medical Powers That Be, The FDA, The CDC, etc.) have learned that the drug can cause homicidal ideation or rage. Before we start wondering how, exactly, THEY figured that out, let's look at the website for the drug (the banner at the top of the website is reproduced above without the words because apparently THEY don't like you copying THEIR pictures). If you did your due diligence, my post from 2012 highlighted the following side effects of Fycompa:

The drug does have some known adverse effects associated with this drug. The most common ones are anxiety, confusion, imbalance, double vision, dizziness, gastrointestinal distress or nausea, imbalance – some of which may lead to falls on some occasions, and increased weight. The effects of Perampanel on tasks involving alertness and vigilance, such as driving, were additive to the effects of alcohol itself. Multiple doses of Perampanel increased levels of anger, confusion, and depression, particularly when taken with alcohol. Fycompa may lead to euphoria and other similar feelings in some patients. Thus, the drug will be scheduled in the United States. Final labeling and information is not yet available.

As you can see, euphoria is enlarged by me because it's sort of an operative word. 

Now go back and look at the Fycompa website today and notice the new BLACK BOX warning:

  • Serious or life-threatening psychiatric and behavioral adverse reactions including aggression, hostility, irritability, anger, and homicidal ideation and threats have been reported in patients taking FYCOMPA
  • These reactions occurred in patients with and without prior psychiatric history, prior aggressive behavior, or concomitant use of medications associated with hostility and aggression
  • Advise patients and caregivers to contact a healthcare provider immediately if any of these reactions or changes in mood, behavior, or personality that are not typical for the patient are observed while taking FYCOMPA or after discontinuing FYCOMPA
  • Closely monitor patients particularly during the titration period and at higher doses
  • FYCOMPA should be reduced if these symptoms occur and should be discontinued immediately if symptoms are severe or are worsening

Keep reading about suicidal ideation which THEY make pains to attribute also to epilepsy itself. The cynic in me or maybe just the batshit crazy person in me believes that THEY are covering their asses. Basically, epilepsy and depression are roommates, so if you up and kill yourself one day while on Fycompa, I imagine THEY will point out that you might have anyway, without the drug.  Notice as well that this drug is a Schedule III drug and remember that it is being prescribed for children and adults aged 12 and up. Remember that Marijuana is a Schedule I drug and that many in The Neurology World have denied many children who suffer from refractory epilepsy their blessing to try it and are only slowly coming round to even calling for studies, and that's only because families like mine are on the train that's left the station and THEY are trying to catch up.

But I digress.

My other favorite statement on the website is this: Anyone considering prescribing FYCOMPA or any other AED must balance the risk of suicidal thoughts or behavior with the risk of untreated illness.

Fycompa basically went -- in two years -- from being a drug that can cause Euphoria And Other Similar Feelings to one that can cause a person taking it to fly into a murderous rage. Oh, and you can take the drug if you're twelve years old.

You'd know what was up, basically, if I decided to try this drug on Sophie. Go ahead and kill me now, I'd say as I gazed into her big, dark eyes.

I can't count the number of times over the last couple of weeks I've read the words of citizen scientists, of scientists, of doctors and journalists and mommies and daddies and presidents and Oprahs and Willy Wonka himself blathering on about their trust in THE DATA AND THE EXPERTS.

What's my point? I think you know it. This is my experience, and I'd venture to say that it's tens of thousands of other people's as well. These are the facts. This is the world I interface with every single day and have done so for two decades, and it's insane.


  1. And as I watch my beautiful ambitious 16 year old daughter feel crappy every single day, and sink deeper and deeper into sadness and anxiety I feel despair. But what is there to do?? If her response during the VEEG is any indication, without the meds she would probably be having t/c seizures multiple times a week. I feel completely squeezed between a rock and a hard place. Trying hard to hold onto hope.

  2. Rob works for a drug company, writing training courses. We got into a big discussion last night, after watching John Oliver's really fabulous takedown of Big Pharma, about the ironies of working for what really is the evil empire. Have you read Margaret Atwood's "Oryx and Crake" trilogy?

  3. Is it 2015? Is it really? How far back are these people? It's preposterous! I just want to shake them awake. Shake is too mild of a word.

    There are 13 labels under this post, it encompasses so much of what you have to deal with. So sorry that all this chaos is added to your lives.

  4. I feel as if we are all living inside a Salvador Dali painting. Unbelievable. How could this be the way things are. And yet it is.

  5. Wow, just wow. Makes absolutely no sense.

  6. If I really start to think about our medical system I feel like my head will just explode right off my body. I knew a lot about all of the junk science involved in childbirth these days- things which have become accepted practice- which do not only help the process but which, in fact, hinder it and endanger mother and child.
    You have opened my eyes to a whole other world. One in which a pharmaceutical company can get a drug approved which does not only not offer much promise to truly help the patient, but which also might kill him or her. Or cause there to be...murder? Seriously?
    When was "first do no harm" abandoned as a medical philosophy? Because it's patently a lie these days when used in the context of so much of the medical profession.
    And somehow, I think it all comes down to money.

  7. I have seen people the side effects of the drugs that the children who perpetuate school massacres are on being discussed before ... but I'm not sure anyone wants to hear about it.

    Prozac can cause suicidal and homicidal motivation and ideation in young people. But hey, that's rare.

    Well over 100,000 Americans die each year from prescribed drug use. The medical system is saving lots of people, I just wonder what the limit of acceptable collateral damage is.

  8. The fuck?

    But the shareholders need to be taken care of and need to make record profits!

  9. The FDA accepts fake studies, wrong studies, lying studies. It's just ridiculous, all of it. Read all about it.

  10. I just do not get it. Why an oil that works is classified as it is and this carp isn't. So backwards.

  11. Money, money, money.
    And you can't make it (the drug) at home.
    God, I'm so glad you followed your gut, and didn't give Sophie that concoction.

  12. It's a bat shit crazy world where people are getting rich at the expense of children

  13. It's a bat shit crazy world where people are getting rich at the expense of children

  14. A bit late to the discussion now, but thought you might like to hear from real life Fycompa experience. My other half has refractory epilepsy. Neurologist said "hey let's try the new drug on the market". Within months our lives changed. My once loving, kind and gentle partner was now an angry, irritable and suicidal new person. It took a second Emergency room visit to finally get him off the Fycompa and gradually our lives returned to normal with some battle scars to prove what we went through. Never again! He's now on dietary therapy and although he still has seizures, at least he's himself and enjoying life once more.



Related Posts Plugin for WordPress, Blogger...