Interesting Epilepsy Pharmaceutical Side Effects, Part 42

Today's Interesting Epilepsy Pharmaceutical Side Effects presentation will be about the drug ezogabine. If that name is too much of a mouthful for you, we can also call it Potiga because Potiga is simpler, more catchy and conjures up a sweet-smelling weed, perhaps, and the babbling of a baby. I imagine the folks who sit in the airy rooms of the marketing departments of the big pharmaceutical companies have a grand time figuring out what to call the latest chemical being thrust upon the epileptic populace. What would be catchy for a neuronal potassium channel opener? Bart asks his group of young design hotshots. We need something that sounds appropriately serious with a bit of fluff to allay anxiety. Anyone?

I digress.

Some of you particularly alert students of epilepsy pharmaceutical side effects might remember that several years after Potiga was approved for use in adults, the FDA in 2013 had to issue a box warning because of the strange reported side effect of skin discoloration and eye abnormalities characterized by pigment changes in the retina. I heard a  bigwig doctor at last year's Epilepsy Pipeline Conference up in San Francisco speaking to a group of professionals about the drug and the unexpected side effects that showed up years later. She and the group of professionals in the audience actually chuckled when she explained that people were coming into neurology offices with blue lips and fingernails. Reader, you know I love a chuckle and have a sense of humor that is as dark as a guillotine (or is it a gallow?), but hearing those docs titter made me sick to my stomach. I know they were laughing with rue, but I couldn't help but think doctors aren't allowed to laugh about things like this. I was horrified because I had discussed Potiga a couple of years before as a possible add-on for Sophie, and that discussion was with Sophie's pediatric neurologist. No mention of blue lips, nail-beds and eyeballs was made because these were not known, but identified adverse effects included urinary retention, neuropsychiatric symptoms, suicidal thinking or behavior, dizziness and somnolence, QT interval effect, and withdrawal seizures. That list is pretty much par for the old epilepsy drug course, but I decided to pass anyway as I was still in the middle of my sacred vow not to accept any more drugs unless Jesus Christ offered them to me. I imagine that you particularly alert students of pharmaceutical side effects might have also raised your eyebrows that this drug was approved for use in adults back in 2011.  Adults, not pediatric patients.

Ahem.

But that's yet another digression.

The timeline for Potiga is thus:

1. FDA approves Potiga in June, 2011
2. FDA issues Drug Safety Communication warning in April 2013 about the retinal abnormalities and blue skin discoloration
3. FDA announces approval of label changes to the drug to account for the above in October 2013, the so-called box warning.
4. FDA okays current label to manage eye, skin problems June 2015. Here's the information:

News Alerts > Medscape Medical News

FDA Okays Current Label to Manage Eye, Skin Problems With Potiga

Susan Jeffrey

 DisclosuresJune 16, 2015

Evidently,

FDA review of additional safety reports does not indicate that the pigment changes in the retina observed in some patients affect vision," the FDA statement notes. "Skin discoloration associated with the use of Potiga appears to be a cosmetic effect and does not appear to be associated with more serious adverse effects.

You can read the Medscape article here if you'd really like to read it. 

What's my point beyond the rest assured that your blue lips and fingernails are just cosmetic and you have no need to worry about losing your vision except you still have to monitor it and notify your doctor if you feel suicidal or haven't pee'd in days?

My point is that we rarely hear about all the shit going on with epilepsy pharmaceuticals and the chances we are taking every single day when we give them to our children.

When a neurologist claims that they do not have enough information about cannabis to prescribe it or recommend it, they are being disingenuous if they don't also say that they don't know about Potiga or Banzel or Vimpat or Fycompa or Vigabatrin or Felbatol or hemispherectomies or vagal nerve stimulators or long-term use of benzodiazepines. The information about cannabis has been suppressed, buried, stymied for a couple of decades short of a century, but it exists.

What's that expression? The gig is up? The emperor has no clothes? Help me, Rhonda.

Intimidating Words, Part Two

Skeletal and labyrinthine

Pharmacoresistant:
(from Dictionary.com)

Did you mean pharmaco-?

More suggestions:

Epileptogenesis:
(from Dictionary.com)

There are no results for: epileptogenesis, but we are adding new words daily.

Here are some of our most recent additions:

• metacognition
• epigenetics
• tranche
• digital divide
• nano
• declutter
• paradigm shift
• confusticate
• aha moment
• workaround
• eco
• munge
• artisanal
• exoplanet
• aggregator
• ultracrepidarian
• input device
• multiversa
• kaizen
• pixelate

1. 
   

I received an email from MedScape this morning with Targeting Pharmacoresistant Epilepsy and Epileptogenesis in the subject line. This was the exact title of the article referenced, and I shrank when I saw it. My mind wanders to wondering. The names for drugs and the words cobbled together by the Science Powers That Be make me squirm. I can't find their definitions in the dictionary. There are, apparently, not even suggestions for these words or even substitutes. I do like the word confusticate, as referenced above. It means to confuse or perplex; bewilder. 

Epileptogenesis is the gradual process by which a normal brain develops epilepsy. Pharmacoresistant epilepsy can be practically defined as failure to achieve seizure freedom following adequate trials of two tolerated and appropriately chosen AEDs.

The weight of metaphor. 

Oh, to be a person who embraces literalism.

literalism

[lit-er-uh-liz-uh m] 

 

• Word Origin

noun

1.

adherence to the exact letter or the literal sense, as in translation orinterpretation:

to interpret the law with uncompromising literalism.

2.

a peculiarity of expression resulting from this:

The work is studded with these obtuse literalisms.

3.

exact representation or portrayal, without idealization, as in art orliterature:

a literalism more appropriate to journalism than to the novel.

I love the word skeletal. I love the word labyrinthine. Our Chinese flame tree has finally dropped all but a few clumps of brown leaves, and its branches reach up to the blue sky and cast skeletal shadows on the grass, the patterns labyrinthine.

I hate the word pharmacoresistant. I hate the word epileptogenesis. Sophie's seizures resist a vast pharmacy of chemicals, and the gradual process by which she acquired epilepsy - - the epileptogenesis and resultant pharmacoresistance  -- have stripped me to the bone, rendered me skeletal, clanking and clinking the labyrinthine paths.





Intimidating Words, Part 1

Jumping into (again) the vaccination fray (at the edges)

Last March, I wrote a post that I titled Why I Am Not Irresponsible, A Jerk, A Moron, A Fucker, An Anti-Vaxxer Worthy of Your Contempt with an Addendum. You can read it here. Other than a post that I wrote about six years ago that I titled Big Guns (which was about some new seizure medication we were going to try, but you know all the gun nuts were googling that term), the vaccination post has received the most hits -- thousands and thousands of them. I wrote then that I wouldn't ever write about the subject again, but here I am with a bit more to discuss, prompted not only by the latest tiresome admonition from a Facebook friend and her friends to vaccinate your kids, damn it! based on a cheesy article in The Hollywood Reporter, but mainly to discuss a Medscape article that appeared in my email this morning. The title of the article is Most Vaccination-Onset Epilepsy Has Genetic, Structural Cause.  Unless you're lucky enough to have a Medscape account (reserved for those of us who hold out hope that we'll discover the reasons for why our children seize or develop any number of horrifying diseases by staying on top of things), you might not be able to read the entire article, but the gist of it is basically in the following two paragraphs:

In most children whose epilepsy started following a standard vaccination, there's a genetic or structural cause, and about a third of cases of epilepsy triggered by a vaccine are relatively benign, a new study suggests.

These results indicate that vaccination-related epilepsy doesn't necessarily have a poor prognosis, said lead author Nienke Verbeek, MD, clinical geneticist, Department of Medical Genetics, Division of Biomedical Genetics, University Medical Centre Utrecht, the Netherlands.

The findings, added Dr. Verbeek, should come as a relief to clinicians and parents and increase their confidence in vaccination.

I found the rest of the article interesting and compelling because it addresses something other than the autism/vaccination clusterfuck -- namely, that vaccinations do carry risk, particularly if a genetic/structural abnormality exists. While the article might be reassuring to some (and I believe that was its intent), I can't help but wince at phrases like relatively benign and doesn't necessarily have a poor prognosis for obvious reasons. I balked at the explanation that a child who began to seize after vaccination would have begun seizing anyway, if he has a congenital abnormality or genetic predisposition to do so. There's something casual about the language that terrifies me, perhaps triggers some deep, learned response to trauma and the disconnect I felt very early on from the people in positions of power. There is no discussion of those whose seizures are not relatively benign or those whose prognosis is necessarily poor.

In an argument I got into most recently on a friend's Facebook thread, I was accused of "seeing only what I wanted to see." This person also took offense to my admittance that I wasn't entirely trustful in Science and the Powers That Be. She said, and I quote directly, When I make medical and safety decisions for my children I ONLY want science and academia informing those decisions. Let's face it -- about then I cracked up with both laughter and residual insanity from two decades of dealing with science and academia. I think I might have flippantly told her that I envied her faith because it implied she had never had it tested. My feelings about Science with a capital S have evolved over time, and trust me when I say that it's not a great lesson to have "learned." I guess you could compare it to the statements that very old and wise people make about how the older they get, the more they realize that they don't know shit. I imagine that many of us who have struggled with the medical system and how it treats and studies chronic illness have the same reservations, and I'm not sure if that will ever change in spite of Medscape's earnest attempts to do otherwise.

When I right myself from the intial reaction after reading the Medscape article and study, though, I have some questions. One of these is: What if we had known that Sophie had a congenital abnormality or genetic condition that predisposed her to seizures, so we waited to give her vaccinations in the hope that she might get a bit more development under her proverbial belt before the odyssey of drugs and seizures that would hypothetically be her future? The earlier seizures begin, the poorer the prognosis for development -- for obvious reasons. Children who develop infantile spasms at a later age than Sophie (three months), who have already learned to walk, let's say, or even to say words, can sometimes retain those abilities, particularly when their seizures are controlled. If a three month old baby's brain was given a break from medications and seizures at such a young age, when it eventually did seize, would the parts of it unaffected by prenatal insult be in a better position to compensate for the insult? The brain is elastic, after all.

I'm getting tired here, of typing. This subject always makes me feel physically ill, to tell you the truth. I took a break to speak with a friend who is exploring the use of cannabis for her own 15 year old son who suffers from epilepsy and cardiac issues. She lives in a state where it's illegal, and she's not getting any support from her neurologist, so I'm telling her everything I know, all the anecdotal evidence I have that Sophie's seizures have dropped nearly 95% since she began taking CBD. I wonder if some professional from the land of Science is out there, taking notes.

***Just in case you get your panties into a giant wad on the top of your head or around your neck, I'm slowly vaccinating my sons. I am -- I repeat -- NOT anti-vaccination, but I am -- I repeat -- emphatically dubious that Science has all the answers.

I'm writing, I really am

via Distractify

Just when I thought there was really nothing, nothing going on today other than to patiently wait for The Teenagers to arise from their boudoirs at noon, I stumbled upon both the website where the photo above appeared and Medscape, who emailed me Rare and Unusual Psychiatric Syndromes. Distractify is totally terrific, chock-full of amazing black and white photos of both celebrities and ordinary people doing ordinary and extraordinary things. You should check it out if, like me, you're dilly-dallying with your writing, waiting for your own teenagers to arise from their slumbers and go out into the wide world to make something of themselves, or waiting for the district school bus to bring your daughter home from her extended school year program.

If one of those teenagers does wake up, you can quickly switch over to MedScape, the interminably boring academic medical site where those of us who have children born before the Golden Age of  Easy Information (basically, Huffpost users) used to slog through -- usually in vain -- trying to figure out what might help our kids by reading abstracts about neurologic conditions, pharmaceutical studies and rare diseases. Today, Medscape sent a tantalizing abstract entitled Rare and Unusual Psychiatric Syndromes. It's a smorgasbord of a slideshow detailing the strangest psychiatric conditions known to man and womankind, including many that I've heard of (Stendhal Syndrome! Love it!) and many that I haven't. My favorites today were Paris Syndrome, an unusual state exclusive to Japanese nationals who experience a mental breakdown while visiting the famous French capital, Foreign Accent Syndrome, whereby someone speaks their native language as if they had a foreign accent and Alien Hand Syndrome, the misattribution and belief that one's hand does not belong to one's self but that has its own life.

Wow. How can anyone be bored with stuff like this to read and wonder about? If The Teenagers even speak of boredom or ask me what they can doooooooooo, mom? I might fake Capgras Syndrome, characterized by a person's delusional belief that an acquaintance, usually a spouse or other close family member, has been replaced by an identical looking impostor or several doubles.

I don't know who you are! I'll say to the strange yet incredibly good-looking teenagers that ask me to drive them somewhere. Then I'll watch as my hand, as if alien, places itself on the steering wheel and drives the imposters to lacrosse practice in some godforsaken place in the deep, dark Valley.

LMAO

I only recently learned what that acronym means and did so by googling it. Today I LMAO when I got this in my inbox from MedScape:

Acute Provoked Reflex Seizures Induced by Thinking

Does that make you LMAO or am I truly going insane?

There must be a better title for this Medscape article

Here are the newly published articles in your area(s) of interest for June 29, 2012: Epilepsy Reason for Optimism in Epilepsy? Medscape Neurology   ADD MORE TOPICS »   And for those of you who take things quite literally, I'm aware that there might be a treatment on the horizon that gives those who deal with the scourge hope, but as a minor wordsmith and lover of the embellished, I'd rather the title of the academic paper was: Reason for Not Killing Yourself Over Your Child's Refractory Epilepsy.

What would you do?

Every few days or so, I get an email in my inbox from a search engine called Medscape. I subscribe to the search engine and have indicated that I am interested in any articles pertaining to childhood epilepsy and neurology. Generally, the articles forwarded are scientific in nature --quite dense -- and I read no further than the abstract. Lately, there's been quite a lot of buzz about SUDEP (sudden unexplained death in epilepsy patients) -- nothing like an acronym, right? Traditionally, this has not been a subject that neurologists are willing to discuss with their patients, and the reasons are diverse. However, with the advent of "patient-centered care" and more involved parents, there is a demand for information, complete information, and I've noticed that SUDEP is getting a lot more publicity.

So, today, in my mailbox I get this on the subject line:

High Rate of Death in Childhood-Onset Epilepsy

Do I go there? Do I become more informed? Or do I stick my hand in the sand and la di dah out? Those who know me can probably figure out what I do, but I'm wondering whether I should.