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Citizens Commission on Human Rights Award Recipient (Twice)
Humanist, humorist

Friday, May 19, 2017

Guest Post by JulieAnn Carter-Winward





I've been traveling a lot lately and am very tired. A recent death of a dearly beloved aunt has meant that I'm putting blogging on hold for a while. Being apart from my partner, whom I love dearly, is also difficult to cope with but it's only for a short time so at least we both have something to look forward to when we meet again in a month or so.

Just as well that I have a guest post to offer readers today.

It mentions the "A" word, you know, the one that many doctors, regulators and industry insiders like to 'play down', like to pass off as nothing more than an 'inner restlessness'.

For once, it's not about SSRIs, it's about a drug that I am not totally familiar with.

The guest post is well worth the read, it's part one of two.

~ Bob Fiddaman


Train Wreck: How Mental Health Care Got Derailed
By JulieAnn Carter-Winward



Have you ever been punched in the gut? Or fallen, had the wind knocked right-the-hell outta ya? Yeah, me too. It can be a humbling experience. But if you know me at all, you’d know: I am anything but humble.

My name is JulieAnn Carter-Winward, and I live in the U.S. of A., where everything “right” comes from, (“herb,” pronounced “erb,” not “herb” with an “h,” you hoity-toity Brits.) I’m kidding, of course. I pronounce it like British folk because, well, there’s a “h” in it.

AH, but I digress: yes, “humility” is a virtue of which I possess very little—and that’s actually sort of ridiculous, because I have countless reasons to be humble. I mean…I suck at a lot of stuff. Seriously suck.

My lack of humility, we could even call it pride or—dare I say it? Hubris—yeah, okay so I’d thought the sin of hubris would be what would eventually buckle my legs and knock the breath clean out of me.

I could not have imagined that my nemesis would be an innocuous, little, round, white pill.

BUT, although Mr. Fiddaman’s blog has focused on SSRIs up until this point, I need to tell you: this little pill was not an SSRI. 

Just like “Charcoal gray is the new black” or “Spoken Word” is the new “Beat Poetry,” or “Fifty Shades of Gray” is the new “Housewife Porn,” (shudder), the new SSRIs are the “second-generation atypical anti-psychotics,” or AAPs. Why? Because drug companies are now claiming AAPs can do what SSRIs cannot, and have not done: treat depression.



Bob Fiddaman has diligently revealed the truth behind the smoke, mirrors, dollar bills and coins behind antidepressant clinical trials, research, (rabid) prescribing and use—all to shed light on the potential lethal consequences of these medications: drug-induced akathisia.

But SSRIs are merely one way to whack the backs of an unsuspecting public’s knees; people searching for the “Little Pill that Could.” The “I think I can, I think I can,” or, more aptly, the “I think it will, I think it will…” hmm, will what?

Make this constant sadness disappear from my life!

Help my son get his life back together. I want to see him smile--it’s been so long.

Get my husband back to his old, jocular self again.

When it comes to antidepressants, these are all wishful thoughts at best, placing hopes in an engine powered by promises, not proof. Thanks to people like Mr. Fiddaman and others, SSRIs have been exposed for what they truly are: engines that not only can’t get you over the hill of unhappiness, but won’t—and on top of it, could very well derail you emotionally or those you love, within days, weeks, or months.

Enter AAPs. Yes, there are some new pills in town, and they’ve been approved by the FDA for not only bipolar depression, but run-of-the-mill, #1-cause-of-disability-in-America-today depression as well. AAPs are the new “add-ons,” booster meds, or, as I like to call them, the caboose medication to add to your impotent drug train, traversing the uphill battle of depression. 

Yet, AAPs, like an errant caboose, can whip around and bite you in the ass when things go the wrong way—knocking you to the ground, breathless—that, or six feet under it.

I should know. I was tied to the tracks.

If you’ve read Bob’s blog long enough, you’ve read tragic, heartbreaking stories of Wendy Dolin as well as other survivors left behind in the wake of loss, after drug-induced akathisia drove their loved ones to take their own lives. I have read stories of people who have had akathisia (past-tense); I felt the horror of their experiences in their words, the utter agony they recall with dread, almost as if they fear it a specter, and to invoke the very name of it would recall its visitation upon them again. Yes, thanks to Mr. Fiddaman’s diligence, SSRIs, and those who manufacture, sell, and prescribe them, are getting an uncomfortable spotlight shined right in their faces.

Today, however, right here and now, you are reading the words of someone who has tardive akathisia; “tardive” means “late appearing,” and in the medical field, that means the side effect doesn’t manifest until after the drug has been discontinued.

I stopped taking the AAP, Latuda, (lurasidone HCl, made by Sumitomo Dainippon Pharma Co., Ltd., and marketed in the U.S. by Sunovion,) almost 11 months ago, and I still battle akathisia, daily. The emotional pain, the quivering muscles but along with the persisting akathisia, I have developed other neurological movement disorders, and they appeared nearly 7 months after discontinuing Latuda: tardive dyskinesia and tardive dystonia.

What makes me rather unique is that for some people, the drug masks “inner akathisia,” the emotional pain, while the patient is on it. Not always, but sometimes. For example, akathisia can also be a withdrawal symptom. Just ask anyone who has tried to get off benzodiazepines. But Latuda did not mask my pain, and it grew, over years, until I was frozen with pain almost every day. I have lived with inner akathisia pain, for over a decade. I have been SSRI-free for years. The only medication I took with akathisia as a known side effect was the AAP, Latuda.  

But I don’t know that “living” is the correct word to describe what my life had been, and some days still, is like. More accurately, I white-knuckle my way through most days. Before my diagnosis last summer in 2016, I lived with a pain with no name, a pain so relentless, there were days when I could barely walk upright. It was misdiagnosed as “agitated depression,” “treatment-resistant depression,” and “severe panic and anxiety,” but no medication gave me relief.

I knew, knew in my BONES, that it wasn’t psychological. This was not a job for my therapist. No, this was physical, biological, and my doctor and I knew it had to do with medication. But he had no idea what “inner akathisia” was. I not only wanted that train to derail, I almost derailed it myself, more times than I care to admit here.

Akathisia dogs my every step; places a pall over every feeling and thought I have, every day. My mind can’t wrap itself around the pain at times—a pain like akathisia should be fatal. At the very least, it should have the compassion to BE fatal and allow the sufferer to die a death that is not self-imposed. It is hell on earth, and it has nothing to do with gods or devils.

I get whacked, despite the drug’s absence, and no one knows why it persists, other than I was on AAPs for 13 years, or how to help me. Am I now, then, finally humbled?

Hell no. I’m pissed.

And as a wise man once wrote…well as the guy who made the magnet on my refrigerator wrote: “It is unwise to anger a poet.” Oh, it’s a little different than that. 

I’ll fix it.



There. All fixed.

When Bob invited me to write about my experience, I had to laugh a little. Write about it? Hell, I’ve been writing about it for years. Years and years—as in, I have so many poems and stories about the mysterious “Pain” that dogged my daily existence, that I have an entire BOOK of writings about akathisia, a book I’m compiling as we speak. So yes, Bob, I’ll write about it, and this is the intro.

If you’d like a broader spectrum/look-see into the history of antipsychotic medications, and the evolution of the drug companies with regards to mental health, as well as my personal take on it and my experiences that led me to this point, please visit my webpage at:


Hopefully, in and of Bob’s good graces, I’ll be writing a bit more next month to address and inform you all about an upcoming awareness project premiering at the end of June. It’s a short YouTube film. I hope you will not only find it engaging, but that you will all help me spread the film’s message like a wildfire across the info-kindling that is the ether.

Thank you for reading. It’s time for me to step away. The Pain-- it’s here. So familiar, and yet it feels fresh and new, every day. Like a wound that is never allowed to heal. A torture, where every day a masked man comes and gouges out the same place on my body. I’d beg him, beg him, to please, give me another pain, in ANY other place.

I often think about that. I think about him, agreeing, but giving me this choice:

 “All right, instead of gutting you in the bloody hole in the upper part of your stomach, I will slash your arms and legs to shreds. But here’s the catch: I will only do that if you let me slash your limbs for a decade. If you refuse, I will continue gutting the usual spot, but only for one more week. Choose.”

Truth be told? I don’t know what I would do. I think I would choose the decade of limbs being slashed. If it meant my gut would be spared one more blow? God help me, I’d consign to the former. The pain…I can’t describe in words. I am undone by it; but I have work to do, and I need to help those who I can help. I need to keep holding on, and I will.

 So yes, I’m sinking, here and now, down to my knees…

…but so help me God, I will not allow my chin to drop—  

not until the makers of Latuda KNOW ME BY NAME.
 
 
~J.A. Carter-Winward

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