Friday, September 20, 2019

Comments by J.A. Carter-Winward

Showing 4 of 4 comments.

  • Rcarpane,

    Respectfully, and “For the love of God,” please start researching medications like “Gabapentin at high doses.”
    Anti-seizure meds can actually worsen neurological damage that’s been done by psychotropic medications. I know this because I’ve taken them, and that’s was my experience.

    While “doctors will prescribe it like candy…” I assume you are not. A doctor, that is. And doctors handing medications out “like candy” is the reason most of us are in pain and have severe neurological damage.

    “If that doesn’t work,” perhaps you ought to stop reading about akathisia, since it seems to vex you…
    Mirapex is also a side-effect nightmare and I’m not willing to risk further pain and damage by submitting to a guessing game.

    As for RLS, the pathophysiology might be similar to akathisia, but that is not the same as an “advanced form.”

    Example: an advanced form of “mild chiding” would be “sarcasm,” yet many people confuse irony and sarcasm all the time.

    And while it’s ironic you wrote two identical comments on two very different subjective experiences of akathisia, (this article, and the poem by Marci Webber on this site called “Psychotic Akathisia”) it’s also ironic that your comment(s) seemed to miss the thrust of both our pieces, while providing reductive answers to questions that were not posed.

    You see, this article is not about how to best treat or medicate akathisia, it is about the wanton disregard specific medical professionals displayed when I presented with drug-induced neurological movement disorders, specifically tardive akathisia, their attitudes toward me, along with their lack of relevant knowledge about how akathisia presents individually and subjectively.

    So, in relation to your comments, Ncarpane–THAT is irony in it’s most sublime form:

    Your comment(s) show a wanton disregard toward our experience and words and then you threw out the names of more brain-altering medications–without the relevant knowledge to do so–as if they were candy.

    Which, of course, they are not.

    Sincerely wishing you peace–

    J.A. Carter-Winward

  • I don’t know how I missed your comment. Probably because I try not to dwell on this subject too much. But I read your words and I am simply blown away. You sound like you’re maybe in the UK?

    As I write my song about this nightmare, I’ve been paying attention to the music coming out–that’s been coming out–and these children that were medicated, they are in pain.

    So many songs about psychiatry. It reminds me of the song I loved in high school by the punk band, Suicidal Tendencies, “Institution.” When parents began pathologizing teen behavior–normal teen behavior–I might add, and doctors began to tell them, “Your child needs medication.”

    And all I wanted was a Pepsi.

    Thank you for your words of wisdom ,validation, and hope–yes, I find hope in them. Because if *you* see and saw what’s happening, other good men and women in the medical profession are seeing it, too. And that gives me hope.

  • Thank you for your comment, and yes, it is a very important distinction. The article had to be edited for length, but originally I’d included the chart for the cluster of drug-induced neurological movement disorders (DIMDs) and each are distinctive. Dystonia, not dyskinesia, is the second source of pain for me, and it is progressing.

    However, dystonia presents in so many ways, to arbitrarily say “I have dystonia,” and for people to say, “Ohh, yes, I know what that is” is akin to saying, “I have cancer.” No one says, “Oh, yes, I know what that is.” They say “Where? What kind? What stage? What is the prognosis?” Stage I skin cancer is a very different beast than Stage IV pancreatic cancer.

    Dystonia is, within itself, a cluster of different movement disorders and the etiology of it is as diverse as its presentations. For example, “childhood onset” is totally different than “task-specific” dystonia. Task-specific includes, for example, “writer’s cramp” and “musician’s cramp.” What would happen if a doctor said to a concert violinist who played for the London Philharmonic: “Your hand seizing up like this when you play the violin is a subconscious desire to QUIT the violin and do something else. Perhaps golf or soccer? Tell me about your childhood.” Think about that. It’s absurd.

    As to “my” presentation of dystonia, the short answer is that I have drug-induced, acquired dystonia that effect several parts of my body and in different ways. The fact it shows up in public more than when I’m home, in my “safe, controlled” environment is decidedly INconvenient for me and others with dystonia, but some people think it proof-positive that (drug-induced) acquired dystonia is a “cry for attention.” Trust me, I can think of better ways to get attention than suddenly having my back or neck seize, causing me so much physical pain, I am nauseated.

    My presentation of akathisia is from having it for over 14 years now. Imagine the “fight, flight, freeze” response in your brain on HIGH-ALERT, all day, every day. Isn’t it conceivable, then, that after a while, someone’s brain might perceive the constant barrage of fear from their limbic system as “pain”?

    I had a doctor suggest that the film, and now this article, is my “payoff.” That it’s an attention-grabbing behavior which supports their conclusions. I was stunned. “Yes. Because THIS is how I want to be remembered.” Any writer or artist will tell you: we want to be known and appreciated for our WORK, not for a gimmick or “schtick.” Certainly not for an illness. Pretty sure Michael J. Fox wishes his great roles in many movies and television were the first things that come to mind when we speak of him, not Parkinson’s.

    If you were to read any of my previous work–poetry, novels, short stories–less than .001% of my writing has to do with “bipolar disorder,” or the pain of akathisia. The singular exception is the book to create awareness coming out next year. So there’s no history of using any medical issues or social platforms to call attention to my work. It stands alone and I am quite proud of what I’ve been able to accomplish while dealing with drug-induced akathisia.

    Back to your excellent point: I believe akathisia, once they truly begin to accept and acknowledge its existence that is, ought to be classified in the many differing ways it presents, just like dystonia.

    For example (and of course, this is my non-medical attempt to classify): inner akathisia (with or without motor sensations), inner akathisia with suicidality, agitation, and/or rage and violent features, outer akathisia with purposeful movements, mobility-dependent relief, lower-extremity focused, distractions can mitigate movement and inner pain, etc. Acute; severe; chronic; rapid-onset; mild, intermittent…

    And on it goes. However, one thing remains a constant: it is caused by medications. Period.

    So how do you “classify” akathisia’s subjective presentation when, for some people, it feels as though they get electrical shocks? For some, the need to “jump out of their skins.” Or slow-onset, where at first it causes feelings of mild-to-moderate hyper-anxiety, feeling the need to DO something–anything. For many, it causes a type of “frozen” immobility that leaves them home-bound and unable to interact with others. They even wrap their arms around themselves as if warding off a blow that has yet to come. Others I’ve spoken to are in so much pain, breathing hurts, standing upright hurts, and their concentration? Poof. Gone, because the feelings overwhelm everything else.

    MISSD has a fantastic new video out that shows real people who have filmed themselves as they experience akathisia. One woman–the look on her face–I know it well. Her words, simply, “It hurts. It hurts.”

    So yes, distinction is vital. And the one distinction akathisia has as opposed to other neurological movement disorders is as I wrote above. It is not organic or passed down genetically, like diabetes or dystonia or Parkinson’s. No.

    Akathisia was birthed in laboratories; its creators? The very people who became research medical scientists in order to help humanity. Improve quality of life. Cure diseases. Treat chronic illnesses. I’m pretty sure no one walked into a big pharma lab with the intentions of creating this horrific condition.

    But when they realized they had? What they did NOT do is ultimately how history will judge them.

    And to all who have commented here and written that doctors-in-training ought to be required to take AAPs for 2 weeks, then go cold turkey? BRILLIANT. I agree. I recently asked my doctor if he would prescribe these meds to his own children. He didn’t reply exactly. He sort of demurred, smiled. Then, in my clinical notes he wrote, “She sure seems mad.”

    Gosh, do I?

    Thank you for your comment–and thanks to everyone who has shared and supported this message.

    Peace to you all–

    J.A.

  • This is my story, and reading it… it’s given me so much hope. “Lifestyle medicine”–brilliant.

    The trick? For each person, that medicine “looks” different. It takes an extraordinary amount of time, self-awareness, body-awareness, and personal responsibility–along with a radical commitment to one’s own well-being–to heal yourself from iatrogenesis, and thank you for sharing how you’ve done it, personally.

    For me, playing the piano, every day, singing, running or other forms of working out (when my body allows), and regular behavioral therapy, creating, writing, painting, rest, mindfulness, and more.

    Then there is the cognitive, logical, evidence-based (subjective though it may be) side. Being open to any and all questions about what is, and is not, working, and then open to any and all, possibilities and answers.

    I am currently still in withdrawals from one medication, but took my last dose of the AAP, Latuda, in August of 2016. After 7 months, I developed a cluster of neurological movement disorders. You are familiar with akathisia, I assume. I had that the entire 12-years I was on medications. The “agitated, tx-resistant depression,” oh yes. The weight gain that I cannot, for the LIFE of me, get off, despite my healthy habits.

    But akathisia…

    That has been, to date, the most debilitating of them all for me, and after 14 years, and being told over and over again that NO ONE has ever had such a peculiarly “strong” reaction to these medications… that I am the “Patient A” the “Lucy” of tardive EPS’s…I want to grab every doctor who has said it to me by the collar and say “Does an afternoon on Google frighten you THAT much?”

    The penchant for deferring to authority was bred into me from the moment I knew how to perceive the world as a female, born and raised in the Mormon church. At times, I still struggle with deferring when I should, and rebelling when I most certainly should NOT. If I’m alone with two men in a room, no matter how strong I am, I find myself allowing them to speak over me and agreeing to agree, even when I don’t. It’s a trait I abhor, and yet the game must be played, at times, to get the help I need. It’s a pathological system.

    “Managing expectations” is a common phrase my doctors use with me. I’ve been told to prepare for loss of mobility–with generalized dyskinesia and dystonia. Prepare for walking assistance, they say, and eventually a chair.

    My answer? “Yes, doctors have told me lots of things in the past. So, if I’m going into a chair, I’ll be RUNNING to it, not rolling over because essentially, you keep telling me to give up.”

    I’m placing my bets on my will to survive, thrive, and overcome over their need to be right–and their scramble to have job security. And I believe the survival instinct in my case is more fierce, more powerful, than the “need” for a 6-figure income and their quickly waning relevance in the healthcare system, because mine is literally about survival, not comfort.

    The most insidious thing they did with their willful ignorance was give me medications that caused in me a fatal loss of hope. I can’t tell you how hard that was, and is, at times, to come by. But you know, don’t you? And now, as the world is waking up thanks to you, Bob, me (I hope) and others…

    …hope springs sempiternal, once again, and I thank you for giving your thoughts, time, and energy to helping those of us who are told “it’s YOU, not us.” We know that. But it helps so much to hear it, again, and again, from people like you, who have the courage to lift us all with your truth.

    Again, thank you for this.

    All my best–

    JulieAnn