Speaking re Tardive Dyskinesia at American Psychiatric Association Conference NYC

 

Hi. I’m Allison Strong. I am speaking on my incendiary, suppressed, most combustible topic, Tardive Dyskinesia, at the APA in New York City. Oh, I already said that, right? I used to be a tireless self promoter, now I’m in my fifties would rather lazily bingewatch Lifetime’s “Mary Kills People” (ER doc by day, Euthanasia Doc by night)…the Canadian version of “Good Behavior,” sort of. Or play ‘hairties’ with my kats, Jazzykat, the black one, and Whitekat, the white one. Whitekat is a little scardiekat, but she likes to jump in the air and catch the hairties like a wide receiver on a football team. So now, you know I’m all about kats. Always have been a horse person and a Kat person.

 

If you’re going to APA, look me up at the Marriot.

‘Prozac Poopout’ and Tardive Dyskinesia

 

If you’d have told me when I was diagnosed, in 1989, with bipolar disorder and put on Tegretol and Prozac, that my Prozac would mysteriously ‘poop out’ on me and drive me to psychotic depression, I’d have told you that you didn’t know me very well. I was too smart to let that happen.

If you’d told me I’d end up on antipsychotic medicine marketed and packaged sans the scary sounding word ‘antipsychotic;’ later developing Tardive Dyskinesia, I’d ask you what you were smoking.

Well, all these things did happen and the six years of navigating a series of numbskull neurologists who couldn’t (or wouldn’t) diagnose me, while class action lawsuits against Geodon ruled my search result box, was not a high note in my life. I barely survived the indifference and the sleepless nights, which for a bipolar like me, are a threat to mental stability.

 

For the first year I went without a diagnosis because no one was willing to ‘step in it,’….but eventually, I got a diagnosis and a dire prognosis from the top guy in town. “You’re Hopeless,” he said. “You need to learn to ‘suck it up.'”

Yeah, and it got worse before it got better. My six year search for information and a doctor with the skill set to help me taught me more than I ever wanted to know about an ever faster moving FDA, sweeping changes in clinical research that lend a whole new meaning to the words ‘private,’ and ‘for profit’….things any consumer of our healthcare system should know before making decisions about what medicines they want to take. I wish I’d known then what I know now.

 

But then, I wouldn’t have anything to tell you…because TD would never have happened to me. Not all atypicals are alike with regards to their side effects…and comparative, head-to-head research of antipsychotics and atypical antipsychotics are all available online, hiding in plain sight.

It’s just a question of knowing where to look.

It’s hard reliving it, as I try to slog through the writing of my book, “All shook Up from my Sedatives: A Tardive Dyskinesiac Talks Back,” and yet I soldier on, because someone has to speak up for us. Our population has tripled in the last five years; reflecting an explosion in the prescription of the antipsychotics that cause it.

Antipsychotics are not just medicines for ‘crazy’ people anymore. Antipsychotics are being used for aids, adhd, autism, dementia-related agitation, and I haven’t even gotten through with the ‘A’s yet.

 

‘Prozac Poopout’ and Tardive Dyskinesia

 

If you’d have told me when I was diagnosed, in 1989, with bipolar disorder and put on Tegretol and Prozac, that my Prozac would mysteriously ‘poop out’ on me and drive me to psychotic depression, I’d have told you that you didn’t know me very well. I was too smart to let that happen.

If you’d told me I’d end up on antipsychotic medicine marketed and packaged sans the scary sounding word ‘antipsychotic;’ later developing Tardive Dyskinesia, I’d ask you what you were smoking.

Well, all these things did happen and the six years of navigating a series of numbskull neurologists who couldn’t (or wouldn’t) diagnose me, while class action lawsuits against Geodon ruled my search result box, was not a high note in my life. I barely survived the indifference and the sleepless nights, which for a bipolar like me, are a threat to mental stability.

 

For the first year I went without a diagnosis because no one was willing to ‘step in it,’….but eventually, I got a diagnosis and a dire prognosis from the top guy in town. “You’re Hopeless,” he said. “You need to learn to ‘suck it up.'”

Yeah, and it got worse before it got better. My six year search for information and a doctor with the skill set to help me taught me more than I ever wanted to know about an ever faster moving FDA, sweeping changes in clinical research that lend a whole new meaning to the words ‘private,’ and ‘for profit’….things any consumer of our healthcare system should know before making decisions about what medicines they want to take. I wish I’d known then what I know now.

 

But then, I wouldn’t have anything to tell you…because TD would never have happened to me. Not all atypicals are alike with regards to their side effects…and comparative, head-to-head research of antipsychotics and atypical antipsychotics are all available online, hiding in plain sight.

It’s just a question of knowing where to look.

It’s hard reliving it, as I try to slog through the writing of my book, “All shook Up from my Sedatives: A Tardive Dyskinesiac Talks Back,” and yet I soldier on, because someone has to speak up for us. Our population has tripled in the last five years; reflecting an explosion in the prescription of the antipsychotics that cause it.

Antipsychotics are not just medicines for ‘crazy’ people anymore. Antipsychotics are being used for aids, adhd, autism, dementia-related agitation, and I haven’t even gotten through with the ‘A’s yet.

 

Opiod Epidemic-It’s not just about the Drugs

I have chronic pain and am no longer on opiods. (Safer, off-label, organic alternatives abound). I was on them off and on for years as a result of sports injuries from exercise bulimia. I loved high impact sports like running, tennis and professional beach volleyball.

I paid for my excesses. With interest.

In terms of the opiod epidemic, why not me? I have bipolar disorder and am the most addictive person I know. Somehow, I didn’t fall down the rabbit hole.

For me, Opiates were simply a means to a pain free life.

The side effects eventually made me uncomfortable enough to quit, which I did  alone in my home; assisted by a muscle relaxer.

Today I put up with more pain, but that’s ok with me.

I just worry about other people who are in even more pain than I am whose access will be cut due to this ‘epidemic’ fueled by criminals and addicts looking for a high.

When I say it’s not just about the drugs, I mean this: In the United States, a semi-synthetic opiate is being developed for use as an antidepressant.

What we need is a non addictive pain medicine for those of us who are legitimate pain patients. Why isn’t there one?

Going to see former Steely Frontman, Donald Fagen

Total Prince of Pathos….

“At night you hide from the madman you’re longing to be. But it all comes out on the inside, eventually” (Here at the Western World)

“Thelonius My Old Friend, Come on IN and let me shake your hand. So glad that you’re here again, for one last time, Let your MADNESS run with MINE”

Tuesday night, the 8th, at the Fillmore, Miami Beach. I have loved this band and Donald Fagen’s solo work for over twenty years. The appeal of their pathos never fades away. So now, I’m going to acquaint myself with his newer work. He has a new album out…something ‘condominiums’ I think it’s ‘Sunken Condominiums’ I’ll find out.

It’s taken me a week to get over the whole business about being dragged off an airline because tardive dyskinesia makes me walk a little bit ‘off.’  I managed to write some stories and crack a new publication, get picked up by the daily and possibly ‘The Blog’ at Huffington Post. We’ll see.

I kept waking up feeling like I’d just gotten a DUI and remembering ‘oh, that crap happened to me. what does it mean?’ You know that pit of fear in your stomach feeling?

Going to see former Steely Frontman, Donald Fagen

Total Prince of Pathos….

“At night you hide from the madman you’re longing to be. But it all comes out on the inside, eventually” (Here at the Western World)

“Thelonius My Old Friend, Come on IN and let me shake your hand. So glad that you’re here again, for one last time, Let your MADNESS run with MINE”

Tuesday night, the 8th, at the Fillmore, Miami Beach. I have loved this band and Donald Fagen’s solo work for over twenty years. The appeal of their pathos never fades away. So now, I’m going to acquaint myself with his newer work. He has a new album out…something ‘condominiums’ I think it’s ‘Sunken Condominiums’ I’ll find out.

Punk Rock ‘Three Chords and The Truth?’

I heard about an artist, Colleen Green, who says her work is ‘Ramonesque’…i.e., The Ramones. I find stuff like this in the New York Times on the stairmaster at the Y.

Last week, on Sirius’ ‘Guns and Roses Channel,’ I heard all kinds of good stuff that I want to purchase and record. Also heard really good stuff on Jonathan L’s “The Lopsided World of L” Mersey Radio, Liverpool, England.

Jonathan is a former employer of mine at Radio station KFMA and ‘The Q’ both Phoenix, Arizona. You gotta know when someone hires you twice, you have worth in their eyes. This has nothing to do with Bipolar Disorder or Tardive Dyskinesia….it’s what I do to get out of depressive phases, like the one I’m in right now.

Why I’ve been Dark…..

 

The topic I wrestle (or wrestle) with the most is Tardive Dyskinesia, a side effect of antipsychotics. It’s gaining traction on Television with “The Good Wife’s” Michael J Fox’s character, Louis Canning, who has TV, or the ‘patient/perp’ storylines on “Law and Order.” TD comes up there in a clarion call crying out that for the mentally ill in the criminal justice system, justice can never be served. Well, it can get dicey out here on the outside of penal institutions as well.  It’s just that no one wants to hear about it just yet.

 

Mentally healthy people get prescriptions for Antipsychotics. In 2015, 60 million RX’s for antipsychotics were written, (according to QuintilesIMS, a global tech and data solutions provider for the healthcare industry.

These drugs are helping, it seems, everything under the sun, from anorexia to insomnia, OCD and anxiety. Who doesn’t want to feel better, right? I take one myself.

 

They are sooo glowingly ‘madvertised’ on TV with enervating names that suggest Results (Rexulti) The World is Your Oyster (Geodon) Able again, (Abilify)….and that’s fine. These are good drugs and certainly an improvement over the mood stabilizers that ruined people’s kidneys. The thing is…they work so fast and so fully we forget to check the flip side. And there always is one.

 

If you are having uncontrollable movements and think you might be on one of these drugs….there’s finally an FDA-approved treatment for our 55 plus year old, long neglected syndrome, Tardive Dyskinesia. Another one, a second, (when it rains it pours) is supposed to be FDA-approved (or not) on August 30th.

I’m going to try one.

If YOU think you need a TD specialist, as opposed to a TD ‘Denier’ to check you out (and there are TD ‘Deniers’ out there, sad to say), here is a state-by-state link.

 

Hopefully, it will help you out. And yeah, I’m still bipolar…pulled out of my last ditch in March. I think DBT skills really helped. More on that later.  It’s good to be back.

http://www.lifescript.com/doctor-directory/condition/n-neuroleptic-induced-tardive-dyskinesia.aspx

 

 

I’m the Worst Blogger in the World and Now, I need Help

I’m Allison and Have Bipolar Disorder, Chronic Pain, Tardive Dyskinesia and possibly Sjogren’s syndrome. (I find out today on the Sjogren’s…genetically, it makes perfect sense).

I’m in bipolar depression relapse, which is awful. I had a great 2 1/2 years of remission.

Over the course of the last 17 years I’ve had perpetual, off and on med burnout, which has a very geeky name, Antidepressant Therapy Tachyphylaxis, which means the antidepressants just stop working. I think a lot of people have this problem but there’s a black void where knowledge should be.

Articles on it, and other names for it, like “Prozac Poopout” are all over the internet. In the past we’ve resolved it over time by cycling to newer meds. Pristiq, then Viibryd and finally Brintellix, (now called Trintellix) and then Fetzima, which didn’t work.

Two different times we used Trintellix, which worked for a few years, and needed to be discontinued and then worked again when we ‘recycled it.’

I’m worried. I think I’ve burnt out all the drugs that act on Dopamine, Serotonin, Norepinephrine and need to go to a different class like a tricyclic or MAOI. The fact that I have Tardive Dyskinesia reduces our treatment options greatly.

I think it might eliminate an MAOI, because monoamines factor into TD…in some way.

I’m just really scared.