‘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.

 

Extremists on the Opiate Epidemic

 

I agree, other than the catastrophic wave of crack cocaine and all its’ collateral damage, this ‘epidemic’ is the likes of which I’ve never seen. I don’t even understand it. Last week, in the New York Times, one of the letters to the editor called for a complete 90-day suspension of ALL prescription of opiods to outpatients. This would limit pain relief to patients in the hospital.

Something this extreme would likely never happen, because the drug lobbies are too powerful. However, it’s scary anyone is even contemplating it!

I’ve had chronic low back pain since 2004. I’ve tried 3 types of physical therapy, chiropractic, acupuncture 2x, and 10 different ‘interventional’ pain therapy injections.

Expensive and ineffective.

The last ‘test,’ which was for Coolief, worked and gave me 40 hours of 100% pain relief, but Medicare doesn’t cover it. I’m no longer on opiates, thanks to safer alternatives with less side effects.

However, if they want to put a dent in this epidemic, Medicare and insurance need to cover the denervation procedures that work, otherwise all this talk is nothing but scare tactics and hot air.

Me, Speaking on Tardive in San Diego at American Psychiatric Association

Oh, my god. That’s the side of my face I can’t stand. Not only that, I was carrying 20 lb of what my friend D calls ‘seroquel spiderbelly.’ So I kept it black and basic.

Just the story. Just the facts. And you know what? I cried a little on stage….or tried NOT to cry, but someone has to have compassion for me. And for the rest of us out there. We need a Tardive Dyskinesia national advocacy group.

Guess who is thinking about starting one? I am on disability insurance, can’t earn money, and am tired of seeing my name in print.

So, this cause, as dreary as it is, deserves someone to reassure others they are not alone and they can get better, even if their doctor is telling them to  ‘learn to live with it.’

Everyone always says it would be so much better for us if we had a ‘single payer’ system. But I’m here to tell you, if you have a difficult problem…if you live in a country like England, you could never see a total of 9 neurologists over the course of 5 years. So….I’m grateful for Medicare and Disability, I guess.

I just read another study, this one in Britain, based on 900 studies. They estimate the risk rate….this is called ‘incidence rate’ at 20% in a patient’s first year, and then add 3% more for every year of antipsychotic use. And not all atypical antipsychotics are created equal, either. Some are way more causal than others.

I’m not saying these are bad drugs, but do we all need them?

I believe I could have handled my bipolar disorder without them. Just good mood stabilizers. That’s it. Next Stop?

New Orleans, and my husband is coming with me. And I’m going to speak.

Deplaned for ‘whatever’ reason story got picked up Psych Central

 

I wonder if this link is live. I wonder if I am alive. Today I worked tons of hours on my book. Then, by accident, I stumbled upon someone listed in someone else’s book that I was looking for. It has to do with this organization, similar to “Dr’s Without Borders,” but the hinterlands these Americans go into are the Appalachians.  They provide free medical to the people who can’t afford it, which is pretty much everyone. I just hope they don’t get detained at the airport. The way it’s going, it could happen to anyone, anytime.

https://psychcentral.com/blog/archives/2017/08/13/bipolar-woman-targeted-flagged-dragged-and-deplaned/

 

 

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.

The Time is at Hand for a Agent/ Publishers search.

Writers…this is not a promo or commercial for my book. It’s writer’s musings while writing first draft.

 

All I want is for my story and the ballpark but the consistent consensus of my 10-neurologist ‘brain trust’ on answers to things like ‘What are my chances of getting this?’ to get out there.

I didn’t want to put pressure on myself by going after an agent/publisher before the first or second draft of my book  was written w/bibliography and footnotes.

I didn’t graduate from Stanford and sure didn’t major in English Lit which would have helped. I did, however, take a boatload of journalism classes and still have the notes.

From research I learned Tardive Dyskinesia is not only a side effect of antipsychotics but EVEN antidepressants, ADHD meds, Lithium, Depakote too! All these meds are good, solid meds..I’m not demonizing them. That’s been done to death.

Just like the opiate epidemic, it’s not really about the drugs…..it’s the suppression and lack of knowledge.  Just like the opiate war, it’s not a battle to be won overnight.

This is the first book on this side effect. It is or will become an important general health issue.

Tardive Dyskinesia ‘prevalence’ doubled in the space of three years. 500-700,000. No longer an ‘Orphan’ disease.

I didn’t exactly know the content and flow until I started working on my bibliography., (Which presently is 20 pages long).

What I have now is a halfway done first draft, footnotes and 3/4 done MLA bibliography with another new thing I learned ‘Department of Index’ (DOI) links.

.But the book still feels like ‘All Talk.’ I want it to be ‘for real,’ a deal sealed w/academic or indie press. I truly don’t want to self publish a shoddy book. I’m in over my head. I will if I have to……but gosh….I could just put it on my blog like I’m doing now.

I wish for a paperback to be available so people can hold it in their hands and see they are not alone.

I see the support I need to perfect things like formatting, developmental editing, punctuation and form of my bibliography, (which includes books, websites, dates of retrieval and press releases)… cover design, legal vetting, promotion and distribution….yada yada.

I know I need a partner.  Let other people help me out of their own self interest.  Either a pharmaceutical company pamphlet or a renegade book published by an indie or academic press. Royalties go to a 501C.

There are many people who would like the world to be better educated on the permanent side effect of Tardive Dyskinesia, a  61-year-old syndrome that’s been bullied into the broom closet because it’s scary to think about, affects patient compliance and overall, very bad for the lucrative antipsychotic business.

 

Why I’ve been Dark…..

Yeah, I’m writing a book on my favorite topic, a cause so crying out for coverage I can’t stand it. It’s inflammatory, political. Side effect not sickness. Something (a product) causes it. Or supposedly does. (I’m open to other theories. You know how quickly medicine changes).

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.

 

 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

 

 

Are you at risk of Tardive Dyskinesia? Find out now.

You know that rapidly rattled off disclaimer “Call your doctor if you experience involuntary repetitive movements as these are serious and may become permanent.”

No shit, Sherlock. This International Bipolar Disorder Story has some of the stuff the doctors won’t tell us. The TD causing meds developed for schizophrenia are now being used for mainstream, run of the mill, non mental ill concerns such as anxiety, adhd, insomnia, cancer and anorexia (stimulate appetite) depression, and bipolar disorder, so you might be on one of the drugs that’s whitewashed as something else and be at risk. The drug companies don’t exactly advertise they’re selling reformulated Thorazine. Antipsychotics.

Be safe. Be sure.

http://ibpf.org/blog/tardive-dyskinesia-decade-later

Allison