Antipsychotics…..all different, I found out by experimentation

tiarawithoutsilver 001 I’m not bashing atypical antipsychotics..compared to the alternative mood stabilizers they are cleaner  …..antipsychotics are great.

Don’t get me wrong. I wouldn’t give up my Clozaril for a minute. Even though it requires monthly bloodwork.

But there are ways to take your medicine judiciously and reduce your odds.

This picture was taken back in the day when I was on Geodon, not the right drug for me. It made me more manic. Then, Abilify, which is said to be ‘helpful for depression,’ made me depressed!  I told my doctor and he shhshsed me. Did you know that psychosis is a side effect of discontinuing antipsychotics?

When I finally got off of Abilify, I was hearing voices again.  Mercifully, it was during a hurricane, so it was normal for the shutters to be closed and the house dark. I was psychotic the first three days. That’s a side effect of trying to get off antipsychotics, I found out.

Antipsychotics block D2 (dopamine receptor) and after a while, the D2 receptor, wanting what it’s been deprived of, become increasingly sensitive to even the least little bit. That’s when movement disorder occurs. If I’d just stayed on Seroquel, I think I would have been ok.

The reason I say this is when my shakes showed up, I was on Geodon. I had no idea I’d even been on antipsychotics. In clinic, We went back to Seroquel and my symptoms disappeared….for a year.

Then we put me back on a ‘weight neutral,’ Invega.

The shakes came right back. We went back to Seroquel and they lessened.

You probably aren’t interested in this stuff, but believe me, with tens of millions of Americans don’t even know they are taking relatives of Thorazine. Their likelihood of getting TD, (according to NAMI and MHA)is 30-50% after long term exposure (and these drugs are meant to be taken for life). They are not bad meds, but lower doses and nutrition are just two of the ways people can reduce their risk. But if they don’t even know, like I didn’t, how can they think preventatively?

Got Thrown off a Fb group for this

AlLiliPulPink

 

I’m from North Sand Diego County, Rancho Santa Fe to be exact. Anyway as an alternative radio person I wanted to be Allison Steel but there already was one.  Later I found an old facebook group for people from my elementary school and left this link there. They banned me.

Oh well. Now, I’m using my real last name to advocate for tardive dyskinesia, I ‘came out. I click on other wp links, read and comment as often as I can.

http://ibpf.org/blog/coming-out-after-25-years-bipolar-who-am-i-anyway

More words I thought were the opposite of what they mean…

AlLiliPulPinkAllison Biszantz Aka “Strong”

Here are this weeks words.

 

Prosaic…completely unromantic, commonplace. And here I thought it mean profound or prolific.

Canard…an unfounded rumor or story. (I thought it was French for Duck like you have in the restaurants..well done and crispy please)

Rapprochement: re-establishing harmonious or co operative relations…this probably releated to Brexit and EU response. That’s why I’d never seen it.

Lapidary: this is both a noun and adjective. Adjective…an engraver. Noun, something said that’s elegant, concise, deserves to be written in stone.

 

How about this one??? The innocent are haunted and the haunted are innocent?  Where’s my headstone??? Bipolar Disorder a crowded field. If all I end up being is the poster girl for the grisly side effect of Tardive Dyskinesia and related challenges like Stigma, that’s more than enough for me, thanks for reading.

 

 

“Go Further:” Dad was Ford Dealer, I’m bipolar, with “A Better Idea”

http://www.bphope.com/blog/bipolar-mood-cycles-stop-fighting-and-win/

We’ve come a long way, baby. On the right we have the Ford Explorer. For you millenials, pictured top left was the disastrous contraption called The Ford Pinto.

People howled over Pinto jokes for years but it wasn’t funny. The placement of the engine, in the rear, beneath the trunk or flip top back was terrible if you got rear ended. Dad survived the 70’s Oil Embargo and supported his brood of four daughters during a very rough time. Pinto and all.

I admit, I was spoiled. I certainly was certainly unprepared for the shocker of Bipolar Disorder, that’s for sure.

And I have a whole new way of dealing with mood cycles and other downers that come up in life. You could say I’m “Going Further.”

http://www.bphope.com/blog/bipolar-mood-cycles-stop-fighting-and-win/

2 trusted shrink/internist of 17 years re chronic pain, bipolar, side effects, Stanford Tardive & Ali

 

DSC01512DSC01510

Thanks to former BFF outta cash and cut outta the will. Dad can’t understand stuff like how  25 years psych meds and side effects, meds for the side effects for the side effects etc. It really DOES happen and according to him, it’s all my fault.  She didn’t understand either, thought the salads for the prediabetic condition side effect and my compulsive carrying of back issues of the new York times to read in waiting rooms was ‘crazy.’ as she built her case about me in silence, totally two faced, she caused more harm than she’ll ever know. She relayed she thought her friendship was a ‘gift’ to me. It was. It keeps on giving, too. I’m still picking up the pieces!!!!!!!!

w/Stanford Volleyball and exercise bulimia the combination of tardive dyskinesia and my annular tear, three herniated discs, spinal stenosis and psoriatic arthritis…well most people would have offed themselves by now.

Dear Reader. If you’re still here the following is actually interesting reading.

And if I may say so myself, I’m published in the local tribune outlet, Meloday maker UK, Hits mag, The Album Network, Arizona Republic, Bipolar Magazine, NAMI and International Bipolar Disorder Foundation (IBPF) in San Diego, the city I grew up in. I am working on a piece on tardive dyskinesia, also called “Extrapyramidal symptoms” for Neurology today for their next issue. My current publisher reached our with both hands; requesting a movement disorder piece when their sole source of income is from a drug company. Tardive is rarer than ever but still, mighty white of them.

This is pursuant to the crisis caused by former bff  projecting her 3 attempts going on a fourth suicidality on me, calling the cops and my father about my deteriorating state. He’s tried his best to help me financially in every way possible but….not have anything to do with the family. He just can’t figure out, understand how someone can possibly have so many problems. But then he’s never been on an MAOI or Clozaril or an antipsychotic causing tardive dyskinesia and a spiral of unending spasms and pain.

First order of business to take care of myself. Because of certain choices, side xfx,  not all my fault. I’m not a bad person. Dad thinks so. I can’t afford to think that way. I make bad choices and things get worse! Physical, ongoing mental health still paramount. Pain, bowel still problematic. Still needing 290 mg (top) Linzess and once weekly emergency injections of Relistor, an 80.00 copayment even within catastrophic period. I’m still looking for a healthier way. 16.00 copay to see original pain specialist of three years, still picking people’s brains. Followed through w/appt.  Saw a new, likely temporary pain doc (anti narc) studying to be an All Cash “Functional” (read: Holistic)  Medicine”specialist. For a less toxic, least constipating solution, she wrote 7.5 Microgram Butrans patch, still a narc. She gets it. Copy Enclosed.  Of course I didn’t fill it. I was just picking her brain for free, like I did when I first got Tardive Dyskinesia and  saw 15 doctors who weren’t able to treat me and couldn’t admit it. They said ‘psychsomatic’ (Cleveland clinic female doc) were sexist, stigmatizing and didn’t want anything to do with me.. afraid I’d sue them which I never would. I just want to get well.

Still journaling the box, diet and exercise changes, trying to make it work. I’m in more pain but that’s not THE most pressing I hurt too much to exercise the way I used to– partially a good thing. Spine mindfulness, so to speak.  Gentle walks, stretching and at home mat pilates swimming for now. Discontinuing Y membership and beloved NYT. 100.00 Savings. First Haircut in a year. Thanks, Clair. I don’t think you meant well. I think you need help for your brain tumor, beneign as it may be, it’s interfering with your decision making process. I feel for ya. I don’t feel so well myself. But we’re not good for each other and never will be.

Don’s Book, “Blood Orange” just arrived!!!!

blood orange

I finally bought a book off of Opinionated Man’s “A Good Book Is Hard to Find” and have my eye on another by the same author. It just came in the mail. Yeahhhh

I’m intimidated by the technical process of self publishing. Formatting. How much that costs. That kind of stuff.

I didn’t realize this but Don Massenzio also wrote a book on self publishing!  That’s the one I’m going to buy next.

The book is in my head like it happened yesterday. Magazines and organizations who get money from big pharma, not that I’m against the drug companies, they are uncomfortable with topic of side effect of tardive dyskinesia, also called ‘movement disorder.’  I don’t blame them. It’s a hideous topic and keeps many from seeking necessary treatment.

I know I have to stand on my own with this one. There’s only one bipolar disorder foundation who might be willing to promote a book like this. It doesn’t matter. I have to write it. The people will find me.

Days b4 my next refill of Tardive Meds, Silverscript is denying coverage

As many of you know, I have a neurological side effect from the antipsychotics that I’ve been taking all these sixteen years. It’s like severe Parkinson’s.

I take meds for it. Expensive meds.

Silverscript, my medicare part D, has suddenly cut me off, just days before my next refill. Previously, back in January they said I was covered until next Feb in 2017. Legally, you guys, can they do this?

 

The Nami statistics are thus: For those of us who take an antipsychotic, whether it’s a traditional old school Haldol or Thorazine or an ‘atypical’ like Invega, Geodon or Abilify,  for a decade, they say that percentage of us who will get tardive dyskinesia is 30-60%. And that type of drug is not taken temporarily. Its a drug they give you and tell you you’ll be needing it for the rest of your life. So we’ll all be taking these meds for a decade unless we try to go without them, find out that we can, and get off of them. For me, it’s too late.

It’s also referred to as Parkinsonianism. There is no cure, only expensive symptom management.

I’m on a critical medication for this.  My Part D, Silverscript, who is owned by the wonderful folks at CVS  (wouldn’t that be a monopoly a pharmacy chain owning part D Medicare benefits?) who had approved me thru Feb of next year. Sent me a notice, …..ten days before my next refill that they are cutting me off. I have no time to react.

We have a piece of paper saying that I’m covered through Feb of next year, so how can they cut me off at the last minute? Ideas anyone?  Has anyone done an individual appeal process? The doctor says on their end, they are out of options, have appealed this decision twice. Now I hear about it.

Will they still give me my meds while we are appealing this? Is this even legal?