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?

We’re all hoping Medicare Privatization happen but it’s Trump, Sessions’ and Ryan’s ‘go to!’

Privatization is the only speedy way to repeal the ACA, clean up the VA so it’s not such an eyesore, maintain nursing homes, provide health insurance…hell we even pay private correctional companies to run our jails.  We also pay private companies to administer subpar healthcare to prisoners.

In Florida a sixteen million dollar price scheme was discovered by a Senator Richardson, who took the time to go investigate all the ‘contract prison’ locations. He asked, as is his right, to inspect receipts for services provided (and billed for) “The exorbitant prices just jumped off the page at me!” He said. Privatizing prisons has been determined a failed experiment. Our justice system has decided to phase it out slowly by not renewing contracts as they come up.

We’re tired of hearing reports of prisoners dying needlessly in transport vans, wearing shackles, not given food, water or their prescribed meds.

Amateur mistakes like people being 100% cut off medicine like Xanax or antipsychotics. in privatizated prison, there’s 10x more ‘lockdown’ a sharp increase in contraband and unprecedented and recorded extreme use of force.

Who are these employees at the privatized prisons? They obviously aren’t trained, they make less money than government or state correctional institutions pay, the savings they promised aren’t there.  Whatever value they claimed to give us has been WORTHLESS.

More on privatization and health: In nursing homes, agitated patients are overmedicated with the very medications that carry an unacceptably high risk for heart attack and stroke, especially in females over 65. They don’t make their own healthcare decisions and the nursing homes can save on the cost of hiring extra workers to supervise, rather than oversedate our most vulnerable citizens.

Private hospitals….well, take the case of the now defunct Hollywood Pavilion. Oh how I hated Michele, the lady who ran the place. 100 mil Medicare fraud. More Medicare fraud has been reported from private hospitals than public ones.

And we’re going to watch Trump privatize healthcare? Puhleeze.

By the time Trump has egg on his face, he’ll be off in Dubai, doing that ‘deal’ he turned down a few weeks prior.

Why do I blog? I mean, really????

alblackdressmall

 

I used to be in radio, which is a commercial business that carefully calculates who they are trying to reach, how old they are, race, level of education, income, etc. My format, alternative, was aimed at 18-34 year olds, 60-40 men, mostly and women. At the time, I was in my thirties (I did this from 29-39). I knew as an employee, I’d age out sooner than later. When the ad department sells that Saturday Afternoon live remote from the car dealership, they don’t want to send out a 55 year old woman, I mean, not really.

 

The reason I bring this up in the overall discussion of why I do what I do… is I rarely blog and am even guiltier of not reading and responding to others. I hardly ever go on facebook. Twitter? Can’t be bothered, yet this is the best place to ‘reach out and touch’ someone.

 

Basically, I am looking to collaborate on an intellectual level with writers, bipolar so much the better. I’m in that phase of writing articles for magazines and the local newspapers (Miami Herald, South Florida Sun Sentinel, Bipolar Hope, etc.,) and try to figure out which books to write and which topics to include.

 

I can’t figure out if tardive dyskinesia belongs in a separate book all its’ own. What do you think?

I can’t get anyone to tell me how many of us there are.

The info I’ve dug up is of practical information to those of us who take the drugs that cause them…..those atypical antipsychotics advertised as ‘helpful for depression’ that list warnings for antidepressants so the consumer doesn’t realize they are being prescribed a cousin of Thorazine, a drug that helped a ton of people in the 52’s and emptied mental institutions. Those people could now live their lives on the outside.

The info on movement disorders caused by Reglan and antipsychotics that I can’t seem to dig up is even more interesting.

Many neuros in the field say they’ll answer questions and then blow me off.

I know why this is and want to write about it. It’s not damnning, but it’s practical knowledge we are deprived of.

I lost my grant for tardive medicine this year. It’s changed my perspective. To put it lightly.

I am just looking for feedback. But it seems like a crowded field out here. Especially when you get to the point that you are writing for all these publications demanding copy guaranteed to print….it’s hard to come back and blog, sorta.

Looking for other tardive patients for a movement disorder project…a free online pamphlet filled with facts.

gainesvilletwoWe went to Gainesville to see my neurologist, the one who finally fixed the tardive dyskinesia, a side effect of antipsychotics.

 

I’m going after a huge undertaking, writing a book of my journey with tardive, the docs I saw (you would not believe some of the stories) the ER visits, the 8 mo disastrous titration off Seroquel that only made my symptoms explode (withdrawal emergent syndrome) and the whole lot of it.

How many people have this anyway? Who would know? I am lining up my sources and looking for input. What questions are answerable? Should I ask for a quote?  I’m just trying to do the right thing and prevent others from living the same three year marathon nightmare that I did. If you know anyone who is twitching, grimacing or thrashing, send ’em my way. bipolarbrainiacSFL@Hotmail.com

 

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Picture from Gainesville with fill light from the Lake behind me! Looking for other tardive patients

gainesvilletwoWe went to Gainesville to see my neurologist, the one who finally fixed the tardive dyskinesia, a side effect of antipsychotics.

 

I got it from Geodon. I’m trying to find out if there are any other people in my situation. If you know any, can you send them my way? I’m working on a project where I tell people what their chances are, tips on prevention, treatment and current medical thought. Having had it since 2007 and searching for symptom relief (I couldn’t drive or sign a check or fall asleep for three year…a total nightmare) It’s a lot like people who get bipolar disorder and have a three year period during which they tried everything. This is a good photo because there was a lake across the way, right below me and the light came from below, filling in my roadmap of a face!!!  In Hollywood I think that’s called a “Kleig Light” or something like that. We shot pictures forever. It was so fun.

The youtube links to Tardive, can anyone reblog these?

 

 

People affected with tardive dyskinesia don’t circulate socially much. They’re often disfigured by the involuntary spasms, movements or in Dystonic cases, they are frozen in a contorted way.

rebels (2)I fought hard for three years to find relief for my symptoms so I could sign my own name, sleep at night and drive a car again. I went to so many doctors you would not believe it!!!!!!!!!!!!!!!!!  I’m wanting to write a short book on it because I learned a lot about treatment, how to get it and what to look for. A lot of the info is in vlog 1 and 2 and I’m just asking people to reblog them in hopes of reaching more people. The 300 folks I’ve reached on IBPF’s site so far had told me some incredible, hard to believe freaky stuff. My vlogs are NOT alarmist or antimedicine…they are just helpful and low key. I did two sets, one of the sets was later in the afternoon after waking up and I was more animated. Here they are. Maybe they’ll brighten up someone’s day.

Tardive Vlogs Utube

Part 1: https://www.youtube.com/watch?v=nCOR_YVo-ks

Part 2: https://www.youtube.com/watch?v=TqfEX8jl-Zs

Writing a Book, technically speaking..what does it take?

allicat

 

It just occurred to me that my greatest resource is right here on WP. I had an experience (well, actually I’ve had many) that I need to write about so that it doesn’t happen to other people who are on the medication that causes it. According to NAMI, 30-50% of people on ANY type of antipsychotic, be it first or second generation, if they take it for over a decade, they have a 30-50% chance of getting a permanent neurological disorder that’s called “Tardive Dyskinesia.” Nice. I know. It happened. And I was the ‘hot potato’ that no one wanted to help…or have anywhere near.

 

The whole damned thing is not attractive but I learned a ton of stuff in the three years I searched the world for symptom control.

There’s a hell of a lot more things you can do to lower your odds than to simply not take the medicine. But that’s why I want to write the book. I made a couple videos for IBPF (international bipolar disorder foundation) and they need a wider audience. People who are concerned or worried or who have the problem will find me, believe me. I just need to get the book out there. I’m fine with self publishing. I’m fine with offering a free downloadable product too but don’t know if I can afford to do it that way. I just read today that a badly ‘formatted’ book hurts sales. I don’t even know about what this ‘formattting’ stuff is. Who does? Are there people out there who (unlike Authorhouse and other self publishing firms) can guide you through Amazon “Create Space?” If there are, please, let yourselves be known. Once I get the first one done, I have many more books in me. I finally broke down and told my husband I need him on ‘my team,’ as he’s really technologically intelligent.

Recently I visited the Youtube channel where my videos is and saw it had gotten 300 views. Of the twenty comments, 80% of them had been on the same atypical antipsychotic as I had been. There’s something there, believe me.

Just letting you know if you know anyone who has a movement disorder

International Bipolar Disorder Foundation allowed me to make some informational videos on the topic of Tardive Dyskinesia and from my three year search for sym

This is the Day I’ve been Waiting for…all of my life.

Today I was approved for a grant for expensive, Brand New, Tardive Dyskinesia Medicine. Whew!!! Then, my Video Blogs were posted on my publisher’s site, IBPF, International Bipolar Disorder Foundation.

Here is a link to part one. It’s a two part series on a very common, horrible side effect (Parkinson’s like it makes me understand Why Robin Williams pulled the plug. Involuntary thrashing tremors, etc-wait, I’m spoiling the fun. If you want to take a quick peak on a mental health advocacy Vlog and what it looks like to Vlog in general, here it is.  I’m so brand new at all this, let me know at least if they are live. This syndrome side effect of Atypical Antipsychotic drugs like Abilify, Geodon, Latuda, Saphris, Invega, many of whom market themselves as antidepressants or helpful for bipolar depression, meanwhile the public doesn’t realize that they are on such a heavy duty drug!! I really wanted to get the word out, because it happened to me and it’s really common. People don’t know.

Blog: http://www.ibpf.org/blog/move-over-movement-disorder

Part 1: https://www.youtube.com/watch?v=nCOR_YVo-ks

Part 2: https://www.youtube.com/watch?v=TqfEX8jl-Zs

ptom control….I know quite a bit about finding treatment. It’s like a needle in the haystack.

This is the Day I’ve Been Waiting For

Today I was approved for a grant for expensive, Brand New, Tardive Dyskinesia Medicine. Whew!!! Then, my Video Blogs were posted on my publisher’s site, IBPF, International Bipolar Disorder Foundation.

Here is a link to part one. It’s a two part series on a very common, horrible side effect (Parkinson’s like it makes me understand Why Robin Williams pulled the plug. Involuntary thrashing tremors, etc-wait, I’m spoiling the fun. If you want to take a quick peak on a mental health advocacy Vlog and what it looks like to Vlog in general, here it is.  I’m so brand new at all this, let me know at least if they are live. This syndrome side effect of Atypical Antipsychotic drugs like Abilify, Geodon, Latuda, Saphris, Invega, many of whom market themselves as antidepressants or helpful for bipolar depression, meanwhile the public doesn’t realize that they are on such a heavy duty drug!! I really wanted to get the word out, because it happened to me and it’s really common. People don’t know.

Blog: http://www.ibpf.org/blog/move-over-movement-disorder

Part 1: https://www.youtube.com/watch?v=nCOR_YVo-ks

Part 2: https://www.youtube.com/watch?v=TqfEX8jl-Zs

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