Scary Tardive Types on the Internet-Damaged Goods: Do not Wear!

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Beware, Be careful, if you do a search for tardive dyskinesia, there’s a ton of disinformation and misinformation.

I’m writing a centrist book on it…cause, risk factors, studies, promising new treatments,..how to get symptom management w/o wasting your time with self-claimed Tardive Specialists who don’t have a CLUE…I went through a lot and don’t want anyone else to. In fact, if it weren’t for all those doctors who said, “It’s psychosomatic,” or ‘You’ll Never Get Better, Suck it Up’ or…’You shouldn’t take the Valium,you might get hooked” or simply, ‘I have nothing to offer you,’ the book might never have been written.

I learned so much. Our numbers have doubled since I began my research two years ago. It’s still pretty rare though. That doesn’t mean our suffering is any less. you can’t measure misery. Don’t even try.

And as for finding and trying to talk with other patients,…there are some very damaged people. They are angry. Rageful.

Some of them have no symptom relief…their lives are decimated. They want to get even. With the world.

In the following case, I took a few blows to the skull before removing myself from the situation.

There is this one guy who is doing a facebook page based completely on his lawsuit.

He’s suing AstraZeneca (Seroquel), asking for punitive damages of 129 million. And that’s just for him. One person.

He thinks Seroquel is poison.

He’d managed to attract a famous lawyer.

The lawyer bailed.

Now I know why.

This guy called me a “Troll.” I’d never heard that term so I asked him what he meant.

He said he wasn’t feeling well that day. I tried to forget and move on.

Then, he gave me all his personal info, asked me to read every single post on his ‘tardive dyskinesia lawsuit’ facebook page and then write articles on and about him and his lawsuit…I write for three bipolar related publications. He  suggested others like…Reader’s Digest, WEB MD, I mean, I felt we were on the same team!

The next day I message him and He says… “PLZ LVE ME ALNE U NEED INPATNET PSYCH. U R THE TYPE of PERSN WHO NEEDS SEROQUEL” (This from a guy who thinks Seroquel is the devil).

He went on to say I was psychotic.

I do get hypomanic and type really fast. This is daunting to some. I’m working on it. Swear.

It hurt to have someone flip on me like this.

I was stunned, a stone where my stomach used to be. I knew I had to block, unfriend, the whole bit.

Husband says…Hon, it’s just the internet. There’s tons of crazy people out there.

Is it really like that? I swear, because he had tardive, I felt this bond…I’m a little on the lonely side to begin with…and then this.

It’s best that I discovered his true colors before attempting to write an article about him, that’s for sure!

Sometimes bad breaks are for the good.

Muhammad Ali, “The Greatest,” Movement Disorder and All

aliinactionali

I was wowed to see the special, separate “Ali” section in the New York Times. There are so many parallels between him and I. The most obvious being I have Parkinsonianism from Tardive Dyskinesia.

NOT TO BE ALARMIST BUT…if you take psych meds you should be aware that…

Tardive Dyskinesia is a “movement disorder” a side effect of some GI drugs and antipsychotics. Even atypicals.

It would seem the older ones, the Haldols, Thorazines and such, were more causal, percentage wise, being that millions more antipsychotics are prescribed now with the advent of euphemized “Atypicals,” or “Second Generations” but still the risk is there. I think it’s much less although I do see new cases on the internet and even though there are fewer of them, the amount of misery is unmeasurable. Human suffering isn’t digital or binary. Sorry, Charlie.

Ali had Parkinson’s Disease, very similar to Tardive.

When I developed this problem, one of my parents declared it ‘my fault.’ (It’s also my fault I have bipolar disorder and according to him my bipolar depressions are a matter of choice too). Mein Kamph. This is just to let you know what I deal with privately. Out in the world it’s way worse. Places, mental health organizations I used to volunteer for with high security clearance, bringing support groups into the psych ward, dealing with people who had thought disorders like schizoaffective…now that I’ve recovered? They only remember the trembling, anger and tears. NAMI, Rebel’s Drop in…they solicit help with things like newsletters or leading meetings, both of which I’m good at, but after applying, I never hear back. I’ve made the  mistake of verbalizing that I’m evidence of a sad statistic they’d rather not think about.

Newsflash: I’m not going to vanish simply because my side effect shakes you up!!!

No one was ashamed of him shuffling along, shaking hands with world leaders, pushing for peace and understanding. The funeral with representatives from a wide palette of faiths is further proof that all along, with every move he made, he made the world and better place.

I’m trying to do the same. I’m trying to raise awareness of my side effect, not in an alarmist way but to educate and share coping skills as well as ideas on delaying, deferring, preventing Tardive Dyskinesia. This does NOT mean you can’t take your mood stabilizing meds. You should. You might work with your doctor closely to see if you can find the ‘lowest therapeutic dose’ because the likelihood of getting the syndrome is directly tied to dose and how many years of exposure. After a decade the odds go up. Food for thought.

I’m not a big pharma hater, either. Their innovations have both helped and hurt me. But they’ve never hurt me on purpose and they are the only ones truly invested in our health, in my view.  Because of how gruesome and disfiguring the symptoms can be (and I dealt with that for three years before finding treatment), for obvious reasons, this side effect is shrouded in secrecy; the afflicted shunned and cloistered away, not for their protection but the ease and comfort (and profitability?) of others. Just asking.

That’s it for me.

Muhammad Ali, “The Greatest,” Movement Disorder and All

aliinactionali

I was wowed to see the special, separate “Ali” section in the New York Times. There are so many parallels between him and I. The most obvious being I have Parkinsonianism from Tardive Dyskinesia.

NOT TO BE ALARMIST BUT…if you take psych meds you should be aware that…

Tardive Dyskinesia is a “movement disorder” a side effect of some GI drugs and antipsychotics. Even atypicals.

It would seem the older ones, the Haldols, Thorazines and such, were more causal, percentage wise, being that millions more antipsychotics are prescribed now with the advent of euphemized “Atypicals,” or “Second Generations” but still the risk is there. I think it’s much less although I do see new cases on the internet and even though there are fewer of them, the amount of misery is unmeasurable. Human suffering isn’t digital or binary. Sorry, Charlie.

Ali had Parkinson’s Disease, very similar to Tardive.

When I developed this problem, one of my parents declared it ‘my fault.’ (It’s also my fault I have bipolar disorder and according to him my bipolar depressions are a matter of choice too). Mein Kamph. This is just to let you know what I deal with privately. Out in the world it’s way worse. Places, mental health organizations I used to volunteer for with high security clearance, bringing support groups into the psych ward, dealing with people who had thought disorders like schizoaffective…now that I’ve recovered? They only remember the trembling, anger and tears. NAMI, Rebel’s Drop in…they solicit help with things like newsletters or leading meetings, both of which I’m good at, but after applying, I never hear back. I’ve made the  mistake of verbalizing that I’m evidence of a sad statistic they’d rather not think about.

Newsflash: I’m not going to vanish simply because my side effect shakes you up!!!

No one was ashamed of him shuffling along, shaking hands with world leaders, pushing for peace and understanding. The funeral with representatives from a wide palette of faiths is further proof that all along, with every move he made, he made the world and better place.

I’m trying to do the same. I’m trying to raise awareness of my side effect, not in an alarmist way but to educate and share coping skills as well as ideas on delaying, deferring, preventing Tardive Dyskinesia. This does NOT mean you can’t take your mood stabilizing meds. You should. You might work with your doctor closely to see if you can find the ‘lowest therapeutic dose’ because the likelihood of getting the syndrome is directly tied to dose and how many years of exposure. After a decade the odds go up. Food for thought.

I’m not a big pharma hater, either. Their innovations have both helped and hurt me. But they’ve never hurt me on purpose and they are the only ones truly invested in our health, in my view.  Because of how gruesome and disfiguring the symptoms can be (and I dealt with that for three years before finding treatment), for obvious reasons, this side effect is shrouded in secrecy; the afflicted shunned and cloistered away, not for their protection but the ease and comfort (and profitability?) of others. Just asking.

That’s it for me.

Move Over, Movement Disorder: Tardive Dyskinesia and its impact on chronic back pain.

aquanotext

 

 

I know many are upset about the CNN report with Anderson Cooper on “The Opiate Epidemic.” I could go on and on about that one and my 16 years of a high quality of life due to these ‘dangerous’ drugs. Tardive Dyskinesia takes an injured low back and adds in jerky twists, turns and torks of my torso. Oh, my gosh. Even on pain meds I can feel the instant delivery of shots of pain from the twitching and spasm. Oh well. Seven years of STIMA and Chronic pain. So the topic of chronic pain magnified by tardive dyskinesia has come up because I finally had to quit using my ms contin after 16 safe, responsible, uncomplicated use. I even drove my dose down to a 1/3 of what is was before when I finally stopped due to side effects. 16 years. And I’m a person with a former history of substance abuse, exercise addictio9n, left handed, and bipolar. The very person they think is most at risk of going to the streets, to heroin or abusing their prescription. Puleeze!!!

Enough on that topic. It is what it is and that’s why I’ve stopped “Fighting” it.

ALTERNATIVE MUSIC THERAPY

I’ve been listening to 90’s hardcore Grungers “Mudhoney” and their epic “Don’t Touch Me, I’m Sick!” In my 7 years with Tardive Dyskinesia, regarding stigma, they lay it on thick. Real thick. Some doctors won’t even take you on.  They see you as a walking lawsuit. Not in a million years.  I’m in enough physical and mental pain and don’t want others to suffer just because I do. I wish Deb Houry from the CDC who says opiates don’t benefit long term, noncancerous pain!!!!!!!!!

 

But on Tardive I have really good news!!!!

A few years ago, I wrote about this. It’s food for thought if you are on an antipsychotic, new or old. However,  MUCH LESS CAUSE FOR WORRY side effect wise. Newer drugs are much cleaner of this neurological and even metabolic fallout.

Tardive Website links and Utube:

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

Tardive Vlogs Utube

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

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

7 Superfoods to turn you into a fat burning machine!

outofthewaterGotcha!!!!

There’s no ‘7 Foods, nor would I put a list (listicle) article on my blog! Gotcha!!! If you want a list, click these links about list articles- why I HATE & FEAR their growing dominance.

https://www.facebook.com/bpMagazine/posts/1370951026263754

http://www.bphope.com/blog/bipolar-strong-list-o-mania-shocker/

Before Seroquel I was ten pounds lighter than this. I am an exercise nut. Love it. Swimming is just one of my ‘things.’ Then I was put on Clozaril because it’s super sedating and I have tardive. Between it and the Xenazine Caring Voices Coalition (a charity for rare diseases) helps me get, and a benzo, I’m pretty good but struggle with weight.  In studies, Clozaril is twice as likely to result in weight gain, hunger, hyperinsulinism, metabolic syndrome and finally, type 2 diabetes, even weight independent diabetes.

I’m scared.