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.

There is good news on the Generic Price rising front

 

 

There is more transparency and stuff open to public inquiry via the freedom of information act. I’m working hard on this. I don’t know how many of us with bipolar disorder have disability and medicare but I do know 80% of first timers who received disability benefits on their first application have a mental health diagnosis. The donut hole part of Part D seems particulary unfair at times but that’s the way we let them set things up. I’m working on a piece for International Bipolar Disorder with helpful information and am pitching a longer version of this tale by way of a few other publications. We’ll see, it’s one of those topics where editors just want to stick their heads in the sand for fear of depressing their readers. That’s too bad, because there is some good news and people can make sense of this seesaw. AllisonBlackandWhite

On Charlie Sheen, Dr Oz and How ‘Hopeful’ it all is…can you keep it down a tad?

Bipolarbrainiac says:

21/01/2016 at 18:15 I hate it when they try to candy coat it. Yeah, partly because if Sheen starts meds, he’s already in middle age, he may not spend as many years battling side effects as we do. I have Tardive Dyskineisa (see my videos on IBPF’s Youtube page under Tardive Dyskinesia or my IBPF blog “Move over, Movement Disorder) I have a weight independent metabolic progression of high blood glucose from Clozaril, which I take for Tardive Dyskinesia and also it’s the only second generation antipsychotic that doesn’t make me thrash, as tardive is directly linked to atypical and traditional antipsychotics from Geodon and Abilify to Haldol and Thorazine. I’ve struggled with my weight. My antidepressant makes me nauseated and it’s hard to hold it down. But it’;s the only one that works. So I hang out with a freshly lined trashcan at the ready. It’s projectile vomiting. I found out that eating a high fat dinner enables me to metabolize and hold down a ¼ size of the tablet, so I separate it from all my other meds, take it right after dinner and then two hours later, if I have not thrown up, I take my other regular night meds. Ohhhh, the lenghths we’ll go to in order not to be depressed or manic.

I’m asking your opinion if you have time could you answer?

vera1999AllisonBlackandWhite

cropped-jamesclearer.jpgf

Should I change my photo rom the current photo on the left, switching to the one up above on the left or up above on the right, leaning into my hand?

Which is better for my blog, “Bipolar Strength: Rebel With A Cause?”

I’m still a rebel but I stand FOR things, not against them. My friend has helped me see this, so I’m modifying my blog to reflect it.

My name is Allison Strong. I used to be an outspoken, highly rated female (obviously), alternative disc jockey, a continuation of a music scene that defied the status quo, sometimes to good effect.

It was an era when we could talk about depression. I even had a regular guest named “the cemetery guy” and people absolutely loved him!

My boss wasn’t sure about it but when he saw my ratings spike, it decimated every preconceived notion he had about what made ‘good radio.’ People were ok with the dark side. The ratings bore that out.

 

People won’t admit it but want a good image. That’s why I went with something professional, obviously contrived. But it was a mockup of the late movie star James Dean, and his titular film “Rebel Without A Cause.” That’s why I went with the wifebeater T shirt one.

I want to show rebellion and questioning the status quo, doing things like researching medicines and their side effects before taking them, instead of doing what I did, blindly loading up on high doses of certain meds that had permanent neurological side effects.

 

It is what it is. I’m not angry about it anymore but want to ‘clue in’ the next generation of people getting an automatic bipolar disorder diagnosis and given a set of meds to take without question. It might not be so easy to get off them as it was to go on.

You can actually go online and google a med and the one in its’ class with the most class action lawsuits for a particular side effect, well you can add 2+2 or you wouldn’t be reading this right now. If I’d only have known.

So what do you think? Stay with Wifebeater and the darkness or pick the LOLOL laugh my head off shot or another professional smiley commercial headshot?

What is best? I’m having a hard time giving up the James Dean image. It’s a tough call. But I am modifying my name.

Allison

aka bipolarbrainiac

 

Out of my mind with atypical antipsychotic related metabolic issues

Hi, it’s Allison.

 

I know your time is valuable which is why I’m hoping you’ll accept my check for reading and evaluating this letter about my metabolism.

I’m really strugging.

On a day to day basis, I journal my food and my hunger level. I’m rarely satiated-famished all day with a hunger level of 7. It’s hard to focus on anything, especially my writing and/or daily duties like hygiene and self-care when all I do is prepare healthy food to carry around with me so I can eat every hour.

The hunger is worse when I take my Metformin. Why do you think that might be?

Eating, even low carb meals makes it worse. I can’t figure this out and need your help.

I don’t have hunger pangs but a feeling of jittery irritability and the feeling that I’d do anything to get some food. Not sugar necessarily but I did faint recently in Kohl’s and had to eat half a candy bar.

So the only time I’m able to do anything with a clear is in the morning before I’ve eaten. It’s my ‘golden time.’

It’s hard to ‘do the right thing’ when the right thing makes life harder.

As you know, I’m on Clozaril, the drug causing this metabolic problem. But it helps me greatly with Tardive Dyskinesia, stabilizes my moods, helps me sleep predictably and regularly, even though I’m in pain most of the time.

I know you recommended I try Saphris or Latuda but those drugs likely as heck, according to my shrink, would aggravate my TD the same way Invega, Invega IM, Geodon, Risperdal and Zyprexa did. At the end of a three year period of no symptom control, even the sedating seroquel aggravated the tic, or rather; thrashing. Forget about sleep or signing my name. It was a horrible period of time.

I am one of the unlucky few who can’t take the highly effective first line treatment Benztropin (Cogentin).

I pay a high price for TD symptom relief beyond metabolic difficulties. Weight management is epic. Thank god I love exercise (weight train and 8 hours of cardio a week), and changed my diet to 95% raw foods.

I have monthly blood for absolute neutrophils and WBC, had to reduce my Enbrel for psoriasis and have to really take care of myself to have good labs. It’s a pain in the but safety protocol Teva and the other generic giants have in place to prevent agranular cytosis. (sp?)

As for your suggestion that I ‘get off Clozaril,’ I’ve tried. I put myself in intensive outpatient so I could try in a supervised setting. First we tried Invega, Seroquel, Risperdal, Abilify and Zyprexa, all of which aggravated my symptoms even more. You probably already know that atypical and traditional antipsychotics as well as Reglan cause Tardive Dyskinesia in the first place.

This is totally illogical but when one removes the causal drugs, even carefully titrating lower and lower there’s this “Withdrawal Emergent Syndrome” where the symptoms are wildly worse. I was admitted to the ER three times for this and as you might imagine, the ER docs just wrung their hands, shaking their heads. You’d have thought they were the ones in observation from the looks of their faces!

I’ve had bipolar I since my first full blown manic episode in ’89. For a long-termer like me, Lithium would have been worse. I’m glad it’s my only drug allergy or I might be on dialysis by now, much worse than what I deal with currently.

I need you to help me buy time on this metabolic thing, help me delay the progression. (Hopefully until after I die).

I’ve already had five foot surgeries (Fusions bilateral and more) from professional sports overuse injuries (pro beach volleyball in LA), and I really like what’s left of my feet!! LoL!

Is there any way that I could have my blood sugar levels monitored more frequently as I employ changes in my weight training, diet, herbs and other holistic approaches? I’m finding Cinnamon helps with the hunger but online the reports are mixed. You’re pretty advanced and I think you could really help me delay diabetes.

I might even try pancreatic supporting chiro and possibly acupuncture. But first I need to find out if my Metformin is too high or why I’m starving all the time.

I’d like to do this and ask you if you think I should see an endocrinologist.

Thanks so much for reading my missive. My shrink says I’m an ‘exotic.’ Thank God he puts up with me. I’ve stayed out of the inpatient psych ward for sixteen terrific years save a few long term bipolar depression relapses. Now that I’m writing for four different mags, life is pretty good, except when I’m hungry all the time!

 

Sincerely,

Allison Strong

 

Comments anyone? Anyone else out there struggling with these issues? I really hope to buy time until science catches up to this problem. Believe me, they’re scrambling. There’s just too much good money to be made!!!