Opiod Replacement Pain Medicines in Pipeline..?: Will we get ’em? Do they want us to get ‘well’?

Chickencoop

So much is being made on black marketed prescription drugs like oxy and ‘the box’ that you gotta wonder The FDA and DEA are at cross purposes because pain advocates are pushing back, assisted by big pharma. Why not, right? The CNN Story with Anderson Cooper distorted it further. So much confusion we’re not entitled to ‘straight dope’ on this issue. I recently learned IBUPROFEN and Tylenol, my first line “go tos” destroy a digestive enzyme, furthering the constipation problem I suffer with it. hey, someone’s gotta speak up.

So, here’s holistic hope to hold onto, sorta..this will be a pricey pharmaceutical too: Hot off Press this week-Duke University Study isolated pain receptors TRPV4 and TRPAI and have a way to activate them; releasing natural endocannibinoids (not endorphine..that was debunke4d ages ago) to secrete natural painkillers for our comfort.

Organic stuff, sad to say, like MS contin, which I took for sixteen years, are actually better for your overall systemic health than NSAIDs which harm the liver and destroy digestive enzymes. Whoops I’m repeating myself. I just wanted you to know the knews. \

And I have yet another natural way of dealing with chronic pain in this article. A click is all it takes to make my day. At least you aren’t making Mark Zuckerberg of Facebook richer. If you click this, you are helping me and my platform. Am I going about this the wrong way? I should be listening to your aches and pains and I promise to do more of that. It, too, is a natural painkiller, releasing a substance called Oxytocin, the ‘love’ hormone begotten of human interaction with those you care about even if you’re separated by miles and held together by broadband.

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

 

NPR on Prince, The Replacements, Minneapolis Music Scene & 1990’s sax rock band Morphine R.I.P.

princetwoNPR had a whole feature on Prince and Minneapolis today that made me cry when I heard another Minneapolis band, The Replacments. They also played Rrrriott GiRrrl Band “Babes in Toyland.” Were they from Minnesota as well?

I don’t care how Prince died. Everyone has a bottom line. His? To continue performing a bit and KILL THE PAIN. I’m in the same boat.

Only I went cold turkey three or four weeks ago. I slept thru most of it. I went down for a week.

After 16 years of safe use that restored function and allowed me to lift gentle weights, ride the life cycle and swim, The side effects  got to the me. The medicine, even at 1/3 the dose I’d taken in previous years, ( according to experts, EVERYONE goes up in dosage and tolerance) my body shut down. I quit.

If I’m such a ‘junkie’ as the former BFF said, why are there still 100 of The MS is still here? Answer: I never took the full dose prescribed because I lived in fear of terrible, disabling flareups from the “Interventional Pain Therapy” spinal injecttions,  all ten of them 200.00 each and a failure. I also did piltes and paid for four expensive and pointless rounds of PT, stuff I could do at home and electrostim making me worse.

I’m sorry Prince and the 20% of pain patients who become problem abusers   turning to  the streets for a cheaper fix and a cheaper high have to die. I pay for the high they’re chasing. This kills me.

There are measures like Suboxone that are way safer tho you have to be rediagnosed and the idea is to wean ya down. What about the pain? I’ve tried everything, holistic, medical, athletic, hydration, cutting back to gentle exercise but at least “The Box” won’t kill you and buys time while you look for something safer. The truth is, Opiates are a naturally occurring substance, much more  natural than the primitive nerve burning  Coolief, which would work for me but Medicare doesn’t cover it.

The doctor wouldn’t  give me any estimate of my of pocket responsibility or help me set up a payment plan.

So the one ‘respectable’ thing that I would have paid thousands for to get a year of comfort is out of my financial reach and  I have money, too.. It’s called “Coolief,”they have no 800 number and Medicare should be prior authorizing and covering.

It’s three years old. They haven’t caught up.

But back to Prince.

I was listening to Sirius 27, “Deep Tracks” and they had an interview with a local yokel music critic speaking about Prince’s role in Minneapolis, currently a music scene in the grieving process. Then they played a band that should have been a big hit but just …sort of slipped between the cracks. They were on a major record label, critically acclaimed, alt guitar pop with a grunge overtone in the 90’s all of the right ingredients. I know from beign married to a Record Guy (Geffen Records…Eagles, Joni Mitchell, Beck, XTC, Aerosmith in the late 90’s, Jackal, That Dog, Nirvana, Courtney Love, Elastica, Garbage…a boutique, eclectic artist roster from way back) but back to yesterday’s NPR Broadcast

“The Replacements,” Minneapolis other “Favorite Sons”  (‘Merry Go Round; ‘I will Dare’  were songs) were often compared to a British outfit called “Big Star.” Neither of them made it. Just like Prince.

 

Swimming With Sharks at Stanford

stanfordsharkmhammerhead

I went to Stanford on a Volleyball Scholarship. The elitism and exclusivity of this University, Stanford University, forms a bond like no other.  I never felt it. But it exists and I think it’s why this Stanford graduate judge gave the Stanford Scholarship Swimmer who’s been convicted of sexual assault a huge break.

Instead of 6-10 years, a standard sentence, his six months is being knocked down to three months.

Stanford-Stanford. I wasn’t a straight A student, president of the student body, multilingual chemist, ok, strive as I might. I’m a slow learning with racing thoughts, being bipolar, hypomanic within ‘well’ cycles, if you call them that.

This swimmer who possibly drugged and assaulted a semi conscious young woman is unconscionable.

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.

“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.

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.

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.