Your rights to pain management

Joint Commission on Accreditation of Healthcare Organization (JCAHO)
Phone: 630-792-5000
Web: jcaho.org

The introduction of the JCAHO standards on pain management was the result of a two-year collaborative effort between the Joint Commission and the University of Wisconsin Medical School. The standards set requirements for the assessment and management of pain in accredited hospitals and other health care settings.

American Pain Foundation
Phone: 888-615-PAIN or 1-888-615-7246
Web: painfoundation.org

APF is an independent, nonprofit information, education and advocacy organization serving people with pain. For complete statement of your rights for pain care, visit the APF website and click on Pain Care Bill of Rights.

Information on drugs that can and do cause dystonia

A person with medication induced dystonia.
Every now and then folks ask me to list the list of meds that can and do cause drug-induced movement disorders. This is to educate you, if you are concerned about the side effects of a drug you are currently taking, speak up, talk with your doctor. If you are starting a new one, you will be the only one to investigate it. Arm yourself with knowledge. Be an informed consumer. Listen to that little voice in your head, and be in tune with your body.

Remember, this is YOUR body. You have the right to ask questions and ultimately decide if a med is right for you. Please know that this list is limited and does NOT include all of them…for eg. Risperdal is not on it, but it does cause it. If I can help in any way with questions about this list or my other post, ask away.

*By the way, it does not take extended lengths of time taking these medications in order to experience acute dystonic reactions…for lots of folks, ONE pill is all it takes!

This drug list page is intended to provide information only! We do not advocate any particular treatment option. Therefore, it is strongly urged that patients do not change their method of treatment without first consulting with their physician.

INFORMATION ON DRUGS THAT CAN AND DO CAUSE DYSTONIA

“Some drugs in the neuroleptic category (psychiatric drugs) may cause acute dystonic reactions: thorazine, Haldol, etc. Ten to twenty percent of patients experience acute dystonic symptoms at the initiation on treatment. Some drugs that are used for nausea and gastrointestinal problems are also neuroleptic so they can cause the same problems – drugs like Reglan and Stematil. These can induce acute dystonia. All of these drugs, when they’re used over long term, carry a 20 to 30 % risk of long-term abnormal movements called tardive dyskinesia, and some people with tardive dyskinesia get a form of dystonia, called tardive dystonia. It’s an extremely difficult problem to treat.”

“Alcohol is a recognized precipitant of paroxysmal dystonia, which is a very uncommon form. On the whole, alcohol in moderation does not have an adverse effect. There is an alcohol-responsive myoclonic dystonia, which responds very well to alcohol. People who chronically abuse alcohol can get a series of involuntary movements-tremors, Parkinsonism, and tardive dyskinesia. So chronic heavy alcohol intake is still not being recommended.”

Drug Induced Dystonic Reactions:

Certain drugs have been implicated as causing dystonic reactions or dystonia. These agents are not routinely the cause of SD, but can potentiate or aggravate the preexisting disorder. The following is a listing of the drugs which have been reported OR have the potential to cause dystonic reactions. Whenever possible, dystonia patients should avoid the following agents, except at the recommendation of a physician knowledgeable in the treatment of dystonia.


GENERIC NAME TRADE NAME CLASSIFICATION
alprazolam Xanax Antianxiety agent
amitriptyline Elavil, Endep antidepressant
amoxapine Asendin antidepressant
benzquinamide Emete-Con anti-nausea/vomiting agent
bupropion Wellbutrin antidepressant
buspirone Buspar antianxiety
carbamazepine Tegretol anticonvulsant
chlorprothizene Taractan neuroleptic
chlorpromazine Thorazine neuroleptic
clomipramine Anafranil antidepressant
clozapine Clozaril neuroleptic
desipramine Norpramin antidepressant
diphenhydramine Benadryl antihistamine (Increases the
effect of other pain medications)
doxepin Adapin, Sinequan antidepressant
droperido Innovar antianxiety; anesthetic adjunct
fluoxetine Prozac antidepressant
fluphenazine Prolixin neuroleptic
haloperidol Haldol neuroleptic
imipramine Tofranil antidepressant
levodopa Larodopa, Sinemet antiparkinson agent
lithium Eskalith, Lithobid antimanic agent
loxapine Loxitane neuroleptic
mesoridazine Serentil neuroleptic
metoclopramide Reglan gastrointestinal motility stimulant;
anti-nausea/vomiting agent
midazolam Versed induction anesthetic agent
molindone Moban neuroleptic
nortripyline Aventyl, Pamelor antidepressant
perhenazine Trilafon neuroleptic
phenytoin Dilantin anticonvulsant
pimozide Orap neuroleptic
prochlorperazine Compazine anti-nausea/vomiting agent
promazine Sparine neuroleptic
promethazine Phenergan antihistamine
protriptyline Vivactil antidepressant
thiethylperazine Torecan anti-nausea/vomiting agent
thiothixene Navane neuroleptic
trifluoperazine Stelazine neuroleptic
triflupromazine Vesprin neuroleptic
thioridazine Mellaril neuroleptic
trazadone Desyrel antidepressant
trifluoperazine Stelazine neuroleptic
trimipramine Surmontil antidepressant
verapamil Calan, Isoptin antianginal, antihypertensive

Dopamine antagonists which are generally used to treat psychotic disorders and have been reported to make dystonia worse, should be used with caution. They include phenothiazine, haloperidol, tetrabenazine and pimozide. These drugs are usually avoided in the treatment of one with dystonia due to the potential to worsen dystonia. But in some cases they may be useful. It is important that the doctor prescribing these types of drugs be familiar with dystonia.

More information on drugs that can and do cause dystonia: www.wemove.org



This message was posted on MGH Message Board by hilltopok

If you would like more information about tardive syndromes and the drugs that cause them, contact her at hilltopok@msn.com or visit her website at tardivedystonia.org Remember, you could be the one to save another from a life-long painful disorder. Please educate, then pass it along. Thanks so much!

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 We (the creators of LifeinPain.com) are not medically qualified and do not provide any medical services.

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 The sole intent of any information found on this web site or via links from this web site is to promote public education. Any medical information found on this web site or via links from this web site should not be used as a substitute for professional medical advice, evaluation and/or treatment. Please consult your General/Family Physician and/or Professional Health Care Providers for any medical advice and treatment.

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Welcome to Life in Pain.

Disclamer

The premise of our site is to give chronic pain sufferers a voice and to change public, media and medical opinions about chronic pain it’s causes and the medications used to treat it. We need people to learn the difference between addiction and physical dependence. We want to feature chronic pain sufferers in a way that will open people’s eyes to our world. We want people to see that we are not running around searching for the next “fix”, and that chronic pain sufferers are consistently under medicated. On our web site we want to show what it feels like to be debilitated from consuming pain and what pain looks like. By featuring chronic pain sufferers and telling their personal stories along with pictures of their lives.

If you’d like to participate all you need to do is add your story.

If you need help or would like to create your own page with pictures and links or what not, then just email us at mail@lifeinpain.org and explain what you would need help with

We suggest you include:
Short Biography.
The story of your life with chronic pain.
Pictures.

Thanks.
Email us at mail@lifeinpain.org

Doctor guilty of elder abuse for undertreating pain

American Medical News

A California court ruling could spur physicians to become more knowledgeable about the best way to treat their patients’ pain.

Physicians might want to get up to speed on the latest pain management techniques available now that a California jury has held a doctor liable for undertreating pain. The jurors in June found the internist guilty of elder abuse and recklessness and awarded the now-deceased man’s family $1.5 million.

The guilty verdict came even though Wing Chin, MD, prescribed Demerol (meperidine hydrochloride) to 85-year-old William Bergman to ease the back pain he complained of when he arrived at the Eden Medical Center in Castro Valley, Calif., in 1998. He sent Bergman home with Vicodin (hydrocodone bitartrate, acetaminophen) and a skin patch containing another drug. Dr. Chin used those pain killers after a dose of morphine temporarily stopped Bergman’s breathing.

But Bergman’s children said the pain killers their father received weren’t strong enough because he was given a fraction of the normal dosage. On a one to 10 scale with 10 being the worst, he ranked his pain between 7 and 10 during his six-day hospital stay. Consequently, they said, he suffered unnecessarily during his final days battling cancer.

The jury agreed. … continue reading on http://www.ama-assn.org

When I took my first steps I didn’t feel like Supergirl – it just felt natural

At the age of seven, Gemma Quinn was paralysed in a car crash. Doctors said she would never breath unaided let alone walk again. Now, 11 years later, she has proved them wrong. Elizabeth Day hears her astonishing recovery tale

The television screen flickers into life. A beautiful blonde teenager in a red, velour tracksuit stands shakily upright and takes a single step.

The lounge room erupts in shrieks of joy, screams of disbelief, the sound of clapping hands and muffled crying. In the middle of it all, the girl in the red tracksuit smiles – composed and separate from the mayhem that surrounds her. Then the screen goes fuzzy.

Gemma Quinn’s first step in more than a decade was captured on video as a 44th birthday present for her father.

“I wanted to do something special for my dad, because we have a really strong bond and he’s always been so supportive of me,” says Gemma. “By the end of it, everyone in the room was crying. There wasn’t a dry eye, but I didn’t cry. I always thought it would feel different when I walked, but it didn’t. It was instinctive. I didn’t even think about it. I just did it.”

“Just do it” is a catchphrase that encapsulates Gemma’s attitude to life. On the day we meet, the motto is emblazoned in loopy white writing across the grey sweatshirt she is wearing. The three words sum up the cast-iron determination that has characterised the years that have passed since Gemma was paralysed from the neck down in a car crash at the age of seven.

On June 6, 1992, Gemma was asleep in the back seat of a Rover Maestro driven by her father, Mike, on the way to a family holiday in North Wales. On a winding country road, the car was clipped by an overtaking lorry, ploughed into a wall and flipped over into a field.

The accident left her with a severed spinal cord and a categorical declaration from her doctors that she would never walk again. She would, they said, be confined to a wheelchair for the rest of her life, dependent on 24-hour care, unable even to breathe on her own.

“I never let that get me down,” she says with a smile. “I just got on with it.”

After nine months in hospital on a ventilator, Gemma had recovered the ability to breathe independently. The doctors, amazed by her determination and their own misdiagnosis, still insisted that she would never recover any movement from the neck down. But last November, after a decade of immobility, she began to regain sensation in her feet.

In all, it took 11 years of “getting on with it” before Gemma’s star turn last month in the video for her father. He broke down in tears when he watched it. Within a fortnight, Gemma could walk 20 paces, ride an exercise bike and kick a football.

Now she talks of having the metal rod in her back surgically removed, of regaining full movement and of her desire to travel to Kenya. The medical profession, slack-jawed in astonishment at her transformation so far, would be wise not to say “never” now.

…continue reading on
http://www.telegraph.co.uk…

CHRONIC PAIN FROM HELL ñ AND BEYOND!! (Part V)

Part V in My Never-Ending Quest to Get Medical Marijuana Legalized

Dear Doc Zombie:

Itís the day after my husbandís most recent brush with apathy at the hands of the UN-health system. Anyone following our story AND in Chronic Pain will relate, Iím sure.

My hubby, Don, had an MRI of his cervical spine (neck) and lumbar spine (lower back), which revealed ñ GET THIS..new ALERT. All discs in his spine are either ruptured, pressing on the nerve center of his spinal column, radiating pain down both arms and legs, to say nothing of the entire head and shouldersÖall but 5 discs in his entire spine are damaged and getting worse.

So we show up at the surgeonís office yesterday. We wait for over an hour in his bleak and boring (no music) dungeon of a waiting room, and then get ushered into the ante-chamber of bad news. The doc enters smiling and shaking his head as if to say, ìDon, you know that youíre screwed, of course. You shouldnít even be walking, never mind be alive and not-quite-kicking. Then he spends about 5 minutes, seems totally un-prepared for our visit, tells us he has to pull Donís MRIís and makes another appointment for next week!!! I was so pissed, I couldnít see straight. You mean, youíve had the results for 1 _ weeks and we show up, and you donít have them? After waiting over an hour in excruciating pain.?? Are you for real?

For the last month and a half, we have had to endure more torture waiting for approval of my husbandís recent treatment by the surgeon from the damn insurance company. Never mind a Pain Clinic. The doc DID prescribe something for pain (finally..first time in 3 years, and with ALL my husbandís documented injuries. It is inhumane), Tylenol with Codeine..Well, Whoopie-teee-aye-ohÖTry putting a band-aid on a heart attack, why donítcha? Then, to add insult to injury, he cuts him off after a weekís worth of codeine. What an empathetic creature.

Then he informs us that the local pain clinic doesnít accept the insurance (Workerís Comp, for Godís sake!!) my husband has. So where are we? Square ONE, thatís where. OH, the doc also said ìItís not my job to prescribe medications to anybody who needs itî, all this while Iím staring at a diploma that he got for ìPAIN MANAGEMENTî..What theÖ.????? I donít get it. OH, then he says he knows of docs in Massachusetts who prescribe Marinol (liquid THC) which is legal, but he wonít do it out of fear. Is this who I want operating on my hubby?

What a crock of crap. Who do you have to shake uncontrollably around here to get people to listen to reason? Iím the one watching my husband shuffle to the bathroom at 2:00 a.m. after hours of turning over and over in bed (like some hot dog on a grill at 7-Eleven), and dying of the pain, NEVER finding comfort, and being made to feel invisible by the health care system (and I use the term VERY loosely), a system that no more cares about my husband than they care about the elderly, the indigent or the homeless, never mind people who suffer Chronic Pain.

Who cares about Sleep Deprivation?? Who cares that you canít even lift a gallon of milk, because itís too damn heavy, or that by the time you wash your face and raise your arms for that long, youíre exhausted? Isnít this the Land of the Free and the Home of the Brave? But Bush procures billions to free Iraq, while my husband and I and millions of others donít have relief, not to mention the 43 million that have no health insurance. Itís an outrage, thatís what it is. DAMMIT!!

NO ONE CARES. Is there not a doctor in the house who can tell us how to get Marinol prescribed in a state where it IS LEGAL, because several of our Vietnam Vet friends have scripts for it. So whatís the deal? Maybe if my husband could get Marinol, all the extra money we have will NOT have to be spent on other medication and we can get necessities like furniture, health insurance, etc.

As it stands now, I have NO MEDICAL INSURANCE other than Medicare (thank God for that!!). I have neck and back surgeries coming up and suffer the tortures of the damned. It sure would be nice to live like a semi-normal person, but acceptance of reality is all there is.

The reality is this: Our conditions WILL DETERIORATE as we get older. Marijuana is our only source of pain relief. We go broke trying to buy it, because the ëpowers-that-beí are so damn greedy, theyíre all in ëití together. The damn drug companies, the politicians, the insurance companies, the DEA:..OH IT IS TOO HIDEOUS to talk about.

When will people see?? What can we do that Iím not already doing to speed the process along vis-‡-vis legalizing Medical Marijuana???

I welcome any feedback which could be of benefit to my husband and me. And now, my weary neck and hands retreat..more later, and thanks, as always, for listening. Hey, Doc..in case I donít get in touch before the holidays, you and your family have a fantastic Christmas and a peaceful and joyous holiday.

JC, Chronic Pain Sufferer

You are not alone