Category Archives: Resources

Find a pain specialist or pain clinic in your area

American Pain Foundation has a searchable database on its website under Finding Help.
Phone: 888–615-PAIN or 1-888-615-7246
Web: painfoundation.org

American Academy of Pain Management has a searchable database of medical facilities that have passed the American Academy of Pain Management’s Pain Program Accreditation testing and on-site inspection.
Phone: 209-533-9744
Web: aapainmanage.org

Pain.com has a searchable list of pain specialists and pain clinics all over the globe. Each of the specialists and/or clinics is listed in postal code order with the complete mailing address.
Web: pain.com/painclinics

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!

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

You are the expert of you

“You are the expert of you,” says Krista Brecht, a nursing and chronic-pain specialist at the pain centre. “You come with a suitcase filled with things that can be helpful, like the professor who devised a way of working on a computer while lying down because sitting was too painful. We help you to identify those things and help you to become more self-reliant.”

Today Berardinucci undergoes physiotherapy regularly, meditates or relaxes in a hot bath about five times a week and makes a point of walking daily. Some relief came when surgery reduced pressure on her spinal cord. She’s also been given morphine and a drug cocktail that features a new anticonvulsant, a recent addition to the pain centre’s treatment arsenal. As her pain has become more tolerable, her interest in life has been renewed.

An early proponent of biofeedback and of morphine for noncancer pain, the pain centre is constantly in search of new tools. Anticonvulsants used to combat epilepsy and small doses of tricyclic antidepressants, for instance, have proven useful for many patients.

“Scientific research into pain,” says the centre’s Gary Bennett, “is one of the most productive areas of neurological research right now.”

The pain centre is currently setting up a one-year pilot study about the potential benefits of smoking marijuana for chronic neuropathic pain. “We do not recommend cannabis to patients, but we have had good reports from patients using it for neuropathic pain,” says Dr. Mark Ware. “We would be interested in the possibilities of cannabinoids in the management of pain once clinical trials are completed.”

According to the most recent Health Canada numbers, 786 Canadians are legally permitted to possess marijuana, of which the majority (about 600) can also grow it for their own use. Former pain centre neurosurgeon Dr. Joseph Stratford says, “I know of patients whose lives have been changed for the better by smoking marijuana.”

Encountering patients at the centre with intractable phantom-limb pain after amputation impelled one young doctor, Joel Katz, to see if administering a local anesthetic as well as a general one during surgery could prevent pain. Previously, Melzack, Katz and Terence Coderre had studied the effect on animals and discovered that local anesthetic protects the body from postsurgical pain. A general anesthetic alone does not.

Convinced by their results in both animals and people, a growing number of anesthesiologists now use local anesthetics as a preemptive strike against postsurgery pain.

When Dr. Mary Ellen Jeans saw how some of the centre’s patients were aided by acupuncture—which stimulates major nerves—she began to test a noninvasive treatment involving electricity, called transcutaneous electrical nerve stimulation (TENS). Today hundreds of people undergoing physiotherapy benefit from TENS. Patients affix electrodes to painful areas or at nerve points, then switch on a mild battery-powered electrical current from a device that can slip easily into a pocket. Milena Svraka, 52, was referred to the clinic after being mugged one night by two men, one of whom punched her in the face and dragged her across the pavement by her right arm while the other kicked her in the legs and body. She didn’t go to emergency because nothing felt broken but visited her local clinic the next day. The doctor said her muscles were strained and prescribed a few days of rest.

Back at work, Svraka couldn’t ignore the pain in her back, neck, right shoulder and arm. Determined to find out what was wrong, she saw a variety of medical practitioners, and still got no relief. When she couldn’t stand the pain any longer, she revisited the clinic, where her doctor recommended she take an indeterminate sick leave.

Svraka, who had travelled widely and rarely taken a sick day, now felt confined to the house. “Pain changes who you are. I wasn’t up to being jostled by people on the bus or metro. I was in so much pain, I just wanted to curl up and have it stop.” On a neurosurgeon’s referral, she was directed to the pain centre.

After a consultation, Svraka was put on a low-dose antidepressant, tried traction therapy—used to relieve joint compression, promote soft-tissue stretching and improve circulation—and began treatment with TENS. “I started feeling warmth returning to my arm right away,” she says. She used the arm more and began to regain the ability to turn her head from side to side—something she hadn’t been able to do in years.

She has since added everyday chores to her list of what is possible—such as stirring pots and peeling vegetables—and continues to use her TENS machine daily, affixing electrodes to her arm, neck and shoulder areas. The gentle pulse emitted releases endorphins, relaxes the surrounding muscles and seems to close the gateway to her pain.

Today her pain is a bearable three or four on a good day. “I can do things I love again, like gardening and going for walks.”

Linda Chown had successfully blacked out the memory of a bicycle accident she had at age nine, when she flew over the handlebars facefirst into a telephone pole. Her two front teeth remained embedded in the pole, and she endured four years of treatment to restore them. When, as an adult, she began suffering unrelenting face pain and severe migraines, a friend suggested she try osteopathy. While being given a facial treatment, she suddenly recalled the accident, and the shock and pain came flooding back. Later, when the nearly unbearable pain wouldn’t go away, she was referred to the pain centre.

A psychologist, Ann Gamsa, was called in and worked with Chown on many personal concerns, including her failure to remember much for a period of time after her accident. Seeing that her difficulty in expressing certain feelings was likely a factor in her pain, Gamsa helped her patient look at the accident and its aftermath, discussing the shame, anger, fear and pain it caused. The intensive work, along with medication and coping strategies, sharply reduced Chown’s suffering. It also left her grateful that not only her body but her mind was treated, too.

Today other pain centres across Canada follow the MUHC Pain Centre’s proven formula of combining physicians with varying specialists. But much remains to be done in educating the world about pain.

“There are still many practitioners who blame the patient,” says Gamsa.

“That is useless, unfair and wrong.” Despite a stack of research supporting the use of opioids such as morphine to relieve long-term pain and research that proves pain sufferers rarely become addicted, many doctors are still unaware or unconvinced.

“Montreal is light-years ahead of us in Ontario,” says anesthesiologist Dr. Ellen Thompson. “Under the rules of our College of Physicians and Surgeons, any doctor can refuse to treat a patient with opioids.”

Still, in the medical world, little is known about most forms of chronic pain. Researchers have only recently begun to study the differences between chronic pain and the passing pain that accompanies a broken arm, a heart attack or surgery. Work has also shown that unchecked pain changes the body at the cellular level, creating conditions that can continue to cause pain even after tissues have healed or disease is conquered.

As yet there is no magic bullet for the treatment of chronic pain. Researchers have been looking for safer and more effective alternatives to morphine and other related opioid analgesics for more than a century. In the past decade, they have developed a new series of drugs called delta opioid receptor agonists. “These drugs mimic the effects of chemicals already found in the body, and studies suggest they may be effective painkillers without producing morphinelike side effects,” says Steve Negus of the Harvard Medical School.

Researchers are also assessing the usefulness of new creams, exploring whether genes predict pain sensitivity and looking into theories that, down the line, could stop pain before it starts.

Says Milena Svraka: “I went to the MUHC Pain Centre to find a better treatment and what I could do to help myself. I found out that a good day can be a miracle. Simply having less pain can be a miracle.”