Sources of financial assistance

(lists of organizations that will provide information on financial assistance)

Insurance Resources

The Center for Medicare Advocacy, Inc.
Phone: 860-456-7790
Web: medicareadvocacy.org

CMA was founded in 1986 to provide education, advocacy, and legal assistance to help elders and people with disabilities obtain necessary healthcare

The Center for Patient Advocacy
Phone: 800-846-7444
Web: patientadvocacy.org

An organization actively addressing the issues concerning access and quality of care for patients with cancer. It has a network of over 140 volunteer lawyers to help patients deal with insurance, employment and other issues associated with medical care for cancer patients.

The Patient Advocate Foundation
Phone: 800-532-5274
Web: patientadvocate.org

PAF stated mission is to serve as an active liaison between the patient and [his/her] insurer, employer, and/or creditors to resolve insurance, job discrimination, and/or debt crisis matters relative to their diagnosis through case managers and attorneys. PAF seeks to safeguard patients through effective mediation assuring access to care, maintenance of employment and preservation of their financial stability.

Families USA
Phone: 202-628-3030
Web: familiesusa.org

Families USA is an organization dedicated to the achieving high quality, affordable health and long-term care for all Americans. It works on the national, state and community levels as the voice for health care for consumers.

Web Information on prescription programs

The MedaKate Organization
Web: medakate.org

This site provides information on different prescription programs for indigent patients.

Needy Meds
Web: NeedyMeds.com

This site also provides information on different prescription programs for indigent patients.

RxAssist
Phone: 877-844-8442
Web: rxassist.org

RxAssist provides health care providers with information on accessing more than 100 pharmaceutical manufacturersπ patient assistance programs. These programs usually offer a limited supply of free prescription medication to eligible patients.

The Cost Containment Research Institute
Web: institutedc.org

This site also provides information regarding patient assistance programs at pharmaceutical manufacturing companies for indigent patients.

Support groups

American Chronic Pain Association
Phone: 916-632-0922
Web: theacpa.org

Organization offering support and information for patients with chronic pain, their families and support groups.

The National Foundation for the Treatment of Pain
Phone: 831-655-8812
Web: paincare.org

Organization dedicated to providing support for patients who are suffering from intractable pain, their families, friends and the physicians who treat them.

Caregiver Support

Family Caregiver Alliance
Phone: 415-434-3388
Web: caregiver.org

Information resource on long-term care.

Friends Health Connection
Phone: 800-48-FRIEND (800-483-7436)
Web: 48friend.org

Nonprofit support network that connects people with similar health problems for the purpose of mutual support.

National Family Caregivers Association
Phone: 800-896-3650
Web: nfcacares.org

NFCA is a grass roots organization created to educate, support, empower and speak up for those who care for chronically ill, aged or disabled loved ones.

Well Spouse Foundation
Phone: 800-838-0879
Web: wellspouse.org

WSF is an association of spousal caregivers.

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!

You are not alone