I’m afraid my story might not be of help to anyone here as we all have some form of it. But it feels good to vent! I noticed, and it was only very rarely and under infrequent moments of duress, my neck turning involuntarily to the right and tilting up and then, within a minute or so, relaxing. It did cause me to become more aware of my neck posture and rigidity. On the belief that chiropractors are the specialists to see for neck problems I went to see one who questioned me briefly on my problem. I stated there were moments of stiffness and a curious inability to look straight ahead if I was having my picture taken for a passport photo and the like. He had me lay on my stomach and proceeded to pop out a point on my neck as well as an area between shoulder blades. Within 24 hours I was in excruciating pain and had a permanent, life-altering case of cervical dystonia for which I receive Botox injections quarterly, prescriptions for Lorazepam, Percocet and Neurontin. Plus he exacerbated discs in my back that required an operation within several months and cause intermittent bouts of pain that before my visit I had none of. I tried to sue but the burden of proof lay with me proving these conditions were non-existent before. If I did not have a modest business that allows me to make my own hours, I would without question on disability. I try not to think about that visit that changed my life. A really qualified chiropractor would have taken x-rays first and likely not applied the same treatment.
I suffered from depression almost my whole life (still do). Every medication tried or combination did not help. I was put on Seroquel (a “newer”) for “mood control”. For 10 years I drifted from treater to treater, each one simply re-writing more refills for Seroquel. Once in a while someone might notice involuntary jaw movements and casually prescribe Cogentin. But nothing changed and I was soon seeing another provider. After 1O years and 80 pounds heavier I decided to stop the Seroquel myself. Exactly 3 months later the movements started. My head constantly tilted to the left and was always moving. The pain got worse and worse as the symptoms did. However, I was one of the lucky ones. Right away I went to a local neurologist who said it was Tardive Dyskenesia and referred me to the movement center in one of our many hospitals in Boston. They diagnosed it as dystonia after just 1 appointment. Some people are surprised that Seroquel would cause this life-long condition. It wasn’t on the list of the “worse” meds. But I am living proof and whenever I come in contact with someone taking it or any other neuroleptic I give them my strong warning.
American Alliance of Cancer Pain Initiatives
AACPI is a national organization dedicated to promoting cancer pain relief nationwide by supporting the efforts of state and regional Pain Initiatives. The AACPI provides national leadership and advocacy for the Initiative movement, recommends program direction, supports Initiative growth and development, facilitates regular communication among Initiatives, fosters collaborations with other organizations, and organizes an annual national meeting.
American Chronic Pain Association
ACPA is an organization dedicated to facilitating peer support and education for individuals with chronic pain and their families. It also strives to raise awareness among the health care community, policy makers, and the public at large about issues of living with chronic pain.
American Pain Foundation
Phone: 888–615-PAIN or 1-888-615-7246
APF was founded in 1997 and serves people with pain through information, education and advocacy. Its mission is to improve the quality of life for people with pain by raising public awareness, providing practical information, promoting research, and advocating to remove barriers and increase access to effective pain management.
General Health/Culturally Diverse Organizations
Intercultural Cancer Council
ICC promotes policies, programs, partnerships, and research to eliminate the unequal burden of cancer among racial an ethnic minorities and medically underserved populations in the US and its territories.
The National Alliance for Hispanic Health Organization
The National Alliance for Hispanic Health is the oldest and largest network of health and human service providers servicing over 10 million Hispanic consumers throughout the U.S.
Office of Minority Health
Information and Personal stories of living with dystonia and dyskinesia
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|
|diphenhydramine||Benadryl||antihistamine (Increases the
effect of other pain medications)
|droperido||Innovar||antianxiety; anesthetic adjunct|
|levodopa||Larodopa, Sinemet||antiparkinson agent|
|lithium||Eskalith, Lithobid||antimanic agent|
|metoclopramide||Reglan||gastrointestinal motility stimulant;
|midazolam||Versed||induction anesthetic agent|
|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 [email protected] 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!