People who suffer from movement disorders called dystonias experience painful involuntary muscle contractions that can seriously disrupt their lives.
But a new study led by a University of New Mexico neurologist finds that a surprising number of dystonia sufferers don’t receive any treatment – and those who do don’t follow a consistent treatment regimen.
In a paper published in the journal Neurology, Sarah E. Pirio Richardson, MD, an associate professor in the Department of Neurology, found that nearly three-quarters of dystonia patients were on some form of medication.
“It started with a very simple question – what do people actually take for the treatment of dystonia?” Pirio Richardson says. “We actually didn’t know that.”
A majority of the patients surveyed were using botulinum toxin (better known by the brand name Botox), an injectable drug that temporarily paralyzes muscles and can alleviate many dystonia symptoms for a few months at a time.
Other medications used by patients included muscle relaxants, benzodiazapines (such as Valium), antipsychotics and drugs typically used to treat Parkinson’s.
“Significantly, up to 25 percent were not using medications at all,” Pirio Richardson says. “That’s a huge number.”
There were also marked geographical differences in how medications were prescribed, she says. Fewer patients in the northeastern U.S. were using medications, the study found.
Why that would be so remains a mystery, Pirio Richardson says. “We don’t know the answer to that. “It wasn’t within the data we had that we could tease apart.”
Pirio Richardson and her collaborators are members of the Dystonia Coalition, an international group of researchers focused on better understanding and finding new treatments for this debilitating neurological condition, which can take many forms. In some cases, muscles around the eyes are affected, causing rapid,uncontrollable blinking. Cervical dystonia cause the head to twist to one side. Other parts of the body may be affected as well.
The researchers examined records for 2,026 people who had agreed to participate in a bio-repository project at 37 sites in the U.S., Canada, Europe and Australia.
Patients enrolled in the project supply information about their health history, provide a blood sample and consent to be videotaped, so as to capture the nature and severity of their dystonia symptoms. “It’s the largest study of dystonia patients in the world,” Pirio Richardson says.
The current study is a “snapshot” of current medication use, Pirio Richardson. The next step is to study how patients use medication over time. Eventually, the research will help guide the development of best practices in managing dystonia treatment.
It’s a case where research raises new questions even as it answers others, Pirio Richardson says. “I think this told us we have more work to do.”