Dystonia patients perform a balancing act between medication benefits and side effects.
Oral medications used to treat dystonia vary greatly for each individual and should be managed with your doctor. While other medications may be prescribed to address symptoms unique to individuals, this article focuses on the more common oral medications used to treat dystonia.
About 70% of dystonia patients take some type of medication either injectable or oral. Of patients taking medications, more than half either use oral medications alone or in combination with botulinum neurotoxin (BNT).
“All the drugs we use for dystonia are off label. There is no oral medication approved by the Food and Drug Administration specifically for use with dystonia,” said Dr. Cynthia Comella, a movement disorder neurologist at Rush Medical Center, Chicago.
The most common oral medications used to treat dystonia fall into five categories: anticholinergics, benzodiazepines, baclofen, dopaminergic agents, and tetrabenazine. All oral medications prescribed for dystonia are systemic, meaning they affect the entire body. Side effects are common and need to be managed under a doctor’s supervision.
Relying On Experience
Patients should ask their doctors which medications seem to work best for their dystonia types, as well as possible side effects and how often they occur. “Patients need to be
aware of side effects. If they occur, they should contact their physician so the medications can be altered,” Comella said.
Unfortunately, there has not been a lot of research conducted on oral medications for dystonia, so little scientific data exists to point physicians to one medication over another.
With no clear data, physicians and their patients rely on the experience of others with the medication. Physicians recommend what’s worked with other patients who have similar dystonia types, and dystonia patients rely on their own experience by giving the drug a test run.
Neurologists typically start patients on small doses of medication and ramp the dosage up slowly to find the right balance between benefit and potential side effects.
Introduction of an oral medication typically takes about three months, depending on the medication. “With dystonia you don’t get an instant benefit. You want to give it some time to see whether it’s beneficial and to see if there are adverse effects at that dose,” Comella said.
Understanding Side Effects
Side effects and their severity vary by medication and individual, but nausea is common with many oral meds taken for dystonia. Anticholinergics can affect the memory, urinary retention and cause dry mouth. “I hear things like, ‘I can’t think. I can’t remember things. I feel sedated,’” Comella said.
Benzodiazepines, which are typically used as antianxiety agents, are most frequently used by botulinum neurotoxin (BNT) patients who take the medications during the wearing off period before their next BNT injection. Common side effects include drowsiness, light-headedness, confusion and dizziness.
Baclofen can be effective particularly in children with dystonia because their brains can tolerate the side effects better, Comella says. Interestingly, children take higher doses of baclofen and reduce dosage or eliminate the drug as they age. Common side effects are sedation and nausea.
Some patients with specific types of dystonia respond very well to dopaminergic agents, which increase the neurotransmitter dopamine. While dopa-responsive dystonia is rare, Comella says it is worth exploring especially with newly diagnosed patients. “It responds almost in a curative fashion to low doses of carbidopa levodopa. You don’t want to miss it, particularly in children,” she said. Short term side effects are minimal.
Dopamine depleters, tetrabenazine being the oldest and most commonly used for dystonia, reduces the activity of dopamine. The main side effects are depression, sedation and possible drug-induced parkinsonism. Several newer modifications, deutetrabenazine and valbenazine, have demonstrated less severe side effects but remain largely untested for dystonia.
Communicating with your doctor is critical when evaluating medication effectiveness, side effects, dosage and even termination. Just as you ramp up oral medication dosages under the supervision of a physician, dystonia patients need to ease off the medications with incrementally smaller doses as well.
“You don’t want to start something, get a brain used to it and take it away cold turkey,” Comella said.
She also recommends patients talk with their pharmacists about possible interactions with other drugs they may be taking, such as anticoagulants, antiarrhythmics or antihypertensives.
Herbal medications are not recommended for treating dystonia, and patients need to inform their doctors of anything they’re taking in that realm as well. “People think if it’s an herb, it’s natural, it’s safe,” Comella said. “Not true. You just don’t know what you’re taking when you take an herbal medication, and they all have pharmacological activity.”
Managing oral medications for dystonia is a process that requires open communication and trust between doctor and patient. Doctors may even need to help patients “clean
house” by getting rid of medications that aren’t effective and are burdening them with side effects.
“Managing patient expectations is one of the most important things a doctor needs to do, educating them about what to expect and when to call us,” Comella said. “We don’t dictate treatments; we discuss treatments because every patient’s situation can be different. If you don’t focus on the patient, you’re missing the boat.”
STRATEGIES FOR MANAGING ORAL MEDICATION
►Bring a list of all prescription medications to your doctor.
Before beginning oral medications for dystonia, bring a list of all current medications to your doctor to check for potential drug combination interactions and initiate open, honest communication about compliance.
►Talk to your doctor about side effects before starting medications for dystonia.
Understand the common and more extreme side effects for oral medications, so you know what to expect and when to call your doctor should they occur.
►Ramp up dosages slowly under your doctor’s supervision.
It may take two to three months to increase dosage to achieve the right balance of benefit and side effects. Ramping up the amount slowly allows the body to get used to the medication, reducing the potential for more severe side effects.
►Call your doctor if you’re experiencing unusual or extreme side effects.
Side effects are common with all medications taken for dystonia. However, call your doctor immediately with any questions, concerns, or if you’re experiencing something you’ve never had before.
►Do not abruptly quit oral medications taken for dystonia.
If you decide the medication isn’t right for you, call your doctor to help you ease off the medication with incrementally smaller doses.
►Reevaluate oral medications periodically.
Sometimes the combination of oral medications taken for dystonia and other health problems can become unmanageable both in terms of side effects and daily maintenance. It may be time to “clean house” and reevaluate which medications are helpful and which ones are not.
►Communicate with your doctor about any herbal medications.
Tell your doctor about any herbal remedies you take regularly because they have pharmacological effects as well. Just because it’s “natural” doesn’t necessarily mean it’s good for you.
Reprinted with permission from DMRF Dystonia Dialogue, Spring 2023 Vol 44, No 1.