This article originally appeared in the Dystonia Dialogue.
“Even when we treat symptoms in dystonia, people are still sometimes left with bothersome symptoms, and they’re also dealing with more than just the physical symptoms that we can see,” explained Danny Bega, MD, neurologist and movement disorders specialist at Northwestern Medicine in Chicago. “A lot of patients with dystonia are dealing with non-physical, non-motor symptoms, whether it’s anxiety or sleep problems or pain. They’re trying fix all of their problems, not just the one problem, which makes sense.”
Living well with dystonia often requires a combination of treatment approaches. Available medical therapies such as oral medications, botulinum neurotoxin injections, and surgical interventions may be more effective for some people than others. In a study of 400 individuals with adult onset dystonia, researchers at University of Tennessee Health Science Center in Memphis found that 53% of patients reported using non-mainstream therapies, 90% reported receiving standard medical therapy, and 48% used both. Conversations about treatment options—both medical and non-mainstream—are constant at dystonia support group meetings and in online forums.
Integrative medicine is a blend of modern medical practices with non-mainstream approaches, often referred to as complementary or alternative therapies. These complementary therapies can include natural products (such as vitamins, herbs, and supplements), mind-body techniques (for example, tai chi, yoga, and relaxation practices), and alternative systems (for example, traditional Chinese or Indian medicine).
Dr. Bega often finds himself in conversation with patients about complementary therapies, which are among his research interests. “We don’t want people to think of these modalities as alternatives to Western conventional medicine, but rather something that should be used along with conventional medicine,” he explained. “Systems that should be integrated together, combined, and considered as a whole.”
Sarah Roers is among those who use a combination of therapeutic approaches. She was diagnosed with cervical dystonia about a year and a half ago. “Acupuncture, chiropractor, massage, tens unit, yoga, and especially Pilates help me with my CD. I also get botulinum neurotoxin injections every three months,” she said. “I think it is especially important to find really good practitioners in each field.”
Promises vs. Evidence
It can be a challenge for patients to find credible, accurate information on complementary therapies. The marketplace is full of largely unregulated products and services, available commercially and often promoted by slick advertising. How does a consumer tell the difference between a potentially safe and beneficial complementary therapy and a product or service that is being hyped irresponsibly? Or even fraudulently.
Jennifer Johnson was diagnosed with generalized dystonia in 2013. “I think that myself and those with dystonia are at very high risk of fraud and scams because dystonia often leaves us in pain and feeling hopeless about our treatment options,” she said. “We often have frustration with traditional medicine helping us, and therefore are vulnerable to scams and fraud that promise some help or relief.”
“Most of the things that are advertised, that sound too good to be true, are too good to be true,” said Dr. Bega, “and there’s a reason that doctors aren’t prescribing these things to all of their patients. It’s not because we want to withhold, it’s because these headlines are not accurate or they are overblown.”
He continued, “Decisions about treatment should be evidence-based, because there’s a lot of room for headlines to be misleading, for placebo results showing that something works, not because it actually works, but because there’s expectation of benefit. On the other hand, just because something doesn’t have evidence, that doesn’t necessarily mean it doesn’t work. It may not have been studied.”
Part of the growing interest in an integrative approach to medicine—not just in movement disorders but across disciplines—is to study complementary therapies with the same rigor that is applied to standard medical therapies, so physicians and patients have credible information by which to make treatment decisions.
A man with cervical dystonia whom Dr. Bega was treating with botulinum neurotoxin reported that the injections helped quite a bit, but repeatedly mentioned that acupuncture was making the biggest difference for him. Dr. Bega shared that unfortunately there was a lack of good studies on acupuncture in dystonia. “When I’m specifically recommending an integrative strategy,” Dr. Bega explained, “I’m looking for the actual evidence, just like I would with any other recommendation I make. So, I thought, why don’t we do a study?” Dr. Bega led a study in a small group of cervical dystonia patients comparing results from acupuncture in conjunction with botulinum neurotoxin injections and botulinum neurotoxin alone. Every participant reported improvement from the added acupuncture, including reduced pain. Many continued seeking acupuncture after the study ended. However, the rating scale measurements Dr. Bega used to assess severity of dystonic movements and postures remained the same. “We didn’t see a meaningful difference objectively,” he said. “It didn’t answer all of our questions, but it suggests that it may be worth studying acupuncture in bigger groups, in larger detail, to see if it actually can help with pain because the patients I’ve seen have said it does. I still can’t prove that it works. I can say that in those 10 people it was safe and well tolerated and they enjoyed it.”
Importance of Communication
Communication between patients and physicians is critical to crafting an individual treatment plan, especially when it comes to implementing complementary therapies. Physicians depend on candid feedback from patients regarding response to treatment and whether there are persisting symptoms that need to be addressed. Dr. Bega stressed the importance of rapport among doctors and patients: “It says something about your relationship with your physician if you’re afraid to tell your physician about things that you have questions about or that you’re interested in. Maybe you need to think about the comfort of that relationship and whether that’s the right physician for you. Patients should and need to be bringing these things up. Number one, because there might be an interaction that your physician needs to know about.” This is especially the case for vitamins, supplements, and herbs (including CBD and other medical cannabis products) which can cause adverse effects or interfere with medications. Mind-body techniques are generally among the safest complementary therapies, especially those with a meditative focus, but there may be individuals for whom certain practices or exercise are not recommended.
By training, movement disorder specialists are experts in the medical therapies that are proven safe and beneficial in dystonia: oral medications, botulinum neurotoxins, and deep brain stimulation. As physicians, their priority is the health and safety of patients, and this may mean carefully considering additional options commensurate with their knowledge and comfort. Dr. Bega summarized: “Hopefully you find a physician who’s willing to work with you and guide you into where you might find safe ways to learn more about these integrated practices, realizing that not everything that’s natural is safe, so it is important to discuss these things with your doctor and to be very cautious about miracle cures and headlines.”
Tips for Talking with your Doctor
Be open with your doctor about complementary therapies you are using or are interested in using.
• Tell your doctor about the specific symptom or issue you are seeking to address with complementary therapy.
• Tell your doctor how you learned about the product, service, or practice. If you learned about a potential therapy from an article, advertisement, or website, share the information with your doctor.
• Ask your doctor if the approach you are interested in poses any safety concerns.
• Ask your doctor if the approach you are interested in may interfere with existing treatments.
The National Center for Complementary & Integrative Health (NCCIH) is the federal government’s lead agency for scientific research on the diverse medical and health care systems, practices, and products that are not generally considered part of conventional medicine. NCCIH provides information, including available data on various complementary therapies and tips on how to be an informed consumer.
The US Food & Drug Administration (FDA) defines health fraud as the deceptive sale or advertising of products that claim to be effective against medical conditions or otherwise beneficial to health, but which have not been proven safe and effective for those purposes. Be aware of these indications of potential fraud or false claims:
• Claims that a product is a quick, effective cure-all, or diagnostic tool, for a wide variety of ailments.
• Suggestions that a product, service, or technique can treat or cure diseases.
• Promotions using words such as ‘scientific breakthrough,’ ‘miraculous cure,’ ‘secret ingredient,’ and ‘ancient remedy.’
• Impressive-sounding terms that are meaningless nonsense, e.g. ‘cellular hyperstimulation point’ or ‘deficient interneurological synthesis.’
• Dramatic, unsubstantiated testimonials by consumers claiming amazing results.
• Limited availability and advance payment required.
• Promises of no-risk, money-back guarantees.
• Claims that the product is natural or non-toxic. This does not always mean safe.
• Claims that the medical community is not aware of a therapy, or is withholding a therapy from patients.
Professional-looking websites or apps are not always legit. Avoid websites or apps that fail to list a company’s name, physical location, phone number, or other contact information. Additional information about protecting against health fraud is available from the FDA .
The Dystonia Medical Research Foundation is a 501(c)(3) non-profit organization dedicated to advancing research for improved dystonia treatments and ultimately a cure, promoting awareness, and supporting the well-being of affected individuals and families.