Cervical Dystonia FAQs

All about cervical dystonia

This is an FAQ for cervical dystonia only, the most common form of dystonia. As a disclaimer, we are not a doctors and this isn’t medical advice – this is information you should use to work with your doctors. Please look at the Dystonia Medical Research Foundation website for more info on all types of dystonia: https://dystonia-foundation.org/

All about cervical dystonia

1. Are there diagnostic tests to confirm cervical dystonia (also called spasmodic torticollis)?

No, it’s diagnosed through clinical examination. A doctor will listen your symptoms, look at your head position under various circumstances, and might even palpate/feel around your neck and shoulder muscles.

The best doctor to diagnose and treat you is a neurologist specifically trained in movement disorders. These doctors also help people with essential tremor and Parkinson’s disease, and will likely rule out those disorders in the exam. Seeing a general neurologist for dystonia is not recommended.

They may order a brain MRI to rule out other issues, but brain MRIs for people with primary dystonia (that is, dystonia not caused by another condition, the most common type) appear normal.

Find a movement disorder specialist near you via the Dystonia Medical Research Foundation’s doctor directory search: https://dystonia-foundation.org/directory/categories/find-a-doctor

2. How do I know it’s cervical dystonia and not something else?

A neurologist, specifically one specializing in movement disorders, should evaluate you and can tell you for sure.

You could seek a different opinion by going to a doctor who deals with muscular and skeletal conditions, such as a physiatrist (PM&R doctor) or an orthopedist. At the very least, you can try to rule out other issues.

One clue of cervical dystonia is if symptoms stop when you’re asleep. Your brain partially shuts off when you’re sleeping and CD originates in the brain, so many people find CD disappears when they sleep.

Another telltale sign is the effectiveness of a sensory trick or “geste antagoniste.” This is when a simple touch or “alleviating maneuver” causes your dystonic muscles to stop or reduce contractions. Like touching your cheek, holding your chin, resting your hand on your forehead, etc. The key is that the gesture itself would not be strong enough to counteract the muscle movement.

Other things may stop symptoms with no apparent explanation – some people with CD report juggling makes their symptoms stop. Anecdotally we’ve seen people who found brushing their teeth or having a lollipop in their mouth stopped it. Some people find dancing shuts off CD too. Resting your head gently on the back of a chair may stop the pulling.

Not everyone with dystonia has found a sensory trick, but if you have a sensory trick, it probably can’t be something other than dystonia. It can also be helpful to figure out if you have one as it can help you manage your CD in certain situations. (I found mine after about a year – I was hot so I took off my sweatshirt, folded it and put it on my head, and I realized the weight on top of my head caused my pulling and neck tension to greatly reduce.)

3. What causes cervical dystonia?

Most of the time, CD that starts in adulthood is “idiopathic,” which is the scientific term for “we don’t know what causes it.” It’s the most common type and what this FAQ is primarily focused on.

A lot of people have origin theories and blame a car accident, a fall, a concussion, whiplash, an illness, an infection, stress overload, a traumatic event, a prescription drug, an over-the-counter medicine, a surgery, a vaccination – you name it, and people blame it. (I even saw someone try to blame tapeworm, yikes!) No one at r/Dystonia can tell you why you got CD.

Which is all to say, no one knows, but that doesn’t stop people from trying to draw conclusions based on the timing of events in their lives. Some studies have found people who develop cervical dystonia after stressful events are more likely to go into remission than others, and they lend more credibility to the theory of excessive stress overload being one possible trigger.

What we do know that it’s not a mental illness or “all in your head.” Stress can make CD worse, and some people believe stress is what triggers it in the first place, but it is neurological and related to the function of the brain.

(Not to complicate things, but there is one form of cervical dystonia that is considered psychogenic or psychological – it’s labeled “functional dystonia” or a “functional neurological disorder,” as opposed to true, organic cervical dystonia. It’s explained at the end of this part of the FAQ in the last couple of questions.)

The consensus among scientists and researchers is, for idiopathic cervical dystonia, it’s some combination of genetics and environmental triggers. You have to be pre-disposed in the first place, and then some other things would need to happen. As the saying goes, “genetics load the gun but the environment pulls the trigger.” In really simple terms, scientists think it has something to do with the basal ganglia region of the brain and communication networks getting messed up between this part of the brain and muscles.

Scientific research is still trying to pinpoint the exact mechanism of how and why dystonia happens in some people and not others, which will hopefully lead to better treatments or a cure. Support medical research into the brain however you can!

In rare cases, there’s a known cause. Dystonia can be genetic, but most people who get cervical dystonia as an adult would not test positive for a known genetic mutation (and people who test positive don’t necessarily develop dystonia either). Genetic dystonia often affects more than the neck, starts before adulthood and/or runs in families, so you’d have clues that tell you it’s genetic.

Dystonia can also be secondary to another disorder and developed later on, like in Huntington’s disease or Parkinsons disease, but dystonia in the neck is generally never the first sign of these diseases. Antipsychotic drugs are known to rarely cause dystonia as a side effect, so if that’s the cause of someone’s dystonia, treatment will be tailored to that rare cause. Here is a list of some known causes of secondary dystonia but you’ll see most start in childhood.

4. Is there a cure?

There’s no cure yet, but treatments do exist.

It can be disheartening to learn you have something that has “no cure” and newly diagnosed people tend to fixate on this. Some falsely take it to mean that cervical dystonia can’t be managed and it will never get better. This creates a very negative mindset that can cut you off from improvement and even remission because, if you believe you need a “cure” then you may never bother doing the things that help you manage and treat your dystonia.

It’s worth remembering that most diseases and conditions are not “curable” but are merely treatable or manageable. Lots of common chronic conditions like type II diabetes, thyroid disorders, GERD, various types of arthritis, fibromyalgia, lupus, hyperhidrosis (excessive sweating), celiac disease, etc. also have no cure – people have to make daily lifestyle changes and/or take medicine daily to treat them and they have to continually monitor these conditions. Someone with back problems might have surgery that eases their pain, but they aren’t cured either – they likely have to continue to manage their back problems with physical therapy, drugs and avoiding certain activities. A condition being incurable doesn’t mean it can’t be managed with treatment and lifestyle modifications, and it doesn’t mean you can’t still live your life.

***Anyone promising a cure is lying to you, especially if they are the ones who stand to profit. There is no credible evidence that certain proprietary supplement blends, or expensive dental devices, or other snake oil “cures” stop CD. The best, proven treatments are outlined below in this FAQ.

5. Can it go away?

It could or it could not. Remission isn’t unheard of, but it’s also not common. When remission happens, one study found it’s usually within the first 5 years of onset. The same study put the rate of complete remission for cervical dystonia at 15%. Partial remission is also possible.

Usually if someone does go into remission, it eventually comes back – it can be months or years later. What causes remission is not clear. One study suggested remission is more likely after retiring, pointing to stress reduction as a factor. Younger people also tend to be more likely to go into remission, but anecdotally it’s seen at any age.

Whenever I come across someone who says their CD went into remission, I always asked how they did it, and there’s no one thing everyone does. Some people believe botox injections led to their remission. Some say improving diet, hydration and exercising helped. Some say meditation and/or guided meditations, or removing stress from their lives did it. Some cite daily walks or hikes. Others credit physical therapy programs for cervical dystonia. Some, however, admit they don’t know. Some people’s remission lasted as long as 20+ years, but some were only several months. I haven’t formally tallied, but I’d say the most common reasons I’ve seen cited relate to things that reduce stress, like meditation, exercise and specifically avoiding stressful situations, along with botox, belief that improvement is possible and a positive attitude.

Some people manage CD well enough with botox that it’s like remission in that as the botox wears off, the symptoms aren’t as bad as they were initially and they can go longer between treatments, so a steady of schedule of botox has a cumulative effect and keeps the condition at bay and they stay symptom-free. While this may not be the typical outcome of botox, it is possible. But botox can take a few rounds to work – please see our botox FAQ for more insight.

6. Will cervical dystonia get worse?

CD is expected to plateau, but until then there is no set course for everyone. In some people it stays the same, for others it gradually gets worse, in some people it gets worse very quickly before getting milder. There are plenty of people where it starts mild and stays mild. Similarly, for people being treated with botulinum toxin injections: Some will stay at the same dose of injections for years or decades, some will find their dose needs to increase slowly over time, and some will find they can get less injected and/or less often than they used to.

The medical consensus is that from adult onset, cervical dystonia could get worse for a few years before it plateaus. Once it’s been the same for a while, it shouldn’t get any worse. It is not considered progressive, which is when a disease keeps getting worse forever.

One study that looked into the natural course of idiopathic cervical dystonia (ICD) – both sudden cases after an emotionally traumatic event or gradual with no suspected cause – over a course of as long as 17.5 years, said this: “Our data clearly show, that both ICD-types are non-progressive. For patient counseling, we assume no major further deterioration once ICD has been stable for two or three years. This is important information for patients, as most of them intuitively assume a chronic progressive course similar to other neurodegenerative disorders such as Parkinson’s disease or Alzheimer disease.”

Anecdotally, some people report their CD getting worse during or after a very stressful period, traumatic event, or illness. So, adhering to techniques to reduce stress and stay healthy may be important for long-term management. One study found that stress levels and severity of cervical dystonia are correlated.

Anecdotally, you can find people who have had every experience: remission, constantly getting worse, and everything in between. But usually, it seems to progress slowly for a bit and then plateau.

It’s also important to note that CD doesn’t affect life expectancy. Having cervical dystonia might be a literal pain in the neck to deal with, but it won’t kill you.

CD in adults tends to stay limited to the neck area. It’s not unheard of for it to spread, but studies show that would be unusual as the vast majority of cases stay limited to the neck. Multiple studies have found cervical dystonia spreads in less than 10% of cases (1, 2, 3, 4).

7. Can I work, drive and live a normal life with cervical dystonia?

It depends on the severity of your condition and/or how well you respond to treatment – there is a broad spectrum of how dystonia affects people. But in most cases the answer is yes, you can live a normal life.

If you search around forums /r/dystonia like I did when I was first diagnosed, you are bound to see people who are having a hard time or even disabled from having CD – people who can’t drive because they can’t look at the road, or can’t work because they are in too much pain, etc. This, of course, really scared me. But now that I’ve had this and researched it obsessively for a while, I’d say this is not the norm and forums like this are self-selecting: the people having the worst time tend to post here, and the people who are doing ok usually don’t post here much.

That’s not to say that CD isn’t disabling and debilitating for some – there are people who will go on disability and be unable to work. But sometimes looking at stuff on the internet can make you feel like it’s the vast majority of cases because you’re not seeing all the people managing fine and not talking about it on the internet. Since this is a relatively rare disorder that most people have never heard of, that probably makes it even likelier those who are managing their CD aren’t talking about it publicly much.

It’s not uncommon for people to post on Reddit when they are first diagnosed or first starting treatment, and then once the treatment clicks, they never post again. And there are many types of dystonia – you don’t always know if a person posting here has a more or less severe form than you, how long they’ve had it, what treatments they tried or not, if it’s generalized beyond the neck or not, other health issues, etc., which makes trying to compare your situation to anyone else’s you read difficult. This forum can be helpful, but I’d caution against comparing yourself to others too much.

That said, we often get people posting threads on /r/dystonia asking if other people with cervical dystonia drive or work, and the vast majority of the responses are always yes.

Having CD can impact your life in different, smaller ways. You may find when you go out to dinner with friends, you’ll want to sit on certain side of the table because it’s easier to turn your head to look in one direction than the other. You may find when you travel you’ll want to bring a specific pillow with you to support your neck. I bought a new office chair with a head support so I could rest my head on it, which reduces the feeling of pulling. You may find it becomes much more important to reduce stress, take rest breaks, say no certain things, prioritize sleep and take other steps to avoid flare-ups.

You may need to adjust certain things in your life, depending on the severity, but it usually shouldn’t stop you from being able to live a relatively normal and full life, unless mental aspects of having it, like depression and anxiety, get in the way. I personally know some people with CD who run marathons and they have not let a CD diagnosis stop them from doing all the things they used to do. Dystonia, or any chronic condition, can take everything from you if you let it – but if you resolve to manage it and live a normal life, odds are you will do so. Positivity goes a long way!

A recent study in Wales looked at all cervical dystonia patients in the country over the course of 23 years and found lifetime “deprivation” (a measure of income, employment, housing and disability) did not worsen after a CD diagnosis. In other words: people with CD live normal lives.

8. What is the best treatment for cervical dystonia?

There is no single treatment that helps everyone with CD in the exact same way.

Botulinum toxin injections: The first-choice treatment is regular botulinum toxin injections into the overactive neck muscles because of its high success rate and low side effects. People refer to it as “botox” but there are multiple brands approved for CD injections: Botox, Xeomin, Dysport, Daxxify and Myobloc. (As this treatment is the gold standard for CD, we have an FAQ covering every aspect of these injections below.)

Oral medications: Some people are prescribed oral medications. These medications can have side effects in adults and tend not to work as well as botox, so they are not considered a first-choice treatment in focal dystonia (which is dystonia that affects one part of the body), but they can help too. Some oral meds include:

Baclofen – a type of muscle relaxer. Some people with severe cases can have a baclofen pump implanted instead of taking it orally.
Muscle relaxers (tizanidine, cyclobenzaprine, methocarbamol, etc.)
Anticholinergics (Artane/trihexyphenidyl)
Benzodiazepines (Klonopin/clonazepam, Ativan/lorazepam, Valium/diazepam) – This class of drugs is commonly used for anxiety but can also act as muscle relaxers. High risk of dependence so tread carefully and take as prescribed. Clonazepam tends to be the treatment of choice.
Dopamine (Sinemet/levodopa) – only for people with dopa-responsive dystonia, or DRD. Usually, DRD starts in childhood and/or affects limbs, so most idiopathic adult onset CD (the most common type), would not respond to dopamine. But can be worth a try.
This is not an exhaustive list of medications that may be prescribed.

DBS surgery: In cases where botox or oral meds don’t help, someone might be selected as a candidate for DBS, which is Deep Brain Stimulation surgery. Electrodes are implanted into the brain and connected to a pacemaker-like device implanted into the chest. Your neurologist would tune the device’s signal over the coming months to find the optimal setting to block the brain signals triggering the dystonic muscles. This surgery can be done completely under anesthesia, or it can be done partially while you’re awake communicating to doctors.

This procedure seems to have a good record of helping people without major complications, but it is a brain surgery so there is a risk-reward threshold that makes it an option for only severe cases that don’t response to other treatments. This surgery can have side effects, but it can also be undone to an extent where the electrodes and device are removed, or the programming device is turned off. This surgery is widely available as it’s also a treatment for other conditions, especially essential tremor and Parkinson’s disease. Certain manifestations of dystonia make someone a better or worse candidate for this. The results from DBS can range from complete improvement, to some improvement where botox is still needed at lower doses, to minimal improvement – your doctors can tell you if you are a candidate for strong improvement or not, and explain possible adverse effects to you.

If you’re considering DBS, this Facebook group is a good resource: https://www.facebook.com/groups/dbs.dmrf

Denervation surgery: A less common surgery is selective peripheral denervation, where the nerves to specific neck muscles are cut and some muscles are removed. That will cause the muscles to stop contracting, and is for the most part permanent. (Nerves can grow back but muscles can’t.) This surgery is far rarer compared to DBS. Anecdotally, in the U.S. I’ve only heard of the Mayo Clinic in Minnesota performing it (Dr. Spinner). It previously was performed by a doctor in Jacksonville, Florida, but he has since retired (Dr. Arce).

Like DBS, this is an option for people who don’t respond to botox, medication or other treatments. There are also certain types of CD where this surgery is more or less likely to be effective, but it can be a game-changer, the same way DBS can. Some more info is here. This surgery can have side effects or not work, just like DBS, and you’ll need to discuss with your doctor possible adverse results.

Other remedies: Some people find other things helpful, including:

Physical therapy (see below)
The Farias technique/Dystonia Recovery Program (see below)
The ST Recovery Clinic (see below)
Dry needling
Trigger point injections
Therapeutic massage
Acupuncture
Cervical radiofrequency ablation (if in pain)
Healthy diet/avoiding caffeine and sugar
Hydration/drinking plenty of water
Exercise/dancing
Marijuana/CBD
Meditation/mindfulness
Kinseotaping
Various supplements
Even wearing a hanger on your head

and more! The treatments you seek may depend on the symptoms you have, whether it’s head position, tremor, tension or pain. Here’s a list of products people find useful, sourced by our community.

Dystonic movements typically get worse with anxiety, stress and fatigue, and they get better with relaxation, and usually disappear during sleep, so managing stress and living a healthy lifestyle are helpful for managing CD. One study found that stress levels of severity of CD are correlated.

A minority of people find alcohol reduces their symptoms – one study found it’s more likely to help people with tremors, and people who have a family history (likely genetic). This may provide clues into new treatment options and is being researched. Anecdotally, some people say alcohol helps them in the moment, but makes their dystonia worse the next day. Some find alcohol just makes their CD worse.

***Be wary of anyone promising a cure, especially if they are the ones who stand to benefit financially. There is no credible evidence that certain proprietary supplement blends, or expensive dental devices, or other snake oil “cures” stop CD.

*Also, exercise extreme caution if you are interested in chiropractic adjustments. Many people report finding it makes their symptoms worse, and many chiropractors lack knowledge of cervical dystonia, which is not the same as as mere stiff or strained neck. You can ask your neurologist first, but seeing a chiropractor is usually not recommended because people with dystonia don’t respond to adjustments the same way people who have more common issues. That said, some people with CD say gentle chiropractic helps them – just be careful.

Research is being done into other treatments, like “high-intensity focused ultrasound,” which is an alternative to surgery, as well as new botulinum toxin formulations. There’s also ongoing research into medications that show promise and are going through clinical trials. You can learn more about some of the research here: https://dystonia-foundation.org/research/

Last but not least: An often-overlooked part of treating dystonia is the mental health aspect. Any treatments that can prevent or reduce anxiety and depression are also important in helping you manage dystonia. Your mental outlook and attitude will heavily influence how CD affects you.

9. How well do botox injections work? Side effects? How quickly do they help? How do I pay for them? Etc.

Oh, you need our botox FAQ, where we cover all those questions and many more to help you get the most out of your treatments. You can head over there now: https://cervicaldystoniafaq.wordpress.com/botox-faq/

10. What kind of physical therapy should I do?

You should consider doing physical therapy, even if you are getting botox injections. Many studies indicate that doing PT in between botox injections can make them last longer (1, 2, 3). One study of PT for cervical dystonia patients found almost all of the patients who added PT benefitted, with an average reduction in pain of around 50% – but this study did not prescribe specific exercises, instead letting patients choose their own PT protocols.

Indeed, there are a lot of different approaches you can take to incorporating “physical therapy” into your treatment. While studies repeatedly show PT can be beneficial to people with CD, these different studies each tend to look at different types of PT, or might include more than one PT modality at the same time. The truth is, there is not enough research to definitively say one approach to PT is better compared to the others. Since this condition is highly individual anyway, you should see what seems to work for you. One of the oldest forms of PT for dystonia involves doing stretches and movements in front of a mirror to maintain normal posture to retrain the brain. But here are some modern researched forms of PT:

Proprioception and sensorimotor control: In some people, CD can affect your cervical proprioception, which is your awareness of where your head is in space and how it is oriented to its surroundings. Proprioception can also be referred to as “joint position sense.” Studies show that proprioception and sensorimotor control can be improved with exercises and repetition. These exercises often involve wearing a laser on your head aiming at a target to try to reduce “joint position error.” The studies below looked at people with any chronic neck pain and stiffness, not specifically CD.

One study looked at people with neck pain who also had poor cervical proprioception. One group did PT designed only to strengthen the deep neck flexors including chin tucks, and another group did PT focused only on proprioception training using a laser headlamp. After six weeks, both groups showed a reduction in pain. Both groups also showed improved proprioception but the group that did the headlamp exercises improved more.

Another study looking at people with chronic neck pain had similar results. One group did range-of-motion stretches in all directions with the neck. The other group did eye exercises and chin tucks. Both groups improved in measures of proprioception, pain and disability.

And another study looked at people with neck pain who performed poorly on joint position error tests. It had them do a regime of basic balance exercises, including standing on one foot and using a wobble board while moving their eyes (not their head) or with eyes closed. After five weeks of the program, joint position error was improved and neck pain reduced.

Dystonia-specific PT programs: There are two popular programs that were created by people who have been afflicted by dystonia themselves. Neither of these programs offer cures and neither were developed by medical doctors. There is no research into these specific programs, but they do include some traditional elements of PT that have been researched. Results vary – some people in CD support groups credit these programs with helping them and drastically improving symptoms, while others don’t gain the same benefit.

The first is the Spasmodic Torticollis Recovery Clinic started by Abigail Brown, who has had CD most of her adult life, according to the bio she has shared. She came up with her own set of stretches, exercises and massages to help her control her symptoms, which is the basis of the program she created for other people. For a one-time fee, you can order the “long-distance program,” which is an electronic manual for her approach as it appears her in-person program is no longer offered.

The second is the Dystonia Recovery Program created by Joaquin Farias. He says he developed musician’s dystonia in his hand when training to be a professional musician. (He does not have CD, but his program offers individualized courses for all types of dystonia.) His bio says he later earned degrees in neuropsychological rehabilitation and biomechanics. His program involves stretching, but also dancing classes, relaxation guides for deep breathing and meditation, and well as eye exercises he says promote neuroplasticity. This is an online subscription paid monthly, and videos on the website unlock weekly. He also does in-person workshops. (This unofficial FB group may be of interest.)

A third option worth considering is Re+Active Physical Therapy’s online dystonia program, which was started by Julie Hershberg, a certified neurological physical therapist. Re+Active is based in Los Angeles and is a good option for those who can go in person – they have a lot of experience in neuro PT and also offer occupational therapy, neuropsychology, yoga and more for a well-rounded approach for a range of neurological conditions. Re+Active offers a dystonia guide for physical therapists too.

What not to do: Some people report going to PT made their symptoms worse, probably because it was the wrong kind of PT. If you do sessions with a physical therapist, it’s important the trainer has experience or knowledge of CD. If they give you any old neck exercises, it could be counterproductive. You do not want to strengthen your dystonic muscles, and you don’t want to agitate them by over engaging the neck and traps. Do not push yourself to do anything painful or that you feel makes your symptoms worse. Everyone is different, but many people with dystonia don’t tolerate explosive or ballistic movements, or high-intensity training.

Ideally, you should look for neuro rehab or neuro PTs. If you can’t find any near you, Re+Active might be able to help you find a neuro PT near you, starting here.

It’s also worth a reminder: Physical therapy tends to be a long-term, daily commitment. It’s not something you do sporadically or do for a bit and then drop entirely. Improvements happen gradually.

11. Is there anything for tremor other than botox, medication or DBS?

Botox can and usually does help with tremor, but can sometimes be harder to address than head position and pain, so you may need to look for the right doctor to treat you. (See the botox FAQ to understand why.) Oral medications can also help with tremor, and your movement disorder neurologist can prescribe the right ones for you.

Your mileage may vary, but I’ve seen testimonials from people who found acupressure and deep massage on the back of their neck helped with their specific tremors: 1a, 1b, 2. In these cases, a gua sha massage tool may help.

Whether or not this can help you, it’s just a reminder that different things can help everyone, so it’s worth trying stuff. While botox injections are the first choice, that doesn’t mean they are the only choice, and many people do more than just one thing to keep their symptoms under control. For instance, if botox helps with 70% of your symptoms, physical therapy could help another 5%, massages could help another 5%, medications could help another 10%, and then you’re at 90% relief. That’s a great outcome.

12. What about anxiety and depression?

Studies show that people with dystonia have higher rates of anxiety and depression than the rest of the population. Studies also show that these symptoms aren’t necessarily correlated with severity of the condition, either.

No one wants to find out they have any sort of chronic condition, and the hardest period is early after diagnosis before any treatments have had a chance to help and before you’ve learned how to manage it. Taking it one day at a time and not catastrophizing the future is key. You can find all types of dystonia-havers on social media – people with CD who are really miserable and struggling, or people who are living normal lives and happy, but the first category tends to be far more vocal and visible, particularly in support groups. If it’s not helping your mental health, stay off social media.

Treating CD is not just about treating the muscle tightness or spasms or pain – paying attention to your mental health is just as important and will be key for managing your dystonia. Studies show it’s the mental health aspect of dealing with CD that has the biggest impact on quality of life, not how severe the presentation of the dystonia is.

One study found that the biggest determining factor of disability in people with cervical dystonia was not objective physical measures like how strong the muscle pulling is, how many muscles are involved, the degree of rotation or tilt — no, it was the psychiatric features of the patient. The most important thing you can do is prioritize your mental health and find the best ways for you to cope and thrive with CD.

With that in mind, as you look at botox and other treatments, add mental health treatments to your plan. Sometimes benzos are prescribed for CD for their muscle-relaxing properties, which can also help with anxiety, but these drugs have a high risk of dependence you should be aware of. Consider adding talk therapy, meditation, and steps to build your support network. Diet and exercise can play a big role in mental health too. Try adding mindfulness or spirituality to your daily routine.

All in all, taking proactive steps for mental wellness and having a positive outlook tend to bode well for those with CD. After all, worry and stress only make dystonia worse. In rare cases, some people say eliminating stress made their dystonia go away.

So, don’t neglect your mental health and focus only on your neck tension or pain. A positive attitude and prioritizing mental health can go a long way.

(A personal word of advice for anyone who is really struggling: you can live well and be happy with cervical dystonia. Repeat that to yourself. If you believe that the key to happiness is getting rid of your CD, you’re setting yourself up for anxiety and depression. But if you can accept that it’s possible to live a normal life even though you have CD, then you probably will live a normal life. You can believe in the possibility of remission and take steps for it, but in the meantime accepting you have this condition and your life isn’t over is very important – it’s the only way to truly move forward.

Open your mind to at least the possibility that you can still be happy with CD. At least entertain the thought and sit with it. Let yourself wonder if maybe CD can teach you some things and help you find new appreciation and better meaning in life. For me, changing my mindset “I’ll only be okay if this is gone” to “it’s still possible for me to live a meaningful, joyful life even with this here” was a game-changer. Healing and being at peace is not going to come from a magic pill or overnight cure – it’s going to come from your mental outlook and attitude. If you believe you can be happy even if you have CD, you probably will be happy either way.)

13. What should I not do?

Cervical collars: Some people are tempted to wear cervical collars, neck braces or neck pillows to hold their head straight. It may help in short-term or one-off scenarios, but over the long term, this would be expected to weaken the non-dystonic muscles, which will not be used due to the collar, and the dystonic muscles will become comparatively even stronger because they never relax, even in the collar. You want to keep your non-dystonic muscles strong. Again, you can use these collars sparingly, but you should avoid relying on them.

Scams: Don’t fall prey to scams and miracle cures. As there is no cure for dystonia and it’s a highly individual condition, there are scammers out there that will sell cures, knowing that people with dystonia are willing to try a range of treatments in case they help.

If someone is asking you to pay hundreds or thousands of dollars to give you a dental device, that should raise questions for you: If this works, why is there not repeated research to back it up? Why don’t all dentists offer these services that would help people while also earning the dentists money? Would a cheap mouth splint do the same thing and would that be a more logical place to start? Is there anyone in the CD community that has been helped by this – any real people you’ve come across and/or interacted with? (You can find promo videos uploaded by these dentists showing testimonials, but I personally have never come across an actual person with CD who said this cured them.) Do your own research.

Also, there is no magic combination of propriety supplements and herbs that will cure dystonia either. Some people swear by certain supplements helping reduce their symptoms, like magnesium, B12, omega-3 and others. But these are supplements you can buy anywhere. Anyone telling you their supplements are special or you can only buy a specific brand are scamming you.

Negative mindset: Don’t assume the worst and that treatment won’t work for you. Having a defeated, negative attitude is probably the worst thing you can do with this disorder. The opposite attitude will put you on a path to living well.

Studies are very consistent that CD plateaus where it doesn’t get any worse, and the available treatments help the vast majority of people manage having the condition. So, you can expect to get it to a manageable place and for it to stay manageable. Keep living your life.

Studies also show remission is possible, so it doesn’t hurt to have optimism. But at the same time, it’s important to remember that it is possible to live well with this disorder too, and remission isn’t a requirement for thriving. Stress and anxiety make dystonia worse, so don’t create a self-fulfilling prophecy. The people who believe they will be OK are the ones who are OK.

14. Does cervical dystonia cause [insert health issue/symptom]?

If you ever experience any new or concerning symptoms, talk to your doctor. Don’t just assume dystonia causes them. In various CD supports groups, it’s easy to come across people who assume every health problem they have is from dystonia, so they end up not getting diagnosed or treated with the actual problems they have.

I’ve seen people blame CD for everything from sinus issues to acid reflux to gastrointestinal problems to spinal stenosis, when none of these are symptoms of CD, and all of these are common conditions in the general population. In some of these cases, if people did mention these issues to a doctor, they only mentioned it to their movement disorder neurologist who does their botox, instead of mentioning it to a doctor who can actually diagnose and treat the issues.

For instance, I’ve seen some people swear they would stop getting botox, blaming it for their heartburn symptoms, when all they needed was to take something for GERD, an extremely common condition. There are a lot of problems that become common in the general population as humans age – don’t self-diagnose or automatically ascribe all your health issues to CD.

The main symptoms of CD are the ones you’re probably already familiar with: muscle tightness and tension (everyone with CD experiences this), the abnormal head position and pulling (most experience this), pain or aches (many experience this) and tremors (some experience this).

Some people do find their head position being off can lead to some balance issues or dizziness, but physical therapy and balance exercises can help significantly. (See our section on PT here.)

Still, balance issues or dizziness are very common in the general population and can be related to vestibular issues, dehydration, poor nutrition, certain medications, poor sleep or even anxiety, and those causes should be explored. Most people with CD don’t have any balance issues or dizziness, so again, don’t assume the cause or the solution without seeing a doctor and exploring other possibilities.

15. Where else can I connect with people who have cervical dystonia too?

Find a local support group in your area: https://dystonia-foundation.org/living-dystonia/support-groups/wpbdp_category/support-groups/
Cervical dystonia Facebook group: https://www.facebook.com/groups/395082423848448 (Be wary of baseless information there – their mods don’t do a very good job and there are a lot of uneducated, clueless people over there. But when you need to ask questions about the experiences of fellow cervical dystonia-havers, it’s a good resource.)
And of course, /r/Dystonia, the group this FAQ was made for.

16. Could I have “functional” dystonia? How do I know?

One thing that can be confusing when trying to understand dystonia and treatments is that there is a form of dystonia that looks like typical dystonia to the untrained eye, but is a condition of a different origin requiring different treatments that mimics typical cervical dystonia. It’s called “functional dystonia” or “functional cervical dystonia,” which is a type of functional neurological disorder or FND.

Classic idiopathic cervical dystonia, which is sometimes called “organic” or “true” cervical dystonia, is a neurological issue coming from the brain. This is the type of dystonia this FAQ is about, and the most common type of dystonia. The communication networks between the brain and the muscles get disrupted, resulting in faulty signals, which cause muscles in the neck to contract when they shouldn’t. Although the brain MRIs of people with cervical dystonia will look normal to the human eye, researchers suspect there are subtle structural network changes that occur that an MRI doesn’t pick up. It’s a hardware issue.

Functional cervical dystonia, which is a type of “functional neurological disorder” (FND), is believed to be psychogenic in origin. There is no structural issue that could explain the symptoms. It doesn’t mean people with FND are making it up – the symptoms are real – but they are not coming from an organic, physical cause. Rather, it exists in a gray area between psychiatric and neurological. It’s a software issue.

So how can you tell the difference between the two?

People with typical true, organic dystonia will usually find their symptoms come on gradually over time. Meanwhile, people with functional dystonia or FND will find onset is very abrupt or progresses extremely rapidly.
People with organic CD will consistently have the same pulling, in the same pattern, with the same muscles involved. People with functional will have inconsistent patterns involving different muscles at different times, and it may even shift around.
The same is true of those with tremors. True dystonia will have a consistent, predictable pattern and rhythm. In functional, the rhythm of the tremors is highly suggestible and can change (called “entrainment”).
Typical CD can be better controlled when focused on and with a deliberate effort to suppress the movements – but with distraction, the movements are worse as they go unchecked. It’s the opposite in functional: their symptoms are worse when they think about them, but when they are distracted, the symptoms are less and can even disappear completely.
Another possible sign of functional may be extreme pain that is out of proportion with the movements. Pain can be a sign of typical CD (although it’s perfectly normal to have CD without pain, too), but the pain in functional can be extreme.
In organic CD, a hallmark is muscles that persistently contract and are unrelentingly firm to the touch, even when the head is moved into positions where that muscle should not be activated. Functional won’t have these dystonic muscles that refuse to relax.
Another possible sign of FND is a presentation including symptoms that are not classic for dystonia, such as tics, seizure-like episodes, issues with gait (walking), muscle weakness, hypersensitivity to light/sound and other symptoms associated with FND but not associated with dystonia.

As you can see, organic and functional dystonia can present some similar symptoms, but in different ways. A good movement disorder neurologist who takes the time to properly evaluate you will be able to tell the difference. You should always get another doctor’s opinion if you aren’t confident in your diagnosis. While FND (all types) is more common than dystonia (all types), “functional” cervical dystonia is much less common than the “true” cervical dystonia. (It is possible to have both types at the same time, which is uncommon, but again that’s why it’s important to find an experienced, knowledgable doctor who can thoroughly evaluate you.)

Perhaps the most important thing to understand is that the treatment for functional dystonia/FND vs. true, organic CD is different.

In organic CD, the best treatments deal with the physical symptoms. Botox injections are the most successful treatment and help the vast majority of people, but oral medications, physical therapy and DBS surgery are also viable options. For functional/FND, treatment focuses on the psychogenic origin: talk therapy/psychotherapy is highly recommended and even hypnosis can also help, along with physical therapy (PT) and occupational therapy (OT).

There can, of course, be some overlap in treatments. Talk therapy can also help those with true CD too because stress and anxiety exacerbate CD, and reducing stress and anxiety are proven to help organic CD. Anything you can do to calm and regulate your nervous system and reduce stress will help you if you have organic CD too. Physical therapy can also be a benefit to both types. But botox, the first-choice treatment for organic CD, often does not help people with functional dystonia. If botox does help someone with functional, it may happen immediately, before the botox chemically could’ve done anything, as a placebo effect.

17. Can I be cured by hypnosis/seeing a “functional neurologist”/TMS/(other treatment)?

I’ve noticed people in support groups sharing their “success stories” and getting people’s hopes up, so I wanted to specifically address this. To do so, it’s critical to understand difference between functional dystonia and organic dystonia.

Please read the previous question on “functional” dystonia (a type of FND) to understand the difference between organic and functional dystonia – it’s key for understanding why you may sporadically come across stories of people seemingly “cured” from methods that aren’t being recommended by movement disorder neurologists for dystonia.

TMS is a good example. It’s worth pointing out that treatments that help mental conditions are more likely to help with FND, so it may explain why TMS (Transcranial Magnetic Stimulation), which is used for depression, can also help people with functional dystonia. (TMS may hold promise for organic dystonia too – different types of TMS are still being researched for organic neurological disorders including dystonia, Parkinson’s, migraines and MS – but it’s not proven yet. Trials are ongoing.)

Another important thing to explain: “Functional neurologists” are not neurologists and they don’t hold medical degrees. Rather “functional neurologists” are typically a type of chiropractor, not a medical doctor. For people with FND, a functional neurologist may potentially be a good option. For those with organic CD, such methods are not proven and are unlikely to help. So, when you come across testimonials and promises from functional neurologists, keep in mind that their treatments may not fit your actual diagnosis.

Ultimately, dystonia can be complex and highly variable, so no one can speak in absolutes about what will help you and what won’t. But before paying for expensive “functional neurology” programs, hypnosis or TMS, you should make sure you understand your own symptoms and your own diagnosis and seek opinions for experienced, qualified doctors. When you see other people sharing info about what treatments helped them, consider whether or not your CD is the same as theirs. Functional cervical dystonia is a less common presentation compared to organic CD, and most people who have CD have the organic type.

Last updated:

March 16, 2026