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10 Frequently Asked Questions about Dystonia

Medically reviewed by Sandeep Dhanyamraju
Medically reviewed by Sandeep Dhanyamraju

Are you worried about the possibility of experiencing dystonia? If so, you likely have many questions about what dystonia disease is, what causes it, and how to cure it. These are all common concerns for those who experience this neurological disorder

 

Dystonia is a neurological disorder involving prolonged muscle contractions and abnormal postures. It can cause distress and disability. The condition affects roughly 500,000 people in the United States alone. As such, it can significantly impact the quality of life for those affected.

 

To help ease any worries or confusion, we’ve put together a list of 10 frequently asked questions about what dystonia disease is. So you can get the helpful insight you need! You can take greater control over your condition and achieve a more balanced life quality through a better knowledge of common symptoms, diagnostic procedures, and treatment options. Let’s consider what you need to know about dystonia!

 

What is Dystonia Disease?

Dystonia is a neurological movement disorder characterized by involuntary, sustained muscle contractions. It causes abnormal body posturing. It can result in movement disorders, such as twisting and repetitive motions. It can be localized (affecting one area) or generalized (affecting multiple body parts). 

Dystonia affects any body part, but mostly:

  • Neck;
  • Face;
  • Arms;
  • Legs;
  • Or trunk.

 

Symptoms range from mild to severe and can vary significantly in intensity over time. But what are the dystonia disease common symptoms? They include:

  • Muscle stiffness or spasms;
  • Difficulty with coordination;
  • And balance issues due to weakened muscles.

 

It often co-occurs with other conditions such as depression, anxiety, and intellectual disability.

Tremor is frequently, but not always, inherent in dystonia. A tremor is an involuntary, rhythmic muscle contraction. It leads to shaking movements in one or more body parts. Researchers continue to examine the relationship between tremors and dystonia.

Dystonia can cause significant disability and discomfort for those affected. But, people with dystonia can live productive lives with proper diagnosis and treatment.

 

How Many Forms of Dystonia are There?

There are currently three recognized forms of dystonia:

  1. Primary dystonia;
  2. Secondary dystonia;
  3. Acquired/traumatic dystonia.

 

Let’s consider in more detail how many forms and subtypes dystonia has:

 

Primary dystonia. It occurs due to abnormal brain circuitry. It has four subtypes: 

  • Idiopathic torsion dystonia;
  • Heredodegenerative or early-onset dystonia;
  • Adult-onset primary focal and segmental dystonias;
  • And multifocal forms.

 

Secondary or symptomatic forms. These secondary forms of dystonia tend to be more focal and may involve one or two muscle groups. They include:

  • Neuroleptic agents;
  • Metabolic disorders such as Wilson’s disease;
  • Infectious diseases such as encephalitis;
  • Structural lesions in specific brain regions such as basal ganglia;
  • And others that can be due to trauma or toxin exposure.

 

The acquired/traumatic form. This form can develop due to underlying conditions. It is mainly due to:

Each type of dystonia has its symptoms and underlying cause. It helps physicians make a diagnosis and suggest potential treatments. Thus, timely diagnosis and appropriate treatment are essential for managing its symptoms.

 

What is Dystonia Caused By?

Dystonia is caused by abnormal basal ganglia functioning. The basal ganglia regulate muscle movement and posture. Its causes can also include infections, head trauma, or hereditary disorders. In some cases, the cause of dystonia cannot be unknown. Let’s consider these factors in more detail:

dystonia

Infections include:

  • Strep throat;
  • Sinusitis;
  • Ear infections;
  • Urinary tract infections;
  • And respiratory viruses.

Also, some bacterial infections are those triggers what can cause dystonia. They are Lyme disease and meningitis. 

 

Head trauma includes:

  • Traumatic brain injury (TBI) or a stroke. These injuries damage the part of the brain responsible for controlling muscle movement. It causes involuntary and unpredictable contractions.

In some cases, dystonia develops days or weeks after head trauma. In other cases, it can take months or even years for the symptoms to appear.

 

Hereditary disorders:

  • Mutations in several different genes. Some of these genes involve DYT1, THAP1, TUBB4A, and GCH1. 

Besides genetic mutations, some hereditary disorders can lead to dystonia. These are Huntington’s, Wilson’s, fragile X syndrome, and galactosemia. 

 

What Drugs Cause Dystonia?  

Drugs that cause dystonia include:

  • Serotonin-reuptake inhibitors (SSRIs) such as fluoxetine (Prozac);
  • Clomipramine (Anafranil);
  • Sertraline (Zoloft);
  • And paroxetine (Paxil);
  • Antipsychotics such as haloperidol;
  • Lithium carbonate;
  • And the Parkinson’s disease drug levodopa.

Antibiotics like penicillin and tetracyclines are also those drugs what can cause dystonia. These antibiotics can interfere with certain chemicals in the brain that control movement. This, in turn, can lead to dystonia. 

 

Additionally, the following substances can cause dystonia or worsen existing symptoms:

  • Carbon dioxide (CO2);
  • Carbon monoxide (CO);
  • Heavy metals like lead, mercury, and arsenic;
  • Industrial solvents containing toluene or xylene;
  • Solvents used in glue manufacturing processes, pesticides, and fungicides.

 

It is vital to be aware of any potential side effects of taking certain drugs what cause dystonia. Common side effects may include:

  • Dry mouth;
  • Headache;
  • Constipation;
  • Drowsiness;
  • Dizziness;
  • Vision changes;
  • And rapid heart rate.

 

Less common side effects may include:

  • Nausea;
  • Vomiting;
  • Rash;
  • Tiredness;
  • Weakness;
  • Restlessness, or trouble sleeping.

 

 In rare cases, some medications can cause serious side effects such as:

  • Chest pain;
  • Difficulty breathing;
  • Swelling of the face or throat;
  • And an irregular heartbeat.

If you experience any of these symptoms, contact your doctor immediately. Also, inform your doctor if you take other medications. It will help to ensure that there are no interactions between them. Always take medications as directed. Discuss any potential side effects or concerns with your doctor.

 

Is Dystonia Painful?

The answer to dystonia is painful, depending on the type and severity of this disorder. In some cases, there can be no pain. But certain movements or activities can cause discomfort or even pain in others. 

Generally speaking, dystonia often involves cramping or spasms that can be uncomfortable. For those who experience more severe symptoms, chronic pain is possible. It is due to tightness or stiffness in the muscles. 

Some individuals also experience headaches and other discomforts, which can be quite painful. Fortunately, several treatments available can help manage the symptoms of dystonia. They can also reduce any painful dystonia sensations. 

Thus, it is essential to speak with a qualified healthcare provider. They can assess your situation and create a tailored treatment. This will ensure you get the most effective and appropriate help to ease your symptoms. With the proper support, it is possible to reduce any dystonia pain and lead a fulfilling life.

 

How to Diagnose Dystonia?

A proper diagnosis is essential to determine which treatment plan will work best for you. One of the most common methods of diagnosing dystonia is through a physical exam. Your doctor or neurologist will assess your movements to see any signs of dystonia. If needed, they can also order additional tests such as:

  • Magnetic resonance imaging (MRI) scans;
  • Blood tests;
  • And genetic testing.

 

Another way how to diagnose dystonia is by assessment of movement accuracy and speed. This includes tasks such as:

  • Pressing buttons; 
  • Writing;
  • Drawing circles;
  • Tracing shapes on paper with a pencil;
  • And performing finger taps.

 

Your doctor can also ask you to complete certain activities that involve:

  • Muscle strength;
  • Coordination, and balance.

Following these tests, your doctor can order a dystonia-specific test such as electromyography. Finally, your neurologist will make a diagnosis. They will consider other factors like age of onset and family history. 

 

How to Cure Dystonia?

Despite advancements in treatment options, there is no known cure for dystonia. And while there is no single cure for dystonia, several therapeutic strategies are available. They reduce symptoms and provide relief:

  • Physical therapy;
  • Medications;
  • Botulinum toxin injections;
  • Electrical stimulation treatment;
  • Deep brain stimulation surgery.

 

Let’s consider these therapeutic strategies in more detail:

dystonia symptoms

1. Physical Therapy

A physical therapist can help create an individualized exercise program to:

  • Improve posture and strength;
  • Increase muscle flexibility around the affected area;
  • And reduce the risk of future injury.

 

Exercises include:

  • Stretching;
  • Strengthening;
  • And coordination drills tailored to a patient’s needs.

 

2. Medications

While there is no way on how to cure dystonia, several medications are available:

  • Anticholinergics to control muscle spasms or improve movement;
  • Botulinum toxin injections to relax contracted muscles and relieve pain;
  • Other medications, such as benzodiazepines and anticonvulsants to manage symptoms.

 

3. Botulinum Toxin Injections 

This treatment involves injecting small doses of botulinum toxin into affected muscles. This injection paralyzes muscles and temporarily reduces spasms.

It involves applying electrical currents to the nerves. They interrupt signals that cause involuntary muscle contractions, thus helping reduce spasms. 

  • Deep Brain Stimulation Surgery

During this procedure, electrodes are implanted into specific brain areas. They regulate nerve activity and reduce symptoms associated with dystonia.

 

Is Cervical Dystonia Considered a Disability?

Whether or not cervical dystonia is a disability depends on the individual’s symptoms and how they affect their daily life. It can be a disability if a person has significant limits to completing activities such as:

  • Writing;
  • Using a telephone;
  • Running;
  • Walking;
  • Standing;
  • Sitting;
  • Climbing stairs;
  • Lifting;
  • And other basic functions.

 

The Social Security Administration (SSA) has a set of guidelines. They determine if cervical dystonia medical condition is considered a disability. To qualify as disabled, an individual should demonstrate certain signs and symptoms. These signs significantly interfere with daily activities.

 

In addition, individuals can also be eligible for disability benefits if their cervical dystonia meets specific criteria. These criteria include:

  • Difficulty controlling head movements; 
  • Severe neck pain;
  • Inability to execute everyday activities due to movement disorder;
  • Or other impairments such as loss of balance or coordination.

If an individual’s cervical dystonia does not meet these criteria, it can not be a disability.

 

Are Parkinson’s and Dystonia Related?

Although dystonia and Parkinson’s are distinct neurological disorders, they cause similar movement problems, such as:

  • Tremors;
  • Stiffness;
  • And slow movement. 

 

Dystonia involves involuntary muscle contraction. They can cause repetitive, often patterned muscle spasms or movements. Symptoms of dystonia range from mild to severe and can affect any body part.

 

Parkinson’s disease is a progressive disorder. It is due to a degeneration of nerve cells in the brain that produce dopamine. It affects a person’s ability to control movement and leads to slow movements and rigidity. 

 

Additionally, certain types of dystonia can be due to Parkinson’s disease. Dystonias related to Parkinson’s are known as secondary dystonias. And there are four main types: 

  • Drug-induced dystonia;
  • Dopa-responsive dystonia;
  • Postural torsion dystonia;
  • And myoclonus dystonia.

According to estimates, 10 to 20 percent of people with Parkinson’s disease will develop one or more forms of secondary dystonia during their lifetime.

 

What is Myoclonic Dystonia?

Myoclonic dystonia is a rare movement disorder. It has signs of sudden and brief shock-like jerks or twitches of a muscle or group of muscles. This condition can affect any body part, but mostly these are:

  • Arms;
  • Legs;
  • Neck;
  • Face;
  • And trunk.

 

Myoclonic dystonia can cause frequent myoclonus (jerking). It can interfere with daily activities such as:

  • Walking;
  • Eating;
  • Sleeping;
  • Working;
  • Concentration and memory;
  • Speaking;
  • Reading;
  • And writing.

In severe cases, it also causes involuntary movements. They can be painful or disabling. The exact cause of myoclonic dystonia is unknown. But genetic factors play an essential role in its development. 

 

What is the treatment for myoclonic dystonia? Treatment usually consists of:

  • Medications; 
  • Therapies;
  • And lifestyle modifications.

They help reduce the severity of the symptoms and improve the quality of life. In some cases, it can be physical therapy or surgery. So, you should talk to your doctor if you have concerns about myoclonic dystonia. 

 

Get a Consultation from Lone Star Neurology Doctors

If you or someone you know is experiencing dystonia symptoms, don’t hesitate to contact our Lone Star Neurology medical professionals. Early diagnosis and treatment are vital to managing the condition. The right treatment plan helps patients relieve their symptoms and improve their quality of life. 

Are you experiencing any of the symptoms of dystonia? Have you been diagnosed with dystonia? Have you talked to a healthcare professional about your options?  Share your story in the comments below.

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Edward Medina
Edward Medina
15:34 30 Jun 22
Just such an amazing staff that makes you feel like part of their family. I’ve been going there for over 5 years now... and each visit I get the very best care and treatments that I have ever received in the 20+ years that I’ve been dealing with severe debilitating migraines. Since i started seeing them the number of my migraines has dropped from 15-20 a month to 2-3 every 3 month. I highly recommend them …they will change your life!read more
Daneisha Johnson
Daneisha Johnson
22:20 19 May 22
Dr. Askari was very kind and explained everything so I could understand. The other staff were nice as well. I would... have gave 5 stars but I was a little taken aback when I checked in and had to pay 600.00 upfront. I think that should have been discussed in a appointment confirmation call or email just so I could have been prepared.read more
Jean Cooper
Jean Cooper
16:54 29 Apr 22
I love the office staff they are friendly and very helpful. Dr. JODIE is very caring and understanding to your needs... and wants to help you. I will go back. would recommend Dr. Dr. Jodie to other Patients in a heart beat. The team works well together.read more
Linda M
Linda M
19:40 02 Apr 22
I was obviously stressed, needing to see a neurologist. The staff was so patient and Dr. Ansari was so kind. At one... point he told me to relax, we have time, when I was relaying my history of my condition. That helped ease my stress. I have seen 3 other neurologists and he was the only one who performed any assessment tests on my cognitive and physical skills. At one point I couldn't complete two assessments and got upset and cried. I was told, it's OK. That's why you're here. I was truly impressed, and super pleased with the whole experience!read more
Leslie Durham
Leslie Durham
15:05 01 Apr 22
I've been coming here for about 5 years. The staff are ALWAYS friendly and knowledgeable. The Doctors are the absolute... best!! Jodie Moore is always in such a great mood which is a plus when you are already stressed. Highly recommendedread more
Monica Del Bosque
Monica Del Bosque
14:13 25 Mar 22
Since my first post my thoughts have changed here. It's unfortunate. My doctor and PA were great, but the office staff... is horrible. They never call you back when they say they will, they misinform you, they cause you too much stress wondering what's going on, they don't keep you posted. They never answer the phone. At this point I've left four messages in the last week, and I have sent three messages. Twice from their portal and one direct email. No response. My appointment is on Monday morning at 8:30am, no confirmation on my insurance and what's going on. What the heck is going on, this is ridiculous!I've given up... the stress her office staff has put me through is just not worth it. You can do so much better, please clean house, either change out your office staff, or find a way for them to be more efficient please. You have to do something. This is not how you want to run your practice. It leaves a very bad impression on your business.read more
Ron Buckholz
Ron Buckholz
23:32 23 Mar 22
I was actually pleasantly surprised with this visit! It took me a long time to get the appointment scheduled because no... one answers your phones EVER! After a month, I finally got in, and your staff was warm, friendly, and I was totally impressed! I feel like you will take care of my needs!read more
Steve Nabavi
Steve Nabavi
16:28 16 Mar 22
It was a nice visit. Happy staff doing all they can do to comfort the patients in a very calming environment. You ask... me they are earned a big gold star on the fridge. My only complaint they didn't give me any cookies.read more
Katie Lewis
Katie Lewis
16:10 10 Feb 22
Had very positive appointments with Jodie and Dr. Sheth for my migraine care. Jodie was so fast with the injections and... has so much valuable info. I started to feel light headed during checkout and the staff was SO helpful—giving me a chair, water, and taking me into a private room until I felt better. Highly recommend this practice for migraine patients, they know what they’re doing!!read more
Joshua Martinez
Joshua Martinez
16:02 10 Dec 21
I was scheduled to be checked and just want to say that the staff was fantastic. They were kind and helpful. I was... asked many questions related to what was going on and not once did I feel as though I was being brushed off. The front desk staff was especially great in assisting me. I'm scheduled to go back for a mri and am glad that I'll be going there.read more
Isabel Ivy
Isabel Ivy
21:42 03 Nov 21
I had such a good experience with Lone Star Neurology, Brent my MRI Tech was so awesome and made sure I was very... comfortable during the appointment. He gave me ear plugs, a pillow, leg support and blanket, easiest MRI ever lol 🤣 My 72 hour EEG nurse Amanda was also so awesome. She made sure I was take care of over the 3 days and took her time with the electrodes to make sure it was comfortable for me! Paige was also a huge help in answering all my questions when it came to my test results, and letting me know her honest opinions about how I should go forth with my treatment.read more
Leslie Luce
Leslie Luce
17:37 20 Oct 21
The professionalism and want to help attitude of this office was present from the moment I contacted them. The follow... up and follow through as well as their willingness to find a way to schedule my dad was above and beyond. We visited two offices in the same day with the same experience. I am appreciative of this—we spend a lot of time with doctors and this was top notch start to finish.read more
robert Parker
robert Parker
16:38 16 Apr 21
I love going to this office. The staff is friendly and helpful. The doctor is great. I am getting the best... neurological tests and treatment I have ever had. The only reason I did not give them a 5 star rating is because it is impossible to reach a live person at the office to reschedule appointments. Every time I have tried to get through to the office it says all people are busy and I am sent to a voicemail. If they could get their phone answering fixed, I would give them a strong 5 stars.read more
MaryAnn Hornbaker
MaryAnn Hornbaker
00:26 25 Feb 21
Dr. Harney is an excellent Dr. I found him friendly , personable and thorough. I evidently am an unusual case. ... Therefore he spent a Hugh amount of time educating me. He even gave me literature to further explain my condition and how to follow up. This is something you rarely get from your doctors. So I am more than please with my doctor and his staff.read more
Roger Arguello
Roger Arguello
03:05 29 Jan 21
Always courteous, professional. The staff is very friendly and always work with you to find the best appointment time.... The care team has been great. Always taking the time to listen to your concerns and to find the best treatment.read more
Margaret Rowland
Margaret Rowland
01:12 27 Jan 21
I have been a patient at Lone Star Neurology for several years. Now both my adult daughters also are patients there. I... love Jodie. She is always so prompt whether it is a teleamed call are a visit in the office. She takes the time to explain everything to me and answers all my questions. I am so blessed to have Jodie as my doctor.read more
Susan Miller
Susan Miller
03:01 13 Jan 21
My husband had an accident 5 years ago and Lone Star Neurology has been such a blessing to us with my husbands care.... Jodie Moore is his provider and she is amazing! Jodie is very knowledgeable, caring, and thorough. She takes her time with you, making sure your needs are met and she is happy to answer any questions you may have. Lone Star Neurology’s patients are very lucky to have Jodie providing their care. Thank you Lone Star Neurology and especially Jodie for everything you have done for us. Jodie, you are the best!read more
Windalyn C
Windalyn C
01:32 09 Jan 21
Jodie is wonderful. She is very caring and knowledgeable. I have been to over a dozen neurologists, and none were able... to help me as much as they have here. Thanks!read more
Katie Kordel
Katie Kordel
00:40 09 Jan 21
Jodi Moore, nurse practitioner, is amazing. I have suffered from frequent, debilitating headaches for almost 20 years.... She has provided the best proactive and responsive care I have ever received. My quality of life has been greatly improved by her caring approach and tenacity in finding solutions.read more
Ellie Natsis
Ellie Natsis
15:41 07 Jan 21
I have had the best experience at this neurologist's office! For over a year I have been receiving iv treatments here... each month and my nurse, Bobbie is beyond wonderful!! She's so attentive, knowledgeable, caring, and detail oriented. She makes an otherwise uncomfortable experience much more pleasant and definitely puts me at ease! She also helps me with my insurance,ordering this specialty medication and dealing with the ordering process which is no easy feat.Needless to say, she goes above a beyond in every way and I'm so grateful to this office and to Bobbie for all they do for me!read more
Matt Morris
Matt Morris
15:39 07 Jan 21
Let me start by saying that I have been coming here for years. Due to my autoimmune disease, I am in this office... once every three weeks for multiple hours at a time. The office is very clean and the staff very friendly. My only complaint would be there communication via phone. They aren't the best at responding if you leave a voicemail and expect a call back. I understand that this is prob just due to the sheer number of alls they receive daily. What I can say I like the best about the office are the people. Bobby who handles my infusions is great. I never have any issues with her setting up my infusions. She is very quick to reply to messages sent via text and if she were to leave then my whole opinion of the office may change. I also enjoy people like Matt, Lauren, and Jodi. I appreciate all that they do for me and without this team I'm not sure I would be as happy as I am to visit the office as frequently as I have to. Please ensure that these folks are recognized as they are what makes my visit to this office so tolerable :).read more
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