​Spasmodic Torticollis

Spasmodic torticollis, also known as cervical dystonia, is a type of dystonia (disease in which your muscles contract involuntarily), causing uncontrollable, repetitive or twisting movements. It is a painful and incapacitating neurological movement disorder, that is, its origins are related to the brain. If you are suffering from this disease, your neck muscles contract involuntarily, which causes your head to twist or turn to the left, right, upwards, and/or downwards, forwards, backwards and sideways. 

Spasmodic torticollis is a rare disorder that can occur at any age, but usually manifests itself during middle age. Although it can occur amongst both sexes, women are more likely to get affected. The disease is idiopathic, that is, no exact cause is known. However, in some cases, it is believed to result from head, neck or shoulder injuries. There are also certain drugs, (especially antipsychotic or anti-nausea) that have been known to trigger cervical dystonia in a few cases.

The main symptom of spasmodic torticollis is uncontrollable head movements in all directions including:

  • Your chin moving towards your shoulder

  • You ear moving towards your shoulder

  • You chin moving straight upwards

  • Your chin moving straight downwards

You could experience one or more of these symptoms simultaneously. These are often accompanied by a jerking motion of the head. You may also experience neck and shoulder pain, along with headaches. The pain experienced from spasmodic torticollis is constant and sometimes extreme, often causing depression, stress and anxiety as well​

If you are experiencing involuntary jerking movements along with pain in your neck or shoulders, it is recommended that you consult with your doctor immediately. You can obtain additional information and expert medical advice from the highly trained staff at the <Mind and Brain Service Line> at The Aga Khan University Hospital.
Your time with your doctor may be limited, so make sure to prepare for your visit beforehand. Here are some tips to help get you started.

Your doctor will base his/her diagnosis of spasmodic torticollis on your personal history and relevant medical information, along with a neurological examination. It is often easily diagnosed based on your symptoms. However, it is important to check for other underlying conditions that may be causing the symptoms.

Your doctor may choose to conduct blood or urine tests to check for the presence of toxins. A brain scan known as MRI (Magnetic Resonance Imaging) may be used to generate an image of your brain in order to check for tumours or evidence of stroke. Another test known as EMG (Electromyography) may be conducted. This is a diagnostic procedure to assess the health of muscles and the nerve cells that control them. During this test thin needle electrodes are inserted into your muscle to record the electrical activity in that muscle.                         ​

There is no single treatment strategy appropriate for every case of spasmodic torticollis but medication and therapy can help you to manage the pain and symptoms. In some cases, symptoms disappear without any treatment, but they often reoccur. 

Medical specialists working with the Mind and Brain Service Line at The Aga Khan University Hospital are equipped to provide comprehensive, state-of-the-art medical care, and discuss with you the measures being undertaken.

You can use a combination of medications to reduce the symptoms of spasmodic torticollis, including:

  • Botulinum toxin: more commonly known as Botox, this paralyzing agent can be injected directly into your neck muscles. This procedure must be repeated every three to four months.

  • Parkinson's drugs: certain medications used to combat the tremors associated with Parkinson's disease can be used in combination with botulinum toxin injections. There are some side effects including visual blurring dry mouth, memory problems, constipation, reduced urinary stream.

  • Muscle relaxants: These drugs can also be helpful, but side effects include sedation, imbalance and mild thought impairment.

  • Pain medications: These may be prescribed depending on your symptoms and their severity.

It is also important to keep a healthy, active lifestyle including regular exercise to improve muscle strength and wearing a neck brace to provide additional support. You can also use a variety of stress management techniques to prevent stress related spams.                         ​

The Aga Khan University Hospital offers various support services to help with managing or recovering from the disease or condition. These include but are not limited to nutrition, physiotherapy, rehabilitation, specialized clinics and some patient support groups. Your doctor or nurse will advise you accordingly.

The Aga Khan University Hospital offers financial assistance to those who are in need and fulfil the eligibility criteria. For further information, you can contact the Patient Welfare Department. You can find the contact number of the Patient Welfare Department in the ‘Important Numbers’ section on the website homepage.

The financial counselling staff is available during office hours, at the main PBSD (Patient Business Services Department), to answer your financial queries on treatments’ costs and authorize admissions on partial deposit as per hospital policies allow. The financial counsellor in the emergency room is open 24/7. You can find the contact number of the Patient Business Services in the ‘Important Numbers’ section on the website homepage.                         ​

Your doctor and or nurse will give you specific instructions about the prescribed medication. Please ensure that you take or use the prescribed medicine as advised. It can be dangerous to your health if you self-prescribe. Please inform the doctor or nurse beforehand if you have experienced any adverse reactions to any medications in the past. If you experience any symptoms of drug poisoning, overdose or severe reaction please contact the Pharmacy Service at The Aga Khan University Hospital immediately. You can find the contact number of the Pharmacy Services in the ‘Important Numbers’ section on the website homepage                         

The information provided on our website is for educational purposes and not intended to be a substitute for medical advice, diagnosis or treatment. You should always seek the advice of your doctor or other healthcare professional provider.