Blepharospasm: symptoms, causes and treatment

Blepharospasm is one of the focal dystonias, meaning that a single group of muscles, here those around the eyes, is affected. NHS inform lists blepharospasm among the types of focal dystonia that affect the muscles around your eyes, alongside neck dystonia, laryngeal dystonia and writer's cramp. The NHS lists it in its table of dystonia types as the form affecting the eyes.

Dystonia UK says it is characterised by continuous or intermittent muscle contractions which cause abnormal, often painful, repetitive movements in the eyes. Sometimes blepharospasm is experienced together with dystonia of the mouth, jaw or tongue (oromandibular dystonia). The medical term for this combination is Meige syndrome.

Dystonia UK says it usually starts gradually and affects just one eye, but often eventually progresses to affect both. The frequency and severity of the muscle spasms generally increase over a period of one to two years.

The NHS lists uncontrolled blinking among the symptoms of dystonia, and says the symptoms may be continuous or come and go. NHS inform similarly lists excessive blinking.

• Excessive and uncontrollable blinking.

• Muscle spasms around the eyes that cause them to close.

• Being unable to re-open the eyes.

• Dry eyes.

• Eyes that are sensitive to light.

• Tremor.

Dystonia UK says dystonia is caused by incorrect signals from the brain to the affected body part. The NHS says dystonia is caused by a problem with the part of the brain that controls movement and that often it is not known why this happens.

The NHS says dystonia can sometimes be due to an inherited genetic problem, a side effect of certain medicines such as antipsychotic and anti-sickness medicines, or another condition such as Parkinson's disease, a stroke, cerebral palsy or multiple sclerosis. NHS inform divides dystonia into primary dystonia, which is a condition on its own, and secondary dystonia, which occurs as a symptom of another condition.

The NHS lists things that can trigger symptoms of dystonia: tiredness, stress, drinking alcohol or caffeine, talking, eating or chewing, and activities such as writing or typing. Dystonia UK says stress and anxiety are known to make blepharospasm worse.

The NHS says that if a GP thinks you could have dystonia they will refer you to a specialist called a neurologist for tests. To diagnose dystonia, a neurologist may ask about your symptoms, other conditions and medicines you are taking, and whether anyone else in your family has dystonia. They may carry out blood and urine tests and arrange a brain scan to look for any problems.

Dystonia UK says blepharospasm is usually diagnosed and treated by an ophthalmologist or a neurologist specialising in movement disorders. NHS inform says you may need tests to confirm whether you have primary or secondary dystonia.

Dystonia UK lists the common treatments as botulinum toxin injections, oral medication, physiotherapy, self-help techniques and ptosis props (eye crutches).

NHS inform says that if you have focal dystonia you might be offered botulinum toxin, which is injected into the affected muscles. It blocks the neurotransmitters within the nerve, reducing muscle spasms, and the effects of the injection can last from around 3 months to 6 months. The NHS says botulinum toxin injections need to be repeated about every 3 months.

NHS inform says oral medications can be effective for some people with generalised dystonia, such as anticholinergics, baclofen and muscle relaxants. Deep brain stimulation, a type of brain surgery, is offered to some people with dystonia where other treatments have not been successful, and the NHS says it may be offered on the NHS if other treatments do not help.

Dystonia UK lists techniques that some people find helpful for blepharospasm. You may need to try a few to find the ones that work for you.

• Press your fingers against the temples, end of nose or other parts of your face, finding the spot that suits you.

• Use distraction techniques, such as taking a very deep breath, chewing gum, whistling, humming, sucking on a straw, singing, reading aloud or pinching yourself.

• Use relaxation techniques in a dark place.

• Put your head back, close your eyes or look down rather than trying to look ahead.

• Block out bright light by wearing a hat or visor, wraparound sunglasses outdoors and tinted lenses indoors.

The NHS says dystonia is usually a lifelong problem, but treatment can help relieve the symptoms. It may get worse for a few years but then remain steady, and occasionally it can improve over time. The severity of symptoms can vary from one day to another.

Dystonia UK says you may need to find ways to adapt and may have to learn new ways to complete everyday tasks, but it is possible to live well with the condition, and the charity offers support from initial onset through diagnosis and finding treatment.

Many people have occasional eyelid twitching, which is a different thing. The NHS says twitching or blinking from time to time is fairly common and often happens when you are tired. Blepharospasm is persistent, bilateral over time, and can interfere with keeping the eyes open.

The NHS says to see a GP if you think you might have dystonia, noting that dystonia is uncommon but it is best to get the symptoms checked out. Dystonia UK lists dry eyes among the symptoms of blepharospasm, and says it is usually diagnosed by an ophthalmologist or a movement disorders neurologist.

On the NHS you start with a GP, who refers you to a neurologist, and care for botulinum toxin injections is usually delivered in neurology or ophthalmology clinics. Dystonia UK lists some hospital services that offer diagnosis and botulinum toxin injections.

Some people see a private neurologist or ophthalmologist for faster assessment or injections. If you do, ask for letters to be shared with your GP so that injection timing and any other treatment are coordinated.