Dear Doctors: I’ve recently been diagnosed with benign essential blepharospasm. Would you please explain what this is? How serious is it? Does it spread? I know it’s not deadly, but I’ve read that it can be debilitating, and I’m a little concerned about my future.
Dear Reader: Benign essential blepharospasm, often shortened to BEB, is a neurological disorder that causes spasms in the muscle that closes the eyelids. Known as the orbicularis oculi, it’s a sphincter muscle made up of concentric bands around the upper and lower eyelids. When the muscle contracts, the eyelid closes.
The spasms of BEB cause uncontrolled twitching and blinking and can leave the individual unable to keep their eyes open. The condition is seen more often in women than in men, and it typically arises in middle or older age. It occurs in about 1 of every 20,000 people, and is thus is considered to be a rare disorder.
Early symptoms include the onset of repeated and involuntary blinking. This is often linked to physical stimuli such as harsh or bright light; triggers that can include stress, fatigue or emotional turmoil; and environmental factors, like dry air, wind or pollution. As the muscle spasms become stronger or more frequent, they can cause prolonged narrowing of the eyes, or squinting. If the condition becomes severe, the spasms can become so closely spaced that the eyelids remain closed for hours at a time.
The word “benign” indicates that this condition does not adversely affect general health, and it does not spread to other parts or regions of the body. However, BEB is progressive. That means that as time passes, the symptoms can occur more often and become more intense and more pronounced. Because this condition affects sight, it can interfere with the ability to accomplish essential daily activities, and it may lead to a diminished quality of life.
Diagnosis is based on the presence of the unique and characteristic symptoms of the condition. Treatment options include oral medications, injections of botulism toxin and surgery. Oral meds have had mixed results that are often temporary.
The primary treatment at this time is the use of botulinum toxin products. Botox and Xeomin are both approved by the Food and Drug Administration for use in blepharospasm. Injections into the orbicularis oculi muscles cause them to weaken, which allows the individual to maintain voluntary control of their eyelids.
When drug therapies fail, surgery may be considered. A procedure to remove branches of the nerves involved in blinking had been used in the past. However, due to complications, which include facial paralysis, this is now rarely used.
Health data shows a 98% success rate with botulinum toxin products. More than half of patients get full relief. Slightly less than half have partial relief, to what they say is a “tolerable” level. Potential side effects include eye irritation and a sensation of heaviness in the brow. The effects of the injections last for up to 12 weeks, after which they must be repeated.
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