/ Photo by Cameron Whitmas / iStock.
By Mary Carpenter
IMAGINE the terror of driving on a fast highway knowing that at any moment your eyes might jam shut —or facing a fully scheduled day with no idea when searing pain might force your retreat into a darkened room. The dramatic, unpredictable and different medical conditions— blepharospasm (benign essential blepharospasm or BEB) that can force the eyes shut; and migraine headaches that cause blinding pain—share surprising features. Notably, the symptoms of both can respond to Botox.
And Botox—now famous for smoothing wrinkles and later found to offer relief from migraines—had its first medical uses with issues affecting the eyes: blepharospasm (blepharo- is a prefix meaning eyelids), along with strabismus (crossed eyes). But the first research on botulinum toxin as a potential chemical weapon during World War II, according to the New York Times, found it “100 times more virulent than cyanide.”
The toxin “can cause a deadly reaction called botulism [if eaten] in spoiled food, because it blocks signals from your nerves and paralyzes your muscles,” according to WebMD. But when applied to the head and neck—and not digested by the stomach—the same effect on nerves appears to block neurotransmitters carrying signals from the brain—to prevent transmissions of pain from reaching the nerve endings.
Dubbed “pretty poison,” Botox medical treatments had the “unlikely [cosmetic] byproduct: brows as smooth as a child’s”—first applied to frown lines called “Elevens,” and then elsewhere around the face, according to the Times. Said late Canadian dermatologist Alastair Carruthers, first investigator of its wrinkle-blocking possibilities, “The worst complication of Botox treatment is reduced expressivity.”
But Carruthers believed that “we help people better express themselves…not looking angry/worried/stressed when they’re not angry/worried/stressed.” As noted in the Times obit, “movie directors complained that actors were losing their ability to emote [but] lawyers trumpeted it as an aid to retaining a poker face, a boon in negotiations.”
Besides responding to Botox treatment, BEB and migraine overlap in creating involuntary eye movements, called twitches or spasms. Twitches can occur in the early stages of a migraine headache, though they are more likely to accompany related conditions, such as retinal migraines, which cause temporary vision loss in one eye and can last from several minutes to months at a time; or cluster headaches, which create pain around the temple and eyes that radiates to the back of the head.
For Massachusetts-based event planner M.J., migraine headaches over 40 years caused missed work opportunities and precious family time—as well as daily fears of the next one coming. Botox gave M.J. some relief, as did various drug treatments—blood pressure medicine, antiseizure medicine and recently a new drug called Nurtec, famously touted by Lady Gaga. But M.J. said, “eventually [each drug] stops working very well” —while Botox continues to help.
For Maryland landscape designer G.L., “uncontrolled squinting, different from just squinting because of sunlight, screws up my whole face,” making it hard to concentrate on device screens for work and leading to worries about driving. Over more than a year, she visited a handful of specialists—including ophthalmologists and a neuro-ophthalmologist —who alternately prescribed light sensitivity (FL-41) sunglasses, erythromycin ointment for ocular rosacea, drops for dry eyes—and finally, a blepharospasm support group.
BEB “is a neurological disorder that causes spasms, or twitching, of the eyelid,” according to the National Institute of Neurological Disorder and Stroke (NINDS). But BEB sufferers believe “spasms” or even “intense squinting” describe their experience better than twitches. BEB symptoms include eye dryness and sensitivity to light, and “having a hard time keeping eyelids open, sometimes closed for long periods of time, which causes substantial visual disturbance or functional blindness.”
BEB is a type of dystonia or movement disorder that causes involuntary muscle contractions and is more likely to affect women between ages 50 and 70. According to MyClevelandClinic, “You blink more than most people…even when [not] having noticeable spasms.” Spasms occur in both eyes at the same time, synchronized spasms that are uncommon in other eye-twitching conditions—and in patterns sometimes discernible only by health-care providers. Calming can come from “sensory tricks…like humming, singing or touching your face.”
“Blepharospasm and its related disorders can feel overwhelming to learn about,” according to the website for the Benign Essential Blepharospasm Research Foundation, which offers videos that G.L. found useful. The site notes that the cause remains unknown, but dry eyes often precede or occur at the same time as blepharospasm and may trigger its onset “in susceptible persons.” The BEB site also warns that, over time “spasms may intensify…the eyelids may remain forcefully closed for several hours at a time.”
BEB can also make it difficult to close the eyes completely, which can interfere with sleep. Saying that neurotoxins were the only treatment she was aware of for BEB, B.L.’s neuro-ophthalmologist prescribed Xeomin, similar to Botox, which is supposed to last four to six months. “It helped a lot,” said G.L., though in less than two months, she felt symptoms “slowly creeping back.” Recent discoveries of different botulinum toxin strains can make it possible to alternate strains, allowing for effective results over longer periods of time.
Eating or chewing gum has helped G.L. reduce muscle contractions—especially when driving, but she has found “the most effective intervention is simply pressing against my forehead or the side of my temple.” Still, spasms come, off and on all day whenever she tries to concentrate —for example, focusing on an opponent who is about to serve in tennis, though “once the play starts, the uncontrolled squinting mostly resolves itself.”
Knowing about BEB, I intend to pay more attention to dry eyes when they occur. More importantly, though, I now have a better understanding of both conditions and of how much sufferers benefit from greater awareness among their friends—both about the symptoms of these debilitating conditions; and about why, during difficult periods, sufferers might need extra time in a darkened room or extra help with various tasks like driving.
—Mary Carpenter regularly reports on topical subjects in health and medicine.