Glover was terrified of what the sudden pain might mean. The beloved grandfather who had been her protector and caretaker had died suddenly of a ruptured brain aneurysm when she was 14. His death remained a particularly traumatic event for Glover, whose chaotic and violent childhood had left her with post-traumatic stress disorder.
For over a year, she told no one about the ice pick episodes that recurred every few months.
“I thought, if I die, I die,” she recalled telling herself, though it was a bravado she didn’t really feel. Glover said she worried doctors would discover she, too, had an aneurysm, a lump in a weak spot in an artery that can be treated surgically but is often fatal if it bursts.
As the attacks became more frequent, Glover finally sought treatment. She began a search that lasted nearly a decade and included tests ordered by several neurologists who found nothing alarming. The consensus seemed to be that Glover, now 61, suffered from migraines, although her symptoms didn’t seem to fit that diagnosis and migraine medications weren’t helping.
It wasn’t until a new headache specialist, the seventh neurologist she’d seen, asked her new key questions that Glover learned what was causing these excruciating episodes.
“I finally found someone who doesn’t talk about migraines,” Glover recalls thinking when he told her what he suspected. “I thought, ‘Oh my God, this is it!’”
Episode at the craps table
In 2000, about a year after the first episode, Glover suffered a stroke at work and had to lean against the edge of a gaming table until it passed.
A close friend she confided in criticized her for being “selfish” for not seeing a doctor. He encouraged her to think about how “the people who love me would feel if I didn’t do something when I could have,” she said.
In 2001, after a particularly bad attack that left her with a dull, persistent headache that didn’t respond to over-the-counter painkillers, Glover went to an after-hours urgent care center. She was transferred to the hospital after telling a nurse that her headache had been going on for days and that her grandfather had died of an aneurysm, a condition that can sometimes run in families.
The MRI and CT scans showed no signs of serious brain abnormalities. However, doctors discovered a benign cyst in his parietal lobe, a part of the brain involved in sensation and perception. Glover spent a night in the hospital, where he was given injections of a painkiller. The headache went away.
The doctor dug into a file cabinet, pulled out a fact sheet, and handed it to Glover. He told him that was what he thought was wrong.
Doctors decided the cyst did not need treatment and was probably unrelated to the seizures, which were becoming more frequent. Over the next few years, Glover saw several neurologists and a neuropsychologist who ruled out epilepsy, multiple sclerosis and dementia. One told him that “a headache is a psychosomatic expression.”
Glover discovered much later that he had written in a letter to another doctor that she may have been somatizing—having symptoms that had an emotional but not physical cause—and possibly malingering—exaggerating or inventing symptoms to gain attention or for other purposes.
“I felt disappointed and let down,” she said. “You trust these doctors who tell you information and personal experiences, and they accuse you of lying.”
But when doctors couldn’t explain her unusual headaches, Glover said she “wondered if I was causing this pain. Then one of these attacks came on and I thought, ‘I’m not going to do this to myself.'” Other doctors seemed to agree.
Glover was admitted to have migraines, although she never experienced nausea, aura, sensitivity to sound or light, or a pulsating sensation, which are characteristic of migraines. She took her prescribed migraine medications sporadically, as they did not seem to make a difference.
In 2009, Glover was referred to a neurologist she described as “very compassionate.” He seemed determined to figure out what was wrong and ordered blood tests for a host of conditions, including arsenic and lead poisoning. All came back negative.
Baffled, he referred Glover to a headache specialist, a neurologist with advanced training in headache diagnosis and treatment, whom he respected. “I hope he can figure something out,” the neurologist told Glover.
Her too.
A key question
After listening to Glover describe her seizures, the headache specialist, the first one she had seen, asked her a list of familiar questions. Then he added two new ones: Did her eye water after the pain started, and had she suffered a head injury? Glover answered yes to both questions. Her right eye always watered during a seizure and sometimes looked bloodshot. And she had suffered a head injury after being hit by a car when she was 7.
The doctor dug into a file cabinet, pulled out a fact sheet and handed it to Glover. He explained that this was what was suspected and that it was not migraines.
Glover had the telltale signs of SUNCT: attacks of short-lived, unilateral neuralgic headaches with conjunctival injection and tearing. A rare form of headache that affects one side of the head and is characterized by piercing attacks of pain often described as excruciating, SUNCT headaches last between five seconds and four minutes per episode and usually occur during the day. Five to six rapid attacks per hour are common; up to 600 attacks per day have been reported.
Unlike migraines and many other types of headaches, SUNCT is distinguished by an unusual symptom: involuntary tearing or bloodshot eyes, called conjunctival injection. (Some patients, including Glover, also develop a runny nose.) Triggers include touching the face or head, moving the neck, and coughing. The cause is often unknown, although head trauma has been linked to SUNCT.
SUNCT headaches are thought to originate from the trigeminal nerve, which sends sensory messages from the face to the brain. Treatment is aimed at preventing seizures. Medications to treat epilepsy or nerve pain are sometimes prescribed. In severe cases, injections of lidocaine, a local anesthetic, may be helpful.
“These headaches can be very difficult to treat,” said neurologist Hope O’Brien, a headache specialist in Cincinnati and a board member of the National Headache Foundation, a resource and advocacy group. It’s important to rule out a cyst or tumor as a cause of unusual headaches, she added.
After hearing the doctor’s diagnosis, Glover said, “This is me, I’m not going to die.”
— Patti Glover
Although headaches are among the most common conditions, cases of SUNCT headaches are so rare that many neurologists have never seen them. And headaches, O’Brien noted, are only a small part of neurology training.
O’Brien estimates he’s treated two or three SUNCT patients in the past 15 years. Migraines, on the other hand, affect an estimated 40 million Americans. Some people have multiple types of headaches (there are more than 100), making diagnosis even more complicated.
O’Brien advises people to keep a diary detailing their headache symptoms as well as the frequency, duration and location of the pain to help doctors narrow down the possibilities.
“I know it will pass”
Glover recalls feeling a sense of relief and giddiness after the SUNCT diagnosis. “I thought, ‘This is me. I’m not going to die.’”
But living with the disease is difficult, and there is no effective treatment. The cocktail of powerful anti-epileptic drugs she took for several years, Glover said, turned her into a “zombie.”
A decade ago, Glover said she received treatment for complex post-traumatic stress disorder, a form of the disorder that results from trauma over a long period of time rather than a single event. The treatment helped her cope better with her headaches, she said, and other life stresses.
Through trial and error, Glover and his doctors discovered that naratriptan, a drug used to treat migraines, was relatively effective at preventing attacks, which until recently had been occurring more or less weekly.
In April, Glover underwent surgery to remove a malfunctioning gallbladder. Since then, to her delight, Glover has had only two episodes. She jokes that she wishes she had her gallbladder removed years ago and plans to ask her neurologist if there is a possible link between SUNCT and gallbladder disease.
Glover said she was deeply grateful to the headache specialist who finally identified the cause of the ice pick attacks that had tormented her physically and emotionally for years.
“I’m not a nervous wreck anymore,” she said. “I know what it’s like and I know it’s going to pass.”
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