Glover was terrified by what the sudden pain might portend. 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, violence-scarred childhood had left her with post-traumatic stress disorder.
For more than a year she told no one about the ice pick episodes that recurred every few months.
“I figured if I died, I died,” she remembered rationalizing to herself, although it was a bravado she didn’t actually feel. Glover said she feared doctors would discover that she too had an aneurysm, a bulge in a weak spot in an artery that can be treated surgically but is often fatal if it bursts.
After the episodes became more frequent, Glover finally sought treatment, launching a nearly decade-long search that involved tests ordered by multiple neurologists who found nothing alarming. The consensus appeared to be that Glover, now 61, was suffering from migraines, even though her symptoms didn’t seem to match that diagnosis, and migraine medicine didn’t help.
It wasn’t until a new headache specialist, the seventh neurologist she saw, asked new key questions that Glover learned what was causing the excruciating episodes.
“I finally found someone who’s not calling it a migraine,” Glover said she remembers thinking when he told her what he suspected. “I thought ‘Oh, my God, this is it!’”
Episode at the craps table
In 2000, roughly a year after the first episode, Glover experienced an attack at work and had to brace herself against the edge of a gaming table until it passed.
A close friend in whom she confided chided her for being “selfish” by not seeing a doctor. He urged her to consider how “people who loved me would feel if I didn’t do something when I could have,” she said.
In 2001, after a particularly severe attack left her with a dull headache that lingered and did not respond to over-the-counter painkillers, Glover went to an after-hours urgent care center. She was transferred to a hospital after telling a nurse her headache had lasted several days and that her grandfather had died of an aneurysm, which can sometimes run in families.
An MRI and a CT scan showed no sign of a serious brain abnormality. Doctors did find a benign cyst in her parietal lobe, a part of the brain involved in sensation and perception. Glover spent a night in the hospital, where she was given injections of a painkiller. The headache disappeared.
The doctor reached into a file cabinet, pulled out a fact sheet and handed it to Glover. This, he told her, is what he suspected was wrong.
Doctors decided that the cyst did not need treatment and that it was probably unrelated to the attacks, which gradually became more numerous. Over the next few years Glover saw several neurologists and a neuropsychologist who ruled out epilepsy, multiple sclerosis and dementia. One doctor told her “a headache is a psychosomatic expression.”
Glover discovered much later that he wrote in a referral to another doctor that she might be somatizing — displaying symptoms that had an emotional but not a physical cause — and possibly malingering — exaggerating or inventing symptoms for attention or another purpose.
“I felt let down and disappointed,” she said. “You trust these doctors with personal information and experiences, and they accuse you of lying.”
But as physicians were unable to explain her unusual headaches, Glover said she “did wonder if I was bringing this pain on. And then one of the attacks hit and I thought, ‘No way am I doing this to myself.’” Other doctors seemed to agree.
A consensus emerged that Glover was suffering from migraines, although she never experienced nausea, an aura, sensitivity to sound or light or a throbbing sensation, which are characteristics of migraines. She took the migraine medicine she was prescribed sporadically because it didn’t seem to make a difference.
In 2009, Glover was referred to a neurologist whom she described as “very compassionate.” He seemed determined to figure out what was wrong and ordered blood tests for a host of diseases including arsenic and lead poisoning. All were negative.
Stumped, he referred Glover to a headache specialist, a neurologist with advanced training in the diagnosis and treatment of headaches, whom he respected. “I hope he can figure it out,” the neurologist told Glover.
So did she.
A key question
After listening to Glover’s description of her attacks, the headache specialist, the first she had seen, ran through a list of familiar questions. Then he added two new ones: Did her eye tear after the pain started and had she suffered a head injury? Glover replied yes to both. Her right eye always teared during an attack and sometimes looked bloodshot. And she had suffered a traumatic brain injury after being hit by a car when she was 7.
The doctor reached into a file cabinet, pulled out a fact sheet and handed it to Glover. This, he told her, is what he suspected was wrong — and it wasn’t migraines.
Glover was exhibiting telltale signs of SUNCT: short-lasting, unilateral neuralgiform headache attacks with conjunctival injection and tearing. A rare form of headache that affects one side of the head and is characterized by bursts of piercing pain often described as excruciating, SUNCT headaches last between five seconds and four minutes per episode and usually occur in the daytime. Five to six rapid fire attacks per hour are common; as many as 600 attacks a day have been reported.
Unlike migraines and many other types of headache, SUNCT is distinguished by an unusual symptom: involuntary tearing or bloodshot eyes, known as conjunctival injection. (Some patients, Glover among them, also develop a runny nose.) Triggers include touching the face or head, moving the neck and coughing. Often the cause is unknown, although head trauma has been linked to SUNCT.
SUNCT headaches are believed to originate in the trigeminal nerve, which sends sensory messages from the face to the brain. Treatment is focused on preventing attacks. Medication to treat epilepsy or nerve pain are sometimes prescribed. In severe cases, injections of lidocaine, a local anesthetic, may be helpful.
They “can be very difficult to treat,” said neurologist Hope O’Brien, a Cincinnati headache specialist and 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 head pain, 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 ailments, SUNCT headaches are so rare many neurologists have never seen a case. And headaches, O’Brien noted, constitute only a small part of neurology training.
O’Brien estimates that she has treated two or three SUNCT patients in the past 15 years. Migraines, by contrast, are estimated to affect 40 million Americans. Some people have more than one type of headache (there are more than 100), further complicating diagnosis.
O’Brien advises that people keep a log detailing their headache symptoms along with the frequency, duration and location of the pain to help doctors narrow the possibilities.
‘I know it will pass’
Glover remembers feeling giddy and relieved by the SUNCT diagnosis. “I said, ‘This is me. I’m not going to die.’”
But living with the condition has been difficult, and effective treatment has proved elusive. The cocktail of potent anti-seizure drugs she took for several years, Glover said, turned her into a “zombie.”
A decade ago, Glover says she received treatment for complex PTSD, a form of the disorder that results from trauma that occurred over an extended period rather than from a single event. Treatment has enabled her to better cope with her headaches, she said, and other life stresses.
Through trial and error, Glover and her doctors discovered that naratriptan, a drug used to treat migraines, is somewhat effective at preventing attacks, which were occurring more or less weekly until recently.
In April, Glover underwent surgery to remove a malfunctioning gallbladder. Since then, much to her delight, Glover has experienced only two episodes. She jokes that she wishes her gallbladder had been removed years ago and plans to ask her neurologist about a possible link between SUNCT and gallbladder disease.
Glover said she is deeply grateful to the headache specialist who ultimately identified the reason for the ice pick attacks that had plagued her physically and emotionally for years.
“I’m not a nervous wreck anymore,” she said. “I know what it is, and I know it will pass.”
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