Glover was terrified of what the sudden pain might mean. The beloved grandfather who had been her protector and caregiver had died suddenly of a ruptured brain aneurysm when she was 14. His death remained a particularly traumatic event for Glover, whose chaotic, violent childhood had left her with post-traumatic stress disorder.
For over a year, she told no one about the ice pick attacks that recurred every few months.
“I thought if I die, I die,” she recalled rationalizing to herself, though it was a bravado she didn’t really feel. Glover said she feared doctors would discover she also had an aneurysm, a bulge at a weak spot in an artery that can be treated with surgery but is often fatal if it bursts.
After the episodes became more frequent, Glover finally sought treatment, which led to a nearly decade-long search that included tests by multiple neurologists who found nothing alarming. The consensus seemed to be that Glover, now 61, was suffering from migraines, even though her symptoms didn’t seem to match that diagnosis and migraine medications weren’t helping.
It wasn’t until a new headache specialist, the seventh neurologist she saw, asked new, important questions that Glover figured out what was causing the severe headaches.
“I finally found someone who doesn’t call it a migraine,” Glover said she remembers thinking when he told her what he suspected. “I was like, ‘Oh, my God, this is it!’”
Episode at the craps table
In 2000, about a year after the first attack, Glover had a seizure at work and had to brace herself against the edge of a gaming table until the seizure passed.
A close friend to whom she confided her story chided her for being “selfish” by not seeing a doctor, urging 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 that left her with a dull, lingering headache that didn’t respond to over-the-counter painkillers, Glover went to an emergency room after hours. She was taken to a hospital after telling a nurse that her headaches had been going on for several days and that her grandfather had died of an aneurysm, which sometimes runs in families.
An MRI and CT scan showed no signs of serious brain abnormality. Doctors did find a benign cyst in her parietal lobe, a part of the brain involved in feeling and perception. Glover spent a night in the hospital, where she was given injections of painkiller. The headaches disappeared.
The doctor reached into a filing cabinet, pulled out a fact sheet, and handed it to Glover. This, he told her, was what he suspected was wrong.
Doctors decided that the cyst did not require treatment and that it was probably unrelated to the seizures, which gradually became more frequent. Over the next few years, Glover visited several neurologists and a neuropsychologist who ruled out epilepsy, multiple sclerosis, and dementia. One doctor told her that “headaches are a psychosomatic manifestation.”
Glover discovered much later that he had written in a referral to another physician that she may have been somatizing — exhibiting symptoms that had an emotional but not physical cause — and may have been malingering — exaggerating or making up symptoms to gain attention or achieve some other goal.
“I felt abandoned and disappointed,” she said. “You trust these doctors with personal information and experiences, and they accuse you of lying.”
But because doctors couldn’t explain her unusual headaches, Glover said she “wondered if I was causing this pain. And then one of the attacks came and I thought, ‘There’s no way I’m doing this to myself.'” Other doctors seemed to agree.
A consensus emerged that Glover suffered from migraines, although she never had nausea, an aura, sensitivity to sound or light, or a throbbing sensation, which are hallmarks of migraines. She took her prescribed migraine medication sporadically because it didn’t seem to make a difference.
In 2009, Glover was referred to a neurologist she described as “very compassionate.” He seemed determined to find out what was wrong and ordered blood tests for a range of illnesses, including arsenic and lead poisoning. All came back negative.
Confused, 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.
She also.
A key question
After hearing Glover’s description of her seizures, the headache specialist, the first she’d seen, ran through 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. Her right eye always tore during a seizure and sometimes looked bloodshot. And she had suffered a traumatic brain injury after being hit by a car at age 7.
The doctor reached into a filing cabinet, pulled out a fact sheet, and handed it to Glover. This, he told her, was what he suspected was wrong — and it wasn’t migraines.
Glover showed clear signs of SUNCT: brief, unilateral neuralgic 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 stabbing pain that are 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; as many as 600 attacks per day have been reported.
Unlike migraines and many other headaches, SUNCT is distinguished by an unusual symptom: involuntary watery or bloodshot eyes, known as conjunctival injection. (Some patients, including Glover, also get 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 thought to originate in the trigeminal nerve, which carries sensory signals from the face to the brain. Treatment focuses on preventing seizures. Medications 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-based headache specialist and board member of the National Headache Foundation, a support and advocacy group. It’s important to rule out a cyst or tumor as the cause of unusual headaches, she added.
After hearing the doctor’s diagnosis, Glover said, “This is me, I’m not dying.”
—Patti Glover
Although headaches are among the most common ailments, SUNCT headaches are so rare that many neurologists have never seen one. And headaches, O’Brien noted, make up only a small part of neurology training.
O’Brien estimates she’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 more than one type of headache (there are more than 100), further complicating the diagnosis.
O’Brien advises people to keep a log of their headache symptoms, along with the frequency, duration and location of the pain. This will help doctors better assess possible causes.
“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 proven elusive. The cocktail of powerful anti-epileptic drugs she took for years, Glover said, turned her into a “zombie.”
Glover said she began treatment a decade ago for complex PTSD, a form of the disorder that results from trauma that occurs over a period of time rather than a single event. The treatment has allowed her to better cope with her headaches, she said, and other stresses in life.
Through trial and error, Glover and her doctors discovered that naratriptan, a medication used to treat migraines, is somewhat effective at preventing attacks, which until recently had occurred on an almost weekly basis.
In April, Glover underwent surgery to remove a malfunctioning gallbladder. Since then, Glover has experienced only two episodes, much to her delight. She jokes that she wishes her gallbladder had been removed years ago and plans to ask her neurologist about a possible connection between SUNCT and gallbladder disease.
Glover said she is extremely grateful to the headache specialist who finally found the cause of the ice pick attacks that had been physically and emotionally troubling her 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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