Constant, painful headaches

The first headaches occurred when Glover was in her mid-30s. She was standing in front of a bathroom mirror fixing her hair while getting ready for her job as a craps dealer in Las Vegas when she was suddenly struck by an intense pain on the right side of her head.

The pain was intense enough that Glover staggered backwards and fell to her knees, clutching her head. After around 10 rapid-fire bursts of pain, each one lasting several seconds, the pain went away and was replaced by a slight dull ache that lingered for hours.

For more than a year, Glover didn't tell anyone about the headaches that would occur every few months. She was concerned that if she went to a doctor, they'd discover she had a brain aneurysm similar to the one that killed her grandfather when she was 14. "I figured if I died, I died," Glover said.

In 2000, around a year after the first episode, Glover experienced an attack while working and had to brace herself against the gaming table until it passed. A close friend of Glover told her she was being "selfish" for not seeing a doctor and urged her to consider how "people who loved me would feel if I didn't do something when I could have," Glover said.

In 2001, after an especially painful attack, Glover went to urgent care and was transferred to a hospital after she told a nurse her headache had lasted multiple days and that her grandfather had died of an aneurysm.

An MRI and CT scan found no signs of a serious brain abnormality, though doctors did find a benign cyst in Glover's parietal lobe. She spent the night in the hospital where she received injections of a painkiller, and her headache went away.

Doctors ultimately decided the cyst didn't need treatment and was likely unrelated to the attacks, which were slowly becoming more frequent. Over the next few years, Glover saw multiple neurologists and a neuropsychologist who ruled out epilepsy, multiple sclerosis, and dementia.

Glover discovered later that one doctor wrote to another doctor in a referral that Glover might be somatizing, or displaying symptoms that had an emotional cause rather than a physical one, and that she might be malingering, exaggerating, or inventing symptoms for attention or another purpose.

"I felt let down and disappointed," Glover said. "You trust these doctors with personal information and experiences, and they accuse you of lying."

After multiple doctors couldn't explain Glover's headaches, she 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.'"

Most doctors believed Glover was suffering from migraines, even though she never experienced nausea, an aura, sensitivity to sound or light, or a throbbing sensation. She took migraine medicine that was prescribed to her, but it didn't seem to help.

A visit with a headache specialist

In 2009, Glover was referred to a neurologist she said was "very compassionate" who ordered blood tests for a number of different diseases, including arsenic and lead poisoning, but all were negative. He referred her to a headache specialist — a neurologist who had advanced training in the diagnosis and treatment of headaches.

After listening to Glover's description of her attacks, the specialist asked her a series of questions Glover had heard before, but added two new ones: Did her eye tear after the pain started, and had she suffered a head injury?

Glover said yes to both — her eye always teared up during an attack and sometimes looked bloodshot, and she had suffered a traumatic brain injury after she was hit by a car when she was 7.

The specialist diagnosed Glover with SUNCT — short-lasting, unilateral neuralgiform headache attacks with conjunctival injection and tearing.

SUNCT is a rare form of headache that affects one side of the head and is characterized by bursts of piercing pain. These headaches typically last between five seconds and four minutes per episode and typically happen during the day. Five to six rapid attacks per hour are common, though as many as 600 attacks a day have been reported.

Unlike other types of headaches, SUNCT is distinguished by involuntary tearing or bloodshot eyes, known as conjunctival injection. Some patients, including Glover, also develop a runny nose. Triggers for the attacks include touching the face or head, moving the neck, and coughing. While the cause of SUNCT is often unknown, it has been linked to head trauma.

It's believed that SUNCT headaches originate in the trigeminal nerve, which sends sensory messages to the face and brain. Treatment is generally focused on preventing attacks, and some medications that treat epilepsy or nerve pain can be prescribed. Injections of lidocaine, a local anesthetic, can also be helpful in some cases.

SUNCT "can be very difficult to treat," according to Hope O'Brien, a headache specialist and board member of the National Headache Foundation. She added that it's important to rule out a cyst or tumor as the cause of the pain.

While headaches are very common, SUNCT headaches are so rare, many neurologists haven't seen a case, and headaches are only a small part of neurology training, O'Brien said. She estimates that in the past 15 years, she's treated two or three SUNCT patients.

'I'm not a nervous wreck anymore'

Glover said she felt excited and relieved when she received her diagnosis. "I said, 'This is me. I'm not going to die.'"

However, Glover said living with the condition has been difficult and she's had trouble finding effective treatment. The anti-seizure drugs she took for many years turned her into a "zombie," Glover said.

Around 10 years ago, Glover received treatment for complex PTSD, a form of PTSD resulting from trauma occurring over an extended period of time rather than a single event. That treatment has helped her cope with her headaches and other life stresses, she said.

Glover and her doctors also discovered that naratriptan, a drug used to treat migraines, has been somewhat effective at preventing attacks, which, until recently, were occurring weekly. In April, Glover had surgery to remove her gallbladder, and since then, she's only experienced two attacks.

Glover said she's very grateful to the headache specialist who diagnosed her. "I'm not a nervous wreck anymore," she said. "I know what it is, and I know it will pass." (Boodman, Washington Post, 7/13)

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