🔗 Share this article

It began on a overcast Monday morning in September 2016. I was working as a educator, trying to settle a new group of students, when a intense pain sprang behind my right eye. This was followed by rapid shocks, like lightning bolts. As each class progressed, the discomfort eased and then came back with greater intensity. Four times that day I left a colleague with activities and hurried to the school bathroom to douse my face with cold water. I took paracetamol, but the agony remained unbearable.

The attacks returned frequently that fall, and once more in spring, soon establishing an yearly pattern. September and October were the worst, then February and March. I could predict the pattern: aura in the morning, early twinges on the train, full-on pain in the classroom by 9.30am. In late 2019, a doctor finally referred me to a neurologist and I was diagnosed with cluster headache disorder.

Cluster headaches typically start with intense pain behind one eye that lasts for three hours.

Approximately 1 in 1000 individuals are affected by the condition, and males are more often diagnosed. Cluster headaches usually begin with abrupt, excruciating agony focused on a single eye that peaks within a short time and continues for as long as three hours. Attacks occur in cycles, every day or several times a day, and are accompanied by tearing eyes, drooping eyelids or face perspiration. There exists the episodic form, which occurs in periodic bouts; others have continuous cluster headaches, characterized by the lack of long symptom-free periods.

What unites sufferers is the intensity. One study rated the sensation at 9.7 out of 10, higher than broken bones or other conditions. Another discovered a significant percentage of cluster patients reported suicidal thoughts amid attacks; the figure fell to 4% when they were pain-free.

Val Hobbs, in her seventies, a long-term sufferer from Wales, finds this understandable. Her attacks began when she was a toddler. “I would throw myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her condition worsened through her youth. Alcohol in her teens, similar to several triggers, made things more intense. After having sherry at her school leaving party, she recalls barely being able to see on the transport home.

Her family often mistook her attacks as drunken episodes. Understanding eventually came from her parent and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after moving, but often hid her illness. She was fired from one job, in part due to absences during episodes. Her breakthrough diagnosis came in the early 2000s at a national neurology center.

Still, the failure to plan life around unpredictable pain took its toll. She particularly disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a facility.

---

Headaches have been documented throughout history. “The earliest account of headache originates from the ancient civilizations in 4000BC,” write authors in a book on the subject. They linked the ailment to an evil spirit who attacked his victims' heads.

Historical healing texts propose bizarre treatments for what modern experts would classify as a headache disorder. In the middle ages, severe headache was identified as a distinct disorder, with therapies including bloodletting to other, more superstitious remedies.

It was a Dutch doctor who provided the initial detailed account of a cluster headache. In his writings, he describes a patient “afflicted with a very severe headache occurring and vanishing daily at fixed hours”.

The disorder were only formally classified by global headache committees in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a issue with a key artery which supplies blood to the brain. Prominent experts in treating the disorder explain this.

In 1998, researchers published the findings of a study for which they had triggered cluster headaches in patients and observed the episodes in a imaging machine. The data, published in a prominent journal, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

In spite of such progress, diagnosis remains slow. Jamie Charteris's attacks started in 1986 and felt like “a balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he underwent four surgeries before eventually being correctly identified in 2014, after a doctor looked up his complaints.

Neurologists say delays in diagnosis and treatment occur because patients are rarely seen during an episode. “You're tired and depressed, but not in severe pain,” one says. He proceeds by ruling out other primary headache disorders, such as migraine, before diagnosing the disorder. A thorough patient history is essential: on which part of the head do signs occur? For how long? What season? Are there triggers, such as alcohol? Certain characteristics such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be sent to dedicated centers. But a lot of first go to A&E or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for most of her adult life, although she hasn't had an episode since 2016. When she was in her twenties, she had her teeth extracted because dentists misunderstood her symptoms. She thinks the dental profession still need greater awareness. When a sufferer sought help from a support group, it was Chapman who replied. I remember calling a helpline during an attack in early 2021; a calm advisor talked me through oxygen therapy and drugs until the attack eased.

Official guidance on management advise that sufferers are offered high-flow oxygen and/or a specific medication administered by nasal spray. No tablets or opioids should be used. Preventive options include verapamil, which apparently soothes the bouts of some people.

But leading neurologists argue the guidance need updating to reflect a more defined clinical process and help general practitioners avoid misprescribing. For episodic patients, timing is critical: “The duration of the bout determines the treatment.” Short cycles with occasional attacks are managed with abortive treatment only. More prolonged or more intense periods require preventives such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the side of the skull where the pain is that reduces nerve activity.

The official guidelines need updating to reflect a