🔗 Share this article

It was a dreary Monday in the morning in September 2016. I worked as a educator, trying to settle a new class, when a sharp sensation bloomed behind my right eye. This was followed by quick stabs, similar to electric shocks. As each class progressed, the discomfort subsided and then returned with greater intensity. Multiple times that day I left a teaching assistant with worksheets and ran to the staff bathroom to douse my face with cold water. I tried ibuprofen, but the agony remained unbearable.

The attacks appeared frequently that fall, and again in spring, soon establishing an yearly pattern. The autumn months were the most severe, then February and March. I could anticipate the pattern: aura in the morning, early twinges on the train, full-blown pain in the classroom by mid-morning. In 2019, a doctor eventually sent me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often start with intense pain behind one eye that lasts up to three hours.

Approximately 1 in 1000 people are affected by the condition, and men are more frequently affected. Cluster headaches typically start with abrupt, severe agony focused on one eye that reaches its peak within minutes and lasts for as long as three hours. Episodes come in clusters, every day or several times a day, and are associated with red or watery eyes, sagging eyelids or face perspiration. There exists the episodic form, which arrives in seasonal bouts; others have continuous attacks, characterized by the lack of long pain-free periods.

What unites sufferers is the severity. One research paper scored the pain at 9.7 out of 10, more severe than broken bones or pancreatitis. Another found 64% of cluster patients reported suicidal thoughts amid bouts; the number fell to 4% when they were pain-free.

Val Hobbs, 74, a chronic patient from Wales, finds this understandable. Her episodes started when she was a toddler. “I would throw myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her condition deteriorated through her youth. Alcohol in her teens, similar to many causes, made things worse. After having alcohol at her graduation party, she recalls hardly being able to see on the transport home.

Her family often mistook her episodes as intoxicated episodes. Support eventually came from her father and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often concealed her illness. She was fired from one job, partly due to time off during episodes. Her breakthrough diagnosis came in 2002 at a national hospital.

Nevertheless, the inability to organize life around erratic attacks took its toll. She especially disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a facility.

---

Headaches have been described throughout history. “The earliest description of headache comes by way of the ancient civilizations in 4000BC,” write authors in a publication on the topic. They linked the ailment to an evil spirit who attacked his victims' heads.

Ancient medical texts suggest bizarre treatments for what modern experts would describe as a headache disorder. In the middle ages, severe headache was recognised as a separate condition, with therapies including bloodletting to other, more superstitious remedies.

It was a European physician who provided the initial comprehensive account of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very severe headache occurring and vanishing daily at fixed hours”.

Cluster headaches were only formally classified by international headache committees in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a major artery that supplies blood to the head. Prominent experts in diagnosing the disorder note this.

In the late 1990s, scientists released the results of a research project for which they had triggered attacks in patients and observed the attacks in a brain scanner. The results, published in a prominent journal, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they felt better.

In spite of such advances, diagnosis remains slow. Jamie Charteris's symptoms began in the 1980s and felt like “a balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he had multiple surgeries before eventually being correctly identified in 2014, after a physician researched his symptoms.

Neurologists say delays in diagnosis and treatment happen because patients are seldom seen mid-attack. “You're tired and low, but not in severe pain,” a doctor says. He proceeds by ruling out other primary head pain conditions, such as tension-type headache, before confirming cluster headaches. A thorough patient history is essential: on which part of the head do signs occur? For how long? What season? Are there precipitating factors, such as certain foods? Specific features such as redness, sagging eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be referred to specialist clinics. But many first arrive to emergency rooms or are given inadequate therapies.

Dorothy Chapman, 78, has experienced the condition for most of her adult life, although she hasn't had an episode since 2016. When she was in her 20s, she had her molars pulled because dental professionals misunderstood her pain. She thinks dentists still need much more education. When another patient sought help from a support group, it was Chapman who responded. The author recalls calling a support line during an bout in early 2021; a reassuring volunteer guided me through oxygen therapy and drugs until the attack passed.

Official guidance on management recommend that sufferers are offered high-flow oxygen therapy and/or a anti-migraine medication delivered by injection. No tablets or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which reportedly soothes the bouts of well-known individuals.

But consultant neurologists argue the official guidelines need updating to reflect a more defined clinical pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the cycle determines the approach.” Brief cycles with infrequent attacks are handled with acute treatment alone. More prolonged or more intense bouts require preventative medications such as certain drugs, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the area of the skull where the pain is that decreases nerve signals.

The national guidance need revising to reflect a