🔗 Share this article

It was a dreary weekday morning in the autumn of 2016. I worked as a educator, trying to settle a new class, when a intense sensation sprang behind my one eye. Then came rapid jolts, reminiscent of lightning bolts. As each class progressed, the pain subsided and then returned with increased force. Multiple times that day I handed over a colleague with worksheets and hurried to the school bathroom to douse my face with cold water. I tried paracetamol, but the agony remained unrelenting.

The attacks appeared frequently that fall, and once more in the spring, soon establishing an yearly pattern. The autumn months were the worst, then February and March. I could anticipate the pattern: a warning sensation in the morning, early pangs on the commute, full-on pain in class by mid-morning. In late 2019, a doctor finally referred me to a specialist and I was diagnosed with cluster headaches.

This condition typically start with severe pain around a single eye that lasts for three hours.

Approximately one in 1,000 people suffer by the condition, and males are more often affected. Attacks usually start with sudden, severe agony focused on a single eye that peaks within a short time and continues for up to three hours. Episodes occur in cycles, daily or multiple times a day, and are associated with red or watery eyes, drooping eyelids or facial sweating. There exists the episodic form, which occurs in periodic cycles; some patients have continuous cluster headaches, characterized by the lack of long symptom-free periods.

What unites sufferers is the severity. One study scored the sensation at 9.7 out of 10, higher than bone fractures or other conditions. Another discovered a significant percentage of cluster patients experienced suicidal thoughts during attacks; the figure fell to 4% when they were pain-free.

One patient, 74, a chronic sufferer from Wales, finds this understandable. Her attacks started when she was two. “I would hurl myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her condition worsened through her youth. Drinking in her teens, like several causes, made things more intense. After having alcohol at her graduation party, she recalls hardly being able to see on the bus home.

Her relatives often mistook her attacks as drunken behavior. Support eventually came from her parent and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after moving, but often hid her condition. She was dismissed from one job, in part due to time off during episodes. Her breakthrough identification came in 2002 at a specialist hospital.

Still, the failure to organize daily activities around erratic pain took its effect. She especially disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack inside a portable toilet.

---

Headaches have been documented across the ages. “The first description of headache comes by way of the ancient civilizations in 4000BC,” write authors in a publication on the subject. They linked the disease to an malevolent entity who attacked his victims' heads.

Historical healing records propose bizarre treatments for what modern experts would classify as a migraine. In the middle ages, migraine was identified as a distinct disorder, with therapies ranging from herbal concoctions to other, more superstitious cures.

It was a Dutch doctor who provided the initial comprehensive account of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very severe headache happening and disappearing each day at fixed hours”.

Cluster headaches were only formally recognised by international headache committees in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a major artery which delivers blood to the brain. Leading specialists in treating the disorder explain this.

In 1998, researchers released the results of a research project for which they had triggered attacks in patients and observed the episodes in a imaging machine. The results, featured in a major journal, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

In spite of such progress, diagnosis remains delayed. Jamie Charteris's attacks started in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he underwent multiple operations before eventually being diagnosed in recently, after a doctor looked up his complaints.

Neurologists say wait times in diagnosing and managing happen because patients are seldom seen during an episode. “You're exhausted and depressed, but not in agony,” one says. He works by eliminating other primary head pain disorders, such as migraine, before diagnosing the disorder. A detailed history is essential: on which part of the head do symptoms occur? For how long? What season? Are there triggers, such as certain foods? Specific characteristics such as redness, drooping eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be referred to dedicated centers. But a lot of first go to emergency rooms or are given inadequate therapies.

A charity trustee, in her late seventies, has suffered from the condition for most of her adult life, although she hasn't had an attack since recent years. When she was in her twenties, she had her teeth extracted because dental professionals misinterpreted her symptoms. She believes the dental profession still need much more education. When another patient sought help from a charity, it was she who responded. I remember calling a support line during an attack in early 2021; a calm volunteer guided them through oxygen treatment and medication until the attack passed.

Official guidelines on treatment advise that patients are offered high-dose oxygen and/or a specific drug delivered by injection. No oral painkillers or strong analgesics should be used. Prophylactic choices include verapamil, which reportedly helps manage the attacks of well-known individuals.

But leading specialists believe the official guidelines need revising to reflect a more defined clinical pathway and help GPs avoid misprescribing. For periodic patients, timing is critical: “The length of the cycle dictates the approach.” Short cycles with infrequent attacks are handled with acute treatment alone. Longer or more intense bouts require preventative medications such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the side of the skull where the pain is that reduces nerve signals.

The national guidance need updating to reflect a