🔗 Share this article

It began on a dreary weekday in the 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 quick stabs, similar to electric shocks. As the school day progressed, the pain eased and then came back with greater intensity. Multiple times that day I left a colleague with activities and hurried to the school bathroom to soak my face with cold water. I tried paracetamol, but the agony remained unrelenting.

The attacks appeared frequently that fall, and once more in spring, soon establishing an annual pattern. The autumn months were the most severe, then the late winter. I could anticipate the pattern: aura in the morning, early twinges on the commute, full-on agony in class by mid-morning. In 2019, a doctor eventually referred me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches typically start with intense discomfort around one eye that lasts for several hours.

Approximately one in 1,000 people suffer by the disorder, and males are more frequently affected. Attacks typically begin with abrupt, excruciating pain 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 associated with tearing eyes, drooping eyelids or facial sweating. There exists the episodic form, which arrives in seasonal bouts; others have continuous cluster headaches, characterized by the absence of extended pain-free periods.

What connects sufferers is the intensity. One research paper scored the sensation at 9.7 10, more severe than bone fractures or other conditions. Another discovered a significant percentage of cluster headache patients experienced thoughts of self-harm amid bouts; the number fell to 4% when they were not in pain.

One patient, in her seventies, a long-term patient from Pembrokeshire, isn't surprised. Her episodes started when she was two. “I would throw myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her condition deteriorated through childhood. Alcohol in her teens, like many triggers, made things worse. After drinking alcohol at her graduation party, she recalls hardly being able to see on the transport home.

Her relatives often interpreted her attacks as drunken behavior. Support eventually came from her father and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after moving, but often concealed her illness. She was dismissed from one job, in part due to absences during episodes. Her definitive identification came in the early 2000s at a national neurology center.

Nevertheless, the inability to plan daily activities around erratic attacks took its effect. She particularly disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It steals from you of the simple freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a facility.

---

Headaches have been described across history. “The earliest account of headache comes by way of the Mesopotamians in 4000BC,” write experts in a book on the topic. They linked the ailment to an malevolent entity who attacked his sufferers' heads.

Historical healing texts suggest unusual remedies for what some observers would describe as a migraine. In the medieval times, severe headache was identified as a separate condition, with treatments ranging from herbal concoctions to other, more superstitious cures.

It was a Dutch doctor who provided the first detailed account of a cluster-type attack. In his writings, he describes a patient “suffering with a very severe headache happening and vanishing daily at specific hours”.

Cluster headaches were only formally recognised by international headache committees in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a key blood vessel that supplies blood to the head. Leading specialists in treating the disorder note this.

In 1998, scientists published the findings of a study for which they had induced attacks in patients and observed the episodes in a brain scanner. The data, published in a major medical publication, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they felt better.

Despite such progress, identification remains delayed. One man's attacks started in 1986 and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he underwent multiple operations before finally being correctly identified in 2014, after a physician researched his complaints.

Neurologists say delays in diagnosis and treatment happen because patients are seldom seen mid-attack. “You're exhausted and low, but not in severe pain,” a doctor says. He proceeds by eliminating other primary head pain conditions, such as migraine, before confirming the disorder. A thorough history is crucial: on which side do symptoms appear? For how much time? What season? Are there precipitating factors, such as alcohol? Certain features such as tearing, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent to dedicated clinics. But many first go to A&E or are given unsuitable treatments.

A charity trustee, in her late seventies, has suffered from cluster headaches for most of her life, although she hasn't had an attack since recent years. When she was in her twenties, she had her molars pulled because dental professionals misinterpreted her pain. 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 support line during an bout in 2021; a calm volunteer guided me through oxygen therapy and medication until the episode passed.

National guidance on management advise that sufferers are offered high-flow oxygen therapy and/or a anti-migraine medication administered by nasal spray. No tablets or strong analgesics should be used. Prophylactic options include verapamil, which apparently soothes the attacks of well-known individuals.

But leading neurologists believe the guidance need revising to reflect a more defined treatment pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is everything: “The duration of the cycle dictates the treatment.” Brief cycles with infrequent episodes are handled with abortive therapy alone. More prolonged or more severe bouts require preventative medications such as certain drugs, sometimes combined with corticosteroids. 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 activity.

The national guidance need revising to reflect a