🔗 Share this article

It was a overcast Monday morning in the autumn of 2016. I was working as a educator, trying to settle a new group of students, when a sudden sensation bloomed behind my right eye. This was followed by quick stabs, similar to electric shocks. As each class progressed, the pain subsided and then returned with greater intensity. Multiple times that day I handed over a colleague with activities and ran to the staff bathroom to soak my face with cold water. I tried paracetamol, but the pain remained unbearable.

The headaches appeared repeatedly that fall, and again in spring, soon forming an annual pattern. September and October were the worst, then February and March. I could anticipate the pattern: a warning sensation in the shower, early twinges on the train, full-blown agony in the classroom by mid-morning. In 2019, a GP finally referred me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches often start with intense pain around a single eye that persists up to three hours.

Approximately 1 in 1000 people suffer by the condition, and men are more frequently diagnosed. Attacks usually start with sudden, severe agony focused on one eye that peaks within a short time and continues for up to three hours. Episodes come in clusters, daily or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or facial perspiration. I have the episodic form, which occurs in seasonal cycles; others have continuous cluster headaches, defined by the lack of long pain-free periods.

What connects sufferers is the intensity. One research paper rated the pain at 9.7 out of 10, higher than bone fractures or pancreatitis. A separate found a significant percentage of cluster headache patients experienced thoughts of self-harm amid attacks; the number fell to 4% when they were not in pain.

One patient, 74, a long-term sufferer from Pembrokeshire, finds this understandable. Her attacks began when she was a toddler. “I would throw myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her condition worsened through childhood. Alcohol in her adolescence, like several causes, made things worse. After having sherry at her graduation party, she recalls hardly being able to see on the transport home.

Her relatives often interpreted her attacks as intoxicated episodes. Understanding eventually came from her father and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after relocating, but often hid her condition. She was fired from one job, in part due to time off during episodes. Her breakthrough identification came in the early 2000s at a specialist hospital.

Still, the inability to organize daily activities around unpredictable attacks took its toll. She particularly disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a facility.

---

Headaches have been described across the ages. “The earliest description of headache originates from the Mesopotamians in 4000BC,” write authors in a book on the topic. They attributed the disease to an evil entity who afflicted his sufferers' heads.

Historical medical records suggest bizarre treatments for what modern experts would classify as a headache disorder. In the middle ages, severe headache was recognised as a distinct condition, with therapies including herbal concoctions to other, more folk cures.

It was a Dutch physician who provided the initial detailed description of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very intense headache occurring and vanishing each day at fixed hours”.

Cluster headaches were only formally recognised by international medical committees in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a key artery which supplies blood to the brain. Leading specialists in diagnosing the disorder explain this.

In 1998, researchers released the results of a study for which they had induced cluster headaches in patients and monitored the attacks in a brain scanner. The data, published in a prominent medical publication, showed activation 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 advances, diagnosis remains delayed. One man's attacks began in 1986 and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he underwent four surgeries before eventually being correctly identified in recently, after a physician looked up his symptoms.

Neurologists say wait times in diagnosis and treatment happen because patients are seldom seen mid-attack. “You're tired and low, but not in severe pain,” one says. He works by ruling out other primary headache conditions, such as migraine, before diagnosing cluster headaches. A thorough history is crucial: on which side do symptoms occur? For how long? What time of year? Are there precipitating factors, such as alcohol? Specific features such as redness, drooping eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be referred to specialist centers. But many first go to A&E or are given inadequate therapies.

Dorothy Chapman, 78, has experienced cluster headaches for most of her life, although she has been free from an attack since recent years. When she was in her 20s, she had her molars pulled because dentists misinterpreted her pain. She thinks the dental profession still need much more education. When another patient sought help from a support group, it was Chapman who replied. The author recalls calling a helpline during an attack in 2021; a calm advisor guided them through oxygen treatment and medication until the episode eased.

Official guidance on treatment recommend that patients are offered high-dose oxygen therapy and/or a anti-migraine drug administered by injection. No tablets or strong analgesics should be used. Preventive choices include a blood pressure medication, which reportedly soothes the bouts of well-known individuals.

But leading specialists argue the guidance need revising to reflect a more defined clinical process and help general practitioners avoid misprescribing. For periodic patients, timing is everything: “The duration of the bout determines the treatment.” Brief cycles with occasional episodes are managed with acute therapy alone. Longer or more severe bouts require preventative medications such as verapamil, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the area of the head where the pain is that decreases nerve activity.

The official guidance need revising to reflect a