🔗 Share this article

It began on a overcast Monday morning in September 2016. I worked as a educator, trying to settle a new group of students, when a sudden sensation sprang behind my right eye. It was followed by rapid jolts, like electric shocks. As the school day came and went, the discomfort subsided and then returned with increased force. Four times that day I handed over a teaching assistant with worksheets and ran to the staff bathroom to soak my face with cold water. I took paracetamol, but the pain remained unbearable.

The attacks returned frequently that autumn, and again in spring, soon forming an yearly pattern. September and October were the most severe, then February and March. I could predict the routine: aura in the shower, early twinges on the commute, full-on pain in class by 9.30am. In 2019, a GP finally sent me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches often start with intense discomfort behind a single eye that lasts for several hours.

Approximately 1 in 1000 individuals are affected by the condition, and males are more frequently diagnosed. Attacks typically begin with abrupt, excruciating agony focused on a single eye that peaks within minutes and lasts for as long as three hours. Attacks come in clusters, every day or several times a day, and are accompanied by tearing eyes, sagging eyelids or facial perspiration. There exists the episodic form, which arrives in periodic bouts; others have chronic attacks, defined by the absence of extended symptom-free periods.

What unites sufferers is the severity. One research paper rated the pain at 9.7 10, more severe than broken bones or pancreatitis. A separate discovered 64% of cluster headache patients experienced thoughts of self-harm during bouts; the figure dropped to 4% when they were pain-free.

One patient, in her seventies, a chronic sufferer from Wales, isn't surprised. Her attacks 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 childhood. Drinking in her teens, like many causes, made things worse. After drinking sherry at her school leaving party, she recalls barely being able to see on the bus home.

Her relatives often interpreted her episodes as intoxicated episodes. Support finally came from her father and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after relocating, but often concealed her condition. She was fired from one job, partly due to time off during attacks. Her breakthrough diagnosis came in 2002 at a national neurology center.

Nevertheless, the failure to organize life around erratic attacks took its toll. She especially disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her children during the incapacitation caused by the worst episodes. “It steals from you of the simple freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a portable toilet.

---

Headaches have been documented across history. “The earliest description of headache originates from the Mesopotamians in 4000BC,” write experts in a book on the subject. They linked the disease to an evil entity who afflicted his sufferers' heads.

Historical medical texts suggest unusual remedies for what some experts would classify as a headache disorder. In the middle ages, migraine was recognised as a distinct disorder, with therapies ranging from herbal concoctions to other, more superstitious cures.

It was a Dutch doctor who provided the first comprehensive account of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very severe headache happening and disappearing daily at specific hours”.

The disorder were only officially classified by international headache societies in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a key artery which supplies blood to the brain. Prominent experts in treating the condition explain this.

In the late 1990s, scientists released the results of a study for which they had induced cluster headaches in patients and observed the attacks in a imaging machine. The results, featured in a prominent journal, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

In spite of such progress, identification remains delayed. Jamie Charteris's attacks began in the 1980s and felt like “a balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he had multiple operations before finally being correctly identified in recently, after a doctor researched his symptoms.

Specialists 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 confirming cluster headaches. A thorough patient history is crucial: on which side do symptoms appear? For how much time? What season? Are there triggers, such as alcohol? Specific features such as redness, drooping eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be referred to specialist clinics. But many first arrive to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for most of her life, although she has been free from an attack since 2016. When she was in her 20s, she had her molars extracted because dental professionals misinterpreted her pain. She believes dentists still need much more education. When another patient sought help from a support group, it was Chapman who replied. I remember calling a helpline during an bout in early 2021; a reassuring volunteer guided me through oxygen therapy and drugs until the attack passed.

Official guidelines on treatment advise that patients are offered high-dose oxygen and/or a anti-migraine drug administered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive options include a blood pressure medication, which reportedly helps manage the attacks of some people.

But consultant specialists argue the guidance need revising to reflect a more defined clinical pathway and help GPs avoid misprescribing. For episodic patients, the treatment window is critical: “The duration of the cycle dictates the treatment.” Brief cycles with occasional episodes are handled with acute treatment only. More prolonged or more severe bouts require preventives such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the head where the pain is that decreases nerve activity.

The national guidelines need revising to reflect a