🔗 Share this article

It was a gloomy Monday morning in the autumn of 2016. I worked as a teacher, trying to settle a new group of students, when a sudden sensation sprang behind my one eye. Then came quick stabs, similar to electric shocks. As the school day came and went, the discomfort eased and then returned with greater intensity. Four times that day I left a colleague with worksheets and hurried to the staff bathroom to soak my face with cold water. I tried aspirin, but the pain remained unbearable.

The headaches returned frequently that fall, and once more in spring, soon forming an yearly cycle. September and October were the most severe, then the late winter. I could anticipate the routine: aura in the shower, early pangs on the train, full-on agony in the classroom by 9.30am. In 2019, a GP eventually sent me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches often begin with intense discomfort behind one eye that lasts for three hours.

Approximately 1 in 1000 people are affected by the condition, and males are more often affected. Cluster headaches usually begin with sudden, severe pain focused on one eye that peaks within a short time and lasts for as long as three hours. Episodes occur in cycles, daily or several times a day, and are accompanied by tearing eyes, sagging eyelids or facial perspiration. There exists an episodic type, which arrives in seasonal cycles; others have continuous attacks, defined by the lack of long pain-free periods.

What unites patients is the severity. One research paper scored the sensation at 9.7 10, more severe than bone fractures or pancreatitis. A separate found 64% of cluster patients reported thoughts of self-harm during attacks; the figure fell to 4% when they were not in pain.

Val Hobbs, in her seventies, a chronic sufferer from Pembrokeshire, finds this understandable. Her attacks started when she was two. “I would throw myself on the ground and bang my head. That was put down to being spoiled,” she says. Her condition deteriorated through childhood. Drinking in her adolescence, similar to several causes, made things worse. After having alcohol at her school leaving party, she recalls hardly being able to see on the transport home.

Her family often interpreted her attacks as drunken behavior. Support eventually came from her parent and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after moving, but often concealed her condition. She was dismissed from one job, partly due to absences during episodes. Her breakthrough diagnosis came in 2002 at a national neurology center.

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

---

Headaches have been described across history. “The first description of headache comes by way of the ancient civilizations in 4000BC,” write authors in a book on the subject. They linked the disease to an evil spirit who afflicted his sufferers' heads.

Ancient medical texts suggest unusual treatments for what modern experts would classify as a migraine. In the middle ages, migraine was recognised as a distinct condition, with therapies ranging from herbal concoctions to other, more superstitious remedies.

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

The disorder were only officially classified by international medical societies in 1988. From the 1960s to the 1990s, they were believed to be caused by a issue with a major artery that supplies blood to the brain. Prominent specialists in diagnosing the disorder note this.

In 1998, scientists published the findings of a study for which they had induced attacks in patients and monitored the episodes in a brain scanner. The data, featured in a major medical publication, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

Despite such progress, diagnosis remains slow. One man's symptoms began in the 1980s and felt like “a balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he had four operations before eventually being diagnosed in recently, after a physician looked up his symptoms.

Specialists say delays in diagnosis and treatment occur because patients are rarely seen mid-attack. “You're tired and depressed, but not in agony,” a doctor says. He works by eliminating other primary head pain disorders, such as tension-type headache, before confirming cluster headaches. A thorough patient history is essential: on which part of the head do symptoms appear? For how long? What time of year? Are there triggers, such as alcohol? Certain features such as tearing, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be referred to specialist centers. But many first arrive to emergency rooms or are given inadequate therapies.

Dorothy Chapman, 78, has suffered from cluster headaches for most of her life, although she has been free from an episode since recent years. When she was in her 20s, she had her molars pulled because dentists misunderstood her symptoms. She thinks dentists still need much more education. When another patient sought help from a support group, it was she who replied. The author recalls calling a support line during an bout in early 2021; a calm volunteer talked them through oxygen therapy and drugs until the episode passed.

Official guidance on treatment recommend that sufferers are offered high-flow oxygen and/or a anti-migraine medication delivered by injection. No oral painkillers or opioids should be used. Prophylactic choices include verapamil, which reportedly soothes the attacks of some people.

But consultant neurologists believe the official guidelines need revising to reflect a clearer treatment pathway and help GPs avoid misprescribing. For episodic patients, timing is critical: “The length of the cycle dictates the treatment.” Brief cycles with infrequent attacks are handled with acute therapy only. Longer or more severe periods require preventative medications such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a bout – an procedure into the area of the head where the discomfort is that reduces nerve signals.

The national guidance need updating to reflect a