🔗 Share this article

It began on a overcast weekday in the morning in the autumn of 2016. I worked as a teacher, attempting to manage a new group of students, when a sharp sensation sprang behind my one eye. Then came quick stabs, reminiscent of electric shocks. As each class came and went, the discomfort eased and then returned with greater force. Four times that day I left a teaching assistant with worksheets and ran to the school bathroom to douse my face with cold water. I took aspirin, but the agony remained unbearable.

The headaches appeared repeatedly that fall, and again in the spring, soon forming an yearly pattern. September and October were the worst, then the late winter. I could anticipate the pattern: a warning sensation in the morning, early pangs on the train, full-blown agony in class by 9.30am. In 2019, a doctor finally sent me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches typically start with severe discomfort behind one eye that lasts up to several hours.

About 1 in 1000 individuals are affected by the disorder, and males are more often affected. Cluster headaches typically begin with abrupt, excruciating pain focused on a single eye that peaks within minutes and continues for as long as three hours. Attacks occur in cycles, daily or several times a day, and are associated with red or watery eyes, sagging eyelids or facial sweating. There exists an episodic type, which arrives in seasonal cycles; others have continuous attacks, defined by the lack of extended pain-free periods.

What connects sufferers is the intensity. One research paper scored the sensation at 9.7 out of 10, more severe than broken bones or other conditions. Another found a significant percentage of cluster patients experienced suicidal thoughts amid attacks; the number dropped to 4% when they were not in pain.

Val Hobbs, in her seventies, a chronic patient from Wales, isn't surprised. Her attacks started when she was two. “I would throw myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through her youth. Alcohol in her teens, similar to several causes, made things worse. After drinking alcohol at her graduation party, she recalls hardly being able to see on the bus home.

Her relatives often interpreted her episodes as drunken behavior. Support eventually came from her parent and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after moving, but often concealed her illness. She was fired from one job, partly due to absences during episodes. Her definitive identification came in 2002 at a specialist neurology center.

Nevertheless, the failure to organize daily activities around erratic attacks 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 children during the incapacitation caused by the worst episodes. “It robs you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a portable toilet.

---

Headaches have been documented throughout the ages. “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 spirit who afflicted his sufferers' heads.

Historical healing texts suggest bizarre remedies for what some experts would classify as a migraine. In the middle ages, severe headache was recognised as a separate disorder, with treatments including herbal concoctions to other, more superstitious cures.

It was a European physician who provided the first comprehensive description of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very severe headache occurring and vanishing each day at fixed hours”.

Cluster headaches 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 key blood vessel which delivers blood to the brain. Leading experts in treating the condition note this.

In 1998, researchers released the findings of a study for which they had triggered cluster headaches in patients and monitored the attacks in a imaging machine. The results, featured in a prominent journal, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

In spite of such advances, identification remains delayed. One man's symptoms began in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he had four surgeries before finally being diagnosed in recently, after a physician looked up his complaints.

Neurologists say wait times in diagnosis and managing happen because patients are seldom seen during an episode. “You're exhausted and depressed, but not in severe pain,” one says. He proceeds by eliminating other primary head pain conditions, such as tension-type headache, before confirming cluster headaches. A thorough history is essential: on which side do signs appear? For how long? What time of year? Are there precipitating factors, such as alcohol? Certain characteristics such as redness, sagging eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be sent to dedicated clinics. But many first go to A&E or are given unsuitable treatments.

A charity trustee, 78, has suffered from cluster headaches for the majority of her life, although she has been free from an attack since 2016. When she was in her 20s, she had her molars pulled because dentists misunderstood her pain. She believes dentists still need much more education. When another patient sought help from a charity, it was Chapman who replied. The author recalls calling a support line during an bout in 2021; a calm advisor guided them through oxygen therapy and medication until the episode eased.

National guidance on management advise that sufferers are offered high-dose oxygen and/or a specific medication delivered by injection. No tablets or opioids should be used. Preventive choices include verapamil, which apparently helps manage the bouts of well-known people.

But consultant neurologists believe the official guidelines need revising to reflect a clearer treatment process and help GPs avoid misprescribing. For episodic patients, the treatment window is everything: “The duration of the bout dictates the treatment.” Short cycles with infrequent attacks are managed with acute treatment alone. More prolonged or more intense bouts require preventives such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the side of the head where the pain is that decreases nerve activity.

The national guidelines need updating to reflect a