Full-Blown Pain: My Fight Against the Enigmatic Suffering of Cluster Headaches

It began on a dreary Monday morning in September 2016. I was working as a educator, attempting to manage a new class, when a intense sensation sprang behind my right eye. Then came quick stabs, like electric shocks. As each class came and went, the pain eased and then came back with greater intensity. Multiple times that day I handed over a teaching assistant with activities and ran to the school bathroom to soak my face with cool water. I took ibuprofen, but the agony remained unrelenting.

The attacks appeared repeatedly that fall, and again in spring, soon forming an yearly pattern. The autumn months were the most severe, then February and March. I could predict the routine: aura in the morning, early pangs on the commute, full-blown agony in the classroom by mid-morning. In late 2019, a doctor eventually sent me to a neurologist and I was diagnosed with cluster headaches.

This condition typically begin with severe discomfort behind a single eye that lasts for three hours.

Approximately one in 1,000 people suffer by the disorder, and men are more frequently affected. Cluster headaches usually begin with sudden, excruciating pain focused on a single eye that peaks within a short time and lasts for as long as three hours. Episodes come in clusters, daily or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or face sweating. There exists an episodic type, which occurs in seasonal bouts; some patients have continuous attacks, characterized by the lack of long symptom-free periods.

What unites sufferers is the intensity. One study scored the sensation at 9.7 out of 10, more severe than broken bones or other conditions. A separate found 64% of cluster patients reported thoughts of self-harm during bouts; the figure fell to 4% when they were pain-free.

One patient, in her seventies, a chronic patient from Wales, isn't surprised. Her episodes started when she was two. “I would hurl myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her condition worsened through her youth. Alcohol in her teens, like many causes, made things worse. After drinking alcohol at her graduation party, she recalls barely being able to see on the transport home.

Her relatives often mistook her episodes as intoxicated behavior. Understanding eventually came from her father and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often hid her condition. She was dismissed from one job, in part due to absences during attacks. Her definitive identification came in the early 2000s at a specialist neurology center.

Still, the failure to plan daily activities around unpredictable pain took its effect. She especially disliked being unable to plan outings, being seen as flaky as a colleague, 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 value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a portable toilet.

Headaches have been described across the ages. “The first account of headache comes by way of the Mesopotamians in 4000BC,” write experts in a publication on the subject. They attributed the disease to an malevolent spirit who attacked his victims' heads.

Historical healing texts suggest bizarre treatments for what some observers would classify as a headache disorder. In the medieval times, migraine was identified as a separate condition, with therapies including herbal concoctions to other, more folk remedies.

It was a European physician who provided the first detailed account of a cluster headache. In his medical observations, he describes a patient “suffering with a very severe headache occurring and disappearing 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 believed to be caused by a issue with a major blood vessel that supplies blood to the brain. Leading experts in treating the disorder note this.

In the late 1990s, researchers released the results of a research project for which they had triggered cluster headaches in patients and monitored the episodes in a brain scanner. The data, published in a major medical publication, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

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

Neurologists say delays in diagnosis and managing happen because patients are rarely seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He works by eliminating other common headache disorders, such as migraine, before confirming the disorder. A detailed history is essential: on which part of the head do signs appear? For how much time? What season? Are there triggers, such as alcohol? Specific characteristics such as redness, sagging eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be referred to specialist clinics. But many first go to emergency rooms or are given unsuitable therapies.

A charity trustee, 78, has suffered from cluster headaches for the majority of her adult life, although she has been free from an episode since recent years. When she was in her twenties, she had her teeth pulled because dentists misunderstood her pain. She believes the dental profession still need greater education. When another patient sought help from a charity, it was Chapman who responded. The author recalls calling a helpline during an attack in 2021; a calm advisor talked them through oxygen therapy and medication until the attack passed.

National guidelines on treatment advise that patients are offered high-flow oxygen and/or a anti-migraine medication administered by injection. No oral painkillers or strong analgesics should be used. Preventive choices include a blood pressure medication, which apparently helps manage the bouts of some individuals.

But leading specialists argue the official guidelines need updating 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.” Short cycles with infrequent attacks are handled with abortive therapy only. Longer or more intense periods require preventives such as certain drugs, sometimes combined 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 discomfort is that decreases nerve activity.

The national guidelines need revising to reflect a