Full-Blown Suffering: My Fight With the Puzzling Pain of Cluster Headache Syndrome

It began on a gloomy weekday morning in the autumn of 2016. I worked as a teacher, trying to settle a new group of students, when a sudden sensation erupted behind my right eye. Then came quick jolts, similar to electric shocks. As the school day came and went, the pain subsided and then returned with increased intensity. Four times that day I handed over a teaching assistant with activities and ran to the staff bathroom to soak my face with cool water. I tried paracetamol, but the agony remained unbearable.

The attacks appeared repeatedly that fall, and once more in the spring, soon forming an yearly cycle. The autumn months were the worst, then the late winter. I could predict the routine: aura in the shower, early twinges on the train, full-on pain in the classroom by mid-morning. In 2019, a doctor eventually sent me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches often start with intense discomfort around one eye that lasts for several hours.

About one in 1,000 individuals suffer by the condition, and men are more often diagnosed. Attacks usually start with sudden, excruciating pain focused on one eye that reaches its peak within minutes and lasts for up to three hours. Episodes occur in cycles, every day or multiple times a day, and are associated with tearing eyes, sagging eyelids or face sweating. I have an episodic type, which arrives in seasonal bouts; others have chronic attacks, characterized by the lack of long pain-free periods.

What connects sufferers is the intensity. One study scored the pain at 9.7 out of 10, more severe than broken bones or pancreatitis. A separate found a significant percentage of cluster patients reported suicidal thoughts amid bouts; the number fell to four percent when they were not in pain.

One patient, in her seventies, a long-term patient from Wales, finds this understandable. Her episodes started when she was a toddler. “I would hurl myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through her youth. Alcohol in her teens, similar to many causes, made things more intense. After having alcohol at her graduation party, she remembers barely being able to see on the bus home.

Her family often mistook her episodes as drunken behavior. Support finally came from her father and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took 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 national hospital.

Still, the inability to plan life around erratic pain 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 children during the incapacitation 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 winning tickets for a major concert, only to have an episode inside a facility.

Headaches have been described throughout history. “The earliest description of headache originates from the Mesopotamians in antiquity,” write authors in a book on the subject. They linked the ailment to an evil spirit who attacked his sufferers' heads.

Ancient medical records suggest unusual remedies for what modern observers would describe as a headache disorder. In the middle ages, migraine was recognised as a distinct disorder, with therapies ranging from herbal concoctions to other, more folk remedies.

It was a European doctor who provided the first detailed account of a cluster headache. In his medical observations, he describes a patient “afflicted with a very intense headache occurring and disappearing daily at fixed hours”.

The disorder were only formally classified by global medical committees in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a problem with a key artery that delivers blood to the brain. Leading experts in diagnosing the condition note this.

In 1998, scientists released the results of a study for which they had triggered cluster headaches in patients and monitored the attacks in a brain scanner. The data, featured in a prominent 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 felt better.

In spite of such progress, identification remains delayed. One man's symptoms started in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he had four operations before eventually being diagnosed in 2014, after a physician looked up his symptoms.

Specialists say delays in diagnosis and treatment happen because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in agony,” one says. He works by ruling out other primary head pain disorders, such as tension-type headache, before confirming cluster headaches. A thorough patient history is essential: on which side do signs occur? For how long? What season? Are there precipitating factors, such as alcohol? Certain features such as tearing, sagging eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be sent to dedicated clinics. But many first go to emergency rooms or are given inadequate treatments.

A charity trustee, 78, has suffered from the condition for the majority of her life, although she hasn't had an episode since recent years. When she was in her twenties, she had her teeth pulled because dentists misinterpreted her pain. She thinks the dental profession still need much more education. When a sufferer sought help from a charity, it was she who replied. I remember calling a support line during an attack in 2021; a reassuring advisor guided them through oxygen treatment and medication until the attack passed.

National guidelines on treatment advise that patients are offered high-dose oxygen and/or a specific medication administered by nasal spray. No oral painkillers or opioids should be used. Prophylactic choices include a blood pressure medication, which reportedly helps manage the attacks of well-known people.

But consultant specialists argue the guidance need revising to reflect a clearer treatment process and help GPs avoid misprescribing. For periodic patients, the treatment window is everything: “The duration of the cycle determines the treatment.” Short cycles with occasional episodes are handled with abortive therapy only. More prolonged or more intense bouts require preventative medications such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the head where the discomfort is that reduces nerve activity.

The official guidance need updating to reflect a