Unbearable Pain: My Struggle With the Mysterious Suffering of Cluster Headaches

It began on a gloomy Monday in the morning in the autumn of 2016. I was working as a educator, trying to settle a new class, when a sudden pain bloomed behind my right eye. Then came quick jolts, reminiscent of lightning bolts. As the school day progressed, the pain eased and then returned with greater intensity. Multiple times that day I left a teaching assistant with activities and ran to the school bathroom to soak my face with cool water. I tried paracetamol, but the agony remained unbearable.

The attacks appeared repeatedly that fall, and again in the spring, soon forming an annual pattern. September and October were the worst, then the late winter. I could predict the routine: a warning sensation in the shower, early twinges on the commute, full-blown pain in the classroom by mid-morning. In late 2019, a doctor finally sent me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches typically begin with severe pain around a single eye that lasts up to several hours.

Approximately 1 in 1000 individuals suffer by the disorder, and males are more frequently diagnosed. Cluster headaches typically begin with sudden, excruciating pain around one eye that reaches its peak within a short time and continues for up to three hours. Attacks occur in cycles, daily or several times a day, and are accompanied by red or watery eyes, drooping eyelids or facial perspiration. I have the episodic form, which arrives in seasonal cycles; some patients have chronic cluster headaches, characterized by the absence of long pain-free periods.

What connects sufferers is the severity. One research paper scored the sensation at 9.7 out of 10, higher than bone fractures or other conditions. A separate discovered 64% of cluster headache patients experienced thoughts of self-harm amid attacks; the figure dropped to four percent when they were pain-free.

One patient, in her seventies, a chronic patient from Wales, finds this understandable. Her attacks started when she was a toddler. “I would throw myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her condition worsened through childhood. Drinking in her teens, like several causes, made things more intense. After having alcohol at her school leaving party, she recalls hardly being able to see on the transport home.

Her relatives often mistook her attacks as drunken episodes. Understanding finally came from her parent and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after moving, but often concealed her condition. She was dismissed from one job, partly due to time off during attacks. Her definitive identification came in the early 2000s at a specialist hospital.

Nevertheless, the failure to organize life around erratic attacks took its effect. She especially hated being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It steals from you of the small freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack inside a facility.

Headaches have been documented across the ages. “The first account of headache originates from the Mesopotamians in antiquity,” write authors in a book on the subject. They attributed the disease to an malevolent spirit who attacked his victims' heads.

Historical healing texts propose unusual remedies for what modern experts would classify as a headache disorder. In the middle ages, severe headache was recognised as a distinct disorder, with therapies including herbal concoctions to other, more folk remedies.

It was a Dutch physician who provided the first comprehensive account of a cluster headache. In his medical observations, he describes a patient “afflicted with a very severe headache happening and vanishing daily at fixed hours”.

The disorder were only formally recognised by global headache committees in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a key artery that supplies blood to the brain. Leading specialists in diagnosing the condition explain this.

In 1998, researchers published the results of a research project for which they had triggered cluster headaches in patients and observed the attacks in a brain scanner. The data, published in a major journal, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

In spite of such progress, identification remains delayed. One man's attacks began in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he underwent multiple operations before eventually being diagnosed in recently, after a doctor researched his complaints.

Specialists say wait times in diagnosis and treatment occur because patients are seldom seen during an episode. “You're exhausted and low, but not in severe pain,” a doctor says. He works by ruling out other common head pain disorders, such as migraine, before diagnosing cluster headaches. A detailed patient history is essential: on which side do symptoms appear? For how much time? What season? Are there precipitating factors, such as certain foods? Specific features such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent to dedicated centers. But many first go to A&E or are given inadequate therapies.

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

Official guidance on management advise that patients are offered high-flow oxygen therapy and/or a anti-migraine drug administered by nasal spray. No tablets or strong analgesics should be used. Preventive options include a blood pressure medication, which reportedly helps manage the attacks of some individuals.

But leading specialists believe the guidance need revising to reflect a clearer clinical process and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The length of the bout dictates the treatment.” Brief cycles with occasional episodes are managed with abortive therapy alone. More prolonged or more intense periods require preventative medications such as verapamil, sometimes paired with steroids. Many 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 signals.

The official guidelines need revising to reflect a