Unbearable Pain: My Battle Against the Puzzling Suffering of Cluster Headaches

It was a gloomy Monday morning in the autumn of 2016. I was working as a teacher, trying to settle a new class, when a sharp sensation bloomed behind my one eye. It was followed by rapid shocks, like lightning bolts. As each class came and went, the discomfort subsided and then returned with greater force. Four times that day I left a colleague with worksheets and ran to the staff bathroom to douse my face with cold water. I tried aspirin, but the agony remained unrelenting.

The attacks returned frequently that fall, and again in the spring, soon forming an yearly cycle. The autumn months were the most severe, then February and March. I could predict the routine: aura in the morning, early twinges on the train, full-blown pain in the classroom by 9.30am. In 2019, a GP finally sent me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches typically begin with severe discomfort around one eye that lasts for three hours.

Approximately 1 in 1000 people suffer by the disorder, and men are more frequently affected. Attacks usually begin with abrupt, severe pain around one eye that peaks within a short time and continues for as long as three hours. Attacks come in clusters, every day or several times a day, and are accompanied by tearing eyes, sagging eyelids or facial perspiration. I have the episodic form, which arrives in seasonal cycles; some patients have continuous cluster headaches, characterized by the lack of extended pain-free periods.

What connects sufferers is the intensity. One research paper rated the pain at 9.7 out of 10, more severe than broken bones or other conditions. Another discovered a significant percentage of cluster patients reported suicidal thoughts during bouts; the figure fell to 4% when they were not in pain.

One patient, in her seventies, a long-term sufferer from Wales, isn't surprised. Her episodes started when she was a toddler. “I would hurl myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through her youth. Drinking in her teens, like several triggers, made things more intense. After having sherry at her graduation party, she remembers barely being able to see on the bus home.

Her relatives often mistook her attacks as drunken behavior. Support eventually came from her father and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after moving, but often hid her condition. She was dismissed from one job, in part due to time off during episodes. Her breakthrough diagnosis came in 2002 at a specialist hospital.

Still, the failure to plan daily activities around erratic attacks took its toll. She especially hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It steals from you of the simple liberties 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 portable toilet.

Headaches have been documented across the ages. “The first account of headache originates from the ancient civilizations in antiquity,” write authors in a publication on the topic. They linked the ailment to an malevolent spirit who afflicted his victims' heads.

Historical medical texts suggest unusual treatments for what modern observers would classify as a headache disorder. In the medieval times, severe headache was identified as a distinct condition, with treatments ranging from bloodletting to other, more folk remedies.

It was a European physician who provided the initial comprehensive account of a cluster headache. In his writings, he describes a patient “suffering with a very severe headache occurring and disappearing daily at specific hours”.

The disorder were only formally recognised by international headache societies in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a major artery which supplies blood to the brain. Leading experts in treating the disorder note this.

In the late 1990s, scientists published the findings of a research project for which they had triggered cluster headaches in patients and observed the attacks in a imaging machine. The results, published in a prominent journal, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they felt better.

Despite such progress, identification remains delayed. One man's attacks began in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he had multiple surgeries before eventually being correctly identified in 2014, after a physician looked up his complaints.

Specialists say wait times in diagnosing and treatment happen because patients are rarely seen during an episode. “You're exhausted and depressed, but not in severe pain,” a doctor says. He proceeds by ruling out other common head pain disorders, such as tension-type headache, before confirming the disorder. A thorough patient history is crucial: on which part of the head do signs appear? For how long? What season? Are there precipitating factors, such as certain foods? Specific features such as redness, sagging eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be referred to dedicated clinics. But a lot of first arrive to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, 78, has experienced cluster headaches for the majority of her adult life, although she hasn't had an attack since 2016. When she was in her 20s, she had her teeth extracted because dental professionals misinterpreted her pain. She believes dentists still need much more awareness. When another patient sought help from a support group, it was she who responded. The author recalls calling a support line during an bout in 2021; a reassuring advisor talked me through oxygen therapy and drugs until the episode passed.

Official guidance on management advise that sufferers are offered high-dose oxygen and/or a anti-migraine drug administered by injection. No oral painkillers or strong analgesics should be used. Preventive options include a blood pressure medication, which reportedly helps manage the attacks of well-known individuals.

But leading neurologists believe the guidance need updating to reflect a clearer clinical process and help GPs avoid misprescribing. For episodic patients, the treatment window is everything: “The length of the bout dictates the treatment.” Short cycles with occasional episodes are handled with acute therapy only. More prolonged or more intense bouts require preventative medications such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the head where the pain is that reduces nerve activity.

The national guidance need updating to reflect a