Excruciating Pain: My Fight Against the Enigmatic Pain of Cluster Headaches

It began on a dreary weekday morning in the autumn of 2016. I was working as a teacher, trying to settle a new class, when a intense sensation bloomed behind my right eye. It was followed by rapid shocks, like electric shocks. As each class progressed, the discomfort subsided and then came back with increased force. Multiple times that day I left a colleague with worksheets and ran to the staff bathroom to soak my face with cold water. I tried ibuprofen, but the agony remained unrelenting.

The attacks appeared frequently that fall, and once more in the spring, soon forming an annual pattern. The autumn months were the most severe, then the late winter. I could anticipate the routine: aura in the morning, early pangs on the train, full-blown pain in the classroom by 9.30am. In late 2019, a GP finally referred me to a specialist and I was diagnosed with cluster headaches.

This condition typically start with intense discomfort behind a single eye that persists up to several hours.

About 1 in 1000 individuals suffer by the disorder, and men are more frequently diagnosed. Cluster headaches typically begin with sudden, excruciating pain focused on a single eye that peaks within minutes and lasts for as long as three hours. Attacks occur in cycles, daily or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or face perspiration. I have the episodic form, which arrives in seasonal cycles; others have continuous cluster headaches, characterized by the lack of extended pain-free periods.

What unites patients is the intensity. One study scored the sensation at 9.7 out of 10, higher than broken bones or other conditions. A separate discovered 64% of cluster headache patients experienced thoughts of self-harm amid attacks; the figure dropped to 4% when they were pain-free.

Val Hobbs, 74, a long-term patient from Wales, isn't surprised. Her attacks began when she was a toddler. “I would hurl myself on the floor and bang my head. That was put down to being spoiled,” she says. Her condition worsened through childhood. Alcohol in her adolescence, similar to several causes, made things worse. After having sherry at her school leaving 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 partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after moving, but often concealed her condition. She was dismissed from one job, in part due to time off during episodes. Her definitive identification came in the early 2000s at a national hospital.

Still, the failure to organize life around erratic attacks took its toll. She especially hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a portable toilet.

Headaches have been described throughout history. “The first description of headache comes by way of the Mesopotamians in 4000BC,” write experts in a book on the topic. They linked the disease to an evil spirit who afflicted his sufferers' heads.

Historical medical texts propose bizarre remedies for what modern observers would describe as a migraine. In the middle ages, migraine was recognised as a distinct condition, with therapies including herbal concoctions to other, more folk remedies.

It was a Dutch physician who provided the first detailed description of a cluster headache. In his writings, he speaks of a patient “afflicted with a very intense headache occurring and disappearing each day at fixed hours”.

The disorder were only formally recognised by global medical societies in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a major blood vessel which delivers blood to the brain. Leading experts in diagnosing the disorder explain this.

In 1998, researchers released the results of a research project for which they had induced cluster headaches in patients and monitored the episodes 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 sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

In spite of such progress, diagnosis remains delayed. Jamie Charteris's attacks began in the 1980s and felt like “a balloon being inflated behind my one eye”. GPs thought he had sinus problems; he underwent multiple surgeries before eventually being diagnosed in 2014, after a physician researched his symptoms.

Specialists say wait times in diagnosis and managing happen because patients are seldom seen during an episode. “You're tired and depressed, but not in agony,” one says. He works by eliminating other common headache conditions, such as migraine, before diagnosing the disorder. A detailed patient history is essential: on which side do symptoms appear? For how long? What season? Are there triggers, such as certain foods? Specific features such as redness, drooping eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be referred to dedicated centers. But many first arrive to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, 78, has experienced the condition for the majority of her life, although she hasn't had an episode since 2016. When she was in her 20s, she had her molars extracted because dentists misinterpreted her pain. She believes dentists still need much more awareness. When a sufferer sought help from a support group, it was Chapman who responded. The author recalls calling a helpline during an bout in early 2021; a calm volunteer talked them through oxygen therapy and medication until the attack eased.

Official guidance on treatment advise that sufferers are offered high-flow oxygen and/or a specific medication administered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive options include a blood pressure medication, which apparently helps manage the attacks of well-known people.

But consultant neurologists argue the guidance need updating to reflect a clearer clinical pathway and help GPs avoid misprescribing. For periodic patients, timing is everything: “The length of the bout determines the treatment.” Short bouts with occasional attacks are managed with abortive treatment only. Longer 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 decreases nerve activity.

The official guidance need revising to reflect a