Full-Blown Pain: My Struggle Against the Puzzling Suffering of Cluster Headache Syndrome

It was a dreary weekday in the morning in September 2016. I worked as a educator, attempting to manage a new class, when a intense sensation sprang behind my right eye. Then came rapid shocks, similar to lightning bolts. As the school day progressed, the pain eased and then came back with increased force. Multiple times that day I left a teaching assistant with activities and ran to the school bathroom to douse my face with cool water. I tried paracetamol, but the pain remained unrelenting.

The attacks returned frequently that fall, and again in spring, soon forming an annual cycle. September and October were the worst, then the late winter. I could anticipate the pattern: a warning sensation in the shower, early twinges on the commute, full-on pain in class by 9.30am. In 2019, a doctor finally referred me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition typically begin with intense discomfort behind one eye that persists for three hours.

About one in 1,000 people are affected by the condition, and males are more often affected. Attacks typically start with abrupt, excruciating agony around one eye that reaches its peak within a short time and lasts for up to three hours. Attacks come in clusters, daily or several times a day, and are associated with tearing eyes, sagging eyelids or face perspiration. I have an episodic type, which occurs in seasonal cycles; some patients have continuous cluster headaches, characterized by the absence of long pain-free periods.

What unites patients is the intensity. One study rated the sensation at 9.7 10, higher than bone fractures or other conditions. A separate discovered a significant percentage of cluster headache patients reported suicidal thoughts amid bouts; the number dropped to four percent when they were pain-free.

Val Hobbs, 74, a long-term patient from Pembrokeshire, finds this understandable. Her attacks started when she was two. “I would hurl myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through childhood. Alcohol in her teens, similar to several causes, made things more intense. After having alcohol at her graduation party, she remembers hardly being able to see on the bus home.

Her family often mistook her episodes as intoxicated behavior. Understanding finally came from her parent and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often concealed her illness. She was fired from one job, partly due to absences during episodes. Her definitive identification came in 2002 at a national hospital.

Still, the inability to plan life around unpredictable attacks took its effect. She especially hated being unable to plan outings, being seen as unreliable as a co-worker, 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 obtaining tickets for a significant concert, only to have an attack inside a facility.

Headaches have been described throughout history. “The first account of headache comes by way of the ancient civilizations in 4000BC,” write authors in a book on the topic. They linked the ailment to an malevolent spirit who attacked his victims' heads.

Ancient healing records suggest bizarre treatments for what some experts would describe as a headache disorder. In the middle ages, severe headache was recognised as a separate condition, with treatments including bloodletting to other, more superstitious remedies.

It was a Dutch doctor who provided the first detailed description of a cluster headache. In his writings, he describes a patient “suffering with a very severe headache occurring and disappearing daily at fixed hours”.

Cluster headaches were only officially recognised by international medical societies in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a major blood vessel that delivers blood to the brain. Leading specialists in treating the disorder explain this.

In 1998, scientists published the findings of a study for which they had induced attacks in patients and observed the episodes in a imaging machine. 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 felt better.

Despite such progress, diagnosis remains slow. Jamie Charteris's attacks began in the 1980s and felt like “a balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he had multiple operations before finally being diagnosed in recently, after a doctor looked up his complaints.

Specialists say delays in diagnosis and treatment occur because patients are seldom seen during an episode. “You're tired and depressed, but not in severe pain,” one says. He proceeds by ruling out other common head pain disorders, such as migraine, before confirming cluster headaches. A detailed patient history is crucial: on which part of the head do signs appear? For how long? What season? Are there triggers, such as certain foods? Specific features such as redness, sagging eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be sent to specialist centers. But many first go to A&E or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has experienced 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 molars pulled because dental professionals misinterpreted her pain. She thinks dentists still need much more awareness. When another patient sought help from a charity, it was she who replied. The author recalls calling a helpline during an bout in 2021; a reassuring volunteer talked them through oxygen therapy and drugs until the attack eased.

National guidance on treatment recommend that patients are offered high-flow oxygen therapy and/or a specific medication delivered by injection. No tablets or strong analgesics should be used. Preventive options include verapamil, which apparently soothes the attacks of well-known individuals.

But leading neurologists believe the guidance need updating to reflect a clearer treatment process and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The duration of the bout determines the treatment.” Brief bouts with infrequent attacks are handled with abortive treatment alone. More prolonged or more severe periods require preventives such as verapamil, sometimes paired with steroids. Many patients also receive a nerve block injection during a bout – an procedure into the side of the head where the discomfort is that reduces nerve signals.

The official guidance need revising to reflect a