Full-Blown Pain: My Fight Against the Mysterious Suffering of Cluster Headache Syndrome

It began on a dreary weekday in the morning in September 2016. I worked as a educator, trying to settle a new class, when a intense sensation erupted behind my one eye. It was followed by rapid shocks, similar to lightning bolts. As the school day progressed, the discomfort eased and then came back with greater force. Four times that day I handed over a colleague with activities and hurried to the staff bathroom to douse my face with cool water. I took ibuprofen, but the agony remained unrelenting.

The attacks appeared frequently that autumn, and again in the spring, soon establishing an yearly cycle. The autumn months were the worst, then the late winter. I could predict the pattern: aura in the shower, early pangs on the train, full-on pain in class by 9.30am. In late 2019, a doctor eventually referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often start with severe pain around one eye that persists up to several hours.

About 1 in 1000 individuals are affected by the disorder, and males are more often diagnosed. Cluster headaches typically begin with abrupt, severe pain around one eye that reaches its peak within a short time and lasts for up to three hours. Episodes occur in cycles, every day or several times a day, and are associated with red or watery eyes, sagging eyelids or face sweating. There exists the episodic form, which arrives in seasonal bouts; some patients have continuous cluster headaches, defined by the lack of long symptom-free periods.

What connects sufferers is the intensity. One study scored the sensation at 9.7 out of 10, higher than broken bones or other conditions. A separate found a significant percentage of cluster headache patients reported suicidal thoughts during attacks; the number dropped to four percent when they were pain-free.

Val Hobbs, 74, a chronic patient from Wales, isn't surprised. Her episodes began when she was a toddler. “I would throw myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through her youth. Drinking in her teens, similar to many causes, made things more intense. After drinking alcohol at her graduation party, she recalls hardly being able to see on the transport home.

Her family often mistook her attacks as drunken behavior. Support finally came from her father and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often concealed her condition. She was dismissed from one job, partly due to time off during episodes. Her breakthrough identification came in 2002 at a national neurology center.

Still, the inability to plan life around unpredictable pain took its effect. She particularly hated being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her children during the paralysis caused by the most severe episodes. “It steals from you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant 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 experts in a publication on the subject. They attributed the ailment to an malevolent entity who attacked his victims' heads.

Ancient healing texts propose unusual treatments for what modern observers would classify as a migraine. In the medieval times, severe headache was identified as a separate condition, with therapies including herbal concoctions to other, more superstitious remedies.

It was a Dutch physician who provided the initial detailed description of a cluster-type attack. In his writings, he describes a patient “suffering with a very severe headache occurring and vanishing daily at fixed hours”.

Cluster headaches were only officially classified by international medical committees in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a key blood vessel that delivers blood to the head. Prominent specialists in treating the condition note this.

In 1998, scientists published the results of a research project for which they had induced attacks in patients and monitored the attacks in a imaging machine. The results, featured in a major journal, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

In spite of such advances, diagnosis remains slow. Jamie Charteris's attacks began in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had sinus problems; he underwent four operations before eventually being correctly identified in recently, after a doctor looked up his complaints.

Neurologists say delays in diagnosing and treatment occur because patients are rarely seen during an episode. “You're exhausted and depressed, but not in severe pain,” a doctor says. He proceeds by eliminating other common headache conditions, such as migraine, before confirming cluster headaches. A detailed patient history is crucial: on which part of the head do signs occur? For how long? What season? Are there precipitating factors, such as certain foods? Certain characteristics such as tearing, sagging eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be sent to dedicated clinics. But many first go to A&E or are given unsuitable therapies.

Dorothy Chapman, 78, has experienced cluster headaches for most of her life, although she has been free from an episode since recent years. When she was in her twenties, she had her teeth extracted because dental professionals misunderstood her pain. She thinks the dental profession still need greater awareness. When another patient sought help from a support group, it was she who responded. The author recalls calling a helpline during an bout in 2021; a calm volunteer guided me through oxygen therapy and drugs until the episode passed.

National guidelines on management advise that patients are offered high-dose oxygen therapy and/or a anti-migraine medication delivered by nasal spray. No oral painkillers or opioids should be used. Prophylactic options include a blood pressure medication, which reportedly soothes the attacks of well-known people.

But consultant specialists argue the guidance need updating to reflect a clearer treatment process and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The length of the bout determines the treatment.” Brief bouts with infrequent episodes are handled with acute therapy alone. More prolonged or more severe periods require preventives such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the area of the skull where the pain is that reduces nerve signals.

The official guidance need updating to reflect a