Full-Blown Agony: My Fight Against the Enigmatic Pain of Cluster Headache Syndrome

It began on a overcast weekday in the morning in September 2016. I worked as a teacher, attempting to manage a new group of students, when a sudden pain bloomed behind my right eye. It was followed by quick stabs, similar to lightning bolts. As each class progressed, the discomfort subsided and then came back with increased intensity. Four times that day I left a teaching assistant with worksheets and hurried to the school bathroom to soak my face with cool water. I tried paracetamol, but the agony remained unrelenting.

The headaches appeared frequently that fall, and again in spring, soon forming an yearly cycle. September and October were the most severe, then the late winter. I could anticipate the pattern: aura in the morning, early twinges on the commute, full-on agony in the classroom by 9.30am. In 2019, a doctor finally referred me to a neurologist and I was given a diagnosis with cluster headaches.

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

Approximately 1 in 1000 people are affected by the condition, and males are more often diagnosed. Cluster headaches typically begin with sudden, excruciating agony focused on one eye that peaks within minutes and lasts for as long as three hours. Attacks come in clusters, daily or multiple times a day, and are associated with tearing eyes, sagging eyelids or facial sweating. There exists the episodic form, which occurs in periodic bouts; others have chronic cluster headaches, characterized by the lack of long pain-free periods.

What connects sufferers is the intensity. One research paper scored the sensation at 9.7 10, higher than broken bones or other conditions. Another found 64% of cluster patients reported suicidal thoughts amid attacks; the figure dropped to 4% when they were not in pain.

One patient, in her seventies, a long-term patient from Wales, finds this understandable. Her attacks started when she was two. “I would throw myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her condition deteriorated through childhood. Alcohol in her adolescence, similar to several causes, made things worse. After having alcohol at her graduation party, she recalls barely being able to see on the bus home.

Her relatives often interpreted her episodes as intoxicated behavior. Support 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 illness. She was fired from one job, partly due to absences during episodes. Her definitive identification came in 2002 at a national neurology center.

Still, the failure to plan life around unpredictable attacks took its toll. She especially hated being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a facility.

Headaches have been documented throughout history. “The first description of headache comes by way of the ancient civilizations in antiquity,” write authors in a publication on the topic. They attributed the disease to an malevolent spirit who attacked his victims' heads.

Ancient medical records propose bizarre remedies for what some experts would classify as a migraine. In the medieval times, migraine was identified as a separate disorder, with therapies including herbal concoctions to other, more folk cures.

It was a European doctor who provided the first comprehensive description of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very intense headache occurring and disappearing daily at fixed hours”.

The disorder were only formally recognised by global headache societies in 1988. From the 1960s to the 1990s, they were thought to be caused by a issue with a key blood vessel which supplies blood to the brain. Leading experts in treating the condition note this.

In 1998, researchers released the results of a research project for which they had induced attacks in patients and monitored the attacks in a brain scanner. The results, featured in a major medical publication, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

Despite such advances, identification remains slow. Jamie Charteris's attacks started in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he had multiple operations before eventually being diagnosed in 2014, after a doctor looked up his complaints.

Specialists say delays in diagnosis and managing happen because patients are rarely seen mid-attack. “You're tired and depressed, but not in severe pain,” a doctor says. He proceeds by ruling out other primary headache disorders, such as tension-type headache, before confirming cluster headaches. A thorough patient history is essential: on which part of the head do symptoms appear? For how long? What time of year? Are there triggers, such as alcohol? Specific features such as redness, drooping eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be referred to specialist centers. But many first go to emergency rooms or are given unsuitable therapies.

A charity trustee, 78, has experienced the condition for the majority of her life, although she hasn't had an attack since recent years. When she was in her 20s, she had her teeth extracted because dentists misinterpreted her symptoms. She thinks dentists still need greater education. When a sufferer 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 talked them through oxygen therapy and medication until the attack eased.

Official guidance on treatment recommend that sufferers are offered high-flow oxygen therapy and/or a anti-migraine drug delivered by injection. No tablets or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which apparently helps manage the attacks of well-known individuals.

But leading specialists believe the guidance need revising to reflect a more defined treatment process and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The length of the cycle determines the approach.” Brief cycles with infrequent episodes are handled with acute therapy only. Longer or more severe bouts require preventives such as verapamil, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the side of the skull where the discomfort is that decreases nerve signals.

The national guidance need revising to reflect a