Unbearable Suffering: My Fight With the Mysterious Suffering of Cluster Headache Syndrome

It was a gloomy Monday in the morning in September 2016. I was working as a teacher, trying to settle a new class, when a sudden sensation sprang behind my right eye. This was followed by rapid jolts, like lightning bolts. As the school day came and went, the discomfort subsided and then came back with greater force. Four times that day I left a teaching assistant with worksheets and hurried to the school bathroom to douse my face with cold water. I took aspirin, but the agony remained unbearable.

The attacks returned frequently that fall, and again in spring, soon establishing an yearly pattern. The autumn months were the most severe, then February and March. I could anticipate the routine: a warning sensation in the shower, early twinges on the train, full-on pain in class by mid-morning. In 2019, a doctor finally sent me to a neurologist and I was diagnosed with cluster headache disorder.

This condition often start with severe discomfort behind a single eye that persists for three hours.

Approximately 1 in 1000 people are affected by the condition, and males are more frequently diagnosed. Attacks usually start with sudden, excruciating agony focused on a single eye that peaks within minutes and lasts for up to three hours. Episodes come in clusters, daily or several times a day, and are accompanied by tearing eyes, drooping eyelids or face sweating. There exists an episodic type, which occurs in periodic cycles; others have chronic attacks, defined by the absence of long pain-free periods.

What unites patients is the severity. One research paper rated the sensation at 9.7 10, more severe than bone fractures or other conditions. A separate discovered 64% of cluster patients experienced thoughts of self-harm during bouts; the figure dropped to 4% when they were pain-free.

Val Hobbs, in her seventies, a chronic patient from Wales, finds this understandable. Her attacks began when she was two. “I would hurl myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her condition worsened through her youth. Alcohol in her adolescence, like several causes, made things more intense. After having alcohol at her graduation party, she recalls hardly being able to see on the transport home.

Her family often interpreted her episodes as intoxicated episodes. Understanding eventually came from her parent and then from her partner, Rod. “I was very lucky 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, in part due to time off during attacks. Her definitive identification came in the early 2000s at a specialist hospital.

Still, the failure to organize daily activities around erratic attacks took its effect. She especially disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an episode inside a portable toilet.

Headaches have been described across the ages. “The earliest description of headache comes by way of the ancient civilizations in 4000BC,” write experts in a book on the topic. They linked the ailment to an malevolent entity who attacked his sufferers' heads.

Historical medical texts propose bizarre remedies for what some observers would describe as a headache disorder. In the medieval times, severe headache was recognised as a distinct condition, with therapies ranging from herbal concoctions to other, more folk remedies.

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

Cluster headaches were only officially recognised by global medical societies in 1988. From the 1960s to the late 1990s, they were thought to be caused by a problem with a major artery that delivers blood to the brain. Leading specialists in treating the disorder note this.

In the late 1990s, researchers released the findings of a research project for which they had induced attacks in patients and monitored the episodes in a brain scanner. The data, published in a major medical publication, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

In spite of such progress, identification remains slow. One man's attacks started in 1986 and felt like “a balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he had four operations before finally being diagnosed in recently, after a physician looked up his complaints.

Specialists say delays in diagnosing and treatment happen because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in agony,” one says. He proceeds by eliminating other primary head pain disorders, such as tension-type headache, before diagnosing cluster headaches. A detailed patient history is crucial: on which side do signs appear? For how long? What season? Are there precipitating factors, such as alcohol? Certain features such as redness, sagging eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be sent to dedicated centers. But a lot of first go to A&E or are given unsuitable treatments.

A charity trustee, in her late seventies, has experienced the condition for the majority of her adult life, although she hasn't had an episode since 2016. When she was in her twenties, she had her teeth extracted because dental professionals misinterpreted her symptoms. She believes the dental profession still need much more awareness. When a sufferer sought help from a charity, it was Chapman who replied. I remember calling a helpline during an attack in 2021; a calm advisor talked them through oxygen treatment and drugs until the episode eased.

National guidance on management advise that patients are offered high-flow oxygen therapy and/or a specific drug delivered by injection. No tablets or opioids should be used. Prophylactic options include verapamil, which reportedly helps manage the bouts of some individuals.

But consultant neurologists argue the guidance need revising to reflect a clearer treatment pathway and help general practitioners avoid misprescribing. For periodic patients, the treatment window is critical: “The duration of the cycle dictates the approach.” Brief bouts with infrequent episodes are managed with abortive treatment only. Longer or more severe periods require preventative medications such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the skull where the discomfort is that decreases nerve signals.

The national guidelines need revising to reflect a