Excruciating Pain: A Personal Fight Against the Enigmatic Suffering of Cluster Headaches

It was a dreary Monday in the morning in September 2016. I was working as a educator, trying to settle a new class, when a sudden pain sprang behind my one eye. This was followed by quick shocks, like electric shocks. As the school day progressed, the discomfort subsided and then returned with greater intensity. Multiple times that day I left a teaching assistant with worksheets and ran to the staff bathroom to douse my face with cool water. I tried aspirin, but the agony remained unbearable.

The attacks returned frequently that fall, and once more in the spring, soon forming an yearly cycle. 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-on pain in class by 9.30am. In late 2019, a GP finally sent me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches often begin with severe pain around a single eye that lasts up to three hours.

Approximately 1 in 1000 individuals are affected by the disorder, and men are more often diagnosed. Cluster headaches usually start with sudden, excruciating agony focused on one eye that reaches its peak within minutes and continues for up to three hours. Attacks come in clusters, daily or several times a day, and are associated with tearing eyes, sagging eyelids or facial sweating. There exists the episodic form, which arrives in seasonal bouts; others have continuous cluster headaches, defined by the absence of extended symptom-free periods.

What unites patients is the severity. One study rated the sensation at 9.7 out of 10, more severe than bone fractures or other conditions. Another discovered a significant percentage of cluster patients experienced thoughts of self-harm during attacks; the figure dropped to 4% when they were pain-free.

One patient, 74, a long-term patient from Wales, finds this understandable. Her episodes began when she was two. “I would hurl myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her condition worsened through her youth. Alcohol in her adolescence, similar to many causes, made things worse. After having alcohol at her graduation party, she remembers barely being able to see on the bus home.

Her relatives often interpreted her episodes as intoxicated episodes. Support eventually came from her parent and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often hid her illness. She was dismissed from one job, partly due to time off during attacks. Her breakthrough identification came in the early 2000s at a national hospital.

Still, the inability to organize daily activities around unpredictable attacks took its toll. 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 incapacitation caused by the most severe episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a facility.

Headaches have been described throughout history. “The earliest description of headache comes by way of the Mesopotamians in antiquity,” write experts in a book on the subject. They attributed the disease to an evil entity who attacked his victims' heads.

Historical healing records suggest bizarre treatments for what modern observers would describe as a migraine. In the middle ages, migraine was identified as a separate disorder, with treatments ranging from herbal concoctions to other, more folk remedies.

It was a Dutch physician who provided the initial comprehensive description of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very intense headache occurring and disappearing each day at fixed hours”.

The disorder were only officially classified by international headache societies in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a issue with a major artery that delivers blood to the head. Prominent experts in diagnosing the disorder note this.

In the late 1990s, researchers released the results of a study for which they had triggered cluster headaches in patients and monitored the attacks in a imaging machine. The results, featured in a major medical publication, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

In spite of such progress, identification remains slow. One man's symptoms began in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he had multiple operations before eventually being correctly identified in recently, after a doctor looked up his complaints.

Specialists say delays in diagnosis and treatment happen because patients are seldom seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He works by eliminating other common headache disorders, such as tension-type headache, before diagnosing cluster headaches. A thorough history is essential: on which part of the head do symptoms appear? For how long? What time of year? Are there precipitating factors, such as certain foods? Certain characteristics such as tearing, drooping eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be referred to dedicated clinics. But a lot of first go to A&E or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has suffered from the condition for most of her adult life, although she has been free from an attack since recent years. When she was in her twenties, she had her molars extracted because dental professionals misinterpreted her symptoms. She believes the dental profession still need greater awareness. When a sufferer sought help from a support group, it was she who responded. The author recalls calling a helpline during an attack in early 2021; a calm advisor guided them through oxygen treatment and drugs until the episode eased.

National guidelines on treatment advise that sufferers are offered high-dose oxygen therapy and/or a specific medication administered by nasal spray. No tablets or strong analgesics should be used. Preventive choices include a blood pressure medication, which apparently soothes the bouts of well-known people.

But consultant specialists argue the official guidelines need revising to reflect a more defined clinical pathway and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the cycle dictates the treatment.” Short bouts with occasional attacks are managed with abortive treatment only. Longer or more severe bouts require preventative medications such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the area of the head where the discomfort is that reduces nerve activity.

The national guidance need revising to reflect a