Excruciating Suffering: My Fight Against the Puzzling Suffering of Cluster Headaches

It began on a gloomy Monday in the morning in the autumn of 2016. I was working as a educator, trying to settle a new group of students, when a intense sensation erupted behind my one eye. It was followed by quick shocks, like lightning bolts. As each class progressed, the discomfort eased and then came back with increased force. Four times that day I handed over a teaching assistant with activities and ran to the school bathroom to soak my face with cool water. I took paracetamol, but the pain remained unrelenting.

The headaches returned frequently that fall, and again in spring, soon forming an yearly pattern. September and October were the most severe, then the late winter. I could predict the routine: aura in the shower, early pangs on the commute, full-on pain in class by mid-morning. In 2019, a GP eventually referred me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches often start with intense pain behind one eye that persists for three hours.

About 1 in 1000 people are affected by the condition, and males are more frequently diagnosed. Attacks usually start with sudden, severe agony around a single eye that reaches its peak within minutes and continues for as long as three hours. Episodes come in clusters, every day or multiple times a day, and are associated with tearing eyes, sagging eyelids or facial sweating. There exists the episodic form, which occurs in seasonal bouts; some patients have continuous cluster headaches, characterized by the lack of long pain-free periods.

What connects sufferers is the intensity. One study scored the pain at 9.7 10, more severe than broken bones or other conditions. A separate discovered 64% of cluster patients experienced suicidal thoughts during bouts; the figure fell to 4% when they were pain-free.

Val Hobbs, 74, a long-term patient from Pembrokeshire, finds this understandable. Her attacks began when she was a toddler. “I would hurl myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her condition worsened through childhood. Alcohol in her teens, similar to many triggers, made things more intense. After having alcohol at her graduation party, she remembers barely being able to see on the transport home.

Her relatives often interpreted her episodes as intoxicated episodes. Understanding 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 hid her condition. She was fired from one job, partly due to time off during episodes. Her definitive identification came in the early 2000s at a specialist hospital.

Still, the failure to organize life around unpredictable attacks took its toll. She particularly disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be cared for by her children during the paralysis 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 winning tickets for a major concert, only to have an attack inside a portable toilet.

Headaches have been described throughout the ages. “The first description of headache originates from the Mesopotamians in antiquity,” write experts in a publication on the topic. They attributed the ailment to an malevolent spirit who attacked his sufferers' heads.

Historical medical records propose bizarre treatments for what some experts would classify as a migraine. In the medieval times, severe headache was recognised as a distinct condition, with treatments ranging from herbal concoctions to other, more folk remedies.

It was a European doctor who provided the initial comprehensive account of a cluster headache. In his medical observations, he describes a patient “afflicted with a very intense headache happening and vanishing each day at specific hours”.

Cluster headaches were only officially classified by global headache societies in 1988. From the 1960s to the late 1990s, they were believed to be caused by a issue with a key blood vessel which delivers blood to the head. Prominent experts in treating the disorder note this.

In 1998, scientists published the findings of a study for which they had induced attacks in patients and observed the attacks in a brain scanner. The results, published in a prominent journal, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

Despite such progress, diagnosis remains delayed. One man's symptoms started in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had sinus problems; he underwent four operations before finally being diagnosed in recently, after a physician looked up his symptoms.

Specialists say delays in diagnosis and treatment occur because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in severe pain,” one says. He proceeds by eliminating other primary headache conditions, such as migraine, before confirming cluster headaches. A detailed history is essential: on which side do symptoms appear? For how long? What season? Are there precipitating factors, such as certain foods? Specific characteristics such as tearing, drooping eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be sent to dedicated clinics. But many first arrive to emergency rooms or are given inadequate treatments.

Dorothy Chapman, 78, has suffered from cluster headaches for most of her life, although she has been free from an attack since 2016. When she was in her 20s, she had her molars pulled because dental professionals misinterpreted her pain. She thinks the dental profession still need much more awareness. When another patient sought help from a support group, it was she who responded. I remember calling a helpline during an bout in early 2021; a reassuring advisor talked them through oxygen treatment and drugs until the attack passed.

Official guidelines on management recommend that patients are offered high-flow oxygen therapy and/or a specific drug administered by nasal spray. No tablets or strong analgesics should be used. Preventive options include verapamil, which reportedly soothes the bouts of some individuals.

But leading neurologists believe the guidance need updating to reflect a more defined treatment pathway and help GPs avoid misprescribing. For episodic patients, the treatment window is critical: “The duration of the cycle determines the approach.” Brief bouts with occasional attacks are handled with abortive therapy only. Longer or more severe bouts require preventative medications such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the side of the skull where the discomfort is that reduces nerve activity.

The official guidance need revising to reflect a