Unbearable Suffering: A Personal Struggle With the Mysterious Pain of Cluster Headaches

It was a overcast Monday morning in the autumn of 2016. I worked as a educator, attempting to manage a new group of students, when a intense sensation erupted behind my right eye. It was followed by quick shocks, reminiscent of lightning bolts. As the school day came and went, the pain eased and then returned with increased force. Four times that day I handed over a teaching assistant with worksheets and hurried to the staff bathroom to soak my face with cool water. I took ibuprofen, but the agony remained unrelenting.

The headaches appeared frequently that autumn, and again in spring, soon establishing an yearly pattern. September and October were the worst, then February and March. I could anticipate the routine: a warning sensation in the shower, early pangs on the commute, full-on agony in the classroom by mid-morning. In late 2019, a GP finally sent me to a specialist and I was given a diagnosis with cluster headaches.

This condition often begin with intense discomfort around one eye that lasts for several hours.

About one in 1,000 people are affected by the disorder, and men are more frequently affected. Cluster headaches usually begin with abrupt, severe pain focused on a single eye that reaches its peak within a short time and lasts for up to three hours. Episodes come in clusters, every day or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or facial perspiration. There exists an episodic type, which occurs in periodic cycles; some patients have continuous attacks, characterized by the lack of extended symptom-free periods.

What connects sufferers is the severity. One study rated the pain at 9.7 out of 10, more severe than broken bones or pancreatitis. Another discovered 64% of cluster headache patients reported thoughts of self-harm during attacks; the number fell to 4% when they were pain-free.

One patient, in her seventies, a long-term patient from Wales, finds this understandable. Her episodes began when she was a toddler. “I would hurl myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her symptoms worsened through her youth. Drinking in her adolescence, similar to many triggers, 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 attacks as intoxicated episodes. Understanding 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 office work after moving, but often concealed her condition. She was fired from one job, partly due to absences during attacks. Her definitive identification came in the early 2000s at a national hospital.

Nevertheless, the inability to organize life around erratic pain took its toll. She especially disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her children during the incapacitation caused by the worst episodes. “It steals from you of the small freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

Headaches have been described across the ages. “The earliest account of headache comes by way of the Mesopotamians in 4000BC,” write experts in a publication on the topic. They linked the disease to an evil entity who attacked his victims' heads.

Historical healing records suggest unusual remedies for what some experts would describe as a headache disorder. In the middle ages, severe headache was identified as a separate disorder, with therapies ranging from herbal concoctions to other, more folk remedies.

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

The disorder were only officially recognised by global headache committees in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a major blood vessel which delivers blood to the head. Prominent experts in diagnosing the disorder explain this.

In the late 1990s, researchers published the results of a research project for which they had triggered cluster headaches in patients and observed the attacks in a imaging machine. The results, published in a major medical publication, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

In spite of such progress, identification remains slow. Jamie Charteris's attacks started 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 2014, after a physician looked up his complaints.

Neurologists say delays in diagnosing and managing occur because patients are seldom seen during an episode. “You're tired and low, but not in severe pain,” one says. He works by ruling out other common headache conditions, such as tension-type headache, before diagnosing cluster headaches. A thorough patient history is essential: on which part of the head do symptoms appear? For how long? What season? Are there precipitating factors, such as alcohol? Specific characteristics such as tearing, sagging eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be referred to dedicated centers. But many first go to A&E or are given inadequate treatments.

A charity trustee, 78, has suffered from the condition for the majority of her adult life, although she has been free from an episode since 2016. When she was in her twenties, she had her molars extracted because dentists misunderstood her symptoms. She thinks dentists still need greater awareness. When a sufferer sought help from a support group, it was she who responded. I remember calling a support line during an attack in 2021; a calm advisor guided me through oxygen therapy and drugs until the attack eased.

Official guidance on treatment recommend that sufferers are offered high-dose oxygen therapy and/or a anti-migraine drug delivered by injection. No tablets or opioids should be used. Preventive choices include verapamil, which reportedly helps manage the attacks of some people.

But leading specialists argue the guidance need revising to reflect a clearer treatment process and help general practitioners avoid misprescribing. For periodic patients, the treatment window is critical: “The length of the cycle dictates the approach.” Brief cycles with infrequent attacks are managed with acute treatment only. Longer or more intense bouts require preventives such as verapamil, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the area of the skull where the pain is that reduces nerve signals.

The national guidelines need revising to reflect a