Excruciating Pain: A Personal Struggle With the Enigmatic Suffering of Cluster Headaches

It was a gloomy Monday in the morning in the autumn of 2016. I was working as a educator, attempting to manage a new group of students, when a sharp sensation bloomed behind my right eye. This was followed by rapid jolts, reminiscent of electric shocks. As the school day came and went, the pain eased and then came back with greater intensity. Multiple times that day I left a teaching assistant with activities and hurried to the staff bathroom to douse my face with cold water. I took aspirin, but the agony remained unrelenting.

The headaches appeared frequently that fall, and again in spring, soon establishing an yearly cycle. September and October were the most severe, then February and March. I could predict the pattern: aura in the shower, early pangs on the train, full-on agony in class by mid-morning. In late 2019, a GP eventually referred me to a neurologist and I was diagnosed with cluster headache disorder.

Cluster headaches often start with intense discomfort behind a single eye that persists up to three hours.

Approximately one in 1,000 individuals are affected by the condition, and men are more frequently affected. Attacks typically begin with abrupt, severe agony around a single eye that reaches its peak within a short time and lasts for as long as three hours. Attacks occur in cycles, daily or several times a day, and are associated with red or watery eyes, drooping eyelids or face sweating. I have an episodic type, which arrives in periodic cycles; some patients 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 out of 10, higher than bone fractures or pancreatitis. A separate found 64% of cluster patients reported thoughts of self-harm amid attacks; the figure fell to 4% when they were not in pain.

Val Hobbs, 74, a chronic patient from Wales, isn't surprised. Her episodes began when she was two. “I would hurl myself on the ground and hit my head. That was put down to being spoiled,” she says. Her condition worsened through childhood. Alcohol in her adolescence, similar to several triggers, made things worse. After drinking sherry at her school leaving party, she remembers hardly being able to see on the transport home.

Her relatives often mistook her attacks as drunken behavior. Understanding eventually came from her parent and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often concealed her illness. She was dismissed from one job, in part due to absences during episodes. Her breakthrough diagnosis came in the early 2000s at a specialist neurology center.

Still, the inability to organize life around unpredictable attacks took its effect. She particularly disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It steals from you of the simple freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a portable toilet.

Headaches have been documented across the ages. “The first account of headache comes by way of the Mesopotamians in 4000BC,” write authors in a book on the subject. They attributed the ailment to an evil entity who afflicted his victims' heads.

Ancient healing records propose unusual treatments for what some observers would describe as a headache disorder. In the medieval times, severe headache was identified as a separate condition, with therapies ranging from herbal concoctions to other, more folk cures.

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

Cluster headaches were only officially recognised by international medical committees in 1988. From the 1960s to the late 1990s, they were thought to be caused by a issue with a major blood vessel which supplies blood to the head. Leading experts in diagnosing the condition note this.

In the late 1990s, scientists published the findings of a study for which they had triggered attacks in patients and monitored the attacks in a brain scanner. The results, featured in a prominent medical publication, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

Despite such progress, diagnosis remains delayed. One man's attacks started in 1986 and felt like “a balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he underwent four operations before finally being diagnosed in recently, after a physician looked up his symptoms.

Specialists say wait times in diagnosis and managing occur because patients are seldom seen mid-attack. “You're tired and low, but not in severe pain,” a doctor says. He proceeds by eliminating other common headache conditions, such as tension-type headache, before diagnosing cluster headaches. A detailed patient history is essential: on which part of the head do symptoms occur? For how long? What time of year? Are there triggers, such as certain foods? Certain features such as redness, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent to specialist clinics. But many first go to emergency rooms or are given inadequate treatments.

A charity trustee, in her late seventies, has suffered from cluster headaches for the majority of her life, although she has been free from an episode since 2016. When she was in her 20s, she had her molars pulled because dental professionals misunderstood her symptoms. She thinks dentists still need much more awareness. When a sufferer sought help from a support group, it was she who replied. I remember calling a support line during an attack in 2021; a reassuring advisor talked me through oxygen treatment and medication until the episode eased.

National guidance on management advise that sufferers are offered high-dose oxygen therapy and/or a anti-migraine medication delivered by injection. No tablets or opioids should be used. Preventive choices include a blood pressure medication, which reportedly helps manage the attacks of some people.

But leading specialists believe the guidance need revising to reflect a clearer clinical pathway and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The length of the bout dictates the approach.” Short bouts with infrequent episodes are managed with acute treatment alone. More prolonged or more intense bouts require preventative medications such as certain drugs, sometimes combined with steroids. Many patients also receive a nerve block injection during a cycle – an injection into the side of the head where the discomfort is that decreases nerve signals.

The official guidelines need updating to reflect a