Full-Blown Suffering: A Personal Struggle With the Mysterious Suffering of Cluster Headache Syndrome

It was a gloomy Monday in the morning in the autumn of 2016. I worked as a educator, trying to settle a new group of students, when a sharp sensation erupted behind my one eye. Then came quick stabs, reminiscent of lightning bolts. As each class progressed, the pain subsided and then returned with increased force. Multiple times that day I left a teaching assistant with activities and hurried to the staff bathroom to douse my face with cool water. I took paracetamol, but the pain remained unbearable.

The headaches returned repeatedly that autumn, and once more in spring, soon establishing an annual pattern. September and October were the worst, then February and March. I could anticipate the routine: aura in the morning, early twinges on the commute, full-on agony in the classroom by mid-morning. In late 2019, a doctor finally referred me to a neurologist and I was diagnosed with cluster headache disorder.

Cluster headaches often begin with severe discomfort behind a single eye that persists up to several hours.

Approximately 1 in 1000 people suffer by the condition, and men are more often affected. Attacks typically start with abrupt, excruciating pain focused on one eye that reaches its peak within minutes and continues for as long as three hours. Attacks occur in cycles, every day or multiple times a day, and are associated with red or watery eyes, drooping eyelids or facial perspiration. I have an episodic type, which occurs in periodic cycles; some patients have chronic cluster headaches, defined by the absence of extended pain-free periods.

What connects patients is the severity. One research paper scored the pain at 9.7 out of 10, more severe than bone fractures or other conditions. A separate discovered a significant percentage of cluster headache patients reported thoughts of self-harm during bouts; the figure dropped to 4% when they were pain-free.

Val Hobbs, 74, a long-term patient from Pembrokeshire, isn't surprised. Her attacks started when she was two. “I would throw myself on the ground and bang my head. That was put down to being spoiled,” she says. Her condition deteriorated through childhood. Drinking in her adolescence, similar to several causes, made things worse. After drinking sherry at her graduation party, she remembers barely being able to see on the transport home.

Her family often interpreted her episodes as intoxicated episodes. Support eventually came from her parent and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often concealed her illness. She was fired from one job, in part due to time off during episodes. Her definitive identification came in the early 2000s at a national neurology center.

Nevertheless, the failure to plan life around unpredictable attacks took its toll. She particularly hated being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her children during the paralysis caused by the most severe episodes. “It steals from you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a portable toilet.

Headaches have been described throughout history. “The earliest description of headache originates from the ancient civilizations in 4000BC,” write authors in a publication on the topic. They attributed the ailment to an malevolent spirit who attacked his sufferers' heads.

Ancient medical records suggest bizarre treatments for what some observers would describe as a migraine. In the medieval times, severe headache was recognised as a separate disorder, with therapies including herbal concoctions to other, more folk remedies.

It was a Dutch doctor who provided the initial detailed description of a cluster-type attack. In his writings, he describes a patient “suffering with a very severe headache happening and vanishing daily at fixed hours”.

Cluster headaches were only officially recognised by international headache committees in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a key blood vessel that delivers blood to the brain. Leading specialists in diagnosing the disorder explain this.

In 1998, researchers released the results of a study for which they had induced cluster headaches in patients and observed the attacks in a imaging machine. The results, published in a major journal, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

In spite of such progress, diagnosis remains slow. One man's attacks began in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he underwent multiple surgeries before eventually being correctly identified in recently, after a physician looked up his symptoms.

Neurologists say delays in diagnosing and treatment occur because patients are seldom seen during an episode. “You're tired and depressed, but not in agony,” a doctor says. He proceeds by eliminating other common head pain disorders, such as tension-type headache, before diagnosing cluster headaches. A thorough history is essential: on which part of the head do signs appear? For how long? What time of year? Are there precipitating factors, such as alcohol? Certain characteristics such as tearing, drooping eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be referred to specialist clinics. But a lot of first go to emergency rooms or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for the majority of her adult life, although she has been free from an episode since recent years. When she was in her twenties, she had her molars extracted because dentists misunderstood her symptoms. She thinks the dental profession still need greater education. When a sufferer sought help from a support group, it was Chapman who responded. The author recalls calling a support line during an bout in 2021; a calm advisor talked them through oxygen therapy and medication until the attack passed.

National guidance on management recommend that sufferers are offered high-flow oxygen therapy and/or a specific medication delivered by injection. No tablets or strong analgesics should be used. Prophylactic options include a blood pressure medication, which apparently helps manage the attacks of well-known people.

But leading specialists argue the official guidelines need updating to reflect a clearer clinical process and help general practitioners avoid misprescribing. For periodic patients, the treatment window is everything: “The duration of the cycle determines the approach.” Brief bouts with occasional episodes are handled with acute treatment only. Longer or more intense periods require preventative medications such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the area of the head where the pain is that reduces nerve activity.

The national guidelines need revising to reflect a