Full-Blown Suffering: My Fight Against the Mysterious Suffering of Cluster Headache Syndrome

It was a overcast weekday morning in the autumn of 2016. I worked as a teacher, attempting to manage a new class, when a sudden pain bloomed behind my right eye. It was followed by rapid jolts, reminiscent of electric shocks. As the school day came and went, the pain subsided and then returned with increased force. Multiple times that day I handed over a colleague with worksheets and hurried to the staff bathroom to soak my face with cold water. I took aspirin, but the pain remained unrelenting.

The attacks returned repeatedly that autumn, and again in spring, soon forming an annual pattern. September and October were the worst, then February and March. I could anticipate the pattern: a warning sensation in the morning, early pangs on the train, full-on pain in class by 9.30am. In late 2019, a GP eventually sent me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches often begin with intense pain around one eye that lasts up to three hours.

Approximately one in 1,000 individuals are affected by the condition, and males are more often affected. Cluster headaches usually start with abrupt, excruciating agony around one eye that reaches its peak within a short time and continues 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 face sweating. There exists an episodic type, which occurs in seasonal cycles; others have continuous attacks, defined by the absence of extended pain-free periods.

What connects patients is the intensity. One study rated the pain at 9.7 out of 10, higher than broken bones or pancreatitis. Another discovered a significant percentage of cluster patients reported thoughts of self-harm during attacks; the number fell to four percent when they were pain-free.

One patient, 74, a long-term sufferer from Wales, isn't surprised. Her episodes started when she was a toddler. “I would hurl myself on the floor and bang my head. That was put down to being spoiled,” she says. Her condition deteriorated through childhood. Alcohol in her adolescence, like many causes, made things worse. After having sherry at her school leaving party, she recalls barely being able to see on the bus home.

Her relatives often mistook her attacks as drunken behavior. Support finally came from her father and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after relocating, but often concealed her condition. She was dismissed from one job, partly due to time off during episodes. Her breakthrough diagnosis came in 2002 at a specialist hospital.

Still, the inability to organize daily activities around unpredictable pain took its effect. She especially hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a facility.

Headaches have been documented across history. “The first description of headache comes by way of the Mesopotamians in 4000BC,” write experts in a publication on the subject. They linked the disease to an evil entity who afflicted his victims' heads.

Historical healing records propose bizarre remedies for what some observers would classify as a headache disorder. In the middle ages, migraine was identified as a separate condition, with therapies including bloodletting to other, more folk remedies.

It was a European physician who provided the initial detailed account of a cluster headache. In his writings, he speaks of a patient “afflicted with a very severe headache happening and disappearing daily at fixed hours”.

The disorder were only officially recognised by global medical societies in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a key blood vessel which supplies blood to the brain. Prominent specialists in treating the condition note this.

In 1998, scientists released the findings of a research project for which they had triggered attacks in patients and observed the episodes in a imaging machine. The results, published in a prominent journal, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

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 one eye”. GPs thought he had sinus problems; he underwent multiple surgeries before finally being diagnosed in 2014, after a doctor researched his symptoms.

Specialists say delays in diagnosing and treatment occur because patients are seldom seen mid-attack. “You're exhausted and low, but not in agony,” one says. He works by ruling out other common head pain conditions, such as tension-type headache, before confirming cluster headaches. A thorough patient history is crucial: on which side do symptoms occur? For how much time? What season? Are there triggers, such as certain foods? Specific characteristics such as redness, drooping eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be sent to specialist centers. But many first go to A&E or are given inadequate treatments.

Dorothy Chapman, 78, has suffered from the condition for the majority of her life, although she hasn't had an episode since recent years. When she was in her twenties, she had her teeth pulled because dentists misinterpreted her pain. She believes dentists still need much more awareness. When another patient sought help from a support group, it was she who responded. I remember calling a support line during an bout in early 2021; a reassuring advisor talked me through oxygen treatment and drugs until the episode eased.

National guidance on management recommend that sufferers are offered high-dose oxygen therapy and/or a specific drug administered by nasal spray. No tablets or strong analgesics should be used. Preventive options include a blood pressure medication, which reportedly helps manage the bouts of well-known people.

But consultant specialists believe 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 length of the cycle determines the approach.” Short bouts with infrequent episodes are managed with acute therapy only. More prolonged 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 area of the skull where the pain is that reduces nerve activity.

The official guidelines need updating to reflect a