It began on a dreary weekday in the morning in September 2016. I worked as a educator, attempting to manage a new group of students, when a sudden pain bloomed behind my one eye. This was followed by rapid shocks, reminiscent of electric shocks. As each class progressed, the discomfort eased and then came back with increased intensity. Four times that day I handed over a colleague with worksheets and ran to the staff bathroom to douse my face with cold water. I took aspirin, but the pain remained unbearable.
The headaches appeared repeatedly that fall, and again in the spring, soon establishing an yearly cycle. The autumn months were the most severe, then the late winter. I could anticipate the pattern: aura in the morning, early pangs on the commute, full-blown agony in class by 9.30am. In late 2019, a GP finally sent me to a neurologist and I was diagnosed with cluster headaches.
This condition typically begin with intense discomfort behind one eye that lasts up to several hours.
Approximately one in 1,000 individuals suffer by the condition, and men are more often diagnosed. Attacks typically start with sudden, severe pain around a single eye that reaches its peak within minutes and continues for up to three hours. Episodes occur in cycles, daily or several times a day, and are associated with tearing eyes, sagging eyelids or facial perspiration. I have the episodic form, which occurs in periodic bouts; some patients have continuous attacks, characterized by the lack of long symptom-free periods.
What connects sufferers is the intensity. One study rated the sensation at 9.7 out of 10, higher than broken bones or other conditions. A separate discovered a significant percentage of cluster patients experienced thoughts of self-harm amid attacks; the number dropped to four percent when they were pain-free.
Val Hobbs, 74, a long-term sufferer from Pembrokeshire, isn't surprised. Her episodes started when she was a toddler. “I would throw 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, similar to several causes, made things worse. After drinking alcohol at her school leaving party, she remembers barely being able to see on the bus home.
Her family often interpreted her episodes as drunken episodes. Understanding finally 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 office work after relocating, but often concealed her illness. She was fired from one job, partly due to time off during episodes. Her definitive diagnosis came in the early 2000s at a specialist neurology center.
Nevertheless, the inability to plan life around unpredictable pain took its toll. She particularly hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It steals from you of the small liberties we don't value 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 first description of headache originates from the Mesopotamians in antiquity,” write authors in a book on the topic. They attributed the disease to an evil spirit who attacked his sufferers' heads.
Ancient healing records suggest unusual treatments for what modern experts would describe as a headache disorder. In the middle ages, migraine was recognised as a separate condition, with therapies ranging from herbal concoctions to other, more folk remedies.
It was a European physician who provided the initial comprehensive account of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very severe headache occurring and vanishing each day at fixed hours”.
Cluster headaches were only officially recognised by global headache societies in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a key artery which supplies blood to the brain. Leading experts in diagnosing the condition explain this.
In 1998, scientists released the findings of a study for which they had triggered cluster headaches in patients and observed the episodes in a imaging machine. The results, featured in a prominent journal, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.
Despite such progress, diagnosis remains delayed. Jamie Charteris's symptoms started in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he had multiple operations before eventually being correctly identified in 2014, after a physician researched his symptoms.
Specialists say delays in diagnosing and treatment occur because patients are rarely seen mid-attack. “You're tired and depressed, but not in agony,” a doctor says. He works by ruling out other primary headache disorders, such as tension-type headache, before diagnosing the disorder. A detailed history is essential: on which side do symptoms appear? For how much time? What time of year? Are there triggers, such as alcohol? Specific features such as redness, sagging eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be sent to specialist centers. But a lot of first go to A&E or are given inadequate therapies.
Dorothy Chapman, in her late seventies, has experienced cluster headaches for the majority of her life, although she has been free from an episode since 2016. When she was in her twenties, she had her teeth extracted because dental professionals misinterpreted her pain. She believes dentists still need much more education. When a sufferer sought help from a support group, it was she who responded. I remember calling a helpline during an attack in 2021; a reassuring volunteer guided me through oxygen therapy and drugs until the episode eased.
Official guidance on management advise that sufferers are offered high-dose oxygen and/or a specific medication delivered by injection. No oral painkillers or strong analgesics should be used. Preventive options include a blood pressure medication, which reportedly soothes the bouts of well-known individuals.
But consultant neurologists believe the official guidelines need updating to reflect a more defined treatment process and help GPs avoid misprescribing. For periodic patients, timing is everything: “The length of the cycle dictates the approach.” Short bouts with infrequent episodes are handled with abortive treatment only. More prolonged or more intense bouts require preventives such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the side of the head where the discomfort is that reduces nerve activity.
The official guidance need updating to reflect a
