🔗 Share this article

It was a dreary Monday morning in the autumn of 2016. I was working as a educator, attempting to manage a new class, when a sharp pain sprang behind my one eye. It was followed by rapid jolts, similar to lightning bolts. As the school day progressed, the pain subsided and then returned with greater intensity. Four times that day I left a teaching assistant with activities and hurried to the school bathroom to soak my face with cold water. I took ibuprofen, but the agony remained unbearable.

The headaches appeared repeatedly that autumn, and once more in spring, soon establishing an yearly pattern. The autumn months were the most severe, then February and March. I could anticipate the pattern: aura in the morning, early pangs on the train, full-on pain in class by 9.30am. In 2019, a doctor eventually sent me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches often start with severe pain around a single eye that lasts for several hours.

About 1 in 1000 individuals suffer by the condition, and males are more frequently diagnosed. Cluster headaches typically begin with sudden, excruciating pain around a single eye that peaks within minutes and lasts for as long as three hours. Attacks occur in cycles, daily or multiple times a day, and are associated with red or watery eyes, drooping eyelids or facial perspiration. There exists an episodic type, which occurs in seasonal bouts; some patients have chronic cluster headaches, characterized by the lack of extended symptom-free periods.

What connects patients is the intensity. One research paper scored the sensation at 9.7 10, higher than bone fractures or other conditions. A separate discovered 64% of cluster headache patients reported suicidal thoughts during attacks; the figure dropped to four percent when they were pain-free.

One patient, 74, a chronic sufferer from Pembrokeshire, isn't surprised. Her episodes started when she was two. “I would hurl myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through her youth. Alcohol in her teens, similar to many causes, made things more intense. After having alcohol at her graduation party, she remembers hardly being able to see on the transport home.

Her family often interpreted her attacks as drunken episodes. Support finally came from her father and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after moving, but often concealed her illness. She was fired from one job, partly due to time off during episodes. Her definitive identification came in the early 2000s at a specialist neurology center.

Still, the inability to plan daily activities around unpredictable pain took its toll. She especially disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It steals from you of the small freedoms we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack 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 linked the disease to an evil spirit who attacked his victims' heads.

Ancient medical records suggest unusual remedies for what modern observers would describe as a migraine. In the medieval times, migraine was recognised as a separate condition, with therapies ranging from herbal concoctions to other, more folk cures.

It was a Dutch doctor who provided the initial detailed account of a cluster headache. In his writings, he speaks of a patient “suffering with a very intense headache happening and disappearing each day at specific hours”.

Cluster headaches were only officially recognised by global medical committees in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a key artery which delivers blood to the brain. Leading experts in diagnosing the disorder note this.

In 1998, scientists published the findings of a research project for which they had triggered attacks in patients and monitored the episodes in a imaging machine. The data, featured in a major journal, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they felt better.

In spite of such progress, identification remains delayed. Jamie Charteris's symptoms began in 1986 and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he had four surgeries before finally being correctly identified in 2014, after a physician researched his complaints.

Neurologists say wait times in diagnosis and treatment occur because patients are seldom seen mid-attack. “You're tired and low, but not in agony,” one says. He proceeds by ruling out other primary head pain disorders, such as tension-type headache, before diagnosing cluster headaches. A thorough patient history is crucial: on which side do symptoms appear? For how much time? What time of year? Are there triggers, such as certain foods? Specific characteristics such as redness, sagging eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent to dedicated clinics. But a lot of first go to emergency rooms or are given unsuitable treatments.

A charity trustee, in her late seventies, has suffered from the condition for most of her adult life, although she has been free from an attack since 2016. When she was in her 20s, she had her molars pulled because dental professionals misunderstood her pain. She thinks the dental profession still need greater education. When another patient sought help from a support group, it was Chapman who replied. I remember calling a helpline during an attack in early 2021; a reassuring volunteer guided them through oxygen therapy and drugs until the episode passed.

Official guidance on management advise that sufferers are offered high-dose oxygen therapy and/or a specific drug administered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive choices include verapamil, which reportedly soothes the attacks of some individuals.

But leading neurologists argue the guidance need revising to reflect a more defined clinical process and help GPs avoid misprescribing. For periodic patients, timing is everything: “The duration of the bout dictates the approach.” Short cycles with occasional episodes are managed 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 cycle – an injection into the side of the skull where the discomfort is that reduces nerve signals.

The official guidance need revising to reflect a