🔗 Share this article

It began on a overcast weekday in the morning in the autumn of 2016. I worked as a educator, attempting to manage a new class, when a sudden sensation bloomed behind my one eye. This was followed by rapid stabs, like lightning bolts. As the school day came and went, the pain eased and then returned with increased intensity. Multiple times that day I left a teaching assistant with activities and ran to the staff bathroom to douse my face with cold water. I took aspirin, but the pain remained unbearable.

The headaches returned frequently that autumn, and again in spring, soon establishing an annual pattern. September and October were the most severe, then the late winter. I could anticipate the routine: a warning sensation in the morning, early pangs on the train, full-blown pain in class by mid-morning. In late 2019, a GP finally referred me to a specialist and I was given a diagnosis with cluster headaches.

This condition typically start with severe discomfort behind a single eye that lasts up to several hours.

Approximately one in 1,000 people suffer by the condition, and men are more often affected. Cluster headaches usually begin with abrupt, severe pain around one eye that peaks within minutes and lasts for as long as three hours. Episodes occur in cycles, daily or several times a day, and are associated with red or watery eyes, drooping eyelids or facial perspiration. I have an episodic type, which arrives in seasonal cycles; some patients have chronic attacks, characterized by the absence of long symptom-free periods.

What unites patients is the severity. One study rated the pain at 9.7 10, more severe than broken bones or other conditions. Another discovered a significant percentage of cluster patients reported suicidal thoughts amid attacks; the figure dropped to 4% when they were pain-free.

One patient, 74, a chronic patient from Wales, finds this understandable. Her episodes began when she was a toddler. “I would throw myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through childhood. Alcohol in her teens, similar to many causes, made things worse. After having sherry at her graduation party, she remembers barely being able to see on the transport home.

Her relatives often interpreted her attacks as intoxicated episodes. Understanding finally came from her parent and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after relocating, but often hid her illness. She was fired from one job, in part due to time off during episodes. Her definitive diagnosis came in the early 2000s at a specialist neurology center.

Nevertheless, the inability to organize daily activities around erratic attacks took its toll. She especially disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It steals from you of the simple freedoms we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a facility.

---

Headaches have been documented throughout the ages. “The first description of headache originates from the ancient civilizations in 4000BC,” write experts in a book on the subject. They attributed the disease to an malevolent entity who afflicted his sufferers' heads.

Historical medical records propose unusual treatments for what some observers would describe as a headache disorder. In the middle ages, severe headache was identified as a distinct condition, with therapies including herbal concoctions to other, more superstitious cures.

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

The disorder were only officially classified by international medical committees in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a key blood vessel which supplies blood to the head. Leading specialists in diagnosing the disorder note this.

In the late 1990s, researchers released the results of a study for which they had triggered attacks in patients and monitored the attacks in a brain scanner. The data, featured in a prominent journal, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

Despite such progress, diagnosis remains slow. Jamie Charteris's symptoms started in 1986 and felt like “a balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he underwent multiple operations before eventually being diagnosed in recently, after a doctor researched his complaints.

Specialists say wait times in diagnosing and managing occur because patients are seldom seen during an episode. “You're exhausted and low, but not in severe pain,” one says. He works by ruling out other primary headache conditions, such as tension-type headache, before confirming the disorder. A thorough history is essential: on which part of the head do signs appear? For how much time? What time of year? Are there triggers, such as certain foods? Certain features such as tearing, drooping eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be referred to dedicated centers. But many first arrive to emergency rooms or are given unsuitable therapies.

A charity trustee, in her late seventies, has experienced cluster headaches for most of her life, although she hasn't had an attack since recent years. When she was in her 20s, she had her teeth pulled because dentists misinterpreted her symptoms. She believes the dental profession still need much more awareness. When a sufferer sought help from a charity, it was Chapman who replied. I remember calling a helpline during an attack in early 2021; a calm advisor guided me through oxygen therapy and drugs until the attack eased.

National guidelines on treatment recommend that sufferers are offered high-dose oxygen and/or a specific medication administered by injection. No tablets or strong analgesics should be used. Prophylactic options include verapamil, which apparently helps manage the attacks of well-known people.

But consultant specialists argue the guidance need updating to reflect a more defined treatment pathway and help general practitioners avoid misprescribing. For episodic patients, the treatment window is critical: “The length of the bout determines the treatment.” Brief cycles with occasional attacks are handled with abortive therapy alone. More prolonged or more intense bouts require preventives such as verapamil, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the area of the skull where the pain is that decreases nerve activity.

The official guidelines need revising to reflect a