🔗 Share this article

It was a overcast weekday in the morning in September 2016. I was working as a educator, attempting to manage a new class, when a sharp sensation sprang behind my one eye. This was followed by rapid shocks, like lightning bolts. As the school day came and went, the pain subsided and then came back with increased force. Four times that day I left a teaching assistant with worksheets and hurried to the staff bathroom to douse my face with cool water. I took aspirin, but the pain remained unbearable.

The headaches appeared repeatedly that autumn, and again in the spring, soon establishing an annual pattern. September and October were the worst, then the late winter. I could anticipate the routine: a warning sensation in the shower, early pangs on the train, full-blown pain in the classroom by 9.30am. In 2019, a GP finally sent me to a neurologist and I was given a diagnosis with cluster headaches.

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

Approximately 1 in 1000 people suffer by the disorder, and males are more often diagnosed. Cluster headaches usually begin with abrupt, severe agony focused on a single eye that reaches its peak within a short time and lasts for as long as three hours. Episodes come in clusters, daily or several times a day, and are accompanied by tearing eyes, drooping eyelids or facial perspiration. There exists an episodic type, which arrives in seasonal bouts; some patients have chronic attacks, characterized by the absence of extended symptom-free periods.

What unites sufferers is the intensity. One research paper scored the pain at 9.7 out of 10, more severe than broken bones or pancreatitis. A separate discovered a significant percentage of cluster patients reported thoughts of self-harm during bouts; the figure fell to four percent when they were pain-free.

Val Hobbs, 74, a chronic sufferer from Wales, isn't surprised. Her attacks began when she was two. “I would throw myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through childhood. Alcohol in her teens, like many triggers, made things more intense. After drinking sherry at her graduation party, she recalls hardly being able to see on the bus home.

Her family often mistook her episodes as drunken behavior. Support finally came from her parent and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after moving, but often hid her condition. She was dismissed from one job, partly due to absences during episodes. Her definitive diagnosis came in 2002 at a specialist neurology center.

Still, the failure to plan life around erratic pain took its effect. She especially disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her family 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 episode inside a facility.

---

Headaches have been described throughout history. “The first description of headache originates from the Mesopotamians in 4000BC,” write experts in a book on the topic. They linked the disease to an evil spirit who afflicted his victims' heads.

Historical healing records propose unusual treatments for what modern experts would classify as a migraine. In the medieval times, migraine was identified as a distinct condition, with therapies including herbal concoctions to other, more superstitious remedies.

It was a European physician who provided the first detailed account of a cluster-type attack. In his writings, he describes a patient “suffering with a very intense headache occurring and vanishing daily at fixed hours”.

The disorder were only formally classified by international headache societies in 1988. From the 1960s to the late 1990s, they were thought to be caused by a issue with a major artery which delivers blood to the brain. Prominent experts in diagnosing the disorder explain this.

In 1998, scientists published the findings of a study for which they had triggered cluster headaches in patients and monitored the attacks in a brain scanner. The results, published in a major medical publication, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

Despite such progress, identification remains delayed. Jamie Charteris's attacks started in 1986 and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he had four operations before eventually being diagnosed in 2014, after a doctor researched his symptoms.

Neurologists say delays in diagnosis and managing occur because patients are seldom seen mid-attack. “You're exhausted and low, but not in agony,” a doctor says. He proceeds by ruling out other common head pain disorders, such as migraine, before diagnosing cluster headaches. A detailed history is essential: on which part of the head do symptoms appear? For how long? What time of year? Are there triggers, such as alcohol? Specific characteristics such as tearing, drooping eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be referred to specialist clinics. But a lot of first go to emergency rooms 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 20s, she had her molars extracted because dental professionals misunderstood her symptoms. She thinks the dental profession still need much more awareness. When another patient sought help from a charity, it was Chapman who replied. The author recalls calling a support line during an bout in early 2021; a reassuring volunteer guided them through oxygen treatment and drugs until the attack passed.

Official guidance on treatment recommend that patients are offered high-dose oxygen therapy and/or a anti-migraine drug delivered by injection. No oral painkillers or opioids should be used. Preventive choices include a blood pressure medication, which apparently soothes the attacks of well-known people.

But leading neurologists believe the official guidelines need updating to reflect a more defined treatment process and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is everything: “The length of the bout determines the approach.” Short cycles with occasional attacks are handled with abortive therapy only. Longer or more intense 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 bout – an procedure into the area of the skull where the pain is that reduces nerve activity.

The official guidelines need updating to reflect a