🔗 Share this article

It was a dreary Monday in the morning in September 2016. I worked as a educator, trying to settle a new group of students, when a sharp sensation erupted behind my right eye. It was followed by rapid stabs, reminiscent of electric shocks. As each class progressed, the discomfort subsided and then came back with greater intensity. Four times that day I handed over a colleague with activities and hurried to the staff bathroom to douse my face with cold water. I tried aspirin, but the agony remained unrelenting.

The headaches returned repeatedly that fall, and once more in the spring, soon establishing an annual cycle. September and October were the most severe, then February and March. I could anticipate the pattern: aura in the shower, early twinges on the commute, full-on pain in class by 9.30am. In late 2019, a GP finally sent me to a neurologist and I was diagnosed with cluster headache disorder.

Cluster headaches typically start with severe discomfort around one eye that lasts for three hours.

Approximately 1 in 1000 people suffer by the disorder, and males are more often diagnosed. Attacks usually start with sudden, severe pain focused on one eye that reaches its peak within a short time and lasts for up to three hours. Episodes come in clusters, every day or several times a day, and are associated with red or watery eyes, sagging eyelids or face sweating. There exists the episodic form, which occurs in periodic cycles; others have continuous attacks, characterized by the lack of extended pain-free periods.

What connects patients is the intensity. One study scored the sensation at 9.7 10, more severe than bone fractures or other conditions. A separate found 64% of cluster headache patients experienced suicidal thoughts amid attacks; the number dropped to 4% when they were pain-free.

Val Hobbs, 74, a long-term patient from Wales, finds this understandable. Her episodes began when she was two. “I would throw myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through childhood. Alcohol in her teens, similar to many triggers, made things worse. After having sherry at her school leaving party, she recalls hardly being able to see on the bus home.

Her family often mistook her episodes as intoxicated episodes. Understanding eventually came from her parent and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often hid her illness. She was dismissed from one job, in part due to time off during attacks. Her definitive identification came in 2002 at a specialist neurology center.

Nevertheless, the inability to organize life around unpredictable pain took its toll. She particularly disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her children during the incapacitation caused by the most severe 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 significant concert, only to have an episode inside a portable toilet.

---

Headaches have been described throughout history. “The first description of headache comes by way of the Mesopotamians in 4000BC,” write experts in a book on the topic. They attributed the ailment to an evil entity who afflicted his victims' heads.

Ancient medical texts suggest unusual remedies for what some observers would classify as a headache disorder. In the middle ages, severe headache was identified as a distinct disorder, with therapies including herbal concoctions to other, more superstitious remedies.

It was a European physician who provided the initial comprehensive account of a cluster headache. In his writings, he speaks of a patient “suffering with a very severe headache occurring and disappearing each day at fixed hours”.

Cluster headaches were only formally classified by global medical committees in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a key artery that delivers blood to the head. Prominent experts in diagnosing the disorder note this.

In 1998, scientists published the findings of a research project for which they had induced attacks in patients and observed the episodes in a brain scanner. The data, featured in a prominent medical publication, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

Despite such progress, identification remains delayed. Jamie Charteris's attacks started in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he had four surgeries before eventually being diagnosed in 2014, after a physician looked up his symptoms.

Neurologists say wait times in diagnosis and managing occur because patients are rarely seen during an episode. “You're exhausted and low, but not in agony,” one says. He proceeds by ruling out other primary headache disorders, such as tension-type headache, before confirming the disorder. A thorough patient history is essential: on which part of the head do symptoms appear? For how much time? What season? Are there precipitating factors, such as alcohol? Certain features such as redness, sagging eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be referred to specialist centers. But many first arrive to emergency rooms or are given inadequate therapies.

A charity trustee, in her late seventies, has experienced the condition for the majority of her life, although she has been free from an episode since recent years. When she was in her 20s, she had her teeth pulled because dentists misinterpreted her symptoms. She thinks dentists still need greater education. When a sufferer sought help from a charity, it was she who replied. I remember calling a support line during an attack in 2021; a reassuring advisor talked me through oxygen therapy and drugs until the attack passed.

Official guidance on treatment advise 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 bouts of some individuals.

But leading neurologists believe the guidance need revising to reflect a clearer treatment pathway and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The duration of the cycle determines the approach.” Brief cycles with infrequent episodes are handled with acute treatment alone. Longer or more intense bouts require preventative medications such as certain drugs, sometimes paired with corticosteroids. Many 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 activity.

The official guidance need revising to reflect a