Excruciating Pain: My Fight With the Enigmatic Suffering of Cluster Headaches

It began on a overcast Monday morning in September 2016. I worked as a educator, attempting to manage a new class, when a intense pain bloomed behind my right eye. This was followed by quick jolts, like electric shocks. As the school day came and went, the discomfort subsided and then came back with greater force. Four times that day I handed over a teaching assistant with activities and hurried to the school bathroom to soak my face with cool water. I took aspirin, but the pain remained unrelenting.

The attacks returned frequently that fall, and again in the spring, soon establishing an yearly cycle. September and October were the most severe, then the late winter. I could anticipate the pattern: a warning sensation in the shower, early twinges on the commute, full-on agony in the classroom by 9.30am. In 2019, a doctor eventually sent me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches often begin with intense discomfort around a single eye that persists for three hours.

About one in 1,000 people are affected by the disorder, and males are more frequently affected. Cluster headaches typically begin with abrupt, severe pain around a single eye that reaches its peak within minutes and lasts for up to three hours. Attacks come in clusters, every day or several times a day, and are accompanied by tearing eyes, drooping eyelids or face perspiration. I have an episodic type, which occurs in periodic bouts; some patients have chronic attacks, defined by the absence of extended pain-free periods.

What connects sufferers is the intensity. One study rated the pain at 9.7 out of 10, more severe than broken bones or other conditions. Another discovered 64% of cluster patients reported thoughts of self-harm amid attacks; the number dropped to four percent when they were pain-free.

One patient, 74, a long-term sufferer from Pembrokeshire, isn't surprised. Her attacks started when she was a toddler. “I would throw myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her condition worsened through her youth. Drinking in her adolescence, similar to many causes, made things more intense. After drinking alcohol at her graduation party, she remembers barely being able to see on the bus home.

Her relatives often mistook her episodes as drunken episodes. Support eventually came from her parent and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after moving, but often concealed her condition. She was dismissed from one job, partly due to time off during episodes. Her breakthrough diagnosis came in 2002 at a specialist hospital.

Nevertheless, the inability to plan daily activities around erratic pain took its effect. She especially hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It steals from you of the simple liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an episode inside a portable toilet.

Headaches have been described throughout the ages. “The earliest description of headache originates from the Mesopotamians in 4000BC,” write authors in a book on the subject. They attributed the ailment to an malevolent entity who afflicted his victims' heads.

Historical medical texts suggest bizarre treatments for what some experts would classify as a headache disorder. In the middle ages, severe headache was recognised as a separate disorder, with therapies including bloodletting to other, more folk remedies.

It was a European doctor who provided the first detailed account of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very severe headache occurring and disappearing each day at specific hours”.

Cluster headaches were only officially classified by global medical societies in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a issue with a major artery that delivers blood to the brain. Prominent specialists in diagnosing the condition note this.

In 1998, researchers published the results of a study for which they had triggered attacks in patients and monitored the episodes in a imaging machine. The results, published in a major medical publication, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

In spite of such progress, identification remains slow. One man's attacks began in 1986 and felt like “a balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he had multiple operations before eventually being correctly identified in 2014, after a physician looked up his symptoms.

Neurologists say wait times in diagnosing and managing occur because patients are rarely seen mid-attack. “You're tired and depressed, but not in agony,” one says. He proceeds by eliminating other primary head pain disorders, such as migraine, before diagnosing cluster headaches. A detailed history is crucial: on which part of the head do signs appear? For how much time? What time of year? Are there triggers, such as certain foods? Specific features such as redness, drooping eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be referred to dedicated centers. But a lot of first arrive to emergency rooms or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has suffered from the condition for the majority of her life, although she hasn't had an attack since recent years. When she was in her twenties, she had her molars extracted because dental professionals misinterpreted her pain. She thinks the dental profession still need greater education. When another patient sought help from a charity, it was she who replied. The author recalls calling a helpline during an attack in early 2021; a calm volunteer guided me through oxygen treatment and drugs until the attack passed.

National guidelines on treatment advise that patients are offered high-flow oxygen and/or a anti-migraine drug administered by injection. No tablets or opioids should be used. Prophylactic choices include verapamil, which apparently helps manage the bouts of some people.

But consultant neurologists argue the guidance need revising to reflect a clearer clinical process and help GPs avoid misprescribing. For periodic patients, the treatment window is critical: “The length of the bout determines the approach.” Short bouts with infrequent attacks are managed with abortive treatment only. More prolonged or more intense bouts require preventives such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the head where the discomfort is that reduces nerve signals.

The national guidance need revising to reflect a