Full-Blown Suffering: My Struggle Against the Enigmatic Pain of Cluster Headaches

It was a dreary Monday morning in September 2016. I was working as a educator, attempting to manage a new class, when a intense pain erupted behind my right eye. Then came quick stabs, reminiscent of electric shocks. As the school day came and went, the pain eased and then returned with increased intensity. Four times that day I left a teaching assistant with worksheets and hurried to the school bathroom to douse my face with cold water. I tried aspirin, but the agony remained unbearable.

The headaches returned repeatedly that fall, and once more in spring, soon forming an yearly cycle. September and October were the worst, then February and March. I could predict the pattern: a warning sensation in the morning, early pangs on the train, full-on agony in class by 9.30am. In late 2019, a doctor finally sent me to a neurologist and I was given a diagnosis with cluster headaches.

This condition often start with intense pain around a single eye that persists up to three hours.

Approximately 1 in 1000 people suffer by the condition, and males are more often diagnosed. Attacks usually begin with abrupt, severe pain focused on one eye that peaks within minutes and lasts for up to three hours. Attacks occur in cycles, every day or several times a day, and are accompanied by red or watery eyes, sagging eyelids or facial perspiration. There exists an episodic type, which arrives in seasonal bouts; some patients have continuous attacks, characterized by the absence of long symptom-free periods.

What unites patients is the intensity. One research paper rated the pain at 9.7 10, more severe than bone fractures or other conditions. Another found 64% of cluster headache patients reported thoughts of self-harm amid attacks; the number dropped to four percent when they were pain-free.

Val Hobbs, 74, a long-term sufferer from Pembrokeshire, isn't surprised. Her attacks began when she was a toddler. “I would hurl myself on the ground and bang my head. That was put down to being spoiled,” she says. Her symptoms worsened through childhood. Drinking in her adolescence, like many triggers, made things worse. After drinking sherry at her graduation party, she recalls barely being able to see on the bus home.

Her relatives often interpreted her attacks as drunken behavior. Support eventually 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 relocating, but often hid her illness. She was fired from one job, partly due to absences during episodes. Her definitive diagnosis came in 2002 at a specialist neurology center.

Nevertheless, the failure to plan daily activities around erratic attacks took its toll. She particularly hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It steals from you of the simple liberties we don't appreciate 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 the ages. “The first account of headache originates from the Mesopotamians in antiquity,” write authors in a publication on the subject. They attributed the disease to an malevolent spirit who afflicted his sufferers' heads.

Historical healing records propose bizarre remedies for what some experts would classify as a migraine. In the medieval times, migraine was recognised as a distinct condition, with treatments ranging from herbal concoctions to other, more folk cures.

It was a European physician who provided the initial comprehensive description of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very severe headache happening and disappearing each day at specific hours”.

The disorder were only formally classified by international headache committees in 1988. From the 1960s to the 1990s, they were thought to be caused by a issue with a major blood vessel that supplies blood to the head. Leading specialists in diagnosing the disorder explain this.

In 1998, researchers released the findings of a research project for which they had triggered cluster headaches in patients and observed the attacks in a brain scanner. The results, featured in a major journal, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

In spite of such progress, identification remains delayed. Jamie Charteris's attacks started in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he underwent multiple surgeries before eventually being diagnosed in 2014, after a physician researched his symptoms.

Specialists say wait times in diagnosing and managing happen because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in severe pain,” a doctor says. He proceeds by eliminating other common headache disorders, such as migraine, before diagnosing the disorder. A detailed history is essential: on which side do signs appear? For how long? What time of year? Are there precipitating factors, such as certain foods? Specific features such as redness, sagging eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be sent to dedicated clinics. But many first go to A&E or are given unsuitable therapies.

A charity trustee, 78, has suffered from the condition for the majority of her adult life, although she has been free from an episode since recent years. When she was in her 20s, she had her molars extracted because dentists misinterpreted her pain. She thinks dentists still need much more awareness. When a sufferer sought help from a charity, it was she who responded. The author recalls calling a helpline during an bout in 2021; a reassuring advisor talked them through oxygen therapy and drugs until the attack eased.

National guidance on management recommend that sufferers are offered high-flow oxygen therapy and/or a specific drug administered by injection. No tablets or strong analgesics should be used. Preventive choices include verapamil, which apparently soothes the bouts of some people.

But consultant neurologists believe the official guidelines need revising to reflect a more defined clinical pathway and help general practitioners avoid misprescribing. For periodic patients, the treatment window is critical: “The duration of the cycle dictates the treatment.” Brief cycles with occasional episodes are handled with abortive treatment alone. More prolonged or more severe bouts require preventative medications such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the head where the discomfort is that decreases nerve activity.

The official guidelines need updating to reflect a