Full-Blown Suffering: My Struggle With the Puzzling Suffering of Cluster Headaches

It began on a gloomy weekday in the morning in the autumn of 2016. I was working as a educator, attempting to manage a new group of students, when a intense pain erupted behind my right eye. Then came rapid shocks, similar to lightning bolts. As the school day came and went, the discomfort eased and then returned with increased force. Multiple times that day I handed over a teaching assistant with worksheets and ran to the staff bathroom to soak my face with cool water. I took aspirin, but the pain remained unbearable.

The headaches appeared repeatedly that fall, and once more in spring, soon forming an annual cycle. September and October were the worst, then February and March. I could anticipate the pattern: a warning sensation in the morning, early twinges on the train, full-blown pain in the classroom by mid-morning. In 2019, a doctor finally referred me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches often begin with severe pain around one eye that persists for several hours.

About one in 1,000 people are affected by the disorder, and males are more frequently affected. Attacks usually start with abrupt, severe agony around one eye that reaches its peak within minutes and lasts for up to three hours. Attacks occur in cycles, every day or several times a day, and are associated with tearing eyes, drooping eyelids or facial perspiration. I have an episodic type, which occurs in seasonal bouts; others have continuous attacks, characterized by the lack of extended symptom-free periods.

What connects patients is the severity. One research paper rated the pain at 9.7 out of 10, more severe than broken bones or other conditions. A separate discovered 64% of cluster headache patients experienced suicidal thoughts amid bouts; the number dropped to four percent when they were pain-free.

Val Hobbs, in her seventies, a long-term patient from Pembrokeshire, isn't surprised. Her episodes began when she was a toddler. “I would hurl 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 several triggers, made things more intense. After having alcohol at her school leaving party, she recalls hardly being able to see on the bus home.

Her family often mistook her attacks as drunken behavior. Support eventually came from her father and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after relocating, but often concealed her condition. She was fired from one job, partly due to time off during attacks. Her definitive identification came in 2002 at a national neurology center.

Still, the inability to plan life around unpredictable pain took its effect. She particularly disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It robs 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 attack inside a facility.

Headaches have been described throughout history. “The earliest description of headache originates from the Mesopotamians in 4000BC,” write experts in a publication on the topic. They linked the ailment to an evil entity who afflicted his sufferers' heads.

Historical medical texts propose bizarre treatments for what modern experts would classify as a headache disorder. In the medieval times, migraine was identified as a separate condition, with therapies ranging from bloodletting to other, more superstitious cures.

It was a European doctor who provided the first comprehensive description of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very severe headache occurring and vanishing each day at fixed hours”.

The disorder were only formally classified by global medical societies in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a major artery which supplies blood to the head. Prominent experts in diagnosing the condition explain this.

In the late 1990s, researchers released the findings of a research project for which they had induced cluster headaches in patients and observed the attacks in a brain scanner. The results, 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.

In spite of such progress, identification remains slow. One man's symptoms began in the 1980s and felt like “a balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he underwent four operations before eventually being correctly identified in 2014, after a physician looked up his symptoms.

Neurologists say delays in diagnosis and managing happen because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in severe pain,” one says. He proceeds by eliminating other common headache conditions, such as tension-type headache, before diagnosing cluster headaches. A thorough patient history is crucial: on which side do signs occur? For how long? What season? Are there triggers, such as alcohol? Specific characteristics such as tearing, sagging eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be sent to specialist clinics. But a lot of first go to A&E or are given inadequate treatments.

A charity trustee, 78, has experienced cluster headaches for most of her life, although she has been free from an episode since recent years. When she was in her 20s, she had her molars pulled because dental professionals misunderstood her pain. She believes dentists still need greater education. When a sufferer sought help from a support group, it was Chapman who responded. I remember calling a support line during an attack in early 2021; a calm advisor talked them through oxygen treatment and drugs until the episode passed.

National guidelines on management recommend that sufferers are offered high-dose oxygen therapy and/or a anti-migraine drug delivered by injection. No oral painkillers or opioids should be used. Preventive options include verapamil, which reportedly helps manage the attacks of well-known individuals.

But consultant neurologists believe the guidance need revising to reflect a more defined treatment process and help GPs avoid misprescribing. For periodic patients, the treatment window is everything: “The duration of the cycle determines the approach.” Short bouts with infrequent episodes are managed with abortive treatment only. More prolonged or more intense periods require preventives such as verapamil, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the head where the pain is that decreases nerve signals.

The national guidance need updating to reflect a