Excruciating Suffering: A Personal Fight Against the Mysterious Suffering of Cluster Headaches

It began on a gloomy weekday morning in September 2016. I worked as a educator, trying to settle a new group of students, when a sudden sensation sprang behind my right eye. It was followed by rapid shocks, similar to electric shocks. As the school day progressed, the discomfort subsided and then came back with increased intensity. Multiple times that day I handed over a teaching assistant with activities and hurried to the school bathroom to soak my face with cold water. I took ibuprofen, but the pain remained unbearable.

The headaches appeared repeatedly that fall, and again in spring, soon forming an annual pattern. September and October were the worst, then the late winter. I could predict the pattern: a warning sensation in the morning, early pangs on the train, full-on agony in class by mid-morning. In 2019, a doctor eventually sent me to a specialist and I was diagnosed with cluster headache disorder.

This condition often begin with intense discomfort behind one eye that persists for three hours.

About 1 in 1000 individuals are affected by the disorder, and men are more frequently affected. Cluster headaches usually begin with abrupt, severe pain focused on a single eye that peaks within a short time and continues for as long as three hours. Episodes come in clusters, daily or multiple times a day, and are associated with red or watery eyes, sagging eyelids or face perspiration. There exists an episodic type, which arrives in seasonal cycles; some patients have chronic attacks, characterized by the lack of long symptom-free periods.

What unites patients is the intensity. One study scored the pain at 9.7 10, higher than broken bones or other conditions. A separate discovered 64% of cluster headache patients reported thoughts of self-harm amid bouts; the number dropped to 4% when they were not in pain.

One patient, 74, a chronic sufferer from Pembrokeshire, isn't surprised. Her attacks started when she was two. “I would throw myself on the floor and hit my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through her youth. Alcohol in her teens, like many triggers, made things worse. After having alcohol at her graduation party, she recalls hardly being able to see on the transport home.

Her relatives often mistook her attacks as drunken behavior. Understanding eventually came from her parent and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after moving, but often concealed her condition. She was dismissed from one job, in part due to absences during episodes. Her definitive diagnosis came in 2002 at a specialist hospital.

Nevertheless, the inability to plan daily activities around erratic attacks 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 children during the incapacitation caused by the worst episodes. “It robs you of the small liberties we don't value until they're gone,” she says. She remembers winning tickets for a major concert, only to have an attack inside a portable toilet.

Headaches have been described across history. “The first description of headache comes by way of the Mesopotamians in antiquity,” write experts in a publication on the subject. They attributed the disease to an evil spirit who afflicted his victims' heads.

Historical healing texts suggest unusual remedies for what some experts would classify as a migraine. In the middle ages, severe headache was identified as a distinct condition, with therapies including bloodletting to other, more superstitious cures.

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

The disorder were only formally classified by international headache committees in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a major artery which supplies blood to the brain. Prominent experts in treating the disorder explain this.

In 1998, researchers released the findings of a research project for which they had triggered cluster headaches in patients and monitored the attacks in a imaging machine. The results, published in a prominent 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 delayed. Jamie Charteris's symptoms started in 1986 and felt like “a balloon being blown up behind my left eye”. GPs thought he had sinus problems; he underwent four surgeries before finally being diagnosed in recently, after a physician looked up his complaints.

Neurologists say delays in diagnosing and treatment occur because patients are seldom seen mid-attack. “You're tired and low, but not in agony,” a doctor says. He works by ruling out other primary headache disorders, such as migraine, before diagnosing cluster headaches. A thorough history is crucial: on which part of the head do signs occur? For how long? What time of year? Are there triggers, such as certain foods? Specific characteristics such as tearing, sagging eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be sent to dedicated centers. But many first go to emergency rooms or are given inadequate therapies.

A charity trustee, 78, has experienced the condition for the majority of her life, although she hasn't had an episode since 2016. When she was in her 20s, she had her molars pulled because dental professionals misunderstood her symptoms. She believes the dental profession still need much more education. When a sufferer sought help from a charity, it was Chapman who responded. I remember calling a helpline during an attack in early 2021; a calm advisor guided them through oxygen therapy and medication until the attack eased.

Official guidance on treatment advise that sufferers are offered high-dose oxygen and/or a anti-migraine medication administered by injection. No tablets or strong analgesics should be used. Preventive options include a blood pressure medication, which reportedly soothes the attacks of well-known people.

But consultant specialists believe the guidance need updating to reflect a clearer treatment pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is everything: “The duration of the bout determines the approach.” Short cycles with occasional episodes are managed with acute treatment only. Longer 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 bout – an procedure into the area of the head where the pain is that reduces nerve activity.

The national guidance need updating to reflect a