Excruciating Agony: My Battle With the Enigmatic Pain of Cluster Headache Syndrome

It was a overcast weekday in the morning in the autumn of 2016. I was working as a teacher, trying to settle a new class, when a sharp pain bloomed behind my one eye. Then came rapid jolts, reminiscent of electric shocks. As each class progressed, the discomfort subsided and then came back with greater intensity. Multiple times that day I handed over a teaching assistant with activities and ran to the school bathroom to douse my face with cold water. I took paracetamol, but the pain remained unbearable.

The attacks returned repeatedly that fall, and again in the spring, soon forming an yearly pattern. The autumn months were the worst, then February and March. I could predict the pattern: a warning sensation in the shower, early twinges on the commute, full-on agony in class by 9.30am. In late 2019, a GP eventually sent me to a specialist and I was diagnosed with cluster headache disorder.

This condition often start with severe discomfort around one eye that persists up to several hours.

Approximately 1 in 1000 individuals are affected by the disorder, and males are more often affected. Cluster headaches typically start with sudden, severe pain around a single eye that reaches its peak within a short time and continues for as long as three hours. Attacks occur in cycles, every day or several times a day, and are associated with tearing eyes, drooping eyelids or face sweating. I have the episodic form, which arrives in periodic cycles; some patients have chronic attacks, defined by the lack of long pain-free periods.

What connects sufferers is the severity. One study rated the pain at 9.7 out of 10, higher than broken bones or pancreatitis. A separate discovered 64% of cluster patients reported suicidal thoughts amid attacks; the figure dropped to four percent when they were not in pain.

Val Hobbs, 74, a chronic patient from Wales, finds this understandable. Her attacks began when she was two. “I would hurl 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, similar to many causes, made things more intense. After having sherry at her school leaving party, she remembers barely being able to see on the transport home.

Her relatives often interpreted her attacks as intoxicated episodes. Support eventually came from her parent and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after relocating, but often concealed her condition. She was fired from one job, partly due to absences during attacks. Her breakthrough diagnosis came in the early 2000s at a specialist hospital.

Nevertheless, the failure to plan daily activities around erratic pain took its toll. She especially disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It steals from you of the simple liberties we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a portable toilet.

Headaches have been described throughout the ages. “The earliest account of headache originates from the Mesopotamians in antiquity,” write experts in a book on the topic. They linked the ailment to an evil entity who attacked his sufferers' heads.

Ancient medical records suggest unusual remedies for what some observers would describe as a headache disorder. In the middle ages, migraine was recognised as a distinct disorder, with therapies ranging from bloodletting to other, more folk cures.

It was a European doctor who provided the first detailed description of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very severe headache occurring and disappearing daily at fixed hours”.

Cluster headaches were only officially recognised by global medical societies in 1988. From the 1960s to the 1990s, they were believed to be caused by a issue with a major artery that supplies blood to the head. Leading specialists in diagnosing the disorder note this.

In 1998, scientists published the results of a study for which they had triggered cluster headaches in patients and observed the attacks in a brain scanner. The data, 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 deactivation when they recovered.

In spite of such progress, diagnosis remains slow. Jamie Charteris's symptoms started in 1986 and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he underwent four operations before eventually being diagnosed in 2014, after a physician looked up his symptoms.

Neurologists say delays in diagnosing and managing occur because patients are seldom seen during an episode. “You're tired and low, but not in severe pain,” a doctor says. He proceeds by ruling out other primary head pain disorders, such as tension-type headache, before confirming 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 characteristics such as redness, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent to specialist clinics. But a lot of first arrive to A&E or are given unsuitable treatments.

A charity trustee, 78, has suffered from cluster headaches for most of her life, although she hasn't had an episode since recent years. When she was in her twenties, she had her teeth pulled because dental professionals misinterpreted her symptoms. She thinks the dental profession still need much more education. When a sufferer sought help from a support group, it was she who replied. I remember calling a helpline during an attack in early 2021; a reassuring advisor guided me through oxygen therapy and medication until the attack passed.

Official guidelines on management advise that sufferers are offered high-dose oxygen and/or a anti-migraine drug delivered by nasal spray. No tablets or opioids should be used. Preventive options include a blood pressure medication, which apparently helps manage the attacks of well-known individuals.

But consultant neurologists believe the guidance need updating to reflect a clearer treatment pathway and help GPs avoid misprescribing. For periodic patients, the treatment window is critical: “The length of the cycle determines the treatment.” Short cycles with infrequent attacks are managed with acute therapy only. More prolonged or more intense bouts require preventative medications such as verapamil, sometimes paired with steroids. Many patients also receive a nerve block injection during a cycle – an injection into the area of the skull where the discomfort is that decreases nerve activity.

The official guidance need revising to reflect a