Full-Blown Pain: My Battle Against the Puzzling Suffering of Cluster Headaches

It was a overcast Monday morning in September 2016. I was working as a educator, trying to settle a new class, when a sudden sensation sprang behind my one eye. Then came rapid stabs, similar to electric shocks. As each class came and went, the pain eased and then returned with greater force. Multiple times that day I handed over a colleague with activities and hurried to the staff bathroom to douse my face with cool water. I tried aspirin, but the agony remained unbearable.

The attacks returned repeatedly that fall, and once more in the spring, soon establishing an yearly pattern. The autumn months were the worst, then February and March. I could anticipate the routine: a warning sensation in the morning, early pangs on the commute, full-on agony in the classroom by 9.30am. In late 2019, a doctor eventually sent me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically begin with severe discomfort around a single eye that lasts up to three hours.

Approximately 1 in 1000 individuals are affected by the condition, and men are more often diagnosed. Attacks usually start with abrupt, severe pain focused on a single eye that peaks within minutes and continues for as long as three hours. Episodes come in clusters, every day or several times a day, and are accompanied by red or watery eyes, drooping eyelids or face perspiration. There exists an episodic type, which arrives in seasonal cycles; others have continuous attacks, defined by the lack of extended symptom-free periods.

What connects sufferers is the intensity. One research paper rated the pain at 9.7 out of 10, more severe than broken bones or other conditions. A separate discovered a significant percentage of cluster headache patients experienced suicidal thoughts amid attacks; the figure dropped to four percent when they were not in pain.

One patient, in her seventies, a long-term patient from Wales, finds this understandable. Her episodes began when she was a toddler. “I would throw myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her condition deteriorated through childhood. Alcohol in her teens, similar to several triggers, made things more intense. After having sherry at her school leaving party, she recalls hardly being able to see on the bus home.

Her family often interpreted her episodes as drunken behavior. Understanding eventually came from her parent and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often hid her condition. She was dismissed from one job, in part due to time off during episodes. Her definitive diagnosis came in 2002 at a specialist neurology center.

Still, the inability to organize life around erratic attacks took its toll. She especially hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her family during the incapacitation caused by the most severe episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a portable toilet.

Headaches have been described throughout the ages. “The earliest description of headache comes by way of the Mesopotamians in 4000BC,” write experts in a publication on the subject. They attributed the ailment to an malevolent spirit who attacked his sufferers' heads.

Historical medical records suggest unusual remedies for what modern observers would describe as a migraine. In the medieval times, migraine was identified as a distinct disorder, with therapies ranging from bloodletting to other, more folk remedies.

It was a Dutch doctor who provided the first detailed description of a cluster headache. In his writings, he describes a patient “afflicted with a very severe headache happening and vanishing each day at fixed hours”.

Cluster headaches were only formally classified by international medical societies in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a issue with a major blood vessel which delivers blood to the brain. Prominent specialists in treating the condition explain this.

In the late 1990s, scientists released the results of a study for which they had triggered attacks in patients and observed the attacks in a imaging machine. The data, featured in a major medical publication, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

In spite of such advances, identification remains delayed. One man's attacks started in the 1980s and felt like “a balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he had multiple surgeries before eventually being correctly identified in 2014, after a physician looked up his complaints.

Specialists say delays in diagnosing and managing occur because patients are rarely seen during an episode. “You're exhausted and depressed, but not in severe pain,” one says. He proceeds by ruling out other primary headache disorders, such as tension-type headache, before confirming the disorder. A thorough patient history is essential: on which side do symptoms appear? For how long? What season? Are there triggers, such as certain foods? Certain characteristics such as tearing, sagging eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be referred to specialist clinics. But many first arrive 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 twenties, she had her molars extracted because dental professionals misunderstood her pain. She believes the dental profession still need greater education. When a sufferer sought help from a charity, it was she who replied. The author recalls calling a helpline during an bout in 2021; a reassuring advisor guided them through oxygen therapy and drugs until the episode eased.

Official guidance on management advise that patients are offered high-flow oxygen therapy and/or a specific medication administered by injection. No oral painkillers or strong analgesics should be used. Preventive options include a blood pressure medication, which apparently helps manage the bouts of well-known individuals.

But consultant neurologists believe the guidance need updating to reflect a clearer treatment process and help general practitioners avoid misprescribing. For episodic patients, timing is critical: “The length of the bout dictates the treatment.” Short bouts with infrequent attacks are managed with abortive therapy only. Longer or more severe bouts require preventives such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the area of the skull where the discomfort is that reduces nerve signals.

The official guidance need updating to reflect a