Excruciating Pain: My Struggle Against the Mysterious Suffering of Cluster Headache Syndrome

It began on a overcast weekday in the morning in September 2016. I was working as a educator, attempting to manage a new group of students, when a sharp pain bloomed behind my right eye. It was followed by quick stabs, similar to lightning bolts. As the school day came and went, the discomfort eased and then came back with greater force. Multiple times that day I left a teaching assistant with worksheets and hurried to the staff bathroom to douse my face with cool water. I tried paracetamol, but the agony remained unbearable.

The headaches appeared frequently that fall, and once more in spring, soon establishing an yearly pattern. The autumn months were the most severe, then February and March. I could predict the routine: a warning sensation in the shower, early pangs on the train, full-blown agony in class by 9.30am. In 2019, a doctor finally referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often start with severe discomfort behind a single eye that persists for three hours.

Approximately one in 1,000 individuals suffer by the condition, and males are more often diagnosed. Cluster headaches typically start with sudden, severe pain focused on one eye that reaches its peak within a short time and continues for as long as three hours. Attacks come in clusters, every day or several times a day, and are accompanied by tearing eyes, drooping eyelids or facial perspiration. There exists an episodic type, which arrives in seasonal bouts; some patients have chronic attacks, characterized by the lack of extended symptom-free periods.

What connects patients is the intensity. One research paper rated the pain at 9.7 10, higher than broken bones or pancreatitis. A separate found 64% of cluster headache patients experienced thoughts of self-harm during attacks; the number fell to four percent when they were not in pain.

Val Hobbs, 74, a long-term patient from Wales, isn't surprised. Her attacks started when she was two. “I would hurl myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her condition deteriorated through childhood. Drinking in her teens, like many causes, made things worse. After having alcohol at her school leaving party, she recalls barely being able to see on the bus home.

Her relatives often interpreted her episodes as drunken behavior. Understanding finally came from her parent and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after moving, but often concealed her illness. She was dismissed from one job, partly due to absences during episodes. Her breakthrough diagnosis came in 2002 at a specialist hospital.

Nevertheless, the inability to plan life around erratic pain took its effect. 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 children during the paralysis caused by the worst episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an episode inside a facility.

Headaches have been documented throughout history. “The earliest account of headache comes by way of the ancient civilizations in antiquity,” write authors in a book on the topic. They attributed the disease to an evil spirit who afflicted his victims' heads.

Historical medical records suggest bizarre treatments for what some experts would describe as a migraine. In the medieval times, severe headache was recognised as a distinct disorder, with treatments including bloodletting to other, more folk cures.

It was a Dutch doctor who provided the first detailed account of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very severe headache occurring and disappearing daily at fixed hours”.

The disorder were only officially classified by international medical committees in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a major artery which delivers blood to the head. Leading specialists in diagnosing the disorder explain this.

In 1998, scientists released the findings of a study for which they had induced attacks in patients and monitored the episodes in a brain scanner. The results, published in a major journal, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

Despite such progress, identification remains delayed. Jamie Charteris's symptoms began in the 1980s and felt like “a balloon being blown up behind my one eye”. GPs thought he had sinus problems; he had four operations before eventually being correctly identified in 2014, after a doctor researched his symptoms.

Specialists say delays in diagnosing and treatment occur because patients are rarely seen mid-attack. “You're tired and depressed, but not in agony,” a doctor says. He works by eliminating other primary headache disorders, such as tension-type headache, before confirming cluster headaches. A thorough patient history is crucial: on which side do signs occur? For how much time? What time of year? Are there precipitating factors, such as alcohol? Specific characteristics such as tearing, drooping eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be referred to specialist centers. But a lot of first arrive to A&E or are given inadequate therapies.

Dorothy Chapman, 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 twenties, she had her molars pulled because dental professionals misunderstood her symptoms. She believes the dental profession still need much more awareness. When a sufferer sought help from a charity, it was she who responded. I remember calling a support line during an bout in early 2021; a calm volunteer guided me through oxygen treatment and drugs until the attack eased.

National guidelines on treatment advise that patients are offered high-flow oxygen and/or a anti-migraine medication delivered by nasal spray. No tablets or strong analgesics should be used. Prophylactic options include a blood pressure medication, which apparently helps manage the attacks of well-known individuals.

But leading specialists believe the official guidelines need revising to reflect a more defined clinical process and help GPs avoid misprescribing. For episodic patients, the treatment window is everything: “The length of the bout dictates the approach.” Brief cycles with infrequent episodes are managed with acute treatment only. More prolonged or more intense periods require preventative medications such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the skull where the pain is that decreases nerve activity.

The official guidance need updating to reflect a