Unbearable Suffering: A Personal Struggle Against the Puzzling Pain of Cluster Headache Syndrome

It was a dreary Monday morning in September 2016. I was working as a educator, attempting to manage a new class, when a intense sensation bloomed behind my right eye. It was followed by rapid stabs, like lightning bolts. As the school day progressed, the pain subsided and then came back with greater intensity. Four times that day I left a teaching assistant with worksheets and hurried to the staff bathroom to soak my face with cold water. I tried aspirin, but the agony remained unbearable.

The headaches appeared frequently that autumn, and again in spring, soon forming an yearly pattern. The autumn months were the most severe, then February and March. I could anticipate the pattern: a warning sensation in the morning, early pangs on the train, full-blown pain in the classroom by mid-morning. In 2019, a GP eventually sent me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition often begin with severe discomfort behind one eye that lasts up to three hours.

Approximately one in 1,000 people suffer by the disorder, and males are more often diagnosed. Cluster headaches usually begin with abrupt, severe pain around one 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 accompanied by tearing eyes, sagging eyelids or facial perspiration. I have the episodic form, which arrives in periodic bouts; others have chronic attacks, characterized by the lack of extended pain-free periods.

What connects sufferers is the intensity. One research paper rated the sensation at 9.7 10, higher than bone fractures or other conditions. Another discovered 64% of cluster patients reported suicidal thoughts amid attacks; the figure dropped to 4% when they were not in pain.

Val Hobbs, in her seventies, a long-term patient from Pembrokeshire, isn't surprised. Her attacks began when she was a toddler. “I would throw myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her condition worsened through childhood. Drinking in her adolescence, similar to several causes, made things more intense. After drinking alcohol at her graduation party, she recalls barely being able to see on the transport home.

Her relatives often mistook her episodes as intoxicated episodes. Support 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 relocating, but often concealed her condition. She was fired from one job, in part due to absences during episodes. Her definitive identification came in 2002 at a national neurology center.

Still, the failure to organize daily activities around unpredictable attacks took its effect. She particularly disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It steals from you of the simple liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a portable toilet.

Headaches have been documented throughout history. “The first account of headache comes by way of the ancient civilizations in antiquity,” write experts in a book on the topic. They linked the ailment to an malevolent entity who attacked his sufferers' heads.

Ancient healing texts propose bizarre treatments for what some experts would describe as a headache disorder. In the middle ages, severe headache was identified as a separate condition, with treatments including herbal concoctions to other, more superstitious cures.

It was a European doctor who provided the initial comprehensive description of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very severe headache occurring and disappearing 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 problem with a major artery that supplies blood to the head. Leading specialists in diagnosing the condition note this.

In the late 1990s, scientists released the results of a study for which they had triggered attacks in patients and monitored the episodes in a imaging machine. The data, published in a major journal, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

Despite such progress, identification remains slow. One man's symptoms started in 1986 and felt like “a balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he underwent four operations before eventually being correctly identified in recently, after a physician looked up his symptoms.

Specialists say delays in diagnosis and treatment happen because patients are rarely seen during an episode. “You're exhausted and low, but not in severe pain,” one says. He proceeds by ruling out other common headache conditions, such as tension-type headache, before confirming cluster headaches. A detailed patient history is essential: on which side do signs appear? For how much time? What season? Are there precipitating factors, such as alcohol? Specific features such as redness, sagging eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be sent to specialist centers. But many first arrive to A&E or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for the majority of her adult life, although she has been free from an attack since 2016. When she was in her twenties, she had her teeth pulled because dentists misunderstood her symptoms. She believes the dental profession still need much more education. When another patient sought help from a support group, it was she who responded. I remember calling a helpline during an bout in early 2021; a calm volunteer talked them through oxygen treatment and drugs until the attack eased.

National guidelines on treatment recommend that sufferers are offered high-flow oxygen and/or a specific drug administered by injection. No tablets or opioids should be used. Preventive choices include a blood pressure medication, which apparently helps manage the attacks of well-known individuals.

But consultant neurologists believe the official guidelines need revising to reflect a more defined clinical process and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The duration of the bout determines the treatment.” Short cycles with occasional attacks are managed with abortive therapy only. More prolonged or more severe bouts require preventative medications such as certain drugs, sometimes paired with steroids. A significant number of 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 signals.

The official guidance need revising to reflect a