Full-Blown Suffering: A Personal Struggle With the Mysterious Pain of Cluster Headache Syndrome

It began on a dreary weekday in the morning in September 2016. I was working as a teacher, trying to settle a new class, when a sharp pain bloomed behind my one eye. Then came quick stabs, like electric shocks. As the school day progressed, the pain eased and then came back with increased force. Four times that day I left a colleague with worksheets and ran to the school bathroom to douse my face with cold water. I took aspirin, but the pain remained unbearable.

The headaches returned repeatedly that autumn, and once more in the spring, soon forming an annual cycle. The autumn months were the worst, then the late winter. I could anticipate the routine: aura in the morning, early pangs on the train, full-blown agony in class by 9.30am. In late 2019, a doctor eventually referred me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches often start with intense discomfort around one eye that persists for several hours.

About 1 in 1000 people suffer by the condition, and males are more often affected. Attacks usually start with sudden, severe pain focused on one eye that peaks within a short time and continues for up to three hours. Attacks come in clusters, daily or multiple times a day, and are associated with red or watery eyes, sagging eyelids or face sweating. There exists an episodic type, which occurs in periodic bouts; some patients have chronic cluster headaches, defined by the lack of extended symptom-free periods.

What connects patients is the intensity. One study rated the pain at 9.7 out of 10, more severe than bone fractures or pancreatitis. A separate discovered a significant percentage of cluster patients experienced suicidal thoughts during bouts; the figure dropped to 4% when they were not in pain.

One patient, in her seventies, a chronic sufferer from Wales, finds this understandable. Her attacks started when she was two. “I would throw myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through childhood. Alcohol in her teens, like many triggers, made things more intense. After having sherry at her graduation party, she recalls hardly being able to see on the bus home.

Her family often interpreted her episodes as intoxicated episodes. Understanding finally came from her father and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after moving, but often hid her illness. She was fired from one job, in part due to time off during attacks. Her definitive diagnosis came in 2002 at a specialist hospital.

Still, the failure to organize life around unpredictable attacks took its toll. She particularly disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her children during the incapacitation caused by the worst episodes. “It robs you of the simple freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a portable toilet.

Headaches have been documented across history. “The first description of headache originates from the ancient civilizations in 4000BC,” write authors in a book on the topic. They attributed the ailment to an malevolent entity who afflicted his sufferers' heads.

Historical medical records propose bizarre treatments for what some observers would describe as a migraine. In the medieval times, migraine was identified as a distinct condition, with therapies ranging from herbal concoctions to other, more superstitious remedies.

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

Cluster headaches were only formally classified by global headache committees in 1988. 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. Leading specialists in diagnosing the disorder note this.

In the late 1990s, researchers published the results of a study for which they had triggered cluster headaches in patients and monitored the attacks in a brain scanner. The results, featured in a prominent medical publication, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

Despite such advances, identification remains slow. One man's attacks began in 1986 and felt like “a balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he underwent multiple surgeries before finally being correctly identified in recently, after a physician researched his symptoms.

Specialists say wait times in diagnosing and treatment occur because patients are rarely seen during an episode. “You're tired and depressed, but not in agony,” one says. He proceeds by ruling out other primary headache disorders, such as migraine, before diagnosing cluster headaches. A detailed patient history is crucial: on which part of the head do signs appear? For how long? What season? Are there triggers, such as alcohol? Specific features such as tearing, drooping eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be referred to dedicated clinics. But a lot of first go to emergency rooms or are given unsuitable treatments.

A charity trustee, 78, has experienced the condition for the majority of her adult life, although she hasn't had an attack since recent years. When she was in her twenties, she had her molars pulled because dentists misinterpreted her pain. She thinks the dental profession still need greater awareness. When another patient sought help from a charity, it was Chapman who replied. I remember calling a support line during an attack in early 2021; a calm advisor guided me through oxygen therapy and medication until the attack passed.

Official guidelines on treatment advise that sufferers are offered high-dose oxygen therapy and/or a specific medication delivered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic choices include verapamil, which apparently soothes the bouts of some people.

But consultant specialists argue the guidance need revising to reflect a more defined clinical process and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The duration of the cycle dictates the treatment.” Brief cycles with occasional attacks are managed with abortive treatment only. Longer or more severe bouts require preventative medications such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the area of the skull where the pain is that decreases nerve activity.

The official guidance need revising to reflect a