Unbearable Suffering: A Personal Struggle With the Enigmatic Suffering of Cluster Headache Syndrome

It was a dreary Monday morning in September 2016. I worked as a teacher, trying to settle a new class, when a sudden sensation erupted behind my one eye. This was followed by rapid shocks, similar to lightning bolts. As the school day came and went, the pain subsided and then returned with greater intensity. Multiple times that day I left a teaching assistant with activities and hurried to the staff bathroom to soak my face with cold water. I tried aspirin, but the agony remained unrelenting.

The headaches returned frequently that autumn, and again in the spring, soon establishing an yearly cycle. The autumn months were the worst, then February and March. I could predict the pattern: aura in the shower, early pangs on the commute, full-on agony in the classroom by mid-morning. In 2019, a doctor finally sent me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches often start with severe discomfort behind a single eye that lasts up to several hours.

About one in 1,000 individuals suffer by the disorder, and men are more often affected. Cluster headaches typically start with abrupt, excruciating agony around a single eye that peaks within minutes and lasts for up to three hours. Attacks occur in cycles, every day or several times a day, and are accompanied by tearing eyes, sagging eyelids or face perspiration. I have an episodic type, which arrives in periodic bouts; some patients have chronic cluster headaches, defined by the absence of extended pain-free periods.

What connects patients is the intensity. One research paper rated the pain at 9.7 out of 10, higher than bone fractures or other conditions. A separate discovered 64% of cluster patients experienced thoughts of self-harm during attacks; the number fell to 4% when they were pain-free.

Val Hobbs, 74, a long-term patient from Wales, isn't surprised. Her attacks started when she was a toddler. “I would hurl myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through childhood. Drinking in her adolescence, similar to several causes, made things worse. After having sherry at her school leaving party, she remembers barely being able to see on the transport home.

Her family often interpreted her episodes as drunken episodes. Understanding finally came from her father and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after moving, but often hid her illness. She was dismissed from one job, in part due to absences during episodes. Her definitive diagnosis came in 2002 at a national neurology center.

Nevertheless, the failure to organize daily activities around erratic attacks took its toll. She particularly disliked being unable to plan social events, 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 robs you of the small liberties we don't value until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a portable toilet.

Headaches have been documented throughout the ages. “The earliest account of headache comes by way of the Mesopotamians in 4000BC,” write experts in a publication on the topic. They linked the disease to an malevolent entity who afflicted his victims' heads.

Ancient medical texts propose bizarre treatments for what modern observers would classify as a headache disorder. In the middle ages, severe headache was identified as a separate disorder, with therapies including herbal concoctions to other, more folk cures.

It was a European physician who provided the first detailed account of a cluster-type attack. In his writings, he describes a patient “afflicted with a very intense headache occurring and disappearing daily at specific hours”.

Cluster headaches were only officially classified by international headache societies in the late 1980s. 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 condition note this.

In the late 1990s, researchers published the findings of a study for which they had triggered cluster headaches in patients and monitored the attacks in a imaging machine. The results, featured in a major medical publication, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

Despite such advances, diagnosis remains slow. One man's symptoms began in 1986 and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had sinus problems; he had multiple operations before finally being correctly identified in recently, after a doctor looked up his complaints.

Neurologists say wait times in diagnosis and managing occur because patients are seldom seen mid-attack. “You're tired and low, but not in agony,” one says. He works by eliminating other primary head pain disorders, such as tension-type headache, before confirming the disorder. A detailed history is crucial: on which part of the head do signs occur? For how much time? What season? Are there precipitating factors, such as certain foods? Certain features such as tearing, drooping eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be referred to dedicated centers. But a lot of first arrive to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, 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 20s, she had her teeth pulled because dental professionals misunderstood her pain. She thinks dentists still need greater education. When another patient sought help from a support group, it was Chapman who responded. The author recalls calling a helpline during an bout in early 2021; a reassuring advisor guided me through oxygen therapy and medication until the attack eased.

Official guidance on management recommend that sufferers are offered high-dose oxygen and/or a anti-migraine drug delivered by nasal spray. No tablets or strong analgesics should be used. Preventive choices include a blood pressure medication, which reportedly soothes the attacks of well-known individuals.

But leading specialists believe the official guidelines need updating to reflect a more defined treatment process and help general practitioners avoid misprescribing. For periodic patients, the treatment window is critical: “The duration of the bout determines the approach.” Brief bouts with occasional attacks are handled with abortive treatment alone. Longer or more intense periods require preventative medications such as verapamil, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the area of the head where the discomfort is that reduces nerve signals.

The official guidance need updating to reflect a