Full-Blown Pain: My Struggle With the Enigmatic Pain of Cluster Headache Syndrome
It began on a gloomy Monday in the morning in September 2016. I was working as a educator, attempting to manage a new class, when a sudden pain erupted behind my right eye. It was followed by quick jolts, like electric shocks. As the school day progressed, the pain eased and then returned with greater intensity. Four times that day I left a colleague with worksheets and hurried to the school bathroom to soak my face with cold water. I tried paracetamol, but the pain remained unrelenting.
The headaches appeared frequently that fall, and again in spring, soon establishing an annual cycle. The autumn months were the most severe, then February and March. I could anticipate the routine: a warning sensation in the morning, early twinges on the commute, full-blown pain in class by mid-morning. In 2019, a doctor eventually referred me to a neurologist and I was diagnosed with cluster headaches.
This condition often start with severe discomfort around one eye that lasts for several hours.
Approximately one in 1,000 individuals are affected by the condition, and men are more often diagnosed. Cluster headaches usually begin with sudden, severe agony around one eye that peaks within minutes and lasts for as long as three hours. Attacks occur in cycles, daily or several times a day, and are associated with tearing eyes, drooping eyelids or face sweating. I have the episodic form, which occurs in seasonal cycles; others have chronic cluster headaches, characterized by the lack of long pain-free periods.
What unites sufferers is the intensity. One research paper rated the pain at 9.7 out of 10, more severe than bone fractures or other conditions. A separate found a significant percentage of cluster patients reported suicidal thoughts during bouts; the figure fell to four percent when they were pain-free.
Val Hobbs, in her seventies, a long-term sufferer from Wales, finds this understandable. Her episodes started when she was a toddler. “I would throw myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through childhood. Alcohol in her adolescence, like many causes, made things worse. After drinking alcohol at her school leaving party, she remembers barely being able to see on the bus home.
Her relatives often interpreted her episodes as drunken episodes. Understanding eventually came from her father and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after relocating, but often hid her illness. She was fired from one job, in part due to time off during attacks. Her definitive identification came in the early 2000s at a specialist neurology center.
Still, the inability to organize life around unpredictable pain 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 most severe episodes. “It steals from you of the small freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a facility.
Headaches have been described throughout history. “The earliest account of headache comes by way of the Mesopotamians in antiquity,” write experts in a book on the subject. They attributed the disease to an evil entity who afflicted his sufferers' heads.
Historical healing texts suggest bizarre treatments for what modern observers would describe as a migraine. In the medieval times, migraine was recognised as a separate disorder, with treatments ranging from herbal concoctions to other, more folk remedies.
It was a Dutch doctor who provided the initial comprehensive account of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very severe headache happening and disappearing daily at specific hours”.
Cluster headaches were only formally classified by international medical committees in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a key blood vessel which supplies blood to the head. Prominent specialists in diagnosing the condition note this.
In 1998, researchers released the results of a study for which they had induced attacks in patients and monitored the attacks in a imaging machine. The results, published in a prominent medical publication, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.
Despite such advances, diagnosis remains slow. Jamie Charteris's symptoms began in 1986 and felt like “a balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he underwent four operations before eventually being correctly identified in recently, after a doctor looked up his symptoms.
Neurologists say delays in diagnosing and managing 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 detailed history is crucial: on which part of the head do signs appear? For how long? What season? Are there triggers, such as alcohol? Specific characteristics such as redness, drooping eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be referred to dedicated centers. But many first go to A&E or are given unsuitable treatments.
A charity trustee, 78, has experienced the condition for most of her adult life, although she hasn't had an attack since recent years. When she was in her twenties, she had her teeth pulled because dentists misunderstood her symptoms. She thinks dentists still need much more awareness. When another patient sought help from a charity, it was she who responded. I remember calling a helpline during an bout in early 2021; a calm advisor guided me through oxygen therapy and medication until the episode eased.
Official guidelines on management recommend that sufferers are offered high-dose oxygen and/or a anti-migraine drug administered by nasal spray. No oral painkillers or opioids should be used. Prophylactic choices include verapamil, which reportedly soothes the bouts of some people.
But leading specialists argue the official guidelines need revising to reflect a more defined clinical pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is critical: “The duration of the cycle dictates the approach.” Brief bouts with occasional attacks are handled with acute therapy alone. More prolonged or more intense bouts require preventives such as verapamil, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the skull where the pain is that reduces nerve activity.
The national guidelines need revising to reflect a
