Unbearable Suffering: My Battle With the Enigmatic Suffering of Cluster Headache Syndrome
It was a overcast weekday in the morning in September 2016. I worked as a educator, trying to settle a new class, when a intense sensation sprang behind my one eye. It was followed by rapid jolts, similar to electric shocks. As each class progressed, the discomfort subsided and then returned with greater intensity. Four times that day I left a colleague with worksheets and ran to the school bathroom to douse my face with cool water. I tried ibuprofen, but the agony remained unbearable.
The headaches returned frequently that autumn, and again in spring, soon forming an yearly cycle. September and October 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 the classroom by 9.30am. In 2019, a GP finally referred me to a specialist and I was diagnosed with cluster headache disorder.
Cluster headaches typically begin with intense pain around one eye that lasts up to several hours.
Approximately one in 1,000 individuals suffer by the condition, and males are more often diagnosed. Attacks usually start with abrupt, excruciating pain around one eye that peaks within minutes and lasts for as long as three hours. Attacks occur in cycles, every day or several times a day, and are accompanied by tearing eyes, sagging eyelids or facial sweating. I have an episodic type, which arrives in periodic cycles; some patients have continuous cluster headaches, defined by the absence of extended pain-free periods.
What unites sufferers is the intensity. One study scored the sensation at 9.7 out of 10, more severe than bone fractures or pancreatitis. Another found 64% of cluster headache patients experienced suicidal thoughts during attacks; the figure fell to four percent when they were not in pain.
Val Hobbs, in her seventies, a long-term sufferer from Pembrokeshire, finds this understandable. Her episodes began 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. Drinking in her teens, similar to many causes, made things more intense. After having sherry at her graduation party, she remembers barely being able to see on the transport home.
Her family often interpreted her episodes as drunken behavior. Understanding eventually came from her father and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after relocating, but often concealed her illness. She was dismissed from one job, in part due to time off during attacks. Her breakthrough identification came in 2002 at a national hospital.
Still, the inability to plan daily activities around unpredictable pain took its toll. She especially disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her family during the incapacitation caused by the most severe episodes. “It robs you of the simple freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a facility.
Headaches have been documented across the ages. “The earliest description of headache comes by way of the ancient civilizations in antiquity,” write authors in a book on the subject. They linked the ailment to an evil entity who attacked his sufferers' heads.
Ancient medical texts propose bizarre treatments for what modern observers would classify as a headache disorder. In the medieval times, severe headache was recognised as a distinct condition, with treatments including bloodletting to other, more folk remedies.
It was a European physician who provided the initial comprehensive account of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very severe headache occurring and disappearing daily at fixed hours”.
The disorder were only officially classified by global medical committees in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a key blood vessel which supplies blood to the head. Prominent specialists in treating the disorder note this.
In the late 1990s, researchers published the results of a study for which they had induced attacks in patients and observed the attacks in a brain scanner. The results, featured 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 reduction when they recovered.
Despite such progress, diagnosis remains delayed. Jamie Charteris's symptoms started in 1986 and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had sinus problems; he underwent four surgeries before finally being correctly identified in recently, after a doctor researched his complaints.
Specialists say wait times in diagnosing and treatment happen because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in agony,” one says. He works by ruling out other common head pain conditions, such as migraine, before confirming the disorder. A detailed history is crucial: on which side do symptoms appear? For how much time? What season? Are there precipitating factors, such as certain foods? Certain features such as redness, sagging eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be sent to specialist clinics. But many first arrive to A&E or are given inadequate treatments.
A charity trustee, in her late seventies, has suffered from cluster headaches for most of her adult life, although she hasn't had an attack since 2016. When she was in her twenties, she had her molars pulled because dental professionals misinterpreted her pain. She thinks dentists still need greater education. When another patient sought help from a support group, it was she who replied. I remember calling a support line during an attack in early 2021; a calm volunteer guided me through oxygen therapy and medication until the episode eased.
Official guidance on management recommend that sufferers are offered high-flow oxygen and/or a specific 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 some people.
But leading specialists argue the guidance need updating to reflect a clearer treatment process and help GPs avoid misprescribing. For episodic patients, the treatment window is everything: “The length of the cycle dictates the treatment.” Brief bouts with infrequent episodes are handled with abortive therapy only. More prolonged or more intense bouts require preventives such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the side of the head where the pain is that decreases nerve signals.
The official guidelines need updating to reflect a
