Excruciating Suffering: A Personal Fight With the Puzzling Suffering of Cluster Headache Syndrome
It began on a overcast weekday in the morning in September 2016. I worked as a teacher, trying to settle a new class, when a sharp sensation erupted behind my one eye. This was followed by rapid shocks, reminiscent of electric shocks. As the school day came and went, the pain subsided and then returned with increased force. Four times that day I handed over a teaching assistant with worksheets and hurried to the staff bathroom to douse my face with cold water. I took aspirin, but the pain remained unrelenting.
The headaches returned frequently that autumn, and again in the spring, soon establishing an annual cycle. The autumn months were the worst, then the late winter. I could anticipate the routine: aura in the shower, early twinges on the train, full-blown pain in class by 9.30am. In 2019, a GP eventually referred me to a specialist and I was given a diagnosis with cluster headache disorder.
This condition typically begin with intense discomfort behind a single eye that lasts for three hours.
About one in 1,000 people suffer by the condition, and males are more often affected. Attacks usually begin with sudden, excruciating agony focused on one eye that peaks within minutes and lasts for up to three hours. Episodes come in clusters, every day or several times a day, and are accompanied by tearing eyes, sagging eyelids or face sweating. I have the episodic form, which arrives in seasonal cycles; others have continuous cluster headaches, defined by the absence of long symptom-free periods.
What unites patients is the intensity. One study scored the sensation at 9.7 out of 10, higher than broken bones or other conditions. A separate discovered 64% of cluster headache patients reported thoughts of self-harm during attacks; the figure dropped to 4% when they were not in pain.
Val Hobbs, in her seventies, a chronic sufferer from Wales, isn't surprised. Her episodes began when she was a toddler. “I would throw myself on the ground and hit my head. That was put down to being spoiled,” she says. Her condition worsened through her youth. Alcohol in her teens, like many triggers, made things worse. After having alcohol at her graduation party, she recalls barely being able to see on the transport home.
Her family often interpreted her attacks as drunken episodes. Understanding finally came from her parent and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after relocating, but often concealed her illness. She was fired from one job, in part due to absences during attacks. Her breakthrough diagnosis came in the early 2000s at a specialist hospital.
Still, the inability to organize daily activities around unpredictable attacks took its toll. She particularly hated 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 steals from you of the small freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a facility.
Headaches have been documented throughout the ages. “The earliest description of headache comes by way of the ancient civilizations in 4000BC,” write authors in a publication on the subject. They linked the disease to an evil spirit who attacked his sufferers' heads.
Ancient healing texts suggest unusual treatments for what some observers would classify as a headache disorder. In the medieval times, severe headache was recognised as a distinct disorder, with therapies including herbal concoctions to other, more superstitious remedies.
It was a European doctor who provided the first comprehensive description of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very intense headache occurring and vanishing each day at fixed hours”.
The disorder were only officially classified by international medical societies 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 that delivers blood to the head. Leading specialists in diagnosing the disorder explain this.
In 1998, researchers published the results of a study for which they had triggered attacks in patients and monitored the attacks in a imaging machine. The results, featured in a major medical publication, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they felt better.
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 had four operations before finally being correctly identified in recently, after a doctor researched his complaints.
Specialists say delays in diagnosing and managing happen because patients are rarely seen mid-attack. “You're tired and depressed, but not in severe pain,” a doctor says. He proceeds by eliminating other primary headache disorders, such as migraine, before diagnosing the disorder. A detailed history is crucial: on which side do symptoms appear? For how long? What season? Are there precipitating factors, such as certain foods? Certain features such as tearing, sagging eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent to specialist clinics. But many first arrive to emergency rooms or are given inadequate treatments.
A charity trustee, in her late seventies, has suffered from the condition for most of her life, although she has been free from an episode since recent years. When she was in her twenties, she had her molars pulled because dental professionals misunderstood her pain. She thinks the dental profession still need much more awareness. When a sufferer sought help from a charity, it was Chapman who responded. I remember calling a helpline during an bout in early 2021; a calm advisor guided them through oxygen therapy and drugs until the episode eased.
National guidelines on treatment recommend that sufferers are offered high-flow oxygen and/or a specific drug delivered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which apparently soothes the bouts of well-known people.
But consultant specialists believe the guidance need revising to reflect a clearer clinical pathway and help GPs avoid incorrect prescriptions. For periodic patients, timing is everything: “The length of the cycle dictates the treatment.” Brief cycles with infrequent attacks are managed with abortive treatment alone. More prolonged or more severe bouts require preventative medications such as verapamil, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a bout – an injection into the area of the skull where the pain is that decreases nerve activity.
The official guidelines need updating to reflect a
