Excruciating Suffering: My Battle Against the Enigmatic Pain of Cluster Headaches
It began on a dreary weekday in the morning in September 2016. I was working as a teacher, attempting to manage a new group of students, when a intense pain sprang behind my right eye. It was followed by quick shocks, similar to electric shocks. As each class progressed, the discomfort eased and then came back with greater force. Multiple times that day I handed over a teaching assistant with worksheets and hurried to the school bathroom to soak my face with cold water. I tried ibuprofen, but the pain remained unbearable.
The headaches appeared frequently that fall, and once more in spring, soon establishing an annual cycle. September and October were the most severe, then February and March. I could anticipate the pattern: aura in the shower, early twinges on the commute, full-blown pain in the classroom by 9.30am. In 2019, a GP eventually referred me to a specialist and I was diagnosed with cluster headaches.
Cluster headaches typically begin with intense pain behind a single eye that persists up to several hours.
About 1 in 1000 people suffer by the condition, and men are more frequently diagnosed. Attacks typically begin with sudden, severe agony around a single eye that peaks within a short time and continues for up to three hours. Attacks come in clusters, every day or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or facial perspiration. I have an episodic type, which arrives in seasonal cycles; others have chronic attacks, characterized by the absence of extended pain-free periods.
What connects sufferers is the severity. One research paper scored the sensation at 9.7 out of 10, higher than bone fractures or other conditions. A separate found 64% of cluster headache patients reported suicidal thoughts during attacks; the figure dropped to four percent when they were pain-free.
One patient, 74, a chronic sufferer from Pembrokeshire, finds this understandable. Her episodes started when she was a toddler. “I would throw myself on the ground and bang my head. That was put down to being spoiled,” she says. Her condition worsened through her youth. Alcohol in her adolescence, similar to several triggers, made things more intense. After drinking alcohol at her school leaving party, she remembers barely being able to see on the transport home.
Her family often mistook her episodes as drunken episodes. Understanding finally came from her parent and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after moving, but often concealed her condition. She was dismissed from one job, in part due to time off during episodes. Her breakthrough identification came in 2002 at a national neurology center.
Nevertheless, the failure to organize life around unpredictable pain took its toll. She particularly hated being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a portable toilet.
Headaches have been documented across the ages. “The earliest description of headache originates from the ancient civilizations in 4000BC,” write experts in a publication on the subject. They linked the disease to an evil spirit who afflicted his sufferers' heads.
Historical medical texts suggest unusual treatments for what modern observers would describe as a migraine. In the medieval times, migraine was identified as a separate condition, with therapies ranging from herbal concoctions to other, more folk cures.
It was a Dutch doctor who provided the initial comprehensive description of a cluster-type attack. In his writings, he describes a patient “suffering with a very severe headache occurring and disappearing daily at specific hours”.
The disorder were only officially classified by international medical societies in 1988. From the 1960s to the 1990s, they were believed to be caused by a problem with a key blood vessel that supplies blood to the brain. Prominent specialists in treating the disorder explain this.
In the late 1990s, researchers released the findings of a research project for which they had triggered attacks in patients and observed the episodes in a brain scanner. The data, featured in a prominent journal, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.
In spite of such progress, diagnosis remains slow. One man's attacks began in 1986 and felt like “a balloon being blown up behind my left eye”. GPs thought he had sinus problems; he underwent multiple operations before finally being diagnosed in 2014, after a doctor looked up his symptoms.
Neurologists say wait times in diagnosing and managing happen because patients are seldom seen during an episode. “You're exhausted and depressed, but not in severe pain,” one says. He works by ruling out other common headache disorders, such as migraine, before diagnosing cluster headaches. A thorough patient history is essential: on which side do symptoms occur? For how much time? What time of year? Are there triggers, such as alcohol? Certain characteristics such as redness, sagging eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be sent to specialist clinics. But a lot of first go to A&E or are given inadequate therapies.
Dorothy Chapman, 78, has suffered from cluster headaches for the majority of her adult life, although she has been free from an attack since 2016. When she was in her 20s, she had her teeth 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 she who replied. I remember calling a helpline during an bout in 2021; a reassuring advisor guided them through oxygen therapy and drugs until the episode passed.
National guidance on treatment advise that patients are offered high-dose oxygen and/or a anti-migraine medication administered by injection. No oral painkillers or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which apparently helps manage the bouts of some individuals.
But consultant specialists argue the official guidelines need updating to reflect a clearer clinical process and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The duration of the cycle determines the approach.” Brief cycles with occasional attacks are managed with acute therapy only. Longer or more intense periods require preventative medications such as certain drugs, sometimes combined with steroids. Many patients also receive a nerve block injection during a bout – an injection into the side of the head where the discomfort is that reduces nerve activity.
The official guidelines need revising to reflect a
