Cluster headache sufferers face years of delay in diagnosis, study shows
Research shows misdiagnosis of ‘suicide headaches’ as migraines is delaying treatment for patients
Cluster headache, the medical term for the condition, is as common as but much less well known than other neurological disorders such as multiple sclerosis or Parkinson’s disease. One in 1,000 people have it. It involves excruciating pain that can last for anything between 15 minutes and three hours. It is known as “suicide headache” because 64% of sufferers think about taking their own life.
A study published in the British Journal of General Practice paints a picture of patients forced to wait a long time to have their cluster headache correctly identified and begin treatment.“It [the delay] used to be nine-plus years, although still it is around three to four years on average, but for some it may be 20-plus years,” said Dr Fayyaz Ahmed, a consultant neurologist at Hull University teaching hospital and a co-author of the paper.
Prof Lisa Dikomitis, a medical sociologist at Keele University who led the research, added: “For some patients we interviewed, it was many years. It often depends on the GP and how quickly the patient can be referred. Many of the patients we interviewed thought they had migraines.”
A cluster headache attack differs from a flare-up of migraine because it cannot be banished by taking a painkiller the way a migraine can. Patients are treated with oxygen instead. Similarly, someone with cluster headache is usually very restless during the incident, whereas a migraine sufferer will lie down motionless in a dark room.
Family doctors often misdiagnose cluster headache as many other ailments such as sinusitis, dental problems, tension-related headaches and eyesight trouble. Sufferers end up unnecessarily having teeth extracted or undergoing a sinus washout as a result of misdiagnosis.
“Cluster headache is often poorly recognised in primary care. [Our] study shows that patients regularly face long delays before receiving a correct diagnosis. Misdiagnosis, and consequently mismanagement, is common,” said Dikomitis.Their findings come from interviewing eight GPs and eight neurologists working in the NHS in the north of England. “Clinicians acknowledged delays in diagnosis, misdiagnosis and mismanagement of cluster headache,” according to the paper.
The condition involves such severe and debilitating pain that most sufferers also experience serious psychiatric illnesses, such as depression, self-harm and suicidal thoughts during the attack, they found. A few have even been sectioned under the Mental Health Act because the headache made them psychotic. Around five people a year in the UK with the disorder kill themselves.
Sufferers often have trouble sleeping and holding down a steady job, because they are frequently unwell and suffer from fatigue and sometimes get irritated with colleagues and bosses. Two to three times more men than women suffer from it, though the figure used to be even more predominantly male.
Despite the considerable human cost, however, GPs refer only 2% to 3% of people who come to see them about cluster headache to specialist neurology services at hospitals. That is partly because they have wrongly identified it as something else, Dikomitis and colleagues found.
An NHS England spokesperson said: “NHS England has developed a specialist support hotline to help GPs make informed clinical decisions for patients suffering with headache-like symptoms, while for more severe cases, the NHS is offering a handheld gadget that relieves the suffering of cluster headaches.”
• In the UK and Irish Republic, contact Samaritans on 116 123, or email email@example.com.• In the US, the National Suicide Prevention Lifeline is 1-800-273-8255.• In Australia, the crisis support service Lifeline is 13 11 14.
• Other international suicide helplines can be found at www.befrienders.org Read more: The Guardian »
As a migraine sufferer, I know that headaches are fairly taken seriously by the medical profession!!😠 Also Trigeminal Neuralgia mixed with Cluster Headache!!!
Coronavirus: Face masks and social distancing do work, but are not foolproof says studyThe report analysed data on COVID-19 prevention measures from 172 studies in 16 countries. They work Nothing is foolproof but not to use them is far more foolish, so reduce the odds Please post a picture of people wearing their face masks properly. Both of these lovely people do not have their noses covered. This renders the face mask pointless.
Video shows milk being poured on the face of a child 'pepper-sprayed' at protestHORRIFYING footage shows milk being poured on the face of a child allegedly pepper-sprayed by police at a protest in Seattle. Recent days have seen riot cops deployed amid widespread unrest over th… Now nothing sounds as stupid as going protests with such an innocent child. This is child abuse. Staged
Silent witness: unseen Buster Keaton sketches underline his comic geniusTwo previously unpublished scripts show how the Great Stone Face meticulously mapped out his stunts and jokes thehighsign
Shirley Ballas: 'I am 99 percent sure' Strictly judge confirms show 'return' this yearSHIRLEY BALLAS - Strictly Come Dancing's head judge - has confessed how she is 'sure' the BBC competition will return late this year in 'one form or another'.
Are you having more headaches in lockdown? This could be whyFeel like you’re experiencing more headaches than usual during lockdown? You’re not alone.
Full September return unlikely, with schools warning: ‘it’s not business as usual’Pupils face patchy provision and short-notice closures as some year groups prepare to return from lockdown That’s right. You guys are still doing the pandemic. Across the pond, we’ve moved on to the race war. So many sources to learn from online at home. Public school is a waste. It corrupts kids minds and makes them another cog in the machine. No individualism exists after going through the mental numbing that public schools are so good at administering. If they’re not back by September then someone is taking the pi**.