Sufferers of ‘worst pain’ imaginable waiting years for diagnosis

Anna Samecki

2/02/2022 4:49:03 PM

Australian experts warn that sufferers of cluster headache face significant delays in diagnosis despite available treatment options.

Person with cluster headache.
Cluster headache accounts for 20% of unilateral headaches and the pain can be debilitating.

Headaches are a common presentation to general practice.
But for some patients, the pain of delayed diagnosis can be just as debilitating as the headache itself.
This is especially true for people who suffer cluster headache, with experts warning they can face up to an eight year wait for a proper diagnosis.
Delays in diagnosis can also compound the morbidity of the disease and leave sufferers in the ‘worst pain’ imaginable, despite available and effective treatments, which is why neurologists from Melbourne’s Alfred Hospital have published an article in Australian Prescriber aimed at improving the recognition and management of cluster headache.
They write that it is a type of trigeminal autonomic cephalalgia that accounts for 20% of unilateral (‘side-locked’) headache presentations. Diagnosis is based almost entirely on clinical history.
‘A person with a cluster headache has attacks of severe pain on one side of their head that last from 15 minutes to three hours, up to eight times a day,’ lead author Dr Jason Ray said.
‘This can go on from a week to a year, or longer, sometimes with gaps of several months between attacks.’
GP and NPS MedicineWise medical advisor, Dr Caroline West, understands the frustration of delayed diagnosis and says sometimes patients will spend years going around in circles, especially if there are long gaps between attacks.
‘What I sometimes see as a GP, is that patients will get a series of headaches which they may eventually get on top of and then they’ll go away without being optimally managed,’ she told newsGP.
As such, Dr West says diagnosis and management requires careful attention to detail.
Cluster headache is typically associated with ipsilateral autonomic features including conjunctival injection, lacrimation, rhinorrhoea, eyelid oedema, sweating, miosis or ptosis according to the authors of the article.
Smoking is a well-known risk factor, as is family history, with first-degree relatives having an 18 times higher risk of the disease.
In addition, Dr West highlights the importance of asking about mental wellbeing.
‘Cluster headaches have to be one of the most excruciating, terrible headaches to endure,’ she said.
‘Many patients suffer so severely that it can also affect mental health and mood, and it’s not uncommon for people to just feel as though they’re at their wits end.’
As part of the diagnostic work up, the article authors advise that all patients presenting with cluster headache have an MRI of the brain, including the pituitary region, to exclude a sensory cause (such as a neoplasm) mimicking cluster headache.
GPs should keep in mind that only unexplained seizures and chronic headache with suspected intracranial pathology attract a Medicare rebate for GP-initiated MRI referrals of the head.
Management can be divided into acute abortive and preventive measures, with an option for bridging therapy between them.
Among the acute abortive options are triptans, high-flow oxygen and non-invasive nerve stimulation, while preventive measures include verapamil, lithium, galcanezumab, topiramate and melatonin.
‘Triptans can bring fast relief,’ Dr Ray said. ‘They are given either as a nose spray or an injection.
‘Breathing in oxygen through a well-fitted mask is another option for non-smokers.’
He says that verapamil can reduce the number of attacks over time, whereas prednisolone can be used as a bridging strategy while awaiting verapamil to ‘kick in’.
The authors of the article also encourage early specialist referral and co-management if there is any diagnostic uncertainty.
‘People are often living with cluster headache for years before they get diagnosed and start treatment,’ Dr Ray said.
There are effective treatments out there, so it is important [for patients] to seek help and no longer suffer in silence.’
Dr West agrees.
‘It’s really important to remind ourselves of just how debilitating and terrible these headaches can be,’ she said.
‘That’s why optimal, effective and timely management of them is so important.’
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