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Addressing diagnostic delays and misdiagnosis in patients with cluster headache

Mona Nada • 25 Apr 2025

Mona Nada, MBBCh, MD, from Cairo University, Cairo, Egypt, discusses the diagnosis of cluster headache, highlighting that delays and misdiagnosis remain significant issues. She emphasizes the importance of recognizing symptoms of cluster headache and a rhythmic circadian rhythm of recurrence. Dr Nada also highlights the need to rule out secondary causes and the importance of using imaging when diagnosing cluster headaches. This interview was recorded via an online conference call with The Video Journal of Neurology (VJNeurology).

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Transcript

Well, actually, we had this diagnostic delay, and this is a great problem that usually the patients with cluster headache, they will go for the ophthalmologist having this unilateral, strictly unilateral headache, which is very severe with autonomic features like nasal lacrimation, nasal congestion, rhinorrhea, and ptosis. So they usually visit the ophthalmologist first or the ENT and the misdiagnosis actually causes this diagnostic delay and diagnostic inertia...

Well, actually, we had this diagnostic delay, and this is a great problem that usually the patients with cluster headache, they will go for the ophthalmologist having this unilateral, strictly unilateral headache, which is very severe with autonomic features like nasal lacrimation, nasal congestion, rhinorrhea, and ptosis. So they usually visit the ophthalmologist first or the ENT and the misdiagnosis actually causes this diagnostic delay and diagnostic inertia. So I advise people to be very well aware of the classic picture of the cluster headache which includes the strictly unilateral headache that lasts a maximum of three hours which differentiates this headache from the migraine which may last for three days and actually it has this rhythmic circadian rhythm of recurrence that it can happen each day twice or three times per day. The knowledge of the diagnostic criteria will just fasten the diagnosis and will shorten the disability and the suffering of the patients. Also, differentiating this headache from migraine, which is usually misdiagnosed, the patients are usually misdiagnosed as having the migraine because it’s common, it’s very prevalent, it’s very well known, and it’s actually completely different from the cluster headache. The other point is when we are facing patients with a primary headache disorder, as per the guidelines, we have to do imaging when we suspect secondary headaches, and this is very important in cluster headache TACs. So if we have this patient, the male patient in the 20 to 40 years old with the strictly unilateral headache and the autonomic features on the same side of the headache, we have to do imaging, specifically MRI. And sometimes we can use also the functional imaging. Because if we go to the etiology, usually you have this evidence that the hypothalamus, especially the posterior part of the hypothalamus, is involved in this type of headache. So we have to rule out the secondary causes and the affection of the pituitary or the hypothalamus as a secondary cause of a primary headache. The neurotransmitters play a role in the pathogenesis of the cluster headache. And that’s why when we are questioning a patient with unilateral headache, we have to ask, when does this happen in the day? If this has a circadian rhythm? And usually this is the case in the cluster headache. The patient at the biological clock that they are having this severe attacks, this devastating headache, usually at 2 to 3 a.m. And this is related also to the hypothalamus, to the clinical features of any type of headache, especially the cluster headache and TACs. It’s very important to listen well to the patient and ask all the questions related to headache. So we can, by history, differentiate TACs, especially cluster headache from the other types and from the secondary types.

 

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