Cluster Headache Diagnosis Today

In part 1 of an interview with Bob Wold of Clusterbusters, we learned how long it took for Bob to receive his cluster diagnosis. We wondered what it was like for people receiving a cluster headache diagnosis 40 years late rand if there has been any improvement.

Would you say there’s any improvement for people who are getting diagnosed with cluster today?

It’s getting a little better and hopefully, some of the stuff we’ve been doing is making it better - bringing awareness to the condition, all the advocacy work, and teaching doctors about it. Forty years ago most doctors hadn’t even heard of the term. Even neurologists would be lucky if they ever saw 1-2 cluster patients in their entire career so trying to find someone who was experienced was difficult. I’ve talked to a lot of people who waited 6-8 years before getting a proper diagnosis. Some people are getting diagnosed with cluster headache right away by a neurologist. But four years is common and the midrange for time to diagnosis.

So if a patient makes it to a neurologist they could get the diagnosis right away?

I see people all the time who say they think they have clusters, they’ve been to 8 doctors and been ignored for years, and they finally get a referral to a neurologist. They think they’re going to see an expert who will know how to treat them. Once again, the odds are they’re going to go to a neurologist who has never seen a cluster headache patient in their life.

Are primary care doctors capable of spotting cluster?

If you’re lucky enough have one who has had patients who have had cluster before they may recognize it. For the most part, neurologists are diagnosing cluster headache. Dr. Peter Goadsby found that 40% of people with cluster headaches go to a dentist and have dental work done before getting diagnosed with cluster headache.

Are dentists being educated?

There should be. Dental conferences are huge. These conferences are number 1 on my list - give me a microphone to educate them. I just want to tell them don’t start pulling teeth, learn about cluster headaches.

Why are people still being misdiagnosed?

We’re slowly getting things turned around. Part of the problem when people finally get diagnosed with cluster headaches, they don’t want to talk about it. They don’t want their job, family, or friends to know. The first thing you do during an attack is leave the room so no one sees us going through this pain. We hide it from those we love and from our jobs. Even when the internet came around, people don’t even really put it out there on social media.

Cluster headache is misunderstood and very difficult to explain to people. “No it’s not a headache, they’re different from migraine, it’s not something I can work through.” The people with the disease were keeping it quiet. Trying to get people to talk about is one of the largest challenges. There are sports figures and celebrities who have it but don’t want to advertise it.

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Please stay tuned for part 3, where Bob discusses what it was like being prescribed over 70 different medications for cluster headache over two decades.