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ARTe Cluster - Preface - Prefazione

Prof. Dr. med. Arne May

Leiter der Kopfschmerzambulanz des UKE und
stellv. Direktor des Instituts für Systemische Neurowissenschaften
Universitätsklinikum Hamburg-Eppendorf
1. Vizepräsident Deutsche Migräne- und Kopfschmerzgesellschaft DMKG

Life…..

While looking at these pictures and works of art my first emotional reaction was awe and amazement. And looking again and then again – it is not one single painting that takes my breath but the different expressions of the same theme. A theme of unbelievable pain and affliction, of torture and the aftermath of terror: horror, isolation and fear. A theme I am now working on since 20 years.

Cluster headache sufferers generally say that no-one can understand how exactly such a headache attack would feel like; that the pain is truly indescribable to someone not suffering the same headache attacks. When we measure pain we usually use a numerical rating scale anchored to 0 = no pain and 10 = the worst pain in the world, with no augmentation possible or even thinkable. Cluster patients nearly always rank this pain as a ten. But they would argue that this is still just a number and that outsiders will not be able to realize how it really is. I have had patients who said I should not try to understand them.

What this exhibition achieves is to give people who have the odd headache or tooth pain an idea what cluster headache means. And the amazing thing is that it allows an emotional imagination not just of the excruciating pain but of all the consequences coming with the fact to suffering through several attacks per day, sometimes for weeks, sometimes for months of even years. Perhaps just one picture would still not describe more than words could achieve, but seeing the exhibition as a whole, to let all the pictures think in and let them talk to us about things we cannot put into words, gives us perhaps a glimpse what cluster headache is.

A lot of cluster patient sufferers tell me that one of the most depressing experiences was the fact that no-one believed them, that doctors were not interested and that it took literally years before the right diagnosis was delivered. In 1990, it was still 12 years on average for each patient until the proper diagnosis was made. Nowadays it is still 2 years on average but what a long way we have come. I personally think this (intermediate) success has 2 reasons: Firstly, we understand the biological reasons for this disease better and doctors feel more on ease to diagnose something they understand. This achievement is clearly and without doubt due to the patients who allowed there attacks to be studied. It is amazing just how many cluster patients are willing to help selflessly. And secondly, because of the internet allowing self-help groups to communicate. This exhibition is a fine combination of these two factors, resulting in a better understanding of the suffering and hence - acceptance.

This exhibition again, just like hundreds of individual tales of patients over the years motivate me to carry on, to never give up in our ultimate quest to understand and finally defeat this headache. When we put so much money into migraine research because there is so much money to make, we should do the same for her horrible relative. When we are able to find such fine medications against migraine we are able to do the same for cluster headache.

Arne May, September 2011

Logo Arte cluster

"Canzone per Claudio”
©Giuseppe Capobianco

My Cluster Headache
Android Application

Thanks to Christophe Delage