Exploding head syndrome: From blog post to community

A few years ago, I wrote a blog post about a weird condition, the exploding head syndrome which generated a huge traffic and about 200 comments. Not short ones, but really interesting, detailed, true patient stories from around the world and my post is now 4th in the global ranking of relevant search results.

Exploding head syndrome is a rare condition that causes the sufferer to occasionally experience a tremendously loud noise as if from within his or her own head, usually described as an explosion or a roar. This usually occurs within an hour or two of falling asleep, but is not the result of a dream. Although perceived as tremendously loud, the noise is usually not accompanied by pain.

That’s how a blog post designed for a specialized audience in a special topic can become a real database of relevant information for patients. Real example of the long tail effect.

An excerpt from one of the comments:

I’m not alone and this is such a relief!!! I think we need a Facebook page. I’ve had this off and on for about 15 years – just had one last night and I’m still out of sorts from it. I awaken terrified with my heart pounding from the sound of an enormous BANG in my head. When this happens I wake up clutching my face – often as I awaken I think “I am dead”. Unlike other people though, I do experience a physical sensation on my face – nose and mouth area – like someone has lightly slapped my face.