From my own experience and from what I have learned from the others that have SUNCT is that it is a little different for each of us and being there are so few of us the doctors do not even know what is normal. The only sure thing seems to be that it comes in cycles just like Clusters, it effects one side of the face around the eye just like clusters. I think the main difference is that SUNCT is not as intense but happens far more often, mine are 24 hours a day getting no break when it is happening it just changes in intensity from annoying to making me legs go limp at times but nothing like what I have seen of a cluster attack. My first cycle lasted about a year then a year off, my second lasted two years then again about a year off the third lasted four years then once again a little over a year off then started again about a month ago but so far the Olanzapine is keeping it at bay, so far. I also have a numbness on the left side of my face even half my tong is a little numb like when the Novocain from the dentist is just about worn off. But one of the people I know has a cycle that started nine years ago and has never gone into remission and his pain sounds more intense than what I have dealt with myself so again we are all a bit different it seems.
The pain tens to feel like something trying to push the eye out from behind or like a red hot needle being pushed into the eye but most of the time just a dull aching that drives me nuts not real painful but relentless, I go to sleep with it and wake with it but I can sleep and only sometimes get jolted from sleep from pain but it does happen just not too often thank God.
Matt