Hi Mieke - my husband has this painful condition and has been dealing with it for about five years now. Before he was diagnosed, he spent three months in bed in complete darkness, coming out only to eat and use the bathroom. Finally, we were sent to a pain management doctor who has helped him with this condition. He gets the greater and lesser occipital nerves burnt (radio frequency ablation) on both sides of his head. The first injections lasted three years! What a relief!! He also takes Morephine Sulfate twice daily, which seem to keep things under control. He does have some break-thru episodes, lasting maybe 6-8 hours and he simply has to go to bed to sleep it off.

I hope you find the relief you deserve....this is a very mean disease, and one which takes time not only to diagnose but to get under control for some patients. I wish you well and much luck with your recovery!

Suzy