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They’re back after 5 years


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I don’t have much to add to the board except to say that after five nearly cluster-free blissful years (with a handful of smaller CH incidents here and there), the cycle is back on and last night had worst, most painful CH since 2015. First time that my partner saw me in full throes of pain and have found it hard to explain to him what I’m going through. 

Dosing has worked for me before and is what seemingly worked to keep me cluster-free for 5 years so I’m going to try again tomorrow and hope I’ll be back on track. Wish me luck. 

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Hi memememe (nice nick)

Here's how I explain the pain to people, might help clarify things with your partner. 

Have him think back to when he had a muscle cramp in his calf muscle, most people have had at least one in their life. 

Then, ask him to double that amount of pain, and have him think about how when a muscle cramp starts, it starts out of the blue with no warning. And then, for the 30 seconds or a minute that it lasts, it is all you can think about. It is an all consuming pain, nothing else exists but the muscle cramp.

Then, have him double the pain level again.

Then, shrink it down to where the pain would fit in his palm, but maintain that same intensity. Now, ask him to imagine that in his eye and lasting for 3 hours. 


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