My name is Pam and I live in Florida.  My husband is the CH sufferer who I do my best to make life as normal as possible for.  He was diagnosed in 2010 and shortly after starting Verapamil & Prednisone his CH went away.  Since then we had almost forgotten about them when they came back with avengance in April.  Dr was fantastic and called in prescriptions the same day he called to say the CH was back.  This time the meds are doing very little.  His Verapamil was increased and we are watching to see if that will help.  If not he is fully prepared to contact the dr to get the dosage increased.  His seem to be, more recently, Tuesday thru Friday and then none Saturday-Monday multiple per day instead of the one per day he got before.  This blog has been a god send for me to read.  I've been better able to help when he can allow me, make suggestions and explain CH to friends, family & co-workers.  All of this doesn't mean I don't hurt for him it just means I don't get my feelings hurt when he doesn't want me around because I somewhat understand what is happening.  Last night was a very bad CH around 9pm but it only lasted about 30 minutes.  My guess is it was a 8-9 Kip.  Hopefully increasing the Verapamil again will do the trick.  Thanks for being here and being so open about this 'beast'.

That your husband has your support and a doc you trust are enormous helps for him!

But in reality, one of the big issues with a chronic disorder like Cluster, is how easily one can develop a "victim" state of mind. Makes the whole scene worse because of the emotional drain and feelings of powerlessness.

Until he accepts some responsibility to learn about Cluster and to engage in learning how to care for himself, he will have a harder trip than is necessary. Unfortunately, you can't nag him into action. Pass on this idea and hope that good judgment will help him see the value of taking charge vs. avoiding.