Yes. Some people stay chronic, never have a remission. Some people are episodic their whole life.  And some vacilate between the two. Not much in the way of rhyme or reason.

Does he have oxygen yet? A decent prevent med? Have you checked out clusterbusters.com?

Joe

Hello Bri, this is my first post. After reading and reading and reading many days, and weeping over the relief of the realization that there really are others who know what we are going thru, and crying over the pain that so many are bearing, I have been moved to post. 

My husband began with episodic clusters almost 16 years ago, which two years ago became chronic with avengence! 8 - 10 hits a day (yes, everyday, all year long). I know he was taking way too many triptans than prescribed and soon became dependent on narcotics from the ER to break the cycle for about 24 hours. He has been to headche specialists and neurologists for the past 13 years, and has tried numerous preventatives and abortives along the way.  He became discouraged when most were not effective in any way anymore. He was no longer able to go to work, and now has no insurance any longer either.  We have applied for disability also, but so far have heard nothing.  He is a veteran and finally has been getting some care thru the VA.  They are just learning about this condition along with a few others he has also. He feels like a guinea pig and does not want to "start over".  He had a gamma knife surgery in Dec of 2010 that has now reduced his hits to 3 - 4 a day. But still too many that holding a job is not possible.  So now, he must slowly detox from the narcs before anything else can be tried.  They have taken over his system. So on top of the dance, he will be going thru withdrawals. The Neurologist says this is one of the worst cases he has seen and that is it NOT our fault. 

You asked if it will ever end....I don't know. I can only pray!  I have gone through so many phases myself.  Tears roll as I write this. I know our next few months will be the toughest yet, as his body will be battling and looking for the narcs it used to get.  The irritability will become worse, throwing things, slamming things....and if you try to say anything during the dance; be prepared to hear very hurtful things.  I don't know what our next step will be, but we have to get through this one first.  I live for the moment also. I etch in my memory the smile on his face when he is feeling good and the grandchildren love on him.  Mine is a good man also, hard working, and has said he would work nonstop if he felt better, to pay for the deep debt we are in medically.  We had to put up our home 6 year ago, and now live in a mobile. I actually have learned to love it. (less to clean ) I still work full-time, I also entertain (sing) and that is my relief.  I feel helpless most of the time, but do what I can.  Life is hard, but I get my strength thru my Maker.

I have talked about this site with him, but can't get him on yet.  I print some things out, but he has no interest in what anyone has to say at the moment.  He feels no one understands.  I felt that way too...until I found this site!  He is in a very depressed state right now.  I lean on the hope......Keep supporting, don't give up!  I know that I am all he has and trusts, if I lose hope too, life could take a turn for the worse.  That is a scarey thought, but unfortunatley...real.

Thank you all for this site. As I find time, I hope to be on more and more.

Beth

We have asked ourselves the same question... We understand your frustration.