davidj35 wrote on Jun 28th, 2010 at 12:00pm:Friday night dose update. Very interesting weekend, after my attack Thursday night. I decided to dose again after two weeks Friday night, because of that attack as well as a Friday evening one. I had very similar results following the dose as my previous ones, a Saturday afternoon full blown attack which I aborted with 02 as well as my usual post dose "normal" slamming headache all day. Sunday dawned bright and clear with no shadows or twinges so I decided to play some golf in the late afternoon and I stayed attack free through out. At the end of the round I decided to continue to experiment on myself and try to see if a beer or two would trigger an attack (#1 trigger for me). No attack at all just a minor shadow that came and went, so I feel I am heading back in the right direction. These last two weeks however are making me rethink my Cluster status, am I borderline chronic? I have extremely long cycles (up to 18 months) with 8 to 10 attacks a day that will switch sides of my face 8-9 months in before I go into remission for the next 18 months. What makes me question episodic vs chronic the most however is that during my remission times I am never completely PF, I get low level shadows and twinges pretty much daily but never a full blown attack. So now I am wonder if like Bonkers son Michael (only not to his extreme) do I need to keep dosing every two weeks or so to keep the beast at bay, am I chronic? If any one else has similar experiences or thoughts please let me know, all advice other than doing head stands is appreciated. Wish all PF Days and Nights.
David
My cycles are similar. I'm 40 now, but I first started getting CHs when I was 18. I was typical episodic, but over the years, my cycles got longer and longer. My last cycle was for about 24 months, then I went in remission for about 16 months, now I'm back in for 7.
I also usually switch sides at a point during the cycle. During the 24 month one, it was about half-way through...however, for this one, I switched about 3 months in.
My attacks can come as frequently as yours, but I have had some varying success with Verapamil, Nerve Blocks and IV DHE.
I'm not sure if I can answer your question, but if you are never truly pain free, it does sound like you are at least progressing towards chronic. Even though technically they state if you have CHs for 12 months straight w/o remission you are, I currently don't consider myself chronic (even though when I created this account I thought I was). I do go into remission.
I've been reading up on your posts and following your experiences, I just ordered RC seeds and am going to give them a try...thanks for keeping us updated.
Chronic