Hi all,
Let me preface this with I've suffered from CH's since I was about 12 years old. As a female, I was brushed off and misdiagnosed for years. I'm 28 now, and for the longest time couldn't find a single other person who a) suffered from CHs firsthand, or b) even knew what they were, so finding this forum has been a godsend. I've found more useful information on this site than from all of the neurologists I've seen, and knowing I'm not alone is incredibly helpful.
My question for the group is this: in the past, my cycles have fortunately been relatively short. As I've gotten older, I've found the duration and the pain has gotten increasingly worse, but fortunately, nerve blocks have historically cut my cycles altogether. One nerve block and I'm largely back in remission.
My last remission lasted two years, but 7 weeks ago they came back. They're lasting longer than ever before (1.5-2hrs), the pain is significantly worse, and this time, the nerve block did nothing. I'm wondering a few things...1. What's the longest your episodic cluster cycles have lasted?, 2. How do you know if/when episodic has evolved into chronic?, 3. Is there anything I can do to stop this cycle apart from steroids? I was on them recently for ~ a month and am still recovering from the side effects.
Thanks all!
