I am ready to try anything....everything to stop these damn headaches!! I have not slept more then a few hours at a time for over 15 days. Normally Prednisone puts them back in remission after about 9 days of taking them....but not this time!! I am at day 15 and I'm about to start another 15 day treatment!! I have never had to repeat the Prednisone treatment before. I am having surgery today and wonder if the very large growth on my vocal cord could have something to do with this abnormal cluster cycle. I just pray after surgery today they will be going back in remission! I can't take this anymore! I have been having about 6 to 8 headaches a day (mostly at night while I try to sleep). The pain is getting worse instead of better....last night I did the hall crawl to the bathroom. I need these headaches to go away!!

Yeah the beast can morph like a bastard when he puts his mind to it. Sadly your experience is not that unusual, a treatment that works great for several years all of a sudden comes up empty. :'(

What else do you have in your arsenal? Any decent abortives such as oxygen, imitrex injectables or nasal spray? Has your doc tried any other prevents such as verapamil, lithium or topomax?

If you haven't already looked at it, go to the post in this section, "123 pain free days and I think I know why" A simple vitamin/anti inflammatory regimen, good for you even without CH, and it's providing a lot of relief to CH'ers who try it.

Then visit our sister site,   clusterbusters.com and check out some of the alternative non main stream medicine treatments. Helping a lot of people over there.

Good luck with the surgery.

Joe

Oh yeah, I've been in those shoes. (Still in them, really. I hope you don't mind sharing.) I remember my ear surgeon almost apologizing for having to cut me open again, and I actually told him I was looking forward to it. Because I knew I'd be mercifully unconscious for at least an hour! The one time you can say "put me out, doc" and they'll actually do it.  :P

Hang in there!

Applenutcluters....where did you come up with that name!! lmao  ;D, Anyway...I was nervous about being put down and getting a cluster while under and then waking up in horrific pain, but as it turned out that did not happen. I do the imitrex injections with the onset of a cluster. My legs look like pin cushions having to give myself up to 8 to 10 shots a day for the past 15 days. I use the vial so I can control how much imitrex is going in. I find the self injections gives me too much imiterx at one dose. I usually only use 1cc per injection, so I can get 3 clusters out of one vial instead of just one cluster the vial is intended for. I did try the oxygen tanks and found them not to help that much.
Since the surgery yesterday on the growth(s) on my vocal cord and the reduction of tissue in my nose, I have had NO MORE CLUSTERS  :D, I had a gut feeling the growths had something to do with why these clusters seemed abnormal. I just hope this means I am at the end of this cycle...I am more then ready to put the beast to bed again. I am still going to read up on the D3 treatment!! I hear D3 helps with a lot of other issues besides Clusters.
Thanks  :-*

A 1cc dose is so small that I'd suspect you are not able to full relief from an attack--a bit of suppression only, so that it redevelopes quickly. The half life of suma is short to begin with and then a small dose leaves your body with little to hit the attack.

AppleNutClusters = I work for Apple retail and I'm a crazy guy and I get clusters.  :D

I was just like you - about to be put out for surgery, and more worried about coming out of it with a CH than I was about the surgery going well. I made sure the post-surg area would have oxygen available if I needed. I told my surgeon about it, too. And like you, I ended up coming out with no CH. (Just bad ear pain, which I got pain meds for.)

Bob Johnson may be right!! Maybe I was not using enough meds to put the beast to rest during a cluster! AS OF RIGHT NOW....I seem to have them back in control again. I have not had a cluster since my surgery on Wednesday!! Like "AppleNutClusters", I had told the surgery center about the clusters and they were great to me! I had a cluster about 30 minutes before surgery, so they put me on Oxygen and also put a steroid drip in my IV. I had no more clusters after that!! Since the surgery I have not had one cluster.....  ;D
I just knew the one large growth and several growths on my vocal cord plus my sinus blockage had something to do with the bad uncontrollable cluster outbreak. I thought I had a cluster in the middle of the night last night, but I think it was a dream!! I woke up and my injection was still sitting by my bed untouched!! Funny how dreams can seem so real!! I'm still going to try the D3 treatment...it sure won't hurt me either way.  ;)