Hi all, my name is Justin Smith and I too suffer from these bastard cluster headaches! I got my first cycle about 6 years ago. I remember very well sitting in my apartment one morning and started to get shadows. It was a very strange fewling. Nothing like I'd ever felt before. The entire episode onlt lasted 2 or 3 minutes and so I thought very little of it. Then nothing for a few days. Then again one morning same thing only this time the feeling grew in intensity and lasted for about 15 min. I was a little put off but still figured it was some tension headache or something. The next morning however it was on. I experienced my first full fledged CH. Oh my god!!! I had no idea what was happening. I jist new Id never felt any pain like it before in my life! That episode lasted about 4 hours and each day after that they got worse and worse and longer and longer. After about a week of excrutiating pain I got the worst and longest one yet. It woke me at 4 am and lasted until 6pm!! During that one I made the decision it was time to go to the hospital so i called my mom and she took me to the er. That was around 4 in the afternoon and by six i was still waiting to be seen and the CH was begining to fade. When I was finally seen i was given an mri andthe doctor diagnosed the problem as cluster headaches. I was prescribed some pill that i cant remember now but were 120 dollars for 6 pills that i had to take two of everytime I felt an episode coming on. Useless. I had already come up with a regiment of hot coffee, cold dark room, and icy hot! Yes, icy hot. I always smear the entire left side of my head in as much of the stuff as i can get out of the tube. If im lucky i get some in my eye which helps at least momentarily take my mind off of the hell nreaking loose in my mind. When the cycle ended a few weeks later I was beyond joy and relief and prayed I would never feel that pain again. Not the case. 18 months later, I woke one morning to that old familiar feeling. And that's how it has gone ever since. With each episode lasting 2 to 10 hours. And cycles lasting about a month to month and a half. I recently started a new cycle. Aug 1st in fact. :/ and have been going crazy looking for new treatments when I came across this sight and just in reading the homepage first hand experiences I was hooked!! I honestly got emotional as I read. It's so comforting and validating to hear others are dealing with this same demon!! I am also very interested in this vitamin d3 thing. Got the pills today I will keep you updated on how they work. I want to thank you for this website. I have felt so alone and as though i could never express to others exactly what it is my head goes through. All i ever hear is "Oh like migraines?" No, not like migraines at all!! People just cant identify with what this pain is. And for those who suffer daily!? You amaze me!! I get these things every 18 months for 8 weeks and there have been multiple occasions that i felt at the end of my rope and that there was no getting better. That i may have to take drastic measures to kill this pain. And you guys deal with it day in and day out. You are hero's. You are inspiration and I am truly in awe of your strength.

An all too familiar story. Glad you found us but really sorry to hear you are in so much pain. There's so much to share and to say, but for now, here's a checklist of how you could proceed to get a handle on the beast:

1. Find a good headache specialist-this is imperative
2. Start a prednisone taper (starting around 80mg/day)
3. Start a preventative working up to a high enough dose to be effective in treating CHs, like 240mg/day verapamil increasing as directed up to 960mg/day. Other preventatives include Topamax, carbomazapine, oxycarbomazapine, and more. Pay attention to the doses-often we hear I tried that but the dose was too low to be effective.
4. Get an effective oxygen setup: a nonrebreather mask and a regulator that will go up to 25lpm along with a 3 liter bag. See optimask.
5. Get effective abortives, like imitrex injectables-pills are too slow-or Migranal nasal spray
6. Keep a log or journal of your attacks, and learn to use the KIP scale at left

It's a long list, but it returns to you the power needed to manage the beast. Good luck and God bless. lance

Hello justincredible,

Nice to meet you!  Sorry you have to be here but SO glad you found us!  Please keep us updated on how the vit D regiment works for you.  I hope it helps!  Even if it doesn't, there are so many other things to try.  Just reading others experiences gave me hope that they could be managed.  O2 has been a life saver for me in the past!

Good luck and God bless,
:) Mel