I'm very happy to have found this group.  My name is Steve, and I live in Wentzville, Missouri.  I go by Anchor Yanker because I'm an engineer on a ship in the Gulf of Mexico that sets and retrieves anchoring systems for deep water oil rigs.  If you're interested, here's my story...

I'm 41.  I think I got my first cluster at about 18 or so.  I started drinking, smoking and partying fairly heavily at about 18, and the headaches started shortly thereafter.  I was diagnosed at about 24, I think.  My Mom has always gotten migraines, and learned about clusters from her neurologist.  She brought the info to me, I went and saw him.  It was a pretty easy diagnosis.  I was getting 6 to 8 week clusters every 18 months or so.  I believe I was 26 when I went to work on a tugboat in Dutch Harbor Alaska, got run over by a cluster, and decided to quit drinking and smoking.  Haven't had a drink or a cigarette in 15 years.  For the last 12 or so years, the clusters have come every 2 to 4 years and lasted only about 4 weeks.  Adopting a healthier lifestyle definitely had a major positive impact.

Here are the factors that I believe have helped minimize the severity of my condition:

1:  No alcohol or nicotine in my life
2:  Regular and adequate sleep.  The clusters were much worse when I was working on a tugboat and could not get a regular sleep pattern.  Now that I work a regular 12 hour watch and sleep 7 hours a night, I'm much better.
3:  Minimize the stress in my life.  The last cluster began the day I started a new job.  I was wound up.  I also believe they were exacerbated by a stressful unhealthy relationship that I was in for most of my 20's. 

As for treatment, my pill of choice is Amerge.  That has been my lifesaver, and I've been lucky enough to have good insurance that will pay for it.  95% of my headaches hit when I go to bed, but before I go to sleep.  So, in a cluster, I take an Amerge every night, an hour before bed, and I sleep through the night.  I'll still have 3 or 4 breakthrough headaches in a cluster that will hit at odd times, but the Amerge prevents at least 90% of my attacks.  When I have one break through, I have been hitting it with Imitrex nasal spray, which doesn't work very often and feels like battery acid being shot into my nose.  I don't like the stuff.  Recently a doctor gave me something else to try, I can't remember the name of it, it's a different nasal shot.  Haven't had to try it yet. 

Sometimes, I can knock out a headache with vigorous exercise and hyperventilation.  As soon as I feel the first twinge, I'll go out and run up and down a staircase for 10 minutes or knock out 50 pushups.  That's probably about 40% effective.  I have not tried oxygen, but I'm looking forward to experimenting with that for the next go around. 

My last cluster was August 2007, that's what, 28 months?  The next could hit any time or it could be another 18 months.  I've had a few twinges recently, but nothing has developed.  Sometimes I'll get "Phantom" twinges that will make me say bad words, and then they'll go away and I'll be fine for months.  Absolutely have no idea why some develop into clusters and some go away on their own. 

I've had problems with insurance companies and problems with the Coast Guard regarding my condition, but so far have been able to work through them.  One insurance company would only buy me 12 Amerge pills a month.  Couldn'e get it through to them that I don't need any pills for 2 years and then I need 30 a month.  They didn't get it.  Also, the Coast Guard gave me a lot of grief.  I have a Chief Engineer's license, issued by the Coast Guard, and need a medical exam at every 5 year renewal, much like an airplane pilot.  They saw active perscriptions for the Tripitan meds (I must have the meds at all times when I'm on the ship, even though I rarely need them) and all sorts of red flags went up.  They made me see a neurologist, get an MRI, both of which I had already done, years ago.  At one point they wanted me to see a Psychiatrist.  It's like they had no idea what clusters are, so they just pulled out a form and said "Go do this, this, this, this, and this...."  Frustrating.  Took me 8 months to get my license renewed, but I finally got it.  I wonder if the FAA would issue a medical clearance to a pilot with clusters?  Any pilots out there?

So that's my story, and I'll be active on the board.  I'm looking forward to getting to know some people.  I've already learned a ton from reading the board.  I was surprised to see so many women.  I thought migraines were girl headaches and clusters were boy headaches.  But then again, I've never known anyone who's had them. 

Thanks for reading this if you're still here.  You'll be seeing more of me.

Hi Steve,

I think that you were lucky to find out about Amerge early on. Several of us get the same overnight result as you do - it's my favorite med to use when I know I'm going to have a bad night.

Hopefully the spray you have is Zomig nasal spray - another favorite for many of us around here including me - always two in my pocket for emergency use.

I would REALLY encourage you to get the O2 set up and ready. High flow O2 is easily my number one abortive, but I need a regulator that gives me at least 25 liters per minute flow which is non-standard - so I had to buy my own for $50 online.

As long as I have a tank nearby, I kill a "hit" in 3-5 minutes without ever being in real pain. For the occasions that I can't get to the O2, I use the Zomig which works well - IF (BIG IF) I don't wait to see if "this one is going to hurt" - because by then it's too late.

All of the above are intended to "abort" attacks. If you work with your doc to find a good preventative like Verapamil or Lithium to reduce the number of hits, you will have have good control of your CH's!

Marc

Well, I just got a letter from the Coast Guard stating that I am on "Medical Waiver" and if my condition changes, I am to notify them, so that they can ruin my career.    Yeah, that's gonna happen...

My situation is different than that of a pilot.  At any given time, there are 3 licensed and 2 unlicensed engineers on my ship.  If I have to check out for a half an hour, someone will cover for me.  The engine room doesn't require minute by minute supervision.  I'm not going to put the engine room on autopilot and overfly Minneapolis by 150 miles. 

At any rate, I am an intelligent, responsible adult, and the only person who gets to decide when I cannot do my job is me.  I've had these things for 23 years, and I've always been able to do my job. 

Sorry, that may have been a bit of a rant.  I get a little defensive sometimes.  If my career on the sea was taken away, I have absloutely no idea what I would do.  This is all I've ever done.

Please forgive me for my little negative venting. I wish you the best in your career. I'm deleting that post .

Don