Let me first say I feel very Lucky and even blessed.
I first started experiencing these terrible HA's around the end of May, beginning of June 2010. At first they were somewhat occasional (every other or couple days) then over the course of a week or two they started coming more regular and always around the same time every evening. Then I started getting hit two, sometimes three times a night, and finally decided I better see a doc.(with a little convincing from my wife) My regular physician had retired a couple years earlier so I just made an appt to see the first one I could. He gave me some scrips (Isometh/APAP Dichlo) which obviously didn't touch these things so I returned to him a few days later and he referred me to a Dr. of Int. Med.. This is where I start feeling lucky because this Dr. at least had the wherewithall and some awareness to suspected it may be CH. He immediately prescribed O2 (albeit initially @ 7Lpm), and some kind of nasal med, can't remember what it was, Imitrex or some other triptan(?).. So after enduring for 3-4+ wks I finally was getting SOME relief and had a name for it so I was able to do some research and came across a few websites (clusterbusters, OUCH, CH.org) where I learned a few things and called the doc to ask him if he could up my O2 scrip to 15Lpm and NRB mask... no problem.
Well, needless to say now I was getting some relief. Then when I went back to see him in July he gave me a scrip for Verapamil (240mg/day). So after being armed with O2, the nasal shots and now the Verap, I was really getting somewhere, and by the end of July / beginning of August I was pretty much PF and thinking WOW! we busted this... not realizing at the time that my cycle may have just ended.

Well, in January 2011 my insurance changed and I now have a $4000 yr. deductible,,, but I didn't get a bill and didn't realize until October, when I got the bill, that I was being charged $88 per mo. for the O2 equipment,,, which by the way I hadn't used in over a year because I never got hit with another CH cycle. So I told them they might as well pick it up since I'm not using it but being charged for it. So they send the guy over and he says he's here to pick up an O2 regulator for return... I say 'what about the O2 cylinders?' (I had 4 E cyls. and 2 D cyls, all full except one), he says 'nope, can't take those, my order only says to pick up the regulator'. I thought, oh well, at least I have O2 handy in case I ever need it again. Well, three years go by, I never get another CH hit and figure what will I ever use these for? so I call the service back and explain it to them and have them come pick up the O2 cylinders. So this is last October, I've been PF for over 4 years, no more O2 in the house, all the other meds have been used up or expired... fast forward to last week, Friday June 5th I get hit... not too bad, maybe a 3-4 on the pain scale and only last about 10-15 minutes... just enough to let me know the SOB is right around the corner and could strike anytime. Saturday is fine, Sunday is fine until about 9:30 p.m. when I get a little hit again, a little higher on the pain and lasting a little longer, maybe 20-30-mins.. I go to bed around midnight and get hit at 1:30 a.m.. this ones even worse... no O2, no meds to take that'll help but fortunately my ever thoughtful and caring wife decided to buy some Monster drinks when she was shopping on Sunday. So I slam one of those and start making myself hyper ventilate... and I don't just me quick shallow breaths, I'm talking sucking as much air as possible and trying to expel every last molecule of CO2 from my lungs (something I read here made me think of that), so I'm taking as deep breaths as humanly possible, exhaling as much as possible and doing this as rapidly as possible. Well I think it worked... I went from a K7 or 8 down to,,, well maybe a 1 in about 15-20 mins.. Certainly not like having pure O2 @ 15L but I think it helped. I've also found that if/when I can quit trying to crush my skull with my hand I will rub the back of my neck at the base of the skull and try to find that sweet spot to massage at the occipital nerve, seems to help a little, and even massaging the carotid artery in my neck seems to do something.
Monday evening around 10 pm while walking my dog I started getting attacked so I tried to just make myself breath deeper and faster while walking and it never really hit me... maybe it was just a shadow, I don't know. That night I got woke up at 1:30 a.m. and again at 4 a.m., both time I was probably at a K4-5 when I woke up and by the time I got out of bed, down to the fridge and slammed a Monster it had escalated to 7-8, and then I went into my hyper-ventilate routine and was able to knock them out in about 20 minutes. Better than head banging for an hour or more!

So Tuesday made me realize I'm back in cycle and I probably should lay off the evening cocktails. Tues. p.m. was PF, Wed. was PF until about 7:30 p.m., at the first sign of a hit coming on I slammed my Monster and started my hyper-vent routine and was able to keep it down to a K4-5 and killed it in less than 15 mins.. 2:30 Thursday a.m. got hit again,,, same routine took care of K7-8 in 15-20 min..

And so it's been going the last few days/nights. Friday night I thought I might try going to bed earlier to see what happens... in bed by 9:30, up at 10:44,,, back in bed @1:30, up @ 2:22, those were both in the K9-10 range and I was able to kill them in about 20 mins.. Saturday I decided to stay up later, probably just afraid to even go to bed. Finally decided to go to bed at 3:30 a.m. and see what happens, figuring the SOB will rear his ugly head again after I sleep for an hour... well guess what?... slept PF until 11 a.m.. I thought to myself, 'Not to complain but WTF? Kinda like that annoying little friend who doesn't come around when you expect him, only shows up when he needs/wants something...'
So anyway, I'm gonna try that one again tonight. Last night I went to sleep around 9 and the bastard was already attacking me by 9:35... and that one turned into a real doozie, K9-10, even with Monster drink, hyper-venting AND two ice paks on the head and back of neck, still took over a half hour to kill. Tonight I'm stayin' up late again, probly just afraid to go to bed again, but maybe it'll at least confuse the shit out of him.      

Sorry if I got a little long on the wind for my first / intro post but I wanted to share my experience in the hope that it may help someone else who's without meds or O2, and to see what kind of feed back I get from you guys on this method I've been using so far... and this is just temporary until I can get get in to see the doc, which isn't until Thursday, and get  my O2 and prescriptions renewed (he won't prescribe, even the O2, until he sees me since it's been a few years)... and since this pattern has been so inconsistent I'm kinda waiting to see what happens the next couple of days, and I may just be looking for a referral for a headache specialist. I will also be looking into getting some lab work done and may have to give the D3 regimen a try.

I can't thank you enough for this site and the wealth of knowledge... I don't know where I'd be without it.

Like I stated earlier I actually feel lucky and blessed.Lucky that I found this site with the wealth of knowledge and genuine caring. Lucky that I'm not as bad off as some of you. I don't know how those of you who are chronic do it, or even those who are episodic with 5,6,7,8 or more hits a day for months at a time... hopefully I'll never know and to those who have it worse than me, you have my heartfelt sympathy, even though I know sympathy isn't what you want. I wish I could be more eloquent.

When I read what some people have gone through with the doctors, I feel lucky that I found a doctor on the first (or second) try that at least had some awareness of CH and was able to make a difference right away.

And I feel lucky that I have a beautiful wife with a beautiful, kind, caring and compassionate heart that helps me through this.

Mostly I feel BLESSED because I believe it's my faith in God that leads me to all the other things I feel lucky for.

Well guess what, it's going on 3:00 a.m. and I'm feelin' lucky... NOT!
maybe it's just a shadow and not a full hit coming on. Should I go to bed or just hang out a while and see?

Thanks for reading
Thanks for caring
Thanks for sharing

Steve                  

G'day Steve. Welcome home.

You might try reading up on the D3 regimen. It's working great for a lot of us.

Welcome to Clusterville...

Go to medications and treatment section and look under the 123 pain free days there is a lot of info there on D-3

Mark