After a two decade affair with this joyful "challenge", I have some thoughts:

1. The pain inside is horrific, yet on the exterior, we look 98% normal.    This is whats so cruel for me.   Normal folks only have to deal with such pain when something visibly drastic happens to them, like their arm is fractured and the bones and tendons are visible.   Those sufferers don't have to worry about "explaining" why they are writhing in pain.   Of course, maybe that's a blessing.  For our exterior to match my pain, I would have to be walking around with 2 forks, 3 steak knives, and one garden stake, all protruding from my right eye socket.   People would understand, but then the police would be involved.

2. The fact that Docs won't even try to use anything narcotic still amazes me, and tells us just what we are dealing with.   People wounded in war get morphine, but that won't really help us.  Amazing, and frankly, not fair.   People that throw their back get better stuff than us.

3. I had a kidney stone once, and even though that pain was "unbearable", I would put it significantly below my ch.

4. Treatments aren't "normal" either.  "Hey, I'll be right back to this meeting, I am just going to go to my car and suck down some oxygen."    "O excuse me honey, while I leave this bar on our date, so I can hide in a stairwell and try and do some jumping jacks till my headache goes away"  Or "excuse me, while I give myself a shot that makes it so I will actually be a human being".    They are all weird to be honest about, without giving a 30 minute dissertation about your condition.  At this point, I don't give a sh&t, I will pull out 02 at a dinner party.   But in my younger years, I was self conscious about my condition.

5. Whats the worst is when you catch yourself without anything, and you are absolutely stuck.  Like when I was on a 4 hour flight last week.   I wonder what that lady to my left thought about me, as I tapped my foot, held my hand over my eye, and did my best not to squirm and writhe for an hour and a half.  

6.  The fact that things work to prevent or abort them, INCONSISTENTLY, is most frustrating.    Over the years I've felt like some sort of Pavlov dog, looking for the right combination that will give me the treat.   

7.  Lucky for me, I can manage them pretty well, now.   Verapamil reduces ch frequency when incycle, Cycles are 3 mos or less, O2 almost always works, exercise often works, and imitrex is effective when they don't.    However, for the first 10 years I had them, I was in "deal mode".   Thank god for the specialist I finally went to after college.  Some of my college days & nights were rough.

8.  I travel a lot for business, and that can be most inconvenient.

9.  Sometimes I get scared that "wondering if I will get one" will actually bring one on.   I do think that thinking about one can start one.

10.  When one is triggered via alcohol, I have successfully proved, more than once, that it is impossible to "drink the pain away".  I think about this every time I see a western gunslinger movie, where a character takes a pull of whiskey before getting a bullet removed.  Didn't work for my pain buddy!

11.Some silver linings for me: 
- I drink less on them, as that is a trigger for the toughest headaches.
- I exercise more, as that does help with the cycles
- I appreciate my life more than others, who have never experienced what a debilitating condition is like.  I am thankful that mine is temporary.
- I am an adult, and I am experienced, and I know that I can deal (easy to say while pf).  I am not longer that kid in 6Th grade, who was not only in massive (throw up) pain in class, but was also confused.
- My wife, of course, is cool about it, and supportive.

I have been on this site for years, but never active.   I appreciate all the information I've learned here, and reading the posts has been therapeutic in its own way.

Nice damned first post! I hope to hear more from you. Way too much of your post had me saying THAT'S ME! From the weariness over explaining WHY it's not like a migrain and WHY you carry 02 everywhere and WHY you don't dare have even one beer!

Let your supporter know they're welcome on the supporters board. My wife has gained a boatload of insight on CH there, also a nice place for them to vent when they get sick of us.

Welcome to the board.

Joe

I agree, Joe, this is a great post. I am self employed, and except for those times I am meeting with someone, I pretty much control my schedule and can limit contact during the worst of a cycle. I have often wondered how others cope with a job requiring regular and public hours. Over the years I have developed a support network of those family members and friends who can fill in for me if I have to duck out suddenly. Perhaps others have done this too?

Guiseppi wrote on Jun 6^th, 2010 at 10:45pm:

Nice damned first post! I hope to hear more from you. Way too much of your post had me saying THAT'S ME!

I wholeheartedly agree Joe, very nice first post!!!  Welcome to the community Textbook.....I too hope to hear more from you!!

Dallas Denny

TextbookEpiscodic wrote on Jun 6^th, 2010 at 6:52pm:

9.  Sometimes I get scared that "wondering if I will get one" will actually bring one on.   I do think that thinking about one can start one.

I agree, and its one of the more puzzling aspects of CH to me. It can not only seem to bring one on, but if I don't concentrate on relaxing (while worrying about my shadows), the anxiety can induce a Tension headache.

The notion that CH's are in any way psychosomatic is worrisome to say the least. Yet it does seem plausible.

My Shadows are easily detectable and I usually know if I'm going to get a CH during the day or night, almost as soon as I wake up. So trying to ignore them is almost impossible, yet what I must do to some extent.

Thanks for sharing all your thoughts. Very insightful.

Nice.
I was talking to my daughter's boyfriends mother yesterday and she asked me what they felt like, and after 15 years of these things I still haven't been able to convey a similar pain, not that I try that much any more. Point taken about the broken arm.
Rookie mistake on the airplane...kidding, why do we still do that???
You drink in cycle? More guts than me!
Keep the posts coming.