Hey all.

My CHs used to be so consistent you could set your damn watch by them. The times generally changed from cycle to cycle. 7:30 PM one cycle, 9 PM another. I have always been fortunate though, that they never came during the day, only one cycle was late at night, they only came once a day, and I always had shadows (very low shadows) 30 minutes beforehand, so Imitrex Pills (I know they aren't the best in pill form, but really I didn't have to deal with it long because of my 30 minute forwarning, and I cannot do shots ;) ) worked well because they were in my belly for 30 minutes before a hit, and I only had to deal with it for 15 to 30 minutes. But my Kip was always high, 8 to 10.

Well this cycle started at 1:30 AM, and it was on BOTH sides at the same time. But the pain was low, maybe a 6, although on both sides. Then it went back to my most common left side. The pain was pretty tolerable (as far as my usual CHs) at maybe a Kip 5 or 6. No issue, it was normal, then it started to shift and went to 1:30 PM, and I had them twice a day. So I went to the doc and got on my Verap 240 X 3 and Trex just like usual. Well in a couple days they went away and it was life as usual. Then, Monday, I had one at 8:30 PM, and it was pretty bad (maybe a 7 or 8), and on Tuesday at 5, which went away in 5 minutes, but no foreshadow on either of them. Then Wednesday I had a NASTY CH (Kip 11?!?!?! Suicide contemplation) at 7 PM that nothing killed, I suffered for 3 hours. Last night I got a moderate one at 1:30 AM that went away quick.

Is it common for them to become so random after 15 years? I am just so used to it being the same thing that I am a bit worried about how random they have become. Today is my B-day and I don't want to be out with my family and get tagged at the dinner table.  :-[

Mate, you've perfectly described what I call "wild-cats" and I hate 'em with a vengeance. What hurts even more is that I can't pass on a single hint as to how to better cope with them other than to say Happy Birthday and mean it.

Cheers and beers from down under,

Brian.

sandt38 wrote on Aug 8^th, 2008 at 10:02am:

NASTY CH (Kip 11?!?!?! Suicide contemplation)

First of all, there is no such thing as a KIP 11 or higher.  What we have to do, is re-adjust our previous hits.  Ones that we THOUGHT were 10's are now lowered to 9's.  It is fairly common to have to do.


As far as the regularity of hits changing, that is just the normal cussedness of the beast.  Just when you think you have him figured out, he messes with your head (in more ways than one) and changes his tactics.

In my 29 years of the beast, he has changed constantly.

And yes, I have gotten the double sided hits too.  They are the worst!  I used to be a pure lefty.  Now I never know which side is going to attack me.  (as a matter of fact, I just realized I have some tingling on my right side .. Looks like I have a righty coming up.  Oh JOY!)

Bear with his ornery ways.  You can beat it!

Good luck!

Chuck

Actually, I have had worse, it was just an attempt to explain it was a nightmare  ;)

Happy Birthday.. and welcome to the world of ??????

What you're experiencing is "common" for CH. Just when you think you have a handle on them - they change just to keep you on your toes.

You didn't say what 'treatment' you're on.  Have you tried O2 on a high flow rate? That and an energy drink will (most of the time) abort mine in record time. It can sometimes turn a 'miserable" evening into a quick trip to the car and back to the festivities.

Hugs BD

Sorry Barbara, in my intro I stated Verap and Trex. Energy drinks don't do it for me, and I have not tried O2. They had subsided for a couple weeks so I thought I was out of the woods, is why I didn't have a go on the O2. I figured if i deal with it more this weekend i will try the O2, because my doctor suggested it. I just ignored it thinking it was hogwash until I found CH.com ;)

Sandt38, I have had random cluster bouts my whole life.  Some bouts the clusters only came during the day (like 3 or so), now they're on at night and early morning.  My old bouts use to be 4-7 weeks when I smoked.  Now, they're 2 weeks, with 2 CH's/night after quitting.  

Anyway, I hope the Beast doesn't ruin your birthday.

Happy Birthday :)

Bummer it's changing up on you.  Gary was never episodic and though initially some hits came at regular times, he always had the "wild cats."  Now they're completely random.

Happy B-day and hope the beast doesn't visit the wrong time on your day!

Laurie

[quote author=293B343E2E69625A0 link=1218204173/0#0 date=1218204171]Hey all.


Is it common for them to become so random after 15 years? I am just so used to it being the same thing that I am a bit worried about how random they have become. Today is my B-day and I don't want to be out with my family and get tagged at the dinner table.  :-[/quote]

Hi San,

Quick answer...yes! 26 and counting for me. I actually came to rely on the consistency of timing and cycles. Now the only consistent is how INCONSISTENT the hits are (starting 4,5 or geez, maybe 6 yrs ago). Best to just be prepared at any time. I carry Zomig NS, several cans of "Wired" (my energy drink of choice) and my favorite companion, an e-tank with a clustermask (which is gettin OLD, the mask that is, as it's now unavailable). Oh, and verapamil, which I titrate depending on cycle.

HBD, be prepared and live your life.

Best,

Jon

What you're describing is common for me. My hits within the cycle are consistent, but each cycle is different. I've had several of the, "wake you up two hours after you go to sleep" cycles. But I had another cycle where I got hit at 9 pm every night, another where it was at 5 pm. Based on the other responses so far, sounds like this is normal. The length of my cycles are very consistent - always three months.

You know... CH really is wierd. Have any of you ever told someone that doesn't know about CH that you can "set a watch by your headache"? I've used that phrase before. I've also told people I have to get home my headache is coming soon. Man, the looks I get.