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Cluster Headache Help and Support >> Cluster Headache Specific >> Well, its come to this..........
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Message started by superhawk2300 on Sep 26th, 2008 at 4:22pm

Title: Well, its come to this..........
Post by superhawk2300 on Sep 26th, 2008 at 4:22pm
Yesterday I put it off as a lark.  :-X

Today I just had my second hit in two days. Each was coming off of a small nap.

Small hits, in fact i thought they might be real bad shadows except both happened while I was down and out.

If this goes into a cycle it will be my second cycle this year, about 10 months apart.  >:( >:( >:( >:( >:( >:(

I know people live with a lot worse, but my cycles have been 4 years apart, then 3 - 4, then 2 was my last PF period.

Seems I am heading towards chronic at full steam.

Anyone else experience a dramatic shortening of PF time between cycles?

Anyone lese experience a dramtic shortening of PF between cycles and have anything positive to report from the experience?

Title: Re: Well, its come to this..........
Post by Brew on Sep 26th, 2008 at 4:29pm
If your last PF time was 2 years, I'd hardly call where you're headed "full steam toward chronic."

I was episodic for 10 years or so, two cycles a year, each lasting about 3 months. I was PF half the time, essentially.

Then I experienced two 18-month long cycles with about a 6 month break between them. After the last of those was over, I had one more short cycle (about six weeks). That was at the beginning of this year. Been PF ever since.

So chronic, episodic, whatever. I just deal with it as it comes and try not to get too nutz-o about it.

Bill

Title: Re: Well, its come to this..........
Post by thebbz on Sep 26th, 2008 at 4:37pm

Quote:
Seems I am heading towards chronic at full steam.

No sir! At least hope not. ;)

Anyone else experience a dramatic shortening of PF time between cycles?

Yes, went from one every 18 months to two years, then bam one after another after another.
Anyone lese experience a dramtic shortening of PF between cycles and have anything positive to report from the experience?


I've had back to back episodes for up to 16 months. I didn't want to think about chronic. Then the bastard went to twice a year for 10 years or so.  I am now PF three years so far.  I learned alot about CH and myself.
I have a perspective about pain not many people know about.
Hang tough...it does change over the years.
all the best
thebb

Title: Re: Well, its come to this..........
Post by Jean on Sep 26th, 2008 at 4:53pm
I've had CH since I was ten.  It has changed a lot over the years.  HAs were very random as a child, then went to every Spring and Fall and then went to just Spring.  Now I seem to have shadows all the time, and a very tender lump on the back of my neck that I'm pretty sure is my " Cluster lump".    The beast is unpredictable.....he likes to keep us on our toes.   Try not to worry.    

PF wishes,

Jeannie

Title: Re: Well, its come to this..........
Post by Guiseppi on Sep 26th, 2008 at 4:54pm
Change......the only constant with the beast! ;) You get pissed at him, flip him the bird if that helps, then stock up and get ready to do battle!

Guiseppi

Title: Re: Well, its come to this..........
Post by Ernie Moss aka Wishbone on Sep 26th, 2008 at 6:17pm
You are spot on Guiseppi the only thing predictable about the beast is that he is unpredicatable.  I have had CH for only 14 years and I have gone from 6 mos off then 1 mo on to 6 mos off to 3mos on, to 3mos off to 3mos on, to 18 mos off to 6mo on. From high kip hits every few days to lower kip hits 6-8 time a day.  Just load up on the O2 and don't leave home without it.

The beast is one of those issues you can't prevent, you may can control with diet, but basically you can't control therefore you shouldn't worry, hopefully you won't become chronic, but if you do deal with it then, but until then don't worry yourself of the fear that it will happen, enjoy the PF days.  Wishbone.

Title: Re: Well, its come to this..........
Post by superhawk2300 on Sep 26th, 2008 at 7:39pm
You guys are right. No sense worrying about anything. Won't help and might hurt. Thanks.

I looked back at some of my supportive posts and I want to punch myself in the face. All the words are so simple and easy until now.

I am sitting here and the familiar sensation is building behind my eye. I am pissed. And annoyed. And pissed. I just lost my patience with my little guy and I did not plan on this for a good year yet. Oddly enough some one just asked about my head and I told them "Yah I am good until next year". What a pile......

Did I mention I am pissed. All the shit going on right now and this happens. Now I really hope I don't lose my job. How the hell can opne find work looking like, er, hell? I woke up today and it looked like I got punched in the face. It wasn't dark circles, there was a brown bruise under my dark circle, halfway down my face.

On a side note I've been very tired leading up to this. For educations sake does anyone get wiped out energywise a week or so before the cycle starts?

Did I mention I am pissed.....

Title: Re: Well, its come to this..........
Post by Brew on Sep 26th, 2008 at 7:50pm

superhawk2300 wrote on Sep 26th, 2008 at 7:39pm:
Did I mention I am pissed.....

Yeah, you did. You should try to do something about that. Nothing wrong with getting angry from time to time as long as you have a productive outlet for it. Otherwise it's negative energy. It'll do nothing but eat you up.

Title: Re: Well, its come to this..........
Post by superhawk2300 on Sep 26th, 2008 at 7:52pm
damn, where is a troll when you need one?

Title: Re: Well, its come to this..........
Post by Guiseppi on Sep 26th, 2008 at 8:12pm
damn, where is a troll when you need one?

I have an aluminum foil hat that is guaranteed to cure CH when used in conjunction with the habanero suppositories! ;D  

(Fire Away!!!!!)

Guiseppi

Title: Re: Well, its come to this..........
Post by superhawk2300 on Sep 26th, 2008 at 8:33pm
LOL - for real!

Thanks G, you rock as usual.

Laughter was not what I was looking for but it got the desired effect anyways!



Title: Re: Well, its come to this..........
Post by superhawk2300 on Sep 27th, 2008 at 3:24am
Well, 2:30am and the Red Bull has worn off enough that I may get some sleep. It took those nasty shadows right away - it is amazing.

Wish me luck.............

Title: Re: Well, its come to this..........
Post by Ungweliante on Sep 27th, 2008 at 3:35am
Superhawk,

It's really hard to stay positive sometimes when you feel like you have just figured the beast out and then it changes. Don't worry about being pissed or disappointed or such. It's natural.

I really wish you'll have a short cycle this time, if it indeed becomes one.

- Best regards and PFDAN,
Rosa

Title: Re: Well, its come to this..........
Post by George_J on Sep 27th, 2008 at 8:35am
Getting pissed at the thing is like getting pissed at the weather.  It's going to do what it does, and you just adapt to it.  

Nothing else to be done.  

I need a "shrug" smiley.

Hang tough, stay frosty, and keep your powder dry.

Best wishes,

George

Title: Re: Well, its come to this..........
Post by Tara Ann on Sep 27th, 2008 at 9:37am
Hang in there!

(I sometimes get pissed at uncontrollable things like the weather and ch.....but I also can be a moody b*tch)

-edited to add... that the above sounded funny in my head but came out sounding sarcastic :D

Title: Re: Well, its come to this..........
Post by barry_sword on Sep 27th, 2008 at 9:42am
Superhawk, enjoy every precious PF moment while out of cycle, but be armed and ready to do battle with the beast when he comes a knock'n on your door. Never let your guard down.

I just came off a eight month remission and am doing battle once again, and my cycles are usually long. Hang in there, and do not assume right now that you are going chronic, one day at a time! ;)

PF wishes to you!

Title: Re: Well, its come to this..........
Post by superhawk2300 on Sep 27th, 2008 at 11:11am
Thanks gang.

Got about 3 hours of sleep last night before my 3 year old came in the bedroom to lay by her mommie. I am guessing the the age of three is when the "why?" phase starts, because they passed more words between them at 6am than is between the covers of War and Peace.

So I got another hour of sleep when my wife finally took my very own "Chatty Cathie" doll downstairs to make pancakes.

Then my little guy in the other room started rambling on talking to his 18 month bad self. After about 10 minutes of listening to him "gobble duck-a bob-bob-bob" to himself I gave up and decided I was up for the day.

Good news is after th red bull and melatonin I got no hits last night. Today will be an experiment to see if I get re-hit during a nap.

Title: Re: Well, its come to this..........
Post by thebbz on Sep 28th, 2008 at 12:38pm
Sounds like your getting some rest. That is a good thing indeed.


Quote:
I am sitting here and the familiar sensation is building behind my eye. I am pissed. And annoyed. And pissed.


I get a bit angry everytime I get a shadow. I use that to get even with the demon bastard. I get angry because after all these years I still have CH. My anger is quickly turned to elation when I stomp the demon sombitch in the ground. This battle is personal, no sense not getting some satisfaction from beating the demons a$$ . I think I am not alone having holes in the walls from anger with the beast, at least I do and not all are from my head. :D Glad I dont do that anymore. ;D Too old, I'd probably break a hip. Have a good day with the family and try to enjoy the small things.
all the best
thebb

Title: Re: Well, its come to this..........
Post by superhawk2300 on Sep 28th, 2008 at 8:42pm
Thanks man. Yeah some rest though I admit I've stayed up til 3am th last few nights just to be sure  ;)

Tonight I will try to go to bed at the regular time to see what happens.

I am grateful to Nani for pointing out melatonin to me. I feel a little better having a bottle of that around this time around too.

Title: Re: Well, its come to this..........
Post by Just Plain Carl on Oct 21st, 2008 at 6:36pm
Sorry to hear about your current ordeal.
  I was pain free for six years and the mutha came back to pay me a visit.  I was plenty pissed off, but it didn't take too long too settle in and deal with it.  Over the years, after being angry and feelin sorry for myself, I've learned that the calmer I am the easier it is to deal with.
 Just keep tellin myself that it will soon be gone.
 Hang in there.  Hope you beat the bastard back soon.
                              JPC

Title: Re: Well, its come to this..........
Post by MaxPayne on Oct 22nd, 2008 at 2:48am
Mine used to be regular for 6 years. Every spring from around april to june. last cycles has had about 18 months between them. Last time I got it in winter, and now I have it during fall. It's been a bitch, started early september, had a increase in intensity and frequency last week. Started declining couple of days ago, and now, no more evening shadows.

Tapered down from 6 hits a night to only two k6's last night. Things are definetly looking up. Not taking anything for granted yet. One time it went away for a week and I though I was done, but then the beast came back and stayed for another two weeks (Must've taken a short vacation or something).

If I am done now I am going to credit it to not taking any meds. My usual cycle is 12 weeks, and if I am done in a week or so, I will have gone 8 weeks this time thus cutting of 4 weeks:-)

What I find help relieve the shadows and the smaller hits, is doing push ups at onset. It is also a great anger relief cause you feel you are fighting back somehow. Doing push ups has been my regime this time around. Been fighting off the bigger hits with caffeine, and that seems to shorten the lenght of some of the k8-10s

Title: Re: Well, its come to this..........
Post by sandie99 on Oct 22nd, 2008 at 4:54am
This is how I see it: venting is allowed. I wish PF times your way asap![smiley=hug.gif]

Sanna

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