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        New Message Board Archives >> 2004 Cluster Headache Specific Posts >> How many total CH days so far?
        
(Message started by: KarynG on Feb 10^th, 2004, 10:55am)

Title: How many total CH days so far?
Post by KarynG on Feb 10^th, 2004, 10:55am

Okay, maybe I have TOO much time on my hands and maybe someone has done this before, but I was wondering approximately how much time we have each spent with the beast. Obviously, this is not a scientific study and it won't be exact or specify shadow days vs. really bad days. It is just interesting to me and like I said, it is a slow day around here!

For me:

2003 September - December 12 weeks=84 days
2002 July - November 16 weeks=112 days
2001 August - September 6 weeks=42 days
2000 June - July 6 weeks=42 days
1999 March - April 6 weeks=42 days
1998 Pregnant 0 0
1997 July - August 6 weeks=42 days

The beast owes me around 392 days or so, but I'd call it even at a year!
;;D
Karyn - Sorry, I couldn't make it line up once I posted it!

Title: Re: How many total CH days so far?
Post by thomas on Feb 10^th, 2004, 11:02am

AAAAALLLLLLLLL RIIIIIIIIIGGGGGGHHHHHHHTTTTT!!!!!!!!! A KarynG post.... I don't keep track of my cycles.... so I can't help, sorry :( But roughly about 2.5 years..........

Title: Re: How many total CH days so far?
Post by dodie on Feb 10^th, 2004, 12:25pm

I would like to be able to help but .......
when the cycle started I would go to the Dr. and get prednisone to break the cycle.
This time I had been on pred. 2 times for 1 week each, and it didnt work.
so far Im at 3 weeks down and out, I will try to keep track for you and report.
dodie ( new bee )

Title: Re: How many total CH days so far?
Post by brain_cramps on Feb 10^th, 2004, 12:30pm

i'm not betting but i think that jonny will "win" this one.

grant

Title: Re: How many total CH days so far?
Post by J.ten_Dam on Feb 10^th, 2004, 12:37pm

this question is obviusly meant for episodics [smiley=laugh.gif] so I wont let you know how many :-X
;;D

Title: Re: How many total CH days so far?
Post by BobG on Feb 10^th, 2004, 1:00pm

on 02/10/04 at 12:37:40, J.ten_Dam wrote:

this question is obviusly meant for episodics [smiley=laugh.gif] so I wont let you know how many :-X
;;D

Yeah, what she said.

It wouldn't be fair to compare chronics with episodics. The chronics would have more days total and win. Or would that be the chronics would lose.

I hate those chronics.

Title: Re: How many total CH days so far?
Post by 9erfan on Feb 10^th, 2004, 1:02pm

Yeah, you DO have too much time on your hands....

Title: Re: How many total CH days so far?
Post by UN_SOLVED on Feb 10^th, 2004, 2:23pm

I agree ... too much time ... lol

My current cycle started in October ... OF 2000 !! Who's gonna add that up ? This makes my...uhmm ... 15^th or 16^th cycle.

Start addin' !!!

UNSOLVED

Title: Re: How many total CH days so far?
Post by KarynG on Feb 10^th, 2004, 2:31pm

Thanks Thomas! I feel so welcomed! (Genuine, not sarcasm)

Okay, so the general consensus is...

I need a hobby?

Not a contest, not a study, just wondering on a slow afternoon...
:D

Title: Re: How many total CH days so far?
Post by bobkip on Feb 10^th, 2004, 2:41pm

Well lesee, about 23 days this cycle at an average of
2 1/2 a day times 5 minutes (yeah, the O2 is working that well) comes to about 300 minutes using fuzzy math divide by 60 = abot 5 hours so far. BUT when I was chronic it was every day, at least 1 and up to 8 times a day for 1 1/2 years so a conservative estimate would be 1800 hours. Chronic sucks.
Kip

Title: Re: How many total CH days so far?
Post by Linda_Howell on Feb 10^th, 2004, 4:31pm

hmmmm. Lemmee see.

17 years X 365 days X 5 per day=31025 ha's

I think I just made myself sick.........

Linda :o

Title: Re: How many total CH days so far?
Post by Charlie on Feb 10^th, 2004, 4:41pm

Hard to say but it would likely average out to close to twice a year for 4 or 5 weeks for 22 years (sometimes a third times for a week or so) Odd, I know.

Charlie

Title: Re: How many total CH days so far?
Post by echo on Feb 10^th, 2004, 5:19pm

I used to keep a journal -- but it depressed the hell out of me so I quit.

Now that I went chronic I really don't want to keep track.

Some day in the future I'll be in total remission. I'll be taking a dirt nap -- but I'll be in remission.

Title: Re: How many total CH days so far?
Post by BlueMeanie on Feb 10^th, 2004, 6:24pm

Way too many to count.

Title: Re: How many total CH days so far?
Post by t_h_b on Feb 10^th, 2004, 6:32pm

Approximately 1,400 days, 2,400 attacks.

Crap, I never really thought about that.

Title: Re: How many total CH days so far?
Post by Paigelle on Feb 10^th, 2004, 7:10pm

OMG! Karyn you do have too much time on your hands! Of course so do I, we do need hobbies!

I will have to do some calculating and I will let you know.

Paige

Title: Re: How many total CH days so far?
Post by vig on Feb 10^th, 2004, 9:36pm

probably easier just to say 'thousands'.....

Title: Re: How many total CH days so far?
Post by ClusterChuck on Feb 10^th, 2004, 10:10pm

Let me see ... Had CH for 26 years now, episodic, about 3 months every year, 3 to 6 hits a day, 'cept did have 5 years PF, chronic for the last 6 years, usually 1 or 2 hits a day, except about 2 months every year of 4 to 8 hits, except since July 2003, 5 to 12 hits a day, every day ... Ok let me think ... ummmm ...mumble, mumble, mumble, carry the 2, ahhh ... figgure, figgure, figgure, and carry the .. Um what was it I was suppose to carry? Kerap! Now I lost count ... Ummmm

Ummmm ....

Let me see ...

Where was I?

Ah, Karyn?

scroll down .....

Down ...

STFU !!!

Chuck

Title: Re: How many total CH days so far?
Post by KarynG on Feb 11^th, 2004, 7:29pm

Thanks everyone! It is really interesting to me how very different cycles can be and how strong we all are in dealing with this. Especially all the chronics.

Paige - I'm thinking scrapbooking or crank calling...

Linda H - Wow, I don't even know what to say except you must be an amazingly strong person and I hope something changes for you soon

Chuck - Joe and I haven't laughed out loud like that since... since... the last time we saw YOU! Of course we weren't laughing with you, but AT you... [smiley=laugh.gif]
I have to tell you that the picture you have of the "beast" rising up is disgusting... eeewww... accurate... but disgusting

On top of needing a hobby, my post was moved. I hang my head in shame. I'll get the hang of it eventually, but meanwhile you all have to suffer. Ha.
Karyn

Title: Re: How many total CH days so far?
Post by t_h_b on Feb 11^th, 2004, 8:19pm

Karyn, I think your post was moved because DJ thought it was worthy of jump-starting the new topic He created, not because it was in the wrong place!

Your post made me at least TRY to quantify what I've been through over the last few years. The fact that I'm still alive and functioning after all the CH attacks certainly does help my self-confidence about dealing with this in the future. Thanks.

Title: Re: How many total CH days so far?
Post by thomas on Feb 12^th, 2004, 8:48am

on 02/11/04 at 20:19:15, t_h_b wrote:

Karyn, I think your post was moved because DJ thought it was worthy of jump-starting the new topic He created, not because it was in the wrong place!

Bingo, and ditto.... ;;D

Title: Re: How many total CH days so far?
Post by HeartMom on Feb 12^th, 2004, 11:46am

New here!

I have been suffering for so long. After reading this site, I wonder if they are clusters. My eyes hurt, my sinuses get plugged up, ice helps, and pain killers don't. I have 3 little kids, and my husband is not all that understanding. I feel like I have abondened my family. Last night I went to bed at 6 without dinner. I got back up again at 8 and the kids were getting ready for bed. What can I do?? I am now at work and ready to burst into tears! I have read that clusters come and go throughout the day, I get one and it lasts all day. Then goes away when I sleep and comes back slowly through the day...by dinner time, I want to cry. What do you all think?

Thanks

Title: Re: How many total CH days so far?
Post by thomas on Feb 12^th, 2004, 11:54am

on 02/12/04 at 11:46:42, HeartMom wrote:

I'm no doctor, but it almost sounds like migraines to me...clusters wake you up from a dead sleep, it is IMPOSSIBLE to sleep one off.

Title: Re: How many total CH days so far?
Post by eyhavhedaches on Feb 12^th, 2004, 1:01pm

cycle begins in late november lasting till bigining or end of febuary. Sometimes cycle pattern changes, cycles will start in june and last till end of september usually three whole months of suffering. 3 to 4 attacks a day usually 5 to 6 days a week. Sometimes all seven days.

Title: Re: How many total CH days so far?
Post by Prense on Feb 12^th, 2004, 5:48pm

on 02/12/04 at 11:54:02, thomas wrote:

clusters wake you up from a dead sleep, it is IMPOSSIBLE to sleep one off.

No idea what kind of HA it may be, but I am not thinking CH...

Chris

Title: Re: How many total CH days so far?
Post by Sean_C on Feb 12^th, 2004, 10:38pm

Hi Karyn,

24 years worth is more than my fair share.....

I really feel bad for Linda that sucks....31K is alotta dancin in the dark sweety.

I was 10 years chronic.....lets put it 2 per day, that would cover all days with one or none to the peaks at six or better. So 10 x 365 x 2 = 7,300

Then somehow I managed a 3 year break for no reason and became Episodic for no apparent reason so
6 weeks with 4 per day 2 cycles per year for 11 years.
That makes 3693, for a close number of 10,996.

That sucks, I'm still young too. Aww fuck it whats another 20,000 give or take a hundred ;;D ;;D ;;D

PFDAN to all.

Sean

Title: ;;DRe: How many total CH days so far?
Post by Mikey on Feb 13^th, 2004, 3:20am

Lets see Karyn, you just had to open this one up didn't you!!!..LMAO!!

I started out episodic for about 4 years hit 2 times a year for about 3 months, and then went chronic for the past 6 years non stop, i can't remember my last PF day, with an average of around, i guess, lets see, ummm, well it's like this, then it was like that, and then it......well you know, don't you?.....i can't even begin to guess myself.....ooohhh fuck it!! i dunno........LOLOL [smiley=laugh.gif] [smiley=laugh.gif]

Mikey, ;;D

Title: Re: How many total CH days so far?
Post by denisebyrd on Feb 14^th, 2004, 11:03pm

Hi Karyn , They're right, it makesm a difference if you are episodic or chronic. Myself, I have never had a period of less than 9 days of pain free. I HAVE JUST ABOUT HAD IT!!! It is getting worse instead of better and I really appreciate hearingfrom the female of the species, because, I feel my headeaches do somewhat follow my menstual cycle. My neurologist tells me that is not so, but I am also the first female he has ever treated.Anyway, my point being, I feel that in females, it shoud be evaluated if ther is relevance to hormones. Please let me know how you are doing I feel for you.