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(Message started by: andy on Apr 14th, 2003, 7:30am)

Title: Daytime or nighttime???
Post by andy on Apr 14th, 2003, 7:30am
Do any of you get a cycle that starts durring the daytime?                                                                                                                                 I have always got CH at nite a couple hours after i fall asleep. I got only 1 CH a month ago to remind me that the beast was still lurking inside my head. I woke up with a Kip-8 at 3 am I killed it with o2 in about 15 minuts. I have had shadows since Kip-1-2 Untill last week. Now they are here everyday. I have been getting hit durring the daytime only, late afternoon 4-6 pm o2 works wonders when i can get to it right away! At least im able to sleep at nite. And im also able to get my work done durring the day! O2 rules!! Life is Good     (at least for now)I have had CH for 15 years. I am episodic after a 2 1/2 year remission.          PFDAN  Andy  

Title: Re: Daytime or nighttime???
Post by Mikey on Apr 14th, 2003, 7:39am
Andy, i get hit during the day all the time, and at night.

Chronic here.

Mikey,  ;D

Title: Re: Daytime or nighttime???
Post by Mark C on Apr 14th, 2003, 7:46am
All hours.

Title: Re: Daytime or nighttime???
Post by don on Apr 14th, 2003, 7:48am
Getting the attack is not the start of my cycle. My cycle starts with shadows and that overall sick feeling. I guess you would pretty much need to be awake to know that so the answer to your question is;

I become aware of an impending cycle during the day.

When I get hit it's day and night, daily and nightly. Every day, every night. No let up.

Title: Re: Daytime or nighttime???
Post by andy on Apr 14th, 2003, 8:07am
I think my clock is off 12 hours or so. I have almost always got hit at night. Only a couple of times have i got hit durring the daytime (which sucks cuz i am usually away from home on a jobsite or out in public) then i had to try to drive home before it got too bad. Pull off the road breathe some 02!!    By the time i would get home, it would be almost gone. Life really sucked then!!           If they continue to hit me late afternoons, i can deal with that as long as i got my 02. thanks all , Andy

Title: Re: Daytime or nighttime???
Post by Bob P on Apr 14th, 2003, 8:19am
1PM, 7PM and 1 1/2 hours after I go to sleep.  Interesting thing is even when I'm not in cycle, I wake up 1 1/2 hours after I go to sleep, look at the clock, and go back to sleep.

Title: Re: Daytime or nighttime???
Post by NotH20 on Apr 14th, 2003, 8:37am
Andy sorry to hear that your ch's have returned - but 2.5 years is one hell of a remission.  And I thought I had it good going about 1.5 years!

How long does your cycle last?  Mine lasts about 4 months.

It doesn't matter the time of day in my case - when in cycle I get hit both night and day.  I'm with the rest of group that get hit about 1.5-2 hours after going to sleep which is usually a doozie of a ch.

Hey BobP - when you look at the clock after 1.5 hours of sleep isn't there just a calming affect that comes over you for not being in the middle of a ch?  Now that is a feeling that I live for when in cycle.

Good luck Andy - hope you feel better soon,
Mia

Title: Re: Daytime or nighttime???
Post by andy on Apr 14th, 2003, 8:53am
My last remission was 5 years untill sept 2000. that cycle was over around thanksgiving ( 2 1/2 months or so) they usually hit at night at 3 am like clockwork! this time they are hitting me at 5 pm. Only 1 a day for now. These are not as bad because i can kick its ass with 02 at the first sign of an attack. Unlike waking up with a 10, banging my head, reach for the 02, and hope i get relief soon. Im dealing with this cycle much better this time. Thank you all for your help and support. PFDAN,    Andy                jonny, check your mail!!

Title: Re: Daytime or nighttime???
Post by Mastifflvr28 on Apr 14th, 2003, 9:36am
Andy,
I'm a once a year, 4 month duration episodic and I NEVER get hit during the day...BUT, I know the beast is really unpredictable so I take my imitrex with me everywhere.
My biggest fear is getting hit outside the house, with no meds.  My trex stays in my glove box all year round, in or out of cycle.
It's the first thing I grabbed out of my recked trooper after the tree fell on it...had to move the windshield a bit to get to it, LOL.
Take care,
Mast

Title: Re: Daytime or nighttime???
Post by Roxy on Apr 14th, 2003, 9:56am

on 04/14/03 at 07:46:27, Mark C wrote:
All hours.



......and chronic.

Title: Re: Daytime or nighttime???
Post by echo on Apr 14th, 2003, 10:34am
They can hit me at anytime of the day.  The beast seems to prefer 2am and 4am for some reason.  

I think sleep is overrated anyway.  I'm able to somewhat function on 2 or 3 hours of sleep with an occassional 20 minute power nap.

Title: Re: Daytime or nighttime???
Post by BruceD on Apr 14th, 2003, 11:52am
Mine used to be exclusively nocturnal but over the past 4-5 years they've gone to anytime ... day or night. However, the beast still seems to have a preference for 1:22 AM and 3:40 am. (And I meant to say 1:22, I can't even remember how many times I've awoke in the night and those stupid red clock digits were pegged at 1:22)

Later
BruceD

Title: Re: Daytime or nighttime???
Post by jonny on Apr 14th, 2003, 3:31pm
Mail is checked and answered, dude.

I know for sure its an aviation tank, ill know more tommorrow when I show my gas guy the pics. Aviation tanks are cool, the 02 goes through a drier before it goes in the tank. my bet is that there is no rust in the tank at all.

oh ya, I get hit day and night but more at night.

..............................jonny

Title: Re: Daytime or nighttime???
Post by eyes_afire on Apr 14th, 2003, 5:23pm
Prime time is very early morning hours.  During peak of cycle they will hit every 12 hours, so I'll get them during the daytime as well.  Nighttime ones are the most intense.

I somewhat agree with Bob P about waking up at 'cluster time' even if I don't have a CH.

I also agree with Bruce about the time being so exact... prime time was 4fucking40am until I recently started verapamil again.

I have to disagree with echo about sleep being over-rated  ;).... sheesh, 2 to 3 hours of sleep would get me a ticket to the ER... as a car crash victim.  If I don't get enough sleep at night, my body will force the issue sometime during the day.   :-[

Title: Re: Daytime or nighttime???
Post by andy on Apr 14th, 2003, 7:50pm
I got hit early today about 1pm. i felt it coming on as i was dealing with a very picky customer. I couldnt just go to my truck and start the o2. It would have looked wierd for me to go sit in my truck and freak out right ther in their driveway. So i stayed tough and rode it out. It wasnt that bad. I drank about 1/2 gallon of cold water right away. it only lasted 1/2 hour and i tried to stay busy to keep my mind off of it!! I guess that worked cuz im still here. This cycle is cake compared to my last one, at least so far!!                                        .Bruce, durring my laslt cycle, i would wake up at exactly at 3:11 am for a week strait. Thats wierd!!                      ...........................................................Jonny, thanks dude, you are the man!!!    Thanks all , Andy

Title: Re: Daytime or nighttime???
Post by raoelec on Apr 14th, 2003, 8:34pm
Just started a cycle with the beast, and as with you am getting them about 6:00-7:00 p.m. Can sure handle that time but I am also pretty sure that this is the beginning of a real HELL. Been in remission for about two years, and thank God it lasted that long.  Good luck with your time slot... :)

Title: Re: Daytime or nighttime???
Post by catlind on Apr 15th, 2003, 11:43am
Well I have set times, and unset times.  For me, it doesn't matter what time I go to sleep, about 1-2 hours after I'm awake again.  Hence me not sleeping at all...you're right echo, sleep is overrated ;) Think my record is 72 hours with 3 hours sleep. Fear is a powerful motivator. Other than that, I get hit at 4:30 a.m. and then some daytime ones that are around the same time every day, but not the exact time.  4 p.m. is a big one, and 9 p.m.  Some days I'll get a morning visit around 10 a.m.  The worst of all of them is by far the 4:30 a.m. one.  

Cat

Title: Re: Daytime or nighttime???
Post by andy on Apr 15th, 2003, 2:04pm
        Well , i finally got hit at nite!  Last nite! 2 times!  10pm kip 7 aborted by o2 in 15 minutes.  Then the big one ive been dreading for so long hit at 3:30 am. kip 10, woke me out of a dead sleep. panic, sceam, bang head, grab o2. (which didnt really work  that well  this time) after an hour of hell it finally subsided to my usual kip 3      I woke up this morning feeling like crap! scared and depressed!! But the good thing is that ive been painfree all day and i got my job done!!                                                                                                                               Hey jonny, thanks for your help, im going to take the regulator off that tank and see if i can rig it up to one of my other tanks. ill let you know my progress.                        Thanks everybody for being here for me!!!                            ...........Andy

Title: Re: Daytime or nighttime???
Post by ozzman on Apr 15th, 2003, 3:42pm
Andy,

I usually start my cycle with the 3:00 AM banger followed by an early morning one - 2 a day. Then I progress to 3 and 4 maybe even 5.

I now know, looking back at previous cycles that once I hit the BIG ONE, that is a K10 that doesn't go away with one Imitrex and then 2 hours later (Or less, depending on the tolerance that day) when I take a second dose of trex and STILL doesn't go away, I know I've reached the very peak and it is downhill from there (frequency, intensity and duration go down).

Funny thing is that I appreciate the clock work of my CHs, but this reliability stops once the Prednisone kicks in, then they become unpredictable, mostly evenly spaced but they shift forward or backward an hour or two every day or so.

So, dude you may have hit the "peak", it's all downhill from here..

PFDAN Ozzy

PS. I usually have long pain free periods as well

Title: Re: Daytime or nighttime???
Post by 9erfan on Apr 15th, 2003, 5:19pm

on 04/14/03 at 09:56:35, Roxy wrote:
......and chronic.



Me too, unfortunately.  >:(



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