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Topic: AGAIN????? AT NIGHT???? Help ME!!! (Read 1289 times) |
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toddlouky
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AGAIN????? AT NIGHT???? Help ME!!!
« on: May 13th, 2006, 6:30am » |
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You go almost a year with not a single headache, then that day comes, a couple of 2's, next day a couple of 4's. At this point you know, the beast has returned. And then the next day the 6's, 7's.
New to me however, is waking up at 5 every morning with a stinger. My past cycles have been this: 1 PM hell, 11 PM hell. THIS Cycle is this: 1 PM HELL, 11 PM HELL, and NOW 5 AM HELL.
My question for everyone is this: I have an appt with my gen practicioner on Monday. Will he prescribe me O2? To be honest, for last few years I have coped without meds, but this time around the intensity is over that pain threshold, plus I get 3 a day instead of 2.
I apologize for I only come here during cycles. It seems I have only 1 cycle a year anymore, and its always starting in May. I wish I could say I was here during remissions to support others, but life is so busy.
God please give all of us relief from this horrible affliction.
Does anyone know of people that have quit smoking resulting in longer remissions or even cured????? I keep reading that almost all CH sufferers are smokers, so I cant help but wonder if this is the culprit of my demise.
May we all get some relief from CH. I wish all the best.
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LeLimey
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Re: AGAIN????? AT NIGHT???? Help ME!!!
« Reply #1 on: May 13th, 2006, 6:56am » |
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I think you'll find it closer to 50/50 ch'ers are smokers - I have never smoked so I'm just bloody unlucky!
Quitting smoking can only do you good but it won't impact on your CH one way or another.. you're general health will love you though!
Print off the info regarding O2 to take to your doctor and push for it - for me there is no better abortive.
Take care, let us know how you get on and I hope your cycle is a short one
Helen
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E-Double
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Re: AGAIN????? AT NIGHT???? Help ME!!!
« Reply #2 on: May 13th, 2006, 7:12am » |
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I went through 18 (un/misdiagnosed) cycles without medication.
I then got diagnosed and was put on meds.
2yrs later without a break in cycle I decided to detox and feel a lot better. The attacks are easier for me to deal with these days.
If I were to use meds again, I would probably use an abortive over a preventative. That may go against what some others will tell you but I think that is what I might do. We're all different thus our bodies respond differently.
Oxygen is still kick ass so get it!! Demand it!!!!!
I am also a huge fan of zyprexa to abort.
Since you are having wake up calls, you might want to look into melatonin. 6-12 mg about 30 minutes prior to attempting sleep has helped many take back their nights.
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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toddlouky
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Re: AGAIN????? AT NIGHT???? Help ME!!!
« Reply #3 on: May 13th, 2006, 7:27am » |
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Thanks for the quick responses guys. This site amazes me everytime "the time" comes.
Ive just been reading about Kudzu, and based on what I see Im about to purchase some off vitameds.com. In the past my cycles havent lasted too longs, 3-4 weeks.
50/50 smokers still seems astonishing. Clearly there is a link between smoking and CH. Maybe one day a scientific link will be discovered and we can sue the shit out the tobacco companies, haha, talk about a class action.
Im going to demand the 02 and try kudzu. All the preventatives and what not seem extreme for me, as despite all the pain, Ive maintained a normal life. I just plan on down time for 3 hours a day now.
Im only up right now because I got my first sleep hit. I popped 3 excedrins, drank a cup of coffee, and it helped, but here I am probably up for the rest of day with little sleep. Such is the life of CH.
Kudzu and O2, we will see, and Ill be sure to post my results.
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LeLimey
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Re: AGAIN????? AT NIGHT???? Help ME!!!
« Reply #4 on: May 13th, 2006, 7:46am » |
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Todd I don't think you'll get far with a link between smoking and CH. CH is caused by a dodgy hypothalamus - a gland in your brain. I think it's BobP who has a theory that its to do with addictive personalities rather than actual smoking or drinking alcohol.
I've never smoked, my four year old who is also a ch'er isn't a smoker either! I could sit and name several other non smokers (and several who smoke like chimneys too!) I wish, I really, REALLY wish it was as simple as that.
BTW Eric's advice re melatonin is spot on, I tend to forget about that since it's not available here but read this site about it, its written by a ch'er.
http://www.med-owl.com/clusterheadaches/tiki-index.php?page=Melatonin
Take care
Helen
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chewy
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Re: AGAIN????? AT NIGHT???? Help ME!!!
« Reply #5 on: May 13th, 2006, 10:52am » |
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Quote:Thanks for the quick responses guys. This site amazes me everytime "the time" comes.
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What amazes me are the self centered people who come here in cycle, suck up all the support they can get and then leave.
Quote:
You think it's not for others?
Good luck with the O2.
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BlueMeanie
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Re: AGAIN????? AT NIGHT???? Help ME!!!
« Reply #6 on: May 13th, 2006, 11:41am » |
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Hi Todd, Welcome back to Clusterville.
My CH's started out alot like yours. Only got hit at 9AM & 9PM for the first few years. Eventually the wake-up calls came. As EE said Melatonin works good for lots of peeps to get you through the night.
on May 13th, 2006, 7:12am, E-Double wrote:| If I were to use meds again, I would probably use an abortive over a preventative. That may go against what some others will tell you but I think that is what I might do. |
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I agree EE, my cycles last longer with prevents and they never worked anyways, but that's just me. Some people swear by them. If it helps go for it.
on May 13th, 2006, 10:52am, chewy wrote:| What amazes me are the self centered people who come here in cycle, suck up all the support they can get and then leave. |
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Where in the rule book does it say you must be a lifer here ? Some episodics don't want nothing to do with CH's when it's over. I personally don't blame them a bit.
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chewy
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Re: AGAIN????? AT NIGHT???? Help ME!!!
« Reply #7 on: May 13th, 2006, 11:52am » |
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Quote:| Some episodics don't want nothing to do with CH's when it's over. |
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Me niether but I'm in my 4th year of remission and still stick around to help others.
Quote:| I personally don't blame them a bit. |
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Would you still feel that way fif you came for support and no one was here? Doubt it.
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Linda_Howell
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Re: AGAIN????? AT NIGHT???? Help ME!!!
« Reply #8 on: May 13th, 2006, 12:51pm » |
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Charlie hasn't had a Cluster Headache for 12 years now. But he's here everyday adding his wit and wisdom for those of us who need it. Myself incuded.
No. There is no rule that says you have to be here when you don't need us, but it sure would be nice if you stuck around...for the rest of us.
Quote:| Clearly there is a link between smoking and CH. |
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The only link you're going to find, and it's an "IFFY" one...is that sufferers seem to have addictive tendancies. LOTS of people and CHILDREN have CH and do not, nor ever have...smoked.
Linda
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Garys_Girl
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Re: AGAIN????? AT NIGHT???? Help ME!!!
« Reply #9 on: May 13th, 2006, 1:41pm » |
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Actually, the bigger link is between CH and sleep apnea. Apparently approximately 85% of people who suffer from Ch also suffer from sleep apnea.
I don't know if the treatment of sleep apnea (for those who suffer from that as well) has broken anyone's CH cycle.
I do know hubby has sleep apnea, but has such trouble with sleep to begin with (and phobias about sleeping anywhere other than his own bed - if we have to travel, if we're only in a hotel for a few nights, he pretty much doesn't sleep), he won't go to a sleep center to deal with the sleep apnea - which is a very serious condition, that dramatically increases one's chance of a stroke.
Laurie
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Laurie
"It's comin' like a freight train - can't you hear it?" - Gary
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D_Robinson
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Re: AGAIN????? AT NIGHT???? Help ME!!!
« Reply #10 on: May 13th, 2006, 7:11pm » |
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Todd,
I may have an answer for you in the next 32+ months. I quit smoking mid cycle this time. Every cycle prior smoking was never a trigger for a CH for me and well it would help since the nicotine would help constrict blood vessles, and is a known vaso constrictor just like caffiene is. One really nasty CH midday while waiting for the Zomig to kick in I am pacing the warehouse pounding coffee and lit up a cigarette and well after 3 puffs it was like pouring gasoline on a fire which was my CH. The pain just went from bad to insane. I have not smoked since. I am not saying it would work for you, but I think it will work for me, but I am pretty sure my first cycle was smoking related, and me being stupid kept smoking for 16 years past it.
I made a couple changes to my diet eleminating aspartine in 1999 and well my remission period went from 15 month slowly to the last one was 32 months. Acholol was a trigger for regular headache for me and apartine has wood acholol in it. Maybe I am being stupid for thinking a few changes in how I take care of myself will help, but I am going to try. 32 months of remission was just not long enough for me. Its seems the longer the remission period the wimpier I end up getting pain wise.
David
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unsolved1
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Re: AGAIN????? AT NIGHT???? Help ME!!!
« Reply #11 on: May 13th, 2006, 8:47pm » |
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I smoked for years with episodic clusters. Then after my 2nd year of being chronic, I quit smoking for a whole year. The cluster attacks did not change for the better or for the worse. I had multiple attacks daily that continues today. BTW, I started smoking again in 03'. 
UNsolved
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D_Robinson
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Re: AGAIN????? AT NIGHT???? Help ME!!!
« Reply #12 on: May 13th, 2006, 10:15pm » |
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Again everyone is different. some people this med works for some that, some nothing really works for them. The one constant seems to be everyone's body deals with CHs differently. Hey I may be wrong and next month I may start another cycle and I can say well whehter I smoke or not has nothing to do with it, but I do feel what I am putting into my body may relate to the problems I am having and well my intake of caffiene was pretty high and I smoked a pack and a half to 2 packs a day. Since both nicotine and caffiene constrict blood vessels, I think they may be some relation to my problem at least. Also the first cycle I had was during a time I was officing with 2 other guys both who smoked 3 packs a day and we had a smoking office.
Again I may be all wet here and in time will find out. I feel it is worth trying since I have nothing to loose, smoking is extremely expensive now, it is not healthy, and since the last experience I had with them, well when I have been in a closed area with someone smoking I tend to get a headache, not a biggie, but one none the less.
Will it work for everyone, I bet not since medication wise nothing works for everyone, and I am not sure it will work for me, but I want to find out myself.
David
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LeLimey
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Re: AGAIN????? AT NIGHT???? Help ME!!!
« Reply #13 on: May 14th, 2006, 6:31am » |
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David good luck to you! If you don't try you'll never know and if it helps you then all to the good. As you say what works for one doesn't work for another, just bear in mind though that all the abortives we use - or practically all I should say - work by constricting the blood vessels and thus reducing pain. Thats why caffeine works so well for ch'ers, the blood vessels in our brains can expand by up to 20 times their normal size which is what causes the excruciating pain.
Let us know how you get on okay?
Helen
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toddlouky
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Re: AGAIN????? AT NIGHT???? Help ME!!!
« Reply #14 on: May 15th, 2006, 11:11pm » |
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Wow. Chewie, 4 years of remission? Thats amazing. I pray one day I can achieve that. Being that you are VERY knew to this site and havent had a cluster attack in 4 years, I doubt your advice is worth reading anyway.
Perhaps you missed the part where I apologized. Anyhow, the addictive personality thing seems intriguing to me. But the only thing Im addicted to is nicotine. So with that in mind, again, the coorelation is obvious to me as far as smoking.
Its time I quit. It will kill me one way or another if I dont, and quitting may break the "addictive mechanism" that people thoerize plays a role in CH.
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mynm156
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Re: AGAIN????? AT NIGHT???? Help ME!!!
« Reply #15 on: May 16th, 2006, 12:22am » |
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My opinion is there is NO CURE for this. It comes when it comes and IF it leaces it leaves when it leaves. I have been on just about EVERY medication EVER tried for this including 02 and I can ONLY hope to contain the Beast. He will have his will with me IF I am lucky I can hold a line and live to fight another day.
I think that if your PCP is aware of your condition then there is probably no issue with getting O2. IF there is FIGHT him! FIRE him if you have to dont take NO for an answer!
Your Brother in Pain
MYNM156
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D_Robinson
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Re: AGAIN????? AT NIGHT???? Help ME!!!
« Reply #16 on: May 16th, 2006, 1:27am » |
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Well I am not sure I would say someones long remission is a reason to listen or not to listen to them. I went 32 months this last remission prior to starting 4 days before my birthday. Maybe Chewy is just living right, and then again who knows. Mine went for 15 months like clock work for almost 10 years then went to 18 then 22 then 32 months. I am just trying to figure out how to make it longer remission wise.
Quiting smoking cannot hurt you. I stopped since I felt it was something that would ultimately lengthen my remission time. Whether or not it would help anyone else who knows? I am not even sure if it will help me lengthen my remission, but without trying it, I will never know.
David
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chewy
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Re: AGAIN????? AT NIGHT???? Help ME!!!
« Reply #17 on: May 16th, 2006, 7:06am » |
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Quote:| Being that you are VERY knew to this site and havent had a cluster attack in 4 years, I doubt your advice is worth reading anyway. |
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LMAO. I learned nothing from the previous 26 years.
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| « Last Edit: May 16th, 2006, 7:07am by chewy » |
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Bob P
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Re: AGAIN????? AT NIGHT???? Help ME!!!
« Reply #18 on: May 16th, 2006, 8:42am » |
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Quote:| Clearly there is a link between smoking and CH. |
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Since there are a lot of smokers who don't have clusters, it's hard to say smoking causes clusters
but
Here's my theory:
It's obvious that clusterheads smoke and drink more than the general population.
Since ch is linked to the hypothalamus
and the hypothalamus controls the release of many neurotransmitters
and psychologists are using neurotransmitters to treat addiction
maybe, just maybe the disfunction of the hypothalamus causes us to also have addictive personalities.
In other words, smoking doesn't cause ch but what causes us to have ch also causes us to smoke.
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| « Last Edit: May 16th, 2006, 9:55am by Bob P » |
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Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
"SHUT UP HUB!"
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Linda_Howell
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Re: AGAIN????? AT NIGHT???? Help ME!!!
« Reply #19 on: May 16th, 2006, 11:30am » |
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Quote:| Being that you are VERY knew to this site |
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Ah., um ...what gave you the impression that Chewy is KNEW to this site? He has been here for many years.
I KNEW him when. 
Linda
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toddlouky
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Re: AGAIN????? AT NIGHT???? Help ME!!!
« Reply #20 on: May 16th, 2006, 1:07pm » |
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Well it says he registered in 2005 to the site.
I just find it sad, that he would reply to my original post insulting me calling me selfish. This guy obviously has issues other than CH. Anyway, Im not on here to battle with some judgemental holier than now prick.
Thanks for your ideas guys.
BTW, I started this morning the following regiment: Taurine and Indocin. So far today not my normal 1 oclock hit but we will see.
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Kevin_M
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Re: AGAIN????? AT NIGHT???? Help ME!!!
« Reply #21 on: May 16th, 2006, 1:56pm » |
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on May 15th, 2006, 11:11pm, toddlouky wrote:| I doubt your advice is worth reading anyway. |
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on May 16th, 2006, 1:07pm, toddlouky wrote: Anyway, Im not on here to battle with some judgemental holier than now prick.
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Then it would be a good idea to not throw out barbs and be so judgmental yourself.
on May 15th, 2006, 11:11pm, toddlouky wrote:So with that in mind, again, the coorelation is obvious to me as far as smoking.
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Because sometimes opinions are mentioned which may not seem compatible with others.
on May 13th, 2006, 6:30am, toddlouky wrote:| May we all get some relief from CH. I wish all the best. |
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A lot can be agreed upon though.
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chewy
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Re: AGAIN????? AT NIGHT???? Help ME!!!
« Reply #22 on: May 16th, 2006, 2:37pm » |
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Quote:| This guy obviously has issues other than CH |
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Thats what the parole board said to!
Quote:| Maybe Chewy is just living right, |
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Uhhh. Thanks but I kind of doubt that is the reason for the remission. My life style is comparable to a 14th century viking on crack.
I dont know the reason really. Still get hits but no cycles in 4 years.
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| « Last Edit: May 16th, 2006, 2:42pm by chewy » |
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Bob P
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Re: AGAIN????? AT NIGHT???? Help ME!!!
« Reply #23 on: May 16th, 2006, 3:03pm » |
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Quote:| I dont know the reason really. |
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It's because you're an old fart (like Charlie) now!
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Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
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Charlotte
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Re: AGAIN????? AT NIGHT???? Help ME!!!
« Reply #24 on: May 16th, 2006, 3:10pm » |
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I'm one of the non-smokers.
I do have an addictive personality though.
Charlotte
How old are you, Chewy?
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| « Last Edit: May 16th, 2006, 3:11pm by Charlotte » |
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