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Title: AGAIN????? AT NIGHT???? Help ME!!! Post by toddlouky on May 13th, 2006, 6:30am 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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Title: Re: AGAIN????? AT NIGHT???? Help ME!!! Post by LeLimey on May 13th, 2006, 6:56am 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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Title: Re: AGAIN????? AT NIGHT???? Help ME!!! Post by E-Double on May 13th, 2006, 7:12am 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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Title: Re: AGAIN????? AT NIGHT???? Help ME!!! Post by toddlouky on May 13th, 2006, 7:27am 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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Title: Re: AGAIN????? AT NIGHT???? Help ME!!! Post by LeLimey on May 13th, 2006, 7:46am 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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Title: Re: AGAIN????? AT NIGHT???? Help ME!!! Post by chewy on May 13th, 2006, 10:52am Quote:
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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Title: Re: AGAIN????? AT NIGHT???? Help ME!!! Post by BlueMeanie on May 13th, 2006, 11:41am 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 05/13/06 at 07:12:58, E-Double wrote:
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 05/13/06 at 10:52:09, chewy wrote:
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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Title: Re: AGAIN????? AT NIGHT???? Help ME!!! Post by chewy on May 13th, 2006, 11:52am Quote:
Me niether but I'm in my 4th year of remission and still stick around to help others. Quote:
Would you still feel that way fif you came for support and no one was here? Doubt it. |
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Title: Re: AGAIN????? AT NIGHT???? Help ME!!! Post by Linda_Howell on May 13th, 2006, 12:51pm 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:
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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Title: Re: AGAIN????? AT NIGHT???? Help ME!!! Post by Garys_Girl on May 13th, 2006, 1:41pm 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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Title: Re: AGAIN????? AT NIGHT???? Help ME!!! Post by D_Robinson on May 13th, 2006, 7:11pm 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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Title: Re: AGAIN????? AT NIGHT???? Help ME!!! Post by unsolved1 on May 13th, 2006, 8:47pm 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'. [smiley=smokin.gif] UNsolved |
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Title: Re: AGAIN????? AT NIGHT???? Help ME!!! Post by D_Robinson on May 13th, 2006, 10:15pm 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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Title: Re: AGAIN????? AT NIGHT???? Help ME!!! Post by LeLimey on May 14th, 2006, 6:31am 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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Title: Re: AGAIN????? AT NIGHT???? Help ME!!! Post by toddlouky on May 15th, 2006, 11:11pm 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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Title: Re: AGAIN????? AT NIGHT???? Help ME!!! Post by mynm156 on May 16th, 2006, 12:22am 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! GOOD VIBES!! Your Brother in Pain MYNM156 |
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Title: Re: AGAIN????? AT NIGHT???? Help ME!!! Post by D_Robinson on May 16th, 2006, 1:27am 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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Title: Re: AGAIN????? AT NIGHT???? Help ME!!! Post by chewy on May 16th, 2006, 7:06am Quote:
LMAO. I learned nothing from the previous 26 years. |
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Title: Re: AGAIN????? AT NIGHT???? Help ME!!! Post by Bob P on May 16th, 2006, 8:42am Quote:
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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Title: Re: AGAIN????? AT NIGHT???? Help ME!!! Post by Linda_Howell on May 16th, 2006, 11:30am Quote:
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. ;;D Linda |
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Title: Re: AGAIN????? AT NIGHT???? Help ME!!! Post by toddlouky on May 16th, 2006, 1:07pm 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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Title: Re: AGAIN????? AT NIGHT???? Help ME!!! Post by Kevin_M on May 16th, 2006, 1:56pm on 05/15/06 at 23:11:51, toddlouky wrote:
on 05/16/06 at 13:07:52, toddlouky wrote:
Then it would be a good idea to not throw out barbs and be so judgmental yourself. on 05/15/06 at 23:11:51, toddlouky wrote:
Because sometimes opinions are mentioned which may not seem compatible with others. on 05/13/06 at 06:30:28, toddlouky wrote:
A lot can be agreed upon though. |
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Title: Re: AGAIN????? AT NIGHT???? Help ME!!! Post by chewy on May 16th, 2006, 2:37pm Quote:
Thats what the parole board said to! Quote:
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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Title: Re: AGAIN????? AT NIGHT???? Help ME!!! Post by Bob P on May 16th, 2006, 3:03pm Quote:
It's because you're an old fart (like Charlie) now! |
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Title: Re: AGAIN????? AT NIGHT???? Help ME!!! Post by Charlotte on May 16th, 2006, 3:10pm I'm one of the non-smokers. I do have an addictive personality though. Charlotte How old are you, Chewy? |
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Title: Re: AGAIN????? AT NIGHT???? Help ME!!! Post by Redd715 on May 16th, 2006, 3:34pm I can only comment on what my experience has been, and what both I and my headache specialist believe was the catalist to the mutation of my CH two years ago. I was a chronic Chead for many years prior to this mutation, but had gone misdiagnosed for various reasons. Attacks hit at night 99.9% of the time with only the rouge daytime attack. Some nights I attributed it to the "allergy attacks" I was misdiagnosed with, and some nights when the pain hit down into my teeth I blamed the braces I had worn as a young adult that they said would take care of the "TMJ headaches". However, Feb. of '03 I decided to quit smoking, after many many years of a 1-1.5 pack a day addiction. Went to a hypnosis/guided imagry seminar on 2-16-03, and oddly enough, it was a success. I stopped smoking cold turkey, and it wasn't hard at all. I felt a few pangs of withdrawl, but nothing I couldn't fight off easily enough. Had been having my usual nightly attacks for a week or so, and then the morning of March 8th, just as I was opening the door to leave for work at 7 am I got hit (for me) out of the blue. Called into work after it subsided and said I'd be in that afternoon, I needed to recoop a bit. Hit again 11 am. called work again and told them I would have to be in the next day, headaches weren't letting up, but thought a nights sleep would have me ok by morning. Then 3pm, then 7pm. Went to bed early, had the usual 1 am hit I was used to. But the next morning once again at 7am.... When I called work on the second day I was scared, but I kept as calm as I could, and stated that if this didn't pass by the following morning I would go in to see a doctor. Needless to say it didn't. (during this time I started smoking again due to stress and fear when I had a 5 day wait for the MRI to rule out brain tumor) I won't go into alot of the details, but suffice it to say I ended up getting correctly Dx, and with discussions with my Headache Specialist, she and I resolved that my quitting smoking ubruptly as I did effected the seritonin and other neurotransmitter levels to cause a mutation in the way CH manifested from this point. Can it be a fact this is what happened? No way to know for sure. Is it a valid arguement? I'd have to say yes with what we know about the link to the hypothalamus, seritonin and CH. My 2 cents Pegg |
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Title: Re: AGAIN????? AT NIGHT???? Help ME!!! Post by chewy on May 16th, 2006, 3:46pm Quote:
I'm 48. 30 years younger than Bob P. |
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Title: Re: AGAIN????? AT NIGHT???? Help ME!!! Post by Charlotte on May 16th, 2006, 4:00pm Thanks, Chewy. So, Redd, did it look like quitting smoking kicked you into high gear? Did it change from chronic or episodic or just kick in? I always tell people not to quit smoking, but it's just because they are so bitchy when they do. Charlotte |
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Title: Re: AGAIN????? AT NIGHT???? Help ME!!! Post by Redd715 on May 16th, 2006, 5:08pm on 05/16/06 at 16:00:31, Charlotte wrote:
Always Chronic from the criteria, just misdiagnosed as anything from allergy attacks (supposedly mold, my ex husband worked at the waste water treatment plant and came home covered in mold daily, too bad none of the script allergy meds ever worked, wonder why >:( ) to TMJ to something the Doc refered to as Massive Migraine (whatever the heck that is supposed to be). |
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Title: Re: AGAIN????? AT NIGHT???? Help ME!!! Post by Bob P on May 16th, 2006, 5:20pm Quote:
I'm so freakin' old, I only figured out last week that Chewy is Don! |
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Title: Re: AGAIN????? AT NIGHT???? Help ME!!! Post by E-Double on May 16th, 2006, 7:10pm OMG Pegg!!! That is very similar to what happened with me. With the exception of hypnosis and always being episodic but also un/misdiagnosed. Totally forgot that I was trying to quit |
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Title: Re: AGAIN????? AT NIGHT???? Help ME!!! Post by chewy on May 16th, 2006, 7:23pm Quote:
I read somewhere that years of sinus headaches will effect the memory. Sinus Buster bud. Sinus Buster! |
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Title: Re: AGAIN????? AT NIGHT???? Help ME!!! Post by Charlotte on May 16th, 2006, 7:52pm Getting older doesn't help ch but it sure beats the alternative. Charlotte |
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Title: Re: AGAIN????? AT NIGHT???? Help ME!!! Post by D_Robinson on May 16th, 2006, 11:52pm Red, I can see where quiting smoking can cause that Nicotine is a vasoconstrictor. Remvoing it too fast from your system would cause a problem If you think about vasoconstrictors, would there ever be an issue of abusing them when off cycle? Too much zomig, or even asprin can cause rebound headaches. Heck I am told coming off of caffiene can cuase reboudn headaches. I have been lucky since stopping smoking I have not had an issue with headaches related to stopping, but I was taking 2 zomig a day for hits, and that is probly why. I had enough vacoconstrictor in my system and then some. David |
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Title: Re: AGAIN????? AT NIGHT???? Help ME!!! Post by Bob P on May 17th, 2006, 7:55am I think Ueli put forth that cig smoke also contains CO. The CO binds to the red blood cells decreasing oxygen carrying ability. The vessels then dialate in an attempt to deliver more O2 to the brain. |
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Title: Re: AGAIN????? AT NIGHT???? Help ME!!! Post by danm on May 17th, 2006, 10:07am Never smoked a cigarette in my life but have had the nasty headaches (Episodic) for over 15 years now. I may have an addictive personality though.......love to booze and gamble. Dan |
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Title: Re: AGAIN????? AT NIGHT???? Help ME!!! Post by Redd715 on May 17th, 2006, 12:42pm Quote:
Quote:
I can logically see where these scenarios could cause innitial withdrawl headaches in the first few days to a week, and if I had them I couldn't tell you. Having had CH for so many years prior to this, they are the only headaches I recognise that stop me in my tracks. The mutation of my CH pattern began almost a month after I quit smoking. Therein lays the foundation of the seritonin theory. Having studied psychology and the effects of different drugs on brain chemistry, etc. it is the most viable theory. We know that most anti-depressant medications (drugs that work on the seritonin levels, SSRI's etc.) take anywhere from 2 weeks to 2 months to gain therapudic levels in the system. Therefore removing a drug from one's system that effects seritonin levels would likely create the same effect only in reverse. |
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Title: Re: AGAIN????? AT NIGHT???? Help ME!!! Post by BarbaraD on May 18th, 2006, 5:29am on 05/16/06 at 15:10:39, Charlotte wrote:
In doggie years he's 240.... |
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Title: Re: AGAIN????? AT NIGHT???? Help ME!!! Post by Charlotte on May 19th, 2006, 2:13pm So should I start smoking? Anyway, I read some stupid theory a few years ago about serotonin and got the idea that if I ate two soda crackers every 20 minutes, it would keep my serotonin level level and i would be headache free. lololol. rotfalmao. I did it for awhile and ended up stuffing a whole box of soda crackers in my mouth at one sitting. Did not help the ch a bit. Charlotte |
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Title: Re: AGAIN????? AT NIGHT???? Help ME!!! Post by thebbz on May 19th, 2006, 7:15pm ;;D Quote:
No Char please dont. I can see Bob fartin dust now. I smoked for 30 years. I have had CH for 27. Last year I quit smoking not for the fear of CH but for the fear of the trex. :P It has not helped the CH at all that I can say. It sure was time and the right thing to do though. I feel that due to the fact I came here, got information and help, (not to mention some of the best friends one could ask for) I am also required to help others in return. But thats just me ..I dont know about anyone else. I am glad I lurked for two years and read the information first before I spouted off and threw hand grenades at good people. all the best jb |
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