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Title: WE NEED TO FIND A NEW NAME..... Post by Ree on Sep 17th, 2005, 9:00am FOR CLUSTER HEADACHE..... Holy Crap.... We are so sick of people saying "You are stressed"... "Yes I get those too"... "Take Excedrine Migraine"...etc etc... How can we get with the Head of Neurology USA... the World and find a new name for the condition that has nothing to do with headache at all.... My husband got hit 5 times in the past 24 hours and our close circle of friends and family STILL DONT FUCKEN GET IT.....YES REE SAID FUCKEN..... My daughter just said Im gonna get those and I'm gonna die.... we need some help...... where is that link to the explaination of Cluster....I need to make copies... love ree |
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Title: Re: WE NEED TO FIND A NEW NAME..... Post by nani on Sep 17th, 2005, 9:03am Personally, I say it's a neuro vascular pain disorder. hugs, nani |
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Title: Re: WE NEED TO FIND A NEW NAME..... Post by sandie99 on Sep 17th, 2005, 9:17am I use horton's neuralgia all the time. :) [smiley=hug.gif] Sanna |
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Title: Re: WE NEED TO FIND A NEW NAME..... Post by Jasmyn on Sep 17th, 2005, 9:55am Ree I'm so sorry but I'm just as pissed off. I know most people here say that a Kip 10 is not something we often get. I kept quiet but I just can't anymore. I've been literally crawling the floors and hitting my head screaming and crying like a mad woman the past 2 weeks or so sometimes getting hit just 2-3 hours apart. Yip, I wanna go to ER but there is no ER here. I don't have the luxury of O2 and my doc 600km away, across the border, said the limit on Imitrex is 2 refills(4 injections) a month. I am useless as a human being because not only am I exhausted and depressed but I cannot get meds to help me through because the docs here and in SA thinks of this as a HEADACHE! They keep on insisting that I try other HEADACHE meds that I've been on and that doesn't work. At least I can get verapamil on prescription and ergotamine on the black market(US AID meds sold here) but none of these abort an attack. They talk to me as if I'm a drug addict or stupid and unfortunately something happens during these attacks that affects my speech so maybe I sound like one. Svenn had really been a lifeline for me out here, encouraging me to carry on because there were days that I just wanted to give up. But because so many of you make it through this and also have at this stage to go through this gives me hope, that is why I stick like glue to the site when I can see again and when I am relatively painfree(because with so may hits the shadows becomes very intense) even if I just read and are too tired to write. Sorry to vent but I hate CH and I hate the name... Uhg! |
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Title: Re: WE NEED TO FIND A NEW NAME..... Post by eyes_afire on Sep 17th, 2005, 10:20am I don't know if this link is what you're talking about, but in my opinion, this is the best description of CH that I've found... written by Goadsby himself... they may only need to read the first 2 paragraphs: http://www.hospital-doctor.co.uk/hd_news/hd_news_article.asp?ID=2498&Section=Feature --- Steve |
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Title: Re: WE NEED TO FIND A NEW NAME..... Post by Ree on Sep 17th, 2005, 10:36am Jasmyn... you and Dave are in the same boat right now. I am so sorry for your pain. I think he is going to try the kudzu it seems as if we are desperate at this point to just get rid of the pain... Have YOU tried the Kudzu... THANKS FOR THE LINK STEVE AND DAVE SAYS HI.... WE MISS YOU AND THE PORCH SERENADE... everytime Breezy picks up her acustic... I think of you...lol What I need to know from you folks is does he have to go off other stuff... to use Kudzu? Can it be mixed with triptans? Can it be mixed with Neurontin...? Yes I have read the links but am limited to the information in my brains hard drive... I am not being a good supporter because of the exhaustion we are going through...last night he woke me up because he was going to use a third injection in less than 24 hours and I stopped him... they aren't working folks..... (((( but Im not whining. If anyone accuses me of whining I will hunt you down, find you and impress my wrath upon you. So watch it.))) .... love ree |
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Title: Re: WE NEED TO FIND A NEW NAME..... Post by Jonny on Sep 17th, 2005, 10:43am I dont know about Dave, Ree...but every time I have used Trex shots I ended up getting three times the HA's I would normally get. I will never use it again!! |
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Title: Re: WE NEED TO FIND A NEW NAME..... Post by don on Sep 17th, 2005, 10:48am Is Dave using the full injection? |
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Title: Re: WE NEED TO FIND A NEW NAME..... Post by Ree on Sep 17th, 2005, 10:52am I know that jonny... he hates imatrex too... he is just desperate. He hit kip 10 last night for sure because he has been handling the hits pretty much with the 02 and neurontin... Last night the O2 wouldnt work. and Jas... don't let anyone dictate the kip of your attacks... everyones pain threshold is different. To me every CH attack IS A KIP 10... because they shouldnt exist at all... I would never discount anyones pain. Be well Ree.. (((hoping to get through a day with my hubby being pain free just enough to enjoy...))) |
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Title: Re: WE NEED TO FIND A NEW NAME..... Post by Ree on Sep 17th, 2005, 11:40am yup.... he is using the full injection... because we watched a certain someone and a few of the others use 1/3 doses and that is extreme bull shit, they were also abusing the imatrex big time... and as jonny said getting hit and hit and hit......cutting down the dose takes away the half life the doc told dave...Dave can take meds to kill a horse usually... He needs the full strength dose he used one with an old exp date and it didnt work at all... we're at the end of the rope... one saving grace is when they get bad they usually peak and decline and go away.... ramblin ree |
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Title: Re: WE NEED TO FIND A NEW NAME..... Post by cootie on Sep 17th, 2005, 12:19pm I know EXACTLY what ya mean Ree.......anymore I explain them plain and simple.......they feel like amputation without sedation. Simple and to the point Pam PS: I agree about the trex.......last cycle Brad seem'd to panic and took more tabs then usual and was afraid of the shadows. He works in a noisey print shop and expected to do alot of measureing and fix stuff and keep the residient idiots from screwin up clients orders and he could handle thinkin he'd get hit cuz he is out of it a long time when he does. But he got hit right and left last cycle and didn't even follow a pattern. But he was takein as many as 4 to 5 tabs a day !!!! I think it gets rid of em but you just get MORE in the long run to deal with. He's not tried the shots yet but has em......he's never done em before so dunno how this will work out. He hates needles !!! This is a fucked up disease or whatever ya call it........such sudden pain !!!! Not fair !!!!!!! Can't beleive no one has come up with something better.......course guess they need to figure out how to cure the common cold FIRST !!!! :-/ |
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Title: Re: WE NEED TO FIND A NEW NAME..... Post by Opus on Sep 17th, 2005, 1:02pm on 09/17/05 at 11:40:03, Ree wrote:
For me 1/3 shot is the best, but everyone is different, the full shots took longer to work, but that maybe because I have little fat, and the full auto injector shots make a bubble of trex under my skin. 1/3 shots given with a insulin hypodermic work faster for me, and don't give me any of the pounding heart and flushed face side effects that I got with a full shot. I have used trex many times without getting anymore hits for the while day. We have to remember of course that everyone is different. For a new name for CH, all I can thin of is "Clustered Attack Syndrome" Syndrome is what any illness is caused that has no known cause, and no cure. The hit would be called "Cluster Attacks" The term headache has got to go. Opus/Paul |
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Title: Re: WE NEED TO FIND A NEW NAME..... Post by cootie on Sep 17th, 2005, 1:06pm I think headache comes from head hurts scenerio......well you know what I mean. Then all the other head pain afflictions are called headaches which does not do the REAL THING any justice. But seems to me your head doesn't ache......it friggin HURTS !!! Ramblin words Pam |
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Title: Re: WE NEED TO FIND A NEW NAME..... Post by yikes-another-one on Sep 17th, 2005, 1:10pm ;;D No matter the name, without a cast or visible sign of illness, we still feel guilty about not getting things donw, andmy mom will still say, "Take two aspirin and lie down if it's that bad." I need a big black marker and some posterboard, somehting I can carry around wiht me. "Brain Strike, be back in 40 minutes" something that buys enough time to pace and rock and cry and whine, and then when it disappears, you cna drop it and get right back to work. hahahahaha that will be the day. TJ |
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Title: Re: WE NEED TO FIND A NEW NAME..... Post by sandie99 on Sep 17th, 2005, 1:24pm on 09/17/05 at 09:55:56, Jasmyn wrote:
Jas........ [smiley=hug.gif] [smiley=hug.gif] [smiley=hug.gif] I'm so, so sorry the beast is giving you hard time right now... :'( (((((((((Vibes)))))))) You're not useless, you know. You're a great person! :) I do know how low ch attack can take... It's the darkest place to be. Nobody should face it alone, so I'm so glad that you've got support from Svenn! If there's something I can do to help you out, let me know asap, okay? :) [smiley=hug.gif] [smiley=hug.gif] [smiley=hug.gif] PF wishes, Sanna |
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Title: Re: WE NEED TO FIND A NEW NAME..... Post by cootie on Sep 17th, 2005, 1:37pm Oh wow Jas........seein how even the shit that is supposed to help doesn't always do the trick rite away at least we have the meds available. We were limited to only so many trex a month too but our doc had to call the physicians hot line for the insurence co to explain so he could get more. Not enuff but was more at least !!! Doc reworded his diagnoses to retractable migraine and got the ins co to pay for more trex. Sounds wierd I know but it worked and he said he has dealt with the ins co's so much and there CRAP he knows how to work around them with WORDING. Whatever works....weren't not goin to complain cuz of the words he used. Hang tough.......yo got alot of people here to hang on with you Pam |
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Title: Re: WE NEED TO FIND A NEW NAME..... Post by Ree on Sep 17th, 2005, 2:04pm You are so brave Jazzi... believe that it won't last forever...You also give us a reason to fight harder. love Ree |
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Title: Re: WE NEED TO FIND A NEW NAME..... Post by rextangle on Sep 17th, 2005, 2:13pm How about we call CH "Inverted Viking Hat"? Jasmyn, I'm so sorry you're going through this :'( Hang in there! |
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Title: Re: WE NEED TO FIND A NEW NAME..... Post by don on Sep 17th, 2005, 2:24pm Its only when I use full doses the frequency of attacks increases. When I use 1/3 the attack is aborted, I can function again and there is no increase in frequency. |
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Title: Re: WE NEED TO FIND A NEW NAME..... Post by cootie on Sep 17th, 2005, 3:15pm Cluster crunch ? I have a vikeing hat I got off ebay for halloween........inverted....OUCH !!!! Cluster buddy Pam |
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Title: Re: WE NEED TO FIND A NEW NAME..... Post by Charlie on Sep 17th, 2005, 3:15pm The only thing I came up with years ago is some kind of "syndrome" but after coming here.... shows ya what I know. Hmmmmmmm http://www.netsync.net/users/charlies/gifs/writing.gif Charlie |
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Title: Re: WE NEED TO FIND A NEW NAME..... Post by nani on Sep 17th, 2005, 3:44pm on 09/17/05 at 10:36:22, Ree wrote:
Ree, I took Neurontin and kudzu with no ill effects. It's not recommended that triptans and kudzu be used at the same time. Some people have done so with no ill effects, and some have taken trex within 2 hours of kudzu, which makes the trex ineffective. The thing is, kudzu (if it's going to work) will help enough that he won't need trex. If he's getting hit so hard, he may want to start on the maximum dose and spread it out over the day (taking a dose at least two hours before he usually gets his big hits). Have him try to use O2 if he's still getting hit the first few days. It's really the best abortive choice for kudzu. Jasmyn... I'm sorry you're getting slammed, also. Have you considered kudzu? If you can't get it over there, PM me. hugs and PF wishes to both of you, nani |
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Title: Re: WE NEED TO FIND A NEW NAME..... Post by Jasmyn on Sep 17th, 2005, 5:25pm Thanks to everyone. Quote:
Nani apparently you can't use it when you have very low blood pressure and mine is as low as it can go since childhood. Fainting is my hobbie :) But thanks. |
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Title: Re: WE NEED TO FIND A NEW NAME..... Post by broomhilda on Sep 17th, 2005, 6:27pm :-/ :'( [smiley=hug.gif] on over to all of you, breaks my heart, pf wishes flying your way from Canada... Ree, I so agree with you, some days just wish headache was not attached to this :( Thinking and wishing for pf times Andrea |
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Title: Re: WE NEED TO FIND A NEW NAME..... Post by AussieBrian on Sep 17th, 2005, 7:39pm Thunder-head's disease? |
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Title: Re: WE NEED TO FIND A NEW NAME..... Post by E-Double on Sep 17th, 2005, 7:47pm on 09/17/05 at 14:24:41, don wrote:
Ditto & Ree, By splitting the dose the half life is not effected!! The doctor is wrong. You can also get imitrex in vials which is the same exact medicine that is in the statdose syringes. Yet you can use a regular syringe to take less. It is the same concept. It does not effect the half life!! Whatever he does do I wish for the both of you to catch a break!!!! I always say that I have a screwed up hypothalmus that has created a neurovascular disorder. ;) Hugs! E |
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Title: Re: WE NEED TO FIND A NEW NAME..... Post by FrankF on Sep 17th, 2005, 8:00pm I have been using half doses of Imitrex every day for three months. Lately I have noticed attacks 2-3-4 times per day... I was used to 1-2 per day before Imitrex came into plentiful supply. I also am getting shadows randomly stabbing me in the eye or nose that last for 5 to 6 hours at a time (never had those before). Not sure if it is Imitrex rebounds or the Prednisone taper that ended last week. From what I am reading here maybe its a good thing I am out of trex for a couple of weeks? O2 is working well for now anyway. |
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Title: Re: WE NEED TO FIND A NEW NAME..... Post by don on Sep 17th, 2005, 8:23pm Quote:
I wouldn't think so. The half life is the half life regardless of the amount. |
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Title: Re: WE NEED TO FIND A NEW NAME..... Post by E-Double on Sep 17th, 2005, 8:29pm on 09/17/05 at 20:23:18, don wrote:
bingo |
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Title: Re: WE NEED TO FIND A NEW NAME..... Post by Ree on Sep 17th, 2005, 8:44pm Don~~My Neuro told me the same thing because I was always cutting the zomig in half... he told me to take the whole pill... so that I would be sure to keep the med in my system long after it aborted the HA... Catch 22 is that the doc also said that taking meds causes rebound HA... and I believe that you also need to treat the rebound with ibuprophen or a pain med... try to make that go away too... or it leads to another CH... Frank~~ I agree that now that Dave is using the trex etc he is getting hit worse but he also usually cycles this way... starts gets one and then a few days later one and then every day and then a few a day and then so many he wants to die and then ... they start to go down in the same manner..... freaken weird... HOW THE HELL DOES THE BODY KNOW TO DO THIS... it is the weirdest phenomenon I have ever seen. You would think I was used to this after the 18 years I've been witness to this. Then to have them dissappear for 2-3 years without a twinge... this guy never gets a head ache of any kind in between cycles.... ree |
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Title: Re: WE NEED TO FIND A NEW NAME..... Post by Sean_C on Sep 17th, 2005, 8:49pm on 09/17/05 at 09:00:01, Ree wrote:
But I meant that, I really do get those ;;D Tell Dave to kick his arse, pf days are comin ;;D Lotsa love comin at ya ;) Sean....................................... |
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Title: Re: WE NEED TO FIND A NEW NAME..... Post by Jonny on Sep 18th, 2005, 12:35am on 09/17/05 at 20:44:38, Ree wrote:
In my opinion (and its just that) Daves cycle starts and gets worse with the Trex until the cycle ends. Since I stopped taking the trex a year ago I am no longer chronic.....Hmmmmm!! Fluke?.....I dont know, but after 30 years of this chronic shit I am ;;D |
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Title: Re: WE NEED TO FIND A NEW NAME..... Post by Ree on Sep 18th, 2005, 9:02am I agree jonny... So give us some ideas.... what did you do when you got hit while you were giving up the trex... this is also when I feel helpless and this year Im not the supporter I used to be due to my own issues..... Im just exhausted..... he looks to me for answers and I don't have any..... help.... ree |
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Title: Re: WE NEED TO FIND A NEW NAME..... Post by Jonny on Sep 18th, 2005, 9:06am I find Zomig NS works just as fast as the Trex shot and it has eight times the half life. Hope that helps. |
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Title: Re: WE NEED TO FIND A NEW NAME..... Post by AussieBrian on Sep 18th, 2005, 9:33am Ten years ago I gave up on all medications. They were either causing more problems than I already had, or leaving me less capable of dealing with the trouble at hand. I'm not reccommending this as a treatment for everyone. We're all different but it's worked for me. |
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Title: Re: WE NEED TO FIND A NEW NAME..... Post by BobG on Sep 18th, 2005, 12:08pm Quote:
My clusters started about 30 years ago. At that time doctors knew zero, zip, nada about treatment for clusters. I did find a neurologist that had “heard” about them. He prescribed Sansert. He said that was the only med available that would help. Of course, being young and gullible, I believed him. Imitrex didn’t come on the scene until 1992 (I think) and was only for migraines. CH.com didn’t start until 1998 so I had no idea there may be other meds or treatments available or even that anyone else suffered from clusters. I didn’t know about preventatives like verapimil, etc. I took the Sansert and it helped. I just rode out the attacks. Usually one 6-8 week cluster a year with no abortive or preventative except Sansert. For the last 6 years I have had yearly shadow periods with an occasional ‘real’ individual attack. So, for now, I am relatively pain free. I keep seeing folks talk about all the meds they are or have been taking for years. Do the meds build up in the body over time and actually make things worse? Just asking, I don’t know. Maybe I have finally out-aged them. Or, maybe by not taking the meds over the years I did myself a good thing. Hell, I don’t know. |
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Title: Re: WE NEED TO FIND A NEW NAME..... Post by Ree on Sep 18th, 2005, 1:06pm Thanks jonny... and Bob... I hope you are done with them Bob wouldnt that be great... We as a couple are having a bad day today... He is really edgy and snappy and I might hit him with a frying pan and knock him out....... If I end up dead remember this post.......for something to tell the cops..... We didn't need this cycle on top of his recent shoulder surgery and my dad dying..... its as if the powers that be said....Hell she finally has her kids out of Iraq lets give her something else....... yep Im whining again...... If he swings at me Im outa here...... I just told him not to make enemies with me because he needs me... (OHHHHH and Bob how do you multiple quote like that... ) love ya ree |
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Title: Re: WE NEED TO FIND A NEW NAME..... Post by cootie on Sep 18th, 2005, 1:58pm Did the surgery bring him back into cycle Ree......jus wonder'd cuz I have read that that happens alot on here seems to me !?? Brad started out with 2 REAL bad hits a day......same time.......6:00 am and 6:00 pm.....no treatment or a diagnoses yet either for the first few cycles. Then once he started imitrex he began getting hit 3 to 4 times a day then got panic'y and was takein more of the meds. And he seem'd to get hit ALOT more and more shadows which he freaks out about and takes more shit. I tried to explain to him to try and tell the difference and not take the meds AS MUCH. (who am I to tell him tho......it's gawd aweful pain to dread comeing on) Last cycle was REALLY wierd.....he never knew WHEN he was goin to get slammed but he also tried to do his own thing and wouldn't listen to me. Took way too many meds with the slightest twinge and he felt he needed to relax more cuz of job and family stress and have a few beers more often esp efore bedtime......WRONG ANSWER. He got hit after he went to bed anyhow but with beer he got hit harder faster and more often. And it went from there. He was REALLY hard to get along with that last cycle. Am hopein he never goes back in cycle again.......PLEASE ! Can I be so lucky Pam |
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Title: Re: WE NEED TO FIND A NEW NAME..... Post by Ree on Sep 18th, 2005, 7:02pm I hear ya Pam....... what a day.....! I hope we both get lucky...love ree |
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Title: Re: WE NEED TO FIND A NEW NAME..... Post by Frank_W on Sep 19th, 2005, 7:47am on 09/17/05 at 10:43:02, Jonny wrote:
BINGO. I will never use Imitrex ever again, no matter how bad the hit is. I'll ride it out. |
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Title: Re: WE NEED TO FIND A NEW NAME..... Post by Ree on Sep 19th, 2005, 4:56pm at this point he isn't taking any of my advice and he is on his own.... I'm tired of fighting with him.... ree |
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Title: Re: WE NEED TO FIND A NEW NAME..... Post by cootie on Sep 19th, 2005, 5:10pm Um Ree........now I hear you.....cuz I know EXACTLY where yer comeing from !!!! I got to the point where I'd run to the store to get away and leave him alone to 'do his thing'......of course I made sure all his stuff was out he needed or he knew where it was. Closed the livingroom curtains and sound off on the tv and took the phone off the hook and OFF I'd go.....or I'd go outside a long time. Cats knew better and all stayed upstairs. Don't mean to sound uncareing here but I got tired of the hassle....it's just NOT MY FAULT dam it. Good luck to ya......I seen the beast within Pam |
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Title: Re: WE NEED TO FIND A NEW NAME..... Post by Jonny on Sep 19th, 2005, 5:27pm on 09/18/05 at 12:08:37, BobG wrote:
There just may be some truth to that for some of us, Bob.......30 years chronic here, but for the last year I have had more PF time that I ever thought id have. Im talking months of PF time, even if a HA wakes me its never more than a Kip 5 and I kill it in 4 mins with 02. In 30 years I have always woken with a 9-10. Only here would I admit this, amongst people that really know....sometimes I will just cry and ask if this is really coming to an end, if this ride through total hell is actually going to stop. (ok, time for yous that dont like me to take your pot shots, Ive shown weakness) If I could I would share this PF with all of you (Not all of it, but some of it ;;D ) |
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Title: Re: WE NEED TO FIND A NEW NAME..... Post by LeLimey on Sep 19th, 2005, 5:30pm Thats not weakness Jonny :-* And anyone who says this pain hasn't made them cry sometimes is a liar. |
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Title: Re: WE NEED TO FIND A NEW NAME..... Post by rickyshot on Sep 19th, 2005, 7:14pm on 09/19/05 at 17:30:51, LeLimey wrote:
Cry is joke. How about screaming. When I was in my 30's they were so bad I would run around the house breaking things. My kids have bad memories. How I never got locked up is beyond me....... |
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Title: Re: WE NEED TO FIND A NEW NAME..... Post by E-Double on Sep 19th, 2005, 8:44pm Jonny, I have tears of joy for ya brother! |
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Title: Re: WE NEED TO FIND A NEW NAME..... Post by TomM on Sep 19th, 2005, 8:57pm on 09/19/05 at 17:27:20, Jonny wrote:
That is NOT weakness, Jonny. It's called dealing with it. I cry a lot and eff any one who says I'm a pu$$y for it. Ree, honey. Hang tough. I have no words of wisdom; just support. TomM |
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Title: Re: WE NEED TO FIND A NEW NAME..... Post by blossom on Sep 19th, 2005, 10:07pm on 09/19/05 at 20:57:19, TomM wrote:
Amen. Seriously I think that a lot of times you have to just let it go and let the tears flow. I have had times when the hit is so intense I CAN'T cry but by God when its over I have a huge ol' sobbing fit! You know the kind where there is so much snot in your nose you think you will never be able to breath again?! Yeah that kind of crying. I don't think it is wimpy to cry, I think it shows you are just like everyone else - HUMAN. :-* - Karen |
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Title: Re: WE NEED TO FIND A NEW NAME..... Post by nani on Sep 19th, 2005, 10:39pm Fukeneh, Jonny!!! http://bestsmileys.com/happy/5.gif I'm so happy for you! :-* May it last forever. hugs and love, nani |
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Title: Re: WE NEED TO FIND A NEW NAME..... Post by Carl_D on Sep 20th, 2005, 12:32am on 09/19/05 at 17:27:20, Jonny wrote:
I have heard tham some people who start getting them early in life can eventually outgrow them. Hearing this from a few ex chronics, it gives me hope. This month marks the 18 year point for me, the last 7 being chronic. Glad your finally getting away from the beast at last. I hope it lasts too man. After 30 years of the shit, you deserve it. Peace, Carl |
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Title: Re: WE NEED TO FIND A NEW NAME..... Post by giffy76 on Sep 20th, 2005, 12:15pm Wow! I never knew so many of you had problems with trex. For me They have been a life saver and I don't leave home with out them. When I first started trex I took a whole shot and I did get some rebounds, but then I started halfing them and I don't get the rebounds anymore. Ree. Prayers goin to you and your fam. and don't use a frying pan it leaves to much evidence. Jas. [smiley=hug.gif] |
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