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Title: Help - any hope left Post by rcw134 on Feb 22nd, 2005, 10:57pm I've just gotton over a bastard of a headache - a migrain and I thought my head was gonna explode. I've been have two to three clusters a day, and I also get migraines. I was told 25% of those with these headaches have both. I've had these daily since July 2004. I've been on amitriptyline, verapamil for years. I've tried imatrix, ergotamine, stadal spray, topomax, and at least ten others over the past years. I became cronic in 2001, and now it's daily cronic. I retired from the police force in 2003 and am getting retirement - I've held down a job as a manager at a Sears parats and service store - the daily headaches started while at Sears. I thought the stress of my Detective job was the main cause of the headaches. After retirement and working at Sears until Aug I ofund out it's not only or plain is not stress that causes the CH. My retirement insurance was throught the county which is self insurred, it was paid until age 55, since I turned 55 this year, my insurance premiums are $1245 a month. Not being able to work, getting 2 grand a month and owning a home - I cannot see how I am going to provide for my wife and myself. We have a beautiful home, and I need to know what help is out there. I took three percodan to stop this one tonight, but God it was a bad one - I felt like taking the whole bottle - not to kill myself - just to stop the pain. O2 an ice pack for the back of my neck and top of my head and waiting for the pain meds to kick in - God is there any hope? My wife asked me tonight what we're gonna do, and I really don;t know. Tomorrow inbetween CH I intend to check on other insurances out there and any sservices that can help until I can get my appeal for S.S. disability thru. Can any one offer any advise? Right now I'm fearing the next one tonight - ice, midrin, maxalt, percodan, x-strength vicodan (how do people get hooked on that? - I sure as hell don't see it. What ever, any one with help please respond - day after day after day after day. The best neuroligist (sp!) I ever had since 1976, died in an auto accident. Since then I've been dealing with my family Dr. He'd refill my scripts, and when something new came along, we'd try it. At thie point the Dr told me because of the complex headaches I have, I needed to see a specialist or headache center (did Diamond in 1997, hystimane for 10 or 11 days). I'm going to check into the UW (Wisconsin) in Madison and see if they have anything to offer or that they want to try on me. God some days are hard. I look forward to and pray there is some kind of hope out there. Ray |
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Title: Re: Help - any hope left Post by Ellick on Feb 23rd, 2005, 4:51am Hi Ray, Sorry that you are in such a tough place right now. I cant offer any advice about finance because I live in the UK and dont know how it all works in the USA. Have you looked at the current high level of interest in Kudzu and have you tried O2. Never stop looking for an answer, one day it will be there for all of us. Go for the pain first and money finance stuff next. I have found I cannot resolve stuff while my the CHs are in full flow. Hope you get to pain free soon and full life benefits follow. My best wishes to you Ellick. |
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Title: Re: Help - any hope left Post by karma on Feb 23rd, 2005, 6:12am Hi Ray, There is hope! I'ts not clear how much of the verap your on but the tendency is for the docs to not prescribe it in high enough doses. 480 mg/day up to 960 mg/day is not uncommon providing your heart can deal with it. A combination of a prednisone taper to temporarily stop the hits with verap as a prevent is pretty common. The pred has some big drawbacks if not prscribed properly but in short courses can be affective. An example would be starting at 60 mg and taper down to zero over one or two weeks. Take a look at www.clusterbusters.com. this method has been hugely affective for chronics and episodics but being in law enforcement you should know the risks. On the meds and treatments board there is agood discussion ongoing about Kudzu. Careful with the pain meds. they may be causing the frequency to increase and have little affect on the pain. We all know the pain can be unbearble but weening of the triptans may not be a bad thing. There are lots of folks here that do not or cannot use them. For me I have found that allowing the pain to get me all worked up makes it worse. I have found that a concentrated effort on deep breathing from the dyaphram, in through the nose and out through the mouth, helps me get through it. The stomache should be going in and out and not your chest. When I do this I am able to sit in one place with my eyes closed until the pain is gone. I know whats gonna happen and I know the pain is gonna go away. I have accpeted this and am able to ride it out. Its hard to accomplish but with practice it helps. |
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Title: Re: Help - any hope left Post by Redd715 on Feb 23rd, 2005, 7:51am Hello Neighbor!!!!! I'm just a short 15-20 minutes south of you. Please check your private messages, there is a place in the upper right corner of the page to do that. Oh and BTW who were you seeing before as a neuro and I'm so sorry you needed to find us but we are glad you did. As I said check your messages I know a pretty good HA specialist here in Stevens Point. |
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Title: Re: Help - any hope left Post by Sean_C on Feb 23rd, 2005, 8:18am Percodan and Vicodin will cause rebound headaches. Sean...................... |
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Title: Re: Help - any hope left Post by Bob_Johnson on Feb 23rd, 2005, 8:21am This is a somewhat dated collection of ideas for dealing with insurance issues. (Use the "archives" button too find the old messages.) ---------------- HMO/MANAGED/INSURANCE PROBLEMS See message at 1/18/00, "Dealing with managed care" and, "If HMO/insurance won't cover treatment", at 12/06/99. WWW.HEALTHINSURANCEINFO.NET Provided by Georgetown University. "Consumer Guide for Getting and Keeping Health Insurance." State by state guide to protections around health insurance. POTENTIAL SOURCES OF INFORMATION AND ASSISTANCE IF YOU HAVE LOST COVERAGE BECAUSE OF LOSS OF EMPLOYER COVERAGE. Because obtaining coverage for preexisting conditions (CH) is usually difficult, impossible, and/or expensive, searching a variety of sources is often required. This is not a comprehensive list of sources but a few suggestioins copied from the Prostate Problems Mailing List (10/31/01). 1. Group coverage may be obtained through professional associations, school alumni associations, or fraternal organizations. 2. National Association for Socially Responsible Organizations, a nonprofit cooperative based in Wasington, D.C.. The group doesn't sell health insurance but it provides referrals to other groups which might be able to help find coverage. Phone, 800/638-8113; info@nasro-co-op.com 3. Working Today, an advocacy and service group representing all types of independent workers. 212/366-6066; working1@tiac.net; www.workingtoday.org. 4. Women, Inc. a Los Angeles based membership group for female entrepreneurs. 800/930-3993; womeninc@aol.com; www.womeninc.com. 5. The Health Insurance Portability and Accountability Act of 1966 (HIPAA) requires insurance companies to "convert" group health plans to an individual plan which covers the preexisting conditions which was covered when the person was in a group plan. The person must have used the COBRA benefit before using HIPAA. (You may have to call your state insurance office to get information/contacts.) 6. States often have risk pool programs which allow limited coverage for preexisting problems. You might start by looking at the Georgetown University web site mentioned above and/or calling your state insurance office. |
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Title: Re: Help - any hope left Post by Rock_Lobster on Feb 23rd, 2005, 9:16am Shrooms. |
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Title: Re: Help - any hope left Post by Rock_Lobster on Feb 23rd, 2005, 2:36pm And mayhaps Kudzu. |
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Title: Re: Help - any hope left Post by Bob P on Feb 23rd, 2005, 6:31pm From the OUCH Medications page: http://www.phrma.org/ |
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Title: Re: Help - any hope left Post by Kris_in_SJ on Feb 23rd, 2005, 7:51pm Hi, Welcome, but so sorry you have to be here. You're obviously dealing with a great number of issues. High on the list is dealing with a debilitating condition that requires insurance, but having to pay ungodly amounts to maintain it. My husband and I are both self-employed. Our monthly insurance payment is more than our mortgage, so I can relate. It sounds like you've tried many meds, but does that include Oxygen? It's a manna from heaven to many cluster sufferers. Otherwise, I'm with Rock Lobster on this one. While it might go totally against your beliefs as a former detective, shrooms are the answer to many chronic sufferers. Try a visit to clusterbusters.com. I have no idea how shrooms work on migraines, but they've been very successful for chronic clusters. Hang in there and many hugs coming your way, Kris |
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Title: Re: Help - any hope left Post by TxBasslady on Feb 24th, 2005, 2:54am on 02/23/05 at 08:18:29, Sean_C wrote:
Amen !! Sean is right, Ray. Some of the meds you are taking like the Percodan and Vicodin will give you rebound headaches. Narcotic drugs do very little for CH. If you read the posts here, you will see this written and stated over and over again. They may stop the pain temporarily, but the CH will come back bigger than ever. You need to try and ditch those drugs, not because of the addiction factor so much as the rebound headaches you are bringing on. If you get nighttime hits, you might try Melatonin. You can buy it at Wally World for about 2 or 3 bucks a bottle. Buy the 3 mg. tablets, and try taking 2 or 3 before bed. Give it a few days....and you may find it will help. And also...like someone said...check out the thread on Kudzu. There are alot of home remedies that will help. The CH will break thru sometimes, but any PF time you get is worth it. Welcome to the board.....I am also retired from the Sheriff's Dept. here in Texas. My husband is retired Fed Gov't, so fortunately, we have continuing insurance. There are also some areas that offer some studies on CH. Check out some of the posts on those studies. The meds are provided and it helps you and the Medical Facility conducting the studies. Good luck.....and lots of PF vibes. Jean |
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Title: Re: Help - any hope left Post by tc12346 on Feb 24th, 2005, 10:52am read about candida. It worked for me. www.candidadiet.com |
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Title: Re: Help - any hope left Post by LeLimey on Feb 24th, 2005, 11:26am okay thats two strikes DD REDD TROLL ALERT!!! You say you aren't selling anything but you have made two posts both plugging this site... fishy?? and thats just the candida huh? You've told us nothing about your symptoms and /or how long you've had CH.. what other meds you tried or anything Oh and guess what? You registered here 20 minuts before the post on this page! Can't you even be bothered to research what CH is before you plug your website? We've seen it all before, no doubt we;ll see it all again |
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Title: Re: Help - any hope left Post by Redd715 on Feb 24th, 2005, 11:52am Yeah Helen this dude with the yeast thing has been here before...a hit and run troll, never stays around long enough to polk sticks at...lol |
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Title: Re: Help - any hope left Post by LeLimey on Feb 24th, 2005, 12:00pm Never mind Redd.. at least I know you are here! Thats what counts! |
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Title: Re: Help - any hope left Post by vig on Feb 24th, 2005, 12:01pm Tony Orlando... The stars won't come out if they know that you're about Cause they couldn't match the glow of your eyes And, oh, who am I ? Just an ordinary guy Tryin hard to win me first prize Oh my Candida We could make it together The further from here girl the better Where the air is fresh and clean Oh my Candida Just take my hand and I'll lead ya I promise that life will be sweeter 'Cause it said so in my dreams The future looks bright, the gypsy told me so last night Said she saw our children playing in the sunshine And there were you and I in a house, baby, no lie And all these things were yours, and they were mine Oh my Candida We could make it together The further from here girl the better Where the air is fresh and clean Oh my Candida Just take my hand and I'll lead ya I promise that life will be sweeter 'Cause it said so in my dreams Oh my Candida We could make it together The further from here girl the better Where the air is fresh and clean Oh my Candida Just take my hand and I'll lead ya I promise that life will be sweeter yup, Candida, indeedy |
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Title: Re: Help - any hope left Post by Redd715 on Feb 24th, 2005, 12:23pm Are you saying she gave him an infection Vig? [smiley=crackup.gif] [smiley=crackup.gif] [smiley=crackup.gif] |
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Title: Re: Help - any hope left Post by sandie99 on Feb 24th, 2005, 12:41pm maxalt works with my head... :) |
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Title: Re: Help - any hope left Post by tc12346 on Feb 24th, 2005, 12:56pm I am not selling anything really. My symptoms were headaches/migraines, chest tightness, achey muscles, fogginess, really tired even when I just got up like I did aerobics. I am only here to tell you guys that since I've been on the anti-candida diet, all of these symptoms are gone. I am not promoting any site, just the one I showed above was a good one. Do your own search and you'll find many sites on this subject. Sorry if you think I'm full of it but I'm only here to help cause I'm better. Are you? |
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Title: Re: Help - any hope left Post by TomM on Feb 24th, 2005, 12:57pm on 02/24/05 at 10:52:32, tc12346 wrote:
Hit the happy trail, troll. on 02/24/05 at 12:56:14, tc12346 wrote:
You are begining to piss me off. Why don't you go play on the freeway; you are not welcome here! |
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Title: Re: Help - any hope left Post by tc12346 on Feb 24th, 2005, 12:59pm you're sad - I'm only trying to tell you that this worked for me. |
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Title: Re: Help - any hope left Post by TomM on Feb 24th, 2005, 1:08pm on 02/24/05 at 12:59:46, tc12346 wrote:
Fine. It worked for you. Your symptoms are not like CH. Quote:
BTW--I tried to e-mail you so I could do this privately but yours is hidden; mine is not. Please contact me. TomM |
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Title: Re: Help - any hope left Post by Redd715 on Feb 24th, 2005, 1:12pm you know what? we don't care what worked for your chronic fatigue syndrom azzhole. This is a CH site, and you are obviously not a Clusterhead... Be gone before the the boot is up your azz...you obviously have not read the welcome sign. "Exclusivly for CH sufferers and supporters" You ahve been here many times to the same end? Are you taht daft that you can't understand you have nothing we can use and we don't want you here. Pick up your toys and go home! to add: I really hate it when idiots like this prey on the newcomers who are desperate to find relief from CH. Gawd it just gets up my craw! |
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Title: Re: Help - any hope left Post by Redd715 on Feb 24th, 2005, 1:19pm Quote:
You don't have CH...we do. You don't seem to get the message....Go away and never come back! Favorite line from LOTR... ;) |
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Title: Re: Help - any hope left Post by tc12346 on Feb 24th, 2005, 1:29pm I can't believe the great support here. My original reply was to rcw134 and the topic is "any hope left". And yes I did have CH and no I don't want to share my email. All I want to do is share very good info. Sorry if I'm not here 24/7, I do have a job and other things to do. If you don't have any answers for people, then you shouldn't be telling me to go away. |
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Title: Re: Help - any hope left Post by Redd715 on Feb 24th, 2005, 1:35pm Listen dip shite! You stated your symptoms and they are NOT CH! Yes we have an inalliable right to tell you idiots to go away. It's you who aren't listening very well! Of course you don't want to share your email because you know you are a scum bag and will be innundated with hate mail. Now get your sorry but outta here before we run an IP trace. You are pathetic. We support clusterheads here. Not trolls. We help and support true sufferers. Your symptoms prove you are not and nevere were a clusterhead. You take us for idiots, but it is you who are the idiot! |
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Title: Re: Help - any hope left Post by tc12346 on Feb 24th, 2005, 1:55pm So what help do you have for people? And maybe I did have CH. I didn't mention every detail. I don't like being called "dip shite", "scum bag", and "pathetic" so you should apologize. Is anyone with me? |
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Title: Re: Help - any hope left Post by Redd715 on Feb 24th, 2005, 2:01pm on 02/24/05 at 13:55:45, tc12346 wrote:
HAHAHAHA....you won't find support here...isn't that obvious? Tom and I, LeLimey, we all have your number...12346 isn't it? Gawd you a tenatious troll. I love your type! There is no cure for CH and if your candida theory held any water what-so-ever then there would be pamplets in every neuro and headache clinic around. You are such a brainless wonder. Is your monkey doing your typing for you? |
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Title: Re: Help - any hope left Post by TomM on Feb 24th, 2005, 2:02pm on 02/24/05 at 13:29:55, tc12346 wrote:
You did and we thank you. on 02/24/05 at 13:29:55, tc12346 wrote:
Finnegan, Henderson, Farabow, Garrett, & Dunner, LLP 901 New York Ave Washington, DC 20001 202.408.4000 Please call and ask for Tom Meyer. |
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Title: Re: Help - any hope left Post by Margi on Feb 24th, 2005, 2:06pm hey, TC - I'm glad you've found relief. The candida theory has been discussed here before and actually a lot of clusterheads do test positive for a candida overgrowth. Flash (who posted in your first thread), brought this candida test to us years ago and everyone posted their results over the next few days. I'd say roughly 70 - 80% of them were positive. I think there really is something to the theory, but I don't believe candida flourish causes cluster. Cluster is popularily believed to be caused by a hypothalmic abnormality, that's all there is to it. I do believe, however, that if you can get rid of the candida overgrowth, you will notice a reduction in all the symptoms you mention and, sure - headache of any kind is going to be one of them. I'm glad you've found your magic fix, but it's always dangerous to mention the word "cure" to a mob mentality that has for years gone undiagnosed with an affliction for which there sadly IS no cure. |
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Title: Re: Help - any hope left Post by tc12346 on Feb 24th, 2005, 2:11pm thanks, Margi. |
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Title: Re: Help - any hope left Post by TomM on Feb 24th, 2005, 2:21pm Margi--very well stated but, I am doubtful of "magic fixes". I am also leary of people who promote thier "fix" as a "cure" for all and that all symptoms disapear. TC--the address and phone number I posted is real. My e-mail in my profile is real. Call or e-mail me. I would love the opportunity to chat. TomM |
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Title: Re: Help - any hope left Post by Redd715 on Feb 24th, 2005, 2:22pm Margi, Thank you for your calm comments, but it looks as though he still didn't get it. ::) TC...don't confuse Margi's calmness and polite manner for support. If this was a viable treatment for CH you can bet your last dime that she and her Hubby would have had tripple mortgaged their home to provide this infomation to the world. |
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Title: Re: Help - any hope left Post by TomM on Feb 24th, 2005, 2:39pm on 02/24/05 at 14:22:56, Redd715 wrote:
As would all of us! |
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Title: Re: Help - any hope left Post by broomhilda on Feb 24th, 2005, 2:41pm I'm itchy.... :D I think its this thread... |
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Title: Re: Help - any hope left Post by Redd715 on Feb 24th, 2005, 2:43pm on 02/24/05 at 14:41:48, broomhilda wrote:
I luv ya sis! |
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Title: Re: Help - any hope left Post by broomhilda on Feb 24th, 2005, 2:58pm And lookie here I got boots on today, here if needed :-* |
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Title: Re: Help - any hope left Post by Margi on Feb 24th, 2005, 2:59pm on 02/24/05 at 14:58:01, broomhilda wrote:
Well, shine 'em up, darlin - I'm giving you the reins. Illegitimus non carborundum. |
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Title: Re: Help - any hope left Post by seasonalboomer on Feb 24th, 2005, 3:45pm If the claims you make are false, or if you don’t know your neuralgia from your neurosis, please be careful in making claims of cure-alls. While you will find an abnormal level of skepticism is one of the universal side-effects of the cluster sufferer (it’s natural conditioning, just when we’re fooled into thinking they’re through, they’re not through…..) you also will find people that have had to find that hope exists somewhere in this affliction. Whether it be in the beautiful pictures of kids and grandkids posted elsewhere on this site, or just in the kind words that many of these people share with each other. Or, maybe just in the cool morning air after a long night of pacing the floor. So every time there is something with a glimmer of a chance being mentioned on these boards, you can see the number of times something is read. So, please show some compassion. We are all operating on different levels of emotional reservoir and depending upon where we are in our cycle, you see some people in despair and other people in jubilation. All of them hoping something might change their future. What a sad case you must be if you are hawking some bull to this crowd. Your soul would have to be rotted to do such a thing if you’ve spent any time reading these folk’s messages of despair and pain (and sometimes joy). |
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Title: Re: Help - any hope left Post by karma on Feb 24th, 2005, 4:44pm Quote:
BULLS EYE Good one brudda |
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Title: Re: Opiates and CH Post by jasckorohod on Feb 24th, 2005, 5:04pm Opiates (percodan, vicodan, dilaudid, etc.) do not cause rebound headaches in people with CCH. They can in some cases cause them with other types of HAs and perhaps with some CH sufferers, but not as a rule. As far as opiates not being effective in helping to manage CCH pain, that depends upon the individual taking them; they do not work for everyone but they do work for some (I use them, have had CH since 1980 and CCH since 1996), just like any of the plethora of medications that CH people try. Just because it is written in posts here that they don't work or that they cause rebound HAs does not make it so. While it is valuable for us to share with others our experiences with various medications, it is irresponsible to "play doctor" and give medical advice. I find it difficult to believe that some people who are writing that opiates "never" work are advocating the use of hallucinogenics as a valid treatment method-please direct me to a website that shows hard evidence that that stuff works. What medications to use is a matter to be decided between patient and physician-let us leave it that way and use this site to share information, experiences and support and not to try to dictate treatment. |
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Title: Re: Help - any hope left Post by karma on Feb 24th, 2005, 5:18pm jaskorohod, I believe that throughout your time of pushing opiates here. You have been given advice based on experience not hearsay. People have also congratulated you on the fact that you have found relief. Take it or leave it. As far as the website for psilosybin, its right here in front of you. Its called Clusterheadaches.com. Take the time to read about it. But be careful you won't find much in the way of help for CCH |
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Title: Re: Opiates and CH Post by Redd715 on Feb 24th, 2005, 5:34pm on 02/24/05 at 17:04:35, jasckorohod wrote:
|
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Title: Re: Help - any hope left Post by Ueli on Feb 24th, 2005, 6:22pm I wonder if jaskorohod is identical to / a reincarnation of our old junkie friend Waterdog ? ::) |
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Title: Re: Help - any hope left Post by Redd715 on Feb 24th, 2005, 6:24pm on 02/24/05 at 18:22:01, Ueli wrote:
Waterdog ever go to Diamond HA Clinic? jasckorohod has a dis on the place on the Mediactions board. |
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Title: Re: Help - any hope left Post by jasckorohod on Feb 24th, 2005, 9:10pm Did I hit a nerve, girls? |
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Title: Re: Help - any hope left Post by Redd715 on Feb 24th, 2005, 9:25pm on 02/24/05 at 21:10:29, jasckorohod wrote:
Only the nerves of those that know your game. Ohhhh Ueli.............. ::) |
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Title: Re: Help - any hope left Post by jasckorohod on Feb 24th, 2005, 9:52pm Wie self-righteous Sie Amerikaner sind! Sie sind in Richtung zu allen moeglichen Ideen so feindlich, die zu Ihrer unterschiedlich sind. Moeglicherweise hben Sie zu viele Pilze genommen? |
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Title: Re: Help - any hope left Post by clarence on Feb 24th, 2005, 10:27pm on 02/24/05 at 21:52:58, jasckorohod wrote:
What the hell? If you are going to argue, at least do it so we can all understand it. This is lame. Casey |
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Title: Re: Help - any hope left Post by clarence on Feb 24th, 2005, 10:28pm By the way, I really hope that this is providing hope for rcw134. Casey Damn, broke my own rule. |
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Title: Re: Help - any hope left Post by Pinkfloyd on Feb 25th, 2005, 1:16am on 02/24/05 at 21:52:58, jasckorohod wrote:
LOL You could use some of those mushrooms yourself just for the enlightenment they may provide. These people (at least most of them) are very accepting of people that want to offer help, even if what is offered is known to not be of any help to them if they've tried it before. Its the act of being helpful that makes a person accepted, not necessarily the information offered. So, if you aren't being accepted, you may want to examine your act, and not your offering. It appears you may be here more bent on grinding certain axes than helping. If this is not the case, I only offer to you how it is perceived and not how you may have intended it. BTW, the Diamond Headache Clinic has helped far more people with clusters than opiods have, or ever will. Plus, the histamine treatment works much better on cluster adjustments than on attitude adjustments. Bobw (I'm not following this thread so if you feel a need to respond, please do so in email.) |
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Title: Re: Help - any hope left Post by Margi on Feb 25th, 2005, 9:55am naw, Ueli - this ain't H20Dawg. Hee cudnt spell that gud. ;) |
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Title: Re: Help - any hope left Post by vig on Feb 25th, 2005, 10:07am on 02/24/05 at 21:52:58, jasckorohod wrote:
working on the translation... "How self-righteous, you Americans are... They are so hostile toward to all possible ideas, which are different to their own. Possibly did you take too many mushrooms?" beißen Sie mich! |
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Title: Re: Help - any hope left Post by TomM on Feb 25th, 2005, 10:13am Yet, another hidden talent from our freind, Paul! Thank you. |
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Title: Re: Help - any hope left Post by Redd715 on Feb 25th, 2005, 10:16am I don't think he (jasckorohod) likes me very much. [smiley=laugh.gif] |
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Title: Re: Help - any hope left Post by TomM on Feb 25th, 2005, 10:21am on 02/25/05 at 10:16:46, Redd715 wrote:
And you lost sleep over this? [smiley=huh.gif] The guy is a [smiley=looser.gif] IMHO. Redd--what happened to your pic? |
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Title: Re: Help - any hope left Post by Redd715 on Feb 25th, 2005, 10:33am on 02/25/05 at 10:21:36, TomM wrote:
No I lost sleep to the beast as usual. As far as my pic is concerned I haven't been able to figure that one out yet. Everytime I try to redo it from Shutterfly it comes up like this. Big x-box. I hoped that it would straighten itself out, but so far no such luck. |
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Title: Re: Help - any hope left Post by TomM on Feb 25th, 2005, 10:39am The red x means the link to the image is bad or the image is missing. |
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