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Topic: New guy....am I in the right place? (Read 2121 times) |
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losthill
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New guy....am I in the right place?
« on: Feb 1st, 2003, 10:24am » |
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Hello All- 
I am willing to try anything to better understand what I suffer from and hoping to find help here. I have read much of the info here and have been going to my doctor for years now without any success really in treating what I think may be "cluster headaches".
My doctor has prescribed everything to prevent and treat my migraine/cluster/whatever headaches I have, (he has not been able to clearly indentify even what type of headaches I have). Only one thing has been somewhat successful in treating and that has been Imitrex, which I have not taken in some time.
2 years ago I found Excedrin Migraine and have taken it like candy since. Usually once a day, everyday and lately sometimes 2 doses a day.
My main question is, what do I have, Clusters? I really need to identify what I have before I can find a better treatment that may be safer. My doctor tells me that taking so much Excedrin is bad for the liver.
I seem to have some of the signs outlined on this site, but not others. What I get and can say is:
These headaches are all year round. Started years ago a couple times per week, growing to almost everyday. They are ALWAYS on the right side of my head and reach from my lower right neck to my right eye. My right eyelid for years now has been saggy. There is no pattern to my headaches that I can identify. I get them anytime 24/7.
I guess I could go into my lifestyle, but really needing to find out if I am in the right place. Any feedback is greatly apprecaited. I would continue abusing Excedrine Migraine daily if it wasnt for my recent Emergency room visit that costed me $500 for a shot of Morphine. That is what has me searching at this time. 98% of the time the Excedrin works, but that 2% is unbearable as I am sure you know.
So do these sound like Clusters? Many thanks for your feedback!
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fubar
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Re: New guy....am I in the right place?
« Reply #1 on: Feb 1st, 2003, 10:30am » |
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Did you take the cluster quiz?
http://www.clusterheadaches.com/quiz.html
-Fu
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domm
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Re: New guy....am I in the right place?
« Reply #2 on: Feb 1st, 2003, 10:48am » |
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losthill - cluster headaches start from nothing and go to full blast in a matter of minutes. The white hot poker in and around the eye produces excruciating pain. The sufferer cannot sit still and usually paces, rocks or bang his/her head against something in an attempt to distract or even ease the pain. The attacks usually will wake someone from a sound sleep. Attacks last anywhere from 30 minutes to several hours. When the attack is over, its over, there usually isn't any residual problem. Traditional OTC pain relievers do not work and can compound the problems causing rebound headaches. Oxygen, Imitrex and calcium channel blockers are effective in treatment.
Read up and take the cluster quiz as fubar suggested.
Only a good neuro is going to be able to properly identify whats happening with you. You can find a list of recommended docs at the OUCH website. There may be one someone else has found nearby.
Good luck
domm
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losthill
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Re: New guy....am I in the right place?
« Reply #3 on: Feb 1st, 2003, 10:52am » |
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I did,
It was helpful to see some of the questions, like the "droppy eyelid", which I have.
Other than that it just says "I may" suffer from CH. The first 9 questions would lead me to belive I am in right place, but not necessarily but my answers on the last 9. So I don't know.
Guess my hope is to find out if my symtoms and use of Excedrin Migraine make me a CH sufferer. Hopefully similar feedback will tell.
Thx
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Tony_M
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Re: New guy....am I in the right place?
« Reply #4 on: Feb 1st, 2003, 11:07am » |
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The thing is, it doesn't really matter. You can still benefit from the support that is here. You can try some of the remedies and see if they work for you. No two CH sufferers seems to have the exact same symptoms anyway. You are a sufferer, let's see if any of the good stuff on this site makes a difference. Then you can call it what you want.
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jonny
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Re: New guy....am I in the right place?
« Reply #5 on: Feb 1st, 2003, 11:31am » |
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on Feb 1st, 2003, 11:07am, Tony_M wrote:| The thing is, it doesn't really matter. |
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Yes, it does matter....If its not clusters, Lost should be seeking out what it is and get help in that fourm. this Is a cluster site, not a "any kind of headache site".
Excedrin Meegraine wont put a dent in a cluster headache.
.................................jonny
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cbolony
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Re: New guy....am I in the right place?
« Reply #6 on: Feb 1st, 2003, 12:16pm » |
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losthill here is a post from Ted a member about what a clusterheadache feels like.
But the other reason "cluster headaches" is a misnomer is because of what a true c-head feels. After you read this try and close your eyes and imagine it. You won't be able to but try. A red hot seering pole being slashed across your cheekbone and returned to destroy your flesh. It remains there for 1-4 hours. It gets pressed against your nostril to equal the pain but the addition of a 300 lb man adds to it by repeatedly kicking your cheekbone and nose.This is your final warning that some real pain is yet to come. Suddenly you feel his steel-toed boots bash your eye in. Molten lead is dripped into your eye as a shrply-fanged viper eats away at the same eye, releasing a strong acid-based venom. His twin eats away at your eye from the inside, also releasing the venom.
This happens several times per day. Every day.
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losthill
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Re: New guy....am I in the right place?
« Reply #7 on: Feb 1st, 2003, 1:48pm » |
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Heh- well they certainly do not feel like that. Oh well, maybe they are not CH then. Since there are hundreds of different kinds of Migraines, I thought maybe there were multiple types of Cluster Headaches.
My hope was to find others with my symptoms that may be able to shed some light, but if Execedrin Mirgraine does not get rid of CH's, then I dont have CH's.
My headache just happens to be everyday on the right side of my head and neck, started in my early 20's, I have a droopy right eyelid, so reading that these are symptoms of CH's, this sounded like the one.
Anyway, thats why I titled this subject "am I in the right place".
Maybe its time to dump the family doctor and look for a specialist like some of those listed on "OUCH".
I just want to find out what has crippled my life over the last dozen years, identify it, then properly treat it.
Thanks everyone! Process of elimination works too!
Peace
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Ueli
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Re: New guy....am I in the right place?
« Reply #8 on: Feb 1st, 2003, 1:50pm » |
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Tony_M,
did you miss what's written on the front door to this site:
This site is devoted completely and exclusively to those that suffer from, and to the supporters of those who suffer from Cluster Headaches!
And there are a few fucking good reasons DJ has put that up:- People with other types of headaches are usually not helped by the treatments for cluster headaches discussed here.
- We don't want to hear how others treat their meegraines, that has no relation at all to treating clusterheadaches.
- There are lots and lots of sites for meegrainers on the net, so they don't have to come here for help. In fact, DJ created this site was because he was tired of searching through hundreds of M. posts to find something about CH.
losthill,
Excedrin Migraine was approved for "pain associated with mild-to-moderate migraine", hardly something to compare to cluster headaches.
BTW, the composition of Excedrin Migraine (250 mg acetaminophen, 250 mg aspirin, 65 mg caffeine) is exactly the same as for the time honored Excedrin Extra Strength. The FDA approved it as a "new" medicament because in the leaflet "important information about appropriate use and when to consult a doctor" is provided. Duh! 
All a clusterhead can expect from over-use of Exedrin are rebound headaches lasting all day, a hole in the stomach from all the aspirin and sleepless nights from the caffeine.
PFNADs
Ueli
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jonny
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Re: New guy....am I in the right place?
« Reply #9 on: Feb 1st, 2003, 3:14pm » |
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Need I say more than Touche', Ueli
...................................jonny
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losthill
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Re: New guy....am I in the right place?
« Reply #10 on: Feb 1st, 2003, 5:39pm » |
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essssh! I didnt mean to get people all worked up here...
I have been told I do not have Migraines and that they sound more like Cluster Headaches by my Doctor. THAT is why I am here.
I feel like I may have stumbled on a cult here and because I may not share the same pain levels or exact symptoms as you I am thrown out into to the cold before I even get a drink!
I find it hard to believe this site was intended for such a thing.
Tony, thanks for the advice and making me feel welcome to look around. Why these two felt it necessary to throw their cyber weight around even after I said thanks and peace, is beyond me. I am sure that bitterness and negativity cant help the head problems much.
You two have basically told me in that in your vast medical training and experience with Cluster Headaches and your completed thorough exam of me, that I have what you call "meegraines" and that there are tons of sites out there for these types of losers!
Well, why you two "hi-five" each other for being part of the Cluster Headache Elites and putting Tony and I in our place...all I can say is, Thanks, but I think I will get other opinions!
Many differnt types of Migraines out there so is it remotely possible that there could be different types and levels of Cluster Headaches? One would think so....
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Laurie
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Re: New guy....am I in the right place?
« Reply #11 on: Feb 1st, 2003, 6:12pm » |
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Tony,
I'm just out of my cluster, so I'm not grumpy :)
To get a definative diagnosis, you should consult a neurologist; family doctors rarely have the expertise needed to diagnose and treat CH. Since there are less benign things that can cause headache besides migraine and CH, it's very important for you to get a diagnosis from an expert.
Did you ever see the movie "Pi"? That guy is definately a CH'er. However, everybody's clusters are a little different and can vary in severity. For example, I am unusual in that I sit upright without moving during my attacks. But a severe attack is unmistakable. I am a happy healthy person, but, when I get a Kip 10 (haven't for a number of years, thank goodness), I am likely to fantasize about suicide or self-brain surgery with the nearest sharp (or, hey, blunt!) object within the first 20-30 minutes.
Cluster headaches involve the trigeminal nerve, a sensory nerve in the face that has 3 branches just above the eye, just below they eye, and along the bottom jawline. One or more of these branches will be afflicted. To me, even a "mild" CH attack feels like a large white-hot spear has impaled my head at the temple and is poking out my eye with the sharp tip. Migraines do not involve the trigeminal nerve, and feel more like a warm pulsing wave of nausea, with light sensitivity and light-headedness.
Laurie
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Ueli
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Re: New guy....am I in the right place?
« Reply #12 on: Feb 1st, 2003, 6:53pm » |
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losthill,
you take quite a mouthful for someone who has to hide behind a vague moniker and has not the guts to supply mail address, age, where you come from, nor even whether you're man or woman. My guess is you're still a child, since you haven't even learned to read yet: My post was clearly divided into two parts.
In the first I opposed Tony_M's notion that this site is a playground for all people with any kind of troubles.
In the second part I tried to explain to you why it's useless to try to treat clusters with this OTC stuff. BTW, I couldn't make up my mind yet if you have clusters or not, since your abilities to describe your symptoms matches your ability to read a post. It would be helpful for all if you could work on these instead of displaying your wise ass.
Besides jonny and I there are a few hundred more that agree on:
This site is devoted completely and exclusively to those that suffer from, and to the supporters of those who suffer from Cluster Headaches!
I said it before, but repeat it gladly: It's a joy to welcome a new visitor who introduces himself by farting in our parlor.
BTW, losthill, the best way to make friends here is to find as much similarities between clusters and meegraines as you can make up; best is to declare they're just variants of the same thing.
Ueli
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parrothead
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Re: New guy....am I in the right place?
« Reply #13 on: Feb 1st, 2003, 7:44pm » |
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Losthill,
Although I'm new to this site as well, and I'm certainly not an expert. It seems to me that every clusterhead requires different meds to control the beast, and its possible that everyones beast may be a little different.
Some of your symtoms are certainly consistant with CH,
although an asprin-tylenol-caffine mix would not dent a CH.
I too pound excedrin, but for "tension" headaches I get on a regular basis along with my yearly, 3-4 month bouts of CH.
See a good Neurolgist and get a handle on your headaches! Good Luck, hang in there!
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losthill
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Re: New guy....am I in the right place?
« Reply #14 on: Feb 1st, 2003, 7:55pm » |
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Heh-
Ummm Ueli, I guess every community needs a village idiot, I see I have run into him on day one. All pain no brain...shame..
You really should read your response again, its quite amusing...
I did not know that I had "no guts" and was "hiding" because I didnt say my name, age, gender and state I live in? What difference would that make tough guy? My name is Kevin, I would be a 36 yr old male from LA. What happens now?
I also did not know you were still making up your "professional mind" whether or not I have Clusters... I guess I should have waited on the edge of my seat.
Then you go on to say that you have said it before and will say it again about welcoming people that fart in your parlor? So, I am not the first to receive your worthless negative responses, gee...big surprise there! Hrmm...maybe I am not the one with the problem?
Funny, you felt it necessary to use profanity to get your one-sided, shallow point across to Tony, and I am the child?
Maybe you should ask yourself why you are spending your time trying to be a forum thug.........I think we know that answer.
Tony, Laurie, Domm and cbo, thanks for your help and feedback of value. My appologies you have to read garbage like this, I am sure I will be embarrassed later that I even responded to this bozo.
This site looks like its extremely beneficial in helping people that suffer from Clusters, but it is also a tool for helping people who dont understand what they have determine wether or not it is Clusters they suffer from.
Just have to weed through the garbage first I guess..
Kevin
36 yr old Male
Los Angeles
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Linda_Howell
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Re: New guy....am I in the right place?
« Reply #15 on: Feb 1st, 2003, 8:45pm » |
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Losthill,
I am sorry you did not get the response from all of us who suffer from Cluster Headaches that you wanted.
But to call "our Ueli" a bozo, a village idiot, a thug......
You are now on VERY shakey ground !!!!!!
Please read all the links to the right if you haven't already done so. Take time to realize that we, as a cluster community here, have been here a long time. We are very tired of having to walk in the foot-steps of the migrainers who get all the attention, the grants for research, the MONEY, the drugs, the attention.
Also, please read some of the posts here on this Message board. They will give you some inclination as to the fact that we ARE a family here!!!!!!! WE are all we have sometimes. You have insulted one of ours.
Linda Howell
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losthill
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Re: New guy....am I in the right place?
« Reply #16 on: Feb 1st, 2003, 10:09pm » |
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Linda-
To think it wasnt even 12 hours ago I found this site, shared the excitement with my wife and placed my first post......and this is what it has turned into
Here is what I see.
An online family full of people that suffer from a common illness. Based on the feedback, most are helpful and a few are bitter, over protective and rude.
Did "your" Ueli not repremand your other family member with profanity, throw 3 rules out to my post (that I am still not convinced apply to me yet), classify me as a meegrainer, and call me a gutless illiterate wiseass child ?
Only THEN I respond with the thug and bozo remarks and I am now on shakey ground for insulting one of yours?? Do you know how silly you sound???
You are wrong when you say your sorry I did not get the feedback I wanted? Sorry , you wont scare me off that easliy, I got a great amount of feedback that I find extremely helpful from Tony, Domm, cbo, Laurie and Parrothead, otherwise, I would not have checked back throughout the day as I have.
All this helpful feedback in just one day, I am pleased!!!
It is Ueli's and your response that I am having trouble seeing any value in.
Why do you even repond I ask you? Why, this is MY post! Ask yourself why are you even bothering?
To think I had sense enough to end it before all this crap started after seeing Jonny's response. I said Thanks and Peace (see post at 1:48pm today).
Then Ueli had to use my post as a sounding board for his paraniod and immature message, hoping to start something and get others like him going.
If you don't want to help, then dont! Its bad enough to deal with this mentality in the real world.
Go jump on the next newbie and tell them how your sick and tierd of this an that.... I am hear for answers, you obviously have nothing I need.
Kev
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| « Last Edit: Feb 1st, 2003, 10:24pm by losthill » |
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jonny
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Re: New guy....am I in the right place?
« Reply #17 on: Feb 1st, 2003, 10:30pm » |
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on Feb 1st, 2003, 9:27pm, chantal wrote:
This website has been great for me. I haven't found ANY migraine sites out there.
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What a crock of shit, this website was built by a clusterhead because all there was was meegraine sites out there.....heres one for you and I didnt even have to look hard.
http://tinyurl.com/57tx
Lost,
Keep digging the hole......LOL
...................jonny
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| « Last Edit: Feb 1st, 2003, 10:33pm by jonny » |
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kim
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Re: New guy....am I in the right place?
« Reply #18 on: Feb 2nd, 2003, 12:27am » |
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Oh. Shut UP!
If you have clusters, welcome and thanks for the company.
I read this series of posts and can't seem to crack a grin at anything said here. Sounds like the soft shit I step in each morning - results of puppy poop.
So..............STFU.
Glug, Blah, Puff, ETC... 
PS: Uwlo(oops - that is UELI.........STFU!!!!!!!!!!!!!!!!!!!) 
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| « Last Edit: Feb 2nd, 2003, 12:33am by kim » |
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jonny
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Re: New guy....am I in the right place?
« Reply #19 on: Feb 2nd, 2003, 1:08am » |
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on Feb 2nd, 2003, 12:27am, kim wrote:
PS: Uwlo(oops - that is UELI.........STFU!!!!!!!!!!!!!!!!!!! |
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Bitch, when you know as much as Ueli you can tell someone to shut the fuck up.......until then shut the fuck up!!!!!!
..............jonny
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cootie
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Re: New guy....am I in the right place?
« Reply #20 on: Feb 2nd, 2003, 1:43am » |
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Banging your head against a wall uses 150 calories an hour........thought for the day.......Pam
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Linda_Howell
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Re: New guy....am I in the right place?
« Reply #21 on: Feb 2nd, 2003, 2:32am » |
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" DO YOU KNOW HOW SILLY YOU SOUND?"
NO, and I don't care, because for the last several years that I've been here........Ueli has been one of the guys that has informed me as well as others. HE takes the time to research. He isn't called our Wise old owl for nothing.
I have always been one to welcome with open arms anyone who has cluster headaches as are most of us here. I'm chronic. I have these MUTHERS.....every single day and night for ten years......with no end in sight.
Do NOT mess with this family!!!!!!!! until you're ready to come to us with-out the attitude.
Linda Howell
Linda
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Aussie
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Re: New guy....am I in the right place?
« Reply #22 on: Feb 3rd, 2003, 1:21am » |
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Just love the politics and mud flinging.
First time I've cracked a smile since starting this stretch of hell.
Crikey, humour is bloody good therapy.
Glad to have found this site for all the benefits.
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Ted
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Re: New guy....am I in the right place?
« Reply #23 on: Feb 3rd, 2003, 3:08am » |
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on Feb 2nd, 2003, 1:08am, jonny wrote:
Bitch, when you know as much as Ueli you can tell someone to shut the fuck up.......until then shut the fuck up!!!!!!
..............jonny |
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Because she's going through her own heavy shit, and because she said nothing rude to Ueli but was just giving the usual shit we all give each other, but mainly because she's going through her own heavy shit, Jonny, Shut up! Minus the "the fuck."
(Kim, you're going to owe me one big time for this. You better swallow!).
And let's not forget that Ueli, although he is well versed in clusters, does happen to take one minor point of a dozen symptoms, singles them out, and diagnoses from that alone. And forgets all the classic symptoms that were mentioned (no, I don't remember the person's name in particular. But I do remember seeing all the symptoms buried within a bunch of other symptoms and the ACTUAL symptoms being ignored).
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| « Last Edit: Feb 3rd, 2003, 3:21am by Ted » |
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Mark C
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Re: New guy....am I in the right place?
« Reply #24 on: Feb 3rd, 2003, 3:46am » |
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on Feb 1st, 2003, 10:09pm, losthill wrote:| Sorry , you wont scare me off that easliy, I got a great amount of feedback that I find extremely helpful |
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Fuckenh! You are gonna be fine!
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