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Topic: Re: Clusterville, Please Read (Alert! Non-Posters) (Read 1122 times) |
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Little Deb
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Re: Clusterville, Please Read (Alert! Non-Posters)
« on: Nov 17th, 2003, 4:35pm » |
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KOP,
Excellent post. I will copy it if you don't mind, and send it to a new guy I have been emailing who hasn't been to the board yet for whatever reason, but is happy to finally have someone to talk to. I found him in the North Carolina listing.
Thanks for the effort.
A true supporter you are! 
LD
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Little Deb
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Re: Clusterville, Please Read (Alert! Non-Posters)
« Reply #1 on: Nov 17th, 2003, 4:43pm » |
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I knew you would say that, already done!! 
LD
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Mikey
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Re: Clusterville, Please Read (Alert! Non-Posters)
« Reply #2 on: Nov 17th, 2003, 4:50pm » |
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I agree one hundred percent with yer post Brian. SO DITTO to ya, and i hope as you do that we will see more of these closet people come out of their shell and either reach out for help or etc...... At least if they don't want to post very much at all, there is always the e-mail route, but we have to know that they are here first. I've noticed that some of the closet types have not even as much as let us see their e-mail address, so this makes it hard to reach out to them......so if they would atleast post once, maybe we can do something for them that they didn't even expect that we could do for them...
Love to the FAMILY!!!!!!
Mikey, 
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CHRONIC and going crazy!! Want to come too?
Hope for PFDAN, peace and safety to you all!!
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Doug_L
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Re: Clusterville, Please Read (Alert! Non-Posters)
« Reply #3 on: Nov 17th, 2003, 5:00pm » |
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DJ lured me in with an email like that a very long time ago.
I had only posted on the guest book and really had no intention of returning.
His email caught my attention and now here I am day in day out.
Unless work interferes!!!! 
DougL
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Tom
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Re: Clusterville, Please Read (Alert! Non-Posters)
« Reply #4 on: Nov 17th, 2003, 5:03pm » |
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Thanks, KOP !
Thomas
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Thomas/Munich
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Little Deb
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Re: Clusterville, Please Read (Alert! Non-Posters)
« Reply #5 on: Nov 17th, 2003, 5:04pm » |
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I very often send a welcome when I notice a new member via IM. Just short and sweet with hopes they will be lured in for more conversation, or won't be afraid to ask for help. I am kinda forward like that!
LD
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Virginia
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Re: Clusterville, Please Read (Alert! Non-Posters)
« Reply #6 on: Nov 17th, 2003, 5:08pm » |
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Good idea King!
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The Clusterhead formerly known as 9erfan.
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ClusterChuck
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Re: Clusterville, Please Read (Alert! Non-Posters)
« Reply #7 on: Nov 17th, 2003, 5:50pm » |
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Great post KOP!
And we need more pushy forward family like Lil Deb. She is a keeper!
Come on, readers, post and let us know who you are!
Chuck
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Thomas Fuller
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Miss_Deleny
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Re: Clusterville, Please Read (Alert! Non-Posters)
« Reply #8 on: Nov 17th, 2003, 7:30pm » |
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HeHeHe ...
I'm not really a "closet" member, I just don't post much .. I love reading what everyone has to say though
~April~
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12gagueblast
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Re: Clusterville, Please Read (Alert! Non-Posters)
« Reply #9 on: Nov 17th, 2003, 11:10pm » |
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Looked at this site for years. signed up and put my first post up last night. i just liked knowing i wasnt alone. i have met 2 people face to face that have CH and that has helped a lot too. think you guys and this place is great. you have made me feel better even tho i havent posted before just by letting me know that when you say it hurts i know you know it HURTS. thanks all
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TxBasslady
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Re: Clusterville, Please Read (Alert! Non-Posters)
« Reply #10 on: Nov 17th, 2003, 11:23pm » |
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Great thread, KOP.............
I also have looked at that list, and like you, have wondered where these folks are. They don't know what they are missing!
This site has been a Godsend for me.
And you guys are the best in the world!!
Sending lotz of love to my cluster buddies.......Thank you for being here!
Jean
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tsayswhy
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Re: Clusterville, Please Read (Alert! Non-Posters)
« Reply #11 on: Nov 18th, 2003, 1:52am » |
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very nice letter kop
We need to find more CANADIANS 
from Ontario i feel like i am the only Tronto Maple Leaf
fan here
so any ontario people here looking in!!!! 
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Dee
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Re: Clusterville, Please Read (Alert! Non-Posters)
« Reply #12 on: Nov 18th, 2003, 2:29am » |
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Hi Folks!
I've been visiting here for almost 3 months now. You are all a God-send, for sure. I've been feeling guilty about not posting before, now this thread has been the "push" I needed.
I'm episodic, was pf for 6-1/2 yrs before this August. I do know that the "...after periods of great stress..." is the defining trigger for me. This episode is the first time I've tried any of the meds, or O2. I was diagnosed the last episode and the beast went on vacation before I had the meds filled. I've been taking Imitrex 100mg, Verapamil 240mg, and I'm trying to work-out the O2 thing. Really didn't want to bring O2 into my house (we all smoke here), broke down a month ago at my husband's insistance, and have learned so much from all of you.
I've had so many questions, I keep reading through the older posts, and generally find the answers. I'm just not comfortable posting, it sort of reminds me of the days of CB radios, you know? Nicknames and all that.
Anyhow, here I am just thankfull to have found you all!
One question I haven't found the answer to yet- 6 yrs ago I was helped greatly by a website about ch (one guy kept insisting that caffiene was the root to all ha), is this the same site? There are many similarities, and yet there are many improvements.
Thanks again,
Dee
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Donna_D.
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Re: Clusterville, Please Read (Alert! Non-Posters)
« Reply #13 on: Nov 18th, 2003, 3:13am » |
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Dee and 12gagueblast,
Thank you for letting us have to opportunity to get to know you. You won't be dissappointed!! I have found this group is comprised of some of the most compassionate , caring. charming, funny, helpful, supportive and loving individuals from all over the world. And as they are all individuals, they can help fullfil the inner spirit in hundreds of different ways.
When you post here there are people, real people, reading your words and feeling the same pain, joy, sorrow and happiness that you feel.
Some people will respond to you with kinds words and greetings of "welcome" and "sorry you have to be here...but since you are we are glad you are now part of our family".
Others will use laughter as an attempt to help lift your spirits when you are down, tell you a joke, send you a funny picture, all done to try and make you smile and forget about life for a while.
Education about our shared condition will be pointed out and many will encourage you to read and learn. Listen to them. They won't steer you wrong. Learn to fight the beast with some tried and true battle plans. We fight enough battles and eventually we will win the war.
And most importantly, many hands will be extended to you in friendship. The offers to share with others and have others share with you will amaze you.
And we all do this because we want to...we truly care about you and each other. For me, this place started out as a place where I could educate myself about my condition. Now it has become a part of my life. Be careful though, it is kinda addicting (especially around election time!! Can't wait to see what happens next!!)
Welcome Dee, I am sorry I don't know the answer to your question about the older board you referenced. But I am sure someone around here does. Keep watching and keep posting. Someone will reply.
Welcome 12gagueblast, judging from the name, it hurts real bad but you just might have a good sense of humor about things.
We don't just support headaches around here. We support people. Don't be a stranger. Let us know how we can help!
Donna D.
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| « Last Edit: Nov 18th, 2003, 3:18am by Donna_D. » |
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BarbaraD
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Re: Clusterville, Please Read (Alert! Non-Posters)
« Reply #14 on: Nov 18th, 2003, 7:28am » |
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Cafiene helps some.. I usually hit the black coffee at the first sign of a HA.
Don't know what posts you're referring to, but we've about discussed everything from cafiene to smoking to sex as a cure and cause for these things. so far, the jury is still out on all of them. We all react differently to the same things. Weather is coming along right now. It's funny (not really ha ha funny) that a great number of episodic sufferers have episodes during spring and fall... could it have something to do with the season? Someday we may know.
Welcome to Clusterville and glad that you're positng now.
Ask questions - you may get the answer you're seeking and you may get a 1000 opinions, but someone will answer with something.
Hugs BD
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Edna
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Re: Clusterville, Please Read (Alert! Non-Posters)
« Reply #15 on: Nov 18th, 2003, 3:58pm » |
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Steve, great post, and hoping that it prompts some into action.
I try to follow the example that one truly wonderful woman here showed me...........checking in with the guest list ppl, and taking time to email or pm them helps in ways we can't imagine.
It has led me to become great friends with a wonderful person, who did find out that it was NOT ch that she suffered from, but we do keep in touch.
So, perhaps others could find the time to reach out to those that are somewhat intimidated by posting, and hopefully that will help them even if they do not join us here. After all, we know that is what our aim here is.
pf wishes to you all,
EDNA
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suzy617
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Re: Clusterville, Please Read (Alert! Non-Posters)
« Reply #16 on: Nov 20th, 2003, 11:14am » |
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Whether you be a poster or non poster, just jumped in to say I wish you pfdans.
Hi Steve,
How YOU doin?? 
Suzy
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Callico
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Re: Clusterville, Please Read (Alert! Non-Posters)
« Reply #17 on: Nov 20th, 2003, 11:30pm » |
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Bypassed this posting the last couple of days and I'm sorry I did. Exellent letter KOP. I know this was a godsend to me when I first came across it, but I was afraid to post or let anyone know my e-mail addy, cause I was afraid of what someone might do if they got my address. Since I got on board I have NEVER gotten any spam or harassing e-mails as a result. I have only gotten a few e-mails from other members that were not initiated by me, and they invariably asked if I minded them writing. I have been extremely grateful for the help and encouragement I have gotten from the family on this MB.
If you are just reading without getting involved like I did for so long, jump in. You don't know what you are missing, and you don't have to worry about your security from this site.
Jerry
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Charlie
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Re: Clusterville, Please Read (Alert! Non-Posters)
« Reply #18 on: Nov 21st, 2003, 12:29am » |
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Welcome Dee and I hope you drop in now and then. You probably know that there are some good ideas about coping with this horror, and the lists grows.
I don't know if it was another site or simply us that pointed out a relationship to caffeine. It's usually said to be helpful rather than a cause. Especially on the old board, we'd have people who insisted they had the only answer. Maybe this was one of those over-enthusiastic types.
Glad to have you and let us know how things are going.
Charlie
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kantu
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Re: Clusterville, Please Read (Alert! Non-Posters)
« Reply #19 on: Nov 21st, 2003, 4:57am » |
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Thanks for the invitation to post.
Just found this site and it is in the absolute nick of time. I have been to a Neuro. for 3 years and she is trying to help me but all of the popular treatments seem to really cause me trouble with servere asthma or anxiety which I have never had before. I had CH begin in the 70's and then they left me until after treatment for cancer in 1998. I got the flu and thereafter I have had 8 month cycles of CH with nothing to help. I am on a ns to numb the nerves and taking Verapamil..but no help there. Because of all of the steroids I took with my chemo the Doctor won't let me take anymore and they work, though it is a trade-in for my liver function! My CH's are cronic. I am at wits end when the pain begins. I own my own business and it makes things difficult when you get no sleep for days. I am willing to travel to find help. Any suggestions. Last time (two months ago) I ended up in ER the new Doc insisted on giving me a drug that I had a serious adverse reaction to previously, so I declined and that just made him take longer to treat me. BY the time I he authorized a shot the headache was over. What is that all about anyway? I have not had many trips to ER but 150mg of Demerol or substantial amounts of Morophine have knocked two cycles out over the past 2 years. Seems now Doctors don't want to give that to you. I know my body and am an educated person, how do you get through to these Doctors about the pain and the way in which it effects one's life?
Well I feel better now and hope that posting this will bring some new thoughts my way. I live in IDaho and winter seems to be a better time of year for me regarding the CH thing. SO hello to you all and thanks for being there to help and understand what this thing is all about.
Mykantu
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Little Deb
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Re: Clusterville, Please Read (Alert! Non-Posters)
« Reply #20 on: Nov 21st, 2003, 5:33am » |
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Kantu,
Welcome to the board. There are alot of knowledgeable, hmmmm.....smart people here, that will give you lots of good advice.
My first thought, you didn't mention oxygen. Have you tried it????? They say 15 liters/min helps some.
Sorry you are in a pickle with your liver. But glad you are here, and hope to see your name alot posting. There is also a chat room we use at Headaches Support Group.com Come join us. And on the OUCH site, there are forms that your doctor can fill out and you can carry, so trips to the ER end up with better results. (hopefully)
We have all been there. Here is wishing you some relief. And a big WELCOME. Also, the convention is in Nashville in July. I am excited to meet everyone. Keep that in mind too.
You will find this home and a place to go when no one else understands.
Little Deb
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FrankW
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Re: Clusterville, Please Read (Alert! Non-Posters)
« Reply #21 on: Nov 21st, 2003, 9:17am » |
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Hi Folks
Been lurking your board for a few days - and staying in the closet till now. Middle of a cycle - first for about four years, the longest break ever - used to be weeks or months. Spent last night reading your comments - not sure whether the tears were from the pain or the frustration of discovering the damn thing had not gone away with time. Seem to remember the first attacks from the age of six or seven - almost 50 years ago. Just getting used to life without them.
I feel real sympathy for both children and parents when reading the page about children suffering - the benefit to parents from this site must be immense, and alone justifies its existance.
One of the few things I recall from childhood was the unbearable pain and banging or pushing my head on a wall while my parents were convinced it was just a sinus problem which could be eased by a heat lamp - I just recall being forced to endure that made it worse. Also made me to lay down in darkness when they finally figured it must be something else. First primary school just thought I was a bit of a wimp when I did not co-operate in seeing the school nurse - she wore a perfume which could - and did - trigger instant pain (I don't think she was happy with me telling her I could not stand her smell). Don't remember much else from my childhood - a shrink would maybe find some deep dark reason - I just remember pain.
Also had once a wife that couldn't really accept why perfume was a no-no. Plays hell with a relationship when she is prettied up ready for whatever and you develop a headache at the sight of her.
Treatments and diagnosis? I think I have heard it all and had it all. Morphine from one doctor who also suffered and asprin from most who didn't. Anti- inflammetry suppositories worked great for a while about ten years ago - don't seem to this time. Alcohol trigger when in a cycle - or some onion types at certain times of the year. Seen emergency rooms in many parts of the world - had the worst treatment in the most "advanced" countries.
One miracal cure from a very old lady herbalist in Sweden once many years ago when I was passing through - language barrier stopped me from finding the recipe or active ingredient. She died before I came back and learnt the language ( no - not from me torturing her to get the formula. Should have though - remember feeling the pain sort of drain away after one mouthful of what was the worst tasting salad I have ever had).
Been through many careers and relationships - didn't really accept how much was attributable to this particular demon until reading your page. Guess I have not really known life without it. Now I have my own little design bureau where hours or time off doesn't matter much.
I think I am babbling on a lot here - perhaps the first time I have explained anything knowing it would be taken seriously. Can't complain too much - I get one, or occasionally two, bouts same time every day lasting about three hours over about four weeks. Over the years I have developed a sort of bio - feedback state, where I can stay still in an almost catatonic state where the pain is at a just bearable level usually more or less vertical with my head against a wall or staring at something. Works until some bugger interupts me and it steps immediately back to too intense to stay still.
'Nough babbling - I guess I am just putting up my finger and saying "Hey - me too" I have met only one other - guy that thought - like me - he just had migraine. Caught him once weeping with his head pressed on the hood of a car. Right after he had tried accupuncture which triggered the worst HA he said he had for a long time.
Thanks for existing - even the relief of not being too alone is a help.
Frank
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thomas
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Re: Clusterville, Please Read (Alert! Non-Posters)
« Reply #22 on: Nov 21st, 2003, 9:23am » |
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Welcome Frank. That was one of the best posts I've ever read - Hey, you're not alone in your pain anymore.
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brain_cramps
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Re: Clusterville, Please Read (Alert! Non-Posters)
« Reply #23 on: Nov 21st, 2003, 9:30am » |
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Welcome Frank
Interesting story!
I shudder when I hear of children with CH. It makes me sick just to think of that much pain at that age, and having that part of life "taken away".
I'm pretty curious to find out what was in the "Swedish salad". It sounds interesting, to say the least.
On the left a re a number of buttons with an immense amount of information relating to CH. Sit down and start reading.
Glad you found us but sorry you were looking,
grant
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| « Last Edit: Nov 21st, 2003, 9:31am by brain_cramps » |
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