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Topic: WELCOME! (Read 51195 times) |
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t_h_b
New Board Hall of Famer
primary chronic since 1999
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Posts: 527
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Welcome to all new ClusterHeads!
Words of advice borrowed from CJohnson (Curtis), another poster:
1. Find a neurologist you can rely on.
2. Formulate and employ a preventive strategy.
3. Formulate and employ an abortive strategy.
4. Use what you have learned to help others.
One way to help others (as well of yourself) in the words of yet another poster, Elaine:
I am fighting the only way I know how. I back O.U.C.H. anyway I can. Through O.U.C.H. the word WILL get out that Clusters are more than a headache. More research WILL BE done. More doctors and hospitals WILL know our needs. Insurance companies WILL know our needs. Along the way someone just may trip and fall over the cure!
There is a link to O.U.C.H. in yellow over to the left.
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| « Last Edit: Feb 16th, 2004, 3:13pm by t_h_b » |
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No, it's not a headache--it's a Stage Ten Primary Chronic Periodic Idiopathic Trigeminovascular Cephalalgic Crisis.
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Little Deb
New Board Hall of Famer
Please SPAY and NEUTER all dogs, cats and idiots!
 
 
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Posts: 1346
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Re: Welcome!
« Reply #1 on: Feb 10th, 2004, 7:08pm » |
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I shall bump this one, cause it is good......
And say hi to everyone while I am at it!!!!
Big Hugs....Little Deb 
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Adopt a shelter pet!
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fubar
CH.com Alumnus
New Board Hall of Famer
Gender:
Posts: 1933
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Re: Welcome!
« Reply #2 on: Feb 10th, 2004, 8:10pm » |
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If I grind this to the top...
does it mean I can say me and deb are doin the bump and grind?
oh nevermind
bump
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"He who has a why to live for can bear almost any how." -- Friedrich Nietzsche
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BlueMeanie
Guest
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WELCOME TO ALL THAT FOUND THIS SITE. YOU ARE NOT ALONE ANYMORE WHILE YOUR HERE.
SENDING PF VIBES TO ALL.
Bump to THB's post. Check for Meet & Greet events. It's a wonderful thing to talk to fellow Clusterheads if you get the chance.
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ClusterChuck
CH.com Alumnus
New Board Hall of Famer
The BEAST rises again, and again, and again, and .
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Posts: 3181
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Re: Welcome!
« Reply #4 on: Feb 11th, 2004, 12:35am » |
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To all newcomers, WELCOME ABOARD!
A few thing I would like to tell all of you. First and foremost, you need to read this link: http://www.clusterheadaches.com/history.html
That link tells the history of this site, and about our illustrious DJ. There is not a finer person on this earth!
Second, get to know the people here. There are some wonderful people here. One of the ways to get to know us better, is to go to the chat room that a sister site runs. To get there, go here: http://www.clusterheadaches.com/chat/ There is normally someone there after 10 pm east coast time. If no one is there, log on, and wait. Many of us will check there and, if no one is there we just go away, but if someone is there, we jump on in.
Get to know people, as you will form close ties with people that should last to the rest of your life. Exchange phone numbers. Talk on line, and talk on the phone to them. These people can be an unbreakable life line for you, and you can be for them.
Use this site to air your problems, questions, complaints, cry, whine, scream, shout, or whatever. We are here to help you in any way that we can. The one thing that we ask of you, is to give your support to others, also. We are sufferers, and we are supporters. As DJ said, this site is a help to us, in that we can get information and support, but we also get tremendous satisfaction from helping our brothers and sisters.
If you ever get a chance to meet another clusterhead or supporter, do so! There is no better time than meeting them in person! The bond is instantaneous! And do not let the fact that you are in cycle stop you. I have been to two of them, so far, and at both of them, I was getting hit. All I did, was go to another room (I am the type that wants to be alone), suck on my oxygen, and when done, go back to the group. Everyone knew what was happening, yet no one freeked out over it. They were there if I needed them, but knew enough not to force themselves on me. You could see the love and vibes in the eyes of each and everyone of them. This is the only place where you can get hit, and everyone will know what you are going thru, and no one will tell you "Oh, it's just a head ache! Deal with it! Take a couple aspirins, and you will be fine."
Sorry for being so long winded, but the above are things that have been such a life line for me, and almost every other clusterhead here. Many of us say, that if it was not for this site, I would be pushing up daiseys. That is not just a phrase, it is the God's honest truth. When you are praying for your fellow clusterheads, and their families, give a special thanks to God, or who ever you pray to, for DJ and his amazing creation! Also, thank DJ directly. He doesn't post much anymore, but he DOES read all posts.
Thank you DJ!
We are a family. Welcome to the family, and welcome to my heart.
Chuck
Modified to update to new chat room
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| « Last Edit: Apr 5th, 2007, 9:22pm by ClusterChuck » |
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"No man can be happy without a friend, nor be sure of his friend till he is unhappy."
Thomas Fuller
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stevegeebe
CH.com Alumnus
New Board Hall of Famer
I love YaBB 1G - SP1!
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Posts: 1342
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Re: WELCOME!
« Reply #5 on: Feb 11th, 2004, 8:02pm » |
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Well said Chuck.
Man there's a lot of new people lately!?
Steve G
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JDH
CH.com Alumnus
New Board Hall of Famer
We will get by, We will survive!
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Posts: 2453
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Re: WELCOME!
« Reply #6 on: Feb 12th, 2004, 12:35pm » |
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Welcome home new people 
Read all you can find and tell us a little about yourselves. There's a lot of good info and good people here so stick around.
on Feb 11th, 2004, 8:02pm, stevegeebe wrote:
Man there's a lot of new people lately!?
Steve G |
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There sure is Steve.
I wonder if there are times of the year when we see more newbies than at other times. I'm thinking Spring and Fall.
Jim
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9-11-01, to remember is to honor.
It's not what you know, it's what you can prove.
ECH established 1985
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stevegeebe
CH.com Alumnus
New Board Hall of Famer
I love YaBB 1G - SP1!
Gender:
Posts: 1342
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Re: WELCOME!
« Reply #7 on: Feb 12th, 2004, 10:15pm » |
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Must have been a cloudy day for Punxsutawney Clusterhead.
We're in for an early spring.
Oh boy!
Steve G
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Mr.YL
New Board Junior
I love YaBB 1G - SP1!
Gender:
Posts: 65
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Re: WELCOME!
« Reply #8 on: Mar 12th, 2004, 12:02am » |
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Saddled back up;
on the ship again,
no bailing
on this ship
The titanic was lost, but we got a good crew...
keepin in check, had one sent
the vents been cleared, you are all so dear
row row, toot toot.
thank you...Mr.YL
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keep livin clean...
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Tiannia
New Board Hall of Famer
Life does not apologies......
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Posts: 3241
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Re: WELCOME!
« Reply #9 on: Mar 27th, 2004, 12:36am » |
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WOOT Thomas you have been stickied!!!!!!!!!!!!
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The curious paradox is that when I accept myself just as I am, then I can change. - Carl Rogers
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Tiannia
New Board Hall of Famer
Life does not apologies......
Gender:
Posts: 3241
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Re: WELCOME!
« Reply #10 on: Mar 27th, 2004, 12:42am » |
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on Mar 26th, 2004, 8:56pm, xorn wrote:
ok sorry I have to ask what is mud?
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The curious paradox is that when I accept myself just as I am, then I can change. - Carl Rogers
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xorn
New Board Newbie
This Really SUCKS
Gender:
Posts: 8
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Re: WELCOME! MUD
« Reply #11 on: Mar 27th, 2004, 2:35am » |
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MUD means Multi User Dimension.
It is a three dimensional world but it is all in text.
Most have fantasy themes.
So it is basically Dungeons and Dragons online.
And I've played for many years.
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tlc4all
Guest
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Thanx Chuck!
I am honoured and will happily claim my space in your heart. Preverably deep in2 1 of the corners 2 ensure U do not lose me.
tlc2U and everybody U luv[color=Orange][/color]
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djsdds
New Board Newbie
CRAZINESS!!
Posts: 7
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Re: WELCOME!
« Reply #13 on: Mar 29th, 2004, 10:20pm » |
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Hi!
I guess I'm the newest member. This is the greatest website I've ever seen. When I first started getting clusters I was 19. There were no computers or web for that matter, it was 20 years ago.
I'm a dentist, and it took until I was in dental school to get a correct diagnosis. We had a chronic pain instructer who was shocked that I was a young female with clusters! I'm so special!!
So here I am now, age 38. I have 4 kids, have never had a cluster during pregnancy (no, that's not why I have 4 kids!! LOL) My youngest is 3 now. I would get a cluster after each delivery and this time I've gone over 3 years without any! I prayed to God they were over in my life until March 9th at 2am they hit again!
I'm 20 days into it now and I think it's slowing down. I was waking up every 30 min to suck O2. Last night I only woke up twice! I try to avoid meds but I'm dependent on Oxygen.
O2 works well in the beginning of the cluster, and in the last weeks. NOTHING works in the middle days or weeks. In the past I've used an Ergotamine inhaler. That's like snorting alcohol (which of course, I'd do if it worked). I tried the Imitex inhaler this time which just made me sick!! So instead, I screamed, paced, cried, rocked like a crazy person and when it seemed to be coming down, I prayed the O2 would work next time!
This is like living in Hell!!
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HypnoticFreddy
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Hi my name is Scott and I sometimes feel like a new member, although I really first visited this site when I was diagnosed in the summer of 1999. The summer of complete utter Hell.
This site was of utmost importance than and still. I have not been proud of some of my postings lately, but I am past that.
I have spent more time reading lately, rather than posting, but feel it's ok to post now 
I also would like to know who DJ is, and if he/she is the creator of this website? If so, thanks. This site was my portal (especially in '99) into the world of CHs, and what they were, how they were treated, and of course the message boards where you realize other people have the same exact oddball condition.
Thanks to the creator of this website, whoever you are.
-Freddy (Scott)
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Superpain
New Board Hall of Famer
GOT O2!?
Gender:
Posts: 1351
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Re: WELCOME!
« Reply #15 on: Apr 2nd, 2004, 12:54am » |
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Yes. DJ is the almighty creator. HE has posted in your other thread... Go say hi.
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Chris
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bubbarube
New Board Newbie
Just Hanging In Here
Gender:
Posts: 6
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Re: WELCOME!
« Reply #16 on: Apr 6th, 2004, 3:12pm » |
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Hello Everyone, I am brand new to this site! I just stumbled onto it! My husband has had CH's for 20 of our 26 years of marriage. We have raised 2 kids. The youngest being 16. Both kids have always been so terrified during one of their Dads CH. My husband like all of you that I read about have tried many, many drugs. None of which didnt work, till about 7 years ago and we found a Dr. about 5 hours from our home and he put him on a drug called [sansert]. Maybe someone has heard of this, if so let me know. He only takes it during a cycle, it has been 2 weeks now and they seem to be getting better. Not as severe, but as often 1 to 2 a day. I know I myself do not have the Ch's but wish it was me instead of him. It is so hard to watch cannot imagine being the one in the horrible pain. Please if any one has any new things to offer or just a word of encouragement let me know. Desperate in a small town!!!
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FZfan
New Board Old Timer
Not Insane
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Posts: 459
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Re: WELCOME!
« Reply #17 on: Apr 6th, 2004, 5:08pm » |
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Hi bubbarube and welcome. Sorry you had a need to find this site, but glad you did. Like many of us, you "stumbled" onto it not realizing it has been around for awhile.
There is a supporters corner here you might check out. After 20 years, I would think you would be pretty good at support.
I have no experience with sansert, but it sounds like a preventative. Your husband should also seek out a good abortive. If you've done a little reading around here, especially in the "getting to know you" board you've seen a lot of references to Oxygen. You didn't mention whether this was something your husband had tried or not. It's not necessarily a new thing to offer, but it is something that seems to get overlooked, or used incorrectly. In my case, I had been using it incorrectly until I found this site. There is an oxygen info button to your left. Definitely check this out. Breathing high flow rate o2 with a non-rebreather mask at the onset of a cluster attack is very effective at aborting the attack for many of us. If it's not something your husband is currently doing, do it! It certainly can't hurt. I know in my case I was only getting some relief with o2 until I started using it correctly. I couldn't believe the difference.
There are many other ideas/strategy's available here. With the help of a good doctor, I'm confident you can find something here that works for your husband. Grab all the info you can here and share it with your doctor. No one thing seems to exist that works for everyone, which is one of the things that makes it so frustrating to treat.
If you can get him to, have your husband read up on this site. I'm willing to bet he will be absolutely amazed at what he reads and will several times utter the phrase, "my god, that's me!"
Good luck to you folks, after 20 years of battle I'm sure you have some interesting war stories. Don't hesitate to post them. Even the bad ones.
Glen
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There is no such thing as a dirty word. Nor is there a word so powerful, that it's going to send the listener to the lake of fire upon hearing it. - FZ
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bubbarube
New Board Newbie
Just Hanging In Here
Gender:
Posts: 6
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Re: WELCOME!
« Reply #18 on: Apr 6th, 2004, 9:39pm » |
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Fzfan, Thanks for the response. Not sure if Im doing this right or not? Yes, we have many HORROR stories! Yes my husband has tried o2. But I wiil check out the o2 info, as he may have been doing it wrong! He has been on so many drugs, as a matter of fact the Dr. we had before the one we have now he had him on so many drugs at the same time, when we switched DR.'s we took the bag of drugs with us and I remember taking them out of the bag and Dr. asking ok which ones are you currently taking and when my husband told him all of them, he said {MY GOD MAN WHATS HE TRYING TO DO KILL YA!} I will try to find the supporters corner you referred to as I would like to help anyone that I can and have the mutual support myself, as it is so hard to watch the one you love. more than life itself in such horrible pain. It is so nice to have some one that knows what your talking about! So glad I found this very informative and friendly site. We personally dont know any one that suffers with the beast! All our friends and family try to understand but they have no clue. I almost get mad when people say yes I know what hes going through as I have severe sinus headaches, or its just a headache whats the problem? You have to witness one or worse yet suffer through one. Again THANKS for all the info! Going to check out oxygen info hope to learn something!
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Neslodine
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Hey. Myt name is Holden and I liev in Maine. Way up in Caribou. I am 28 years old. I have had clusters fore a long time I think. But I want to help. what can I do to help out? Do I need to give any moiney? I do not have much money.
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Little Deb
New Board Hall of Famer
Please SPAY and NEUTER all dogs, cats and idiots!
Gender:
Posts: 1346
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Re: WELCOME!
« Reply #20 on: Apr 24th, 2004, 9:44pm » |
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Visit the OUCH site if you haven't already. Lots of fundraisers going on....check around.
Welcome to all of the new people! So great to have you here.
Big hugs...Little Deb
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eddie
New Board Hall of Famer
PFDAN TO ALL
Gender:
Posts: 881
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Re: WELCOME!
« Reply #21 on: Apr 30th, 2004, 3:44am » |
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my name is eddie im new but i will figure this message
board out one way are another i cant believe after 19
yrs i figured out what has been killing me CH but next
week i go to the neruo i went to the er the other night
i have been chronic for a long time just getting info what
was wrong so i went to the er they gave me some shots
of somthing did ct scan ask me how i felt i told them it
was ch they gave me some o2 20 min later i started to
smile for a change that seem to make me feel better
but 3 days now its coming back hard i do feel bad now
so i cant wait to get to the doc next week o2 i believe
it helped alot i cant take to much more of CH i want the
doc to understand how bad it hurts 18 to 20 yrs
of this is enough! hope he will give me imitrex&o2
but keep in mind they had to look that info up but
i tried to be as nice as i could and that has been
hard for me lately see im irish and here lately it
seemed like i hated everybody but i dont i really
love life so thanks to this site & a sweet lady &
few people emailed me i got on the road to some
relief so THANKS ET
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| « Last Edit: Apr 30th, 2004, 4:02am by eddie » |
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PFDAN TO ALL>><< http://www.putfile.com/ededearl>>><music> http://www.myspace.com/pamneddie
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Little Deb
New Board Hall of Famer
Please SPAY and NEUTER all dogs, cats and idiots!
Gender:
Posts: 1346
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Re: WELCOME!
« Reply #22 on: Apr 30th, 2004, 8:49am » |
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Welcome Eddie!!
Little Deb
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OneEyeBlind
New Board Hall of Famer
Yea, I can do this
Posts: 574
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Re: WELCOME!
« Reply #23 on: May 4th, 2004, 7:40pm » |
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Welcome to the board Eddie, the O2 works for lots of people here ... so keep on your doc and make him give you a script for it. It's easy to use, check out the button on the left for all the info you need to use O2 properly for CH.
Wishing you pain free times.
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One cannot step twice in the same river, for fresh waters are forever flowing around us.
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katethecelt
New Board Veteran
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Posts: 158
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Re: WELCOME!
« Reply #24 on: May 8th, 2004, 3:29pm » |
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Excellent Welcome post!
I hope everyone new to clusterville reads all the replies. The advice and support are great - as usual.
If anyone needs a clusterbud, just email or send me an IM. I've been gone so long, it's the least I can do.
It feels sooooo good to be back!
Kate
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