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maggie_may
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Hi everyone! I'm new!
« on: Nov 15th, 2002, 7:49am » |
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hi, everyone! my name's maggie and i'm 24 from bergen county, new jersey. I've been suffering with what i believe to be CH for at least four years, but was just diagnosed, finally on monday, by a new neurologist. (my primary, i don't think knew about CH, and was trying to treat me like i had regular HA and migraine)
fortunately, i can say that i don't believe i've had an attack stronger than a K7-8, though frequently, i have daily lingering K2-3s. my boss is getting difficult to deal with too. i don't think she understands anything what i'm going through.
i'm lucky to have found a place like this. it's getting harder on my parents and my boyfriend to have to deal with me when i don't want to be bothered because i hurt so much. glad i have a place to come 
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Strength does not come from physical capacity. It comes from an indomitable will. - Mahatma Gandhi
The human spirit is stronger than anything that happens to it. - C.C. Scott
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LTBullitt
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Re: Hi everyone! I'm new!
« Reply #1 on: Nov 15th, 2002, 8:07am » |
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hey
i never know what to say to someone with CHs
guess you know the nitemare well enough yourself
a little haven in hell here
people here can help ya get through, and help alot!
not me personally b/c I'm the resident psycho but HELLO
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Ree
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Re: Hi everyone! I'm new!
« Reply #2 on: Nov 15th, 2002, 8:08am » |
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Hi... Maggie (can't say I love your other name) but anway... welcome to the family... on your left is a wealth of information and a cluster quiz just incase you thought there may be a chance that you dont have CH... You will find more information than any doctor can give you HERE... its amazing... We have had the best experience in fighting this battle since we found this wonderful site. Good luck God Bless and let us know how you are doing... Ree
(a little modifying here...) Bullitt your not a psycho just a genuine sufferer... how are you doing??? Hope you have a pain free weekend... Ree
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| « Last Edit: Nov 15th, 2002, 8:10am by Ree » |
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captdshea
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Re: Hi everyone! I'm new!
« Reply #3 on: Nov 15th, 2002, 10:02am » |
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Hi Lady- I happy to welcome you to this MB properly,
There is mountains of information here for you to help
yourself and your doctors in treating this curse. And most here are glad to help.
Don't woory about the jokesters and wannabe psycho"s
they are few and easy to disregard.
Wishing you pain free days and nights soon.
David
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"Seek knowledge and truth"
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Mark C
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Re: Hi everyone! I'm new!
« Reply #4 on: Nov 15th, 2002, 10:12am » |
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Welcome to the board Maggie,
Sorry you nedd us but glad you are here. There is much to learn so get busy on the links here and on the OUCH website to begin you CH degree. I have attached a link to a document on the OUCH that may help with your employer.
Good luck,
Mark
http://www.clusterheadaches.org/resources/employer_form.doc
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echo
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Re: Hi everyone! I'm new!
« Reply #5 on: Nov 15th, 2002, 10:37am » |
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Welcome to the family of CH supporters and sufferers. Sorry to hear you have been diagnosed with CH but glad to know that you have finally found out.
PFDN
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"If you love something, let it go. If it doesn't come back, hunt it down and kill it".
Proud Dad of a US Marine, and a former Marine turned Police Officer.
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brad267
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Re: Hi everyone! I'm new!
« Reply #6 on: Nov 15th, 2002, 10:48am » |
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Hi Maggie,
Welcome aboard! These guys are smart (and smart asses). Soak it all up, and you'll be so ahead of the learning curve when dealing with Dr's, Insurance, Family, etc. It'll take some of the stress away, which helps a little.
Best of luck to you,
Brad
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-- He felt that his whole life was some kind of dream and he sometimes wondered whose it was and whether they were enjoying it.
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maggie_may
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Re: Hi everyone! I'm new!
« Reply #7 on: Nov 15th, 2002, 11:15am » |
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thanks everyone for all the support! i was really scared going into this thinking there was no explanation for what i was feeling. now i know there are other people out there who feel it too.
ree...  honestly, i didn't think about my SN before signing up. that's what it is for everything else that i do on the net. not meant to be mobid or anything, she's just my favorite comic book character
mark... thanks for the form. i'll be doing some printing and giving to my boss. maybe she'll understand then.
just a quick question for all you out there, when you get an attack and you're at work, how do you deal with it? what do you do? recently, every time that i've had an attack i went home - usually because after the main attack goes away, i feel like crap for the rest of the day and even get smaller follow up ones.
maggie
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Strength does not come from physical capacity. It comes from an indomitable will. - Mahatma Gandhi
The human spirit is stronger than anything that happens to it. - C.C. Scott
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SFChris
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Re: Hi everyone! I'm new!
« Reply #8 on: Nov 15th, 2002, 11:57am » |
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Welcome Maggie,
I am lucky because while in cycle I was almost always hit in the evening (they tend to hit me at my most relaxed), but I was hit once at work. Luckily, my staff all knew (alot) about CH because I educated them (printed off material from here and OUCH). The time I got hit at work was so sudden and so intense that I literally ran out of my office - through the lobby and into the street (accompanied by my imitrix). I did the dance with the beast in the parking lot (putting a dent in a tree with head). When I ventured back into my office, my staff greeted me with steaming cups of black coffee, gallons of water, several boxes of tissues, and a big bag of ice from the cafeteria. They looked like they had seem a ghost!! But, the next day we all laughed, and they were so thankful that they knew how to support me. It helped with their fear, and my embarrasment. Education is key!
Chris
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| « Last Edit: Nov 15th, 2002, 11:59am by SFChris » |
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Mr. Happy
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Re: Hi everyone! I'm new!
« Reply #9 on: Nov 15th, 2002, 12:53pm » |
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****************
just a quick question for all you out there, when you get an attack and you're at work, how do you deal with it?
****************
Been wondering the same thing since day one myself, Maggie. Am too paranoid to leave the house for longer than an hour, let alone put in 8-10 hours of stress in the "Pits of the Conspiricy". Luckily, I am a _Domestic God_, and have had the relegated duty of raising our two cracker-spawn (See:Twins from Hell\Female\14), while my beloved future ex has been out slaving away in order to support me in the style to which I am accustomed. Keep this option open for future reference.......but I have to warn you...it sounds better than it lives!
Luckily, unlike most of the others here, I only get _truly hammered_ once a day, every day. The problem, as with most things in life, is timing. The Bastich began hitting me in my sleep (FOUL!) - first time ever, just started this cycle. Am working on a new clinical trial of my own to put the Mutha on a leash, and take it for a walk when _I_ want to go. Don't recommend this for anyone else with two bits of sense, especially Methodists.
The trick was to find the proper, quick, effective trigger, which for me, is alcohol in any form. For 3 nights, I slammed down 1 oz of Bicardi's Limon Rum at 6 PM on an empty stomach. 6:14 begins the twitch, and by 6:15 I'm at Ground Zero. 6:45, and the `triptan has kicked in.....I finish cussing myself out for being so stupid, but wind up done for the day & sleeping thru the night. Beauty, eh?
And before the rest begin flaming me for my idiocy, remember that this is just an idea, not necessarily a good one. At least the Bastich is jumping up on my lap at my command, not his! We'll see how long this lasts.
TTFN. Off to the imaging center for an MRI. The neuro wants to look at more dirty pictures........
Ow, ow, ow.................
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brad267
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Re: Hi everyone! I'm new!
« Reply #10 on: Nov 15th, 2002, 12:56pm » |
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Ditto what SFChris says.
I've had a couple people in my office give me practice shots of Imitrex, so they know what to do in case one sneaks up on me. When you explain to them, don't sugar coat it. Let them know it is a VERY DISTURBING site, and that you'll be all better 10-20 mins after the shot. Remind them not to call 911 or the work nurse, UNLESS you tell them, and that you're allowed X minutes to answer that question. Sometimes, although you hear the question, it takes you a few minutes to blurt out a response. If you can't answer in X minutes, then they use their judgment.
I was VERY nervous about having an attack at work -- you know, the vulnerability, the embarassment, etc. I eventually had a doozy at work, and that was the end of it. People understand so much better after "seeing" In a way, I was glad they got to see it. It put to rest, any doubts people had of how bad could this possibly be, and it shut up the "meegrainers." LOL
But you get to realize who your friends are at work. They're the ones that come running at a sprint at the first sign of trouble.
Yep, and they bring enough tissues, water, coffee, etc to last you weeks!!! LOL
Hope this helps,
Brad
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-- He felt that his whole life was some kind of dream and he sometimes wondered whose it was and whether they were enjoying it.
Douglas Adams (1952 - 2001), "The Hitchhiker's Guide to the Galaxy"
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brad267
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Re: Hi everyone! I'm new!
« Reply #11 on: Nov 15th, 2002, 1:01pm » |
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Go Happy! Go Happy! Make that son of a bitch dance on your dime, for a change. CH and no sleep = bad news. And..... you get to drink booze! YAY!
-Brad
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-- He felt that his whole life was some kind of dream and he sometimes wondered whose it was and whether they were enjoying it.
Douglas Adams (1952 - 2001), "The Hitchhiker's Guide to the Galaxy"
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Slammy
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Re: Hi everyone! I'm new!
« Reply #12 on: Nov 15th, 2002, 1:57pm » |
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on Nov 15th, 2002, 12:53pm, Mr.Happy wrote:
And before the rest begin flaming me for my idiocy, remember that this is just an idea, not necessarily a good one. At least the Bastich is jumping up on my lap at my command, not his! We'll see how long this lasts.
TTFN. Off to the imaging center for an MRI. The neuro wants to look at more dirty pictures........
Ow, ow, ow.................
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You're kinda "out there" aren't you, Mr. Happy? ;D
Slammy 8)
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That's it! Everyone out of the pool!
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domm
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Re: Hi everyone! I'm new!
« Reply #13 on: Nov 15th, 2002, 5:40pm » |
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Maggie - welcome to the family, sorry you had to pick this band of crazies.. ;D A couple of suggestions - over on the OUCH board is a printable letter for use at work. It explains CHs and what YOU must do when you get hit. Also, I have a small bottle of oxygen in a shoulder strap carrier that I take with me. When push comes to shove, I pop an Imitrex and hit the O2 after I close my door.
You didn't mention any preventatives. I hope you are exploring those also. Verapamil has worked very well for me.
Hand in and welcome
domm
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Azrael
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Re: Hi everyone! I'm new!
« Reply #14 on: Nov 19th, 2002, 3:24pm » |
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Welcome to the board! Sorry that the beast is grinding your cranium into a clusterhead spread to eat with crackers. Good luck!
PFDAN.............................. Drk^Angel
PS... About the whole werk thing... I just stay at my desk and "deal" with the beast however I can. The people I work with avoid me while I'm in cycle, and fear me during an attack, so I don't have to worry about being disturbed.
DA
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Cerberus
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Re: Hi everyone! I'm new!
« Reply #15 on: Nov 19th, 2002, 8:26pm » |
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The people I work with avoid me while I'm in cycle, and fear me during an attack, so I don't have to worry about being disturbed.
Agreed very effective.....The look of fear in their eyes when they have no idea whats going on can work to your advantage ;D
but really most of my co-workers have seen me during an attack and really finally stepped up to offer help when needed. I'm lucky.
welcome
Cerebus
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Bob P
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Re: Hi everyone! I'm new!
« Reply #16 on: Nov 19th, 2002, 8:42pm » |
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I sent an e-mail to my entire office explaining what clusters were and what they should do if I get an attack, ie. leave me the fuck alone!
I keep a small O2 bottle in my office and just close the door and suck.
My boss is understanding. He even encouraged me to put in for workers comp but it's not my style.
Pop a tab of cafergot, suck the O2 for 15 minutes and I'm good for the rest of the day.
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Charlie
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Re: Hi everyone! I'm new!
« Reply #17 on: Nov 19th, 2002, 9:24pm » |
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Welcome Maggie and be sure you pound into your co-workers that this isn't a headache. It's a sydrome of indescribable pain that hates to let go.
I'm sorry you are hosting this horror but, aside from the lunatics here, (It's a wonder I can keep them under control)  there is a wealth of information and if you stick around, you'll find some good ideas and tons of support.
Charlie
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Charlie
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Re: Hi everyone! I'm new!
« Reply #18 on: Nov 19th, 2002, 9:31pm » |
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By the way Mr. Happy. Glad you decided to teach us how things are done in your dimension.
You're making my days. 
Charlie
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There is nothing more satisfying than being shot at without result---Winston Churchill
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Lori
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Re: Hi everyone! I'm new!
« Reply #19 on: Nov 19th, 2002, 11:11pm » |
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wELCOME Maggie Sorry that you have a reason to be here but am glad you at least found this site since you do need it. I hope you find relief quickly from the pain and your cycle ends soon. Keep us posted on how you are doing.
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Blessings and PFDAN,
Lori
Psalm 23:4 ~ Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me.
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