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Topic: Another newbie... (Read 361 times) |
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Emily
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Another newbie...
« on: Sep 26th, 2007, 5:02pm » |
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Hello,
And another new person introducing themselves.
I'm Emily, I'm 25 and have only recently been diagnosed with cluster headaches after suffering for about 6 months.
After reading some posts (and the kip scale), I'm feeling pretty lucky. I don't get woken up in the middle of the night, but I do wake up with them - the morning is always the worst time. I'm currently in a 3 week cycle and think I come under the chronic heading because the longest period I've been headache free since this started is 2 weeks. I also have never reached a 10 on the scale - thank god. Have I jinxed myself now? I get to a 9, but I don't pace and walk. I tend to rock back and forth, twitch my hands and feet quite a lot and squeeze my head. My headaches also switch sides - as do the runny, swollen eyes and the blocked nostrils! My shadows tend to be dull aches in my cheekbones and eyes and the lower part of my neck and skull feel like they're burning. I also get almost like a lock jaw, where I can barely open my mouth. Is this something that other people experience.
I'm looking forward to learning to live with this condition and how to beat the beast with the help of this forum.
I've just started taking indomethacin and will be starting o2 once it arrives. I have had a spell taking sumatriptan, but it was horrible. I reacted very badly. Am trying the water treatment too.
Will let you know how I get on!
Apologies for the long post. It's nice to feel like you're in a community of people who know what you're talking about and feeling and don't think you're completely crazy!
Em
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Linda_Howell
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Re: Another newbie...
« Reply #1 on: Sep 26th, 2007, 5:11pm » |
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Welcome Em,
I don't understand why you are worried about being chronic after only this short a time. The criteria for chronic, is one year, unmedicated with no break. Also indomethacin is usually prescribed and works great for CPH, but is way less effective for Cluster headaches.
You may want to ask your Dr. for another abortive like Zomig, Amerge, or any one of the other meds listed to the left here.
You are right on the money with the 02 however, and I'd like to suggest drinking one of those high energy drinks like 'rock star' or 'red bull' at the first sign of a HA. Strong coffee, ice packs too.
Linda
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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Wayne
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RedBull Rules!!
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Re: Another newbie...
« Reply #2 on: Sep 26th, 2007, 5:12pm » |
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Hello Emily
Sorry you need to be here but very glad you found us! Welcome to the family.
I'm sure that what you learn here will make the world of difference to the way you handle this CH thing, knowledge is power.
A bit of wisdom for you if I may - Redbull, sounds wierd but dont knock it until you try.
Cheers,
Wayne
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| « Last Edit: Sep 26th, 2007, 5:15pm by Wayne » |
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Rosybabe
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Re: Another newbie...
« Reply #3 on: Sep 26th, 2007, 8:50pm » |
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Welcome to Clusterville Em!
Keep reading, there is a lot of information here and in OUCHUK.
Hope you find the right combo of meds that will work for you.
Wishing you lots and lots of pain free time.
Rosy.
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George_J
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Re: Another newbie...
« Reply #4 on: Sep 27th, 2007, 1:18am » |
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Welcome, Emily.
Linda's right--I think you're on the right track with the 02. It's an effective abortive for about 70 percent of us. For an extensive treatment of the use of 02 for CH, see:
http://www.ouch-us.org/medications/oxygen/o2links.htm
Be sure to download the pdf file at the bottom of the page--the Supplemental Guide.
Best wishes,
George
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Ah! The foreigners put on such airs
Wearing the tangerine suits
And their harlequin eyes.
The pain they inspire
Draws in harmonica melodies
And the feathers of birds
Which flame up at their touch.
It all comes to light in the sheer
Debonair.
(Ellen)
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barry_sword
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Re: Another newbie...
« Reply #5 on: Sep 27th, 2007, 12:46pm » |
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Welcome Emily. Sorry you had to be here but you are with your new family now. Read lots and then read some more.
Good to hear you are going to give the o2 a try. IT WORKS WONDERS FOR ME!!
Barry
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bassman
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learning from all the fools and the sages
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Re: Another newbie...
« Reply #6 on: Sep 27th, 2007, 1:18pm » |
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this site is loaded with info so read, read and read a little more. the O2 is a life saver, and redbull is the necter of the gods. good luck
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it's all right now...but later?....forget it
thats later. now is now are you going to be here now
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barnythebear
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Re: Another newbie...
« Reply #7 on: Sep 27th, 2007, 2:27pm » |
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I found the site yesterday after my diagnosis and strangely it has made me feel better. Suppose it's the passing around of knowledge by people who know what it's like rather that a doc whose only treated it. I'm up for this Red Bull hopefully soon with vodka.
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Emily
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Re: Another newbie...
« Reply #8 on: Sep 27th, 2007, 5:28pm » |
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Couldn't agree with you more Barny!
I think I'd be more inclined to take advice from the fantastic people on this website who are living through it and actually understand it, than some doctor who has only come across it once or twice in the same period of years.
I'm lucky that my GP has said he'll prescribe me anything I want to try on the NHS after I got fed up waiting for a diagnosis and paid to see a private neuro. Fingers crossed he says yes to the o2 tomorrow!
Em
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barry_sword
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Re: Another newbie...
« Reply #9 on: Sep 27th, 2007, 5:43pm » |
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Fingers crossed for you too Emily. Must get on the o2 at the very first sign or twinge of an oncoming hit.
Do you have a supporter? If not you have a bunch now. Take care and hope this is a short cycle for you.
Barry
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Emily
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Re: Another newbie...
« Reply #10 on: Sep 28th, 2007, 3:39am » |
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Hi Barry,
I'l remember that. Feeling a little daunted by the thought of having o2 at home, but I guess it something to get used to.
My OH has been very good in this. He has kept his patience (most of the time!) and is very supportive. Nice to extend the network though!
Em
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sandie99
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Re: Another newbie...
« Reply #11 on: Sep 28th, 2007, 3:51am » |
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Emily,
lots of luck with getting O2! 
PF days,
Sanna
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CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
"No matter how far out your dreams are, it's possible" (Marketa Irglova)
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barry_sword
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Re: Another newbie...
« Reply #12 on: Sep 28th, 2007, 6:33am » |
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on Sep 28th, 2007, 3:39am, Emily wrote:Hi Barry,
I'l remember that. Feeling a little daunted by the thought of having o2 at home, but I guess it something to get used to.
My OH has been very good in this. He has kept his patience (most of the time!) and is very supportive. Nice to extend the network though!
Em |
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Hi Em, how are things today? I know what you mean by being daunted by having o2 at the house but you will be best friends with it in no time. When I got my script for my o2 I was very skeptical on having it anywhere near me but the first time I needed it and it worked I became bonded to it like it was a long lost friend.
Now it is everywhere with me. A portable in my car, big tank at home and another portable being set up soon at my work.
Glad to hear you have a supporter as that alone is a big help.
Now get that o2 setup ok!! Remember to get the non-rebreather mask to go with it. I have an extra (new one) if you cannot get one and I will send it to you if need be.
Take care,
Barry
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Guiseppi
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Re: Another newbie...
« Reply #13 on: Sep 28th, 2007, 10:18am » |
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Give your supporter a hug for all of us. My spouse...(of 25 loooong years!!!)...was the one who found this board for me and is still the best supporter a guy could ask for.
Then suggest he join the supporters corner. My wife enjoys going there and bitchng about what a pain in the ass us CH'ers can be with all the other supporters. A good place for him to gain a deeper understanding and maybe allay some of his fears. Once my wife realized they wouldn't kill me she became much better at acccepting them!
Good luck with the 02...the little green tank is my best friend when in cycle!
Guiseppi
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Linda_Howell
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Re: Another newbie...
« Reply #14 on: Sep 28th, 2007, 12:21pm » |
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Quote:| I'm up for this Red Bull hopefully soon with vodka. |
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Barney, I hope you have gleaned enough information in your short time here to realize that Alcohol is a TRIGGER for CH. Be careful with the Vodka.
Emily, that full bottle of 02 in my closet, in my bedroom gives me a really good feeling of security. I look at that ugly thng with love. 
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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Emily
New Board Old Timer
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Re: Another newbie...
« Reply #15 on: Oct 2nd, 2007, 3:32pm » |
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The o2 has arrived. It is really ugly. I haven't had to use it yet - my cycle has finished, thank goodness. Here's hoping it's a little while until I (and everyone else out there!) need to use it. Unfortunately, they just delivered a tank and a regular mask - like you'd get at a hospital. No diffuser or anything special.
Should I speak to the company who delvier this about getting special equipment and what do I ask for? It really wasn't explained very well by the doctor and the company were supposed to call me, but just showed up on my doorstep with the tank.
Feeling a little out of my depth and not knowing what to do!
Em
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