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Topic: Newbie (Read 335 times) |
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kekahbah
New Board Newbie
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I happened upon this site last night after battling with CH, I had no idea there was such a large group out here. I have been suffering with CH for the past 11 years, they started when I was 19 and in college. This current cycle has been a particularly tough one for me, but I am lucky to have a doctor who seems to understand the severity of the pain. I am just starting Oxygen today to go along with Verapamil as preventive and Maxalt-MLT for abortive. I look forward to chatting and getting to know my fellow clusterheads.
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jonny
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Welcome Keka,
Pull up a seat and read your ass off.
.............................jonny
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cathy
CH.com Alumnus
New Board Hall of Famer
Not all those that wander are lost......
  
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Posts: 2267
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Re: Newbie
« Reply #2 on: Apr 8th, 2003, 4:14pm » |
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Kekahbah
Cathy 
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My own tears would mean nothing to me, if I could stop you from just shedding one....
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firebrix
New Board Hall of Famer
I must never weaken.
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Re: Newbie
« Reply #3 on: Apr 8th, 2003, 4:34pm » |
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Welcome kekahbah!
Good to meet you but sorry you need this site.
Good luck with the O2 - it helps many people
Wishing you PFDAN
firebrix
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"All that it takes for the triumph of evil is for good men to do nothing."
Edmund Burke
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2late
New Board Hall of Famer
Ride Free..Pain Free
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Re: Newbie
« Reply #4 on: Apr 8th, 2003, 6:23pm » |
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welcome "home" good luck with the 02, for me it rocks! make sure you use it right, read up & ask questions. good luck. ..........Jack
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catlind
CH.com Alumnus
New Board Hall of Famer
Taz taught me the cluster dance
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Re: Newbie
« Reply #5 on: Apr 8th, 2003, 6:30pm » |
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Welcome Aboard Keka,
The family always has room for one more at the dinner table here in clusterville. Unfortunate we have to exist, but as a large group we are making great strides to inform the medical community. You will find here a group of people who will help you through even your worst battle, and they will show you support in a way no other can, because we know the pain you know.
Grab an oar and start rowin!
Cat
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A true friend is someone who reaches for your hand and touches your heart
If yer gonna be stupid, ya gotta be tough
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jimmers
CH.com Alumnus
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Hello GOD! The gene pool needs some chlorine!
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Re: Newbie
« Reply #6 on: Apr 8th, 2003, 7:40pm » |
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Welcome aboard!
Stick around, most of us don't bite! LOL
Seeya,
Jimbo
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I don't suffer from INSANITY; I'm enjoying every minute of it!
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don
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Welcome aboard.
You found us like most do, desperately typing CH in to the search engine.
See the big yellow OUCH link to the left. Push it and join the Organiization for Understanding Cluster Headaches.
Membership is free.
Welcome home bud!
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Azrael
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Sometimes... Being good just ain't worth it.
  
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Re: Newbie
« Reply #8 on: Apr 8th, 2003, 9:57pm » |
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Welcome to the board! Sorry that the beast is blasting your cranium into a million little bloody, smoldering pieces with his version of a bunker buster bomb. Welcome to the family! Good luck!
PFDAN................................. Drk^Angel
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"Hello police? I would like to report a robbery. Someone stole all my beer while I was drunk."
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Callico
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Proud Dad of a US Marine!
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Re: Newbie
« Reply #9 on: Apr 8th, 2003, 10:04pm » |
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Glad you found us!
You will find no more caring or knowledgeable people anywhere.
jc
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"When He acts on the left, I cannot behold Him; He turns on the right I cannot see Him. But He knows the way that I take; when He has tried me I shall come forth as gold." Job23:9,10
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cootie
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sumday I'm gonna be sumbody........ ..
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Re: Newbie
« Reply #10 on: Apr 8th, 2003, 10:09pm » |
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Welcome kekahbah.....a good time is had by all on here Pam
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Cause and Effect......"Cause is the effect concealed, Effect is the cause revealed"
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Charlie
CH.com Alumnus
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Happy to be here
 
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Re: Newbie
« Reply #11 on: Apr 8th, 2003, 10:58pm » |
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Welcome to our ward kekahbah. Stick around and do some reading. If you do, I promise you'll find something here to help in some way...if only to cope better. There are several things here too that can help with pain. Here's mine:
Dr. Wright's Circulatory Technique
This is not transcendental meditation, imagery, relaxation, or anything psychic. It's entirely physical and takes a lot of work and concentration. Give this method a good workout. It’s not a miracle, but it’s been helpful to many.
When I was diagnosed, my neurologist said to treat this as a vascular problem. I was told to concentrate on “redirecting” blood circulation in order to retard flow to the head. This is done by trying to “send” blood into the arms and hands or other extremities. When properly done, your hands will become warm and redder with increased circulation. I also found it easier to concentrate on one hand.
This relieves just slightly, the pressure on the affected vessel, which indirectly causes our pain. We all have this ability but it can be exhausting. I was often able shorten my attacks from about half an hour to no more than a few minutes. Sometimes, when awake, I could entirely abort the attack IF I KEPT AT IT. Often, I would suffer only minor discomfort instead of excruciating pain. Do not stop just because your hands are warm or redder. Keep this up until you are sure it's subsided. If you let up or lose concentration, it’s very hard to restart this process. It may take some time but when this works, the relief is almost immediate.
I learned this from the doctor in a few minutes. He simply told me to try to keep blood away from the head. He thought it easiest to concentrate on the arms and hands but any place that works for you is fine. He said to think of it as "filling your hands" with redirected blood. It’s important to keep at it THROUGH the pain. This will be difficult, but it’s the only way this technique will work. Don’t let up until you are sure the attack has ended.
This will not always work, but I think it will always have at least some effect on the severity and duration of the attacks. It can be useful between medications or while waiting for some other drug to take effect. All it takes is a little practice. It was fairly easy to learn and what I'm writing here is more than I got from the doctor, as I've drawn from my own experience.
When awakened in horrible pain, it’s very hard to focus, but I think it’s always worth a try. This costs nothing but hard work, is harmless, non-invasive, and it gives us a fighting chance.
I wish you the best of luck - Charlie Strand
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There is nothing more satisfying than being shot at without result---Winston Churchill
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fubar
CH.com Alumnus
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Re: Newbie
« Reply #12 on: Apr 8th, 2003, 11:43pm » |
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kekahbah,
I hope you find this family to be as entertaining as you find it informative, supportive and resourceful.
I'm no expert on the oxygen, but here's my experience so far.
I too found new relief with the oxygen, but not until I was using it correctly. A non-rebreather mask is very important, yet most oxygen supply places don't even know what they are. They are the masks with a bag under them. You'll find you need an oxygen flow greater than what is commonly available too. I find I need somewhere over 8lpm and less than 15 lpm, but most oxygen regulators don't go past 7 lpm. I guess this is because it's not normal to deliver full lung capacity flow of oxygen for treatment. Alas, we are not normal.
Also, those oxygen 'concentrators' that they try to sell you or convince you are 'cool' really suck because their efficiency at their pathetic maximum output (again, 7-8 lpm) is less than 100% oxygen. (I think it's near 90%)
Anyway, you have to find:
- non-rebreather oxygen mask
- high-flow regulator
For the mask, there are links here where you can buy online (less than $2). Or, gimmie your address and I'll send my 1 extra to you.
For the high flow regulator, hopefully your oxygen supply place will know what one is. They seem to be totally clueless where I am.
-Fu
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| « Last Edit: Apr 8th, 2003, 11:45pm by fubar » |
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"He who has a why to live for can bear almost any how." -- Friedrich Nietzsche
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Mikey
New Board Hall of Famer
Rock till ya Drop and DON'T mess with the FAM!!!!!
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Re: Newbie
« Reply #14 on: Apr 9th, 2003, 3:12am » |
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Welcome aboard Kekahbah,
Ask all the questions you want to, but it's even better to
read, read, and read some more first.
We have fun and get very serious when we need to.
Mikey, 
PS Jimbo, Jonny might! LMAO!
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I love to ROCK very HARD!!!
CHRONIC and going crazy!! Want to come too?
Hope for PFDAN, peace and safety to you all!!
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