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Topic: Has anyon ever beat the beast? (Read 5995 times) |
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ClusterChris
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Has anyon ever beat the beast?
« on: Apr 22nd, 2007, 10:04am » |
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Is there anyone that has actually beat the beast? I know it's probably been asked a million times and I appologize. Just curious. Beat meaning gone for lets say 10 years. Thanks
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Guiseppi
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Re: Has anyon ever beat the beast?
« Reply #1 on: Apr 22nd, 2007, 10:08am » |
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For our active posters I think Johnny and Bob are the 2 reigning champions with several years in remission. They wil both tell you they consider themselves in remission and are ready to do battle again if he shows up.
That being said, most of us kick his ass on a regular basis! I stay armed with oxygen, lithium, cafergot and imitrex jabs. AS a result I'm no longer afraid of him like I used to be. I look him in the eye and say "Bring it!"
Guiseppi
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ClusterChuck
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Re: Has anyon ever beat the beast?
« Reply #2 on: Apr 22nd, 2007, 2:31pm » |
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Nope, Guiseppi, Charlie is the long timer. Around 14 years pain free!
And YES, Chris, most of us have, and continue to beat the beast! Beating the beast does NOT mean going many years pain free. It means not letting him win! Every time I survive a hit, and come out ready to do battle again, I have beaten him! 8 to 12 hits a day, and I beat that ba$tard EVERY time! Some times it takes a few hours, but I ALWAYS win, and beat him!
Let him win and beat me? NO WAY!
Remember, Life is beautiful ... When you are between hits! You HAVE won, and beat him!
Chuck
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ClusterChris
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Re: Has anyon ever beat the beast?
« Reply #3 on: Apr 22nd, 2007, 2:39pm » |
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thanks for the optimism. But I seem to be a little more pesimistic. The bastard has been winning for 17 years now. Yes the pf time is great however we should not have to look forward to pf time in the first place. Wish I could feel the same as you, but the bastard has done a hell of a job making my life hell.
Pf time to all of ya and thanks for the replies!
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TxBasslady
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Re: Has anyon ever beat the beast?
« Reply #4 on: Apr 22nd, 2007, 3:10pm » |
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Keep in mind....that the beast will take whatever time you're willing to give him.
He loves it when you allow him to alter your lifestyle. He wallows in your depression and will give you as much grief as you're willing to take.
Call it a mindset....whatever you wish, but this can be controlled to an extent. It takes much time, sometimes..to find the right combo/cocktail to fight back.
I fought like hell....and eventually reached the point where I realized that the more meds I tried...and took, the worse my CH became.
I went med-free, January of 2005. I got a script for 02, and am proud to say that the 02 works for me 100 % of the time.
It's not easy for everyone, and certainly is not the solution for everyone. I have not and will never push my choice of going med-free on any CH'er. This was just my personal choice and by far, the best choice I have made CH wise.
Jean
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ClusterChris
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Re: Has anyon ever beat the beast?
« Reply #5 on: Apr 22nd, 2007, 4:02pm » |
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I am very lucky as well, a half a shot of imitrex in the leg works i'd say 98% of the time for me! Just too bad i didn't have it for the whole 17 years.
Thanks for your reply.
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chewy
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Re: Has anyon ever beat the beast?
« Reply #6 on: Apr 22nd, 2007, 9:48pm » |
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I'm coming up on 5 years cycle free.
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Brew
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Re: Has anyon ever beat the beast?
« Reply #7 on: Apr 22nd, 2007, 11:09pm » |
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I beat the beast every single day.
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vietvet2tours
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Re: Has anyon ever beat the beast?
« Reply #8 on: Apr 22nd, 2007, 11:19pm » |
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two years eight months pain free.
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BMoneeTheMoneeMan
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Re: Has anyon ever beat the beast?
« Reply #9 on: Apr 23rd, 2007, 12:14am » |
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on Apr 22nd, 2007, 11:09pm, Brewcrew wrote:| I beat the beast every single day. |
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I hear ya. I beat the beast this morning at 2:30, 6:00 and at 7:30.
Winning feels good.
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starlight
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Re: Has anyon ever beat the beast?
« Reply #10 on: Apr 23rd, 2007, 12:05pm » |
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Don't give up hope that you could go into remission. I have read that people can "outgrow" the headaches when they are older if they have been getting them for a while. Also people can start to skip several years inbetween cycles (if they are episodic) so that is reason for hope.
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seasonalboomer
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Re: Has anyon ever beat the beast?
« Reply #11 on: Apr 23rd, 2007, 12:49pm » |
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My life was changed by learning how to tame the beast. Input from this site allowed me to build an arsenal that helps me beat back the beast whenever he shows up. The beast no longer has the power in my world that he used to.
My father (also a clusterhead) did have a 5+ year remission prior to his chemo-issue that triggered a bout for him. His extended remission came on for him at close to 60 years of age.
I stay actively engaged in making certain I have the tools necessary for the battle even when I'm not in cycle. Both emotionally and pharmaceutically.
Scott
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Sandy_C
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Re: Has anyon ever beat the beast?
« Reply #12 on: Apr 23rd, 2007, 2:31pm » |
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on Apr 22nd, 2007, 2:31pm, ClusterChuck wrote:Nope, Guiseppi, Charlie is the long timer. Around 14 years pain free!
And YES, Chris, most of us have, and continue to beat the beast! Beating the beast does NOT mean going many years pain free. It means not letting him win! Every time I survive a hit, and come out ready to do battle again, I have beaten him! 8 to 12 hits a day, and I beat that ba$tard EVERY time! Some times it takes a few hours, but I ALWAYS win, and beat him!
Let him win and beat me? NO WAY!
Remember, Life is beautiful ... When you are between hits! You HAVE won, and beat him!
Chuck |
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This is beating the beast. Beautifully said, Chuck.
Sandy
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ClusterChris
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Re: Has anyon ever beat the beast?
« Reply #13 on: Apr 23rd, 2007, 2:34pm » |
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I found this while searching the post archives from 1998. Anyone know if he is still around???
I suffered from Cluster headaches from the age of 13 through 33. The article I downloaded from this site is right on the money. I wish this information was around years ago. I have not had a cluster headache in about 12 years. During those years I went to Montefiore Headache Clinic in NYC which diagnosed my headache problem as TMJ and sent me to a dentist. Back then I do noth think they even recognized Cluster headaches. During the years I have tried Lithium, Propanol, Calcium channel blockers, ergotomine, prednisone, Elavil, Endep, Bellergal, and probably some other meds I cannot remember, along with Fiorinol, Codeine and Demerol. Sometimes I thought some of these meds might be working, but I was never sure if it was the medicatiion or the end of a cycle when the headaches would stop. The one treatment that absolutely worked for me was Oxygen. I think I read about it at the time in Parade magazine and decided to try it. It stopped the headache or aborted the headache after about 5-10 minutes of breathing through a mask. Although the headache might come back, the oxygen would always get rid of it. I still have tanks of Oxygen in the basement and hope I never need them again. I have to believe that the pain from a Cluster headache is some of the most severe a person can endure. I can remember thinking to myself during an episode that I would gladly cut off a finger, etc., if it would get rid of the headache.
David Kolb <DAKOLB@COMPUSERVE.COM>
Westfield, NJ USA
Tuesday, May 05, 1998 at 12:37:35 (EDT)
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Guiseppi
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Re: Has anyon ever beat the beast?
« Reply #14 on: Apr 23rd, 2007, 2:39pm » |
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I don't recognize the name but strongly agree with the oxygen advice. Has been and continues to be my first line abortive.
Guiseppi
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ClusterChris
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Re: Has anyon ever beat the beast?
« Reply #15 on: Apr 23rd, 2007, 4:13pm » |
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i am going to ask my doc about the oxygen (last doctor refused to give it to me) I have since gotten a new one and this will be my first appt with her while in cycle. i can't see myself trying just the 02 though, maybe for 5 minutes then i'm givin myself a hit of trex. Wich always works. Ahh maybe i'll get brave and tough one out! I'll let ya know if i get it or not, my appt is in 20 minutes!
Talk to yas later!
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Sandy_C
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Re: Has anyon ever beat the beast?
« Reply #16 on: Apr 23rd, 2007, 4:42pm » |
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on Apr 23rd, 2007, 4:13pm, ClusterChris wrote:i am going to ask my doc about the oxygen (last doctor refused to give it to me) I have since gotten a new one and this will be my first appt with her while in cycle. i can't see myself trying just the 02 though, maybe for 5 minutes then i'm givin myself a hit of trex. Wich always works. Ahh maybe i'll get brave and tough one out! I'll let ya know if i get it or not, my appt is in 20 minutes!
Talk to yas later! |
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Look at it this way Chris. Oxygen, 02, is not a foreign drug to your body, it a natural part of your body. Nobody, including me, will ever say that you cannot overdose on 02, but I don't think that's likely.
Trex, on the other hand, IS a drug. Trex workes magic on clusterheadaches, no question. Been there, done there, used it. But, because it is a drug, it has side effects that for some of us, me specifically, cannot live with. I can't use trex any longer because of the problems/damage is did/can do to the heart.
So, my choice is 02. It's now my only abortive. I use one of the alternative methods as a preventative. So far, I have been able to abort every single hit within 5 minutes. Granted, none of those hits have gone over a K7, so I don't yet know how 02 will work on a gigrundous one, but I have faith that it will help.
Be brave, just a little. Try to rely on the 02 before hitting the trex. You might just learn that 02 can knock out the lower level hits, and save your trex for the biggies.
Just my two cents.
Sandy
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Linda_Howell
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Re: Has anyon ever beat the beast?
« Reply #17 on: Apr 23rd, 2007, 10:37pm » |
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Print this out and take it to your Dr.
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
I am always at a loss for words when Dr.s will not prescribe this. It just boggles my mind. It is THE safest, THE cheapest, THE most effective treatment out there.
 demand it. If you won't speak for yourself, give me your Dr's phone number. 
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ClusterChris
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Re: Has anyon ever beat the beast?
« Reply #18 on: Apr 23rd, 2007, 11:25pm » |
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well once again I was denied the oxygen. I explained everything to her and she said she's not going to deny that it does help however, she said the reason she won't prescribe it to me is that there has not been any clinical study in "Canada" to support it. So looks like I am screwed unless anyone here in Canada has some clinical info they can share with me so that I can present it to my Dr. Any clinical research done in the U.S. apparently holds no credit here. So i think I might be shit outta luck. 
Thanks once again for your great replies!
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Linda_Howell
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Re: Has anyon ever beat the beast?
« Reply #19 on: Apr 23rd, 2007, 11:44pm » |
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HMMM.
Chris, I have friends in Canada. Give me some time to contact them. They are Hockey fans. They take no prisoners either.
Linda
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BMoneeTheMoneeMan
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Re: Has anyon ever beat the beast?
« Reply #20 on: Apr 23rd, 2007, 11:56pm » |
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I dont understand why docs are hesitant to prescribe O2. U cant get high from it, u cant make drugs with it, whats the big deal?
I bet if you asked your doc for a narcotic like percocet or fiorinal, you would get it.
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Think of how stupid the average person is, and then realize half the population is stupider than that.
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ClusterChris
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Re: Has anyon ever beat the beast?
« Reply #21 on: Apr 23rd, 2007, 11:56pm » |
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I don't think there is such a thing as a Canadian thats not a Hockey Fan lol.
I'd appreciate anything you can dig up for me linda!
I'm in Welland, Ontario. (10 Minutes from Niagara Falls)
Thank You!
Chris
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Linda_Howell
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Re: Has anyon ever beat the beast?
« Reply #22 on: Apr 24th, 2007, 12:02am » |
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O.k. Chris...give me a day or two.
I was kidding on the Hockey thing. One other thing I cannot understand. Let us take 2 boards of wood, bash them around a field of ice, hit whoever comes your way with a brain smashing whack....yeah it doesn't get better than that. 
Margi forgive me.
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ClusterChuck
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Re: Has anyon ever beat the beast?
« Reply #23 on: Apr 24th, 2007, 12:22am » |
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on Apr 23rd, 2007, 11:25pm, ClusterChris wrote:well once again I was denied the oxygen. I explained everything to her and she said she's not going to deny that it does help however, she said the reason she won't prescribe it to me is that there has not been any clinical study in "Canada" to support it. So looks like I am screwed unless anyone here in Canada has some clinical info they can share with me so that I can present it to my Dr. Any clinical research done in the U.S. apparently holds no credit here. So i think I might be shit outta luck.
Thanks once again for your great replies! |
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SHIT SHIT SHIT!!!!!
I am SO pissed!!!!
Get a new doctor!!! That is SUCH bullshit!!!
DAMN DAMN DAMN !!!!!
Don't give me the doctor's name, cuz I am afraid of what I would do to that fucking idiot!!!
Chuck
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Batch
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Re: Has anyon ever beat the beast?
« Reply #24 on: Apr 24th, 2007, 12:31am » |
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Chris,
I don't know how it works in Canada, but I'd tell the lad to go back to med school and find yourself another doc that will work with you AND give you an Rx for medical O2, a Non-Rebreather mask, a regulator capable of delivering 100% O2 at 7 to 15 liters/min.
100% O2 is the best abortive for the most CH sufferers.
If you're stuck with the present doc... EDUCATE him! Many of us have had to do that at one time or another. Go to the "oxygen info" link at the right, print out a few pages and take them to the doc at the next visit.
You'll need a Rx for O2 one way or the other. Don't take "NO" for an answer.
Let us know how you're doing. Lots of folks have found ways to abort the beast... the real trick is to find a prophy that keeps it from coming.
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