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Topic: I'm Not Alone (Read 264 times) |
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TBarger
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 Love this place, and I am just ME!
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I'm Not Alone
« on: Apr 12th, 2005, 1:31pm » |
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Greetings to All I can not believe I have found others with this OMG Pain in their lives. I thought I was cursed to have something my doctor called Cluster Headaches. Calling these "headaches"is like calling New York a small town, but anyway, it is so great to find others who know the pain. I guess we all get them a little different, mine are everyday, once a day, usually around 9pm or 2am. I served with the 10th Special Forces Group and thought I learned how to block out pain and overcome anything, these things make me cry like a big baby! If I could find a way to get this icepick out of my right eye I keep thinking it will be better . My pain lasts for about an hour give or take five minutes and it is then over, at least for that day. I have gotten where I am scared when the clock hits eight thirty, my wife begins her watch, and then we both just wait. This goes on for about two months, then they stop. They come back between a month to six months later, just to start it all over again. I couldn't stop laughing when I read the pain scale on this web site, it is SO true. When I tell people what I have they say, oh yea headaches, like migrains! They have no clue, and there is no way to make them understand. Well I am rambling, thank you so much DJ for having this sight and letting me know I am not crazy for walking from room to room pounding my head trying to find that dang icepick that is in my eye! Travis
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Just when you think you're going to make it through a day.....Bam....The Beast comes a knockin!
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SusieWong
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Re: I'm Not Alone
« Reply #1 on: Apr 12th, 2005, 3:12pm » |
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Hi Travis, You're not alone anymore. Everyone here understands what you are going through. You say that your pain lasts an hour. Do you have some medication to abort the pain? My husband uses Imigran injections or high flow oxygen. These stop the pain in about 10 minutes. He also takes Verapamil as a preventative. This lessons the number and the severity of the attacks. I hope you get some successful pain relief very soon. SusieWong
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Tomorrow is another day.
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seasonalboomer
CH.com Alumnus New Board Hall of Famer
    
 If I think hard enough maybe it'll go away.....
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Re: I'm Not Alone
« Reply #2 on: Apr 12th, 2005, 3:29pm » |
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Hey Travis, Welcome to cluster-land. As Susie mentioned, there are many who have found effective treatment to get them through these things. Read up mate! You'll find options that run the gamut from prescriptives to naturals and probably more feedback than you could ever hope for, for each treatment. The wide range is not specifically because "nothing works", it is because so many things work differently for different people. Just the act of reading and then taking information to educate your doctor about the options you might want to consider can give you a sense of some control over these damn things. This alone can mean something and give you something to work toward, rather than just the anxiety of waiting. Good luck and best hopes for being pain free. Scott
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----------------------------------------------------- seasonal boomer -----------------------------------------------------
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maffumatt
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Welcome Travis, so sorry you had to find us. Read, Read, Read, Knowledge is Power.
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TBarger
New Board Newbie

 Love this place, and I am just ME!
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Re: I'm Not Alone
« Reply #4 on: Apr 12th, 2005, 6:29pm » |
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Wow thanks for the responses so quickly. I just saw my Dr. today and she is looking into getting me oxygen, YES! I can't use the Imatrex due to the fact I have had five heart attacks, believe me the pain with those is not even close to the Demon and his merry band! I thank you for the info and I do plan on reading reading reading! I just can't tell you how good it feels to know you all are here and suffer the same pain and do the same dance.....well only two and a half more hours till the demons are on, so I better get myself ready. BTW what is the phantom or shadows? Are those the little bit of pain I get before the full blow Cluster? Thanks again, I feel I have been saved! Travis
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Just when you think you're going to make it through a day.....Bam....The Beast comes a knockin!
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TonyG1
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Hey Travis -- Welcome to the CH haven ... somewhat of a safe house for all those who share your pain! Sorry you're in pain!! Your hits sound a lot like mine... always the dreaded night time hits (terrors) for me as well. As others have said, much info to be had here and many, many ppl who understand your pain !! PFDANs to you !! Tony
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RichardN
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Re: I'm Not Alone
« Reply #7 on: Apr 13th, 2005, 1:25am » |
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Hi Travis and Welcome I can't use triptans (Imitrex) either (high cholsesterol and arterie blockage) . .. . 02 is my only abortive and I can kill the bastard in minutes if used at the onset of the attack. It's very important to get the correct regulator (15 lpm) and mask (non-rebreather) for maximum effect. Works for about 70% of us . . . and no side effects. Read the articles on kudzu . . . would ya' believe it? . . . . seems to be helping many folks. I haven't tried it yet because of other medications/ailments I need to consider before adding another supplement . . . but I'm very interested. Melatonin helps many with the night hits and there's lots of info on that here also. Much info/caring/sharing/ and giggles from people who truly know your pain. Read, read, read and feel free to ask any questions or rant or just "hang out" . . . . there's almost always someone here. Be Safe, PFDANs Richard
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I can live with the beast as long as I don't have to "dance" with the bastard.
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TxBasslady
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Bass fishin' is a h00t It's the catchin' that sux

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Re: I'm Not Alone
« Reply #8 on: Apr 13th, 2005, 1:55am » |
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Welcome to the board, Travis. For the nightime hits...try Melatonin. It works for alot of folks here. Glad to hear that your Doc is getting you the 02. Good luck...and let us know how you're getting along. PF vibes, Jean
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How lucky I am... to have known someone who was so hard to say goodbye too.
Take a kid fishin www.takemefishin.org
I adopted a Vietnam POW/MIA from El Paso, Texas!
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