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Topic: Happy to have found this site (Read 386 times) |
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slimstitcher
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Hi All:
I just joined this group today. I think for the first time in 25 years I can say this is it!!! Since I was in my mid 20's I have had pain around my eyes, in my temples & around the back of my ears.This would go on for weeks at a time and at the time mostly in the spring. As I got older the pain seems to happen at any time of the year and I not only get what feels like pressure but ice picks in my temples. I have been through the huge aray of sinus antibiotics when I was much younger. Several years ago I switched Drs. and my new Dr. admitted I had migraines. So he put me on large doses of Depokate, Amitriptyline & Nadolol. All of which did nothing but turn me into a zombie. I finally weaned myself off of them this past summer. My headaches are no better but they are no worse.I got a substitute Dr. this last time and finally they sent me to a neurologist. All tests came out fine. I went in today to see what was next. The Dr. sat there, looked at the results of the tests and said, "It looks like you get migranes due to weather changes". I have never came so close to slapping a Dr. upside the head and saying NO DUH  I have told this to every Dr. I ever had. I do get a classic miagrain when that big red L or Ls get in and around Iowa. I usually end up on the couch wrapped up in a blanket and wishing I could saw my head off. It's these that go on for weeks I could never figure out. I have found music helps me a lot. I love New Age and get fully involved. I never could figure out how I would dance and why the more it hurt the more upbeat I liked the music. That is until today. I read almost all of your website and, it sure looks like I have the cronic clusters. I would appreciated it if you on this board think I have something else to let me know, so I can keep looking. If you think I'm right, it looks like I have found a home. Thanks
Julie
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t_h_b
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primary chronic since 1999
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Re: Happy to have found this site
« Reply #1 on: Jan 12th, 2004, 6:25pm » |
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Try the "cluster quiz" and "cluster traits" links to the left. A lot of people with clusters go through many years and many doctors before getting proper diagnosis and treatment.
How long do your headaches last? With clusters, you can have "shadows" or mild headaches that can be continuous but if that pain like a burning hot ice pick stabbing you repeatedly in the eye socket lasts for weeks without remission, it is probably not clusters.
Good luck with figuring out what you have, and if you do have clusters, you've come to the right place for information.
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No, it's not a headache--it's a Stage Ten Primary Chronic Periodic Idiopathic Trigeminovascular Cephalalgic Crisis.
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amen
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I love YaBB 1G - SP1!
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Re: Happy to have found this site
« Reply #2 on: Jan 12th, 2004, 6:29pm » |
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Welcome.  Sorry you have to be here though.  You will find a lot of good information here. Most of these people know what they are talking about. I will not give you any advice, because I am not that educated myself yet. Just sit back though, and the information will come to you from those who know firsthand!
Just keep in mind that Jonny...  well his bark is worse than his bite!
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jonny
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Re: Happy to have found this site
« Reply #3 on: Jan 12th, 2004, 6:31pm » |
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on Jan 12th, 2004, 6:29pm, amen wrote:| Just keep in mind that Jonny... well his bark is worse than his bite! |
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I heard that
...................jonny
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slimstitcher
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Re: Happy to have found this site
« Reply #4 on: Jan 12th, 2004, 6:31pm » |
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Yes, I did the quiz and looked at the traits. I found more then 75% was me. And the quiz was very much me. My mild heaches go for 3 weeks at a time, don't get the ice pick ones for very long and they are in the temples.
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Little Deb
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Re: Happy to have found this site
« Reply #5 on: Jan 12th, 2004, 6:35pm » |
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Welcome to Clusterville. Home of the clusterheads with hearts of gold.
Little Deb
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Adopt a shelter pet!
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Charlie
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Re: Happy to have found this site
« Reply #6 on: Jan 12th, 2004, 7:21pm » |
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Welcome aboard. It sounds like clusters to me. Clusters are the only headache I know that will wake you out of a sound sleep or are so bad that you cannot sit still.
Find another MD and arm yourself with some things taken from here. The following link is very helpful to make others understand that CH has nothing to do with what others think of as a "headache." The second is a technique that worked for me:
http://www.ouch-uk.org/ch/note_colleagues.cfm
http://www.netsync.net/users/charlies/
Good luck and let us know how you're doing.
Charlie
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There is nothing more satisfying than being shot at without result---Winston Churchill
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Callico
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Re: Happy to have found this site
« Reply #7 on: Jan 12th, 2004, 8:25pm » |
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Welcome aboard. You will not find another group of people who are more giving or more caring about you than this group. To bad you didn't find us a week ago! We just had about 25 or 30 of us together in Davenport last weekend. (They are still trying to put the hotel back together) What an awesome bunch!
Check out the oxygen link to your left, and take the info with you to see your Dr. the next time. O2 really helps a lot of us. Read all you can and feel free to ask questions. Yoiu will find someone on the board almost all of the time, and yoiu can usually get at least a semi-intelligent answer . You have joined one crazy, mostly happy family.
Jerry
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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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5-string
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New Board Old Timer
Nothing is accomplished without passion
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Re: Happy to have found this site
« Reply #8 on: Jan 12th, 2004, 9:49pm » |
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Hi Julie,
Welcome to the sight.
Cluster headaches are a big mystery to most of the world.When I first found this sight all I knew was how they felt.They suck.
Read as much as you can stand to. I've learned so much here.The value of this place is unmeasurable...Take it easy..
...Mark..
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BlueMeanie
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Re: Happy to have found this site
« Reply #9 on: Jan 13th, 2004, 3:26am » |
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Slimsticher,
Hi Julie. Do your headaches wake you up in the middle of sleep usually around 1-3 A.M. It's a pretty common thing for us Clusterheads. Except for Shadows, usually CH's come & go within 2hr tops. Have you had a CAT scan MRI etc. ? Have you tried O2 ?
Hope you don't have Clusters. If you do welcome to Clusterville. Sending PF vibes your way.
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slimstitcher
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Re: Happy to have found this site
« Reply #10 on: Jan 13th, 2004, 12:38pm » |
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Blue Meanie:
I am happy to say that I have never been woke up with these. Quite often I wake up in the morning with them and I go to bed with them. They do come and go during the day. I just had a MRI and every thing was good. I guess the one thing that stands out for me is the extreme pressure around the eyes and temples. There are times I could saw my head off with a butter knife and not feel the sawing at all.
Julie
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ClusterChuck
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The BEAST rises again, and again, and again, and .
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Re: Happy to have found this site
« Reply #11 on: Jan 13th, 2004, 2:46pm » |
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I have to disagree with the cluster headache diagnosis. But I am NOT a doctor!
Cluster headaches are almost always on ONLY one side. Not both temples and both eyes. If it was a true cluster headache, you would NOT be able to go to sleep with it. Clusters don't last for weeks. Clusters are for 30 minutes to a couple of hours. Clusters go from no pain to MAX pain in just a few minutes, and they go away the same rapid pace.
I am not saying you are not in extreme pain. But you need to find out what it is you have. Treatment is different for clusters than migraines or other types of headaches.
Chuck
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"No man can be happy without a friend, nor be sure of his friend till he is unhappy."
Thomas Fuller
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Paigelle
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Re: Happy to have found this site
« Reply #12 on: Jan 13th, 2004, 2:52pm » |
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Welcome to this strange family. Hope you don't have CH and like Chuck I am not sure if I agree with the dx. But I am not a Dr either and CH is a little different in all of us. Hope you feel better soon!
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Lissa
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Re: Happy to have found this site
« Reply #13 on: Jan 13th, 2004, 2:56pm » |
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on Jan 13th, 2004, 2:46pm, ClusterChuck wrote:| Cluster headaches are almost always on ONLY one side. Not both temples and both eyes. If it was a true cluster headache, you would NOT be able to go to sleep with it. |
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I agree with Chuckypoo.
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Episodic cluster survivor since 1995 at age 16.
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ZAIRA
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Re: Happy to have found this site
« Reply #14 on: Jan 13th, 2004, 2:57pm » |
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Welcome home. Happy if you found us. It will help you to give you courage against a powerful beast that enjoyes with our heads, but soon or later we will beat it... ! PFDAN..... Zaira
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Love yourself, Love others, Love often, Forever!
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