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Topic: My first was... (Read 473 times) |
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Mr.YL
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My first was...
« on: Mar 11th, 2004, 11:43am » |
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Most of us remember our first attack, how can we forget it...
I was on a test drive with James and Billy Hills sister, this was many many moons ago, over 200 that is.
The piercing hit the right eye and such an ODD feeling as such that I had never experienced. By todays terminoligy it was considered a mild kip 5.
After going around the first curve and on the straight away it hit...I was in training behind the wheel, James said pull over and hit the pit stop....I could not explain it at that time what was going on with me because it was unlike anything imagineable...4 years later my family physician diagnosed me with them...At this time their was very little known about ch.
Alot of progress has been made in the study of ch since then. With people such as those that post here we know now that were not alone.
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Question...I know that for some of us their is a relation to nitrates in food( such as smoked meats and Deli meat)...Does anyone have any information on the possible relation to the nitrates we find in our drinking water and ch? Are these the same nitrates we find in certain foods? Any help would be appreciated.
Mr.YL
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jonny
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on Mar 11th, 2004, 11:43am, Mr.YL wrote:| Most of us remember our first attack, how can we forget it. |
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First attack was about 30 years ago, dont really remember the day it happen.
How can you forget?...When your 12 and dont know WTF is going on you dont want to remember 30 years later.
Someone clue the new dude in!!
............................jonny
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Mr.YL
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Re: My first was...
« Reply #2 on: Mar 11th, 2004, 9:35pm » |
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With a little luck maybe Jonny;; that someone will respond and write to clue me in. By the way Jonny... from what I've read I am sorry to hear, very sorry... that you are chronic . At 12 yrs old with your first, man I feel for ya...With all the support here I see it makes it a little better knowing that people care...Mr.YL
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CPM
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Re: My first was...
« Reply #3 on: Mar 11th, 2004, 9:56pm » |
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I'd like to hear of someone's "last". From them, that is. Isn't it possible that it may disappear, just as it first appeared?
Pete
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cootie
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Re: My first was...
« Reply #4 on: Mar 11th, 2004, 10:04pm » |
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I can't exactly remember Brad's first and nor can he but we know it was soon after that guy dropped that hammer on his head off a garage roof.......no shit Pam
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FZfan
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Re: My first was...
« Reply #5 on: Mar 11th, 2004, 10:52pm » |
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on Mar 11th, 2004, 9:56pm, CPM wrote:I'd like to hear of someone's "last". From them, that is. Isn't it possible that it may disappear, just as it first appeared?
Pete |
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Well, you can't hear it directly from him because my father doesn't have a computer, but dad's headaches ended shortly after he turned 62. That was over 10 years ago. His started when he was 40 and he was chronic the whole time.
I apparently inherited the affliction, and mine started when I was 42, about 7 years ago. Luckily (?) I am episodic. I am hoping my pattern will be like his and end after 20 years, but who knows?
I do know I have newfound respect for the old man. I can't imagine being chronic for that long. I know many on this board have been chronic even longer. I honestly don't know how you do it. May you all be PF forever someday.
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BarbaraD
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Re: My first was...
« Reply #6 on: Mar 12th, 2004, 5:56am » |
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I'll vote for the PF.
My first was in the middle of the night and I woke up screaming. Two months later I was diagnosed (thought I had a brain tumor). I was episodic for years then went chronic (or a damn long episode).
There have been some who have stopped at a certain age (and later started back - just when they thought it was safe to come out). Some have just quit.
One thing we've found over the years - there ain't no rhyme or reason to these things and everyone reacts differently.
Been through the food stuff and on me it didn't make any difference (except BEER - that's a trigger so I just don't drink beer). The barometer seems to affect mine - I like it to remain steady, but live in Texas so ......
Hugs BD
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randal
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Re: My first was...
« Reply #7 on: Mar 12th, 2004, 8:39am » |
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I dont remember my first-over 25 years ago and I have terrible long term memory loss-But I do have a Question for Chronics. Did you start out episodic and turn chronic or just start out with CH every day. The reason I am asking is because I have been in cycle for 8 weeks now and for me that is longer than usual. I just keep thinking I am going to turn chronic because this cycle has gone on forever. Sorry I am just paranoid and depressed and want this to end now and it seems all I can come up with is negative things when it comes to my Clusters. Sorry for the rambling on but thats what this board is all about.
Still want to Shot out positive vibes on the Varapamil-Lithium Combo!!!!AWESOME Cocktail------
Randal
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deacon
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Re: My first was...
« Reply #8 on: Mar 12th, 2004, 9:09am » |
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Randal
I know how you feel. I have had episodic CA for 15 years. Then suddenly I started having them every day up to 12 or more a day. I am on 900 mg of Lithium a day and still get one every 2 or 3 days. I am also worried that I have turned chronic for this has been going on for three months.
Deacon
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aprilbee
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Re: My first was...
« Reply #9 on: Mar 12th, 2004, 9:21am » |
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on Mar 11th, 2004, 8:47pm, jonny wrote:
First attack was about 30 years ago, dont really remember the day it happen.
How can you forget?...When your 12 and dont know WTF is going on you dont want to remember 30 years later.
Someone clue the new dude in!!
............................jonny
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AMEN!!! I was 12 too! I just have vague memories of my mom looking at me like I was going to die and my brothers saying shut her up!
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Dave_Emond
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Re: My first was...
« Reply #10 on: Mar 14th, 2004, 3:38am » |
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Hard to believe, but I too can't remember the first attack, only the month and year. Took 3 years to diagnose as CH. I was episodic for 5 years and have now been chronic for 3 years. Have tried so many different supplements that I highly doubt that nitrates in food or water are a cause, possibly triggers for some, but not in my case that I can find. And I tried. I think there is something to memory loss with chronics. Long and short term. A month or two can go by and I think it only two weeks. I can plan to do something tomorrow, then 3 weeks later I'm asked why I didn't do it, felt like yesterday to me! Sucks.
For those who fear going chronic. I do remember meeting chronics in Las Vegas not long before I went chronic. The idea of being chronic scared me to death, and I couldn't imagine it. Now here I am. Wish I could say there was a definate way to know if one is going chronic or not, but I doubt there is. I think it took me about 8 months or so before I could bare to realize that I had gone chronic. If your attacks are lasting longer, don't give up yet. There are many who have gone into years of remission that first went through longer cycles before the CH just "went away".
How do chronics live? Fight with everything we have day by day or at times hour by hour ... or give in. Most are fighters and develop a sense of: beat me all you can now! But I'm going to beat you in the end! It's a constant battle. Personally, I like the Cool Hand Luke scenario. 'Ol Luke would get knocked on his butt hard, but stand back up. Over and over and over again. No one understood why he kept getting up, I think chronics do.
Do I think chronics suffer more than episodics? Not really. When episodic, I remember the dread and stress of knowing my cycle was coming, plus the fear each cycle that I'd go chronic. All that stress is very hard on episodics, that part I don't miss. I'd be lying if I didn't say I'd rather now be episodic, even one pain free day would be incredible. But, we get what we're dealt and learn to live with it episodic or chronic.
Best advice I can offer: Don't let worry and stress ruin your pain free days, take each of them and enjoy them as much as possible. If your cycle is lasting longer, focus on the hope that it may lead to remission. Harder to do than say, I know, but I think of the days I wasted stressing out about the future days instead of enjoying the pain free ones I had.
Dave
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jonny
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on Mar 12th, 2004, 9:09am, deacon wrote:I am on 900 mg of Lithium a day and still get one every 2 or 3 days. I am also worried that I have turned chronic for this has been going on for three months.
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Deacon,
Add some Verapamil to the Lithium, At least talk to your Doc about it....can you imagine weeks with no HA?
..............................jonny
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Linda_Howell
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Re: My first was...
« Reply #12 on: Mar 14th, 2004, 12:14pm » |
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Pete,
If you want to talk to someone about their "LAST", talk to Charlie. He's the only one here that I know of, who's been PF for 12 or 13 yrs. now.
Linda
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Charlie
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Re: My first was...
« Reply #13 on: Mar 14th, 2004, 10:50pm » |
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My first was in August, I think of 1969 while watching Johnny Carson. I thought I was a gonner. I think it was fairly short.....perhaps 10 minutes. They increased in frequency and duration..about 20 minutes plus and about 4 or 5 a day usually. For a time they were very predictable: October-November/ March-April. They never varied in intensity. All I know is that I wanted dark, cool, alone, and absolute silence.
In 1990 after 22 years and during a stressful time of my life, they seemed to become less of a factor in my life. I didn't realize this until the fall of 1991. Some time in April of 91 was may last attack. I was 45. I realized that I hadn't noticed the tapering at first. Anyway, since then there have been no real sign of the things. I suspect they began to taper so slightly that I didn't see it.
It will be 13 years pain free next month. I ain't complaining. I had no triggers nor can I point to any reason other than the iffy possibility of an age factor.
I wish the same for everyone but hopefully before they start losing so much gray matter as I.,
Good luck kids.
Charlie
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Mac
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Re: My first was...
« Reply #14 on: Mar 15th, 2004, 11:06am » |
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It hit me out of the blue in the early evening sometime in Aug. 2000. Of course I thought it was a viscious sinus infection and immediatley started doing sudafed and drixoral and the first doctors I saw put me on penicillin for a sinus infection I DID have. Of course the infection went away and the daily clusters remained. It was a year ago that I was finally officially diagnosed as a chronic clusterhead. Oddly enough a year before that an allergist suggested I might be suffering from something called "Clusterheadaches". Of course the first "doctor" I mentioned it to disregarded it. Anyways I celebrated  my one year anniversary of being diagnosed with a good ol' shot of 'trex up the nose. Oh joy!
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fubar
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Re: My first was...
« Reply #15 on: Mar 15th, 2004, 12:09pm » |
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My first hit me on a beautiful summer day. I was having a great day skiing behing my new 18 1/2 foot Sea Ray. There wasn't a cloud in the sky, and I was really on top of my game pulling some seriously sick moves on the water. All of a sudden and without warning, I wasn't making any moves at all. I was frozen with terror, still being pulled by the boat. My head felt as if it suddenly had a white hot fire burning inside, and the effect on me was complete shock and immobilization. I tried to think of what do do, but could not form any lucid thoughts. I let go of the rope, and ended up face down in the water, unable to move to right myself. I would have drowned if my buddies had not whipped around and pulled me from the water.
I spent the next hour and a half in total pain, but we were hours away from any kind of help, so I crawled into the bow of my friend's big boat and rocked and cried and tried to deal with it. Then, as suddenly as it started, it stopped and I was 100% better. I popped out of the boat to join my friends who with very perplexed as to how I could recover from something so dramatic, so quickly.
I wasn't diagnosed with CH for years after that. It was episodic for many years, then I went chronic. I can't say which is worse. With episodic, there is the initial shock and horror every time a cycle starts. This never diminishes no matter how many times I went through it. With chronic, there is the constant fear and anxiety (on top of the pain) not to mention the ruined life.
-Fu
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| « Last Edit: Mar 15th, 2004, 12:59pm by fubar » |
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forgetfulnot
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Quote:Question...I know that for some of us their is a relation to nitrates in food( such as smoked meats and Deli meat)...Does anyone have any information on the possible relation to the nitrates we find in our drinking water and ch? Are these the same nitrates we find in certain foods? Any help would be appreciated.
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Here is a link to an E.P.A. fact sheet on nitrates and drinking water, the allowable ppm is so low I doub't there is any effect on clusters.
http://www.epa.gov/safewater/contaminants/dw_contamfs/nitrates.html
Lee
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ZAIRA
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Re: My first was...
« Reply #17 on: Mar 15th, 2004, 3:36pm » |
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My first attack was during my holiday summer in 93.... I thought to die  but meds told me it wa "just" CH!
Ciao...... Zaira 
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ClusterChuck
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Re: My first was...
« Reply #18 on: Mar 15th, 2004, 7:02pm » |
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How could I forget? Even though it was around 26 years ago, I remember it well. It was about 11:30 at night, and my wife and I were in bed, um, performing our "marital duties", shall I say. As soon as I reached that "ultimate" moment, SLAM! (Was it good for you, dear?) Our dear curse choose this particular time to make his presence known.
It hit so hard, I passed out and was in a comatose state. My wife, obviously thought I was a gonner. She called 911 for an ambulance, and they transfered me to the local hospital. The local emergency room took one look at me, and called for the lifeflight to take me to the big teaching hospital.
I spent about three weeks there, where it was decided that I was NOT in real pain, but that I was "mentally deranged" (not that I have ever denied that!). This started six years of being treated as a mental defect, because no one could be in that much pain, and have all the tests come back normal. It was "all in my head" ...
BTW, all the different shrinks had a great time of delving into the significance of what I was doing when the first one hit! "Why don't you like sex?" "Is it just with your wife that you have problems, or is it anytime you have sex?" (DUH!!! I am a faithful married man. Where else was I gonna have sex? Other than Madam thumb and her four daughters?) "How badly were you sexually abused as a child?" I spent six wonderfull years of having every aspect of my sex life fully pulled out and analized. Is it any wonder that I am such a preeeevert now?
Chuck
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Sean_C
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I think I was hmmmmmmmmmmmm
I think I was.....................
Ahh shit, I mustuv been somewhere
Was quite some time ago....24 years give or take, and probably thought it was some bad weed or something LMMFAO
PFDAN to you
Sean
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