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Title: Are your CH public knowledge? Post by dellp on May 29th, 2003, 5:12am Just curious; until recently, i.e. finding this site, I would never tell anyone what I was going thru with these headaches. It was my dark little secret and the fewer that knew the better. Since finding you guys and this wonderful resource, I have wanted some of the people in my life to better understand why I do some of the things I do (little to no alcohol, glazed over eyes and fuzzy brain in the a.m., etc.) Am I just getting older or bolder or just don't care about what they think or what? ??? How do you feel about 'complete disclosure'? |
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Title: Re: Are your CH public knowledge? Post by Karla on May 29th, 2003, 6:00am I have always been very open and honest about my condition. All my friends know as much about ch as I do. Well ok, almost as much as I do within reason. They also know I get my support from ch.com and ouch. This way I get wonderful support from my local friends and family. I don't have to hide alone in fear or make execuses. |
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Title: Re: Are your CH public knowledge? Post by Tim_w on May 29th, 2003, 6:47am Dellp I tell anyone who wants to know what CH is to come to Clusterheadache.com and read some of the stories says it all Tim_w |
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Title: Re: Are your CH public knowledge? Post by RevDeFord on May 29th, 2003, 7:11am People know I have migraines, and they know I have CH. The problem is, in their mind, they can't seem to separate them. They are all "migraines" to them, despite me telling them that I would rather have a migraine any day then a CH. Foruntately, I have been headache free now for a few weeks. It has been so nice. I have needed the release. It definately improves my outlook. |
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Title: Re: Are your CH public knowledge? Post by ave on May 29th, 2003, 7:14am From the beginning I have never been shy about my attacks. I took my O2 into an organisation's meeting where I was on the board, had an attack, sucked the bottle for 10 mins. with everybody there. When I turned back to the minutes and the paperwork I got a great, respectful - "you looked positively GREEN! So that's what an attack looks like!" Also I publish about it in a fun amateur publication I am part of and tell a many people as I can. The pain is not my doing after all, so there's nothing to be ashamed of! |
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Title: Re: Are your CH public knowledge? Post by dellp on May 29th, 2003, 8:04am I have to admit I am pretty surprised :o; figured things would be split 50/50. Survey says....I'm the odd one here (Knew that) so far. It is easy to refer to this site where it used to be so difficult to get people to understand. Thanks for the input. Still looking for more. |
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Title: Re: Are your CH public knowledge? Post by Jackie on May 29th, 2003, 8:30am We've always wanted people (family, friends, associates, co-workers) to know about Blake's condition. We've also tried to answer all their questions and at times there have been many. We figure the more people that know the better.... just our small attempt at educating the general public. Having people know a bit more about CH has been helpful...especially at work when the co-workers pick up the slack while he's under attack. Jacks 8) |
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Title: Re: Are your CH public knowledge? Post by oringkid on May 29th, 2003, 9:15am I'm with Ave on this. What the hell is there to hide or be ashamed of?? It's not like it's VD or something. I used to get hit at work. I would sit rocking and hitting myself in the head with my stapler, tears running down one side of my face. I told the people around me about it. If others asked while I was getting hit, those people would tell them... They might not have understood but they could see. I've had them in meetings, I would be asked "are you alright?" (always the stupidest thing to say to someone who is obviously in pain, but I tend to do it too LOL) I'd get out " Yes, I'll be ok in a while, it's a clusterheadache" nuff said. Maybe I was lucky, at work, they accepted them. Some wanted to know more...I explained to them after the pain began to subside. I don't hide em... at all. But, I'm not as good as Ave, in that I don't think to get the word out about them when I'm not in cycle unless someone brings up the subject of headaches. Sherry |
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Title: Re: Are your CH public knowledge? Post by catlind on May 29th, 2003, 9:58am I guess I'm one of the odd ones out here hehe. I tend to keep it quiet. My immediate family knows about it, my hubby and kids even understand it. But no other family member or friends really understand. I'm tired of hearing from people that they think I just can't handle a simple headache and that I need to learn to function and get on with life. After hearing that so much I just stopped telling people what was going on. I'm not ashamed of it, I just have lost faith in the human spirit and their ability to understand or even want to understand another persons pain. Cat |
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Title: Re: Are your CH public knowledge? Post by Joanie on May 29th, 2003, 10:34am I've always let family, friends and co-workers know about my condition, especially when in cycle. It's something I have no control over and I'm darned if I'm going to feel ashamed about it. I have to admit though, that I didn't tell co-workers right away and unfortunatley scared everyone silly when I had an attack. Now, when I work with someone new, I'll let them know so they don't call 911......... Great question, Dell..... Joanie |
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Title: Re: Are your CH public knowledge? Post by Kenzie60 on May 29th, 2003, 10:39am I only tell the people who need to know, my employer, my family and some of my friends, all the others don't understand and I am tired of trying to explain it. Espically when they say, "Oh yeah, I had a migraine once.". I just want to hit them when they say that. Roseanne |
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Title: Re: Are your CH public knowledge? Post by Brian_Y on May 29th, 2003, 11:29am I tell folks when it's appropriate, I guess. Certainly, when I am at a cocktail party and someone comes up to me and says "So, what do you do?", I do not say: "Well, I'm a son-of-a-bitch Internal Audit manager and I have cluster headaches". I hate people like that. Makes you sound like when you were young and asked grandpa how he was doing and you got the run down on his knees, his peeing habits, his hip, etc. I've told my employers but that's only because I had to go to the doctor during an episode many days in a, well, cluster. Turns out, my boss' brother gets 'em too. So, she understood. And Roseanne's right: Do not try to explain the pain. People do not comprehend it. If I tell them it's like sawing a limb off w/o anesthetic, they get grossed out or it's just too abstract. Bottom line: What have you got to hide? buh-bye |
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Title: Re: Are your CH public knowledge? Post by Marc on May 29th, 2003, 5:12pm With permission, I "borrowed" and slightly modified a one page document from Simon Bowers (OUCH UK) that does a good job of describing CH's. It is aimed at friends and co-workers who are likely to witness an attack. If anyone wants a copy, I've got it on my web site: http://morrobayphotos.com/Clusters.pdf - pdf format http://morrobayphotos.com/clusters.zip - zipped MSWord doc Marc |
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Title: Re: Are your CH public knowledge? Post by Bob P on May 29th, 2003, 5:30pm Yep. Here's a link to my TV appearance proclaiming my clusters: http://pahlow.net/ch/movies.htm Last cluster I also sent a bulk e-mail to everyone in my office explaining what I had and what to do when they saw my office door closed (stay the fuck away). |
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Title: Re: Are your CH public knowledge? Post by jonny on May 29th, 2003, 6:12pm on 05/29/03 at 17:30:57, Bob P wrote:
That beats just hanging a sign on your door that says "STAY THE FUCK AWAY" LOL ;D ...........................jonny |
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Title: Re: Are your CH public knowledge? Post by oringkid on May 29th, 2003, 6:49pm You know, truthfully, I have only had one person ever, when I said I get cluster headaches, say "I've had one of those" And when I said, "nooooo, you don't EVER get just one, you must have had a migraine. Clusters are WAY worse. They are actually called Suicide headaches" they were like, "wow!" Maybe I just describe them well. Sometimes I have told people (especially women, but works well with men too) that a cluster is like giving birth...through your eye! I truly never had anyone "pooh, pooh" my headaches. And I don't scream or run around or roll on the floor. But they can see from the way I either hit my head (not hard enough to cause more damage, quit that a long time ago) with things (like an office stapler) or pull on my hair or dig my nails into different parts of my head, and the way my eye turns red and tears then closes down and the way I breathe and groan and whimper, that I am in extreme pain. I sometimes wonder if the exaggerated movements that CH actually causes and that I try very hard to keep under control, are part of the reason people don't believe it. If the people that I worked with had seen me on my hands and knees, head down, rocking back and forth, or slamming my head up against a corner of a wall, or thrashing my head back and forth as hard and fast as I can in bed till the pain let up... they might have thought I was faking it or overexaggerating... But I think due to my doing my best to control myself, they see the pain more clearly. It shows more. I don't know. I know they don't understand how bad it is, but I have never had anyone basically demean it. They might not understand but they could see it was no ordinary headache OR migraine. My mother once asked "would aspirin or ibuprofen help?" and the fact that she asked and did not say "well take an advil!" told me that she could see that this was not a normal headache. Maybe it is just that everyone that knows me, knows that I am not one to over react or exaggerate pain. (no offense meant here at all!!! I have always been one to "suck it up" (no comments from the peanut gallery if you please!) when it comes to pain. I was a ballet dancer for 14 years and would come off stage with blood soaked through my point shoes. I might have tears in my eyes but always went right back out there. I once was practicing a lift - run and jump- guy catches you- and I jumped too far, we went over and I slammed my face on the floor, my teeth going almost through my lower lip. I got back up and was ready to do it again. I had my daughter with no anesthetic at all. They gave me a local after I started to tear.) So, I guess, because I am able to subdue my self somewhat when a ch hits, they can see the pain as opposed to the big exaggerated movements that this pain pushes us to make. I don't know if any of this makes sense to you guys at all. But , there it is. Sherry |
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Title: Re: Are your CH public knowledge? Post by Mark C on May 29th, 2003, 7:07pm |
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Title: Re: Are your CH public knowledge? Post by dellp on May 29th, 2003, 8:09pm WOW ! I mean really W-O-W !!! You all are really out there - and I mean that in the best way possible. It was always just so easy for me to hide. 90% of my hits were at night and during a cycle I just wouldn't go out much knowing what was coming. The couple of cycles that were day time, being a solo practicing chiropractor, I could have the receptionist 'deflect' my patients until I could see them while I went and hid in the basement. Another time, daytime series, I was alone on a camping trip, just me and my O2 and I could pull off the road and suck it up for all I was worth while entertaining the birds and squirrels with my headbanging. I never heard my father talk about his and don't remember any evidence of daytime attacks. (Since my second or third year with ch we have talked and seem eerily alike.) He was the all-american macho 'I can take it' kinda guy and I guess he taught me well. There was rarely a need to tell anyone and that suited me just fine. But I gotta tell you this, being able to share this is really freeing in a lot of ways. Now that there is more than my words to describe it, a third party authority (and tenth, hundredth, thousandth and moreths ;D,) I almost have a real need to spread the word. Ya know, we ought to all get together and have a convention or something! Oops, guess I'm a little late on that one and unfortunately I will have to miss this one. But I am on board and rowin' my ass off. And you can count on me for the next one. Thank you one and all. You are the greatest. Dell |
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Title: Re: Are your CH public knowledge? Post by Mastifflvr28 on May 29th, 2003, 11:23pm 4 years ago, first day of my new job my cycle was going out with a BANG...every 2 hours all nite long. Well...I slept through the alarm clock so I was late to work, so I had to tell the hospital manager (Vet Clinic) about my ailment and she was very understanding. On my yearly reviews she said that when I'm in cycle I look tired, but it doesn't seem to affect my job performance (whew). Now she says I can't go to the convention because my cycle is LATE and I'm not in HORRENDOUS pain right now!! :) She inquires about once a week if I've gone into cycle yet. They don't UNDERSTAND at work, but they understand. My mom, on the other hand, STILL asks me if I should do this or that to cure myself, LOL. She has a hard time accepting that there is no cure :) BUT she did help me start my first farm. Moms are great :) Mast |
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Title: Re: Are your CH public knowledge? Post by Callico_Kid on May 29th, 2003, 11:44pm Great question Dell. I don't advertize them and try to stay out of the public eye when I know I am due to be hit. Most of mine are pretty regular, so I try to schedule my activities accordingly. The guys at work all know what I suffer with and have been good to work with me as far as me letting down my end on the load, and my boss tries to schedule my work in such a way that I work independently and on my own schedule as much as possible. 'Course it helps that he saw me get hit with an instant ten from paint fumes. Also at church where I am one of the youth sponsor and in charge of the Jr High dept. my Pastor asked prayer for me and explained to the congregation what CH is. I had shared Simon's letter with him and he then went and did some research on his own. He even explained that they went far beyond migraines and were called suicide headaches. My suggestion is to not wear it on your sleeve, but still explain what is going on to those you will be in contact with during your attacks, or anyone who will be effected by them. jc |
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Title: Re: Are your CH public knowledge? Post by KingOfPain on Jun 1st, 2003, 2:04am I tell everyone I know & meet about CH. My thought is that if by me telling people about CH & that helps just one person (they may know) get properly diagnosed, I feel it is worth bugging someone with my story. Some folks out there suffer because they don't know of oxygen for relief, or imitrex, or whatever. I also want the people around me to be informed in case I need help or don't want to be treated as someone with "just a headache". The more people informed of CH, the better off we all will be. KingOfPain |
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Title: Re: Are your CH public knowledge? Post by williamsmh on Jun 1st, 2003, 6:37am I know an episodic sufferer who hides his. He had most of his at night and then would take vacation off & on when he was at peak. I can't hide mine and never tried. I'm chronic and usually have about 3 a day when not medicated or when the meds don't work (much of the time). I have many of mine during the day. I had to tell people so they would understand why I had to cancel appointments with them and why I'm shooting up with imitrex. I started with migraine at 3, so chronic headache has been a part of my life since I can remember. So... it's never been a big deal to me to share. It's not the first topic that comes up, but if applicable I have no problem explaining cluster. Mark |
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Title: Re: Are your CH public knowledge? Post by kissmyglass on Jun 1st, 2003, 7:55am I tell anyone who will listen...Figure the more ears that hear "Cluster Headaches" the better..... Kev |
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Title: Re: Are your CH public knowledge? Post by Wendy1 on Jun 2nd, 2003, 9:39pm Had to reply to this one. I feel the same as most of you. I don't even bother trying to explain my 'headaches'. I've always thought that our 'headaches' should have a different name, because my head does more than just ACHE. ppl always try to make you feel better by saying the usual, "yeah I have migraines too". Or, "yeah, my sister gets those" ~ doubtful. Those words are very frustrating so I'd rather just keep it to myself. My close friends and family know what I go through (somewhat). My feeling is, I don't care WHO YOU ARE (neuro, etc.) unless you've pain of a cluster, you CANNOT fully appreciate the pain or even begin to understand it. Clusterheads are very special, brave ppl. We all deserve GOLD medals! |
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Title: Re: Are your CH public knowledge? Post by Roxy on Jun 2nd, 2003, 11:28pm Family and the close friends who are around me a lot know about the clusters. I have given up trying to explain to others about them....I do try, at times, but the frustration level just rose so high....I figured I would end up hurting someone. Last Friday, at a business dinner for my husband, I was sitting with 10 people at our table. One of the men mentioned that I had missed a few events this last week, and that Greg had told everyone that my head was acting up. The women immediately started asking questions. I explained about clusters, and of the 10 people at the table, 6 told me that they have them too. I very nicely tried to explain, again, the difference in types of headaches. I think after that explaination, one of the remaining holdouts at the table decided that he had them too. I fucking gave up after that. |
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Title: Re: Are your CH public knowledge? Post by aprilbee on Jun 3rd, 2003, 11:09am I am totally on board with the last two replies. It makes me crazy when I try to explain what CH is and I get the ever-so-popular, Oh I have Migraines too all you have to do is take an advil and drink a coke (how nice that must be, and inexpensive ::)) I do try to get the message out there about these headaches, my daughter who is only 9 years old has been diagnosed with migraines but her symptoms and timing have me wondering about CH, keeping an eye on that one. I hate to think of her having to go through explaining, and suffering, so I figure the more people I explain this to, maybe by the time she has to work and go to college, there will be more understanding in the world. We are all such strong and brave people, PFDAN to all of you, and strenght to the people who have to put up with the useless feeling they get when they can't help us. |
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Title: Re: Are your CH public knowledge? Post by echo on Jun 3rd, 2003, 12:00pm I always tell my immediate superiors what I can come down with, anticipated arrival, and what I need them to do to help me through it. I'm forward with those who need to know, and open with those that ask. Oddly, there is one woman in the office who can look at me and say "Oh shit - you've got one coming don't you?", or "Why don't you disappear - I'll cover for you!' |
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Title: Re: Are your CH public knowledge? Post by dellp on Jun 3rd, 2003, 12:43pm Thanks for the continued replies. For those having little results explaining this to people, I tell them it is the only headache known to man to have a suicide rate associated with it and "for me, it's like having a red hot poker jammed into my right eye." At this point they usually take a step back and fall silent. Thanks for the support. Aprilbee, prayers and best wishes for you and your daughter, I can't imagine what it would be like for a child to have to deal with this. Wishing PFDAN to all. Dell |
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Title: Re: Are your CH public knowledge? Post by aprilbee on Jun 3rd, 2003, 12:52pm Dell, Thank you for the prayers and wishes, it really helps! :) |
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Title: Re: Are your CH public knowledge? Post by jonny on Jun 4th, 2003, 4:35pm on 05/29/03 at 23:44:17, Callico_Kid wrote:
Thats pretty tough for me to do, CalKid http://www.pahlow.net/ch/ch_images/jonny4.JPG I must answer 6-8 questions a week about CH even more when I wear one of my 14 OUCH shirts along with my CLUSTERHEADACHES.COM bumpersticker on the back window of my truck. Im a fucking CH billboard and I WILL answer anyones questions if it means it will get the word out. This only applies to the people that have the balls to ask me ;D ...................................jonny |
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Title: Re: Are your CH public knowledge? Post by Bob_D on Jun 4th, 2003, 6:18pm Yes, I am open about my clusters. However, my episodes usually occur when at home so my family is usually the only ones that witness the BEAST in all its glory ! The few times I have had an attack outside the house, I quickly excuse myself, find someone to drive me home, and do my best from dancing and banging until I am alone. Most people just consider them a type of migraine. Partly it's my fault, because that's how I tend to describe them, i.e. its a form of migraine. It is quick, easy, and I never felt they would believe me when I tried to describe what I go through. Then I discovered this site. After taking a few days to read it for myself, I wrote a quick email to all the people in my address book, giving them the link to this site. The response has been incredible. I urge you to do the same. Their reactions ranged from being totally blown away to the most beautiful letters of support and love. |
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Title: Re: Are your CH public knowledge? Post by jminmilwaukee on Jun 5th, 2003, 7:19am Holy Shit Jonny!!!!! I am surprised the Beast has enough balls to attack you! Just goes to show you how fearless that son of a biatch is! Seriously, more power to ya man. jmin |
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Title: Re: Are your CH public knowledge? Post by kim on Jun 5th, 2003, 7:42pm Jonny = Fearless. Yes. That's how I think of muleman :) (That's a compliment butt-head)......... ;D Uhhh, anyhow, b4 I found this place last year, I had to explain my behavior and condition lots of times. I don't think one person ever really "got it" except for my family. I would avoid talking about it because people just looked at me and I could tell they just did not get it..........you know -- the look -- like "wow".........and meanwhile you know they are thinkin "man she is crackers" ;D Memorial Day Weekend I got to talking to someone about it and she was intrigued. Musta been the beer ;D |
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