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Title: Want to experiance cluster headaches? Post by Lietuvos on Jan 29th, 2006, 12:19pm what you will need: 1 T-handled corkscrew 1 16 penny nail 1 freind first screw the corkscrew into your ear. grasp the handle with 4 fingers and put your thumb into your eye and squeeze as hard as you can while your freind hammers the nail into the back of your neck at the base of your skull. repeat this 4 or 5 times a day for two weeks. then take a week of before repeating.Do this before you tell a sufferer "I know how you feel" |
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Title: Re: Want to experiance cluster headaches? Post by Margi on Jan 29th, 2006, 5:45pm on 01/29/06 at 12:19:47, Lietuvos wrote:
try standing on this side of the fence and watching someone you love go through that...and you are totally powerless to prevent it and to stop it. I can think of very few veteran supporters would would EVER say 'i know how you feel'. But we do RESPECT how you feel and, if it were in our power, we would never let you feel that pain again. I know your pain is much worse than anything else experienced by man, but please don't belittle supporters' pain either, ok? |
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Title: Re: Want to experiance cluster headaches? Post by Lietuvos on Jan 29th, 2006, 8:10pm forgive me, i am not trying to belittle your pain. i wrote this after reading supporters complain of the burden of living with the sufferer, also for the people who have told me "I know how you feel", You don't and until you try this experiment....you never will. i would like a sufferer to try and find a better way to explain the pain or at least agree with my discription. I don't want supporters to feel bad, I just want them to understand the disability......yes disability (as you surely have seen it disable), I have lost my wife and countless jobs because of these fuckin' headaches, so next time you want to complain about canceling plans or they way he/she treats you during a headache,or even how hard it is to see someone suffer with them....grab a corkscrew and a nail and call a freind..... i.e. read "ok some honesty" or "i feel like a bad wife" |
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Title: Re: Want to experiance cluster headaches? Post by boo-t-full on Jan 30th, 2006, 8:27am Is this board not moderated? It's my understanding that this is intended to be a place that supporters can come and talk to (and yes, even complain to) eachother so that we can avoid expressing completely normal emotions to people in our lives who are already going through enough. I hope that the people who wrote the posts that you referred to were able to blow off enough steam in here to go back to their loved ones and show them as much love and empathy as they possibly could. I applaud their courage at owning up to emotions I'm sure that feel a lot of shame about, and assure them that they are, if anything, NORMAL! |
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Title: Re: Want to experiance cluster headaches? Post by deltadarlin on Jan 30th, 2006, 8:40am on 01/29/06 at 20:10:29, Lietuvos wrote:
How about some honesty from the other side. I'm a supporter and have been with my husband for a little over 28 years now, 24 of those years, dealing with ch, for varying periods of time. on 01/29/06 at 20:10:29, Lietuvos wrote:
I'm truly sorry that you lost your wife (countless jobs) because of cluster headaches. I *see* a lot if bitterness and anger in our post. BUT, that doesn't give you the right to belittle supporters and what they have to deal with either. If I could put myself in any ch sufferer's place for just a short period of time, just to experience what they go through, I would, but I can't, so all I can do is stand on the sidelines and provide what I can, be it support, or to just leave them alone. on 01/29/06 at 20:10:29, Lietuvos wrote:
That's human nature and it's something that most people do, not because they are stupid or insensitive, but because the don't *know* (the vast majority of people will NEVER understand and even with *education*, there's not a whole lot anyone can do about that). on 01/29/06 at 20:10:29, Lietuvos wrote:
I'm not sure where you read this. I actually had to go back and read several posts here to see if I found anyone complaining of their partner being a burden and I didn't find anything. Want honesty here? It can be a *burden* (burden defined-anything that is carried, load; heavy load), BUT that doesn't mean it isn't a burden that each and everyone of us pick up and carry willingly, along with all the other *burdens* that life throws at us. on 01/29/06 at 20:10:29, Lietuvos wrote:
Gee, screw me for being human, but I have feelings too, and some of those may be disappointment when plans are canceled, hurt when my partner lashed out at me, or aggravation at something that I have absolutely NO control over. Next time you feel the need to vent, feel free to do so, but remember, we may not be able to understand how you feel or what you are going through, but at the same time, you can't understand what *our* side goes through either. Life can be shit. Whether one chooses to wallow in it, or pick their ass up and go on is a choice. 'darlin (supporter to a ch'er and a daughter who has chronic medical problmes) |
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Title: Re: Want to experiance cluster headaches? Post by Grandma_Sweet_Boy on Jan 30th, 2006, 8:52am Darlin & Margi - both excellent posts to a person who is way out of line. I read the support boards regularly but generally refrain from posting as I believe this board should be left for the supporters. The supporters in our lives absolutely need a place where they can vent from time to time and thank God they have this place. As frustrated as we (the sufferers) get at having to change plans, I also know how selfish we can be at times when under attack and quite often we don't even stop to think about how often our condition affects the lives of those who care for us and love us. It's always sad to hear that a person has lost their partner but I'm not so convinced that it's solely due to CH. I figure there's an awfully good chance the relationship wasn't all that solid to start with. My two cents worth and with love and gratitude to all the supporters and especially my own. Carol |
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Title: Re: Want to experiance cluster headaches? Post by AussieBrian on Jan 30th, 2006, 9:02am And from another sufferer, I've sent Liet a PM asking that he reconsider his stance. It's quite unfair that anyone should try to tell a supporter what CH really is, so kindly accept that he's having a bad day and all will be well in the morning. Supporting our supporters, Brian down under. |
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Title: Re: Want to experiance cluster headaches? Post by Margi on Jan 30th, 2006, 10:38am Thanks, Brian, for the voice of reason here. :-* Boo-t-full, yes, DJ and I moderate this section of ch.com. That's why I posted. I will defend to the death a supporter's right to vent and this is the place to do it. I know sometimes I'm TOO sensitive, but I am always upset by perceived supporter bashing. That will never change. Delta Darlin - BIG hugs for you. Awesome post! Carol - you knows I loves ya. Thank you for your words. Lietuvos...I am SO sorry that you and your partner have parted ways. I know you're bitter and in pain of a different kind than cluster. I know a few sufferers who've gone down your path and have had their supporters leave and they, too, share your hurt. Not everyone is cut out for this lifestyle though...it's not an easy job being a clusterpeep (as you well know) - on EITHER side of the fence. And, for what it's worth? I get just as angry at people who call themselves supporters when, in reality, they're not supporting at all. In some cases, it comes closer to abuse. I'd jump on them, too. The threads you mention - well, yes, sometimes we supporters DO hit the wall and we thank DJ every day for giving us this place to vent our frustrations. It's just my job to keep this place safe. And, if you keep digging, you'll notice that these venting threads are really few and far between. For the most part, supporters just come here looking for survival tips from other's who've walked in their shoes. And, one last thing, Lietuvos...if you need a shoulder to help you get through the day - there are lots of wide and waterproof ones here available to you. We've got some awesome supporters here who I know wouldn't hesitate to help you, myself included. |
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Title: Re: Want to experiance cluster headaches? Post by maffumatt on Jan 30th, 2006, 11:47am I would rather experiance CH than watch my loved ones experiance it. Watching someone suffer through an attack has to be the most helpless feeling I have ever experianced, as another post on this board states, its another kind of pain........I think I'll stick with CH, and to the suffers out there that have become supporters too, my hats off to you. |
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Title: Re: Want to experiance cluster headaches? Post by E-Double on Jan 30th, 2006, 12:04pm I always say that the hardest thing to deal with regarding CH is knowing that the one's I love suffer. They may not feel the pain of the "headache" but they feel everyting else. I am sorry that you have had such bad experiences. The fact is that if it weren't clusters it may have been something else. If people are with you then they are with you. know what I mean ;) Stay strong and welcome to the family. Just realize that these supporters are our angels! Eric |
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Title: Re: Want to experiance cluster headaches? Post by Lietuvos on Jan 30th, 2006, 12:55pm like i said in my second post...i am not trying to belittle your pain. I'm simply trying to give insight to the pain we suffer. I am on your side of the fence since i love myself (that's why i haven't killed myself).I am not angry with the people that complain about living with a sufferer, i just don't believe they fully understand the extent of the suffering.Feel free to vent and complain all you want, but getting angery with us doesn't help us or you.We did not choose this curse, and we don't get headaches to inconveinance anyone. Believe me when i say if i had a cure you would have a cure. i simply put up this post to support the supporters. you cannot help until you understand.....and if you do understand, this post is not meant for you. My mother and father both broke into to tears of helplessness watching me suffer,so, like i said before, i am not trying to belittle your feelings,i am just trying to help you understand and maybe we can solve this problem together. Sufferers and supporters need an open line of communication, and we may feel angry with one another,but in order to solve this problem we both need a degree of understanding.I am truley sorry if i have offended anyone, that was not my intent. I am not a hermit that lives on a desert island, i too have family and friends that are affected by my suffering, so i can understand the supporters point of view. So get angry with me if you want, hell, even write nasty replies....your here to vent remember? |
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Title: Re: Want to experiance cluster headaches? Post by MJ on Jan 30th, 2006, 1:26pm on 01/29/06 at 20:10:29, Lietuvos wrote:
Some of us have been fortunate to have wonderfull support through these. Some of us have not. All of us have known at one time or another how you feel Lietuvos. Not for one minute would I wish another to know how it feels. Though I have tried to explain many times, I dont think I have ever been successful. If it werent for the support some of us receive, the willingness to adapt and attempts at understanding then the CH would be so much worse. It goes both ways and we must provide some comfort to those who do support as I think there pain and emotional support is every bit as important as our own pain. We must support the supporters if ever we want it to last. We all have a right to complain on both sides of CH. There are those who will never understand or even try and to them we simply say goodbye. Glad you got that off your chest Lietuvos. Its all about the attitude at times and allways about the knowledge. MJ |
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Title: Re: Want to experiance cluster headaches? Post by Margi on Jan 30th, 2006, 1:30pm on 01/30/06 at 12:55:37, Lietuvos wrote:
Hi Leit :) I get your point now - I misinterpreted your post to encompass all supporters everywhere. I, myself, have been with my husband for more than 20 years now, battling clusters together and there are countless others here who have the same length of time in - so obviously we DO understand. Like I said in my last post - some people just aren't cut out to be cluster supporters. They're the ones that leave. The ones that are cut out for it, well they're the ones you'll find here. So I guess your intial posts could be construed as preaching to the choir, maybe, but I do appreciate you trying to help anyway. Don't forget to introduce yourself over on the other part of the boards as well - you'll probably find GREAT comfort in talking to other sufferers. I know my husband was blown away to finally be able to talk to someone who had felt his pain. It honestly is like finding people from your home planet. ;) |
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Title: Re: Want to experiance cluster headaches? Post by MJ on Jan 30th, 2006, 1:40pm on 01/30/06 at 08:27:32, boo-t-full wrote:
Loking at this thread it appears quite well moderated. Nice insight Margi and good recovery Lietuvos. |
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Title: Re: Want to experiance cluster headaches? Post by seasonalboomer on Jan 30th, 2006, 1:58pm Okay, I'll throw my hat into this one. (Let me first say that I exempt from my comments those who are chronic, have tried everything, and have to live with this day-to-day, month after month, and can get no long term relief. I don't mean you in my statements) I'm an episodic sufferer, married for 14 years and also own a business (for 13 years). While I understand your frustration I've instead chosen to take responsibility for my "suffering". I'm not saying my wife doesn't sometimes see me and have to experience my cycles from a supporter standpoint, but I do EVERYTHING I can to try and make OUR life together work inspite of CH. I've accepted responsibility for people either understanding or not understanding my condition by educating my family and employees about what happens to me. This includes what they can expect and what is not part of CH. For example, they know that there may be times when I'm not totally engaged on a subject when in cycle. But they can also expect me to not be an "not a very nice person" to them when in cycle and if I am they can let me know. So, if someone thinks I should just take a few Excedrins and get over it, I've not done MY job well enough. I've also accepted responsibility for making sure that commitments are made or properly handled when in cycle. For instance, if there is a big event where drinking is the expected behavior, I can either be irresponsible and place myself in the middle a screaming CH hit, or I can choose not to drink. One choice places my supporter in the middle of a mess, the other has us not in a mess. And my choice leads to either outcome. After I came to CH.com I realized that I was not doing all that I could to treat my CH. I accepted responsibility for the fact that I knew about O2 and had procrastinated about getting some. My bad and as a result I could inflict far less pain on myself and have my supporter have to experience far less affect to our life, just by GETTING THE O2. I knew Imitrex was a good back up option for me, but I hadn't gotten any. My bad, I got it and it worked. Less pain, less stress. I tried the Kudzu, it worked, less pain, less stress. And not everyone has the kind of period I'm having right now where these tools seem to be working like a charm and making CH far less of the "event" it used to be. But, I ask those of you who struggle with supporter issues, are you doing all that you can. Is your supporter sometimes right? That you could be doing more? Yes, I'm a sufferer but we spend so much time here trying to proclaim our pain being worse than anyone else's that we sometimes lose sight of the fact that there is much we can all be doing. That while we may suffer from this affliction that we don't have to subjugate ourselves to being its victim. I spend a lot of time here on these boards learning, and finally putting in into action. Yet I choose not to define myself by this freakin' condition. Okay, there's my rant. Take what you want or call me a Judas, but realize we all have to own our own actions and sometimes, lack of actions. scott |
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Title: Re: Want to experiance cluster headaches? Post by Margi on Jan 30th, 2006, 3:24pm Wow, Scott - yours is one of the best posts I've ever seen here or in any of the cluster forums. What a wonderful attitude and stance to take. Thank you! Very well done. |
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Title: Re: Want to experiance cluster headaches? Post by kissmyglass on Jan 30th, 2006, 4:42pm on 01/30/06 at 13:30:30, Margi wrote:
I read his first post as a Drk Angel type description, nothing more nothing less. I am probably wrong though, as usual Kev |
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Title: Re: Want to experiance cluster headaches? Post by maffumatt on Jan 30th, 2006, 5:21pm on 01/30/06 at 13:58:39, seasonalboomer wrote:
well said Scott |
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Title: Re: Want to experiance cluster headaches? Post by deltadarlin on Jan 30th, 2006, 6:48pm Second matt on scott's post. Here here [smiley=thumb.gif] 'darlin |
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Title: Re: Want to experiance cluster headaches? Post by Jackie on Jan 31st, 2006, 8:32am Now that's a post, Scott!!! I admire you attitude and your style!!! :-* All I can say is.....supporters/co-sufferers do the best we can. We're all in this together....it takes a village. Jacks 8) |
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Title: Re: Want to experiance cluster headaches? Post by Cathi04 on Jan 31st, 2006, 11:17pm Liet- I have stayed out of this, watching as others so eloquently made their cases. I simply want to point one thing out to you. Yes, you have the agony that is CH....but have you ever watched someone you care for suffer such abject pain, while you stand, hoplessly by their sides, wringing your hands? My situation is different, as an indirect supporter, but I am here to tell you. I would GLADLY take a day, or a week or a month, in order to see my friends PF long enough to catch their breaths! Three things I have learned while I have been here....... 1- Live the life that occurs BETWEEN the hits.thats the REAL life, and it is GOOD! 2-Nobody wants to be on EITHER side of this fence, but, when people really care for each other anything is possible! 3-ALL the people here in Clusterville are here to help you as well.....and they will all tell you, the battle is much easier when you have a good outlook. I guess, finally, a word about the woman who is no longer your wife. Some people are made to be what you needed, others are not. She was not meant to be your helpmate, your supporter. I hope you find one, but till you do, you have a whole family here to hang onto! You are not defined by your CH, rather, you are defined by how you live with it. Wishing you PF days and nights, Cathi-with a big hug to offer you........ |
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Title: Re: Want to experiance cluster headaches? Post by MJ on Feb 1st, 2006, 12:08pm on 01/31/06 at 23:17:41, Cathi04 wrote:
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Title: Re: Want to experiance cluster headaches? Post by BMoneeTheMoneeMan on Feb 1st, 2006, 11:55pm A great woman sent me a link to the thread entitled : Another kind of pain. Reading this really moved me, and i read it over and over for a long time. I thought to myself that i wish i could never, ever, even for a second make my wonderful wife feel any of those types of pain. Physical pain is physical pain, but emotional pain effin hurts for ever. I'll choose sufferer over supporter any day of the week......supporters cant take a shot and feel better. Another kind of pain: http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=supporters;action=display;num=1063832550 ANY day of the week BMonee |
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Title: Re: Want to experiance cluster headaches? Post by minnie on Feb 3rd, 2006, 12:49pm my take on this we are here to share ways to support our sufferers and to let steam off.Thanks to DJ we have this little corner where both supporters and sufferers are welcome just like the main board.Those of us that come here try our darndest to be everything we can to our CHer thats why we are here.I have only felt the CH pain in my heart not my head.But I personally find it hard to believe that anyone who has suffered the pain of CH would seemingly want anyone to suffer the pain just so we can walk in your shoes.Do I want to experience the pain of CH hell no I don't want anyone to.I think I can supprt and be there for people without going through it personally.to me thats like saying the only way to support or take care of a cancer patient is to do everything you can to grow cancer cells.... If I am reading your post wrong sorry but I just do not understand coming to the supporters section and seemingly saying you haven't been there so don't vent....personally I say tough.... sorry if this offends anyone and for the record I have nothing but the up most respect for those in our CH family who are battling the beast.so many sufferers come to this board and support us supporters and to all I give my heart felt thanks.you do give a perspective we need to be the best supporters we can be.I guess I just needed to vent my disbiefe at this thread. Minnie ok flame away if ya need to ;) |
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Title: Re: Want to experiance cluster headaches? Post by Jackie on Feb 3rd, 2006, 1:31pm Well said, Minnie.... You said, "ok flame away if you need to"........ Well, I don't think that's gonna happen..... Love to you and the girls... Jacks 8) |
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Title: Re: Want to experiance cluster headaches? Post by Think on Feb 3rd, 2006, 1:56pm That's my first posting here - I too am the partner of a person who has been suffering from CH for almost two decades. It's been very tough at times, as you all know. I am feeling sorry for the person I live with, yet, by the same token, I feel resentment, because of the violent and uncontrollable anger outbursts due to sleep deprivation and the meds. It, occasionally, gets really scary to the point that I have to fear for my life. I can only imagine how CH-sufferers feel - yet, that horrible pain does not, imho, give them the right, to destroy everybody around them. Forgive my naivety, but, instead of blaming one another or giving in to what the neurologists tell you, why can't we all work together (how many CH-sufferers are there all over the world?) and force both the pharmaceutical companies and the medical society to have a closer look at, and invest more in CH-research? Think (and act)! |
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Title: Re: Want to experiance cluster headaches? Post by Margi on Feb 3rd, 2006, 2:11pm on 02/03/06 at 13:56:14, Think wrote:
No, it does not give them the right to destroy ANYBODY around them, Think!! If you're fearing for your life, you need to take positive action to ensure your own safety. Your partner needs to take responsibility for their actions and should NEVER cause you to feel fear, especially because of cluster headaches. That's just not right. :( Hugs to you, Think - please stay safe. |
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Title: Re: Want to experiance cluster headaches? Post by minnie on Feb 3rd, 2006, 2:14pm Think, I just want to let you know about a great organization called OUCH. It's the Organization for Understanding Cluster Headaches.It's is worldwde and Started by many sufferers right here on this board.They have many projects going to educate Sufferes,Doctors and pharmacutical companies.Please visit the site become a member and if you have can provide one of the many volunteer services needed that would be great.heres the link to the U.S. site ...... http://www.ouch-us.org/ and a link to their newsletter http://www.ouch-us.org/newsletters/newsletters.shtml Minnie P.S. OUCH membership free |
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Title: Think, Does your sufferer soend time here Post by Richr8 on Feb 3rd, 2006, 2:28pm ...and do you spend time interacting on the supporters board? It sounds like you both need a lot of help and support and it is all here for you, as are we. Wishing you find what you need and the both of you many pain free days and nights (PFDAN) Rich |
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Title: Re: Want to experiance cluster headaches? Post by thomas on Feb 7th, 2006, 1:56pm I will take suffering over the pain of watching a loved one go through this any day. I know both sides. ;) |
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Title: Re: Want to experiance cluster headaches? Post by Margi on Feb 7th, 2006, 3:24pm Yes, you do. Hugs to you, Thomas. You're a star - you and Gena both are. |
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Title: Re: Want to experiance cluster headaches? Post by thomas on Feb 7th, 2006, 5:42pm on 02/07/06 at 15:24:33, Margi wrote:
No, not me. I'm just in a supporting role. You're a star, dear. :-* |
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