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Title: First time poster with a tip Post by wlsio on Apr 22nd, 2003, 2:32am Hi all,I have just found this site,YIPPEE!!! I have been a ch sufferer for 10 years and tried all sorts of drugs to relieve the pain--nothing works really. One thing that helps the pain go away for me was to take a panadol(so my brain says i've taken a pain killer)and then i try to fully focus on something.As you know how can you focus on anything with all that pain in your brain?.Well i tried focusing on the pain itself and it worked.Hey it wasn't easy , and it took real focus but the pain stayed only in the background(it's hard to explain but it works a lot of the time)Focuf,focus,focus.I hope this works for some of my fellow sufferers |
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Title: Re: First time poster with a tip Post by suzy617 on Apr 22nd, 2003, 3:00am Hi Wlsio, Welcome to the board. Could you explain further what you mean about focusing on the pain? I'm not sure I really understand because when I get hit, thats all I can do is think about the pain. What exactly do you picture in your mind? Suzy |
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Title: Re: First time poster with a tip Post by wlsio on Apr 22nd, 2003, 3:14am Hi,suzy.you need to be in a dark quiet room and just concentrate on the pain,don't fight the pain just focus on it.Remember it's not easy,but if you can do it hopefully it will work.I find one minute intense pain next minute asleep.I hope you try it and it works for you.Let me know how you get on.I will visit this site every night .goodbye and good luck |
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Title: Re: First time poster with a tip Post by Charlie on Apr 22nd, 2003, 4:56am Welcome and your idea makes some sense. Mine is not the same thing but many would disagree. Mine is entirely physical but your post reminded me to post this. Give it a try. It worked about 80% of the time: Dr. Wright's Circulatory Technique This is not transcendental meditation, imagery, relaxation, or anything psychic. It's entirely physical and takes a lot of work and concentration. Give this method a good workout. It’s not a miracle, but it’s been helpful to many. When I was diagnosed, my neurologist said to treat this as a vascular problem. I was told to concentrate on “redirecting” blood circulation in order to retard flow to the head. This is done by trying to “send” blood into the arms and hands or other extremities. When properly done, your hands will become warm and redder with increased circulation. I also found it easier to concentrate on one hand. This relieves just slightly, the pressure on the affected vessel, which indirectly causes our pain. We all have this ability but it can be exhausting. I was often able shorten my attacks from about half an hour to no more than a few minutes. Sometimes, when awake, I could entirely abort the attack IF I KEPT AT IT. Often, I would suffer only minor discomfort instead of excruciating pain. Do not stop just because your hands are warm or redder. Keep this up until you are sure it's subsided. If you let up or lose concentration, it’s very hard to restart this process. It may take some time but when this works, the relief is almost immediate. I learned this from the doctor in a few minutes. He simply told me to try to keep blood away from the head. He thought it easiest to concentrate on the arms and hands but any place that works for you is fine. He said to think of it as "filling your hands" with redirected blood. It’s important to keep at it THROUGH the pain. This will be difficult, but it’s the only way this technique will work. Don’t let up until you are sure the attack has ended. This will not always work, but I think it will always have at least some effect on the severity and duration of the attacks. It can be useful between medications or while waiting for some other drug to take effect. All it takes is a little practice. It was fairly easy to learn and what I'm writing here is more than I got from the doctor, as I've drawn from my own experience. When awakened in horrible pain, it’s very hard to focus, but I think it’s always worth a try. This costs nothing but hard work, is harmless, non-invasive, and it gives us a fighting chance. I wish you the best of luck - Charlie Strand |
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Title: Re: First time poster with a tip Post by wlsio on Apr 22nd, 2003, 5:23am Thanks Charlie,i'll try to focus elsewhere,it's just that (i'm sure you'll know)the pain is so great that to fully focus(i guess meditate)on anything thats not the pain you're feeling must be pretty difficult.Even focusing on the pain is extremely hard.The only times this works for me is when i'm strong enough to block every thought,sound,light etc out of my head.My mind has to be totally focused on the pain only.I will definitely try your suggestion and thanks |
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Title: Re: First time poster with a tip Post by catlind on Apr 22nd, 2003, 7:43am Welcome aboard wlsio (Wayne?) What you say is something I've done myself. Never really thought much about it though. When I'm getting hit and it's really bad, I will literally examine the pain. Take a perspective of a scientist examining something external and not a part of me. I seperate the pain out as best I can and examine it. (lots of visualization work here, much the same line as charlie's technique) See the insides of your head, all the mechanics of what the pain is, the trigeminal nerve, the arteries, the hypothalamus etc. and try to SEE the pain to understand it. Can't say it ever lessened the pain, but it sure is interesting :) And no, I'm not taking shrooms LOL Cat |
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Title: Re: First time poster with a tip Post by suzy617 on Apr 22nd, 2003, 9:17am Yes Cat, thats what I'm thinking also. I mean, thats all I can do is think about the pain but I wonder if Wslio is talking about redirecting the pain or imagining it to just turn into a ball and roll away...I just cant picture the pain any less if your just focusing on it. But then again, what the hell do i know... ;D suzy |
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Title: QRe: First time poster with a tip Post by Lenny on Apr 22nd, 2003, 10:02am I was just wondering when i go into that DARK-QUIET ROOM, should i sit or LAY DOWN to abort the attack ??? ::) ??? ??? |
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Title: Re: First time poster with a tip Post by Mikey on Apr 22nd, 2003, 12:26pm Dang Lenny, if you can lay down during a CH you are a better man than me, that's for sure. Far as sitting, yeah in a ball and rocking like crazy, I do that alot to deal with my pain. Then to let all the anger out after the beast has TRIED to wup my ass, i really rock out with my guitar, and turn up that amp just about as loud as it can get! Mikey's meditation 8) OH yeah and some narcs Cat! LOL!! :P |
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Title: Re: First time poster with a tip Post by Mikey on Apr 22nd, 2003, 12:33pm on 04/22/03 at 07:43:36, catlind wrote:
I don't believe it for a min. Mikey, ;D |
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Title: Re: First time poster with a tip Post by oringkid on Apr 22nd, 2003, 1:11pm Funny, I analyze the pain! I kinda scrutinize it for any changes, movements, sharpening (which usually for me means that it is almost over) lulls, stabs. I do this I think instinctually. I start when it gets to about a k6 and when it gets to a k8 it is all I can do (along with rocking, ice, fingernails or something else semi pointy in different places on the skull, panting and grunting and groaning!) It doesn't lessen the pain or make it any shorter, but it gives me something active to do (look for any let-up, pattern, etc) Some of the things I look for (or feel for) are: a sharpening of the overall pain (usually heralds the end) stabbing pains (also come near the end) and the lulls, which I use to catch my breath and brace. And of course, anything that I might be doing that stops the pain! Unfortunately, I have never been able to really pin point any particular thing, cuz sometimes it will seem that something stops the pain, and the next time it does nothing! So I'm left with "was this just a short one? or did that actually do something!" Very frustrating! Sherry OOPS! Welcome!! This is a great place for support and understanding! |
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Title: Re: First time poster with a tip Post by Drk^Angel on Apr 22nd, 2003, 3:20pm Welcome to the board! Sorry that the beast is wackin' ya upside the ol' cranium with the flat side of Paul Bunyan's axe. Welcome to the family! Good luck! PFDAN................................. Drk^Angel |
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Title: Re: First time poster with a tip Post by firebrix on Apr 22nd, 2003, 4:23pm Welcome wlsio! Glad you found this site but sorry that you need it. Thanx for the "Focus Earthling" tip - whatever works I reckon! Have a good day - hope its PF firebrix |
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Title: Re: First time poster with a tip Post by Lenny on Apr 22nd, 2003, 6:01pm Why thank you Mikey, The only reason that i am a better man than you,and your right.The answer to that is very simple - IIIIIIIIIIIII Focus,Focus,Focus,Focus and Focus ;D ;D ;D ;D.!!!!! On the serious side: As far as going into a dark room and trying to do what you do during an attack, i would find that impossable to do ( and i have a very high tolerance for pain ) and cant imagine myself doing that. I am very glad it works for you, and hope some others might get some help from it aswell. |
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Title: Re: First time poster with a tip Post by Callico_Kid on Apr 23rd, 2003, 12:49am Welcome aboard! Sorry you are here. I do much the same thing, except I have to use something external to focus on, and I cannot be still to do it. There has to be some sort of action that I can use to redirect the pain, and I have to start with it before the HA is full blown. For anything up to a 7 I can usually get on my computer and do something that is interactive, reading/responding to posts, or researching something that is totally absorbing. If I know it isgoing to be stronger than that I usually get into a computer game that requires total focus and constant interaction. 10's are a different matter! :( I think it is all based on the same concept as the La Maze birthing method that we used quite successfully with our 5 kids. (My wife still doesn't think I worked at it as hard as she did! :) ) Glad it works for you. You can't argue with success! jc |
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Title: Re: First time poster with a tip Post by cluster0557 on Apr 23rd, 2003, 1:02am Welcome aboard and you have my condolences for being a Clusterhead. ??? Get ready for the ride of your life because the jokesters here will give ya one you will never ever forget. Me I am the only sane one here. :) They tell me Jonny is also so go with the flow with him ;D Take care and herex to PFDAN. To the rest of you stress management is the key. Get yourselfs a 75lb heavy bag and beat the tar outta it when you get the next Cluster. It hasn't fixed my head but my upper body is appreciating it along with my heart :P I picture in my mind my bosses face. Is bliss. |
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Title: Re: First time poster with a tip Post by fungo on Apr 23rd, 2003, 1:47am I've been using the meditative "focus" approach for years. It's the only thing I've found that works at all reliably. Blanking ones mind has an obvious benefit: it's like, you can't get rid of the pain, but there's nobody home to experience it. When things get really intense, I do focus on the pain itself. Prior to that, I use less arduous means. Usually, I count. That has several advantages. The natural sequence tends to pull one back into focus, and it gives an automatic time-sense. I get through most attacks in about ten counts of 100, or a total of 1000. Darkness and silence definitely help. When things get a bit more intense, I find that yelling, or rather howling, is good. Again, it provides more focus, as well as some hyperventilation effect. You do need a location (and/or spouse) that's moderately sound-tolerant. Screaming isn't as good; it carries too much overtone of desperation (always a killer), and hurts the throat. I find the idea of redirecting blood fascinating. I've never thought of that. For me, it's just maintaining a mental equilibrium. Panic makes the pain worse; ergo, calm makes it less. And I agree, this approach will totally abort or greatly shorten any of the milder attacks. The main limitation with the "focus" technique is sheer exhaustion. As my mental energies erode, either in the wee small hours, or late in a cluster, it becomes more difficult to achieve the solid focus that's required. And, of course, when the final paroxysms set in, things are always pretty tough... |
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Title: Re: First time poster with a tip Post by cluster0557 on Apr 23rd, 2003, 2:17am fungo, how long do your cluster last? what is their typical duration ? What is the time between clusters ? |
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Title: Re: First time poster with a tip Post by wlsio on Apr 23rd, 2003, 4:34am Hi all,wow what a response,never thought people really cared.Its a real strange feeling knowing you lot are out there. I'm new to the computer so bare with me,i'm not too sure how to reply and quote?. My headaches last anywhere from 20min to 3hrs and I cant always make the focusing thing work(like last night at 1.00am to 2.15am but when I can it works well.It's hard to explain what I do and how it feels but i'll try. First thing is to try and relax(ha,ha)I lay down mostly,I try not to groan,yell,move or anything that I think recognises i'm in pain(make sense???)Then I just focus on the pain itself and it kind of feels like the pain is there in your mind but it's not actually there?(sorry if this doesnt make sense)It becomes like a seperate piece of your mind and even though it's pain it dosen't seem to over power me so much.???????? Enough of trying to explain that :-/IT gives me a headache(not) AS i said it dosen't always work,and it's not easy to do,you need to HANDLE for a little while until you get that true focus.!!I just got it,you know those visual patterns that you stare at and all of a sudden your eyes focus and you see a picture,well it's kinda like that. thanks for listening and giving feedback |
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Title: Re: First time poster with a tip Post by Charlie on Apr 23rd, 2003, 5:56am Hope you're all doing better. Just want to say again that Dr. Wright's technique has nothing to do with meditation. It's entirely physical. This is the hardest thing for me to get across. It will never work if you approach it thinking it's an something out of the 70s. Give it a try again and again. Charlie |
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Title: Re: First time poster with a tip Post by Turts on Apr 23rd, 2003, 6:51am Gday All, I 2 am a newbie, and find the support through the sites information and the knowledge that i am, unfornately, not alone in this "Battle" with the dark side, very comforting and reassuring. I have also experimented and experienced "relief" if it can be called that, through focusing on the circulatory system, and taking the blood on holiday to the calf muscles, by getting into a tippytoe dance of my own, before the devil tries to cut in. Simply standing and raising to my toes as far as I can go and doing this continuely till you feel the same warmth and tiredness as with exercise. (May save some time in the gym as well) lol :D |
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Title: Re: First time poster with a tip Post by catlind on Apr 23rd, 2003, 8:05am on 04/23/03 at 01:02:05, cluster0557 wrote:
bwahahahahaha, what colour is the sky in yer world again ?? ;) LOL You had to know that wouldn't go untouched! ;) :-* Charlie, I know your technique is not meditation. Nothing close to it. I call it biofeedback for lack of a better word. I use the visualizations to find the locations so I can focus on sending the blood elsewhere. I also use a variation on that theme and visualization a pain toggle switch, head pain, on off. Works great for a regular headache, haven't been able to turn 'off' the pain of a ch. Again, it's not the meditation angle, it's literally controlling your bodily functions. I've had liquid nitrogen treatments to my face for psoriasis, and was able to actually start laughing during the procedure because I mentally rewired my brain to think it tickled. I can't explain how to do it, practice helps, but the examination phase of the pain - for me - helps to be able to focus on the redirection of blood flow. Clark can do it in a heartbeat and turn his hands or feet from cold to hot in seconds. I'm not so good at it. It can and does work, but you have to find a technique to let you focus in the right way. Okay I'll stop rambling. I'm probably not making sense anyway as per the usual confused challenged cat hehe. Cat |
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Title: Re: First time poster with a tip Post by cluster0557 on Apr 23rd, 2003, 8:23am on 04/23/03 at 08:05:43, catlind wrote:
I can't tell you the color of the sky... I am colorblind but everyone knows it is supposed to be Orange or Gray ;D. |
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Title: Re: First time poster with a tip Post by fungo on Apr 23rd, 2003, 8:55am FYI: I've been having clusters for about 30 years. They typically come on every two to three years, usually in the springtime (hello!) and last about a month to six weeks, although last time the series seemed to abate after a month then re-started and went on for almost four months. Individual headaches start at about 5 minutes at first, gradually getting longer. Towards the end of a cluster, I get a day or two when the pain is fairly uninterrupted. Very nasty. What I do is definitely meditation-based. I've studied meditation, albeit pretty casually, and I have long known of its beneficial effects. (Nothing mystical about this. Call it stress-relief if it makes you feel better.) I discovered early on that my mental state had a lot to do with how the cluster pain affected me. "Giving in" to the pain, or worse yet, panicking, made it seem a million times worse. (That's a million times a million...) Calm doesn't make the pain any less, but it does make it more manageable. There are other possible mechanisms. Meditation can certainly help release endorphins. It may also help with serotonin-related effects, potentially providing action along the lines of the ergot-derived medications. And sure, maybe there's some sort of basic biofeedback effect as well. Although I've never attempted any specific action, such as redirecting blood flow. Actually, clusters seem so elusive, one has to wonder if there isn't a larger mental component than is usually acknowledged. Maybe it's all in our heads... I usually curl up in a kneeling position, with my head bowed forward in my hands, either directly on the floor or on a flat cushion. And I certainly do all the other stuff people have mentioned: tensing muscles, rocking, bouncing, running... anything to distract myself from the pain. But always with the goal of blanking my mind. As I said, the least this can do is help one "evade" the pain. Interestingly, however, allowing my mind to wander, say by following some pleasant train of thought, doesn't work, and in fact may make the pain flare up even worse. It's the rigid focus that works best. Late in a cluster, I have less success. Then I may have to face the pain head-on, as it were. When I eventually succeed in letting it wash over me uninterrupted (typically after my mind is battered into submission by several hours of agony), things usually start to get better, and the cluster will abate. I feel very sorry for anyone facing a cluster with no sort of mental discipline handy. I did that a few times early on, and bad as the clusters are now, those times were the worst. |
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Title: Re: First time poster with a tip Post by Mark C on Apr 23rd, 2003, 9:00am Welcome newbies! Good thread....my two cents worth .... I have had CH since I was about 13. I turn 42 this year. I get one or two cycles a year that last from four to twelve weeks with three to ten attacks a day. Thats a lot of pain. I have had many, many hours alone with the beast, talking, pleading, cussing threating......I have examined the most perfect pain from every angle possible thousands of times. I have learned very little about CH except it hurts very bad. Many of the mental techniques in this post have worked for me......up to a point. I am able to sort of "ignore" an attack for a while, even after the eye starts tearing, maybe a K6 or K7. You know, keep working or doing whatever hoping it will pass before getting too bad....some do pass.....many do not. Once the pain cross the threshold of my ability to function it's time to isolate....once I am in this place no one can help me...it's just me and the beast. In this place no amount of mental process will help. It's much more rudimintary in nature, more like am animal would respond, swaying, moaning, beating my head against the wall.....you know. Big Fat Imitrex (http://www.gsk.com/products/imitrex_us.htm) shot is the first, and so far, only thing that can get me outta there, that dark hole of perfect pain. I still get hammered but at least I finally have a hammer of my own.....YOU GUYS!. PFDAN's Mark |
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Title: Re: First time poster with a tip Post by Big_Dan on Apr 23rd, 2003, 10:18am Hey, wlsio.... Glad you found the place, sorry you needed to though... .. anyway, I think I know what you're talking about. My last headbanger, I tried to calm down, lay still and not beat my head against the nightstand for about 5 minutes.... but alas, I caved. I think it can be done for a few of the smaller attacks, but when I'm getting an 8, 9 or 10.... I'd rather fight it.... -Big Dan |
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Title: Re: First time poster with a tip Post by cluster0557 on Apr 23rd, 2003, 10:45am On the serious side If a cluster is moderate to heavy in pain (lees than 7) I usually can deal with it thru stress relief by either going for a walk with my labs or by working out with a heavy bag. In these cases I will suck down O2 for 15 minutes and then deal with stress relief portion If 7-10 pain level it is time for meds. I will do deep breething exercises and rock on my heels and just about anyrhing else to take mind off pain while I wait for the Imitrex on pain releiver to kick in. I have walked many a mile in my house with hot towel on temple and distracting myself from the pain. Most of the time where they are severe I need to be in motion. Cannot sit still thru 9-10 level pain. |
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Title: Re: First time poster with a tip Post by wlsio on Apr 24th, 2003, 3:00am Hi again,I didn't think anyone would understand what i was trying to say,but hey I got through to some.I hope it helps some people get through at least some of their pain easier. I woke up this morning with probably an 8 or 9 and I couldn,t focus,but i still don't try and let the pain dominate.I gave up years ago on yelling,banging walls,etc,etc,I never found that any of that stuff ever helped just made it worse.Yes I know it is easy to say doný let the pain dominate ,it's not f@#$%^ easy. Anyway I couldn't focus this morning on the pain so I resigned myself to having to deal with some horrible pain and i went downstairs with a cigarette and a book,yes a book.I sat back and smoked and try to read and let the pain just happen(reading was impossible at first)After 10 blows of the nose and a cup of tears from my eye the pain actually started to subside.It took about 15 minutes before it started to fade.Some of you may not think that is possible with intense pain and my pain can't be that bad but believe me it's bad pain.As ivé said ivé been through headbanging , drugs ,etc and focusing ,or mind control works for me far better than anything else.It's getting through the first stages that are the hardest. Once again thanks for being there. |
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Title: Re: First time poster with a tip Post by fungo on Apr 25th, 2003, 11:21am Lately, I've been panting and barking like a dog. Sort of an "Island of Dr Moreau" effect, only in reverse. The neighbors probably think I've opened a menagerie. |
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Title: Re: First time poster with a tip Post by cathy on Apr 25th, 2003, 11:53am Wisio..... W E L C O M E Fungo.... W E L C O M E Turts..... W E L C O M E Cathy :) |
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Title: Re: First time poster with a tip Post by Slammy on Apr 25th, 2003, 11:54am on 04/25/03 at 11:21:50, fungo wrote:
heheh..... sounds like a typical friday night for the Slamhound! ;D Slammy http://www.uselessgraphics.com/devil09.gif |
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