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Title: Clusters? Post by hank1212us on Aug 8th, 2006, 8:43am Hey all....I am new to this (fortunately) but I have been trying to figure out if CHs is what I have been experiencing. I have taken the quiz but I feel it was inconclusive so maybe someone here can help. I have never been a big headache person but in the past 3-4 months I have been hit with some severe ones that seem to fit the profile of CHs (daily, same time of day, same side of head, feels like my eye is going to explode, neck and jaw pain after it sets in, don't think that I have experienced eye droop but I haven't focused on it, also don't recall nasal issues either)Alcohol has def. been a trigger on occasion but sometimes they come on without it. They typically occur in the early evening and more so on a weekend rather than a weekday. I have never been awakened to pain (crossed fingers). Lastly, they are extremely painful but not suicide inducing (I want to stick a pencil in my eye but have not really felt like banging my head against the wall). If I take 2 Excedrins (regular if it is early in the evening, PM if it late in the evening)when I feel the first tinge in my eye, I can put a halt to it. I can also lay down until the exedrin takes effect and even go to sleep, awakening pain free. I rode the first through without anything (no access) and it lasted about 2 hours. I have a doctors appt. next month and will discuss but after reading this website I have to say that I am scared out of my wits. It would seem that my symptoms are less severe than many of yours so I wonder if the pain, frequency, etc. will increase over time. Any feedback you all can provide would be great. Thank you so much. |
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Title: Re: Clusters? Post by E-Double on Aug 8th, 2006, 9:05am Sounds like ya may have hit the jackpot. Some present with aatacks that are not super severe yet hurt like the living daylights....Pain is of course relative yet we here have a scale (kip RIP) that describes the behavior that we may exhibit that coincides with pain. It all sucks! There are a few who do lay down and try to zone. I don't think one can lay down and sleep unless it is a lower level "shadow" as we call it. I hope you do not have CH but if so, please let us know and you will be guided through and supported like ya wouldn't believe! Get yourself to a headache specialist! E Edited to add: Noticed you are from Jersey. How far are you from Philly? There is Jefferson HA center which is run by some top notch Dr's who know their CHit ;) or take the trip to Stamford CT. Where New England Center for HEadaches is located. I go there travelling from Long Island. Good luck! |
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Title: Re: Clusters? Post by georgej on Aug 8th, 2006, 9:11am There's no substitute for having a clear diagnosis. Taking the cluster quiz may give you an indication, but you need to know for certain. CH is not, in itself, suicide-inducing. It is extremely painful, yes, but I don't think that many of us would contemplate suicide because of headache alone. Yes, alcohol is a trigger for most of us, particularly episodic clusterheads when in cycle, but the headaches occur when alcohol is not used. It's just that alcohol will frequently cause a hit. The locations where your headaches occur seem to fit the profile, all right, but aborting with excedrin is counter to most of our experiences. Not saying it isn't possible, but just that it's counter to what's true about most of us. We're all different. Same goes for the tears and nasal blockage. Very common for this to happen, (it happens to me), but it's probably not a universal thing. It's common for many who are new to CH to experience sporadic hits with no discernable pattern. Frequently, these settle into more-or-less well-defined patterns after a time, particularly with episodics. But not always. One of my very good friends here experiences only hits that show no pattern, although she's had CH for quite some time. Awakening to a headache would be a strong indicator, sure, but it's by no means universal. Lastly, don't be frightened. Truly. It's possible to live with these things, and live well and fully when you have the right support, the right meds, and the right attitude. We'll be here, and we'll help you through it. Best wishes, George |
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Title: Re: Clusters? Post by seasonalboomer on Aug 8th, 2006, 9:15am Hank, Welcome to the site. The symptoms you are describing seem to be consistent with CH. There's a few traits that I can understand your confusion when evaluating what you're experiencing versus classic CH traits. Not everyone experiences CH in the same way. One person's suicidal-level pain may another person's "extremely painful" as we're all worknig from different levels of pain tolerance. You might check out the Kip Scale as it describes the different pain levels in a relative manner. Some will say they could never think of laying down with a CH and that anyone that can has something else going on, and many times I feel the same way. There was a time, early on, when I could eventually find a way to lay down. I don't seem to be able to do that now until I'm so wore out there just aren't many other options. What's the wait on the doctor? Next month? If you could get in to see him sooner you find that you could get some help in the form of an Oxygen tank for treating a headache, which would allow you to not have to be loading up on Excederins, which can result in rebound headaches. As for not being woke up by them, some people have different patterns. There's certainly not a "preference". The most important is to see a doctor, and preferably get in to see a neurologist who has experience with Cluster Headache. They'll know what to look for, and in most cases, what you need for preventative and abortive treatment. See the list on CH.com for a doctor in your area. Read up, there's lots of info around here. Print what you can and take it to the doctor with you. Scott |
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Title: Re: Clusters? Post by Charlotte on Aug 8th, 2006, 9:32am Sometimes, when you can't get to the doctor for a month, the dr or his staff can still communicate with you by telephone & email and actually help a bit before you get there. A month is too long to be untreated. It could conceivably be all over before you even get there. Does the dr have access to your past medical history or is this a new doc? Charlotte |
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Title: Re: Clusters? Post by kcopelin on Aug 8th, 2006, 9:56am Yep..I agree. Get in for diagnosis while the headaches are still ocurring. I hope it's not CH but there are worse things. Hang in there, and I'm glad you found us-can get a lot of support and help at this place. Kathy |
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Title: Re: Clusters? Post by kevinpix on Aug 8th, 2006, 10:35am First before you freak out, do your homework. I get hit mostly when I'm in "relax" mode. After sex, after a hard days work, or even on vacation. It seems that when we are resting, the beast comes a knocking. I try to stay busy, I've been digging my pond out by hand, atleast 5 years to go, glad to have something to do to keep headaches away. Talk with your doctor about preventative meds, breathing exercises, anything that will help you with dealing with the pain. And, to your question about the headaches getting worse, I'd have to say yes. For me, they weren't too bad. I'd just grunt they away, then I went for the over-the-counter meds, went to dentist thinking I must have infected teeth, stupidly had most removed. I wear partials now. I thought I was having seizures, migranes, and now I'm a chronic clusterhead. Hopefully you won't travel the path I took, but atleast you can talk to your doctor about the different possible means for your own treatment. Let us know what the doctor says and we will continue to support you and give you advice. Have a painfree day!!!! Kevin P. |
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Title: Re: Clusters? Post by serendipity on Aug 8th, 2006, 11:06am I definitely wouldn't rule out cluster headaches just because your tolerance to pain may be higher than some. I am 100% certain that I have cluster headaches, but I am almost always able to lie down during even the worst ones. There have been times when I have considered "doing something crazy" in order to end the pain, but I have still been able to lie down and remain relatively still. Having said that, I have given birth to three children with absolutely no medication and didn't so much as shed a tear or cry out, but the pain I experience with even a mild cluster headache (kip 4-5) makes the pain of childbirth pale in comparison. Judging by what you've described, the diagnosis of this untrained unprofessional is that you are having cluster headaches. Best of luck to you. Keep us updated on the results of your doctor visit. |
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Title: Re: Clusters? Post by starlight on Aug 8th, 2006, 12:07pm Hank, It does sound like it may be clusters. I started getting clusters when I was 14 (am now 32) and they were quite a bit more tame than they are now (I don't mean to scare you though). They first started during day rather than night (and I did not have a full 6-8 week cycle in high school)--I would get one a day with some skipped days. They did hurt like a son of a bitch but at that time I could lay down in nurse's office of school (which I can not lay down with them now cause they hurt too much). But interestingly, if I got them at school with no heat available they would last quite a long time. Also treatments that helped back then like a hot shower, hot water bottle, etc. don't work now. But Hank, if you do have clusters there is reason for optimism. Treatments that back then I had never heard of like O2, melatonin and all these other wonderful drugs out there can make life much much much more comfortable and less painful. So don't be afraid or alarmed. We'll talk you through it and help you out. |
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Title: Re: Clusters? Post by starlight on Aug 8th, 2006, 12:19pm Also with excedrin--doesn't that caffeine in it? If it does that is probably why it is helping you when you pop one when you first feel HA coming on. some people find that a strong cup of black coffee helps at the first sign. |
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Title: Re: Clusters? Post by rickyshot on Aug 8th, 2006, 2:48pm Sounds like clusters to me but you need the diagnosis. I started off similar to you and unfortunately as the year went on got progressively worse into screamers and head bangers. At kip 2-4 I can lie down but tend to move in bed. I am not perfectly still. I work at kip2-5's, go nutz. Until you get to the doc try a red bull with your excederin at the first sign of the attack but I would not wait a month. A month of wait with uncontrolled CH could lead to suicidal thoughts IMO. After 22 years of these things after the first week in cycle I am crazy still. Let us know what the docs say and what treatment they are starting you at. |
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Title: Re: Clusters? Post by Margi on Aug 8th, 2006, 3:15pm on 08/08/06 at 08:43:28, hank1212us wrote:
I'm gonna go out on a limb here and disagree with the concensus... all of those things can indicate migraine. My hubby is a clusterhead, I'm a migrainer. I've experienced all of those symptoms you mention, the regularity, the eye thing, the alcohol effect (especially red wine: instant trigger), the sleeping it off part. Migraine is no walk in the park either and can be of a shorter duration as you mention. That cluster quiz was designed to point you firmly in a yes or no direction for cluster...if it's not doing that for you, I'd definitely keep digging. At the end of the day, remember - not one of us is a doctor here, we're all patients. Misdiagnosis can be lethal, especially if they prescribe you cluster meds for migraine or some other h/a type. I dunno.....I still say migraine. Hope you find some relief and some answers soon. Migraines suck too. :( |
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Title: Re: Clusters? Post by Bob P on Aug 8th, 2006, 3:16pm There ain't a person alive who can sleep with a cluster headache! |
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Title: Re: Clusters? Post by chewy on Aug 8th, 2006, 3:38pm Or lie down. |
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Title: Re: Clusters? Post by Bob P on Aug 8th, 2006, 4:04pm Quote:
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Title: Re: Clusters? Post by chewy on Aug 8th, 2006, 4:22pm Or lie down on purpose |
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Title: Re: Clusters? Post by serendipity on Aug 8th, 2006, 4:43pm Absolutely untrue. I just happen to have a very high tolerance for pain (I guess that's what it is). I can almost always lie down. In fact, it's the only way I can cope most of the time. If I let myself do the head bashing, rocking, etc. that I used to do when I was young and inexperienced with how do deal with my pain, I get into a state that I can only describe as insanity. Lying still and getting myself into as much of a trancelike state as possible is the only way I can cope. Hank, everyone's pain is different and we all handle it differently. To try to pigeonhole yourself into the "classic" cluster headache sufferer is just not going to happen. Your pain may be very different from someone else's, as will the way you handle it. Oh, and before I forget. I agree completely that a month is too long to wait for a diagnosis. If there's any way he can see you sooner, I'd push for that. |
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Title: Re: Clusters? Post by Margi on Aug 8th, 2006, 5:06pm on 08/08/06 at 16:43:08, serendipity wrote:
Sorry, don't mean to cause a firestorm here but...don't you kind of contradict yourself in your post if you say no one is alike, yet the inability to lie down is 'absolutely untrue'? For you, maybe, but you go on to say that everyone is different Just an observation. And I gotta tell ya - not directed to anyone in particular, just a vent really. I've talked to many genuine clusterheads here over the years and one thing that consistenly amazes me IS the startling similarity in how they describe their pain, their reaction to it, and how closely their symptoms match. To me, there are only two types of cluster: episodic and chronic. They are a wee bit different from each other but they are of the same nature. Both fit into pretty well-defined boxes. When we see symptoms that stray from the norm, that quite often indicates another type of headache. True cluster IS very rare. I am always gobsmacked that there are SO many "clusterheads" here. I mean, I know DJ has himself hooked up to a lot of search engines but....holy WOW! Like I said, true cluster is rare. I think there are hundreds, if not more, misdiagnosed people here at this website. That could be genuinely the fault of their doctors who dump otherwise unidentifiable head pain into the cluster box. Or, it could be folks who haven't yet seen a doctor but feel qualified to diagnose themselves over the internet. I've seen some of the more regular posters here have their symptoms morph over time until they closely match that of a cluster diagnosis (that part I never understand). There are a lot of good learning tools here that could easily teach anyone how to be a clusterhead. It's a double-edged sword - do we provide the info for confirmation and help to the genuine sufferers, or do we not put it up there for fear of someone developing symptoms by osmosis? For those of us that live with genuine cluster, it is unimaginable why anyone would WANT to be a clusterhead. If these people ever really SAW a true cluster, I'm sure they'd run screaming. Granted, it's a great community here - great friendships have formed, even a few weddings and babies born, lots of online relationships and 3D meetings have taken place, many parties. It's a very social atmosphere here which is actually quite ironic for a clusterhead. Most prefer to be left totally alone, although the therapy of meeting another genuine clusterhead is unmatched. Another double-edged sword I guess. But why people are so intent on immediately accepting a total stranger into the "cluster" diagnosis just because they show up with head pain...well, that's a part I will never understand. Absolutely no offense to the original poster of this thread - please understand that. I still don't think you have clusters but I do respect your pain and urge you to get an accurate diagnosis. Stepping down off my soapbox now, running and ducking... |
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Title: Re: Clusters? Post by serendipity on Aug 8th, 2006, 5:17pm You misunderstood me. I said it's absolutely untrue that no one can lie down with a cluster headache, I didn't say that everyone CAN lie down. Either way, it's irrelevant. I just think it's very important not to make blanket statements like that, because everyone is so different. Some people may be able to lie down, others can't. Hank is brand new to this. It might be best to present him with all the options instead of one person's version of how things should be. Also, have you read the "Describe Your Cluster Headaches" thread? What's interesting to me when I read everyone's responses is how so many of the elements of each person's pain seem to be identical, but at the same time there are also many, many differences (triggers, duration, behavior during a CH, etc.). The minute someone says, "no one" or "everyone," all sorts of alarms start going off in my head. I mean no offense. I'm a fairly new poster, although I've lurked here for years, but I'm not new to cluster headaches and although my experiences may be different, they're still valid and (hopefully) sharing them will be helpful to someone. |
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Title: Re: Clusters? Post by Jonny on Aug 8th, 2006, 5:25pm Fantastic post, Margi!!!! |
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Title: Re: Clusters? Post by Linda_Howell on Aug 8th, 2006, 5:25pm Quote:
Who'd-a-thunk that I could not be in more agreement with BobP on this one. IT IS THE ONE MOST SINGULAR THING WE HAVE IN COMMON HERE. I do not believe for one second that pain tolerance has anything whatsoever to do with this. Every one of us has a pain tolerance that would shock a Sumo wrestler, Mohammad Ali, commercial fisherman, a woman giving birth to triplets, pr a Canadian Hockey player. |
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Title: Re: Clusters? Post by serendipity on Aug 8th, 2006, 5:27pm Quote:
Now there's a statement I think everyone can agree on! Linda, you may be right about the pain tolerance thing. It's just the only explanation I've ever been able to come up with as to why some people react differently to the pain. |
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Title: Re: Clusters? Post by Margi on Aug 8th, 2006, 5:29pm on 08/08/06 at 17:17:52, serendipity wrote:
Sorry. I majored in English and that double negative still kinda throws me I guess. My bad interpretive skills then. I still stand by my belief that the clusterhead profile IS very well-defined and quite exclusive to all other h/a diagnoses. I know a lot of people disagree with this but that's ok. The only reason I speak up at all about this is the fact that people are being prescribed meds that could be lethal to them if they don't have clusters. We have vasodilators, vasoconstrictors, blood pressure reducers, mood enhancers/stabilizers, a whole sh'bang of potentially lethal stuff if the patient is diagnosed incorrectly or there is underlying disease of another nature. If you don't have cluster, why would you want to take any of this stuff? THAT's why I get on my soapbox from time to time. Edited to add: no, I haven't read that other thread. For reasons cited above I guess - that I get pretty discouraged to see all the misdiagnosed folks here. p.s. to Jonny - well THANK you! :) |
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Title: Re: Clusters? Post by Jonny on Aug 8th, 2006, 5:31pm I started chronic CH when I was 12, ill be 44 next month....I have never once been able to lay down when under attack....Ever. Maybe Im just a pu-ssy....LMAO ;;D |
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Title: Re: Clusters? Post by kcopelin on Aug 8th, 2006, 5:35pm So my first clusterheadache? I swear I flew out of bed screaming-thought my husband had hacked my face with a blazing hot hatchet. That was 25 years ago. I can attest that, for me, to sleep during a cluster is an impossibility. So I must agree with Margi, Linda and BobP here-sleeping it off, or lying down, or sleeping while being hit seem to point towards a different diagnosis. IMHO (which in my universe is correct) kathy |
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Title: Re: Clusters? Post by Margi on Aug 8th, 2006, 5:36pm on 08/08/06 at 17:35:34, kcopelin wrote:
ROFLMAO - man, I just LOVE that saying. Mind if I print it on a t-shirt? LOL LOL thanks Kathy! :) |
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Title: Re: Clusters? Post by kcopelin on Aug 8th, 2006, 5:37pm And I suppose I agree with Jonny, also ;;D kathy |
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Title: Re: Clusters? Post by kcopelin on Aug 8th, 2006, 5:38pm Yes Margi, in my universe you can put anything you want on a t-shirt ;;D kathy |
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Title: Re: Clusters? Post by serendipity on Aug 8th, 2006, 5:41pm The first neurologist who ever diagnosed me classified mine as a "hybrid" of cluster headaches and migraines. His reasoning behind doing so was because at that time it was widely thought that true cluster headaches only lasted 15 minutes or so. Eventually that diagnosis was thrown out the window and I now know that I have regular old cluster headaches, but reading back through Hank's original post, I'm wondering if maybe he really does suffer from some sort of hybrid headache, if such a thing even exists. Does anyone know whether or not that's even a possibility? |
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Title: Re: Clusters? Post by Margi on Aug 8th, 2006, 5:48pm if your doc thought cluster only lasted 15 minutes, then it's not surprising that he came up with a "hybrid" diagnosis. Sorry, but if he WAS on the ball, he would have pointed you more towards CPH using that line of reasoning. I believe people can get both migraine and cluster (at different times though, not as one type of headache) but I still see nothing in Hank's post to indicate cluster. As I said, all things he mentions, I've experienced as a migrainer. Migraine has many variants, I believe cluster does not. Only episodic and chronic. I think we see a lot of migraine variant headaches here. More than cluster anymore. p.s. to Kathy, thanks, I've updated my tag line with it. LOL |
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Title: Re: Clusters? Post by serendipity on Aug 8th, 2006, 5:58pm What's CPH? And this was back in 1989 or 1990. I don't think most neuros knew a lot about cluster headaches back then. Anyway, he's not my doctor anymore. |
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Title: Re: Clusters? Post by Margi on Aug 8th, 2006, 6:01pm Chronic Paroxysmal Hemicrania - same pain as cluster, just far shorter in duration. Almost 100% responsive and curable with indomethacin or indocin. |
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Title: Re: Clusters? Post by Linda_Howell on Aug 8th, 2006, 6:11pm Quote:
Nooooooo Jonny. Next month you will be 39 years and 60 months. ;;D |
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Title: Re: Clusters? Post by Bob P on Aug 8th, 2006, 6:30pm I tried laying down once also. Just couldn't do it. The pain is soooo much worse laying down. Now I just sit in a chair, elbows on knees and head head hanging down. Have to look up every once in a while to find the tissue for the stream of tears and river of snot. |
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Title: Re: Clusters? Post by Linda_Howell on Aug 8th, 2006, 6:41pm ::) We don't need the visuals Bob. Really. |
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Title: Re: Clusters? Post by serendipity on Aug 8th, 2006, 6:41pm I suppose I should add the caveat that since I started using oxygen therapy I don't actually lie all the way down, for fear that I'll fall asleep with the mask on and suffocate. It's more like reclining on the couch in a partial sitting position, because like Bob said, that position is more conducive to catching the ooze. What an attractive bunch we are! |
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Title: Re: Clusters? Post by Margi on Aug 8th, 2006, 6:43pm on 08/08/06 at 18:41:20, Linda_Howell wrote:
but he does it so well though, doesn't he, Luinda? :) He puts his head head down too, I see. Apparently, stuttering is a problem for him too. |
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Title: Re: Clusters? Post by Jonny on Aug 8th, 2006, 6:50pm on 08/08/06 at 18:43:26, Margi wrote:
Or hes naked.....LOL ;;D |
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Title: Re: Clusters? Post by Linda_Howell on Aug 8th, 2006, 6:51pm Margoo, hand Bob the tissues so he doesn't have to even look up. [smiley=bag.gif] Sorry to any and all posters here who don't understand why their threads go awry. ::) |
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Title: Re: Clusters? Post by Margi on Aug 8th, 2006, 7:19pm see, now, Jonny - I WAS going to say 'well, apparently Bob has two heads' but then I thought better of it and I saw that you were online at the time. Boys ::) LOL Yes, sorry - Hank - hope you are able to sift through all the....stuff.... here and find some answers. |
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Title: Re: Clusters? Post by hank1212us on Aug 8th, 2006, 7:24pm First off, I want to say thanks to everyone for being so incredibly responsive and forthcoming with information. My intent was to get some feedback as I had never heard of clusters prior to finding this website as I was hunting around to find symptoms that matched mine. As per my first post, I have been able to kill the pain every time (so far) with Excedrin (have 4 in my pocket right now) so I don't know if what I am having are actually cluster headaches though the location of the pain seems to deem them as such. I have my doubts now after reading your posts as the intensity doesn't seem to match what you all have discussed (maybe it would if I didn't eat the excedrin, but I can't really see taking that leap just to find out). Regarding pain tolerance, I have none, so it doesn't seem to me that I can withstand something that all of you seem to be crushed by when it hits. Like I said, I am not out to self diagnose, just get some information. I would like to say, however, that all of you are fantastically strong people to have been able to deal with this long term...I can only hope that that won't be the case for me....scared s-less at this point! |
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Title: Re: Clusters? Post by Bob P on Aug 8th, 2006, 7:31pm Quote:
36 years episodic. BTW - Hank - many years back I would take 3 asprin every 3 hours while I was in a cycle. Hoped it may take the edge off the attacks when they came. It didn't and all I wound up with was a duodenal ulcer. So now, to the picture I painted above, you add hurling blood. Talk about feeling puny! (or is that 'phewknee') |
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Title: Re: Clusters? Post by Jonny on Aug 8th, 2006, 7:34pm Hank, Call your doc and see if he/she can fit you in if someone else cancels an appointment. |
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Title: Re: Clusters? Post by starlight on Aug 8th, 2006, 11:01pm Hi all-- I see there's a bit of a discussion about whether a cluster head could ever lie down. I do not mean to claim any expertise on cluster headaches, only experience--nearly twenty years of it. I have been diagnosed as having cluster headaches by 3 different neurologists as well as the head of a very respected headache clinic. When recently describing my headache history to him--all 18 yrs. worth--I told him that I could initially--in high school--lie down with the headaches with a hot water bottle on my eye. In college I would cry with them, take a hot shower in the dorm, and throw up in the toilet in the bathroom (again I know not all cluster heads vomit). In my twenties, the headaches became much more painful, and, in fact, my last cycle, I experienced one headache at the peak of my cycle that the KIP pain scale does not have a number to describe--it was a crescendo of pain far worse than I could ever have comprehended--during the attack I had SEVERE hot flashes and after the attack ended I had some kind of a seizure--the doc said that is from pain. All of the above I have written here was told to doctor and he said that the progression that I described is pretty typical for cluster headache. |
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Title: Re: Clusters? Post by starlight on Aug 8th, 2006, 11:11pm Anyway, sorry I had to send this through in two sections (my computer is acting weird). Point being, in my twenties I could not lay still or lay at all. I do the dance that is described here on the boards, rock rapidly at lower pain levels, curse like a sailor or run around frantic, whatever the pain level propels me to do. Also past couple cycles I get the severely running one nostril and tearing eye. This cycle is the first cycle that I have had where I have the drooping eyelid. These classic "signs" I did not have as a teenager but I assure you they were the same headache (cluster) behind the same eye. The headache clinic doctor told me that my headache history is very typical in the respect of increasing pain levels each cycle, increasing frequency of headaches over time (one a day as teen, now 5-6 a night) lengthening of cycles (cycles became a regular length 6-8 weeks as opposed to 2, 3, or 4 weeks as a teen) when I was 20, along with increased "agitation" and what amounts to writhing in pain during cycles over time. Now sleeping with a cluster I have never done. But please guys, if someone says they can lay down during a cluster they may very well be telling the truth. |
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Title: Re: Clusters? Post by starlight on Aug 8th, 2006, 11:25pm One other thing I wanted to add: one of the most challenging things for me dealing with clusters was the deep discouragement of having "regular docs" the kind you see when you are a teen and in college first 1) greet me with total skepticism (what do you mean you have headaches every day/night?) 2) prescribe me oodles of migraine meds that did nothing 3) eventually hand me the number of a psychiatrist. Meanwhile I am in pain--very hard pain--and lots of sleep deprivation in college. I told my parents several times I wanted to kill myself. I never thought anyone would help me. It took me till my mid-twenties to see a neurologist. So I err on the side of believing people. Granted there may be people who make things up, but that is not a concern of mine. I would rather just believe people are telling the truth b/c I know what it is like to have doctors think I was crazy cause I was a teen girl getting headaches every day (and then they switched to night). So I will err on believing people unless whatever they are saying is completely outlandish. |
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Title: Re: Clusters? Post by chewy on Aug 9th, 2006, 7:19am We've come full circle. At one time true CH suffers were getting mis diagnosed and mis treatred on a regular basis. Now everyone with 2 bad headaches in a row are being diagnosed with CH. Quote:
You bet it does! |
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Title: Re: Clusters? Post by serendipity on Aug 9th, 2006, 7:40am I've been diagnosed by more than one neuro, as well. Even if I had never even seen a doctor, though, I'd know that I DO have cluster headaches. Whoever made the statement that they didn't understand why anyone would want to be a cluster headache sufferer hit the nail on the head. This isn't something I'd ever want to have to live with, but it is. My husband can tell you that there have been times when I've been Chuck from the video, much moreso ten or fifteen years ago, though. I can now manage my pain better (ususally...not always) and rarely have a CH that brings me to the brink of suicide, but I've been there. Boy, have I. Whether my being able to deal with them better now is because of a higher tolerance for pain than I used to have, getting better at self-hypnosis or what, I have no idea. I can't even fathom being able to sleep through a CH. I can barely sleep when I'm having bad shadows, but others here have mentioned (several examples in the "Coping" thread) being able to sit still and quietly during a CH. Is it such a leap that someone would be able to lie down? I don't get the hostility, guys. I thought this was a support group. A bunch of people hinting that I don't really have cluster headaches is hurtful, I have to tell you. I DO have cluster headaches. There's not a doubt in my mind. I don't want them, but they're here and it doesn't look like they're going anywhere since I've had them for 17 years now. I'm quite certain that not everyone who thinks they have cluster headaches has them, and not every doctor makes a correct diagnosis, but I know what I have and I don't appreciate the hostility because ONE aspect of my CHs doesn't match up with some of yours. I came here to support and be supported. If that's not what this place is about, just let me know right now and I'll be on my way. starlight, this is not directed at you. |
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Title: Re: Clusters? Post by Charlotte on Aug 9th, 2006, 8:58am on 08/08/06 at 17:48:06, Margi wrote:
Each medical professional I see adds or subtracts to the last diagnosis. Friday, my diagnosis not ch, not cph, & not migraine. Cathi04 called me at home and helped me figure out this strange diagnosis. Thank you for all the help and moral support I've gotten here. This is a site specifically for ch. People here have offered to help me get through this, no matter what it is, and I need that, especially now. Technically, I now do not belong here, so eventually I will either find a role as a supporter or wean myself away, but for now, this is my home & I'm staying. Once again, thanks, everyone. ps lol, I'm answer e - none of the above |
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Title: Re: Clusters? Post by E-Double on Aug 9th, 2006, 10:43am I'm gonna throw another wrench into Hank's hijacked thread...... Cootie's husband Brad will lay down. She has mentioned this numerous times. There is also research suggesting longer and longer CH attacks that are not back to back hits but one long continuous attack. In addition there is research on Phantom attacks (many will always discredit that but it is in the literature) I was a pacer, a banger, a pounder and a screamer. I am now a rocker, and a groaner........ I found that not fighting it and trying to go with it is much easier. I also get several headache types though I personally can not sleep through even a CH shadow. I can lay down @ low level but not still and I will grind my head into a pillow...........nevermind it's still brutal agitation therefore I usually get up.oh well. When I get a migraine or a bad tension headache, I want to be still. When I get icepiks I am also antsy to the extreme. Good luck regardless of what you all have. Clusters suck! HA's sucks! |
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Title: Re: Clusters? Post by Linda_Howell on Aug 9th, 2006, 11:39am Quote:
:o :o Hostility???????? :o :o What Hostility???? Jeeze.........Between everyone here we probably have 100's of years of experience with CH and Neuros. With the exception of a few "fun" posts between Margi, Bob and I ....I'd say we are all just "discussing" things in this thread, which is what we do on this site. |
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Title: Re: Clusters? Post by chewy on Aug 9th, 2006, 11:50am Quote:
It's called an informed opinion. |
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Title: Re: Clusters? Post by serendipity on Aug 9th, 2006, 12:05pm Maybe "hostility" is too strong a word, but I am definitely getting a negative vibe here, between having the phrase "absolutely untrue" being picked apart and then labeled as a double negative (which it isn't), and several people implying that I don't have cluster headaches by saying things like, "No one who has cluster headaches can lie down" and "Now everyone with 2 bad headaches in a row are being diagnosed with CH." The implication that certain people aren't really having clusters is definitely there. Put yourself in my shoes for a minute and see if it feels like hostility to you. I'm all in favor of discussion here, but after struggling with the beast for as many years as I have and coming to a site like this for support, only to have people hint around that you're not really having CHs...them's fightin' words. P.S. It's entirely possible that some of you are having a tough week and are therefore not as positive and welcoming as people would be on a bird-watching forum. I'm having one of those weeks myself (week 3 of a cluster and hubby out of town for a month). The last thing I want is to get started on the wrong foot with any of you, so I'll try to keep my talons trimmed. Hank, sorry about your thread. I hope you were able to glean at least a little bit of information and support here. |
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Title: Re: Clusters? Post by pattik on Aug 9th, 2006, 12:13pm on 08/09/06 at 07:40:17, serendipity wrote:
It is, as well as an information exchange. Frankly, I don't understand your taking such offense. |
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Title: Re: Clusters? Post by Margi on Aug 9th, 2006, 12:40pm Nope, no hostility intended nor a judgement on whether you, personally, are a clusterhead or not. More just an opinion of a stereotypical headache sufferer that arrives here without a good diagnosis. Like Linda says, combined we have so much direct cluster knowledge and experience, that it's easy to pick out red flags when we see them. We focus entirely on cluster here and limit our research to that subject. Neurologists aren't afforded that luxury as they deal with so much other stuff. I'm not saying we're better than neurologists by a long shot - we're just a really good focus group with a strong knowledge pool. I'm pretty thick skinned after being a cluster supporter for nearly 20 years and I sometimes wrongly assume that everyone in this community is as well. If I've offended you, please know that that was not my intention. I thought this was a pretty good discussion actually. :-/ |
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Title: Re: Clusters? Post by E-Double on Aug 9th, 2006, 12:41pm Just because I am a teacher I will tell you that it was not our English major's suggestion that "absolutely untrue" is a double negative BUT "absolutely untrue that no one...." That is a double negative. :-* That's it. Hugs to all whether you have them or not. |
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Title: Re: Clusters? Post by Margi on Aug 9th, 2006, 12:42pm thanks, Eric :) :-* |
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Title: Re: Clusters? Post by chewy on Aug 9th, 2006, 12:51pm As one of our old time posters used to say (cant remember who): "Get over yourself" |
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Title: Re: Clusters? Post by Linda_Howell on Aug 9th, 2006, 12:53pm Drummer |
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Title: Re: Clusters? Post by Margi on Aug 9th, 2006, 1:02pm psst, Luinda...is it time for a rousing rendition of Drummer's fight with the O2 tank? Damn, I miss that boy. |
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Title: Re: Clusters? Post by maffumatt on Aug 9th, 2006, 1:14pm Is a kip 4 a cluster? Is a kip 7 a cluster? Can you lie down with a kip 4? Clusters come with many levels of pain, not all attacks are head bangers. Just my opinion for what its worth. Matt |
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Title: Re: Clusters? Post by Sandy_C on Aug 9th, 2006, 1:44pm OK, she says, stepping out on the limb. I joined these boards in 1999, with my first ever head pain that was beyond anything I could have ever imagined. At that time my husband was unemployed, we had two children in college, and no insurance. I found this board by doing a google of "headaches". I took the quiz, and the majority of the answers pointed to CH, so I jumped in, registered on the boards, and started asking my questions. I had suffered, not often, but enough, with migranes for years, and what I was experiencing was NO migrane. Yet, because I would always pop my three Extra strength Excedrin, go to my dark bedroom, and lie down with my migranes, that is what I did with these headaches. I could lay down - I could not sleep, but I COULD lie down! There was a thread, just like this one, on the 99 boards, about being able to lay down with CH. When I said I could lay down, I was blown apart and labeled the disease of the month wannabe. I left the boards and did not return until last year, when I really needed the support, because now, I am diagnosed and my hits are much harder than they were in 1999. You see, the intensity of the hits during my cycles from 1999 through 2005 had escalated - dramatically. As I look back on it now, the hits during that very first cycle were probably no more than a K3, but to me, at that time, it was the worst pain I had ever felt. Now I know better. So, to all those who say that nobody with CH can lay down (not sleep) during a hit, I say to you, YES I CAN, at low level hits. I can lay on the couch, with ice packs around my head, while applying pressure to my right eye, and ride the hit out. But, I am lying down - not rocking, not pacing, not head banging. Higher level hits, not a chance. I'm dancing just like all of you. Maybe, rather than jumping down a newbies throat because they say they can lay down - you might want to consider - maybe that newbie just hasn't hit the high levels yet! Off limb now Sandy |
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Title: Re: Clusters? Post by chewy on Aug 9th, 2006, 1:50pm Quote:
No one did that. |
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Title: Re: Clusters? Post by serendipity on Aug 9th, 2006, 1:51pm Well, as I said before, I'm no newbie to this. I've been a sufferer for 17 years. I'm just fairly new here...sort of. Also, I can't always lie down...sometimes I just can't. But even when I do lie down, it's not my natural inclination. I'm fighting the urge to pace, rock and headbang just like everyone else. I've just found through many years of trial and error that what works best for ME is to not give in to those urges...although sometimes I can't help it, I'll admit. I appreciate your support, though. ;;D |
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Title: Re: Clusters? Post by Sandy_C on Aug 9th, 2006, 3:35pm Chewy, dear, I'm sorry. Maybe my term "jump down the throat" was a little too stong. But, when you read on page one of this thread where you and Bob state, flat out, that nobody with CH, during a hit, can sleep (which I agree) or lie down (do not necessarily agree), you are sending a message to newbies that there is one and only one absolute. You and I both know that there is no absolutes with CH. Some people can lie down, others can't, depends on the level of the hit, and the individuals level of pain tolerance. All I'm asking for is for all of us to not make "absolute" statements one way or the other, because everyone is different in their responses to pain, CH, and treatments. When someone says nobody can lie down with CH, that's an "absolute". It doesn't fit all of us. :-* :-* Sandy |
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Title: Re: Clusters? Post by chewy on Aug 9th, 2006, 3:54pm Quote:
The message being sent to newbies is that if you can sleep or lie down during a cluster attack then you may not have CH and you need to do some research to get the appropriate diagnosis and treatment. I still say that anyone inj the throws of a CH attack will not be sleeping OR lying down. |
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Title: Re: Clusters? Post by Margi on Aug 9th, 2006, 3:57pm I still agree, Don. I still think it's a red flag issue in diagnosis. It takes every ounce of strength and determination Mike has just to stay calm through an attack and, for him, that means sitting still long enough to strap on the O2 mask and rock in his chair. It's taken him years to learn how to calm down to that point. Making himself horizontal, or even at a 45° slant is enough to ramp the beast up all over again. It makes sense, really, if you think about it. Cluster has so much nasal involvement and, while under attack, so much worse. Becoming vertical is only going to compound that problem and add to the pressure already on pressurized sinuses. Ever seen a pressure cooker lid when it's about to blow? That's what would happen to Mike if he did anything less than vertical under attack. |
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Title: Re: Clusters? Post by seasonalboomer on Aug 9th, 2006, 4:21pm on 08/09/06 at 15:54:07, chewy wrote:
Can we agree if we reword it just a little so it is less throat invasive? "It is rare that someone who is suffering from a Cluster Headache can bear to lay down, let alone sleep. If you find that lying down is not a problem for you, or even the ability to fall to sleep during a Cluster Headache is possible, you may want to consider doing some additional research to re-evaluate your diagnosis and treatment." By the way, Chewy, you've been kind of grumpy lately..... ;) Scott |
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Title: Re: Clusters? Post by Sandy_C on Aug 9th, 2006, 4:25pm on 08/09/06 at 15:54:07, chewy wrote:
And I say, it depends upon the level of the attack. At what Kip level do you begin the dance? 1, 4, 5, 7, 10? Prior to hitting your personal "dance" level, what do you do? I lay down. When my level hits where that is no longer possible, I dance. At least, while I lay down, I have tried to conserve as much of my energy as possible before I have to do the dance. So, yes, I can lay down, to a certain level. So let's agree to disagree. Ok? Sandy |
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Title: Re: Clusters? Post by Margi on Aug 9th, 2006, 4:40pm Being the good little hairsplitter that I am...and I honestly AM just posting this as a discussion point, not an attack against anyone. I have to say that laying down in the early stages of a hit for Mike is a trigger for him and will cause him to ramp up way faster than if he is vertical. Again, the horizontal altitude stuffs him up more than he already is and makes everything worse REAL fast. We've sadly proven this theory repeatedly in our house when he's trying to find some sleep between hits. If he even lays down for five minutes, sometimes, it will trigger him. I know a lot of folks here say they sleep upright in a recliner chair for the better part of their cycle. The clusterheads I've talked to, their hits escalate quite quickly, as well, so they wouldn't have the luxury of laying there waiting it out. I was with Elaine on the golf course in Vancouver and I saw her get that deer in the headlights look about her and, sure enough, within 5 minutes she was off the course and in the full throes of an attack. Same thing with Linda - she came to visit us out camping and we'd just sat down to dinner. Same look (the OMG I hate this shit look) came over her and, within 5 minutes we were inside battling the beast. For the clusterheads I've witnessed getting hit in person, they just haven't had the time to lay down before the dance. |
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Title: Re: Clusters? Post by Margi on Aug 9th, 2006, 4:51pm Something I've got to add here, I just got email from a very close clusterhead friend who is watching this thread and is in agreement with the abundance of misdiagnoses out there. I believe the words were "won't it be tragic if someone has to die trying to prove a point". That really hit me and brings me back to my original point of being such a bulldog about misdiagnoses and treating something that isn't there. Triptans causes heart attacks. Verapamil lowers blood pressure which can cause strokes. Lithium can cause psychotic breaks. The alternative therapies mentioned here can also do that if administered incorrectly. Someone COULD literally die trying to prove they are a clusterhead. That's what keeps me motivated to be mouthy on this subject. |
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Title: Re: Clusters? Post by Cathi04 on Aug 9th, 2006, 5:22pm Tell me how someone can possibly get these meds without a Dr's script.......which comes with a DX, I might add(Unless one is foolish enough to order out-of-country meds). Oh, and, of course, there's never been a case of a misdiagnosis............ Cathi |
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Title: Re: Clusters? Post by BobG on Aug 9th, 2006, 5:57pm Here's my KIP....... 1. I can lay down but must remain very still. And pray it's just a slight shadow. 2. I'm sitting up straight as possible. Thinking of standing. 3. Standing. 4. Standing and starting to pace. looking for the ice pack. 5 and above. You all know the answer to that. Quote:
What about Viagra? It opens blook vessels, right? Does it open (expand) all vessels or just "special" ones. If it opens all of them, will it press on the trigeminal? Hey....don't snicker.........I'm getting old and have to think about the future. ;;D |
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Title: Re: Clusters? Post by alchemy on Aug 9th, 2006, 6:58pm I've been reading this post and have found it to be a great discussion, with a lot of info thrown in. I have to agre with Margi in the point of who would want to be a ch. Don't get me wrong I love you guys but I don't want to be here. My wife godbless her found this site for me a number of years ago but I didn't join till a little over a year ago. I didn't join for so long because I didn't want to face the fact that I do have ch. I've had two phone conversations with Rori and Linda, and the calls left me in tears because ch is a lonely world and for me to say something in a conversation and them to say I understand blew me away. I'm sorry I know I'm rambling but I think why would anyone want my life? I can't even fathom the thought of laying down let alone sittng down through a hit. I'm not saying it can't be done but I can't. I sit in a chair at night between hits cause laying down brings them on worse. I know this probably doesn't make sense but it's my 2cents jim |
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Title: Re: Clusters? Post by Jonny on Aug 9th, 2006, 7:30pm I thought we were talking about a CH HIT!!!! Not friggin Kip 2-3-4 shadows.....am I wrong here? A hit to me is a god damn hit...not discomfort....Christ!! If you can lay down with a Kip 8-9 or 10...please refrain from giving advice on this site because you clearly do not have CH. Thank you :-* |
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Title: Re: Clusters? Post by starlight on Aug 9th, 2006, 7:41pm Guys, here's a thought--I think more telling than anything is the "timeclock" nature of these headaches--not so much whether someone has managed to stay laying down with one. If a person is getting a headache behind one eye at a certain hour each day or night, I am going to put my money on clusters. If someone comes to me and says "you know what it's the weirdest thing, I am waking up every night or every other night or even Christ every third night with a terrible pain behind one of my eyes" I am going to say clusters. Even if they say I managed to lie down. The lying down vs. not lying down is simply not the most striking feature of these headaches. Or waking up with terrible pain behind eye at all at any hour I am going to bet clusters. I realize some people get sporadic hits as the norm for them or only get them during the day, but still ask them about the quality of the pain--it is a crescendo of pain--it works its way up and crescendoes. This is distinct to cluster. And if you feel it it is unmistakable. Noone knows what is going on inside someone's head unless you are in their head. |
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Title: Re: Clusters? Post by serendipity on Aug 9th, 2006, 7:44pm Quote:
Two neuros, three GPs and 17 years of research say you're wrong, Jonny. I truly feel for anyone who is so "possessive" of this syndrome that they shun others who deal with their pain differently than the average person. There's not one aspect of my headaches that deviates from your precious classic symptoms, other than the fact that I have LEARNED...yes, learned...because it sure as hell does not come easy...to lie down and get myself into a trancelike state. Don't think I haven't done the dance. I've done it plenty, and until about ten years ago I couldn't even imagine lying down and staying calm throughout a CH. But now I can. It's as simple as that. And I will continue to give advice where I feel that I might be of help to someone. Maybe at some point I can help someone else take control of their pain, too. Oh, and starlight...I agree with you about the timeframe issue. I think that waking up two or three times per night with a hot poker ramming you in your eye socket and forehead is a pretty good sign that you're having cluster headaches. |
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Title: Re: Clusters? Post by BB on Aug 9th, 2006, 7:46pm My DH is in day 12 of his cycle now and I have been by his side 24/7. He likes me to sit with him, help him hold the ice pack and help him keep the oxygen mask straight, so I have witnessed every single attacks he has had and yes there has been many, too many. What we have come to notice though that he has 2 types of attacks. One is the classical CH which starts either on the back of his head or behind his left ear, he tells me it starts out like someone using a hand drill on his skull and slowly drilling through. At this point he could stay relatively still, whether sitting or lying. Once the drill is through the skull into his brain, which takes only a min or two , it picks up the speed and the intensity very very quickly , especially if the shadow comes too, then it drills very fast through his brain into the back of his left eye, pushing it out and at the same time setting fire to his eye and the left side of his brain. By this stage he is on the floor, can not stand or sit , rolling and screaming through clenched teeth, sweating profusely. Thank God an Imgran ( Imitrex ) injection can stop it fairly quickly. The other type is a little bit slower. It starts out as if someone punches him really really hard on the left temple and on his left eye, making his eye all watery and blurry, then no drilling but the burning starts inside the brain and behind the left eye. The fire gets hotter and hotter together with a vice like grip that tightens around his head, as if someone trying to crack his skull open, all the while his left brain and left eye were burning. With this one he could lie down a little bit longer until the fire is hot enough and the vice grip tight enough for him to again starts rolling and cursing and hyperventilate. We discussed the two with our neurologist and were told that both are CH, it depends on the level of inflammation of the trigeminal nerves that which one he would be experiencing. My DH also have normal migraines and he gets some of them during the cycle too. With the normal migraines Imigran doesnt work quite as well for him, he needs some strong pain killers on top to control the pain, but with those migraines, he could lie rather still and when the pain eases can actually fall asleep. I agree though that with a CH , when one gets to Kip7,8 its pretty much impossible to lie still. One maybe horizontal and rolling, writhing on the floor, but to lie still, I cant see how thats possible? Its just our experience with CH and my humble opinion. Just wanna share. Annette |
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Title: Re: Clusters? Post by starlight on Aug 9th, 2006, 7:52pm Chewy, People with low level clusters can lie down. As I said in my post I was able to do so as a teen of high school age. I also needed to be in darkness. I also would oftentimes throw up (sorry to be gross). Also when in the nurse's office of a high school there is not much opportunity to moan and writhe. I was lucky as a teen that I could do that cause it didn't last long (the ability to lie down). Also, I think that the head of the headache clinic that I go to does know quite a bit about clusters, and when he says that the pain levels increase each cycle I think he knows his stuff. He is head of what is regarded as the 2nd best headache clinic in the USA. I think he has interviewed many cluster sufferers. I mention this b.c what if a teen or young person comes here who can lie down during a cluster and people pounce on them???? The thought of that does not make me feel very happy. |
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Title: Re: Clusters? Post by Jonny on Aug 9th, 2006, 7:55pm Ok, I only have one question, ok? Who here can lay still on a bed when being hit with a Kip 10? Anyone? |
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Title: Re: Clusters? Post by E-Double on Aug 9th, 2006, 7:56pm you can not just go by time.....there are hypnic ha that wake ya up too. keep searching kids :-* |
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Title: Re: Clusters? Post by Jonny on Aug 9th, 2006, 7:59pm on 08/09/06 at 19:52:45, starlight wrote:
Does he have CH? No?....then I guess he does not know what goes on in a CH head does he? BTW: the pain does not increase with each cycle in all cases, so he must not know his ass from his elbow......LOL |
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Title: Re: Clusters? Post by starlight on Aug 9th, 2006, 7:59pm Johnny, When some people first start out getting clusters they do not have 9 and 10 levels of pain. The levels of pain that I got as a 14 yr. old was like a rabid dog attacking. The levels of pain I get now at age 32 yr. old is like Satan attacking. This disorder is not only about reaching a stage in your headaches where the pain is excruciating. It is also about very painful headaches that oftentimes lead people into a very tortured realm of sleep deprivation regardless if they are level 6, 7, 8, 9 ,10. it is just my two cents. This disorder does change from cycle to cycle. Sometimes it may be a vague change between one cycle and another, but after eighteen years I can tell you that it is progressive. |
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Title: Re: Clusters? Post by starlight on Aug 9th, 2006, 8:06pm Johnny, How long have you had the headaches? Secondly, if you notice I am not defensive at all. My headaches have reached to stage of level 10 on average when non-medicated. I would love to go back to the point where they were not. I am sure that some people do start off at level 10 headaches--I was not saying that at all. Maybe my doc when he said to me that my headache history was typical of clusters--maybe when people start as teens there is a distinct period of increasing pain with--he did not say that specifically (anything about teenagers)--he only said increasing pain with each cycle. But maybe being a teenager had something to do with it. I don't know--all I am saying is not everyone with clusters knows everything about clusters. I used to think that people who claimed to have teeth pain must simply not have clusters--how could they I knew what a cluster was and I didn't get any teeth pain--well ha ha the jokes on me cause now I do!!!! After 18 years now I have teeth pain also. So I guess those people who have teeth/jaw pain really do have headaches after all!!!! PS. He is a good doc. Believe me--I hate doctors and would never praise on who didn't deserve it. |
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Title: Re: Clusters? Post by Jonny on Aug 9th, 2006, 8:07pm on 08/09/06 at 19:52:45, starlight wrote:
on 08/09/06 at 19:59:38, starlight wrote:
Thats a big difference in your statements....which is it? I love how you spin your posts.....LMMFAO ;;D |
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Title: Re: Clusters? Post by starlight on Aug 9th, 2006, 8:23pm That's a spin??? A vague change between two cycles is what I said--so let's say the first cycle the pain is at one level and the next cycle it is slightly higher. Fast forward a number of cycles--say ten cycles--you are now at a much increased level of pain. This is definitely what happened to me during my cycles although I will say that upon hitting age 20 the pain increased quite drastically. Also upon hitting mid-twenties the pain increased again quite drastically. So there is no spin here. I am not sure--I guess I am being accused of lying? I am not sure how to react to that. I certainly won't "defend" myself. Perhaps I could only invite you to use some kind of Star Trek like technology to enter my brain/head for a night. Never once in any of my posts did I try to minimize the pain of clusters. Thereby insulting any sufferers. If anything I think that I have pointed out that I myself experience level 10s and even higher. My only point was let's not pounce on a person who is not experiencing excruciating pain with their clusters. Maybe this place is a lifeline for someone. You know what I mean? |
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Title: Re: Clusters? Post by starlight on Aug 9th, 2006, 8:26pm Johnny, Let me ask you a question just out of curiousity? How long have you had the clusters? Did they start out at a level 10? I am just curious to know. I feel I have been very open. |
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Title: Re: Clusters? Post by Jonny on Aug 9th, 2006, 8:36pm on 08/09/06 at 20:23:49, starlight wrote:
No!......stop spinning.....this is what you first said. on 08/09/06 at 19:52:45, starlight wrote:
That enough to scare the fuck out of any newbie that shows up here in their first cycle....and its BS info!! I guess what happens to you is worthy of telling all the newbies thats what is going to happen to them? Me?......12 years old and chronic out of the gate, I am now 44 years old and going by the post counts.....you should read awhile before you start scaring the fuck out of newbies. |
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Title: Re: Clusters? Post by MJ on Aug 9th, 2006, 8:51pm My turn. Can a person lie down? Yes even at the extremes. It depends on your mindset. 30 some years ago I would lie down simply because I thought I would die if I didnt, I would literally convulse on the bed or floor though while trying to keep still. Then I discovered that it was ok to get up and now I would be tempted to say that one cant lay down either let alone sit and rock. I sure as hell dont even consider it today. I must be up and moving or I just may die, maybe. Is CH progressive?? Not for me. From day one it has been the same. 8-12 hits a day and never below a level 10 untill the RC seeds. Think about this though when getting hit driving or in someplace where you just cant move what do you do? generally you will try to grin wait it out and bear it however you can. It may require all your powers but we all do it somehow from time to time. |
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Title: Re: Clusters? Post by starlight on Aug 9th, 2006, 8:54pm Johnny-- Whatever. What is the difference between me pointing out that these headaches can be progressive--start out at a lower level of pain and progress to higher levels--and you or anyone else insisting that a "hit" is necessarily excruciating? Reading on these boards there is plenty to scare a person. People talking about banging their heads, the agony of it all, and then insisting that any TRUE cluster head would be experiencing this horrible pain whether it is their first time or not...how is that more comforting? It is the same thing. I am saying some people may start out at lower levels and experience increasing pain levels with each cycle. You are saying no, a true cluster starts out with level 10 pain. What I am saying is that some people may go many many years without hitting that level of pain--during that time they can find treatment, they can find some way to manage these headaches. That way they will not have to just "coast" their way to level 10. Plus, all I am doing is giving some facts. Pleasant or not. Since that was the context of this whole discussion--and I am paraphrasing "these are the facts--a true clusterhead could not lie down--they need to bang their head, rock, moan, etc". I was trying to also "give some facts". Anyway, it is obvious that this is some kind of "boy's club" (although I realize there are women here). Everybody's got to present themselves in a certain way. That's bullshit. |
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Title: Re: Clusters? Post by Jonny on Aug 9th, 2006, 8:59pm WDGCH....translate......Women dont get cluster headaches! :-* |
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Title: Re: Clusters? Post by starlight on Aug 9th, 2006, 9:06pm Wow you're a jerk. Take care, hope you get pain free soon, Johnny. I'm out. |
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Title: Re: Clusters? Post by Jonny on Aug 9th, 2006, 9:10pm on 08/09/06 at 21:06:37, starlight wrote:
Im sorry, seeing that you never cared to put what sex you were in your profile I had no idea I was offending you. BTW: Women dont get cluster headaches.....LOL |
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Title: Re: Clusters? Post by starlight on Aug 9th, 2006, 9:18pm Hey wise guy, My experience with clusters is one of victory not tragedy--I finally have them under control after 18 years. So I really don't give a good goddamn what kind of hostility you have to throw around. Cause I'm not taking it. My advice to you--quite pouncing on people cause you're not an expert. You're making a joke out of this whole place. So go ahead and send you're final "stab" at me--as I said I've beat these headaches so if the discussion here is just going to give me another one I'll have to say no thanks. Peace. I'm out. PS. You know many guys who would pick a screen name like Starlight? I hope not. |
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Title: Re: Clusters? Post by georgej on Aug 9th, 2006, 9:20pm Okay. I'm not a doctor, and I'm certainly not a certified CH expert. So I'll have to be anecdotal, here. Can someone lie down with a Kip 10? Don't know. I sure can't. I can't lie down with a hit of any level--maybe a middling shadow, but that's it. But again, I don't know. I've never seen another person take a hit--other than the video of Chuck. (Profoundly disturbed, but also inspired by Chuck's courage.) It is possible, however, to calm yourself, sit, and react to a CH at an 8 or below with some measure of self-control--and reduce your perception of pain, if not the pain itself. It can be learned. It's hard as hell, but it can be done. That I know to be true. And it's worth it. I'm not going to get into nattering on about how long I've had CH and/or do I really have CH (I do)--but I've had episodic CH for a long time. I didn't learn to control my reactions to a hit overnight. It really is hard. I can't say how far others have managed to go along that path. I'd be interested to hear about it, though. Regards to all, George |
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Title: Re: Clusters? Post by Jonny on Aug 9th, 2006, 9:32pm on 08/09/06 at 21:18:45, starlight wrote:
I never claimed to be an expert on anything, just someone that says you need to think what you post....thats my opinion. A joke?......I dont think I would be KING of this website if I was making it a joke ;) Please refer to your post count and mine.....thank you :-* |
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Title: Re: Clusters? Post by serendipity on Aug 9th, 2006, 9:38pm on 08/09/06 at 19:55:25, Jonny wrote:
OK, I will admit that I can't. But believe me when I tell you that I'm going to get to the point where I can, one of these days. I'm determined to completely own these bastards. |
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Title: Re: Clusters? Post by MJ on Aug 9th, 2006, 9:43pm on 08/09/06 at 21:18:45, starlight wrote:
Thats what we all like to hear. PS: dont let twinkle toes Jonny get your gander up so easily, ;;D He's just jonny, likes to do it, and a helluva support force to many. |
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Title: Re: Clusters? Post by Jonny on Aug 9th, 2006, 9:43pm on 08/09/06 at 21:38:03, serendipity wrote:
I wish you luck, 32 years and I havent been able to do it Good luck. |
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Title: Re: Clusters? Post by chewy on Aug 9th, 2006, 9:50pm Quote:
Classic migraine symptoms. Quote:
If that were true then after 30 years I should be hitting around a KIP 135 each cycle. I dont think your Doc knows a damn thing about CH. Jonny you luck out. According to Starlight and Serendipidy with Quote:
SinusBuster is on sale this week. Quote:
No your not. |
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Title: Hi! Post by starlight on Aug 9th, 2006, 11:28pm Chewy, buddy, thanks-- You've just dispelled 18 years of illusion for me as well as the diagnoses of 3 neuros and one head of a headache clinic. Thanks for giving me migraines instead of clusters. Next time I want support, I'll sign on here under a different screen name and start doing the Ernest Hemmingway tough guy thing and stick to all of the "classic" symptoms ( no noone throws up with clusters--CHECK AGAIN) cause I didn't realize you and Johnny possess such elite knowledge of every idiosyncracy of clusters. And also I didn't realize you two had solved a medical mystery (but I wouldn't doubt you have considering you comprehensive knowledge). So anyway guys, have a drink for me and have fun at the bullfights. oh actually, silly me, I forgot I can run out and grab a bottle of wine and swill it right down now that I know I don't have clusters!!!! Gee I feel gidddy!!! |
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Title: Re: Clusters? Post by starlight on Aug 9th, 2006, 11:36pm PS Both of you go ahead and take your crap out on me--I'd rather it be me who knows damn well what I have than some poor kid looking for help. So if either of you are such good support systems as someone on this board claims than start acting like it. First step would be some humility. Good night pain free to all. |
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Title: Re: Clusters? Post by BobG on Aug 9th, 2006, 11:37pm on 08/09/06 at 20:23:49, starlight wrote:
Hey starlight, please re-read the KIP scale. There is no going above a Kip 10 and living. A Kip 10 is the worst pain you have ever felt. If you have a Kip 10 today and then tomorrow your pain is greater, that new level is your Kip 10. LMAO! [smiley=laugh.gif] twinkle toes...........good one MJ. ;;D [smiley=laugh.gif] |
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Title: Re: Clusters? Post by starlight on Aug 9th, 2006, 11:46pm Bob, Sorry for misinterpreting the KIP scale. That is truly a hoot that I did that!!! OK, now all three of you repeat after me "I don't know everything...I don't know everything", click your heels 3 times and go back to Kansas. |
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Title: Re: Clusters? Post by unsolved1 on Aug 9th, 2006, 11:48pm The 100th reply to this thread. WOW :o It took off, didn't it ! No, I can never, EVER, lie down with an attack. I can tell within the first few minutes weather it's an 'attack' or a shadow. If it's just a shadow ... I'm thanking god and may seek to lie down. If it's an 'attack' ... It's like an air raid siren just went off and I'm off to seek shelter quickly. I prefer to be at home so I can grab a clean towel and head for the bathroom. Once in the bathroom, I inject 3mg of Imitrex (SubQ), wet the towel and press it on my face, turn off the light, and start the moaning, groaning, rocking, talking to god, and sometimes even cry. Lying down and/or sleeping is something I wish I could do ... but it's impossible for me to do. I have a better chance of panicing & hyperventilating (or heading to the ER) than I do of lying down or sleeping. Any doc who says that CH is a progressive disease, doesn't know what they're talking about. Sure it might get worse, but an attack is an attack. My KIP 9's and 10's way back when, still feel just as bad now. I could never learn to cope with a 9 or a 10 by lying down. There's no way I could 'build up my tolerance' and lie down or sleep it off. To me, that just sounds impossible to do ... know matter how many years you've been dealing with it. UNsolved BTW, for almost 15 years, I thought I was the only person who had this kind of pain. It's unreal pain. I knew long ago that this is no regular headache. |
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Title: Re: Clusters? Post by nani on Aug 10th, 2006, 12:17am I really wanted to stay out of this mess... but I can't. First, for clarification: Quote:
So, am I to understand that everyone who is sure they have CH here always has a k7 and above? Seems to me, kip stopped calling them shadows at k3. Me? I can lie down up to a k6. Not sleep, but lie down. With my ice bag scrunched quite nicely into my eye and temple at the same time. I believe, and Dr Rosen has talked about it some, that a lot of us suffer from variations in the TAC headaches. My guess is that 90% of the known sufferers here will get an occasional "not classic CH" symptom. Like an icepick pain, or a very short hit, etc. It isn't that unusual for some of us to have those kinds of variations a lot. The only time my CH presented classicly was during my very first episode (33 years ago). Since then it presents atypically. That doesn't mean I don't have CH. It just reaffirms the reality that there really are few, if any, absolutes. Part of the reason why it's so misunderstood by doctors. On the other hand, treating something else with meds for CH could be dangerous. Of course, there is only one real CH med right now. And it works on more than one type of headache. Are there people out there with incorrect diagnosis'? Probably. Is there a group of "wannabes" here? I highly doubt it. It's time to get back to what this place is about. We're here to offer what we know, what we've learned, and support. It's not about being right...it's supposed to be about being there (when someone needs it). |
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Title: Re: Clusters? Post by Linda_Howell on Aug 10th, 2006, 1:15am Quote:
Hmmmm. Speaking of Kansas. In case you didn't know Starlight, and other newbieson this thread, there is this wonderful guy named DJ who started this site back in 1998. Just about the time I found it. He lives in Whichita, Kansas. He pays for all this bandwidth out of his own pocket and has done so for 8 years now. There is paypal down at the bottom of this page which a lot of us contribute to, so we can all have access to information, debates, support and differing viewpoints. |
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Title: Re: Clusters? Post by Linda_Howell on Aug 10th, 2006, 1:24am Margi, I couldn't find Drummers "Mr.Winky" story, but I found this. ;;D Quote:
Linda |
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Title: Re: Clusters? Post by chewy on Aug 10th, 2006, 5:20am Quote:
Headache clinic. Which one? Quote:
First step is research your own illness. |
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Title: Re: Clusters? Post by serendipity on Aug 10th, 2006, 7:10am unsolved, sorry to take this friendly discussion off-track, but I have to ask...why don't you use O2? Doesn't it work for you? P.S. Linda, that's a great story, and who hasn't wanted to say that to someone at some point? I know I have. |
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Title: Re: Clusters? Post by chewy on Aug 10th, 2006, 7:34am Heres another good story Quote:
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Title: Re: Clusters? Post by unsolved1 on Aug 10th, 2006, 8:53am on 08/10/06 at 07:10:32, serendipity wrote:
Unfortunately, I am one of the few that does not benefit from O2. I've tried it several times at home and in the hospitals and it's never helped. I kill my attacks with a 3mg injection of Imitrex. PF Wishes UNsolved |
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Title: Re: Clusters? Post by starlight on Aug 10th, 2006, 9:45am Chewy-- Whatever man. Someone needs to put a disclaimer up at the beginning of the sight telling "newbies" not to bother posting till they've been cleared by you and Johnny. Yeah, I have researched my illness, quite a bit, but i guess that doesn't matter in the light of your unfailing wisdom. And geez, everybody, cancel your neurology appointments--we got Chewy and Johnny in the house. Yeah, you know i have nothing better to do than make this shit up. Please. I would say that anybody who truly has this disorder would inherently have compassion for others (especially if they have been diagnosed by 4 different people--but oops I forgot we have to clear it with you burly tough guys first). And since you have no real compassion, I think maybe you and Chewy are the liars. Linda, I deeply apologize to the owner of this sight for my reference to Dorothy and Kansas as I did not know that he comes from Kansas. And if he is paying for this whole thing out of his own pocket, maybe he should check out what kind of bullshit is going on on his project. And I didn't know I had to pay to be on here or that if I don't pay it gives me a lower status. Thanks for letting me know. |
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Title: Re: Clusters? Post by starlight on Aug 10th, 2006, 9:50am And one more thing--I've met some really nice people on here. It's a great idea. But the people who think they are really "somethin' somethin'"--sitting there quoting two lines of text and then making sarcastic remarks really turn my stomach. I think I'd rather have an untreated cluster cycle than deal with that kind of "snobbery". And honestly I don't believe that the people doing that really have clusters. This disorder pounds compassion into you. And if you don't have any, sorry I something is not right there, I'm not buying it. |
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Title: Re: Clusters? Post by pattik on Aug 10th, 2006, 9:54am on 08/10/06 at 09:50:12, starlight wrote:
Anyone else getting a dejevu here? 8) |
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Title: Re: Clusters? Post by starlight on Aug 10th, 2006, 9:58am Oh, and Chewy--I'm not telling you which one. Remember, you have Johnny. Like, why would I tell you about a reputable headache clinic? |
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Title: Re: Clusters? Post by starlight on Aug 10th, 2006, 10:00am Pattik-- If you're getting a deja vu maybe it's because someone else had the balls to tell the pricks on here to go stick it. |
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Title: Re: Clusters? Post by Kevin_M on Aug 10th, 2006, 10:42am on 08/10/06 at 09:50:12, starlight wrote:
Hard to say this is insightful. Quote:
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Title: Re: Clusters? Post by Margi on Aug 10th, 2006, 10:58am Holy :o I take a night off from the internet and all hell breaks loose in this thread. Starlight, I'll thank you not to be calling Jonny and Chewy liars, ok? >:( Chewy happens to be an ex-president of OUCH and Jonny has helped thousands here, spent thousands of dollars supplying O2 regulators to his friends, his support is tireless in this community. Jonny, in my books IS an expert on clusters - way more than any non-clusterhead neurologist could ever be. We DO have many cluster experts here, simply because we live with the affliction and we continue to study it just from a point of self-survival if nothing else. Myself, I have witnessed in excess of 1,000 cluster attacks. I'd be doing cartwheels if I could say I'd never seen one, OK? Because I hate it. I truly hate this pain and I wish it didn't exist. However, because of the forced experience I've gained, I can now recognize the visual signs of an impending attack and most real-life supporters can, even when a sufferer can not. Nice thing to put on a resume, huh? NOT. :( I think that kind of stuff does make us experts on this subject. In fact, in that light, you could say that a neurologist is akin to an unmarried marriage counsellor if they've never seen an attack. Book smart is one thing, street smart is a horse of a different colour. If you are lying down in a dark room, throwing up - honey, that's most probably NOT cluster. Don (Chewy) is right - that IS classic migraine. Why do you WANT to have cluster? Migraine is a hell all its own, it can be completely debilitating for days on end. It CAN come on like clockwork, and it CAN wake you from a sound sleep. Those are not cluster qualifiers alone. To me, cluster qualifiers are as follows: 1. Difference in pupil sizes. 2. Location of pain centered around one eye and cheek. 3. Body thermostat out of whack during a hit, extreme heat then deep chill. 4. Duration of pain (usually not longer than an hour or so). 5. Rapid onset and rapid decrease of pain. 6. Extreme agitation during an attack....it IS possible to stay calm but it does take a lot of concentration and years of practice to achieve this. The NORM is the opposite. 7. Increased heart rate, increased blood pressure during attack. 8. Repeated attacks through the day with total pain freedom in between them. To me, that's the cluster definition. I'm not a doctor, but I have been living with cluster headaches in my house for the last 20 years. The first time I saw Mike have a cluster, I thought he was having an aneurysm. I knew right away this was no migraine and it scared the hell out of me. I had been a migrainer at that point for 15 years, I was 26 at the time, so I initimately knew head pain, ok? This was nothing like I'd ever seen before. And then...it was gone. Again, nothing I'd ever seen before. I'm sorry you're in pain, Starlight, I honestly am. Head pain of any kind sucks. But I will fight forever for a correct diagnosis of any and all head pain. How else can you find relief? If you had epilepsy, why would you want to be treated for cancer? Finally, I have to comment on this.... on 08/09/06 at 17:22:38, Cathi04 wrote:
Cathi, I'm not sure what your point was here but....this IS my point. Folks ARE going to their doctors after reading about cluster headaches and rattling off the symptoms they read about here and the from the other sites we all have. In fact, I've just taught someone how to "be" a clusterhead right here in this post. You can't see head pain, a doctor can only diagnose from what the patient tells them. If they can spew out all the classic signs of cluster, a doctor IS going to give them these meds. Why wouldn't they? There is no confirming test for cluster. So they go off on their merry way, wearing the badge of a newly diagnosed clusterhead, with a pocketful of meds that could take their lives. All because they want to be able to belong to an internet message board? I just don't get that. Why anyone would want to be around cluster headaches if they don't have to is completely beyond me. I wish I didn't have to have the experience I have, I really do. I wish the love of my life had never felt this pain and I wish he could to question his diagnosis. More to the point, though, I really wish more people would. |
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Title: Re: Clusters? Post by kevinpix on Aug 10th, 2006, 11:02am I'm with starlight on this one. |
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Title: Re: Clusters? Post by serendipity on Aug 10th, 2006, 11:07am Quote:
Well, I mean...she's right. What's the point of throwing in a snide remark about the PayPal link? How is that helpful or pertinent? It was just a smart-assed comment having absolutely nothing to do with the discussion at hand and said with the intent of making anyone who hasn't donated money feel like they're less worthy of being here. I know there are a lot of really nice, caring people here. I started lurking here (under a different name) about six years ago, and I've read around these boards enough over the last two or three years to know that there's an awful lot of compassion and a plethora of very helpful information around here. starlight, don't let one bad apple spoil the whole bunch for you, and every time you feel the urge to respond to one of chewy's asinine comments, just think of it this way...who's the bigger fool: the fool himself or the one who argues with him? ;) *DISCLAIMER* This post not directed at Jonny. |
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Title: Re: Clusters? Post by pattik on Aug 10th, 2006, 11:15am on 08/10/06 at 11:07:40, serendipity wrote:
It wasn't snide...between you and starlight, I have counted over 30 posts on this thread alone. You must be going for some kind of a record. Quote:
Like I said....de jevu |
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Title: Re: Clusters? Post by Margi on Aug 10th, 2006, 11:19am on 08/10/06 at 11:07:40, serendipity wrote:
uh, if no one did hit that button, Serendipty - YOU wouldn't be able to post on this message board, ok? on 08/10/06 at 11:07:40, serendipity wrote:
So who were you? Why change your name? on 08/10/06 at 11:07:40, serendipity wrote:
Serendipity, I have to ask you.....why is it so important that a potential misdiagnosis be supported? Because you don't want someone's feelings hurt? Because you want to defend their right to post to an internet message board? Wouldn't you be more of a friend to her if you directed her to get the correct diagnosis and the correct meds that would relieve her pain? Isn't that the more humane thing to do? And as to YOUR snide remarks calling Chewy "asinine"...well, you know, that's one of things we love about him. Him and his 'as'. |
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Title: Re: Clusters? Post by serendipity on Aug 10th, 2006, 11:20am on 08/10/06 at 11:15:49, pattik wrote:
Wh...what? You can't be serious. That comment was not the least bit pertinent to any conversation going on here. As for how many posts between starlight and me, who gives a shit? There's a discussion going on here that involves the two of us. Why it's such a mystery to you that we have a lot of posts in this thread is beyond me. Quote:
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Title: Re: Clusters? Post by serendipity on Aug 10th, 2006, 11:28am Quote:
Quote:
Quote:
He may have a lovely "as," but right now he's just acting like one. |
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Title: Re: Clusters? Post by E-Double on Aug 10th, 2006, 11:33am You all probably ran off Hank who was just seeking some guidance one way or another. [smiley=nono.gif] |
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Title: Re: Clusters? Post by serendipity on Aug 10th, 2006, 11:39am That's the most sensible thing anyone has said in this thread so far, and now I feel like crap. I'm out of this thread. It's mentally draining and it's no coincidence that every time I go into it I start having shadows. Have fun arguing, guys. I'm going to focus on the postives around here and forget this whole discussion ever happened. Sorry for ruining your thread, Hank. I mean that. |
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Title: Re: Clusters? Post by alchemy on Aug 10th, 2006, 11:40am Margi I'm in total agreement with you and I'm also writing in defense of chewy and jonny. I was diagnosed with ch long before my wife found this board. A very compassionate doc told of this site. The time I spent before coming here was bouncing from specialist to specialist who could all diagnose but not treat. I was living on viacodin and going downhill fast. The information I found here has been invaluable. I've printed out info from here and taken it to my nueros who use it to help treat ch. Before I got this help I was hospitalised for a very serious suicide attempt. This was a result of the constant pain and depression. I came here to this board and encountered nothing but compassion. The understanding by people here including chewy and jonny have helped more than they will ever know. I don't want ch, who in there right mind would. Head pain of any kind sucks. If you find support here great. Maybe you can support others here to. Thats what this board is for. Lets all stop the jumping on people and get back to helping people. sorry for the long post. jim |
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Title: Re: Clusters? Post by Margi on Aug 10th, 2006, 11:41am E, this was Hank's second post earlier in this thread. I think it kind of got buried in the dogpile here though, you're absolutely right. I'm just as guilty as the next one but I do still think some good points were made in this thread......Hopefully, Hank's still out there digging.....? "First off, I want to say thanks to everyone for being so incredibly responsive and forthcoming with information. My intent was to get some feedback as I had never heard of clusters prior to finding this website as I was hunting around to find symptoms that matched mine. As per my first post, I have been able to kill the pain every time (so far) with Excedrin (have 4 in my pocket right now) so I don't know if what I am having are actually cluster headaches though the location of the pain seems to deem them as such. I have my doubts now after reading your posts as the intensity doesn't seem to match what you all have discussed (maybe it would if I didn't eat the excedrin, but I can't really see taking that leap just to find out). Regarding pain tolerance, I have none, so it doesn't seem to me that I can withstand something that all of you seem to be crushed by when it hits. Like I said, I am not out to self diagnose, just get some information. I would like to say, however, that all of you are fantastically strong people to have been able to deal with this long term...I can only hope that that won't be the case for me....scared s-less at this point!" |
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Title: Re: Clusters? Post by sandie99 on Aug 10th, 2006, 11:47am on 08/09/06 at 19:55:25, Jonny wrote:
Not a chance. Impossible for me. |
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Title: Re: Clusters? Post by starlight on Aug 10th, 2006, 11:50am Guys--not to here to argue--haven't read any comments--just wanted to post this link, found it to be interesting http://64.233.161.104/search?q=cache:qOadEZhCGAKJ:www.headachedrugs.com/pdf/cluster.pdf Article mentions specifically nauseau associated with clusters. Also mentions that these attacks can increase in frequency AS WELL AS DECREASE. Also mentions that many who have had clusters for a long period of time often "lose" them in their late 30s or 40s. Hopefully that may be interesting or even provide some hope to someone. Peace. |
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Title: Re: Clusters? Post by chewy on Aug 10th, 2006, 11:54am Serendipidy---Starlight ----Kevinpix--------Cardogman. Quote:
If its such a reputable place why wouldn't you tell everyone ? |
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Title: Re: Clusters? Post by starlight on Aug 10th, 2006, 11:57am Guys, sorry I just tested that link and i don't think it is working don't know why. If you'd like to read the article, just google: Introduction to Cluster Headache and Cluster Headache Abortive Medication |
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Title: Re: Clusters? Post by Margi on Aug 10th, 2006, 12:02pm yeah, there's a bunch of other crap in that article too. here's just one example: "The cluster occasionally lasts as little as several days or as long as 5 months, at which time we begin to think they may have converted to the chronic cluster type." ::) "...avoiding aged cheeses and meats, and chocolate is prudent during the cluster series." To me, that totally discounts the whole article. Doesn't even say where this is from, no source. This could have been written by anyone. Usually the only time we hear of vomiting is because of a side effect of meds. here's the correct link to the article in question: http://www.headachedrugs.com/pdf/cluster.pdf |
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Title: Re: Clusters? Post by Kevin_M on Aug 10th, 2006, 12:05pm on 08/08/06 at 19:24:48, hank1212us wrote:
His entire post seemed an appeased conclusion. |
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Title: Re: Clusters? Post by nani on Aug 10th, 2006, 12:05pm I vomit anytime I'm in extreme pain. CHs over k8, burst brain aneurysms, burst ovarian cysts... given the wrong circumstances, it can be a real puke fest at my house. :-/ Oh, and the headachedrugs.com site is Dr Robbins' |
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Title: Re: Clusters? Post by starlight on Aug 10th, 2006, 12:07pm Margi, Not here to fight. But let me assure you that I do have clusters. I was up last night three times sucking in oxygen. Enough said. When I throw up with these things--it is like this--at a certain point I get nauseaus and throwing up just seems like a natural thing to do. I had a full-blown the other night (away from home in the evening at a friend's house) and did not throw up. I rocked back and forth, put ice on my head, sword like a pirate and when it finally went away decided I would like to lift my head up so asked my friend to please go in the other room and get me a tissue--yeah there was yucky stuff hanging down from left side of my nose about all the way down to my knees. Well, anyway. Noone needs to call anyone a liar. So I apologize for calling anyone a liar. I would, at some point, appreciate the same courteousy extended to me but I won't wait around for it. Gotta go. I'll post any information I feel can be helpful but that's about all. Pain free to everyone. |
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Title: Re: Clusters? Post by MJ on Aug 10th, 2006, 12:12pm on 08/10/06 at 12:02:16, Margi wrote:
Margi is this an issue. I dont think vomiting is uncommon among those in extreme pain. |
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Title: Re: Clusters? Post by E-Double on Aug 10th, 2006, 12:12pm [smiley=thumb.gif] Glad he got information that may have been helpful. Iused to puke from the anxiety associated from extremem pain. Once the anxiety subsided and the understanding and coping increased, the vomiting did not occur anymore. Oh yeah.the article is way off base |
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Title: Re: Clusters? Post by starlight on Aug 10th, 2006, 12:19pm Ok guys, I give up. Sorry the article mentioned some outdated bit about food triggers. Does that discount everything the article says? I don't think so. And just in general, I don't understand how any ONE person--you me or anyone else can possible know all of the idiosyncracies/traits/histories associated with cluster. This conversation is becoming fanatical--it is like a person says one thing--"um one time when I had a cluster I felt kind of dizzy" and a band of angry townspeople jumps on him/her "No, no, no,no, you don't have them!!!!!!!!!!" Guys, anyway, chill. Just chill. It's all good. |
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Title: Re: Clusters? Post by chewy on Aug 10th, 2006, 12:22pm Quote:
Really? Still waiting on the name of the reputable headache clinic |
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Title: Re: Clusters? Post by Margi on Aug 10th, 2006, 12:25pm ok, let me back up for a minute here...I'm not saying the puke thing is a deal breaker here. Nani I do know of two other clusterheads who hurl sometimes too. I'm just saying it's not all that common unless it's med- induced but that it's FAR more common in migraines. (The higher instance in migraine really was my point.) edited to add: now the laying down in the dark thing...well that IS a red flag. way more of a red flag than praying to the white porcelain god. |
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Title: Re: Clusters? Post by E-Double on Aug 10th, 2006, 12:27pm http://216.25.100.131/upload/CT_Clas/481,40,3.1 Cluster headache http://www.i-h-s.org/ |
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Title: Re: Clusters? Post by starlight on Aug 10th, 2006, 12:28pm one more bit of hope: my previous cycle as well as this cycle skipped TWO years between them. That is a big change from having them every year without fail for years and years. I can foresee growing out of them. or at least developing longer remission periods. I am not saying that is applicable to all--although I hope that it could be--but perhaps a new person reading that can find some reason to be hopeful. |
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Title: Re: Clusters? Post by MJ on Aug 10th, 2006, 12:40pm Thank goodness for all the participants on this board. Chewy if you and I were the only ones here for support they would definately have to rename these things suicide headaches. ;;D ;;D |
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Title: Re: Clusters? Post by chewy on Aug 10th, 2006, 1:28pm You can speak for yourself on that one. My track record of support stands on its own. |
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Title: Re: Clusters? Post by starlight on Aug 10th, 2006, 2:06pm Guys--couldn't resist posting this link. It compares cluster headache in women versus men--apparently women with clusters have more migrainous symptoms: http://jnnp.bmjjournals.com/cgi/content/full/70/5/613 |
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Title: Re: Clusters? Post by starlight on Aug 10th, 2006, 2:09pm And please note, also, if you will, the part where it mentions a possible need for cluster headache criteria reevaluation. Hope this is helpful. |
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Title: Re: Clusters? Post by kcopelin on Aug 10th, 2006, 2:22pm Good link, thanks.... kathy |
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Title: Re: Clusters? Post by rickyshot on Aug 10th, 2006, 2:57pm My Gawd This is turning into a melee. Have to agree with Sandy C, Margi, Anita and Chewy if I can with few sidelines. My own experiences and I suffer both complicated migraines and CH. One of the lucky ones. But I digress. Laying down still, throwing up , hours to days and weeks=migraine. Laying down at a shadow kip 1, 2 and possibly3 but not still definitely being woke up, totally different type of pain sometimes radiating to the teeth and jaw with sinus like symptoms congestion and tearing, boring in the eye or all of the above coming each day around the same time any level above a 3 and NO fuckin way laying down. Throwing oneself on the bed and writhing does not count as laying down cluster headache. The list margi put out along with temperature changes and BP changes going from 0-60 in seconds have been the course for me in the past with CH. . Being episodic I find each episode different but always hell, always wanting to die. The only difference Margi is your last point. Between hits totally PF. I find being episodic that between hits I feel generally crappy and not right at all and even shadowing. But a hit is very distinct and the pain of it even the low level ones amazing. I wonder if during cycle the CH sets off my migraines thus making me feel crappy between hits. |
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Title: Re: Clusters? Post by JeffB on Aug 10th, 2006, 4:02pm I couldn't lay down if I had a fucking gun to my head, excuse me, when I had a fucking gun to my head. I could slam my head in the wall, I could fall to my knees, I could cowar in the fetal position but never lay there and ride one out. I think IMO that anyone who could is having a migraine or just a bad day. The only time I threw up is when I did the dumbess thing I could do, I took an oxycontin which did nothing for my pain but made me sick in the morning. Seems to me someone just doesn't get it and insulting folks around here who are trying to explain something you don't want to hear fucking pisses me off! If anyone can ride a k6-10 out while laying in bed is either fucking superman or not from this planet! |
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Title: Re: Clusters? Post by Margi on Aug 10th, 2006, 4:08pm um.... so, other than that, how did you like the play, Mrs. Lincoln? |
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Title: Re: Clusters? Post by Bob P on Aug 10th, 2006, 4:17pm My Gawd! I just can't believe the hostility and down right hurtfullness this place has turned into. What is wrong with you people! This is supposed to be a place where all headache sufferers can come to be soothed and comforted and just hugged to death! If it's hurtin', you belong here for certain! I think I'm going to leave forever and find a more understanding bunch of people! |
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Title: Re: Clusters? Post by JeffB on Aug 10th, 2006, 4:20pm Abe died laughing! ;;D |
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Title: Re: Clusters? Post by JeffB on Aug 10th, 2006, 4:21pm I juts read this thread during my lunch and the more I read the more heated I got. Hope I didn't insult anyone! |
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Title: Re: Clusters? Post by Kevin_M on Aug 10th, 2006, 5:19pm http://www.pahlow.net/images/monkey.jpg Shut up Bob! ;;D Quote:
You mean people who will understand a cut and pasted "Good Housekeeping seal of approval" and the word "MINE" means legal title to the yacht? |
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Title: Re: Clusters? Post by alchemy on Aug 10th, 2006, 5:24pm does anyone here have a good recipe for icecubes? [smiley=smokin.gif] |
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Title: Re: Clusters? Post by JeffB on Aug 10th, 2006, 5:31pm I've got a red pencil box ;;D |
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Title: Re: Clusters? Post by Sandy_C on Aug 10th, 2006, 5:34pm on 08/10/06 at 12:25:24, Margi wrote:
Margie, I love you dearly because you are one of the strongest supporters that any CH sufferer could ask for. However, laying down, whether in the dark or in the light, while having low kip level pain, is not, repeat NOT uncommon in CH. If you will, read the kip scale. Even Kip himself, said he could still "fall back asleep" - and that was at his level 6. If Kip could lie down with his pain to a level 6, why not anyone else? I don't believe that I've read anywhere on this loooong thread anyone saying that they can lay down with high K levels, let alone a 10 (no, Jonny, I don't think anyone could - unless it's after we've committed suicide). I know the Kip scale is meant to be used only as a tool to gauge the pain levels. Each of us is different. I personally believe that my first cycle never went beyond a 3 or 4, on Kips's scale, yet it was the worst pain I had ever experienced, so at that time, it was MY 6, because the scale said you could still lie down, so I did. I didn't sleep, but I layed down with ice, with tears, with writhing on the bed - but I was laying down. That was seven years ago. I know better now. I know the Kip scale is a relative gauge - and my level 6 could be your level 10, or Joe Blow's level 2. I also know that I have yet to have my first real K10 (suicidal - trip to ER). I've never gone to the ER, but I was looking for the bullets to go in my little Saturday Night Special and couldn't find them (Thank God). I think I've hit maybe an 8, and I know I never want to experience anything higher than that, so it's still out there - waiting for me. My point here, long winded as it is, is that we should not automatically discount anyone's symptoms because they can lie down, nor should we automatically say "Yes, this is CH - no doubt" We should continue to do what we usually do, which is advise the newbie to get diagnosed, do not rely on one opinion (especially the first one), and never, never stop researching on their own. These boards usually do a pretty good job at that, but now and then, this thread in particular, some of us completely discount a newbies diagnosis of CH based on something like laying down, or throwing up, or light sensitivity. Yes, sounds like migrane. But, as you've read, some of us CAN lie down, some us DO throw up, and some of us DO have light sensitivity. All I'm asking is that all of us to please do not just hit them with "absolute" comments that they do or do not have CH. Encourage them to get second opinions, POLITELY explain to them why you think they may not have CH, and treat them with respect. Not every newbie is a Troll, yet sometimes, we treat them as such. Sandy |
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Title: Re: Clusters? Post by Margi on Aug 10th, 2006, 5:49pm I think the newbie that started this thread was treated with respect and armed with more information that he started out with, wasn't he? As to this laying down thing...all I know is that my boy can't do it. Granted, he has the highest pain tolerance of anyone I know. I once saw the man run a table saw through his finger to the first knuckle and he blew it off like a mosquito bite. This guy can take a lot of pain. I think the tolerance of this issue has to go two ways here - those that can, do - those that can't, dance. I still think it's highly irregular to hear of those that can, though. My 'laying down in the dark' means - to ME anyway - laying down in the dark for the duration of the attack like I do with a migraine. A lot of the laying down need for migraine, btw, is to control the ensuing nausea - movement is also very painful because you can feel every hair in your eyelashes and eyebrows and it feels like your head is broken, and that moving it even a centimeter is going to fracture it more, ok? Maybe Mike's sleeping through his early levels and it's when it reaches the point that it wakes him up that he has to become vertical. But I have never ONCE in 20 years, seen him try laying down as he feels a CH coming on if he's awake because they hit him so fast. I can't believe that it's coming on any slower while he's sleeping. Sorry, I have big respect for you Sandy - you know that. But on this...I ain't budging. |
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Title: Re: Clusters? Post by Bob P on Aug 10th, 2006, 5:52pm Through the years I've read many articles on CH. Over and over again they state that one of the striking differences between meegrainers and clusterheads is the clusterheads need to be up and moving while being hit. From Doc Goadsby: Quote:
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Title: Re: Clusters? Post by Jonny on Aug 10th, 2006, 6:06pm If someone posts that they can lay down during an attack, I take it as that, not "I can lay down during a shadow" To me, a shadow is just discomfort and not an ATTACK! Someone asked if all HA's were 10's.....for me,the attacks that I cant stop (Which are rare nowadays) go straight to 10. Its been that way since I was 12, all through the 14 years before I was diagnosed....What a ride!!!! Dont get me started on folks that use the phrase "Silent attack".....WTF!!! |
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Title: Re: Clusters? Post by Kevin_M on Aug 10th, 2006, 6:10pm Going by the more indepth info volunteered by two people, the throwing up seems to not have it's source in clusters. Here it is associated with extreme pain, of which clusters of course has, but with any extreme pain also: on 08/10/06 at 12:05:51, nani wrote:
Here it is associated with the anxiety from clusters, but differentiates clusters from the source of throwing up. on 08/10/06 at 12:12:00, E-Double wrote:
In neither case could throwing up be used to diagnose clusters. |
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Title: Re: Clusters? Post by kcopelin on Aug 10th, 2006, 6:15pm Popcorn!!! Candy!!! Cigarillos!!!! Coffee!!! (she calls as she walks through the aisles of this very congested thread, hoping against hope that she can make a buck off of these clusterheads and be able to pay for her son's surgery at last) ;;D kathy |
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Title: Re: Clusters? Post by Sandy_C on Aug 10th, 2006, 6:30pm Margi, I'm not asking you to budge one inch. I know, from reading your posts, that your husband suffers terribly (and that's not a strong enough word) from Ch. And I know how much it hurts you. My husband feels the same way about me. I'm episodic, so I enjoy quite a bit of pain free time, yet when in cycle, my husband tries so hard to help me, yet knows there is nothing he can do to make my pain go away. The only point I am trying to make here is that as a board, dedicated to providing as much factual information as we can, dedicated to helping others in pain - CH foremost, but yet advising those we're not sure have CH to get second diagnosis opinions, do further research, we need to be very careful as to how we treat our newbies. I will not budge when someone of our membership gives a newbie an "absolute" response. By absolute I mean things like "you don't have CH because you can lay down - its classic migrane", or you don't have CH because you throw up, or even worse "you DO have CH - and take all these life threatening meds, or have brain surgery". Do you see where I'm going with this? We're not doctors. We should not be diagnosing, second guessing a newbies brand new diagnosis from his/her neuro. Yet we do this - and we do this with a great deal is dis-respect. If a newbie says he has been diagnosed (and we all know, this could be real, or not), please, at least be respectful in your responses. Remember, every single one of us was at one time at newbie on these boards. How were you treated? Again, Margie - I have no arguments with you at all about laying down, intensity of pain, duration of pain, because each of us is different. All I'm saying to all of us who post on these boards, is please, give our newbies the benefit of the doubt until proven otherwise. Please treat them with respect, because, whether it's CH, or something else, they are in pain and they came to us for help. Sandy |
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Title: Re: Clusters? Post by starlight on Aug 10th, 2006, 6:48pm Kevin, If you find the time read or just scan the link that I posted. The team of neurologists seemed to find that nauseau and vomitting (for both men and women--but more women than men) is a common symptom of cluster. You might not agree but it's worth considering at least. To everybody else--as for the laying down/not laying down, again this is ONLY worth considering--maybe not everyone experiences excruciating pain with every hit they have ever experienced throughout their life. It's a possibility only worth considering. There is no way that everyone's histories can be identical. With any ailment or disease you are simply never gong to find absolutely identical symptons, absolutely identical experiences with pain. Also, I was thinking, I know clusters are far worse than childbirth but childbirth ain't no picnic, and a lot of times women have laid throughout it for many many hours. That's just food for thought. |
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Title: Re: Clusters? Post by Kevin_M on Aug 10th, 2006, 6:54pm on 08/10/06 at 18:48:16, starlight wrote:
This is the real world here. Attaching "common" to throwing up just doesn't pan out. Labeling it a symptom is extraordinary. |
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Title: Re: Clusters? Post by starlight on Aug 10th, 2006, 7:00pm Kevin-- I'm not sure if this is an issue of semantics? But the team found exactly that--that it is a "common" symptom--meaning "not unusual", meaning "not extraordinary". And there in the article are exact numbers so that this doesn't have to be ambiguous. The article says that it is found so frequently that the researchers felt that maybe the diagnostic criteria POSSIBLY should be changed. |
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Title: Re: Clusters? Post by alchemy on Aug 10th, 2006, 7:06pm Linda, thankyou for the recipe. I have just one question. When I put the water in the freezer how long do I set the timer for? |
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Title: Re: Clusters? Post by Kevin_M on Aug 10th, 2006, 7:07pm on 08/10/06 at 19:00:34, starlight wrote:
Good luck. |
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Title: Re: Clusters? Post by JeffB on Aug 10th, 2006, 7:10pm on 08/10/06 at 19:06:48, alchemy wrote:
I have a freezer, am I supposed to put stuff in it? |
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Title: Re: Clusters? Post by LeLimey on Aug 10th, 2006, 7:10pm I think everyone has made their point and it's time to back away from the thread. Carrying it on isn't productive. |
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Title: Re: Clusters? Post by starlight on Aug 10th, 2006, 7:17pm Kev, I'm only trying to make a point not campaigning for anything to happen. And (to others)--most who have said that they could lay down have specified that they have done that at lower pain levels within a cycle, or as I myself said, have done that only when the headaches first began many many years ago. I don't think anyone claimed to have laid down during a KIP 8, 9, 10. So it just seems that there is an undercurrent really in this argument of not believing that anyone could EVER experience a HIT below 8, 9, 10 at any point in their headache career. It seems like that is really what the tension is about. |
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Title: Re: Clusters? Post by Jonny on Aug 10th, 2006, 7:21pm on 08/10/06 at 19:10:30, LeLimey wrote:
Who me? Im not the double posting attention wh.ore....LMAO ;;D |
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Title: Re: Clusters? Post by starlight on Aug 10th, 2006, 7:28pm Aw Come on Johnny, Is that the best you can give me? Love Star--the attention seeking wh.ore extraordinaire!!! |
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Title: Re: Clusters? Post by alchemy on Aug 10th, 2006, 7:29pm on 08/10/06 at 19:21:15, Jonny wrote:
no your just a wh,ore period LOL ;;D |
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Title: Re: Clusters? Post by Jonny on Aug 10th, 2006, 7:38pm on 08/10/06 at 19:28:23, starlight wrote:
Enjoy your stay, Burt.....it wont last long ;;D |
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Title: Re: Clusters? Post by Sandy_C on Aug 10th, 2006, 7:40pm Jonny and Bob P, Please, look at this from a newbies standpoint, not a CH sufferer of many years. l when I first come on these boards, Iwas told to take the cluster quiz, and look at the Kip scale. When I was a newbie, this is what I did. And Kip, on his his scale, said he could go back to sleep at a level 6. As a newbie, this is what I thought was what I should be able to do because this is what I was told is the "norm" for a clusterhead. Level 6! You should still be able to lay down-sleep!. Ok, sure! This is what I'm told, I'm a newbie, I'm supposed to believe it. Sure. It didn't work, it wasn't true FOR ME! We all know that the Kip scale is subjective to the individual sufferer. What is your 10, may be my 6, or vice versa. Can we all at least agree on that? Again, nobody on this thread has said anywhere, post it if I'm wrong, that we can ALWAYS lay down. And, Jonny, nowhere on the Kip scale does it differientiate between a "shadow" and a "hit". All the Kip scale does is give us a guideline as to pain levels - not shadow, not hit. Using the words "shadow" and "hit" is a matter of word semantics that long time sufferers know the difference, but newbies do not. I'm just getting very tired of some of us on these boards jumping to conculsions in both directions - it is - it's not CH, by posting "absolute" responses. Absolute meaning you absolutely don't have CH, or you absolutely do have CH. We're not doctors. The cluster quiz is just that, a quiz to help weed out those who obviously do not have CH, and those that are inconclusive continue to ask their questions. The Kip scale is only a tool to measure pain levels. Since we are all different, that tool should be use as a tool, not an absolute. I was once a newbie. So were all of you. Please keep that in mind, always. Sandy |
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Title: Re: Clusters? Post by Linda_Howell on Aug 10th, 2006, 7:52pm Quote:
::) If you will re-read my recipe sweetie, I said to put it on your cars manifold. (hijacking in progress) |
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Title: Re: Clusters? Post by rickyshot on Aug 10th, 2006, 7:54pm here here SAndy. Although I generally agree with the criteria of Jonny for CH and Margi too I realize that the disease is rare and still quite a mystery. Therefore why can't new criteria be considered. Not everyone follows a classic path to the letter. I have gotten a lot of great info from these boards but I always run it by my doc > he knows I am starting to bust and have detoxed. And I too have laid down with what I perceive to be kip one and twos although I must admit not still in bed. To the original post a lot of it sounds like migraine but I am not a doc just some poor scholmozzel who happened to suffer chronic complicated migraines and episodic ch for 22 years. There are also signs of CH in the original post. Maybe he has both ch and migraine like me. Maybe it is some other kind of ha like CPH. I would like you Sandy go to the doc for that one and ask my family here to really treat newbies a little better. When I first posted here a year and half ago y'all were so great. What if I was generally flamed and mistreated by a good number of y'all. I would have never got oxygen or started to bust. I would be suicidal still. Don't yall see the good you have done and can do. Disagree if you must but please do it respectively without flaming when it comes to the specific topic of CH and treatment. AS far as other OT threads go that is another story and you can fight all y'al want. But on CH sometimes this board is all one has. |
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Title: Re: Clusters? Post by Jonny on Aug 10th, 2006, 8:03pm on 08/10/06 at 19:40:01, Sandy_C wrote:
Ever hear the phrase "Kip 10 shadow"? Its called shadow for a reason! BTW...you are all playing with "Cardogman"...remember the guy that got banned....hes back!!!! Keep playing with him....he loves it. |
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Title: Re: Clusters? Post by Jonny on Aug 10th, 2006, 8:10pm on 08/10/06 at 20:02:24, starlight wrote:
Gee Burt, did I call you a wh.ore? I dont remember ;;D Please quote it!! |
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Title: Re: Clusters? Post by starlight on Aug 10th, 2006, 8:10pm Actually, I won't be back Johnny cause I for one don't have the stomach for people like you. PS I'm not CarDogMan--just someone else who doesn't put up with your kind of BS. |
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Title: Re: Clusters? Post by Jonny on Aug 10th, 2006, 8:13pm Quick Burt....change names...DJ is on your trail and going to delete your ass again.....LOL [smiley=bigtiny.gif] |
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Title: Re: Clusters? Post by starlight on Aug 10th, 2006, 8:24pm Go ahead and have your guy "delete my ass". As I said I won't be back. Maybe people around here can stomach you. I can't. If you wanted to call me a who.re you should have had the guts to PM me and bring it off the boards. By the way, that is not an invitation. Cause I won't be back here. As I said I don't deal with clowns like you. |
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Title: Re: Clusters? Post by Jonny on Aug 10th, 2006, 8:27pm on 08/10/06 at 20:24:44, starlight wrote:
Burt, your as easy to spot as CHTom.....LOL Too fuckin funny!! Now, post how you are leaving AGAIN.....its your MO ;;D |
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Title: Re: Clusters? Post by Sandy_C on Aug 10th, 2006, 8:34pm on 08/10/06 at 20:03:36, Jonny wrote:
No, Jonny, I have never heard the phrase a Kip 10 shadow. Please enlighten me. Remember, I've only been having Ch for 7 years, so compared to you, I'm still a newbie. As for Cardogman - I gave him the benefit of the doubt when he was a newbie, I have learned that he's not what he pretended to be, he has been blocked from my e-mail, and until I know FOR SURE that one of these newbies IS Cardogman in disguise, I will continue to give these newbies the benefit of the doubt until they prove me wrong. Then, their A$$ is mine. OK? Sandy |
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Title: Re: Clusters? Post by kevinpix on Aug 10th, 2006, 9:24pm can't we all just get along??? Come on now, play nice! |
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Title: Re: Clusters? Post by alchemy on Aug 10th, 2006, 9:51pm on 08/10/06 at 19:52:20, Linda_Howell wrote:
Ha Linda ya thought you had me! everyone knows thats the recipe for dryice ::) |
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Title: Re: Clusters? Post by chewy on Aug 10th, 2006, 10:15pm Quote:
The team of Dr. Abbot and Dr. Costello. |
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Title: Re: Clusters? Post by Sean_C on Aug 10th, 2006, 10:40pm on 08/10/06 at 21:24:10, kevinpix wrote:
Isn't it past your bed time? ::) You gotta love this place ;;D Sean............................... ;;D edit to add: thanks Chew ;;D For the benefit of new people Kevinpix is our resident troll. He serves no purpose except to confuse, obfuscate and distress posters while providing a wealth of misinformation of his own. The best response to him is no response. All we do is inform people as best we can that his posts are unsound. |
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Title: Re: Clusters? Post by chewy on Aug 10th, 2006, 10:46pm For the benefit of new people Kevinpix is our resident troll. He serves no purpose except to confuse, obfuscate and distress posters while providing a wealth of misinformation of his own. The best response to him is no response. All we do is inform people as best we can that his posts are unsound. |
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Title: Re: Clusters? Post by unsolved1 on Aug 10th, 2006, 10:48pm I just wanted to say that I don't believe that Bob kipple meant that he goes back to sleep with a KIP 6. I believe that he means ... the pain doesn't go over a KIP 6 and when it's over - he goes right back to sleep. Bob was referring to when he is awaken by a KIP 6. It's much easier to get back to sleep after having a 6 then it is after waking to a 9 or a 10. Trying to go back to sleep after a 'big one' always leaves me in fear of the next one that may or may not come. The fear is not so big after a 6. UNsolved |
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Title: Re: Clusters? Post by Sean_C on Aug 10th, 2006, 10:54pm on 08/10/06 at 22:48:52, unsolved1 wrote:
After the big one Mike I am never relieved its over, I'm always scared shitless he's gonna turn around and come back too ;) Its a mental game he plays with us for sure ;;D |
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Title: Re: Clusters? Post by starlight on Aug 11th, 2006, 12:24am Don't know Kevinpix at all but from the little I've read from him he seems like a pretty nice guy. One thing I can say in his favor...I'm sure he wasn't the kid in the schoolyard beating up the other kids for their lunch money. And for whatever "misinformation" you claim he gives, I'd much rather have that than the complete lack of information offered by these Neanderthal bullies (you know who you are). OK, Johnny, now I'm out...try to at least let the others keep their milk money, K? |
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Title: Re: Clusters? Post by BMoneeTheMoneeMan on Aug 11th, 2006, 2:28am How funny that every person that asks Jonny to back the fuck up is not only labled a troll, but labled as Burt, aka the cardogman. Starlight, meet Jonny, he has tattoos. I will agree with Jonny, though, on his earlier post: He is turning 44 soon. Now back to your regularly scheduled running off of sufferers or supporters that have a backbone. B$ |
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Title: Re: Clusters? Post by chewy on Aug 11th, 2006, 5:56am Quote:
Quote:
Quote:
Anyone keeping score? |
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Title: Re: Clusters? Post by Bob P on Aug 11th, 2006, 2:12pm It's what good old Den referred to as "The Hello/Goodbye Girl". I ain't never seen a place with so many crisis junkies all in one place. |
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Title: Re: Clusters? Post by Margi on Aug 11th, 2006, 2:20pm Where IS Den, anyway? His wisdom is missed around here. Did the mothership finally come to reclaim him? |
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Title: Re: Clusters? Post by starlight on Aug 11th, 2006, 2:25pm Don't worry BOB--I'll leave you alone with your tatooed men. I suppose people who don't love a crisis would chuckle at Johnny's humor. Sorry...I wasn't raised by wolves. |
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Title: Re: Clusters? Post by wildhaus on Aug 11th, 2006, 2:31pm I had a very long day, and in-between I got on the bored and was going over this thread…. I have to say….. you got me through the day…….. had a blast reading some of the posts I wish the old Swiss man would have still be with us in Clustervill….. To the point……. I wish I could lay at above 5 level….. get my maske and just suck it, and watch TV….. but it seems I am on the unlucky said…. have to move…. but as I am a newbie I just probably lack experience….. I hope this will come with time….. or better the beast will just go away for ever…… !!!!! And pain tolerance…… we can deal with pain better with time……. but it still hurts the same…. we just develop (some or most of us) a routine….. and little habits that make the pain more or better manageable…… but the pain is still the same pain!! And as a newbie……. could you guys re-diagnose me……….. so I don’t have CH or whatever it is the thing that I have…… on the other hand I love my O2 tank…. so why not call myself a CH’er…… just for the heck of it…… Ladies an gentleman….. boys and girls you have made my day…… and inspired me to sarcasm…………. but I still love you all…… and I hope you will not try to kick my behind out of this family….. have a nice weekend PF times, and be good….. Michael P.S you have to forgive me for my English… |
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Title: Re: Clusters? Post by Margi on Aug 11th, 2006, 2:33pm on 08/11/06 at 14:25:06, starlight wrote:
um...pardon? Who DOES love a crisis? :-/ so...you're saying people that don't like Jonny (no H, thanks) ARE crisis junkies? Damn. Does that mean Bob's right? Rats. I hate when that happens. |
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Title: Re: Clusters? Post by alchemy on Aug 11th, 2006, 2:44pm I saw a wolf once. A guy was walkinng it down the street. It wasn't full wolf but damn close. What a big dog or wolf how would that go? |
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Title: Re: Clusters? Post by starlight on Aug 11th, 2006, 2:46pm Margi, What's it to you? Johnny's an ass. I don't appreciate his treatment of me. I don't think it's funny, b/c I have some respect for myself. Maybe you as a woman should care that there is a regular here (Johnny) calling women on this board who.res. When I log onto a cluster headache website for support I don't anticipate and certainly don't enjoy or tolerate being called a who.re. Somehow as a woman I don't find that amusing (along with several other comments that he made). Somehow that behavior is so juvenile, so disrespectful, and not to mention so sexist that it seems you as a woman should (at the very least) not be patting him on the back for it. There's really nothing more disturbing than a woman who is going to encourage stuff like that. There were a couple of threads running here today of interest to me so I returned (also at home waiting for 02 refills to be delivered) so I checked in. But frankly, Margi as the person in charge here, I don't know what you gain by encouraging this crap and I really don't appreciate joining a support group so I can be treated like garbage. This is nothing for you to be proud of. |
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Title: Re: Clusters? Post by unsolved1 on Aug 11th, 2006, 2:48pm on 08/11/06 at 14:31:09, wildhaus wrote:
LMAO !! [smiley=laugh.gif] |
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Title: Re: Clusters? Post by Margi on Aug 11th, 2006, 3:00pm OK, first of all? I'm not the person in charge here, nor do I pretend to be. I moderate the supporters boards for DJ and, that's it. Jonny didn't call you a who.re. He called you an attention.who.re. Big difference. He could have easily change that word to hog or junkie, but that doesn't mean that he called you a pig or a drug user either. I think you need some comprehension work, maybe? This has nothing to do with you (or me) being a woman... I've heard Jonny use that expression when talking to men as well. And, uh, where did I ever encourage anyone to post anything? Please show me. Everyone here is different, some are rough around the edges, some aren't. Jonny is a person that will defend to the death the right for a clusterhead to find relief, often to his own self-sacrifice, he's proven that repeatedly in the years and years he's been here. He and I have gone toe to toe in the past too but, at the end of the day, he is a good man and I'm proud to have hugged his neck in person and call him friend. He takes his commitment to ch.com very seriously and there are a lot of us here who respect that about him. If I was in trouble, Jonny would be the one of the first here to help. And, this may surprise you but...he'd probably be there to help you too, if he thought you genuinely needed it. So, that's what it is to me. |
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Title: Re: Clusters? Post by Linda_Howell on Aug 11th, 2006, 3:08pm Go Margi!!!!!!!!!!!!!!!!! Are you hearing the deafening roar of applause from California? ;) |
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Title: Re: Clusters? Post by Margi on Aug 11th, 2006, 3:10pm LMAO - is THAT what that noise is? I just smacked the crap out of my hard drive. I thought it was doing the chicken again. ;) |
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Title: Re: Clusters? Post by starlight on Aug 11th, 2006, 3:11pm Margi, First of all--I don't care what other adjectives who used with the word "who.re"--I don't appreciate being called a "who.re". I have never been a member of a headache support group online but I have been a member of another website where we discussed political issues and things like that--things there would get very heated at times, personal attacks sometimes made--but never, not once, did it turn into the phenomenon of a bunch of schoolyard bullies surrounding someone. And as for your last sentence which is either calling me a liar or reenforcing Johnny's feelings that I am a liar and that I don't need support--you're wrong. You and Johnny both get off your high horses. I have had cluster headaches for 18 years. Just because your husband has cluster headaches does not give you the liscense to tell someone who has been diagnosed by four different people that they, in fact, don't need support. The guy I lived with for six years supported me through clusters, also researched the condition on the net, but he would never have had the audacity that you do to feel he could tell people with a formal diagnosis that they are in fact lying. He would have had no grounds to ever feel that he had that kind of insight into anything. And if you call Johnny a friend, that is great for you, does that mean others have to enjoy his being "rough around the edges"? I have no problem with "tough guys"--I have a problem with nasty people. |
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Title: Re: Clusters? Post by chewy on Aug 11th, 2006, 3:14pm OK. Your not an attention w"hore, even though you keep posting after leaving 3 or 4 times. How about "MAJOR FUCKING WHINER". That better? |
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Title: Re: Clusters? Post by starlight on Aug 11th, 2006, 3:19pm Chewy, I guess people should just take crap from people like you and keep their mouth shut. Go get a fucking punching bag. |
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Title: Re: Clusters? Post by Margi on Aug 11th, 2006, 3:24pm Holy frig, woman - take a pill. I didn't call you a liar, my horse isn't high, nor did I say you don't need support. I think you do and lots of it. What I SAID was that if Jonny thought you needed help, he would be there to help you. As in, if a mugger was at your door, he'd beat the crap of him for you and not think twice about it. We're back to square one though, I will never believe that laying down in a dark room, throwing up indicates cluster. So please stop trying to convince me that it does, ok? |
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Title: Re: Clusters? Post by alchemy on Aug 11th, 2006, 3:28pm I'm trying to remember that wolf's name I think it was something like thor or thunder. |
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Title: Re: Clusters? Post by Margi on Aug 11th, 2006, 3:30pm Thor? Is that a wounded wolf with a lisp? |
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Title: Re: Clusters? Post by alchemy on Aug 11th, 2006, 3:34pm on 08/11/06 at 15:30:10, Margi wrote:
no but I think he stuttered like wwwwoof wwwwwoof |
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Title: Re: Clusters? Post by JeffB on Aug 11th, 2006, 3:35pm I haven't taken a dump yet today now my stomach hurts. :-/ |
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Title: Re: Clusters? Post by Margi on Aug 11th, 2006, 3:37pm on 08/11/06 at 15:34:23, alchemy wrote:
you really have a thing for wild dogs, huh? Whatever, dude. |
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Title: Re: Clusters? Post by Jonny on Aug 11th, 2006, 3:37pm just for the record, this is exactly what I said on 08/10/06 at 19:21:15, Jonny wrote:
Does anyone see a name in that quote? ;;D |
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Title: Re: Clusters? Post by alchemy on Aug 11th, 2006, 3:39pm on 08/11/06 at 15:37:36, Margi wrote:
just playing Margi ;;D |
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Title: Re: Clusters? Post by Sandy_C on Aug 11th, 2006, 3:40pm on 08/11/06 at 15:00:11, Margi wrote:
Starlight Please read Margi's post again. Yes, Jonny is abrasive, yes, Jonny is abusive, yes, Jonny is obnoxious, and yes, Jonny can be a total prick. But, Starlight - if you ever needed an O2 tank, a mask, a regulator, meds because you could not get them from your own doc - Jonny would find them for you. I will always give him a hard time because he can be so abusive to some newbies ("some" being the key word, and Jonny is not the only one that pisses me off with their abusiveness to newbies), he's everything I said above - abrasive, abusive obnoxious and a prick. But I would trust my very life to Jonny because I know he would be there for me if I needed him. Nobody is making excuses for what Jonny says or anyone else on these boards says we are what we are. We can make you hate us, argue with us, think we are nothing but a group of CH "junkies" who get off on our own pain. But, if you truly suffer from CH, and you truly are looking for information, and you truely need support, this board, and the "big bullies" of the board, will be the first people to step up to the plate. All we ask of any newbie is their honesty and their desire to learn more about their affliction. Sandy |
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Title: Re: Clusters? Post by wildhaus on Aug 11th, 2006, 3:45pm Starlight…… I don’t know you, and to be honest I would rater put you on IGNORE….. BUT you have gone one step to far…………. I know Jonny can defend himself better than I can ever do it for him……. and still you have repeatedly…… and unfoundedly insulted one of the noblest personas I have ever met in my life……. (man how did I come up with a clever sentence like this) and like most of us in this virtual community, we are very proud of having “this” person called Jonny….. and for my self, I had the honour to be hugged by him and more so him calling me BRO!!!! so Starlight it may well be that you have CH, and that you are hurting…… but with all due respect…… we are happy or more, very happy the way we are as a community……. and you why don’t you just go to where ever you came from…… and let us have it the way we have it …!!!!! AND DON’T EVER AGAIN…… Spit into a well you might drink from……as I am drinking from this well…… and love the taste of it…… and I don’t think I will apreciate your spit in it!!!! SO JUST GO….. AND MAY GOD BE WITH YOU…… BUT GO!!!!!!!!! Michael |
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Title: Re: Clusters? Post by JeffB on Aug 11th, 2006, 3:48pm Well said Michael! Great analogy with well stuff. |
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Title: Re: Clusters? Post by Margi on Aug 11th, 2006, 3:50pm on 08/11/06 at 15:39:14, alchemy wrote:
yeah, me too. I forgot to add my smiley, though. I was speaking in my 'what up, my homey dude, bling bling, get down wit' yer bad self' accent. Loses something in the translation though. My 'whatever dude' was one of acceptance, akin to the 'whatever cranks your turkey' saying of the 70's, or the 'whatever floats yer boat'. I like wild dogs too. :) it's all good. :) <-- there, remembered my smiley this time. and i'm making that sign with my hand, the thumb and pinky up thing and pointing downwards. |
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Title: Re: Clusters? Post by seasonalboomer on Aug 11th, 2006, 3:51pm i was gone for a couple of days. so i missed the opportunity to participate in this car-wreck of a thread. But like most people who can't help but ogle as he passes by I place my vote for the best line of this entire 9 pages on Rickyshot who said: "Throwing oneself on the bed and writhing does not count as laying down cluster headache." Fuck'all that is a perfect aphorism. People spend weeks sometimes trying to write things with that level of perfection. That's a good one, I don't care who ya'are. The rest of ya' piss off till you can say something more intelligent than Ricky did. Scott |
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Title: Re: Clusters? Post by Jonny on Aug 11th, 2006, 3:53pm on 08/11/06 at 15:50:08, Margi wrote:
LMMFAO [smiley=laugh.gif] |
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Title: Re: Clusters? Post by alchemy on Aug 11th, 2006, 3:53pm [smiley=laugh.gif] Margi it's been awhile since I've been in Canada your accent threw me |
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Title: Re: Clusters? Post by Margi on Aug 11th, 2006, 3:56pm well, see? there ya go. Slide on over here and I'll make ya some poutine. :-* |
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Title: Re: Clusters? Post by alchemy on Aug 11th, 2006, 3:59pm Ah Wi follow me I right behind you [smiley=laugh.gif] |
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Title: Re: Clusters? Post by Margi on Aug 11th, 2006, 4:01pm LMAO I've never seen Oui spelled that way before. It's cute though. Sounds a bit Chinese though but...what the hell, right? Out here in the west, we just say 'yup'. ;) [smiley=laugh.gif] |
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Title: Re: Clusters? Post by alchemy on Aug 11th, 2006, 4:07pm I can't spell in French. I lived with a French Canadian family from Quebec. The old man used to say I live up top the hill halfway down. great directions huh? |
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Title: Re: Clusters? Post by Margi on Aug 11th, 2006, 4:14pm Yup. Makes perfect sense to me. Kinda like the Newfie saying "stay where you're at, I'll come where you're to." Out here in the west, we're much more civilized, as we munch quietly on our prairie oysters. |
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Title: Re: Clusters? Post by alchemy on Aug 11th, 2006, 4:16pm [smiley=crackup.gif] In Lewiston Me. it's predominately french and you can always tell when it's springtime cause they hang they're maple buckets on the lamp posts |
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Title: Re: Clusters? Post by Margi on Aug 11th, 2006, 4:22pm pssst, Jim....you think anyone remembers what we were talking about now? |
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Title: Re: Clusters? Post by alchemy on Aug 11th, 2006, 4:31pm I don't even remember |
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Title: Re: Clusters? Post by Melissa on Aug 11th, 2006, 4:36pm [smiley=huh.gif] |
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Title: Re: Clusters? Post by alchemy on Aug 11th, 2006, 4:59pm on 08/11/06 at 16:36:14, Melissa wrote:
exactly ;) |
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Title: Re: Clusters? Post by unsolved1 on Aug 11th, 2006, 5:36pm I'm getting ready to have a cluster ... I'd better go lie down ! http://mahopa.de/bilder/lustige-forenbilder/this-thread-is-gay.jpg [smiley=laugh.gif] [smiley=laugh.gif] [smiley=laugh.gif] |
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Title: Re: Clusters? Post by Grandma_Sweet_Boy on Aug 11th, 2006, 5:57pm on 08/11/06 at 16:22:58, Margi wrote:
Dear God! I hope they've all forgotten - as this thread has finally done something useful - made me laugh after a shi*ty day at work! Love the Alf, by the way. And to those that are inclined to pick on jonny or chewy - I'd suggest you back slowly away from your computers. It's a battle you'll never win ;;D Now I want y'all to pick up your toys and play nice - - - - or else!!! Grandma has spoken! |
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Title: Re: Clusters? Post by rickyshot on Aug 11th, 2006, 6:39pm on 08/11/06 at 15:51:48, seasonalboomer wrote:
Scottie. I didn't know you cared ;;D I was so determined not to post on this thread again. Flattery will get you everywhere. |
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Title: Re: Clusters? Post by Thomas_Martin on Aug 11th, 2006, 6:58pm mannnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnn.... Seriously, this thread is wacked. To throw my two cents in, I have never in my 10 years of clusters been able to lay down while under an ATTACK. sure, I've had some creepy shadows that I could ride out while I was so goddamn tired I just didn't have the energy to get up. Was those an attack, no!. Because if I had an attack I would be up pacing, deadtired, but pacing. While having an attack I do sometimes rest. Meaning, I do sit down after pacing while my damn CH gives me a 15 second breather. But falling back to sleep... naw. That's just straight out impossible for me. |
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Title: Re: Clusters? Post by starlight on Aug 12th, 2006, 12:18am Sandy, If Johnny had something to say to me and he had said it respectfully there would have been no problem. I am sure Johnny has been helpful to people. But there is just no point in making excuses for him. Somebody like that is just out to start a fight. Doesn't matter if he's a great guy when the cards are down. He's getting in people's faces, trying to intimidate people, and he's way out of line. You know, he got the reaction he wanted and watch...he'll keep doing it to people after I leave cause his MO is he needs to try to intimidate people regularly. I've known plenty of people like him in my lifetime--and yeah, there's the sweet teddy bear side and then there is just the prick side. But you know, guys like him that go around getting in everyone's face--that's not someone I want to know, that 's not someone I want help from. But that's just me. Pretty much everyone else here has been great. |
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Title: Re: Clusters? Post by starlight on Aug 12th, 2006, 12:36am Margi-- you're definitely allowed to have your opinion. I said that as a 14 year old I could lay down with these headaches. I said that that ability did not last long as the headaches grew more severe in pain intensity. Then I would writhe, dance, pace around crying, the whole nine yards. I understand that since your husband gets them you see him doing those things, you see the pain he is in, you know there is no way he can lie down. When I turned 18 I could no longer lie down. I did not get the headaches age 15 or 16 (and that may have been b/c I coincidentally had dosed on acid those two years b/c after that they came every yr.) Maybe in teenagers the hormones are not balanced out yet so the headaches can possibly exist on a slightly tamer level--that is my uneducated guess--and then they grow more sever in pain as the hormones even out. I understand your view on not lying still. Essentially I was able to lie still only during that one bout as a 14 yr. old. Anyway, that is the long and short of it. |
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Title: Re: Clusters? Post by georgej on Aug 12th, 2006, 1:35am on 08/11/06 at 14:44:43, alchemy wrote:
We got actual runnin' around woof's here. The feds planted 'em. Shipped 'em down from Canada. But it's okay. I think the woof's only eat Democrats--that's why we got so few of 'em. George [smiley=cowboy.gif] Thought this thread needed some political content. Nothing like a little political talk to calm everybody down, right? |
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Title: Re: Clusters? Post by kcopelin on Aug 12th, 2006, 11:34am SEX....POLITICS....RELIGION....all bait for argument. Thing is, in this community, we might argue, disagree, agree to disagree, even call each other names sometimes...I mean we do put the fun in dysfuntional, but when someone is in pain and seeking ansers and support this is the place to be. Us CH warriors, at least many of us, have bristles and armor and sarcasm and gallows humor. We also have a profound distrust of anyone touting a cure. And we totally don't like trolls. But we will share our O2, our knowledge, our support and our compassion without a second thought with anyone going through CHs. So, there, I think that's all I have to say right now.... except...did you hear about the liberal Democrat homosexual priest? 8) kathy |
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Title: Re: Clusters? Post by kevinpix on Aug 13th, 2006, 9:17am Bump! |
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Title: Re: Clusters? Post by chopmyheadoff on Aug 14th, 2006, 6:27am there is no way i could lye down or even stay still during a hit. And i dont think it is anything to do with pain tolerance. It is the NATURE of the pain that makes it impossible to stay still. i cut off my thumb last year and that really hurt but the pain of ch is different, i dont know how to describe it but it just feels different. it would be like trying to stay still while someone pulled out all your fingers and toe nails with a pair of plyers |
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