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Title: New to your board. Post by Locomotive_Skull on Jun 18th, 2003, 4:11pm Hello. I was searching around for Clusterheadaches on the web and found this site. I must admit, I am suprised to find an actual community of "cluster heads". I am not sure what kind of help I can offer, but it is an awesome site and I would like to hang around. I am not much of a forum user, but I find it rather comforting that most of you have something in common with me. As most of you probably know, a non-clusterheadache sufferer has no actual clue as to how painfull they can be, and it is nice to be able to communicate with persons who can relate. A litle background= I have suffered from these "headaches" for a long time, and never heard the term "cluster headache" until just recently. I had not been to a doctor about my head for several years. A few weeks ago, I started to get them on the left side ( In thirteen years, this never happened ) and got a little freaked out. I had my wife make an appt. with a young doctor in town ( she is a pharmacy tech and knows all the docs ) and he showed me some paperwork on clusters after a brief description to him about my head. I was completely taken back when I read the information on clusters. There was no doubt whatsoever that this is what I suffer from. He told me they were rather rare, and docs were just starting to become familiar with them. All the meds he could offer from his arsenal were ones I have taken before except Imitrex. I was under the impression that I was a migraine sufferer for a long time. I have learned alot about the differences however. Anyways, He gave me some Imitrex pills and about 10 sample shots. The pills are useless, the shots kickstart my heart, make me sweat profusley and give me the shakes. My headache is gone within minutes of the shot, but comes back hours later. I will keep what's left of the shots for emergency purposes. I am in heart-atack country as it is, and don't like the way those shots make my ticker hum. Anyhoot, sorry for the long post. Please don't confuse being a little excited about this site with having diarrhea of the mouth. Thanks for listening folks! |
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Title: Re: New to your board. Post by scotg. on Jun 18th, 2003, 4:26pm Hey welcome, I just recently found this site after years myself, and i too found it to be the same. Hey check out the imitrex tip to the left. It breaks down the shot into two or three smaller ones. Might help ease the heart thing a bit. Glad your hear... Scot |
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Title: Re: New to your board. Post by jonny on Jun 18th, 2003, 4:30pm Welcome aboard, Loco Grab an oar and head for the back of the boat, take a seat and start rowing...this way I wont have to call for the coot master general to start swinging at your head to kill the beast. Just remember, im King around these here parts ...LOL ;D Seriously...you will learn alot about whats in your head here, welcome!! ...................................jonny |
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Title: Re: New to your board. Post by Linda_Howell on Jun 18th, 2003, 4:38pm Everyone here identifies wholeheartedly with your 1st. paragraph. Contribute what you can, and just know that we're all to help each other deal with these HA's. Love your screen name..... LindaH |
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Title: Re: New to your board. Post by cathy on Jun 18th, 2003, 4:40pm Welcome aboard...sorry yr having to join the crew but you'll not find a better one... btw...as a non-clusterhead sufferer I would just like to politely point out that I do have a liddle inkling of what a clusterhead sufferer goes through.... :) Cathy a supporter |
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Title: Re: New to your board. Post by Live4Fun on Jun 18th, 2003, 4:41pm Welcome aboard Loco! Sorry you have to be here though :( Like jonny said... grab an oar, start rowing with us, we need all the oar power we can get! Bryan |
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Title: Re: New to your board. Post by cbolony on Jun 18th, 2003, 4:56pm Locomotive_Skull Welcome to the board Quote:
That happens when you use the imitrex for the first time. Get that warm feeling going to you head feels nice when the CH is gone in about 5-10 mins.Take scotg.advice and go to the left side of the board and click on imtrex tip. And yes jonny is KING of this board ;D |
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Title: Re: New to your board. Post by Charlie on Jun 18th, 2003, 5:00pm Welcome Loco. Glad you chugged on over. Like you, I was dumbfounded at the number of clusterheads and the great community. This place is unique for medical support boards. Lots of wonderful information and more friendly and bizarre people than I expected. I suppose it's the delight of finding others who know exactly what you're going through. Also, it's finding that there really are things you can do to at least cope with this horror. I found the place addictive too. Stick around and feel free to rant and rave or just let us know how things are going. Here is a link to a letter that you can copy that will help you to get others to understand that this syndrome has little to do with a headache: http://www.ouch-uk.org/ch/note_colleagues.cfm Here is a technique that I used very successfully and others have had success too: Dr. Wright's Circulatory Technique This is not transcendental meditation, imagery, relaxation, or anything psychic. It's entirely physical and takes a lot of work and concentration. Give this method a good workout. It’s not a miracle, but it’s been helpful to many. When I was diagnosed, my neurologist said to treat this as a vascular problem. I was told to concentrate on “redirecting” blood circulation in order to retard flow to the head. This is done by trying to “send” blood into the arms and hands or other extremities. When properly done, your hands will become warm and redder with increased circulation. I also found it easier to concentrate on one hand. This relieves just slightly, the pressure on the affected vessel, which indirectly causes our pain. We all have this ability but it can be exhausting. I was often able shorten my attacks from about half an hour to no more than a few minutes. Sometimes, when awake, I could entirely abort the attack IF I KEPT AT IT. Often, I would suffer only minor discomfort instead of excruciating pain. Do not stop just because your hands are warm or redder. Keep this up until you are sure it's subsided. If you let up or lose concentration, it’s very hard to restart this process. It may take some time but when this works, the relief is almost immediate. I learned this from the doctor in a few minutes. He simply told me to try to keep blood away from the head. He thought it easiest to concentrate on the arms and hands but any place that works for you is fine. He said to think of it as "filling your hands" with redirected blood. It’s important to keep at it THROUGH the pain. This will be difficult, but it’s the only way this technique will work. Don’t let up until you are sure the attack has ended. This will not always work, but I think it will always have at least some effect on the severity and duration of the attacks. It can be useful between medications or while waiting for some other drug to take effect. All it takes is a little practice. It was fairly easy to learn and what I'm writing here is more than I got from the doctor, as I've drawn from my own experience. When awakened in horrible pain, it’s very hard to focus, but I think it’s always worth a try. This costs nothing but hard work, is harmless, non-invasive, and it gives us a fighting chance. I wish you the best of luck - Charlie Strand |
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Title: Re: New to your board. Post by Mark C on Jun 18th, 2003, 7:41pm WELCOME http://barelybad.com/images/pickup1.jpg Fuck all this rowing....I think I found the OUCH yacht and it's got a MOTOR! |
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Title: Re: New to your board. Post by stevegeebe on Jun 18th, 2003, 7:56pm Loco....Look at this shit by Mark. Are you in the right place or what? Welcome to the Tribe. Steve G |
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Title: Re: New to your board. Post by Locomotive_Skull on Jun 18th, 2003, 8:21pm Thanks guys. Quote:
That's right on the money. As well as "The Devil" anology you guys have. I think sometimes people not understanding, is probably the most frustrating part. Don't get me wrong, I aint' looking for a pity party from anyone (including those around here), I just wish sometimes others (like my wife) actually understand that not only does this hurt, but I carry a pyschological burden because of it as well. I know I do. I don't go around pissing and moaning, or feeling sorry for myself, but I know it affects the way I think about certian things, or affects my emotions from time to time. Anyhoot, Just let me know if I ramble too much about myself, or talk about things taboo amongst the community. I have a few questions that may sound like rhetoric to some of you, or stupid, but I aint' asking for shits and giggles. Maybe after searching your forum I will find the right places to ask peticular questions. 1. Can any of you put them off? Stall them until later? I.E., I am at work, the plant manager is going over something important with me, then it starts. I can postpone it, but it WILL come back later. 2. Do any of you have the problem with drinking a few beers, then triggering one? I read some about this and it happens to me every time. 3. Do any of you have them on either side? Both sides at the same time? I have never had them at the same time, but lately, the right side will stop, then the left kicks right in. 4. Do any of you wake up in the middle of the night with one? I do like clockwork. 5. How many of you get them every day? I would be what Simon Bower reffered to as "chronic". The most I went without one was 9 days. I remember the headache I suffered quite well on the 10th day. Charlie, I think sometimes I do that, but not really realizing it. Here is an example= I will be doing my usual "fish flop", thrashing around voodoo dance, then right in the middle, I will stop. I will get on my knees and put my head face down on the couch or bed. I will hold my forehead very tightly and concentrate REAL hard on a single thought. Any subject will do. From bulding a fence around my house to something at work. It's almost like I feel far away for a few moments, and the pain is somewhere else. As soon as I break this concentration, I float right back into it. I have never tried the "blood flow" medatation, but will tonight. I am willing to take any advice from any of you. |
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Title: Re: New to your board. Post by Linda_Howell on Jun 18th, 2003, 8:37pm 2. Alcohol is a definite trigger for episodics. 3. Most of us get them on a particular side. Only a few of us have reported getting them on both sides at the same time. Very rare thank God. 4.always 5. I have been hit every day for the last 11 yrs. (out of 16) with no less than 3 LindaH |
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Title: Re: New to your board. Post by Linda_Howell on Jun 18th, 2003, 8:39pm Oh......a p.s. These are NOT stupid questions. LindaH |
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Title: Re: New to your board. Post by Live4Fun on Jun 18th, 2003, 8:46pm Here are answers to your questions, from my experience: 1. If you can put them off til later, you have mastered some technique unknown to me. I know I fight and fight if I feel one coming on, but if it wants to come, it's gonna come. If you have learned a technique to hold them off until a more opportune time, please please share with us. I would like to know how to do that :) 2. Absolutely, alcohol is a key trigger. 3. I get them only on the right side, but some do have them on both sides, but as far as I know only one side at a time, never both at once. 4. Sleeping in an elevated position can help fight them off a little, IME. 5. I am episodic, thank god, the demon leaves me alone for 9 months a year. Never feel bad for asking questions. That is why we are here. There is a LOT to read on this site and sometimes you just can't cover it all. Plus, IMHO it is easier and more comforting to discuss with other people than to just read what has been written about in the past. Once again, welcome to Clusterville! Bryan |
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Title: Re: New to your board. Post by Not4Hire on Jun 18th, 2003, 8:54pm hey LocoSkull... between the *jokes* and the *static* you will find that the peeps here have a whole shitload of good information.... jonny said "go to the back of the boat and start rowin'..." ....good advice as far as rowin'... but I prefer that you go to the *front*....when the Captain (DJ) wants to waterski... well, the *propwash* get's a little ....ugly......heh ...just remember this little *mantra*..... This MOFO will NOT kill ME....I will make it thru AGAIN.....This MOFO will NOT kill ME....I will make it thru AGAIN.....This MOFO will NOT kill ME....I will make it thru AGAIN..... good luck bro.... hope you find your *key*.... check this out: http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm |
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Title: Re: New to your board. Post by don on Jun 18th, 2003, 9:11pm Quote:
That should be the first and last time you ever refer to the board as "yours". From here on in it is "ours" to you. You are one of us. Welcome aboard pal. Glad to see you found your way home. (There is a small fee though. Please send 5 vestal virgins to......Ah fuck it. That never works! ) |
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Title: Re: New to your board. Post by Linda_Howell on Jun 18th, 2003, 9:18pm And Don, our illustrious President is the ONLY one who knows what the word VESTAL means. LindaH |
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Title: Re: New to your board. Post by don on Jun 18th, 2003, 9:25pm Actually I don't but thanks for thinking of me. lmao |
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Title: Re: New to your board. Post by cootie on Jun 18th, 2003, 9:45pm Hey loco...welcome.....don't worry I won't wack ya with my oar....you found a good place here ! Send Don a box of multi color'd sparkly thongs......with days of the week on each one. ;D Thong doctor Pam ;) |
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Title: Re: New to your board. Post by Charlie on Jun 18th, 2003, 11:02pm Glad you have had some success Loco. Simon's letter is amazing. Try the technique but lose any notion that is has anything to do with meditation. It's entirely physical. This thing can now and then stop a cluster dead in a few seconds. I lived for that. It can almost always shorten them. Once you get it to work, you'll be hooked. It's always worth the try. Exercise is another way too but I find the technique more reliable. Good luck. Charlie |
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Title: Re: New to your board. Post by brain_cramps on Jun 19th, 2003, 12:28am Loco: Like is said so often: Sorry you had to look for us, but glad you found us. Now you are one of us. Sounds like you've been doing some reading already. Read, read, read and then read some more. As far as questions go... everyone here is willing to help as much as possible. PFDAN, grant 8) |
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Title: Re: New to your board. Post by catlind on Jun 19th, 2003, 6:38am Welcome aboard loco. Not much I can add to what everyone has already said. You have found a home where you can vent, rage, cry, rejoice, ask questions, and learn about your affliction. Not a better group of knowledgeable people out there than this group :) Cat |
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Title: Re: New to your board. Post by Donna on Jun 19th, 2003, 7:45am Very glad you found Clusterville. Welcome. Hopefully the Imitrex trick will help........and the next important thing is the O2. Read all about it. Ask any questions as none are stupid. If you're wondering about DJ, read his intro at the start of this site. And don, "vestal" isn't spelt right.....and it doesn't have a "t" in it. |
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Title: Re: New to your board. Post by BlackDog on Jun 19th, 2003, 10:25am Hi Loco, WELCOME to you. Glad to have you, but sorry you had to join the party. This place will help your life. Good luck buddy! Darren :) |
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Title: Re: New to your board. Post by don on Jun 19th, 2003, 1:03pm OK OK ! Skip the vestal (sp) virgin thing already. Any ole virgin will do. |
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Title: Re: New to your board. Post by hpulley on Jun 19th, 2003, 3:32pm I'm new to the board as well. I'd never heard of cluster headaches until today when I read an article in yahoo news that said some herbal remedies cancel out or even do bad things when taking conventional medication for things like cluster headaches. See http://story.news.yahoo.com/news?tmpl=story&cid=571&ncid=751&e=1&u=/nm/20030619/hl_nm/herbs_headaches_dc The line that caught my eye was, "Cluster headaches are marked by sudden, severe pain, often centered in one eye; these headaches come in waves, typically with several pain-free weeks in between. " Hey, that's me! And by coincidence I had two attacks today, both as usual in my right eye in the early morning. I've only had them for the past year or two and just rarely and for very short periods, thankfully. I'm 31 so I'm right in the 'correct' age to get this rare thing, I guess (after reading the info on this site, very helpful). With them happening in early morning and only for a short time they are not debilitating (yet), just annoying. I find by getting up and walking around they go away fairly quick (perhaps draining the blood from my head, not sure). Funny thing is I don't take herbal medications and I'm not taking any migraine or other headache medication (except for the occasional Advil/Motrin) so I'm not even sure why I read the article but I'm glad I did as a quick search on "cluster headaches" led me to this site. For those who do take herbals and conventional meds, perhaps you'll want to check that article if it hasn't already been posted. My CH's (funny to go from not knowing what they were to having an acronym in one day) seem to be seasonally (allergically) and stress triggered, perhaps with some alcohol influence thrown in. I enjoy a good scotch and don't usually find drinking to have an effect but I did have a few last night and it did make me wonder. May have to 'experiment' again tonight to see what happens. Thanks for creating the board. I know a heck of a lot more than I did a few hours ago! Harry from Guelph, Ontario, Canada |
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Title: Re: New to your board. Post by BobG on Jun 19th, 2003, 3:57pm Hello Harry, A couple of things you said.......... Quote:
We have people here from age 12 to in to their 60's. You're in the age group most are when these start but as far as "correct", I don't know what that is. Quote:
Probably has more to do with getting more oxygen than draining blood from your head. Quote:
Many report the cycles come on at certain times of the year. Always in the Fall or Summer or Winter or 2 out of the 4 seasons. Can't say if it has anything to do with allergies but doubt it. Quote:
Is it during the stressful period that the pain starts or is it after when you're winding down and relaxing or asleep? Quote:
Alcohol is a trigger for most clusterheads. It is absolutely forbidden during a cluster cycle. Welcome to the board. |
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Title: Re: New to your board. Post by hpulley on Jun 19th, 2003, 4:23pm Sorry, should have said I've started around the median. The big article from the main page says 30 is the median age. Didn't really mean to say 'correct'. Only occurs while I'm asleep and usually when stress has passed a while ago, never actually during a stressful situation and so far never starting while awake. As for allergies, I meant that it seems like the symptoms of allergies in a way, red eye to go with the pain, tearing, nose sniffles. Seems like my tearduct might not be working at the time too. Harry |
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Title: Re: New to your board. Post by BobG on Jun 19th, 2003, 4:32pm Many say that stress is a trigger. I've always believed it was lack of stress. There's not much stress during the REM sleep mode. That's my tag line. |
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Title: Re: New to your board. Post by catlind on Jun 19th, 2003, 5:35pm Welcome to the board Harry from Guelph. I used to live in Woodstock Ontario. Small world this is :) Sounds like you are a likely candidate for CH based on what you've told us. Does the pain last a very short time? (minutes) or 30 min. to 3 hours? CPH is a very similar thing to CH but is very short in comparison. Take the cluster quiz on the button to the left and get yourself to a neurologist as soon as possible. Oxygen will be the best benign treatment you can get, but you must use it correctly. Check the tips and tricks in how to deal with the beast. One very important note, as a general rule, narcotics will NOT do anything to help your headache and in the end can complicate things a great deal. Be very cautious when dealing in narcotic pain relievers. Cat |
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Title: Re: New to your board. Post by 2late on Jun 19th, 2003, 7:00pm WELCOME ABOARD TRAIN-HEAD!!! ................Jack |
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Title: Re: New to your board. Post by Locomotive_Skull on Jun 19th, 2003, 8:04pm Thanks for the warm welcome! You guys sound like a riot around here! I suspect it would be interesting to know some of you. About the ability to "postpone" an attack, is nothing really more than the way I breathe. Now I realize it must be something to do with oxygen. I take deep long breaths thru my mouth and blow out thru my nose. This does not work every time, but it is an option. It does come back however. Within a few hours most of the time. I noticed hpulley mentioning triggers. Alcohol is the only real trigger that I have narrowed down. I used to think it was everything from the weather, smoking, my teeth, my back, caffine, stress and so on. None of these have any link as to why I suffer from Clusterheadaches. That is a fact for me. Anything that can come on like it does, at perfect time every day, has nothing to do with the above. I was real big into sleeping patterns for a few years, convinced that it was my sleeping habits that brought them about. To this day I still can't take a nap on the couch or fall asleep in the lazy boy without waking up an hour or so later with a full-bore attack. I can't figure out why sleeping at strange times or out of pattern does this, but nonetheless, it does. I am gonna close for now and start skimming around the board. Once agian I would like to thank each and every one of you who have made it this far with C.H.'s. I really do know what it's like, and I am tired of the same routine involving my C.H.'s. I think it takes guts to not only discuss some of the more personal aspects of an attack, but guts to keep on keepin' on despite the presence of "the beast". |
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Title: Re: New to your board. Post by BlackDog on Jun 19th, 2003, 8:20pm on 06/19/03 at 20:04:47, Locomotive_Skull wrote:
Here! Here! Well said my friend. Thank you! Darren :) |
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Title: Re: New to your board. Post by Charlie on Jun 19th, 2003, 8:45pm Welcome Pulley. There is a lot of evidence here that many forms of exercise seem to help hasten the end of an attack. It has to be blood/O2 (which amounts to the same thing) is required elsewhere. Examples are violent exertion, cold water, standing barefoot on a cold floor-one instance anyway-and my circulatory technique. It must be that there is only so much to go around and it may lessen the pressure on the dilated vessel just slightly. Sort of like the saying that men have a brain and genetalia and only enough blood to run one at a time :D In any case, it helps a bit. Keep doing what you're doing and stick around. Charlie |
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Title: Re: New to your board. Post by hpulley on Jun 19th, 2003, 9:46pm I haven't timed them. They've only happened about 5 times. I don't think they last for long though, certainly don't feel like much more than 15 minutes, if that. What is CPH? Will have to read more. Funny thing is, I didn't really think of them as headaches as they're just in my right eye. At first I wondered if I'd punched myself in the eye while I was sleeping but now that it has happened a few times I will certainly bring it up with my doctor. Reading the symptoms, watering red eye, feeling like the tear duct to the nose isn't working, blocked nostril it certainly sounds like CH but I will get it checked out. At this point they go away fast enough on their own, if I can just get more exercise (need to anyways, don't we all) then that would be best. I prefer not to take medicines if I can help it (including ibuprofen) as they can do as much harm as good. So far tonight, one shot of scotch down and so far, so good. Will update in the morning. Harry |
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Title: Re: New to your board. Post by don on Jun 19th, 2003, 10:09pm Quote:
You cant. We are just scibbles on your monitor. We dont really exist. Best wishes Rod Serling |
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Title: Re: New to your board. Post by BlackDog on Jun 19th, 2003, 10:26pm Quote:
Don, Haven't had the pleasure yet, but i'm ROTFLMAO ;D Darren |
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Title: Re: New to your board. Post by Mastifflvr28 on Jun 20th, 2003, 12:13am Only Don is a figment of your imagination...the rest of us are real :) STFU Don. Welcome to the board loco head, Nappies are the absolute worst as well as the REM hits. I miss my nappies so bad whilst in cycle :( Mast |
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Title: Re: New to your board. Post by suzy617 on Jun 20th, 2003, 4:41am Hey Loco, just wanted to say hi and welcome! Suzy |
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Title: Re: New to your board. Post by hpulley on Jun 20th, 2003, 6:02am Well, 4oz of scotch last night and I'm fine as usual, just the slight 'normal' hangover there. Having my coffee as usual too. So... either I'm not the usual case or its something else. Will keep you posted. Harry |
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Title: Re: New to your board. Post by Mark C on Jun 20th, 2003, 2:22pm ;D |
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Title: Re: New to your board. Post by jonny on Jun 20th, 2003, 2:54pm on 06/19/03 at 22:26:22, BlackDog wrote:
Careful Dawg, Don has been known to travel in a short yellow bus with a band of cuban born chinesse circus midgets, they find out where a clusterhead lives and just roll up on in to stay for months. ...............................jonny ;D |
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Title: Re: New to your board. Post by stuey on Jun 20th, 2003, 2:57pm I don't have much to add Loco since everyone has shared their knowledge, but you did mention pills were useless. They usually are for me too but when I sorta feel it coming I pop Relpax or Imitrex 100 mg and sometimes i'm even successful. But you are right, the pills were definitely made with migraine sufferers in mind since there headaches grow over sometimes a matter of days. |
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Title: Re: New to your board. Post by Opus on Jun 20th, 2003, 3:21pm Locomotive Skull, I have never delayed a CH but at work I can sometimes stress them away, or as we call it abort them If you are having trouble with the meds you can try some of these while you are waiting to find the right one. http://www.clusterheadaches.org/resources/non_script_treat.htm Also make sure you start on a preventative also. For Locomotive Skull and Harry http://www.imgmag.org/images/sunny22/Gifs/Welcome.gif Opus/Paul |
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Title: Re: New to your board. Post by 2late on Jun 20th, 2003, 4:02pm on 06/19/03 at 22:09:59, don wrote:
WTF is a scibble? ..............Jack |
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Title: Re: New to your board. Post by Opus on Jun 20th, 2003, 4:15pm on 06/20/03 at 16:02:28, 2late wrote:
Isn't it the things that eat past time frames in the twilight zone? |
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Title: Re: New to your board. Post by eyes_afire on Jun 20th, 2003, 6:21pm Hpulley, CPH = Chronic Paroxysmal Hemicrania It is sometimes very hard to distinguish from CH. The attacks often last around 15 minutes or less. THE GOOD NEWS: Indomethacin is nearly 100% effective in controlling CPH. Maybe you should explore that. You have almost nothing to lose by trying Indomethacin. It is dirt cheap. Only problem is that it's rough on the stomach. --- Steve, one of many... |
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Title: Re: New to your board. Post by Sean_C on Jun 20th, 2003, 8:11pm Welcome Loco, Your not alone anymore ;D Read up on all the material here and you should get a good sense of direction of whats going on inside your head. There are alot of great people here to help you if you need it. Sean |
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