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Title: anyone have restless leg syndrome? Post by Roger_in_Australia on Jul 3rd, 2002, 10:29am Hi.. Just wondering if there might be a link between ch sufferers and the restless leg syndrome. I have RLS which is nothing major but i think worth investigating. details on RLS are at: http://www.rls.org/frames/home_frame.htm Roger |
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Title: Re: anyone have restless leg syndrome? Post by Becca on Jul 3rd, 2002, 1:32pm That's interesting - since you have asked I will reply that my husband, who has CH, also experiences the symptoms of RLS described on the link you posted. He also has sleep apnea, another disorder that often co-exists with CH. |
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Title: Re: anyone have restless leg syndrome? Post by forgetfulnot on Jul 3rd, 2002, 9:37pm Hey Roger, have the same condition but only in the middle one. :) Lee |
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Title: Re: anyone have restless leg syndrome? Post by Not4Hire on Jul 4th, 2002, 12:22am Lee....you are a BAD man......shame on ya...... ;D Roger: I tried to take the RLS test, but the page needs to take some schoolin' from DJ................. ::) Admittedly, strange shit happens in the night.......most of mine make me wanna shoot holes in my temple........my jumpy leg is a piece o' cake...... next? (looks like you guys got 150 people to show up for your .....uhhh......shindig?..... in Seattle though.....more than WE got signed up for OUR cluster in Vancouver, no?)...guess I'll shut up then...... 8) |
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Title: Re: anyone have restless leg syndrome? Post by Roger_in_Australia on Jul 4th, 2002, 12:39am so... are you saying you do have RLS? (you said "my jumpy leg is a piece o' cake") I have had it (RLS) since I was a kid, but only found out this year that it is an actual condition - I've had CH since 1994 and I'm now 33 your message is so unclear.. you say "most of mine make me wanna shoot holes in my temple" - your what makes you want to do this? your CH? and then what do you mean by "next?" and I have nothing to do with the web site on RLS.. I assume that you thought i did as you termed a "shindig" 'mine' Im trying to have a serious thread here... I want to know if there might be a connection between the 2 conditions. Please only post if you can speak sensibly and have any real information to offer. Thanks |
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Title: Re: anyone have restless leg syndrome? Post by Drk^Angel on Jul 4th, 2002, 1:09am Nope... Can't say that I have it... All of my legs are very well rested thank you. A little too rested one may think. PFDAN...................... Drk^Angel |
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Title: Re: anyone have restless leg syndrome? Post by Not4Hire on Jul 4th, 2002, 2:26pm Hey Roger/mate:.....lighten up a little ;D......there's lotsa smartasses on this board....I just happen to be more of an "ass" than "smart"....... To answer your questions:....(1) I don't think so....(2/3) Yes......(4) I have no idea...(5) "shindig" was a (poor) play on words: leg/shindig..... :P ...and it's sorta customary (as the buttons/info to the left indicate) to read up on the board before posting, give us a little information on your *Cluster Headache* symptoms, and as most of these renegades here will attest, I am neither "sensible" nor do I have much "real" information to offer. Y'all might take your own advice. 8) After all, you're DownUnder and maybe the blood is just rushing to your head........... Now read my tagline............no worries, eh? |
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Title: Re: anyone have restless leg syndrome? Post by Roger_in_Australia on Jul 4th, 2002, 7:12pm Hi, I didnt post for chit chat or to see how funny people can try to be. If you think all this is funny then please don't post in this thread. There are heaps of boards that you can use to practice trying to be funny on. I am only interested in the info.. I cant be bothered getting into the community thing and being all buddy buddy. Please respect how I feel. to me this is serious. |
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Title: Re: anyone have restless leg syndrome? Post by Ted on Jul 4th, 2002, 7:41pm Hi Roger. I think this is funny. Anyone else? If you want to find info on restless leg syndrome (ahhh, to have a leg that doesn't fall asleep on you...) do a search on this board on it. then do a search on the old board. Then scope out the OUCH library (plenty of non-funny stuff in there) and see if there is anything there. No chit chat needed for doing that and you won't have to worry about coming here and blatantly saying "I want information and I want it NOW!!!!! And I don't have time to be bothered with helping any of you if you ever need it in return!!!!" Like I said. I find this whole thread funny. Anyone else? Please let us know. :-) |
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Title: Re: anyone have restless leg syndrome? Post by Roger_in_Australia on Jul 4th, 2002, 7:52pm Why is this funny? if you had RLS you wouldnt find it funny. and I certainly dont find a CH funny. and I'm not demanding info. I just thought there might be an interesting connection, and so thought this would be a good place to find out. obviously i was wrong, so dont worry about it. I'll find another group of people to pose the idea to. Sorry for wasting your time. Thanks to Becca for not being stupid about it. |
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Title: Re: anyone have restless leg syndrome? Post by Linda_Howell on Jul 4th, 2002, 7:53pm I find it hilarious that Roger in Australia doesn't. He posted a serious thread. Didn't get a real answer cause this has nothing to do with Clusterheadaches, and now he's pissed. Hmmmmmm. lemme tel you some other things that have nothing to do with clusters... Phases of the moon. migraines. food. butterfly farts in Peru. Smoking. PMS. Frankly...Scarlett........I don't give a damn! I'm hurting here and wish this to stop. But lets be real. O.K.? Linda Howell who doesn't give a rats ass, if you slam me. |
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Title: Re: anyone have restless leg syndrome? Post by Roger_in_Australia on Jul 4th, 2002, 7:55pm Oh, yeah, and this was my first visit to the site, so thanks for making me feel welcome at my "new home on the internet!" dont bother replying because I wont be coming back to check. good bye |
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Title: Re: anyone have restless leg syndrome? Post by Ted on Jul 4th, 2002, 7:59pm Goodbye. :'( |
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Title: Re: anyone have restless leg syndrome? Post by GlendaB on Jul 4th, 2002, 8:04pm Hi Roger: :) I never knew it was a legit condition until now, but yes, I have been experiencing this now for a couple of years and wondered what the heck was wrong with me. It is a very uncomfortable feeling, you can't get rid of the feeling unless you are moving. I occasionally have the same feeling in my arms and body also. The only way I can describe it is a pulling sensation. Thanks for the info. |
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Title: Re: anyone have restless leg syndrome? Post by Roger_in_Australia on Jul 4th, 2002, 8:14pm wow.. and I was just about to leave! Thanks Glenda.. ok, so that's 3 people who have both of these rare conditions - i wonder if there is a connection. I'm off to see a neurologist on July 10, so I will put it to him.. and the way you describe it is exactly how I would, I get it in my calves late at night, and it feels like a pulling with an incredible urge to move the muscle, and when I do, it fixes it for about 30 seconds. I find it goes completely if I just walk, but that can be real annoying if you are tired and just want to get to sleep! for me it comes and goes.. I might get it for a month a year, and it isn't that bad a thing... just annoying... so i never sought treatment, and like you, I never thought it was a condition prior to finding the RLS site - I thought it was just me, then I wondered if there might be a connection between the 2 rare conditions... Thanks! |
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Title: Re: anyone have restless leg syndrome? Post by Ueli on Jul 4th, 2002, 8:18pm To answer your question: yes. - I think it would make no sense to name a syndrome that nobody suffered from. The best one to answer your question about a connection to CH would be our decrepit old Charlie, he looks like this: Now in response to your latest post: Who the hell do you think you are ? ? ? People on this board have written 170'000 posts and accumulated a vast amount knowledge and information. But instead searching this goldmine (using the search button above) you feel obliged to insult everybody. Oh, how do we like newbies that in their first few post think they have to tell us how to run this board. >:( If you don't like the people here, why aren't you looking for a board with the same amount of information but lacking every grain of humour (if you can find one)? Since I cannot be insulted by a slimy slug crossing my path, I did a search for you, click on the link: Google search results (http://www.google.com/search?as_q=&num=20&hl=en&ie=ISO-8859-1&btnG=Google+Search&as_epq=restless+leg&as_oq=&as_eq=&lr=&as_ft=i&as_filetype=&as_qdr=all&as_occt=any&as_dt=i&as_sitesearch=clusterheadaches.com&safe=images) But you'll have to read the listed posts yourself, I'm not gonna write a synopsis for you. :P |
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Title: Re: anyone have restless leg syndrome? Post by Linda_Howell on Jul 4th, 2002, 8:49pm My dear Ueli....... YES!!!!!! that is exactly what I wanted to say but as usual, you have said it much much better than I ever could. Thank you. Linda P.S. I never. repeat never !!!!!!!! insult anyone here. Unless.............. |
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Title: Re: anyone have restless leg syndrome? Post by Drk^Angel on Jul 5th, 2002, 12:46am on 07/04/02 at 19:55:23, Roger_in_Australia wrote:
Seems to me from your posts, you had no intention to make this board your "home" in the first place, so why should we feel sorry about defending ourselves, and our ways, against someone like you? The way I see it, if ya wanna be so full of yourself, find the information yourself. btw... Good posts Ted, Linda, and Ueli! I liked Lee's, and N4H's posts too... lol PFDAN..................... Drk^Angel |
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Title: Re: anyone have restless leg syndrome? Post by Slammy on Jul 5th, 2002, 2:19pm Did somebody say "Slam" ?? ;D Slammy ;D |
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Title: Re: anyone have restless leg syndrome? Post by kim on Jul 5th, 2002, 6:45pm Next time I kick the shit outa my hubby while trying to sleep I can refer him to RLS syndrome ;D Here I was all this time thinkin it was PMS :D |
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Title: Re: anyone have restless leg syndrome? Post by tommyD on Jul 5th, 2002, 6:46pm Thanks to Ueli for the link to search results. I'm a little interested in this because I have on occasion had symptoms that sound like RLS. Had them years before I ever had CH. I gather from the RLS website that many people have an occasional experience, but for some it disrupts their lives. Keeps 'em from sleeping, something I'm sure CH'ers can relate to. And I have to say that the urge to jump up and pace during a cluster attack is similar, though not identical, to the RLS symptoms I've had. Seems "connection?" is not a bad question. I don't mind writing a little synopsis of Ueli's search findings: Basically a few people say they've had RLS symptoms. Brenda asked if there might be a connection, and Richard S and Betty said they both had RLS; Richard thought there might be a connedtion, while Betty didn't think so. Jamy said she got RLS symptoms when her blood pressure dropped after taking verapimil. Nancyc had a reaction to a medication that ree said sounded like RLS. Jackie said she heard neurotonin was used to treat RLS. And that's about it. So is there a connection between RLS and Clusters? Nothing I found was very enlightening. The RLS website said about 8 percent of the population gets RLS symptoms. Pure chance would say many here on this board will have had RLS. Only if we did a survey and found that significantly more than eight percent of clusterheads also had RLS could we suspect a connection. Allowing this thread to be taken seriously and continued for a while, there's a chance many more clusterheads would have chimed in with reports of RLS. We may have learned something. I remember something similar happening with sleep apnea. Aside from RLS issues, Roger may have learnd new ways to help him beat the beast here. Reviewing this thread, I can't say I blame him for leaving. He found people making light of what to him was a serious question, and he didn't throw the first insult. Do you guys remember what the home page for this site says? "Welcome to your new home on the Internet..." And Ted? No, it's not funny. |
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Title: Re: anyone have restless leg syndrome? Post by nancyc on Jul 5th, 2002, 6:51pm Roger, i had RLS with some of the antiseizures i took...they gave me potassium for it..sorry i am late replying..i am alittle slow lately and doesnt have a thing to do with the fact i am a YOUNG grandmother..lol...take care...and good luck with your research..smiles,nancyc |
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Title: Re: anyone have restless leg syndrome? Post by Linda T on Jul 5th, 2002, 8:22pm Dear Roger: I've had RLS but only while I was pregnant. Didn't get CH then either. Good luck. Wishing you all PFDAN always, Linda T |
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Title: Re: anyone have restless leg syndrome? Post by clavers on Jul 8th, 2002, 8:13am Roger, I'm sorry that you have been vexed by some of the great puckering not a very nice persons that inhabit this board. I have RLS and it has appeared only in the past few years. I take potassium but it doesn't help very much. I have also wondered if there is any connection with CH. I hope that you don't abandon this site. Just remember, Australians are tough as nails. |
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Title: Re: anyone have restless leg syndrome? Post by Roger_in_Australia on Jul 8th, 2002, 9:25am Hi Clavers, thanks for your comments, and linda, and nancy and Tommy, and glenda for the emails! - yeah we're tough enuf not to be that bothered by childish comments. ;) I have done a little more research, and it seems that about 40% of CH sufferers also have RLS.... interesting... Thanks for all your help people! |
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Title: Re: anyone have restless leg syndrome? Post by Ted on Jul 8th, 2002, 9:30am That is interesting. Can you share with us the medical articles that show almost half of all clusterheads have RLS? Could be helpful. |
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Title: Re: anyone have restless leg syndrome? Post by clavers on Jul 8th, 2002, 9:36am Roger, I didn't write "great puckering not very nice persons", I instead refered to a particular portion of their lower anatomy. Apparently there is a niceness filter on the board. Oh well, never mind. |
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Title: Re: anyone have restless leg syndrome? Post by Bob P on Jul 8th, 2002, 10:46am I've done some research and have found that 97.625% of all clusterheads catch cold sometime in their life. Wonder if there's a connection? |
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Title: Re: anyone have restless leg syndrome? Post by Roger_in_Australia on Jul 8th, 2002, 1:31pm Bob, that would be pretty close to the same amount of non-clusterheads who catch colds, so no, there is no connection. |
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Title: Re: anyone have restless leg syndrome? Post by rick on Jul 8th, 2002, 1:36pm :)ALL WE ARE SAYYYYIIIING.... IS GIVE PEACE A CHANCE.... :) Welcome Roger in Australia! Sorry to hear you have CH. PLEASE take the time to read through our archives in order to educate yourself on this condition. Also, I am a member of this organization, and I find its website, particularly its library, to be quite useful: http://www.clusterheadaches.org/ This treatment was successful in disrupting my last cycle: http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1013709016 -R |
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Title: Re: anyone have restless leg syndrome? Post by Drk^Angel on Jul 8th, 2002, 2:17pm It the words of Rodney King... "Can't we all just get along?" Drk^Angel |
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Title: Re: anyone have restless leg syndrome? Post by nancyc on Jul 8th, 2002, 8:53pm Unfortunately, some people cant get along..why do newcomers have to be attacked...this pisses me off..and if you dont like this, excuse me for breathing...welcome roger....as long as you are breathing and are a person walking on GOD"S green earth (AND you are, bro..), I will welcome you..sorry for your rude awakening here at ch.com..smiles,nancyc ps now, YELL at me...cause personally, rite now, i dont give a shit... |
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Title: Re: anyone have restless leg syndrome? Post by GlendaB on Jul 8th, 2002, 9:21pm Right on! ;) I couldn't have said it better myself! |
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Title: Re: anyone have restless leg syndrome? Post by Ted on Jul 8th, 2002, 9:27pm I read this page twice and the only attack I can find is someone explaining why they failed at writing a$shole. Roger, some of us would still be interested in seeing the research of the 40% with RLS. |
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Title: Re: anyone have restless leg syndrome? Post by rick on Jul 8th, 2002, 10:06pm on 07/04/02 at 19:12:26, Roger_in_Australia wrote:
Roger, I do respect how you feel, but also ask that you do respect our "community thing" as well. My heart goes out to anyone who suffers from this disease, which is why I posted some information above which I think may help you deal with your situation. There are a lot of smart asses on this board, don't take them the wrong way, they are only trying to make you laugh. It's good medicine. It's part of how we get by in dealing with this disease. I'm sorry you took them the wrong way. Steve (Not4Hire) is a good guy, he meant no harm. There are a number of people who use this board on a daily basis with good hearts who would be willing to help you out. What makes those of us who use this board a community is that we give each other support as well as receive it. It's a two way street. If you would like to use the information that this site provides, along with its archives, you are welcome to do so. But to state that you are not interested in us, and that you only want us to answer your questions ...How would you react to that? It was after that post that this thread really started to get ugly. Why would you expect anyone to reach out and help you after that? But some of us did. We're here to take care of each other, help each other out, make each other laugh, answer each other's questions, and find a way to put this disease out of it's misery. We are a community and a family. We don't always get along perfectly. Does any family? I hope you find some help for your suffering, and I am sorry for what you are going through. But I do urge you to rethink your judgement of this community. I also ask that you realise that as a sufferer, through the relation of your own experiences on this board, you might be able to help someone besides yourself out with their pain one day. This is a rare and commonly misunderstood disease, and this board happens to be one of the greatest resources against it. We are not getting any closer to a cure or a consistently successful treatment by anyone taking this thing on alone. Peace, Rick |
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Title: Re: anyone have restless leg syndrome? Post by Roger_in_Australia on Jul 8th, 2002, 10:14pm The 'Little more research' I did was right here on this thread, Ted. With the CH sufferers I know personally, and the ones who responded in the positive here it is at the moment about 40% of the total of sufferers I have encountered. I know 3 personally, including my sister who doesnt have RLS. Thank you CRnnurse :) and thanks to everyone else who emailed me - it is good to know that most people here are nice people! - but then all Clusterheads are nice people really arent they? :) |
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Title: Dear Nancy Post by Ueli on Jul 8th, 2002, 10:16pm Nancy, please be fair not only to newcomers, but to the oldies too. Assume, a guy comes up to you in the street and wants to know the time. Now, it costs nothing to tell somebody the time, but nevertheless I expect to be asked in a civilized manner. For me it makes a big difference if he says "Tell me what time it is!!" or "Hello, could you tell me the time?", together with a friendly smile. (When I learned English 40 years ago, there was the word 'please', but that is no longer in use :(). But some newbies come with an attitude of "Hey, tell me what I want to know" and don't take the slightest effort to look up what already has been written about it. Of course, they are too lazy to select in the profile whether they are male or female (maybe DJ should add a 3rd button, selected by default, saying "rude SOB"). Where they come from, a short history of their CH, etc. is apparently nobody elses business. Nobody gets slammed here on first sight. But people who already in their second post start to complain about others and think they must teach us all how to run the message board lose the goodwill of most and only our kind Nancy will continue to pat their shoulder. Keep smiling Nancy, but don't expect your tolerance from everybody. Ueli ::) |
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Title: Re: anyone have restless leg syndrome? Post by Roger_in_Australia on Jul 8th, 2002, 10:25pm Hi Rick, That was never how I set out to be. I didnt even think of that until I got what I considered childish, rude and insulting comments. It was then that I decided I didnt want to be part of the community, if that was what it was like. OF COURSE i didnt just want answers, I was just trying to cut out the chaff from what i considered important. I apologise to anyone who thought I was being rude. I guess I should have spoken differently. I guess it is just evidence of the difficulty of entering a group who all know eachother well. One doesnt quite know the ropes, so to speak. Sorry. Roger |
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Title: Re: anyone have restless leg syndrome? Post by Ted on Jul 8th, 2002, 10:51pm You've got a few people here replying positively for RLS and one who claimed to get it when on medication) and there are 1531 members on this board. I don't see how you came to the number of 40%. Can you explain that so we can see how you got your percentage? |
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Title: Re: anyone have restless leg syndrome? Post by nancyc on Jul 8th, 2002, 10:52pm I think Roger, who i have never met or talked to before answered most of your questions...i will answer mine NOW....first of all, when i first came to the board and even before, I personally thought no one suffered like me...i had CHS...and I KNEW The pain...i did not know that you did....but in TIME, I LEARNED...my dear UELI, who i dearly love with all my heart along with all the oldtimers here...cause i guess i am one by now...YES, i have a tender heart...I am a nurse..i was trained to have that ...but I am also , a CLUSTERHEAD..and i was also, trained to OVERLOOK some words a newcomer may post and realize .Ueli, you have to realize, this guy may have never talked to another clusterhead even..I have talked to and TOUCHED and KISSED and HUGGED another clusterhead....I KNOW YOU GUYS...I TRUST YOU TO LOVE ME...HE does not know what I KNOW and YOU KNOW..and ...PAIN IS PAIN..and SO FOLKS express it DIFFERENTLY....can we NOT BE TOLERANT OF EACH OTHER...so friggin what if the guy said "I cant be bothered getting into the community thing and being all buddy buddy. Please respect how I feel. to me this is serious".....Maybe his life is falling apart from chs when he made this statement...GET A LIFE and forgive and forget folks..WE ARE ALL IN THIS TOGETHER....i love each and every one of you but this is ridiculous to pick this guy's apart word for word..I know i have wanted to die from this disease..all he did was ask a question and maybe half way offend someone...i am out of here...smiles,nancyc |
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Title: Re: anyone have restless leg syndrome? Post by rick on Jul 8th, 2002, 11:10pm Roger, Dude, I'd give you a hug, but you're in Australia. ::) ;DRick |
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Title: Re: anyone have restless leg syndrome? Post by Roger_in_Australia on Jul 8th, 2002, 11:19pm come on Ted, you MUST be more intelligent than that! 40% of the people I know combined with the ones who have replied in this thread. It's NOT out of ALL the members... geesh! how would I know what the replies would be of all the members on this board!!?? this is a lot of effort... I dont have the energy to keep this up right now. I suppose next, Ted will add up all the responses and show that it is actually a different percentage or something.. yeah, well, I said about 40% and combined with the people I know personally. I dont care anymore ted, I really dont. My god, It was just a simple query to see if there was any link... I kind of regret asking in the first place! Roger |
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Title: Re: anyone have restless leg syndrome? Post by Not4Hire on Jul 8th, 2002, 11:32pm HEY Roger me 2.....bud....I didn't mean to aaaaaatttttacccccccckkk ya....you are WELCOME here.......but don't take our ROUGH LOVe the wrong way......I got my ass kicked here b4 I learned the rules....read my posts(as trivial as they are 4 the most part) but this beast is a MOFO.........he don't take no prisoners....but we WILL take ya to OUR heart ......if ya let us.............. ;D ;D ;D and if that don't soothe yer ruffled feathers..........good luck, pard |
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Title: Re: anyone have restless leg syndrome? Post by rick on Jul 8th, 2002, 11:36pm All y'all, Nancy is right. I remember stumbling in here not to long ago, with my life falling apart, wondering what the fuck was going on with my life. I was mess. My sense of humor... well, it came and went, at its best. Since then, I've learned to laugh at myself a little more, and accept my situation, as terrible as it is. And I thank EVERYONE here for helping me get to this point. But we have to ease up on people a little more. Ueli, like you said, if someone is rude when they ask you the time, they are being a jackass. But it's a little different when someone approaches you saying "OH MY GOD HELP ME, I'M HAVING NUCLEAR REACTIONS INSIDE MY SKULL". In that situation, manners aren't always the first thing on the person's mind. I think the proper approach in this instance is to say "Whoa, calm down buddy, one thing at a time. We know, we've been there, here's where you should get started..." and then point out to them that they should cruise the archives, the OUCH research library, etc. Maybe they missed the sign at the door because they were an absolute mess from what the disease was doing to their life and by the time they got here, details were beginning to escape them. Please cut these people some slack. A little more patience will take us all a lot farther. When I first came here, all I wanted was to find a way for the pain in my head to stop, immediately. That was all I wanted in life. But through the people on this board, I began to understand the reality of this disease, and I have become more patient as a result. That didn't happen over night. As I calmed down, it sunk in that I wasn't alone. And most importantly, Roger said he was sorry. Peace to all, -Rick |
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Title: Re: anyone have restless leg syndrome? Post by Pinkfloyd on Jul 8th, 2002, 11:41pm on 07/08/02 at 22:51:14, Ted wrote:
Maybe some of you should take a close look at the numbers you stated.....out of 1531 members...a FEW post. I wonder why? I also suffer from RLS but it didn't appear until AFTER my clusters were stopped with shrooms. I wouldn't be at all surprised at a 40% number. I don't believe there is any connection other than the medications many people use to treat their clusters. If you check out http://www.rls.org/frames/home_frame.htm those that are interested might get some valuable information. I'll be posting my one year report on another thread for anyone interested in the shroom treatment. Pink (the other one) |
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Title: Re: anyone have restless leg syndrome? Post by Ted on Jul 8th, 2002, 11:49pm Roger, I don't know why you get so upset about being asked to justify the numbers you've claimed for RLS and CH. I have no qualms with you claiming 40% of the clusterheads you personally know also have RLS. I'll give you the benefit of the doubt on this. But how are you including the people who replied here in your statistics? How did you come to the conclusion that only 60% of us don't have RLS because a few people responded positively. I don't understand how you did that math, even with just who replied. I also don't understand why you're running away from the question of explaining how you got your numbers. Not4Hire mentioned learning the rules here or having a rough time of it. The only rough time you're getting is being asked for a simple explanation of your numbers. And you're being asked that becaus another rule here is you don't throw out BS "facts" for any reason other than merely being mistaken (and then it's usally wise to let us know you were mistaken). Want to know why? Because many of us here DO do research into possible causes, parallels, medications, etc... and when you purposely send us down the wrong path for some ego trip of just wanting to be right you waste our time. And you lose credibility. Now, please explain how you got to 40% from people posting in this thread (how many did you figure don't have RLS and do and how did you figure that, in other words?) or have the decency to admit you were mistaken. Or, at the very least, keep a civil tongue when being asked a legitimate question of how you came to your conclusions. As it stands now you haven't been able to accomplish any of these. |
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Title: Re: anyone have restless leg syndrome? Post by nancyc on Jul 8th, 2002, 11:58pm Shut up TED....so the guy misquoted some figures..so friggin what...if he is having chs, maybe he is not thinking Quite Clear...maybe?????....anyway, Bob W, you mentioned people on meds having RLS, i was one of them...and antiseizures are well known for this..i was put on potassium for RLS when i was on high doses of them...as far as the number of people registered here, guess what, some of them probably have two or three names.LOL..mine is NANCYC....wish others would use their names though...makes it very confusing..smiles, nancyc |
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Title: Re: anyone have restless leg syndrome? Post by Drk^Angel on Jul 9th, 2002, 12:03am Appology accepted. Now take off your coat, sit down, put your feet up, and stay a while. Want a beer? Dunno if ya like Bud, but it's all I've got. Welcome to the family bro! PFDAN.................... Drk^Angel |
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Title: Re: anyone have restless leg syndrome? Post by Ted on Jul 9th, 2002, 12:05am Here's a suggestion Nancy, you shut up for once. Misquoted figures? He came up with the figures and then restated them. But, apparently, someone's not thinking quite clear. Smiles. |
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Title: Re: anyone have restless leg syndrome? Post by Drk^Angel on Jul 9th, 2002, 12:10am Okay... That's it... Someone get the fire hose... There's a fire in the thread, and it needs put out... Just need to cool things off a bit. Nancy... Ted... Everyone else, including me... Shut Up! Thank you. PFDAN................... Drk^Angel |
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Title: Re: anyone have restless leg syndrome? Post by rick on Jul 9th, 2002, 12:40am on 07/08/02 at 23:58:35, nancyc wrote:
Ted, What's your real name? ???R |
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Title: Re: anyone have restless leg syndrome? Post by Roger_in_Australia on Jul 9th, 2002, 1:59am Just for ted: I think I counted 6 people who said no, and 3 who said they did. thats 33.3% I know 3 people including myself who get CH's, out of us 3 there is one who doesnt get RLS so there is 67.7% Now, I realise these are small numbers, and is all irrelevant due to that fact, but I was just taking a rough view at the time. I'm so sorry, Ted, that I used the word research, and Im sorry that you are so pedantic about facts and figures, so I'll re-phrase it for you: "It seems to me, based on the doped up on codeine impression that I got, from keeping a rough, non-certifiable count purely in my cluster clouded head, that about 40% - give or take 10% due to the low numbers in the count - of CH sufferers also have experienced either now or in the past, some symptoms of RLS" now, please... Roger |
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Title: Re: anyone have restless leg syndrome? Post by Jackie_L. on Jul 9th, 2002, 4:10am It never cesses to amaze me how people on this board say I love you and then continue to chew each other up with hurtful words, inuendo's, rudeness etc... Sad that a new ch'er to the board had to become a part of this because of "wording" or "quotes" others didn't like or agree with... GET OVER IT...MOVE ON... GROW UP...Life is to precious to spend time fighting and agrueing over small stuff... if this person has ch...then they have just as much right here as anyone... Hats off to you Nancy...you said it well... Jackie |
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Title: Re: anyone have restless leg syndrome? Post by Ueli on Jul 9th, 2002, 7:53am on 07/08/02 at 09:25:04, Roger_in_Australia wrote:
(The rest of the post is not worth repeating) on 07/08/02 at 09:30:03, Ted wrote:
Note this: Roger put out a statement that many believed was some fact to be found somewhere in the literature. Ted's polite request for further references was completely ignored by Roger, but instead he/she continued to complain about others. I must agree entirely with Teds last two posts, including the suggestion to Nancy. This is no longer a case of welcoming a newbie or not, but an extremely severe case of misinformation and spreading of compleat misleading data. Why the hell did it take Roger such a long time to explain where his/her 40% came from? And how comes he/she lets us believe for a long time this shoddy makeshift statistics based of half a dozen badly selected cases had a scientific background? I'm extremely pissed off ! Ueli >:( |
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Title: Re: anyone have restless leg syndrome? Post by Roger_in_Australia on Jul 9th, 2002, 8:12am "an extremely severe case of misinformation and spreading of compleat misleading data." now, THAT's funny. Roger |
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Title: Re: anyone have restless leg syndrome? Post by Roger_in_Australia on Jul 9th, 2002, 8:21am OH MY GOOOOOODDDDDDD!!!!!! CH MAY NOT BE CONNECTED TO RLS!!!!!!!!! AAAHHHHRRRGGHHH!!! AND I THOUGHT THERE WAS A CONNECTION ALL THAT TIME!! bloody drama queen. be pissed off .. be happy.. be whatever you choose to be... I dont care.. Im sick of this. |
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Title: Re: anyone have restless leg syndrome? Post by Bob P on Jul 9th, 2002, 9:01am So what's the connection? I didn't see much at the RLS site that would correlate with the hypthalamus, trigeminal nerve or serotonin. Does you RLS come in clusters like your headaches? BTW Roger, you're not sick of this, you're loving this. That's why you keep saying you've had enough but keep coming back for more. It's your way of getting the attention you crave. We've had others who make their entrance the same way. Back to the subject - if you really want to do some "research" on this, start looking into the physiological connection between RLS and CH. That's where you may find your answer. |
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Title: Re: anyone have restless leg syndrome? Post by Roger_in_Australia on Jul 9th, 2002, 9:21am Who the hell do you think you are telling me what I feel and how I think??! Trust me Bobby, Attention is the LAST thing i crave :) - you would know how funny that is if you knew me. what I am sick of is having to defend everything I say. It seems now, I even have to defend saying that I am sick of this.. hmmm... what are you running out of things to have a go at me about? I come back because people ask me not to leave. PS. yes, RLS does come in clusters. I get it every night for a few months then it goes for a few months. |
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Title: Re: anyone have restless leg syndrome? Post by Margi on Jul 9th, 2002, 9:40am OK, can we take this another direction please? Roger, what do YOU think the connection is between RLS and clusters? I think it's kinda interesting actually, because both afflictions really COULD be neurological in origin. Cluster headaches have been connected to lots of other side symptoms and conditions, such as sleep apnea (watch Bob and Ted go at it if you mention that! LOL), candida overgrowth, allergies, etc. It's all really the chicken and the egg theory though, but it is kinda cool to see how many folks have other ailments in common. I think we're kinda throwing the baby out with the bathwater if we leave ANY stone unturned. (Babies really hate that, too.) |
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Title: Re: anyone have restless leg syndrome? Post by Roger_in_Australia on Jul 9th, 2002, 9:54am well, I think they could be connected via a nervous link. it has been commonly believed that CH is a vascular thing, but new research has shown this may not be the case, but rather the blood vessel changes follow faulty reactions in nerve cells, rather than causing them. so someone suffering from RLS, may also suffer from CH for the same reason. Personally i think it is worth studying. "RLS may be the result of another condition, which, when present, worsens the underlying RLS. This is called secondary RLS. During pregnancy, particularly during the last few months, up to 15% of women develop RLS. After delivery, their symptoms often vanish. Anemia and low levels of iron in the blood are associated with symptoms of RLS, as are chronic conditions such as peripheral neuropathy (damage to the nerves in the hands and feet) and kidney failure. Recent literature also points toward an association between RLS and symptoms of attention-deficit hyperactivity disorder. If you have no family history of RLS and no underlying or associated conditions causing the disorder, your RLS is said to be idiopathic, meaning without a known cause. " so faulty nerve cells or damaged nerve cells may be the cause of the 2 conditions and if the same damage or fault causes both, then that may be an avenue to pursue. If damaged nerve cells are a genetic thing, and the damage can occur anywhere in the body, then it is possible to assume that it is true that CH's are caused by damaged nerve cells as the new research shows, particulary if a large proportion of CH sufferers also have the other symptom of damaged nerve cells, being RLS. |
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Title: Re: anyone have restless leg syndrome? Post by Bob P on Jul 9th, 2002, 10:11am Now it's my turn to ask you to share your sources. Can you point me to the new research that shows that CH is caused by damaged nerve cells? Thank you in advance. Margi - I think Ted and I have come to agreement on apnea. It does not cause CH however it may trigger individual attacks. BTW Roger, I'll say anything I want to anyone at any time. I'm too old and gnarley to give a crapola anymore. Your, how dare you, response tells me I pretty much hit the nail on the head though. |
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Title: Re: anyone have restless leg syndrome? Post by Margi on Jul 9th, 2002, 10:16am Dang, Bob - you and Ted have agreed on the Sleep Apnea thing? Bummer. It was always fun watchin you two dance. Sorry for the interruption - I just had to express my displeasure and the discontinuance of the S.A. fun. Here's Bob's question again for you, Roger: "Now it's my turn to ask you to share your sources. Can you point me to the new research that shows that CH is caused by damaged nerve cells? Thank you in advance. " |
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Title: Re: anyone have restless leg syndrome? Post by Ted on Jul 9th, 2002, 10:35am on 07/09/02 at 00:40:57, rick wrote:
My real name? Theodore. But I prefer "Ted" to that. And what is your real name, Rick? Nancy? Add me to the list of people who would like to see the research about the damaged nerve cells. |
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Title: Re: anyone have restless leg syndrome? Post by Roger_in_Australia on Jul 9th, 2002, 11:10am I either followed a link from this site or the ouch site http://www.timesonline.co.uk/printFriendly/0,,1-57-329724,00.html Roger |
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Title: Re: anyone have restless leg syndrome? Post by ken_b on Jul 9th, 2002, 11:50am for those of you who dont know me im not a newcomer. i dont post much. i sit back and watch what goes on here.i have been around a long time. haveing the word vet by my name dont mean nothing to me. but i cant sit here and watch a good friend get slamed!! for those of you who dont know nancy very well she is our boards peace maker. she has a heart that is made out of gold. nancy really does care about everyone that comes in here!!! she is that kind of person.i dont understand why yall wont to tell her to shut up when all she is doing is trying to be helpfull. is that not why were here for? i have meet a lot of the (old timers) in person they are a very loveing and careing bunch of people. the people i have meet have a place in my heart. we dont allways agree but that dont give us reason to beat each other up. and you dont see them do it very often. most of what you see is the newcomer doing it. if we are going to help each other than lets start doing it. i dont post on the board i pm people or call them on the phone. if i have offend anyone im sorry! but nancy dont need this. she was just trying to help. thanks for hearing me out. ken |
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Title: Re: anyone have restless leg syndrome? Post by rick on Jul 9th, 2002, 12:04pm Theo, Nancyc is one of the alternate names I post under here, along with Kristi and Dannyboy. My guess is that at least 40% of my schizophrenic personalities also suffer from CH, Dannyboy not being one of them. What do you think? ;DR |
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Title: Re: anyone have restless leg syndrome? Post by Drk^Angel on Jul 9th, 2002, 12:11pm Is it just me, or is there like half a dozen different discussions goin' on in this thread? PFDAN....................... Drk^Angel P.S. Shut up! |
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Title: Re: anyone have restless leg syndrome? Post by Ted on Jul 9th, 2002, 11:47pm Rich, Hi. I'm sorry but you implied something. Something that I've been dealing with for long enough. Do you have a set of balls? Then ask me right here. You want to propagate rumors and just talk shit? That's an option too. But don't go on the attack and then pull back expecting nothing. Gotta question? Ask. Got an accusation? Make it. Got a set of balls? Use them. Oh, that goes for anyone else who wants to talk behind my back. Smiles again. |
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Title: Re: anyone have restless leg syndrome? Post by Drk^Angel on Jul 10th, 2002, 12:29am FIRE!!!! Evacuate the thread! Women and illegitimate children born from the union of two clusterhead men(?) first! RUN! Drk^Angel |
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Title: Re: anyone have restless leg syndrome? Post by rick on Jul 10th, 2002, 2:05am Ted, What the HELL are you talking about ??? ??? ???? Here I am very lost... I was only joking from the start, man. Sorry if I ruffled your feathers. I was trying to make you laugh or something, no attack, nothing meant to be vicious. You were getting all bent out of shape, I was trying to extinguish this thread with some kind of humor. I'm sorry if I touched on something sore with you, I had no clue. We have bigger fish to fry here, please save your energy for the real enemy... Take er easy, -R |
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Title: Re: anyone have restless leg syndrome? Post by Charlie on Jul 10th, 2002, 8:36am Well, I came in here late......very late. From this perspective, Roger....you gotta admit: This thread is definitely funny. In fact, it's hilarious. :o Keep it up kids and Roger--Try to look at the big picture. You've been iniated by Ted and the rest of us. A little fun, and it was meant as that, is good Really fun-loving old Charlie 8) |
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Title: Re: anyone have restless leg syndrome? Post by Ted on Jul 10th, 2002, 2:52pm Rick, I was going to apologize to you by e-mail but since I was an a$shole to you in public I should apologize in front of the same people. It did strike me wrong because of some old fights around here but that was probably before you came around and didn't realize this. I want to underline the fact (and with this new board I actually can)that I am sincerely and deeply sorry for coming at you like that. |
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Title: Re: anyone have restless leg syndrome? Post by Bob P on Jul 10th, 2002, 2:56pm I ain't doing no group hugs with you dorks! (but I can probably get hub to do one with ya). Just watch that the little shit don't start humping your restless leg! |
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Title: Re: anyone have restless leg syndrome? Post by rick on Jul 10th, 2002, 10:06pm Ted, NOOOO worries man, it's all good. Just a miscommunication. Sorry, I should have made it clearer that I was just playin'. A lot of times you type something you interpret one way, while somebody else might read it and hear something totally different. I think if we learned anything from this thread, it's that Not4Hire and I need to work on our sense of timing when it comes to comedy... Clusterheadaches.com.....Feel the love!!!!! Thanks bro. Peace, -Rick |
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Title: Re: anyone have restless leg syndrome? Post by dannyboy on Jul 11th, 2002, 7:29am Rodger, The % of CHers that smoke is higher than for a group of non CH.ers, while the % of CHers that are arseholes is excatly equal. You must be a major arsehole if you ended up in a fight with Ted and Ueli who are arguably the biggest arseholes on this board. Next to BobP that is, and these other two girls who both call themselves hub. Ask DJ to set up an electronic survey for you on RLS and cluster. That way we'll get as close to the real numbers as we can on this. DJ is the boss and he'll do it for you no problem, I'm sure. Just mail him dude, there may be something in what you say. We already know that some clusters have a majour muscle tension input so you don't have to prove more of a link if RLS has muscular implications. Mail DJ dude. I'm going back to being Rick now. This is my last post. Dannyboy |
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Title: Re: anyone have restless leg syndrome? Post by gtarman on Jul 11th, 2002, 10:24am Irrelevant as it first seemed, I'll have to report that I too have RLS, and now that I think about it, it started roughly the same time as my clusters, approx 5 yrs ago. Hits me in the evening while I'm couch-potato-ing, but doesn't bother me after going to bed. Can't possibly see the connection, but then, the brainiacs haven't figured Clusterhead out yet, have they? Hey, Rog was just asking a simple question. Some'a you guys are kinda anal-retentive. Whats the problem, got a headache? |
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Title: Re: anyone have restless leg syndrome? Post by dannyboy on Jul 11th, 2002, 10:45am play it sam ... |
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Title: Re: anyone have restless leg syndrome? Post by BobG on Jul 11th, 2002, 11:09am Are the Cubs really as good as they seem to be? Or is it just the Prozac? 77 replies and read 887 times! RLS brings out the best in us all. Goodbye..............for now. I'm going to Vegas. |
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Title: Re: anyone have restless leg syndrome? Post by Not4Hire on Jul 12th, 2002, 12:00am hey Rog.....at the risk of (continuing) the "chitchat"..........IS THAT YER *current* mugshot?.........y'all all don't look in yer 30's........feel free to flame me.......I regularly wear Kevlar(tm) shorts......... ;D ;D (BTW....don't have any friends....but I took the poll........RLS peeps still got more conventioneers than CHers...like I said in my FIRST post.....duckin' 'n' runnin') ********this post was HEAVILY edited by the THOUGHT POLICE******* |
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Title: Re: anyone have restless leg syndrome? Post by rick on Jul 12th, 2002, 1:10am Rodger, If you so chose not to continue on as a part of this community after this majour eight-mile thread you have begun, we will hunt you down and bring you back here. ;D You follow Super 12 rugby also? Dannyboy |
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Title: Re: anyone have restless leg syndrome? Post by Roger_in_Australia on Jul 12th, 2002, 1:29am Hey.. after this many replies, I guess im here to stay - that's why i filled in the details. Yeah thats a pretty recent pic of me... last year or so. why... do i look younger?? you better say yes!! :) football... nah, not into football at all. Roger |
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Title: Re: anyone have restless leg syndrome? Post by nancyc on Jul 12th, 2002, 7:18am Was gonna take the poll...clicked on the link and all i got was the results...no poll... :( |
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Title: Re: anyone have restless leg syndrome? Post by Roger_in_Australia on Jul 12th, 2002, 8:17am oops... there are a couple of bugs with it... will fix tomorrow.... php isnt my thing... |
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Title: Re: anyone have restless leg syndrome? Post by Roger_in_Australia on Jul 12th, 2002, 11:43am ok.. got some help from a friend, and the poll is feeling heaps better now.. http://www.mediatwo.com.au/rlspoll/ roger |
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Title: Re: anyone have restless leg syndrome? Post by Ted on Jul 12th, 2002, 11:57am on 07/12/02 at 01:10:19, rick wrote:
Now THAT was funny! -Rick |
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Title: Re: anyone have restless leg syndrome? Post by rick on Jul 12th, 2002, 2:21pm on 07/12/02 at 11:57:00, Ted wrote:
I also forgot to mention that I am Ted...these voices in my head.. they just won't agree with each other...what's a southern gal to do?...LOL Nancy |
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Title: Re: anyone have restless leg syndrome? Post by sharisse on Jul 13th, 2002, 2:13am Well I was going to try and keep my nose clean by staying out of this one but... LindaT - I didn't have clusters while I was pregnant either. Must be hormonal. Roger - I also had similar symptoms of RLS but not sure that was it. It happened to me in my early to mid 30's then just stopped. sharisse |
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Title: Re: anyone have restless leg syndrome? Post by ken_b on Jul 14th, 2002, 1:28am come on now! i know yall are not going to stop till we have reached 100; just dont seem right to let it die being so close? lmaorotf pain free to everyone. ken |
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Title: Re: anyone have restless leg syndrome? Post by BobG on Jul 14th, 2002, 8:17pm Hey ken_b Here's number 89 on the way to one hundred! |
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Title: Re: anyone have restless leg syndrome? Post by Roger_in_Australia on Jul 17th, 2002, 8:20am Current Poll results: People who get cluster headaches and RLS - 43.8% 7 say they do and 9 say they dont. I guess the figure is a bit low right now, only 16 voters, but still, its a lot different to 8% which is the percentage of the general population with RLS |
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Title: Re: anyone have restless leg syndrome? Post by BILL_L on Jul 17th, 2002, 10:15pm Only ten more to hit 100....so i will make this 91...LOL..smiles,nancyc |
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Title: Re: anyone have restless leg syndrome? Post by ken_b on Jul 18th, 2002, 2:12am lmmfao way to go nancy. we are getting closer to 100 now! ken |
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Title: Re: anyone have restless leg syndrome? Post by Roger_in_Australia on Jul 18th, 2002, 2:53am yep! |
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Title: Re: anyone have restless leg syndrome? Post by forgetfulnot on Jul 25th, 2002, 1:26am "Restless Legs Syndrome cause creepy-crawly sensations in the limbs, primary in the legs (but occasionally in the arms and trunk). The sensations have the following features Occur during periods of inactivity Become more severe at night Are tied to an overwhelming urge to move the limb Are relieved by movement of the limb Often cause difficulty staying or falling asleep, which lead to feelings of daytime tiredness or fatigue May cause involuntarily jerking of the limbs during sleep and sometimes during wakefulness" This still sounds like my middle leg, so do I vote yes or no on the poll? :o Lee |
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Title: Re: anyone have restless leg syndrome? Post by oringkid on Jul 31st, 2002, 3:07pm I get this, what I call frantic, feeling in my legs and lower back that keeps me from sleeping and the only thing that helps it is movement. Could that be RLS? I don't get it often and it seems I get it after a cycle of CH has wrapped up. I have often thought it might be RLS or related to it but since I get it in my lower back, I thought it might not be. Sherry |
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Title: Re: anyone have restless leg syndrome? Post by ChristineL on Jul 31st, 2002, 5:31pm Try bananas - I should own stock in the Chiquita company. They helped with my RLS and leg cramps. They may, and I use the term may strongly, even help a little with your CH's. Chris |
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Title: Re: anyone have restless leg syndrome? Post by Drk^Angel on Jul 31st, 2002, 5:54pm 97 replies... Drk^Angel |
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Title: Re: anyone have restless leg syndrome? Post by Roger_in_Australia on Jul 31st, 2002, 7:28pm Hi Sherry, Yep, that sounds like RLS Did you add a yes to the poll at http://www.mediatwo.com.au/rlspoll Roger |
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Title: Re: anyone have restless leg syndrome? Post by Drk^Angel on Jul 31st, 2002, 10:40pm 99 replies... Who wants #100? Drk^Angel |
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Title: Re: anyone have restless leg syndrome? Post by Roger_in_Australia on Jul 31st, 2002, 10:46pm MEEEEEEEEEEEEEE! |
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Title: Re: anyone have restless leg syndrome? Post by Drk^Angel on Jul 31st, 2002, 10:51pm LOL! Drk^Angel |
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Title: Re: anyone have restless leg syndrome? Post by Roger_in_Australia on Aug 1st, 2002, 12:14am Heh, those repeats were a mistake actually, I'd hit post and it came up with a 404 error, so i hit back and tried again, 3 times before I gave up... looks like they all worked anyhow.. so I deleted some :) R |
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Title: Re: anyone have restless leg syndrome? Post by ken_b on Aug 1st, 2002, 1:26am lmaorotf hell of a way to get 100!! pain free to everybody. |
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Title: Re: anyone have restless leg syndrome? Post by oringkid on Aug 4th, 2002, 10:33am Yes, Roger, I added my yes to the poll. Now can you tell me what to do to alleviate that feeling? It absolutely makes me crazy. I cannot sleep when I have that. Sherry |
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Title: Re: anyone have restless leg syndrome? Post by Roger_in_Australia on Aug 4th, 2002, 10:49am The only thing i have found is to get up and walk around.. a few minutes of walking and standing can get rid of it for me.. i know i don't get it while i'm walking, as the muscle is being used. It seems only when it is relaxed that it starts geeting that feeling. Usually after walking for a while, when I lie back down, it doesn't return, at least not in the short period it takes to get to sleep. I know it can be incredibly annoying to do this, when all you want to do is sleep, but that's what works for me. |
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