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Title: Help needed - All replys welcome Post by AlfieAtkins on Apr 28th, 2003, 11:17am :'(Ive suffered clusters for 8 years, tried all kinds of tablets and by the time they get in my system, im at the near end of an attack. Ive been on Imagran injections for 4 years and they do stop the current attack within minutes, but dont stop the next. My doctor gave me unlimited prescriptions, but unfortunately has now retired. My new doctor has cut my prescription down to 2 jabs a day, and im currently suffering 6 attacks and bad they are, the worst ive ever had. Nights are the worst, i dare go asleep for the fear of Freddy Kruger getting me!Can anyone suggest any anti-cluster medications that work for you. All replys are appreciated, and will be looked in to. We are all suffering and need to stick together!!!!!!!! Alfie |
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Title: Re: Help needed - All replys welcome Post by Big_Dan on Apr 28th, 2003, 11:22am Predinsone workes well for me... and I've heard that Depakote does too, but it fucked my stomache up, so I cant take it anymore... ... I use Imitrex as an abortive, but I only get two per 24 hours.... -Big Dan |
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Title: Re: Help needed - All replys welcome Post by nancyann on Apr 28th, 2003, 11:30am I wish I could help. I definently understand your pain. They won't prescribe the imitrex and nothing works for me. I wish you luck and will keep you in my prayers. |
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Title: Re: Help needed - All replys welcome Post by Mr.Happy on Apr 28th, 2003, 11:39am Alf, Welcome, good to meet you, grab a seat and an oar, blah blah blah....... You have a lot of _Required Reading_ starting with the buttons to the left, and another excursion over to the OUCH site (http://www.clusterheadaches.org). Imitrex is fine and dandy for aborting a headache, but there are many other options, including the all new, top secret Mystery Treatment (http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm). While you're reading, it sounds like you want to pay attention to ~Anything~ in the preventative categories, like Verapamil, et.al. Clean those reading glasses, and git to it! :) Myopically yours, RJ |
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Title: Re: Help needed - All replys welcome Post by andy on Apr 28th, 2003, 12:18pm Alfie, i tried the imitrex tabs before and they didnt work for me either. But i never took one before going to sleep to see if it would help keep me from being woken up with a 10. Imitrex shots work for me. Quote:
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Title: Re: Help needed - All replys welcome Post by Mikey on Apr 28th, 2003, 12:51pm Welcome aboard Alfie. Just like Happy said do all the reading that you can do by pushing the buttons to the left of the screen. You'll find that different meds work different for many people. Some of the same old regular meds like Verapamil and lithium and depakote, topamax, sansert, and a lot others in this category, are called preventive meds. Some do not work for any of us and some, they work wonders for. Then there's the abortive category of meds like pure Oxygen,Imitrex Injections, Imitrex Nasal spray, maxalt Injections and tabs, and the list goes on. So do your research at the left of the screen and come to the board with any and all questions you may have, and usaually there's always somebody that can help you with your questions. So stick around, DON'T leave, we are a bunch of Clusterheads searching for some of the same answers as you are! Don't be afraid to jump into a subject either, i promise we don't bite, except for maybe Jonny! Mikey, ;D |
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Title: : Help needed - All replys welcome Post by ZAIRA on Apr 28th, 2003, 12:58pm Nice too meet you Alfie and WELCOME HOME. I’m also CH sufferer and I’m afraid to read that you’re bad. :'( :'( :'( If I can help, I take lithium an verapamil. I take lithium’s tablet 300 gr and then 1200 mg, plus verapamil until max 960 mg. My neurologist tells that the quantity of meds I take is hight, but I have to take them otherwise the cluster doesn’t leave me. Imitrex, Lidocaine and O2 during the attacks >:(. Stay with us... the share of CH with other sufferer has been very important. Good luck from Italy, Zaira :-/ |
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Title: Re: Help needed - All replys welcome Post by firebrix on Apr 28th, 2003, 3:01pm Greetings and Welcome Alfie Atkins! O X Y G E N might help you more than you imagine! Wishing you PFDAN firebrix |
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Title: Re: Help needed - All replys welcome Post by Karla on Apr 28th, 2003, 3:21pm Get a perscription for oxygen. If that doesn't work for you. Try some strong painkillers like stadol ns or percacet or vicodin. They won't take the pain away completley but they may knock a kip10 down to a kip8 so you can at least think a little bit while you are getting hit. |
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Title: Re: Help needed - All replys welcome Post by cathy on Apr 28th, 2003, 3:30pm Hi Alfie....just wanted to say HI and WELCOME ABOARD.. Cathy :) |
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Title: Re: Help needed - All replys welcome Post by cbolony on Apr 28th, 2003, 3:33pm Quote:
Did you ever use the imitrex tip on the left side of the board.I get 4-5 CH aday in cycle and the imitrex tip saves me all the time.I am also on verapamil 240 mgs .2x a day |
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Title: Re: Help needed - All replys welcome Post by AlfieAtkins on Apr 28th, 2003, 3:44pm cheers mate, but im new on here today, and when you say imitrex tip on the left side of the board, where do i find that exactly?(left hand side of the board) |
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Title: Re: Help needed - All replys welcome Post by Wendy the Brit on Apr 28th, 2003, 3:49pm Hello Alfie!!! :-* Welcome to the family of fellow sufferers. You will get help, information, support and advice,abuse and potty mouths here, all in equal measure. What a fantastically English name you have! Do you have Brit blood by any chance? Wendy the Brit |
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Title: Re: Help needed - All replys welcome Post by vig on Apr 28th, 2003, 3:51pm The tips are at the left side of the home page, look for Imitrex tip. I think it amounted to cutting your prescriptions into smaller pieces so they last longer. Are they still effective in smaller doses? my experience says yes. |
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Title: Re: Help needed - All replys welcome Post by AlfieAtkins on Apr 28th, 2003, 4:44pm Got u vig, its gotta be worth a try,,,anything to cain that devil bastard eh,,,many thanks |
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Title: Re: Help needed - All replys welcome Post by cathy on Apr 28th, 2003, 4:49pm Wendy Alfie is from the UK and will be at the UK convention.....you'll recognise him believe me he'll stand out from the crowd...thats right isn't it Alfie...lol ;D Cathy |
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Title: Re: Help needed - All replys welcome Post by AlfieAtkins on Apr 28th, 2003, 5:00pm You got it cath, follow me with the mop yeh,lol |
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Title: Re: Help needed - All replys welcome Post by Wendy the Brit on Apr 28th, 2003, 5:09pm Oh, you two know each other. Does that make me still the only one who won't know anyone? Wend |
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Title: Re: Help needed - All replys welcome Post by AlfieAtkins on Apr 28th, 2003, 5:21pm Just met u both same time |
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Title: Re: Help needed - All replys welcome Post by Wendy the Brit on Apr 28th, 2003, 5:28pm Bizarre coincidence Alfie but when I officially became a clusterhead last year, I called it Freddy Kruger as well (see post history from last year) all that afraid to go into REM sleep stuff. Bizarre because Freddy is American culture, not British. |
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Title: Re: Help needed - All replys welcome Post by AlfieAtkins on Apr 28th, 2003, 5:37pm Suppose were all special in a way, just a shame its an evil way, Im gonna beat the war, but the battle is another story, thank you all for your help. ;) |
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Title: Re: Help needed - All replys welcome Post by Not4Hire on Apr 28th, 2003, 5:47pm dubya the Bee: ...me thinks 'e hasn't got a pot of glue... ;) and ...vig....well, He’s dropped a bloody orson......innit? ;D ;D |
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Title: Re: Help needed - All replys welcome Post by cathy on Apr 28th, 2003, 5:51pm Not4Hire LOL....I think you're a top gertie getana....have you got a pot of glue...??? Cathy |
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Title: Re: Help needed - All replys welcome Post by paul_b on Apr 28th, 2003, 6:11pm I is an O2 man. Have it near your bed and as soon as you awake with an attack, hit the mask. |
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Title: Re: Help needed - All replys welcome Post by Drk^Angel on Apr 28th, 2003, 10:41pm Welcome to the board! Sorry that the beast has filled your cranium with kerosene, and is using you eye sockets as lanterns. Welcome to the family! Good luck! PFDAN.................................. Drk^Angel |
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Title: Re: Help needed - All replys welcome Post by Charlie on Apr 28th, 2003, 10:51pm Welcome Alfie. Lots of good info over here and over there. Damn. I told you Cathy that I'm not good at rhyming slang....Poor Yank you know. Charlie |
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Title: Re: Help needed - All replys welcome Post by AlfieAtkins on Apr 29th, 2003, 2:29am Just tried the imitrex tip, and it worked a trest,,,thank you people out there, i learnt more on my first nite on here last nite, than ive learnt in 8 years of doctors, specialists, consultants, and neurologists, DJ, U IS THE DADDY,nice 1 pal, c u all later ;D :o 8) |
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Title: Re: Help needed - All replys welcome Post by Charlie on Apr 29th, 2003, 5:38am Glad the Imitrex idea worked. Here is one that probably saved my sanity at one time. It sounds strange but it can work. The price is right though and Linda says to try it when not getting too badly hit. It worked about 75 to 80 percent for me. Good luck: 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: Help needed - All replys welcome Post by Turts on Apr 29th, 2003, 6:45am Gday Alf, Welcome, hope that this site serves you as well as it has me. Found that the support from this site is as good as any med on the market. However, I have found that Imigran nasal spray and Naramig are both effective abbortives if taken in time. And remember " It can't rain all the time". Unless of course your from Melbourne or the U.K..... lol 8) |
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Title: Re: Help needed - All replys welcome Post by AlfieAtkins on Apr 29th, 2003, 6:59am This also works for me too charlie, i trap the vein in my right wrist (on the side below the thumb), using two fingers from my left, not blocking totaly, but just enough to feel the vein and hand throb, it does either ease or stop an attack, unfortunately, a 6 or above will still kick in, but all the same its a drug free way of sometimes coping, All the best to you my freind! Anything to keep the demon at bay eh!!!Alfie |
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Title: Re: Help needed - All replys welcome Post by AlfieAtkins on Apr 29th, 2003, 7:03am G'DAY Turts, Have tried naramig to no avail but im hoping to get some nasal spray and CO2 soon, got an appointment with my neurologist on the 9th of may, fingers and toe's crossed eh! and yeh, its raining in the uk,,,and in me head,lol |
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Title: Re: Help needed - All replys welcome Post by Mark C on Apr 29th, 2003, 7:23am Howdy AA, I can't add much to what the rest of the nuthouse has to say.....or cockneyspeak as I say, Just welcome. Charlie, don't feel bad, I ain't got it either, but I can speak "Pig-Latin" pretty darn good! Fluent Hillbilly (http://www.humorcolumnist.com/truthtn.htm) , Mark |
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Title: Re: Help needed - All replys welcome Post by Wendy the Brit on Apr 29th, 2003, 9:33am Alfie You suggest taking CO2 , not one of your best ideas!!!!! Oxygen tends to abort CH, Carbon monoxide tends to abort your life :) W the B |
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Title: Re: Help needed - All replys welcome Post by Not4Hire on Apr 29th, 2003, 9:51am ...actually co2 is carbon dioxide but the point is well taken..... OXYGEN is *o2*..... carbon monoxide is *CO*....and N2O is nitrous oxide.... also NOT recommended fer CH..... gaseously yours.....N4H ;D |
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Title: Re: Help needed - All replys welcome Post by Wendy the Brit on Apr 29th, 2003, 10:01am Of course Silly me Carbon monoxide would only have one oxygen molecule not 2 wouldn't it. I vaguely remember my chemistry from donkey's years ago! Breathing in carbon dioxide I do know about as I smoke 40 a day! |
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Title: Re: Help needed - All replys welcome Post by cathy on Apr 29th, 2003, 10:50am on 04/29/03 at 10:01:36, Wendy the Brit wrote:
Is it possible to smoke 40 carbon dioxides in a day...just wondered.. ::) Charlie.....me old fruit gum, I know you haven't got a scooby doo what Im talking about, but rest assured it's all jackson's most of the time...and whatever else I think your a real lemon squeezer....turtle dove ya... :-* Cathy :) |
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Title: Re: Help needed - All replys welcome Post by Drk^Angel on Apr 29th, 2003, 4:04pm Personally... I prefer C2H6O... PFDAN............................ Drk^Angel |
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Title: Re: Help needed - All replys welcome Post by AlfieAtkins on Apr 29th, 2003, 11:08pm Im a clusterhead with insomnia, even worse :o(5am) |
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Title: Re: Help needed - All replys welcome Post by cootie on Apr 29th, 2003, 11:24pm Hey Alfie....wait a minute why does that name ring a bell....song or movie blast from the past......ok where was I.......oh I remember.......jus wanted ta say hi to ya ! I can't speak that Brit talk but I sure can yibber-yabber Pam |
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Title: Re: Help needed - All replys welcome Post by AlfieAtkins on Apr 30th, 2003, 12:11am Hiya pam, Alfie was a film by Micheal Cain (70s), we also had a cartoon here in the 80s called Alfie Atkins (young kid up to mischief) lol TAKE CARE |
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Title: Re: Help needed - All replys welcome Post by AlfieAtkins on Apr 30th, 2003, 12:12am HONK ;) |
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Title: Re: Help needed - All replys welcome Post by Wendy the Brit on Apr 30th, 2003, 3:39am Dark Angel Now you are really asking me to dredge up school chemistry- Here we go: 2 Carbons, 6 Hydrogens and an oxygen - errr..... Oh yes! Got it! Now that's what I call wasting time well in chemistry lessons. Shame the pure stuff is poisonous really! Wendy |
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Title: Re: Help needed - All replys welcome Post by cootie on Apr 30th, 2003, 9:18am HONK back at cha Alfiekin's ;D......hey what about them nitrix balloons.......weeeeeeeeeeeeeeeeeeee.........bad bad bad !!!! Inhaled a balloon one time and fell down and embarrassed myself Pam |
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Title: Re: Help needed - All replys welcome Post by Wendy the Brit on Apr 30th, 2003, 12:51pm Show me and Cathy your Honk(s) at the convention please Alfie? It isn't a scorpion by any chance is it? |
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Title: Re: Help needed - All replys welcome Post by AlfieAtkins on Apr 30th, 2003, 1:34pm LOL, What, on our first date, Your not a time waster r u wend, and no scorpions |
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