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Title: Just sayin HI and glad I found ya Post by archerB on May 9th, 2007, 8:45pm Hi, my name is Bill and I live in East Berlin, Pa. I've been a clusterhead for about 20+ years now(episodic) and am currenty in week 6 of this "episode" after 1 1/2 years PF. I am so glad ;;D to be here among people who REALLY understand what pain is :'( ! Anyway, have found alot of interesting stuff here and look foward to maybe getting to know a few of you guys (and gals ;). Take care for now and wish you Pf days (and Nites!!!) |
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Title: Re: Just sayin HI and glad I found ya Post by Rosybabe on May 9th, 2007, 8:52pm Hi Bill! http://i166.photobucket.com/albums/u89/pinkatoo/welcome.gif Nice to meet you! There is a lot of information here and in the O.U.C.H. site as well... Lots of nice people here ready to help, give advise and a shoulder to cry if need it.. Hope your cycle ends very soon and you will be pain free in no time!! |
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Title: Re: Just sayin HI and glad I found ya Post by LeLimey on May 10th, 2007, 2:12pm Hi Bill its nice to meet you. There are alot of good folk in the PA region so you'll be well set up for good local advice re doctors etc if you need it. What meds and dosages are you on? Lets see if there is anything we can suggest for you to discuss with your doctor that might help more. Welcome to the family! Helen |
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Title: Re: Just sayin HI and glad I found ya Post by Guiseppi on May 10th, 2007, 2:31pm Welcome to the board...and what Helen said. Let us know what you use and have used, what works and what didn't. Lot's of learning occurs here that way! Hoping you have the shortest cycle followed by a record breaking remission! Guiseppi |
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Title: Re: Just sayin HI and glad I found ya Post by ClusterChuck on May 10th, 2007, 4:46pm Hi, Bill! Welcome to the land of drain bamaged!!! Be very careful, as everyone here is nuts!!! (except myself, of course) (I am the only sane one here) Tell us more about yourself!! (All the others are damn nosey) Chuck |
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Title: Re: Just sayin HI and glad I found ya Post by archerB on May 10th, 2007, 7:22pm Hey folks, thanks for the warm welcome! As far as what meds...I use imitrex nasal when I can afford it. I have insurance, but according to them , I shouldn't have more than 8 attacks per month! So I make do with Red Bull and heating pad (on HIGH). Also walk(pace alot) . In the beginning, as most of us are, I was misdiagnosed. Tried alot of different meds; caffergot(wide awake pain??) , lithium, some sort of blood pressure med (cant remember name) even had a tooth pulled cause they saw "a tumor" on the roots. Past couple of years have had limited success with chiropractor, usually shortens the attack cycle, not working this time though (??) . Am looking into oxy, need to get doc to ok. Ice just twists the knife!! Always on right side, 90% at nite ranging lately 6-9KIP. Really bad last sat. nite..5 attacks between 10:00pm & 6:00 am. Had 2 MRI's done way back, ofcourse showed nothing. Just picked up some melatonin today; read here that its helpful to some. Anyone recommend a starting dosage? They are 3mg pills. I have an 8 year old daughter; sofar she shows no signs and I hope it stays that way! I would DIE if I somehow passed these onto her!!!! I have seen here that some peoples kids( as young as 5) have them. MAN! I sure feel sorry for them and their kid!!! How do you explain it to them?? Anyway, thanks for you interest. Look forward to chatting alot more. PFDAN!!! |
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Title: Re: Just sayin HI and glad I found ya Post by Guiseppi on May 10th, 2007, 9:08pm Obviously no guarantees but my daughters are 21 and 23 and thus far they have shown no inditia of CH. I'm with you it would break my heart if they came down with them. Really push for the oxygen, it's been a great abortive for me and for many others on the board. As far as the lithium, works great for me as a prevent, I use 1200 mg a day when on cycle, takes about 2 weeks to really kick in. While I'm waiting for the lithium to kick in I do a 2 week prednisone taper. I use cafergot in conjunction with my oxygen. If I use only oxygen the CH comes back 20 minutes after I turn the tank off. Now I pop a cafergot, start up the 02. 02 kills it, the cafergot keeps it away for about 12 hours. Funny thing about a lot of these meds, how you take them can have a big effect on how well they work. Hoping you find some relief soon, these things suck! Guiseppi |
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Title: Re: Just sayin HI and glad I found ya Post by Linda_Howell on May 10th, 2007, 9:32pm There aren't a lot of us who use heat when we are getting hit but if it works for you, more power to you. COLD is a vasoconstrictor and that is what we need to get rid of the pain. Imitrex and other drugs constrict the vessels and arteries. Personally I'd like to see you at least TRY a cold pack one time and see if that gives you more relief. Get one that doesn't get entirely hard and stays kind of mushy. (I just know one of the smart-a@@es around here will have something to comment on about that. lol) good luck. Linda |
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Title: Re: Just sayin HI and glad I found ya Post by archerB on May 10th, 2007, 9:50pm Thanks Linda, but I have tried cold and it just pisses the beast off! :o I guess my beast has to be different! |
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Title: Re: Just sayin HI and glad I found ya Post by Linda_Howell on May 10th, 2007, 10:03pm And that is the nature of the beast Bill. Contrariness. NOW....get thee to the oxygen. There is a link to the left here about 0xygen you should print out and take to your Doctor. It works for about 75% of us. It's safe, it's cheap and is one of the greatest abortives around. I have a feeling that since cold doesn't work for you, 02 might. The beast can't be contrary ALL the time. >:( |
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Title: Re: Just sayin HI and glad I found ya Post by archerB on May 10th, 2007, 10:20pm Thanks for the advice!!! I will do just that A.S.A.P. if not sooner!!! ;;D |
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Title: Re: Just sayin HI and glad I found ya Post by ClusterChuck on May 10th, 2007, 10:29pm on 05/10/07 at 21:32:56, Linda_Howell wrote:
Ummmmm .... Nah ... Too easy ... Chuck PS: I can't help it ... ... ... MUSHY, vs HARD ?? ?? ?? |
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Title: Re: Just sayin HI and glad I found ya Post by Guiseppi on May 10th, 2007, 11:44pm :-X :-X :-X I'm with Chuck.....too easy Linda!!! Guiseppi |
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Title: Re: Just sayin HI and glad I found ya Post by LeLimey on May 11th, 2007, 12:17am on 05/10/07 at 16:46:03, ClusterChuck wrote:
You??? SANE Chuckles?! The man has CH not a lobotomy ::) oh and when has something being "too easy" stopped you perverts before?! ::) Sheesh! |
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Title: Re: Just sayin HI and glad I found ya Post by George_J on May 11th, 2007, 1:46am on 05/10/07 at 19:22:00, archerB wrote:
Try not to be too concerned about this. It happens, but I don't think it happens to most of us. I have a 16 year old who shows no signs at all. For that matter, I'm the only one in my family--no history of it at all. Welcome to clusterville--keep reading and asking questions. The collective experience here is extensive. Best wishes, George |
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Title: Re: Just sayin HI and glad I found ya Post by Linda_Howell on May 11th, 2007, 12:33pm I just knew it would be Chuckles, the clown and his side-kick the Sarge who would be the one to comment on my choice of words. ::) |
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Title: Re: Just sayin HI and glad I found ya Post by archerB on May 12th, 2007, 11:53am Well, just started with meletonin 2 days ago...nite 6mgs and beast came once around 2 am...was 6 going to a 7 so I got up and ,to my surprise, went away in 6-7 mins???? went back to bed, and slept rest of nite, but did get alot of shadows After I got up, nothing else though. Next nite(last nite) NO BEAST!!!...Did up to 9mgs and slept ALL NITE [smiley=biggrin.gif]!! First decent nite sleep in month and a half....not getting hopes too high yet...Beastie might just be looking for another way around [smiley=confused.gif] PFDAN To all!! |
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