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Title: 2005 Lets get it started knowing... Post by Ree on Jan 1st, 2005, 11:51am Who is in cycle right now? Who is hurting? This is what we are here for... Let's show our support for our Cluster family? Are you in cycle, or in pain chronic? Got meds, need meds... taking new meds? Got support... wouldnt it be great if like AA you pain sufferers had sponsors to vent to maybe someone out of cycle right now and of course the same sex... a cluster buddy... ???? I think this is a cool idea... and STFU Don!!! No pickin on the Reester... I know sometimes I act like a cruise director ... Get up and exercise your ideas as a citizen of Clusterville!!!~~(I am such a dink) Ree |
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Title: Re: 2005 Lets get it started knowing... Post by don on Jan 1st, 2005, 11:53am Quote:
Quote:
No reply neccesary. 8) |
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Title: Re: 2005 Lets get it started knowing... Post by Ree on Jan 1st, 2005, 12:16pm Ok I fell into that one... How is your head (on your shoulders) Don???? ree |
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Title: Re: 2005 Lets get it started knowing... Post by nani on Jan 1st, 2005, 12:25pm That's a good idea, Ree. I wouldn't want anyone to feel limited to one buddy, though. Just so everyone knows...I am available to be supportive anytime. I am so thankful you all have been here to be supportive of me when I need it. :-* |
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Title: Re: 2005 Lets get it started knowing... Post by don on Jan 1st, 2005, 12:33pm Quote:
Yes it is. Been there for quite some time now. |
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Title: Re: 2005 Lets get it started knowing... Post by Sean_C on Jan 1st, 2005, 12:49pm Don, she meant she wasn't talking about your little head LMMFAO [smiley=laugh.gif] How little is it Don??????? |
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Title: Re: 2005 Lets get it started knowing... Post by john_d on Jan 1st, 2005, 1:25pm Thanks Ree. I am in cycle, and support from the message board is always nice, though for some reason now that I am actually getting hit I feel less and less like posting here. Isn't it supposed to be the opposite? Oh well. It sounds like a good idea though. |
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Title: Re: 2005 Lets get it started knowing... Post by Sean_C on Jan 1st, 2005, 1:30pm on 01/01/05 at 13:25:13, john_d wrote:
I get that way too John, its because I'm usually exhausted from my bouts with the beast, or I'm afraid the puter screen is gonna set it off, or I'm in fear of the next hit etc etc etc. Life with him is definately life altering in many ways. Stay around though, lots of people here go unsupported and need hope. Just being around helps them alot. Sean..................... |
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Title: Re: 2005 Lets get it started knowing... Post by john_d on Jan 1st, 2005, 1:36pm yep, i'm exhausted, but I am gonna go do yoga- for real, and then go run. I'm fricken tense all over. |
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Title: Re: 2005 Lets get it started knowing... Post by Tim_Z on Jan 1st, 2005, 1:51pm If anyone needs to vent, or just get something off of their mind let er rip. Tim |
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Title: Re: 2005 Lets get it started knowing... Post by Ree on Jan 1st, 2005, 2:03pm trying to get the visual of you doing yoga John!!!! a big dude like you that is so cool... and so good for you... I hope it helps... We are all here for you and completely understand when you cant post... just know it will end... and knowing that is half the battle... love to you Ree come on people i really want to know who is hurting.., share, vent and let us know.........love ree |
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Title: Re: 2005 Lets get it started knowing... Post by john_d on Jan 1st, 2005, 2:52pm on 01/01/05 at 14:03:15, Ree wrote:
lol, sometimes I don't realize how big I am but my size becomes very apparant when doing yoga and I am stretched from one side of a big-ass room to the next. It's not a pretty site either, but it is an almost perfect exercise. |
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Title: Re: 2005 Lets get it started knowing... Post by Ree on Jan 1st, 2005, 9:58pm ok... who else is in cycle... is everyone mad at me or something........... we should all know who is hurting... I will bump this thread til you tell me.......... ree |
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Title: Re: 2005 Lets get it started knowing... Post by nani on Jan 1st, 2005, 10:08pm I'm chronic...does that count? Lately I've been having a little bit of an easier time of things. Mostly shadows...a couple of k6's a day. But they only last about 20 -30 minutes. I could use some shingles vibes....haven't seen a dr yet, but I only have a few real ones...most are still just dry painful bumps. The hurt comes in waves...weird. Almost like CH in a way. Waves that come on suddenly, ramp really high and then stop. But it keeps me from needing pain meds. I really think the Neurontin I take is affecting it (them?). |
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Title: Re: 2005 Lets get it started knowing... Post by Sean_C on Jan 1st, 2005, 10:09pm Just shadows for me Ree, nothing unusual, just here for support if someone needs it, and to piss of the others inbetween. ;;D Love back at ya :-* Sean............................. ;;D |
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Title: Re: 2005 Lets get it started knowing... Post by Grandma_Sweet_Boy on Jan 1st, 2005, 10:11pm on 01/01/05 at 21:58:32, Ree wrote:
Ree - no one could ever possibly be mad at you for anything. I'm out of cycle but when it's my turn, I'm gonna be here lookin for you and your special vibes and hugs. Carol |
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Title: Re: 2005 Lets get it started knowing... Post by BarbaraD on Jan 1st, 2005, 10:24pm I'm chronic and getting hit right now big time. The damn weather won't quit changing and I swear the barometer going up and down is when mine hit the worst. Good idea Ree.... Clusterbuddy. I have a couple that I vent to cause I don't like to whine on the board. I've always e-mailed or Pmed anyone I thought was in real trouble. But you're right -- this board is for support and that's what we should be giving each other. Well a little pissing off in between.... that just adds a little laugh to the whole thing. :D Hugs BD |
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Title: Re: 2005 Lets get it started knowing... Post by Sean_C on Jan 1st, 2005, 11:10pm Bump |
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Title: Re: 2005 Lets get it started knowing... Post by vig on Jan 1st, 2005, 11:18pm bump ;;D |
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Title: Re: 2005 Lets get it started knowing... Post by Jonny on Jan 1st, 2005, 11:22pm on 01/01/05 at 22:11:14, Grandma_Sweet_Boy wrote:
Carol's right Ree.......By doing so one would risk death by boot!! ;;D |
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Title: Re: 2005 Lets get it started knowing... Post by Langa on Jan 1st, 2005, 11:24pm Been episodic for 26 years. My last cycle, I thought, ended in October (4 month cycle), but since have had a couple of low-level clusters, ice-pick headaches and last week a kip-10 out of nowhere. Been shadowing since then; shadowing right now actually. Getting welder's oxygen on Monday in case it happens again. I have no idea if these are isolated "events" or am starting another cycle right after the last. Usually my cycles start June and go for about 8 weeks, this year I have no clue what's going on. Next choice of treatment for me is the shrooms. I do have a clusterbuddy and my very special friend Nani has been a great support. We were actually raised in the same neighborhood...it's a small world. ;;D Thanks Ree...I think a sponsorship program is a great idea. ;) Langa |
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Title: Re: 2005 Lets get it started knowing... Post by nani on Jan 1st, 2005, 11:27pm Quote:
How was dancing at the Copa, chica? ;) :-* |
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Title: Re: 2005 Lets get it started knowing... Post by Langa on Jan 1st, 2005, 11:30pm on 01/01/05 at 23:27:19, nani wrote:
No dancing... :P Was called at the last minute to sing at my friends club. I do that once a week for extra money. Never been kissed by so many drunk strangers in my life once the clock hit midnight... ::) I read yours went well and you actually got to drink! ;;D Langa |
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Title: Re: 2005 Lets get it started knowing... Post by Langa on Jan 1st, 2005, 11:32pm By the way, Redd gave me a great recipe being that she used to sing too...Brandy with honey and lemon...boy was my voice smooooooooth after that... ;;D Thanks again Redd! Langa |
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Title: Re: 2005 Lets get it started knowing... Post by nani on Jan 1st, 2005, 11:33pm Quote:
Were they cute, at least? Yeah...I had a few margaritas. Enjoyed it... but ended up staying up all night with the effen shingles. My normal shadows are nothing compared to these right now. |
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Title: Re: 2005 Lets get it started knowing... Post by Langa on Jan 1st, 2005, 11:37pm A few of them were ;;D, and some stranger licked my ear... :-/ What's up with that? [smiley=laugh.gif] So the shingles are full-blown now huh? Sorry girl, feel better... Langa |
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Title: Re: 2005 Lets get it started knowing... Post by unsolved1 on Jan 1st, 2005, 11:52pm Episodic for 12 years Chronic for the past 51 months now I'm DOOMED !! (http://www.clustertown.com/doomed.htm) :-/ Unsolved :-/ |
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Title: Re: 2005 Lets get it started knowing... Post by nani on Jan 1st, 2005, 11:54pm [smiley=hug.gif] (((((Michael))))) |
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Title: Re: 2005 Lets get it started knowing... Post by Langa on Jan 1st, 2005, 11:55pm on 01/01/05 at 23:52:57, unsolved1 wrote:
Sorry Unsolved...51 months? No PF time at all? You get hit every day? :( Read your poem... :( Hang in there and I hope this year is a much better year for you... Langa |
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Title: Re: 2005 Lets get it started knowing... Post by the_old_man on Jan 2nd, 2005, 6:15am I'm in cycle now. Week 10. Every night. 3 k8-9 hits. Cycle usually lasts about 6 weeks. Don't know what's going on this time. Just shadows right now. Already had my scheduled 3 for the night. The Old Man |
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Title: Re: 2005 Lets get it started knowing... Post by Svenn on Jan 2nd, 2005, 6:39am Alive and the regularly daily shadows here Still cronic but feeling great Svenn |
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Title: Re: 2005 Lets get it started knowing... Post by OneEyeBlind on Jan 2nd, 2005, 8:13am Not in cycle ..... just hanging out. I'm hoping I'm on the 99 year cycle plan ! |
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Title: Re: 2005 Lets get it started knowing... Post by BarbaraD on Jan 2nd, 2005, 8:39am One - hope you are on the 99 year plan also. That would be a great new year..... Hugs BD |
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Title: Re: 2005 Lets get it started knowing... Post by Sean_C on Jan 2nd, 2005, 9:06am on 01/01/05 at 23:37:02, Langa wrote:
Happy New Year Langa [smiley=lick.gif] Sean............... ;;D |
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Title: Re: 2005 Lets get it started knowing... Post by Renee on Jan 2nd, 2005, 9:18am 22 years of battling the beast, 8 years chronic. Started the alternative treatment and just went 2 weeks totally pf, not a shadow, jolt or anything. Got hit early New Year's Eve and dosed so I'm pf again! Slowly I'll extend the dosing periods. I wish I could share this pf time with all. It is amazing! I'm here for ya if ya need an ear, always. Happy New Year, Renee |
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Title: Re: 2005 Lets get it started knowing... Post by unsolved1 on Jan 2nd, 2005, 9:47am The only time I get a break from the multiple, severe, daily headaches is when I'm in the hospital getting DHE, steriods, or Histamine. Steriods (Like 60-100mg/day of Prednisone) will keep the beast away for awhile or 2mg of DHE/day will kepp the beast away. Unsolved :-/ |
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Title: Re: 2005 Lets get it started knowing... Post by OneEyeBlind on Jan 2nd, 2005, 10:16am ((((((((Unsolved))))))))))))), hopefully this year will bring a solution for you. |
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Title: Re: 2005 Lets get it started knowing... Post by Langa on Jan 2nd, 2005, 10:27am on 01/02/05 at 09:06:48, Sean_C wrote:
Damn, two ear-licks in the new year...how'd I get so lucky? :-/ Happy New Year to you too Sean. ;) Langa |
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Title: Re: 2005 Lets get it started knowing... Post by Redd715 on Jan 2nd, 2005, 11:17am on 01/01/05 at 23:32:46, Langa wrote:
Glad it worked for ya hun... |
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Title: Re: 2005 Lets get it started knowing... Post by Bethany1 on Jan 2nd, 2005, 11:22am Just having shadows, no major hits --just hanging out for entertainment purposes and support for others. |
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Title: Re: 2005 Lets get it started knowing... Post by kissmyglass on Jan 2nd, 2005, 12:15pm Chronic & almost always under attack...lithium is becoming less & less effective..probably why I have such a wonderful attitude :)...neuro sent me (against my will) to see the gamma Knife guy at Yale last week. fuck that. Hope you all have a PF 2005 Kev |
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Title: Re: 2005 Lets get it started knowing... Post by nani on Jan 2nd, 2005, 12:18pm Quote:
against your will? |
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Title: Re: 2005 Lets get it started knowing... Post by kissmyglass on Jan 2nd, 2005, 12:18pm hey Unsolved....I know you can't take Trex any monre but what about Lithium? Don't work for you? |
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Title: Re: 2005 Lets get it started knowing... Post by Jonny on Jan 2nd, 2005, 12:21pm on 01/02/05 at 12:18:28, kissmyglass wrote:
Sprinkle it with Verap....works for me ;;D |
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Title: Re: 2005 Lets get it started knowing... Post by nani on Jan 2nd, 2005, 12:23pm Quote:
Yep...lithium with a sprinkle of verap and a pinch of Neurontin...that's my recipe. :) |
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Title: Re: 2005 Lets get it started knowing... Post by kissmyglass on Jan 2nd, 2005, 12:31pm Well Nani, i don't believe gamma knife actually works all that well for us Clusterheads. I also have no ins. so I had to pay $450 for this doc to tell me what I already knew...how it works, what they do blah blah blah. The doc was very nice and wants to come to the convention!!! i didn't even know where it was this year so I have to get back to him. I have a friend who is a neuro surgeon. His specialty is tumors & TN (vascular decompression). Him & his boys are getting a Gamma knife machine early this year. i could be his first victim if i want. He knows I am much more interested in deep brain stimulation...we're working on that. sorry for rambling... Kev |
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Title: Re: 2005 Lets get it started knowing... Post by kissmyglass on Jan 2nd, 2005, 12:35pm I do take verap too....480mg. (couldn't tolerate 720) and 900 Lith. How high can you go with Lithium?? My blood levels are very good.... |
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Title: Re: 2005 Lets get it started knowing... Post by nani on Jan 2nd, 2005, 12:46pm I don't think you should have to spend money when you don't think it's going to work anyway. Just MHO. Hopefully, you can get some relief...somehow. Good luck, hun. :) I don't know about increasing the lith...I'm guessing if your levels are good, then it's probably OK. My problem with lith is that it keeps your mood stable so you don't experience manic type "highs"...shoot, if I get any "lower" I'll be in a coma. |
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Title: Re: 2005 Lets get it started knowing... Post by Jonny on Jan 2nd, 2005, 12:49pm Ive seen folks post that they go up to 1200 on the Lith, thats double what I take...and more than I want ;;D |
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Title: Re: 2005 Lets get it started knowing... Post by Sean_C on Jan 2nd, 2005, 12:54pm on 01/02/05 at 12:49:12, Jonny wrote:
Why does my skin on my scalp twitch uncontrolably when I try that crap. Does that happen to you guys too? Sean........................... |
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Title: Re: 2005 Lets get it started knowing... Post by Redd715 on Jan 2nd, 2005, 12:55pm To answer Ree's original question....Chronic here too, max. consecutive PF time I've had since March has been 10 days. Worse periods twice a year...(so far). |
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Title: Re: 2005 Lets get it started knowing... Post by Ree on Jan 2nd, 2005, 1:12pm on 01/02/05 at 09:47:53, unsolved1 wrote:
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Title: Re: 2005 Lets get it started knowing... Post by Ree on Jan 2nd, 2005, 1:14pm on 01/02/05 at 12:15:29, kissmyglass wrote:
sorry Kev... thinking about ya... no gamma knife crap... keep believing and it will happen... love ya buddy ree |
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Title: Re: 2005 Lets get it started knowing... Post by Ree on Jan 2nd, 2005, 1:16pm on 01/02/05 at 12:55:17, Redd715 wrote:
Hey people how do i get more than one quote in one post...lololol |
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Title: Re: 2005 Lets get it started knowing... Post by Sean_C on Jan 2nd, 2005, 1:19pm on 01/02/05 at 13:16:22, Ree wrote:
on 01/02/05 at 13:16:22, Ree wrote:
on 01/02/05 at 13:16:22, Ree wrote:
I'm not sure ;;D |
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Title: Re: 2005 Lets get it started knowing... Post by Ree on Jan 2nd, 2005, 1:19pm on 01/02/05 at 12:54:22, Sean_C wrote:
LOL Sean and when its happening you think that everyone can see it twitch huh... LOLOL too funny Sean and his twitching scalp... love ree |
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Title: Re: 2005 Lets get it started knowing... Post by Sean_C on Jan 2nd, 2005, 1:23pm on 01/02/05 at 13:19:24, Ree wrote:
LOL I think it makes my right ear rapidly go up and down about an inch, too bad it effects my ear huh ;;D |
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Title: Re: 2005 Lets get it started knowing... Post by Sean_C on Jan 2nd, 2005, 1:30pm on 01/02/05 at 12:55:17, Redd715 wrote:
on 01/01/05 at 11:51:05, Ree wrote:
on 01/01/05 at 23:52:57, unsolved1 wrote:
Its alot of work Ree but you can do it, call me I'll walk you through it ;;D |
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Title: Re: 2005 Lets get it started knowing... Post by OneEyeBlind on Jan 3rd, 2005, 8:01am My heart goes out to all of those that don't seem to be able to find a solution. It was easy for me, once I found this board. Trex, O2, and verap. 4 months of bloody hell ...... and that's nothing compared to what you guys have suffered. I'm praying for a solution for you guys in 2005 ! Hey Ree, thanks for starting this thread. I lost track of who was where ! |
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