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Title: three days now... Post by carriefu on Jan 25th, 2006, 5:29pm this cycle from hell is ongong....first its horrible than it lets up just enough to make me afraid its still there....than it hits again... makes me wonder when the fog will lift and ill feel human again |
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Title: Re: three days now... Post by clarence on Jan 25th, 2006, 5:31pm Hang in there... Casey |
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Title: Re: three days now... Post by zwibbs/Scott on Jan 25th, 2006, 5:44pm Stay Strong--You have alot of people here to rely on. |
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Title: Re: three days now... Post by zwibbs/Scott on Jan 25th, 2006, 5:45pm NY Yankees Suck!!! translucentbeauty -----------------------------------------------------------------------------------------------------------------------------VERY GOOD CLARENCE !!!! -LET'S GO METS !!!!!!!!!!!!!! |
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Title: Re: three days now... Post by carriefu on Jan 25th, 2006, 6:12pm lol!!!!i love the yankees!!! even damon now that hes on !!! so much to do ..and no energy |
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Title: Re: three days now... Post by Guiseppi on Jan 25th, 2006, 6:39pm Hug and a prayer....even if you are a Yankee fan. As a padre fan I haven't gotten over the sting of the four game sweep, and that was 11 years ago! Guiseppi |
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Title: Re: three days now... Post by carriefu on Jan 25th, 2006, 6:44pm thanks gui....your ok for a padre fan...why the padres??lol... im in a huge funk and cant wait to get out of this.. the worse part is knowing that i havent quite peaked at worst part yet im so mad that this came on....so early this year, and right at the worst time |
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Title: Re: three days now... Post by Guiseppi on Jan 25th, 2006, 7:02pm I'm a padres fan cuz I'm one of those disgusting, well tanned, warm, San Diego natives!!! Hang in there, they do end, sometimes it seems like it takes forever but they do end. Guiseppi |
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Title: Re: three days now... Post by carriefu on Jan 25th, 2006, 7:58pm i know they end.....but i feel like lashing out at everyone i know... my poor husband everytime he asks how im feeling i give him hell...afterall if hed look at my left eye hed know its amazing to me that with all of our knowledge as humans we still have to suffer like this i wonder if neuros and drs really know how bad this is |
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Title: Re: three days now... Post by zwibbs/Scott on Jan 26th, 2006, 1:08am i wonder if neuros and drs really know how bad this is IP L Believe me they do---The thing about it is they have to deal with so many problems that " Cluster" is just another thing on the list....My Neuro feels that CH can be attacked with medication....I waited so many years to actually go to a Neurologist that I now kick myself because I would just ride the pain for the two--to--three month period of the cycle. |
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Title: Re: three days now... Post by carriefu on Jan 26th, 2006, 12:04pm im trying to ride it out as we speak, ive just had so many bad dr experiences |
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Title: Re: three days now... Post by zwibbs/Scott on Jan 26th, 2006, 4:57pm Maybe perhaps if you rooted for the Mets..............Only kidding---I wish nothing but Pain-Free nights and days for you !!!!!!!!!!!!!!!!!! |
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Title: Re: three days now... Post by carriefu on Jan 26th, 2006, 4:59pm SHALL WE COMPARE "RINGS"...how mant do the mets have again???lol...pf days to you |
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Title: Re: three days now... Post by zwibbs/Scott on Jan 26th, 2006, 5:15pm Oh there we go----Thr Ring Thing------maybe it is because the Yankees have been in existence for 500 years !!!!!!!!!!!!!!!---I think you'll be pain free tonight !!!!!!!! |
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Title: Re: three days now... Post by carriefu on Jan 26th, 2006, 5:18pm we yankee fans love it when fans of other teams start saying thins about rings....they always have an excuse...lmao...pf days ahead before opening day!!! ;;D |
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Title: Re: three days now... Post by zwibbs/Scott on Jan 26th, 2006, 5:28pm ...pf days ahead before opening day!!! IP Logged -------------------------------------------------------------------------------------------------------------------------------------------------------NO---PAIN FREE BEFORE PITCHERS AND CATCHERS REPORT TO SPRING TRAINING!!! |
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Title: Re: three days now... Post by carriefu on Jan 26th, 2006, 5:33pm hell ya!!!pf days before spring season...lol!!!!! my boys are in little league..praying these end before |
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Title: Re: three days now... Post by Mikey on Jan 28th, 2006, 2:30pm I think all of us have had the BAD DR. thing, that's for sure, but if you find the right Dr. you will see that he does understand, and will do almost anything you ask in order to help you, because the fact of the matter is, is that most of the Docs just plain don't know what to do, and hope that you can help them help you. Hang in there Carrie, I'm chonic, and i have to tell my Doc what to do for me, and he does it!!! I'm so lucky to have such a Doc!! I also have several Docs that help me with this, UNC-Chaple Hill headache center With Dr. Alan J Finkle is a very good Doctor there, after all he is the Nuerology dept head, and Headache center head. I also have a local Nuerologist that Dr. Finkle says is one of the best. Then there's my PCP Doc that follows what they say, and does anything I want done at anytime. If you live anywhere close to the Medical traingle park area here in the Great Medical State of NC, then i would try my best to get in with one of the Nueros there, even if it's once a year, it may be worth it to you! It has been for me. If I'm not mistaken, I had told Chuck about it too, and he got in (It can be very hard to get in to see them, so you really need a Doc to almost beg for you) so he might be able to tell you of his expierience there as well. I hope that your cycle ends very soon Carrie!!! Nobody needs to suffer the way that we do, that's for sure!! Mikey...... ;;D |
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Title: Re: three days now... Post by sandie99 on Jan 28th, 2006, 2:34pm Carrie [smiley=hug.gif] [smiley=hug.gif] [smiley=hug.gif] [smiley=hug.gif] [smiley=hug.gif] I wish you stregth to deal with the beast this time. I hope that the cycle is short and that you'll be PF very soon. Best wishes, Sanna |
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Title: Re: three days now... Post by zwibbs/Scott on Jan 30th, 2006, 4:22pm hEY CARRIEFU--ARE YOU DOING ANY BETTER? I HOPE THAT YOU ARE-----BY THE WAY ARE YOU COPYING SHAQ-FU ?!?!?!?!?! |
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Title: Re: three days now... Post by carriefu on Feb 3rd, 2006, 10:32pm im still in the middle of this stupid head crap, wasnt on for a couple days, did the er twice and the new neuro..hopefully im in the middle of it,who knows??the middle always gets me down...but, it could be worse.. as long as im p/f for the SEASON it will be good...(cant wait to sport the new DAMON shirt.... |
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Title: Re: three days now... Post by FramCire on Feb 3rd, 2006, 10:38pm Despite my hatred of all things Yankee (except people), I'll say a few prayers for you. Not just for wearing a Damon jersey but for your cycle. I have been in cycle since before Thanksgiving and thanks to 9 mg of Melatonin and 480 mg of Verapomil, I feel human again and I am only experiencing shadows and low kips. I hit rock bottom a few weeks ago and honestly felt suicidal. If I didn't have kids and an awesome wife (plus this place), I don't know what I would have done. I think we all can relate and here's to PF months/years VERY SOON for you. Eric (Red Sox fan) |
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Title: Re: three days now... Post by carriefu on Feb 3rd, 2006, 10:42pm thank you eric...g-d bless you and those poor sox...how many rings do they have again???bless their hearts!!!im working toward h/a free...and im lucky for the support of my best friend (my husband) and all of our kids... p.s......damon has always been a cutie, but this new jersey,with the haircut, oh my!!! |
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Title: Re: three days now... Post by zwibbs/Scott on Feb 5th, 2006, 3:27am I wouldn't go to any Yankee Games because it just might start the cycle up again---GOD FORBID !!!! Believe it or not.....My very first Cluster Headache happened at Yankee Stadium during a 4:00 P.M. game, and it scared the hell out of me, as I didn't know what in the world was going on !!! 28 years later---I now know. |
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Title: Re: three days now... Post by burnt-toast on Feb 5th, 2006, 8:12am Being familiar with Hell - find something, anything to keep your spirits up and feet moving. Never stop fighting back because even Hell runs out of fuel every now and then. The fight sometimes is the only thing the keeps us feeling human. Best Wishes Tom |
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Title: Re: three days now... Post by carriefu on Feb 9th, 2006, 11:46am been awhile since i first posted that...now i'm in the middle of hell, its just not letting up, no matter what i do so many er visits this time, so many dr. visits this time....where is the cure???what will break this cluster?? |
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Title: Re: three days now... Post by E-Double on Feb 9th, 2006, 12:01pm Hi Carrie, I have read through your posts and the only mentions of treatment were in regards to Head On, dramamine and a question regarding usage of axert. What are you doing for treatment? Preventatives? Abortives? I am going to give you som elinks that I want you to read through. This is a great resource to know like the back of your hand...print it out and give it to the doc http://www.brightok.net/~mnjday/chtherapy.pdf It will present the appropriate treatments that you should seek and your doctor should know!!! If you want an abortive with the least amount of side-effects O2 should not only be requested but demanded from your doctor!!! http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm I have used Zyprexa as an abortive and have found it to work (for me) as fast as Imitrex and without the "hangover" http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1120904753 If you do have the "typical" wake you up in the middle of the night horrors then.... Melatonin might be very helpful Many of us (myself included) have found that taking 6-9mg (some take more) about a 1/2 hour to 45minutes prior to bed have Knocked out the night visits and can finally get sleep. With the exception of 10-12 times.....I have slept through the night since August '04 (went chronic in March 05).....Still get hit during the day but my overall quality of life is better because I am not as exhausted all the time. Some people report that it seems to make them worse....The fact is that we are all different and respond differently to everything therefore it may or may not... The one thing I will tell you as far as my experience was that I had to stick with it...The first night I took melatonin, I was awoken with a doozy only I was too groggy to find my O2 .....It got a lot better for me....I then slept through the night but would get slammed about 1/2 hour after waking up....kinda like knocking the beast off schedule.....then again I was peaking and this cycle has been all over the place with no real pattern. I stayed with melatonin and have had decent sleep overall. (Maybe I should start folowing my own advice again hahahaha!) It may help and it is natural with not too many sideeffects....also ask your doctor b/c if there are any side effects or contraindications...I think they have to do with mild depression..... Like I said we are all different. Gauge through everyone's preferences on the site and you will see that though we do respond differently, there appears to be preference with either, Imitrex Injection, Zomig NS or ZMT, OXYGEN with a non-rebreather mask and a high flow regulator (12-15 lpm), and some use ergots (DHE NS or Injection and Cafergot). There are also many who have gone the alternative route as well as some who just decide to bare knuckle it. It is YOUR choice!!! Go find some relief! Eric |
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Title: Re: three days now... Post by carriefu on Feb 9th, 2006, 12:11pm thanks eric....i just read through my posts...lol...i do have 02 and i have used it for quite a few years, my preventitive is inderal...120la...i know its ancient, but for some reason when it kicks in on me, it works....(my neuro(old one) has done all the other preventitives...pred, verap, elavil...you name it, iw as the youngest person at the time to ever use imitrex injectables (this was a long time aga)and my neuro at that time reported my effects to glaxo,now, im using maxalt, with midrin....unfortunately, my headaches are not "very treatable" i have had them for a very long time, ive been on everything...its strange, but one day from now i'll just wake up and they willl be gone... |
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Title: Re: three days now... Post by E-Double on Feb 9th, 2006, 12:16pm Maybe time for a change or trying something again. It appears that the inderol isn't helping and you are having a really rough time. Or it is what it is and you just need a big HUG!!!! Either way I hope you find relief! E |
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Title: Re: three days now... Post by carriefu on Feb 9th, 2006, 12:21pm i just read about you and zyprexa...hmmm...ive never heard of it given for this.. |
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Title: Re: three days now... Post by E-Double on Feb 9th, 2006, 12:30pm on 02/09/06 at 12:21:25, carriefu wrote:
It's sick!!!!!!!! For me and a few others on the MB that have tried it have reprted that it works as fast as any of the fastest triptans and is CHEAPER and no crappy feelings after. At the moment I am attempting to be completely med free and just use my oxygen, however I have been very tempted to just reach for it. 1/2 a pill and 5 minutes PF. Anyway, that may be your new weapon of choice. If you can get a sample see how it works and report back to us. I know RJ would be thrilled to see another one testing it ;) Keep us or at least me updated. Eric |
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Title: Re: three days now... Post by Margi on Feb 9th, 2006, 12:48pm carrie, excuse the interruption but...am I reading your posts wrong? Are you having headaches that last for three days? |
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Title: Re: three days now... Post by carriefu on Feb 9th, 2006, 4:12pm oh no margie.....that was the begining of the hard part of this cluster... |
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Title: Re: three days now... Post by Guiseppi on Feb 9th, 2006, 11:12pm Just remember Carrie, it could be worse. My Padres just signed another washed up has been, Piazza. Sigh, wait'll next year! (We say that a lot in San Diego) Sending you good vibes, wishes and prayers for a pain free day soon. Guiseppi |
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Title: Re: three days now... Post by pfunk on Feb 9th, 2006, 11:25pm Carrie- Just caught on to this thread and wnat to send out my well wishes. Those go out double time from me seeing that I found out there was a fellow Yankee fan out there reading with me. Much luv and PFDAN ;) 8) Pfunk |
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Title: Re: three days now... Post by Dragnlance on Feb 9th, 2006, 11:49pm GO BLUEJAYS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! As I recall, they happen to have some rings.... *Grins* Despite the Yanks, I will pray for your speedy progress to your nearest pain free period!!!!! Sorry you are hurting!! Dragn |
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