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Title: It's been 2 years, but alas, I'm back :( Post by F1World on Sep 9th, 2004, 1:39am Hi to those that remember me, and hello to those that don't, nor even care to .. heh. I feel sheepish that I have not come around in the past, well, 2 years, but I hope you can understand that once the clusters had passed, all of this was such a horrible, horrible dream that I could not bear to recant such memories. I realize that is pretty selfish on my part, considering that there were so many wonderful people here that did everything they could to help me in my hours of need .. and all I did was just leave without considering others. I have come to once again seek advice, read some similar horrors and see if there has been any kind of real breakthroughs in the meds for clusters. That bastard beast is back ... he came around about a week ago, and has been getting stonger and stronger within my noggin ... every 2 years it seems I get hit ... as this is my 3rd bout with him, it, them. The last time through this wonderful site ( DJ is a saint for keeping this all going ;) ), Imitrex was the shiznit ( thank you Grant for sending me those inhalers ) along with Margi's water treatment (still remember her name ... so incredibly helpful and caring) and Jonnys' 02 treatment was giving peeps some relief ... so other than that, has any miracle happened to be produced from the pharmaceudical companies in which 'average' people can afford? I have been trying to cope with nothing but Tylenol and Motrin ... and well, they are more placebos than anything for this type of viciousness. Any recommendations would be greatly appreciated. Are Margi, Grant, Jonny still around? My hellos to all those that I have yet to mention as well. My thanks for taking the time to read this, and again, my apologies for not coming around sooner than when "I" am in need :( Jeff |
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Title: Re: It's been 2 years, but alas, I'm back :( Post by Jonny on Sep 9th, 2004, 5:12am What, me leave?.......Never ;;D Welcome back Jeff, sorry your back for the reason you are! ........................................jonny |
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Title: Re: It's been 2 years, but alas, I'm back :( Post by Ree on Sep 9th, 2004, 8:08am Hi Jeff... Welcome back ya... one thing for sure is that you will always find jonny and me hanging around here... til the cure....... sorry your back let us know what ya need... remember it will end......... love ree |
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Title: Re: It's been 2 years, but alas, I'm back :( Post by Melissa on Sep 9th, 2004, 8:16am Hi Jeff, Sorry to hear you are back in cycle again. First off, please try not to take the Tylenol and Motrin, they not only do not work for ch's and can irritate your stomach (ibuprofen) but they also cause rebound ha's. If you need to take something inbetween hits for shadows, consider taking Aleve (naproxim sodium). Is there anyway for you to get into see a doc or get a referral to a neuro? Perhaps you would be able to get some samples to help you through. Good luck to ya... :)mel |
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Title: Re: It's been 2 years, but alas, I'm back :( Post by Edna on Sep 9th, 2004, 8:50am Welcome back Jeff, Sorry to hear the beast has revisited you. But yeah, those great people you know are still around. They stick around that bad grass.......you can't get rid of em even IF we wanted to. :) Hope you find what you need here, and keep us posted on your progress. pf wishes, EDNA |
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Title: Re: It's been 2 years, but alas, I'm back :( Post by Giovanni on Sep 9th, 2004, 9:49am Some fairly inexpensive things that might be of benefit are: Melatonin @9mg one hour before bedtime (people here use between 6-12mgs--9mg appears to be the magic number), B complex vitamins, magnesium (I believe at 250 mg). All of these items are available at any vitamin store (i.e. GNC, etc). There appears to be a 50-50 chance of help from this combo. The biggest help for me has been through the alternative treatment found here: www.clusterbusters.com Good luck, John |
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Title: Re: It's been 2 years, but alas, I'm back :( Post by Margi on Sep 9th, 2004, 10:03am Hi Jeff, of course I remember you! How's things in Saskabush? Sorry to see you back here for the reason you've had to use though. Nope, nothing really new in the way of cluster treatment. But hey - we have a Canadian cluster site now - check us out - we're building quite a family there now :) http://www.clusterheadaches.ca - we have a message board there as well. Please visit. p.s. Grant's living closer to you now. |
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Title: Re: It's been 2 years, but alas, I'm back :( Post by Gator on Sep 9th, 2004, 11:17am Welcome back Jeff. Sorry you are getting hit again. I suppose not much has changed in that absofukenlutely nothing from a pharmacy is cheap to treat this beast. I wasn't here 2 years ago, but I'd bet you'll find the info available and the support here is as good as it ever was, probably better. PFDAN to you. Gator |
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Title: Re: It's been 2 years, but alas, I'm back :( Post by nancyc on Sep 9th, 2004, 11:41am Hi, Jeff...sorry to see the beast is paying his visit again...He has a way of doing that though....Have you checked in with your neuro yet? If not, call him pronto...Not sure what you have tried in the past....Check on the med page here and see some of the comments there too! Good luck and stick around...smiles,nancyc ;;D |
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Title: Re: It's been 2 years, but alas, I'm back :( Post by ZAIRA on Sep 9th, 2004, 1:06pm And you... do you remeber me?? ;;D Hi Jeff....... I can understand that in this moment of sadness there is only a huge misery and sadness... but if you are too bad and you can’t bear the pain, PLS turn your head and in the darkness you’ll see other people like you, fighting! ;). Brave and strong, fighting for some time, if you know nothing else, know that we do feel your pain............. I send you my vibes so that your cycle go away :'(! Ciao, Zaira |
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Title: Re: It's been 2 years, but alas, I'm back :( Post by Mark C on Sep 9th, 2004, 2:47pm I was just thinking about you........sorry you are back....you know what I mean.. ;) Kick Ass, Mark |
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Title: Re: It's been 2 years, but alas, I'm back :( Post by F1World on Sep 12th, 2004, 2:16pm Many thanks for all the warm hello's and the good vibes ... alas, I wish I could say how much better I feel .. but I don't. I don't understand why these things come with more frequency and intensity ... for the last few days, it's been up to 6 a day for me .. and though I realize that some go through more than that and cope, I just feel like .......................................... I mean, this is just insane. I dealt with my last cycle that went 46-48 days, something like that, but I really was only hit at night, and as ludicrous as that sounds, I could deal with it for the most part ... however, I'm also getting hit in the days now ... and F'n hard too ... for an hour or two or more ... only to have it pass and be hit within 2 hours again! I already feel like I'm losing my sanity, and I'm only into my second week ... man, I really can't fathom going through this crap for another month! I'm going to see the doc tomorrow ... though, he'll just refill a script for Imitrex that is probably stupidly overpriced still, and I know I really won't be able to fill it .... we just don't have the extra cash .... my wife just had our first son two weeks ago, and though I should be through the moon with this beautiful boy of mine, I can't see past the tears and pain to realize how joyous this should be. I'm really bummed here ... we don't have Aleve in Canada, I've been taking advil for migraines, the liquid caps, and they sort of help if you take one soon enough, and bite it open in your mouth ... but just like the trex, if you wait too long, nada. Sorry to be a poison pill here ... but all of you reading this know exactly what I'm talking about and are going through yourselves. It's just impossible to be chipper and thinking how great life should be when you feel this miserable for so long. What pisses me off, I mean really pisses me off, is when someone looks at you (co-workers for instance) and ask what's wrong cuz you haven't slept for days and you tell them CH, and they just sort of brush it off like you're this baby with a headache ... boo hoo, here's a childrens tylenol, call me when you get some balls. No one understands this, no one ... well, cept you guys. I feel ashamed to say I have a headache, because people look at you like it's no big deal, like ya, I've had headaches before ... get over it. I wish it possible to somehow inflict this pain on the nay sayers, just to have them walk in my ( our) shoes for a few days ... let alone a few weeks, or months ... see how great everything is then. Sorry for the rambling ... I'm just really tired, and pissy. I'm sick and tired of being sick and tired ... you know? |
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Title: Re: It's been 2 years, but alas, I'm back :( Post by yikes_another_one on Sep 12th, 2004, 3:58pm ;) Just hang in there, and remember you are more of a soldier than they realize. If half of them had your type of pain, they'd melt....and beg for a quick escape off the planet. The doctors always say this pain is not associated with a tumor or other cancers, like that is suppose to encourage us to be thankful.... It's hard to take another breath, hard to walk to the sink for water.... it's just plain hard. But you know the cycle, and you know relief is coming. Just count down the hours, and keep doing what it takes. Zomig, helped me, even in themiddle of an episode, but they only prescribe 6 pills a month, and it costs more than my allowance to get to the docotr to get the damn piece of paper that will force a pharmicists to give me the pills....and then it takes about $50.00 to get the pills even with insurance.... so my hubby, God bless him, said i couldn't refill it. He wants to prove a point to the rich pill making people... so yeah, i suffer through the pain. 33 years old, working at a daycare with 10 young one year olds.... and i try to hide the tears, stifle the moans, so I don't get sent home or fired for having a pain I cannot control or escape.... Only God know why we have to suffer like this, and you will be blessed once the episode passes, with a glorious day full of peace and joy.... HOLD onto the pattern, count down the hours, and don't give up. hang in there, and you will survive... we always do. TJ |
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Title: Re: It's been 2 years, but alas, I'm back :( Post by john_d on Sep 12th, 2004, 4:22pm on 09/12/04 at 15:58:19, yikes_another_one wrote:
your hubby says you can't get a refill to make a point to the drug companies? that's not going to make a point to anyone and you are left suffering, no offense but that is very lame |
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