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Title: Maybe a little premature, but.... Post by Roxy on May 6th, 2004, 10:11pm I may be really stupid for posting this. I started the 'other' type of verapamil. The one which my neuro wouldn't give me, but my family doctor would. I've been PF since last Friday night. That's 6 WHOLE FUCKIN' DAYS!!!!!! For those of you who don't know me....just ignore this... :). For the ones who do know me...you know what a miracle this is. I know I should wait to post about this....but I'm so damn happy it's pathetic. I LOVE YOU GUYS!!!!!!!! |
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Title: Re: Maybe a little premature, but.... Post by Woobie on May 6th, 2004, 10:14pm WOOOO HOOOOOOOOOO Rox!!!!!!!!! That's cool! What's the "other" verapamil?????? I'm glad you're getting some relief.... what are you doing with all your free time??????????? ;;D LOL Tina :-* |
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Title: Re: Maybe a little premature, but.... Post by BlueMeanie on May 6th, 2004, 10:19pm Way to go Roxy !!!! I wouldn't worry too much about being premature. Anytime you can get a break is worth mentioning. Hope it last forever. |
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Title: Re: Maybe a little premature, but.... Post by Lizzie2 on May 6th, 2004, 10:21pm Wowwww Roxy!!! This is great!!! Which one did you switch to? I went from extended release to regular release. Just curious!! CONGRATS!!!! Lizzie :) |
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Title: Re: Maybe a little premature, but.... Post by renny on May 6th, 2004, 10:24pm :) Rox, my new script is from my gen. prac. as well, gonna start it this week. Halllelujah, woman!!! May you continue down this road.... All the best karen |
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Title: Re: Maybe a little premature, but.... Post by Gator on May 6th, 2004, 10:31pm Cool! I hope it keeps working for you. That is so exciting! What exactly are you taking? Maybe there's hope for me yet. I saw my neuro/headache specialist today and he prescribed Varapamil SR 240mg. I took the first one just before I started typing this post. Here's to more PFDAN for you and crossing fingers for me!!! Gator |
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Title: Re: Maybe a little premature, but.... Post by kissmyglass on May 6th, 2004, 10:36pm WOO HOO! So Happy for you T, you certanly deserve it.... Hope it continues forever & i think it will, you have had enough.... :-* :-* Kev |
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Title: Re: Maybe a little premature, but.... Post by Kevin_M on May 6th, 2004, 10:39pm Six days is great! 8) Glad for you. Your post is a welcome accomplishment. Good things DO happen to good people. Keep going and maybe this amazing month of May may make this a mayday for your match with CH mayhem. Kevin M |
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Title: Re: Maybe a little premature, but.... Post by Elaine on May 6th, 2004, 10:40pm Pain Free feels good doesn't It Roxy I knew you would know it! I am so happy for ya! :-) |
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Title: Re: Maybe a little premature, but.... Post by JDH on May 6th, 2004, 10:58pm Fuckeneh Rox, you go girl! [smiley=thumbsup.gif] Next I wanna hear about 6 more pf days and then 6 more and 6 more.......... Jim |
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Title: Re: Maybe a little premature, but.... Post by stevegeebe on May 6th, 2004, 11:08pm Breathe...breathe.. you know what I mean? Steve G |
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Title: Re: Maybe a little premature, but.... Post by Cerberus on May 6th, 2004, 11:18pm Sweet 'n' Meaty.... :D Ramon |
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Title: Re: Maybe a little premature, but.... Post by TxBasslady on May 6th, 2004, 11:22pm Way to go, Tracey !!!! Keep it up ! Love ya, Jean |
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Title: Re: Maybe a little premature, but.... Post by cootie on May 6th, 2004, 11:24pm Hey I know you........and that is GREAT NEWS !!!!! Happy as hell for ya and keep goin PF........jus do it !!! Pam the soon to be vacation'r :-* |
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Title: Re: Maybe a little premature, but.... Post by Roxy on May 6th, 2004, 11:27pm OMG.....I'm pushing the ege here... Drinking red wine....can ya believe it....ROTFLMAO..... Ain't life grand.... 8) |
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Title: Re: Maybe a little premature, but.... Post by Charlie on May 6th, 2004, 11:30pm http://www.netsync.net/users/charlies/gifs/happy sign.png Can't beat it Rox. 8) Charlie |
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Title: Re: Maybe a little premature, but.... Post by Ree on May 6th, 2004, 11:35pm SO ROX... WHAT IS SLEEP LIKE? AND SEX? AND LIFE WITHOUT PAIN? AND ............ SHEESH HERES A GIRL NOT TAKING ANYTHING FOR GRANTED......... ALL I CAN SAY IS WOOOOOOOOOFREAKENHOOOOOOOOO!!!! ITS ABOUT TIME............GOD BLESS YA HONEY... HOPE IT LASTS....LOVE REE |
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Title: Re: Maybe a little premature, but.... Post by firebrix on May 6th, 2004, 11:59pm Kia Ora Roxy!!! This is the best news in weeks!! So happy for you!! Have fun!! firebrix |
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Title: Re: Maybe a little premature, but.... Post by Mr.Happy on May 7th, 2004, 12:01am on 05/06/04 at 22:14:32, Woobie wrote:
Standard release........not slow release, or extended release. Standard release. Damn, but I _swear_ I coulda read that somewhere around here. As long as it works, RJ |
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Title: Re: Maybe a little premature, but.... Post by Mastifflvr28 on May 7th, 2004, 12:30am Premature for what?? Yer freakin CHRONIC!!! lmao. And ya just JINXED yerself :) (I know Jonny, you don't believe in jinxes) :) Rox...keep us updated. Me thinks I remember telling you to switch veraps about a YEAR AGO!!!!! I know...stupid doctors. Congrats sweety!!!! So happy for ya Mast |
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Title: Re: Maybe a little premature, but.... Post by fubar on May 7th, 2004, 1:24am That's always great to hear. I was pretty much doing backflips when I was put on Verapamil, very happy to find some hope. Funny thing about Verapamil for me though, no matter how much I was on my blood pressure never deviated from baseline. I was on 720mg/day for the most part. Tracey, you deserved a break and let's hope it's a LONG one too. And looky here, just in time for the convention! You really know how to tempt the beast though... first you go blabbin here after 6 days (it took me 2 months to get over the fear of jinxing myself) and now your drinking red wine? You're a nut. Congratulations. Enjoy every PF moment. |
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Title: Re: Maybe a little premature, but.... Post by kissmyglass on May 7th, 2004, 6:15am OOOOOOOOOOO Ree said freakin :) Ps. Hows the boys Ree? |
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Title: Re: Maybe a little premature, but.... Post by Svenn on May 7th, 2004, 6:34am Im so happy for you Roxy You earned it Have a good pf time and just party on. The very best from Svenn |
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Title: Re: Maybe a little premature, but.... Post by OneEyeBlind on May 7th, 2004, 6:47am Great news, Roxy !!!!!!!!!!!!!!! Tip a glass for me ! |
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Title: Re: Maybe a little premature, but.... Post by thomas on May 7th, 2004, 9:00am http://www.kdlltd.com/fuckeneh/bchrun-F.jpg Absolutely awesome news, hope is lasts a looooooong time. ;;D p.s. Hey, no cigs with that wine, ok? |
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Title: Re: Maybe a little premature, but.... Post by Gena on May 7th, 2004, 9:22am 6 days is 6 days hun. Take what you can get.... hope you stay that way.... every pain free day is a great day [smiley=laugh.gif] |
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Title: Re: Maybe a little premature, but.... Post by BruceD on May 7th, 2004, 10:27am Hey Rox, A big Texas-sized WoooooHoooooo! from the land of cheese!! I love vera, great stuff for me too. Later BruceD |
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Title: Re: Maybe a little premature, but.... Post by AlienSpaceBabe on May 7th, 2004, 10:38am Now go have some fun, the kind ya couldn't have when ya knew ya'd get hit.....!!! hugs, Lizzie |
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Title: Re: Maybe a little premature, but.... Post by Jeepgun on May 7th, 2004, 11:31am Fan-fuckin'-tastic!!! You go, girl!! |
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Title: Re: Maybe a little premature, but.... Post by Jayne on May 7th, 2004, 11:34am I know all to well how happy you are feeling right now. ENJOY EVERY PAIN FREE MINUTE YOU CAN (and yes I'm shouting) I love it when a chronic gets some relief!!!!!!! |
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Title: Re: Maybe a little premature, but.... Post by Roxy on May 7th, 2004, 12:01pm on 05/07/04 at 09:00:08, thomas wrote:
LOL...no smokes with the wine....no ch's either. 7 days and counting |
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Title: Re: Maybe a little premature, but.... Post by 9erfan on May 7th, 2004, 10:09pm Celebrate EVERY DAMN DAY!!! You deserve it!!! I'm doing a happy dance for you!!! Love ya, V. |
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Title: Re: Maybe a little premature, but.... Post by 9erfan on May 7th, 2004, 10:12pm By the way, tell me again....are you NOW using standard release or are you NOW using extended release? |
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Title: Re: Maybe a little premature, but.... Post by K. on May 8th, 2004, 12:18am Roxy, I'm so happy for you. Hope it lasts FOREVER!!!! Very wishfull thinking but one can dream! Which Verap are you on now? K. |
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Title: Re: Maybe a little premature, but.... Post by jonny on May 8th, 2004, 12:31am When I went from ER to SR I went nine weeks with only one Ha, it was the worst one I ever had but well worth it. To date I have only had about 6-7 HA's in like 9 months, not counting the fucks I kill in minutes with 02. I owe thanks to the Cluster God for this switch, I ran low one time if ya know what I mean. Im sending the majic mojo instilled in me your way, Trace!!!!! ...........................................jonny |
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Title: Re: Maybe a little premature, but.... Post by stevegeebe on May 8th, 2004, 12:39am It does not show jonny. SR does not thin that blue blood...I guess?. ;;D Have fun Tracey. Steve G |
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Title: Re: Maybe a little premature, but.... Post by Edna on May 8th, 2004, 1:05am FUCKENEH for Tracey, you deserve it gal. Enjoy every minute of it, and I hope it lasts a really, really long time for you!! hugs for you still, EDNA :D |
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Title: Re: Maybe a little premature, but.... Post by Tim_w on May 8th, 2004, 1:31am Tracey COOL ;;D So Happy for you !! Its about F-in time I had 6 pain free days a few weeks ago thought I died and went to heaven!! I pray your PF time last for ever!! Timw Happy Pappy |
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Title: Re: Maybe a little premature, but.... Post by Renee on May 8th, 2004, 1:34am Tracey, YAHOOOOOO!!!!! SO glad to hear you've caught a break and hopefully this break will last. Keep up the hard work and enjoy, enjoy and enjoy a lil' more. do ya think quitting smoking had any role in this pf time? so happy for ya renee |
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Title: Re: Maybe a little premature, but.... Post by Mastifflvr28 on May 8th, 2004, 7:33am Do I hear an 8?? Still happy fer ya roxter :) Mast |
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Title: Re: Maybe a little premature, but.... Post by suzy617 on May 8th, 2004, 9:47am Hope your still enjoying them pfdan's. :D Life is good, Suzy |
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Title: Re: Maybe a little premature, but.... Post by Roxy on May 8th, 2004, 3:07pm on 05/07/04 at 22:12:09, 9erfan wrote:
My neuro (who is supposedly one of the best ch docs in the US) had me on the verapamil ER for over a year. I asked for the SR, and he basically told me I didn't know what I was talking about. Took myself off of that verapamil about a year ago, and my family doctor wrote a script for the SR. I started at 320mg a day, and that seems to be doing the trick. 8 FUCKIN' DAYS AND COUNTING...... WHOOOOOO HOOOOOOO Makes me not even care that my mother's day gift was a trip to the bait shop for minnows, worms, shrimp and stink bait. Oh yeah, they also gave me a damn 7am tee time tomorrow!! |
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Title: Re: Maybe a little premature, but.... Post by bobkip on May 8th, 2004, 3:24pm Keep counting girl. Some damned docs think they know it all and get their fur up when you know more than they do. Best of luck. Kip |
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Title: Re: Maybe a little premature, but.... Post by Leesa on May 8th, 2004, 10:16pm KICK ASS news Rox!! *happy dancein round the room* I hope it stays this way for ya hun. You deserve this BIG TIME!!! ENJOY IT!!!! Leesa |
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Title: Re: Maybe a little premature, but.... Post by Kevin_M on May 8th, 2004, 11:10pm Trace, I've always kept my gp and a neuro. I've found that a neuro's shortcomings, like prescribing only twelve imitrex nasals a month, or stubborness, can be rethunk by my gp, who prescribed more, and better corrections to treatment made. Whereas, when my gp fell short at times, like when he laughed at O2, the neuro was able to take it from there to help prescribe it. It made no sense to me to limit me to only a small supply of imitrex to abort oncoming HAs at work, which would be important to me to keep my job and insurance, but having all the abort I would possibly need at home in the form of oxygen. It's a funny medical world we have to work with. Way to go Roxy!! Kevin M |
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Title: Re: Maybe a little premature, but.... Post by Roxy on May 9th, 2004, 12:09pm Damn.....guess it was too good to last. Only had three last night, but even with just 8 days off.....it spoils you. I've got a question about the verapamil though. If it worked to keep me PF for 8 days......why does it come back all of a sudden? What is the difference? Just seems like if it keeps you PF for a few days.....it should keep doing it. T |
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Title: Re: Maybe a little premature, but.... Post by jonny on May 9th, 2004, 12:20pm Mix in some lithium......Yum! ;;D ............................jonny |
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Title: Re: Maybe a little premature, but.... Post by Roxy on May 9th, 2004, 3:00pm on 05/09/04 at 12:20:08, jonny wrote:
I asked for lithium jonny......they won't let me take it. I'm already on a med that's hard on the liver (Lipitor).....they won't let me take two. It stinks...... :-/ |
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Title: Re: Maybe a little premature, but.... Post by Kevin_M on May 9th, 2004, 10:35pm on 05/09/04 at 12:09:25, Roxy wrote:
Just a wild guess, maybe it got confused for a short time by the different form of a medication it was used to, then adjusted and adapted to it and was able to overcome that too. Hope that's not the case but sounds like changing meds can offer a temporary reprieve. Glad for you stringing together eight days and wishing you more in the future...soon. Senseless reaching through the veiled mystery. Kevin M |
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Title: Re: Maybe a little premature, but.... Post by stevegeebe on May 9th, 2004, 10:48pm Tracey, When it comes to why this works and then not, with cluster headaches...man. Who knows? Hope it goes back away. Steve G |
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Title: Re: Maybe a little premature, but.... Post by AlienSpaceGuy on May 10th, 2004, 12:06pm Roxy, sorry to hear you get hit again. My guess what brought you 8 pain free days is: After switching from ER to regular you had a short peak of verapamil in your body, the old ER still releasing and the regular added. Now that this peak has passed you're getting hit again. If this is true the solution is simple: increase your dosage. Remember what Goadsby said about Verapamil: The dose is increased until the cluster attacks are suppressed, side-effects intervene or the maximum dose of 960mg daily is achieved. PFDANs, ASG |
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Title: Re: Maybe a little premature, but.... Post by Roxy on May 10th, 2004, 7:17pm Hey ASG, I know about upping the dosage, I just really didn't want to yet..... :-/. Was kinda hoping the lower dose would kick it's butt. I'm waiting to see if that one night was just a fluke, or a continuing thing. I've still been lucky except for that night. The shiraz is still tasting pretty good too....... ;;D |
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Title: Re: Maybe a little premature, but.... Post by Jabeen on May 10th, 2004, 7:36pm Last time I had CH's, nothing worked til I got to Wellbutrin. They went away for 5 years. Then they came back (2 years ago)-so I immediately went to the Wellbutrin-and it's hard to say what the deal is now. It's not as bad as some of these people-but it's 1 a night- several times a week. I am thinking I want to try something else. Regular verapimil didn't work for me last round-but maybe I should try this "new" kind? I keep hoping the damn things will just go away again...but I'm thinking my cycle of life could be a factor- Hope it keeps helping you- Jeanne :) :) :) |
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