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Title: WHAT WOULD YOU DO? Post by nancyc on Apr 14th, 2004, 7:38pm Some of you guys here know me well....I am a chronic clusterhead who was out of work for over five months ...unable to control the chs....Almost lost everything, including me....anyway, I went on a combo of meds that was against everything in me...BUTT, it worked..and has worked for 1 year and 8 months other than a few breakthrus...anyway, I am at a crossroads here....Am I another Charlie or Donna H who has outgrown chs after 25 years??? Do I take the chance of coming off my medication regime or do I stick to it and be Grateful I am pf? How do you know when you are no longer a clusterhead? How do you know when you have been given a reprive? I am afraid to try ...need some feedback....smiles,nancyc ps THanks for all the well wishes since my son has been home from being deployed...family is a wonderful thing...the only other one I have had in a long time is HERE! |
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Title: Re: WHAT WOULD YOU DO? Post by Melissa on Apr 14th, 2004, 7:41pm Sis, I have NO idea, but I just wanted to post on this here thread that I cannot wait to HUG YOUR NECK IN NASHVILLE!!!!!!!!! ;;D ;;D miss you lots... :-*mel |
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Title: Re: WHAT WOULD YOU DO? Post by HypnoticFreddy on Apr 14th, 2004, 7:48pm I am sorry, I don't know you well, and I am sure you are well-known round these parts, but I'd say as long as you can tolerate the medication, and it works, why change it. I just started Topamax 3 weeks ago and like something I have never experienced before it went away on a moderate dose after 7 days, been 15 days PF. Now I am episodic and I suffer from depression. Totally un-related to CHs. I can't imagine what it is like to be chronic. I am not sure due to my two falls into the abyss of a major depression I would be able to survive chronic CHs, so if anything I congratulate you for hanging in there and seemingly doing ok. -Scott P.S. I really feel like I want to go to this convention and meet many of you |
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Title: Re: WHAT WOULD YOU DO? Post by stevegeebe on Apr 14th, 2004, 7:51pm "1 year and 8 months". You're counting. If you think it may be bad on you, than you may want to ask you Doc and let what he says be a part of the process of your decission. Steve G |
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Title: Re: WHAT WOULD YOU DO? Post by jonny on Apr 14th, 2004, 7:55pm Nancy, where the hell you been girl? Take it from me babe, you dont want that shit in your system if you dont need it. You know i have tappered down only to have to go back up, but thats me and not you! You will never know unless you taper down slow, you can always ramp up if you need to babe. Your a nurse and you know what you are doing......much luck and love to you my friend!!! ..................................jonny |
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Title: Re: WHAT WOULD YOU DO? Post by nancyc on Apr 14th, 2004, 8:07pm Hey, Sexy Jonny!....damn it feels good to be home again...I have been spending time with my son and grandson...Stephen is now home from being deployed...life is good... As far as tapering down on my meds, I am at the lowest dose you can be on...I have never had to increase them...I was put on the regime, and a few days later, I was pretty much pf...I remember the time, I came off verapamil and when I tried to go back on it, it would not work for me...Guess I am scared to try to come off of it and find out if I am another Donna/Charlie...but I do keep wondering if this is possible... :Dnancyc PS Mel, hope I get to Nashville to hug your neck too, gal! |
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Title: Re: WHAT WOULD YOU DO? Post by jonny on Apr 14th, 2004, 8:15pm on 04/14/04 at 20:07:32, nancyc wrote:
YES!!!!!!!!!!;;D ;;D ;;D ............................jonny |
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Title: Re: WHAT WOULD YOU DO? Post by Kevin_M on Apr 14th, 2004, 11:11pm on 04/14/04 at 19:55:57, jonny wrote:
Hey nancyc, Touchy subject, advising people, but I am stupid enough to know myself. I tend toward the slow down taper after about two weeks pf, though my doc says two months. I am eager to not be dosing when I'm pretty sure its episodic adventures with me have set sail for another poor victim. I am not a risky person and the thought I may be inviting it back when it has been beaten makes me not want to be foolish. I've judged a slow down taper before when I felt confident and luckily haven't opened the door to negative consequences so far. Do what you feel right with that won't make you worry. Man I hope you may be liberated from these. nancyc, I miss your *smiles*. Been about three years but I remember well my first cluster buddy!!! If you remember... I'll be in Nashville. Kevin M |
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Title: Re: WHAT WOULD YOU DO? Post by nancyc on Apr 14th, 2004, 11:15pm Kevin, Forget? Are you kidding? Say a little prayer that all goes well so I will make it to Nashville OK? :)nancyc |
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Title: Re: WHAT WOULD YOU DO? Post by Jimi on Apr 14th, 2004, 11:18pm I gotta agree with Kevin and Jonny. I too hate to be on those meds and I always cheat and try to come off of them too quick. That is a tough call. I have been pain free for 4 years now and med free as well. But you are, or were chronic, and I understand your fear. Good luck on your decision. Also, I will be in Nashville as well and I hope that you can make it. |
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Title: Re: WHAT WOULD YOU DO? Post by Charlie on Apr 14th, 2004, 11:31pm Great to see you Nancy. I'm with Jonny too. You'll know what to do. I never stayed on CH drugs but then I only had Inderal Glad things are looking up too with the offspring. Charlie |
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Title: Re: WHAT WOULD YOU DO? Post by Kevin_M on Apr 14th, 2004, 11:45pm on 04/14/04 at 23:15:07, nancyc wrote:
Sorry I didn't put enough effort into getting to Atlanta when you were there. Hoping prayers and intervention perhaps divine or otherwise will help. Be talking to you. Your butt in Nashville would be devine. ;;D Kevin M. |
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Title: Re: WHAT WOULD YOU DO? Post by Edna on Apr 14th, 2004, 11:45pm Nancy, so glad to hear you've been occupied with family time. Great news to hear your son is home!!! Hug him for me would you!! Even greater to know that you've been pf. That gives us all courage. Not sure what advice I can offer more that what has already been sent to you. Truly hoping you are indeed a Charlie, heaven knows we can always use more like him around!! :) Good luck with making the decision, and I kinda really like jonny's advice. Hugs and smiles for you now, EDNA |
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Title: Re: WHAT WOULD YOU DO? Post by Turts on Apr 15th, 2004, 8:14am Quote:
ONCE A CLUSTERHEAD ALWAYS A CLUSTERHEAD!!!! Since you have felt the pain (either yourselves or through other, sending a big Thank You to the many great supporters out there) you will always be a clusterhead as you now have a clusterheart too. Nancy C, As jonny stated take it easy on the taper and ramp if required. Take care Turts |
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Title: Re: WHAT WOULD YOU DO? Post by Mahle421 on Apr 15th, 2004, 8:42am I would not come off the meds. But if you wish to do so, do it slowly, especially if you are on steroids. Cutting steroids off completly can shut down the system. If you are on verapamill there are little side effects compare to the pain of a CH. Maybee start cutting the drugs that change who you are. A good saying is "Why fix it if it is not broken?" I am not a doctor.... just a medic.... but I do know my way around medicine pretty well. FYI I am an episodic suffer. I am lucky.... If I was smarter than I am, I would not stop taking the verapamill. Best of luck, Jason |
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Title: Re: WHAT WOULD YOU DO? Post by Ree on Apr 15th, 2004, 8:49am Hey Nancy C...............How the heck are you???? Well it sounds like you finally got the remission you deserve... I'm with Jonny if you think you are ready then try to taper off... slowly like knock out one pill at a time for a couple of days... see how ya feel etc... We are hoping you are through but remember there are people here with bigger remissions than that 20 month one you have been blessed with MY Dave's is about 3 years between... God bless Good luck and Call me sometime.........................ree (I love you!!!) |
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Title: Re: WHAT WOULD YOU DO? Post by nancyc on Apr 15th, 2004, 10:37am You are definetly right about Once a clusterhead , always a clusterhead...i have worn this TFH for 25 years now...seems like it is stuck to my head after all that time..along with my heartstrings to you people... ;;D Ree, you gave me food for thought, many have had remissions longer than me only to find out the beast was only sleeping....My dilema is not an easy one...After being on every medication known to clusterville, I was put on the lowest dose of the duragesic patch along with Topamax....I have never had to increase the patch so I can't taper off of it...I guess I am too scared at this point to take a chance even though being med free would be great. I only wonder what the odds are of me outgrowing these things??? Thanks for all the wonderful feedback...It is nice to be back home. :)nancyc ps Kevin, my ride to the convention just cancelled so send up some good vibes so I can make it...I want my butt there too LMAO. |
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Title: Re: WHAT WOULD YOU DO? Post by minnie on Apr 15th, 2004, 11:28am Nancy, I am so happy to hear your pain free .Everyone has given some great advice.Please keep us updated on how your feeling.we worry, you know.I hope something comes through and you can make it to Nashville .You were one of the first people Billy and I started E-mailing and you will always have a special place in my heart.Please take care and stay in touch. Minnie |
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Title: Re: WHAT WOULD YOU DO? Post by Karla on Apr 15th, 2004, 2:15pm Nancy I didn't feel any withdrawal symptoms until day 3 being off the patch. I would think that by then you would have experienced your ch kicking back in or very shortly thereafter. I don't think you would have to suffer long before you find out if they have returned. I quit the 50mcg cold turkey. You can do it to. It just felt like flu like symptoms at worse or a hangover feeling. You can do it! Or talk to your dr about tappering you off it slowely. They can either put you on methadone to tapper you off of it or oxycodone. Again you will be able to tell soon enough which end is up. Good luck and I will be praying for you. |
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Title: Re: WHAT WOULD YOU DO? Post by bobkip on Apr 15th, 2004, 2:51pm Hi Nancy, Glad to hear your guy is back and that you're pf. Until the beast came back last January, I had been pf since Atlanta, 2001. Thought I had outgtown the CH but no, it was just sleeping. Fortunately, it was a short cycle, it ended the first week of March. I had quit the patch (25 mics) last May with absolutely no side effects but still on a low dose verap (120 mg). The verap also helps control my blood pressuer so I'll stay on it. I'd go with jonny's advice and do a taper but also think you should run it by your doc. Best of luck. Kip |
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Title: Re: WHAT WOULD YOU DO? Post by Ann on Apr 15th, 2004, 6:57pm Nancy!!! That is excellent news!! Glad your son is home safe and sound. As for tapering...when was the last breakthrough headache? If'n it hasn't been more than 6 months...I wouldn't try. I've been pf since december 21st. I've started tapering off my sansert this month to be totally med free by May 1st. I'm suppose to stay off the meds for one full month. So far it's been pretty good...small headaches come and go. (btw, it's been one year since I quit smoking! haha ya proud of me or what?) Good luck and let us know how it goes. hugs Ann |
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Title: Re: WHAT WOULD YOU DO? Post by Leesa on Apr 15th, 2004, 8:42pm Sis, Im glad your PF I hope and pray it stays this way for ya. In case I havent told ya in awhile I LOVE YOU!!!Check with your doc and see what he/she says about it. Then just do what ya have to sis. Taking meds when and if you dont need'em sucks and if ya dont need/ or have to take them then dont! But check w/ doc first!! BTW- You not make it to convetion?? :o :o You better cuz I got a BIG surprise for ya so you MUST find a way to get there sis!!! Sis check the board and see whos coming from your neck of the woods, then you can get there. U just gotta come sis!!! It wont be the same with out there!!! Love and miss you lots, Leesa |
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Title: Re: WHAT WOULD YOU DO? Post by nancyc on Apr 16th, 2004, 12:15am My Doc says absolutely not...my breakthrus have not been that long ago...I think it is just knowing I have to put the damn patch on every three days to control this thing...but i guess it could be worse...I can remember the days when I could not drive a car due to the amount of antiseizures i was on....Hey, Kip, I am still taking Verap too...helps with my b/p ...Ann, I am really really proud of you, sis! I am still smoking like a smoke stack! And dear Leesa, I am banging my head against a wall here trying everyway I can to get to the Convention..I have not given up yet! I am praying about it..seems I get better results when I do that....I cant wait to see that baby of yours, sis...One thing I did want to tell you guys is I worked on my clusterhead scrapbook last nite..Brought back some neat memories of all of you...These last few years with all of you are priceless...Thanks for being here for me...Sorry I had to leave for awhile but my son and his family needed me around ....Thanks for all the prayers you sent up for Stephen...they were definetly answered..... ;;Dnancyc |
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Title: $64000 question Post by rumplestiltskin on Apr 17th, 2004, 9:17am ...a lot like asking "how do you come home from Iraq alive." You do yer best....play the hand yer dealt...you and I have been at this game long enough to know how funky it is to tell each other which cards to discard....and which to pick up. I'm on the "you'll never know till ya try" team. We have an even record of wins and losses...butt...we still believe "it's how ya play the game" that matters. I'm sure you look just as fashionable with the patch as without. Lovely to know you have had PF time and that yer hero has returned home safely. Tomorrow never comes. Walk in the sunshine den |
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Title: Re: WHAT WOULD YOU DO? Post by Cerberus on Apr 17th, 2004, 11:52pm Jonny makes a damn good point... Quote:
NanC getting pf time is doubly good AND STEPHEN COMING HOME IS DA BOMB!!!WOOOHOOO! may the good stuff keep flowin to ya Ramon |
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