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Title: Narcotics Post by unsolved1 on Sep 8th, 2004, 6:26pm I've had clusters for a LOOOONNNGG time. Nothing really helps except for Imitrex injections. I've never had any narcotics help (unless it was a mild attack) ... and I've had some pretty heavy duty stuff at the hospitals. Tomorrow ... I'm going to pick up a prescription for Actiq Lollipops. I DO NOT think it will help with a full blown CH ... but I am going to try it for a 'less severe' headache. The goal is to use less Imitrex. Of course, if it doesn't help at all or makes things worse, I'll discontinue use immediately. I'll post about my experience with this drug since I believe that there is not too many of us trying it. I hope this doesn't make things worse ! :-X Unsolved |
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Title: Re: Narcotics Post by Jonny on Sep 8th, 2004, 6:28pm Good luck Bro! ..........................jonny |
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Title: Re: Narcotics Post by IndianaJohn on Sep 8th, 2004, 7:37pm Good Luck Bro'. But be very very careful. I'm sure you now the risks. Best of Luck John |
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Title: Re: Narcotics Post by E-Double on Sep 8th, 2004, 7:42pm Anything you can do to catch a break go for it!!! I hope you get a breather ;) Hang in there bro...as you always do! Best, Eric |
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Title: Re: Narcotics Post by alleyoop on Sep 8th, 2004, 8:15pm on 09/08/04 at 19:42:10, E-Double wrote:
Ditto! If I'm not mistaken we had a string about this exact same topic a few months ago. I think I posted then that I had tried the Actiq lollypops(along with demerol, dilaudid, etc) with some success. I finally came to the conclusion that even though I was getting some relief, the rebounds were more than making up for it. They're probably not fillable now but I've still got scripts for narcs including Actiq. Good luck Mike! I sincerely hope they give you some relief. Looking forward to hearing how it goes........ ....................................alley |
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Title: Re: Narcotics Post by vietvet2tours on Sep 8th, 2004, 8:16pm I been ch since 1981,tried dilaudid,oxycontin,oxycodone,percodan.percocet,darvocet,darvon and shit off the street.Eight years ago I went in and had a intensive acupuncture treatment it took like five two hour sessions from a traditional chinese acupuncturist,she charged me nothing and i was pf until aug. 10 this year.I was full blown until ten thirty this morning when i went back to her,i walked in she put me on her table and spent two hours pokin me.I have had two small clusters less than ten minutes each, its now seven pm mt. pretty damn fine for something that everyone pooh poohs.Just give it a whack it cant hurt.Fuck the narcotics unless yer lookin to use them recreationally. |
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Title: Re: Narcotics Post by unsolved1 on Sep 8th, 2004, 8:26pm If you're suggesting that I try accupuncture ... Been there and done that ... didn't help . :-/ Thanx anyways Unsolved |
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Title: Re: Narcotics Post by Kris_in_SJ on Sep 8th, 2004, 8:48pm Best of luck Un_Solved! In my way of thinking, even heavy narcotics are worth trying over deep brain surgery (wasn't it you that mentioned that?). Though I'm sure you've thought about it, have you given any serious consideration to the shroom thing? After reading Dave and Miapet's posts, I've considered taking up some serious gardening. Hugs and best wishes for at least 1 or 2 PFDAN! Kris |
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Title: Re: Narcotics Post by unsolved1 on Sep 8th, 2004, 9:13pm I cannot get med free to give the shroom treatment a fair try. I've been trying and trying. I can't do it. :-[ Yes, I am the one who mentioned the Deep Brain Stimulation Procedure as an option for me (possibly in the future). I just ran across this article about it HERE > http://www.medem.com/search/article_display.cfm?path=\\TANQUERAY\M_ContentItem&mstr=/M_ContentItem/ZZZ2A982RFD.html&soc=AANS&srch_typ=NAV_SERCH My neuro's are talking about the Gamma Knife as a possible next step. :-/ I'd rather try some narcotics first. :-/ There's got to be at least a small percentage of chance that it may help some w/ some attacks. ??? ??? ??? Unsolved |
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Title: Re: Narcotics Post by don on Sep 8th, 2004, 9:20pm Quote:
Ping Pong and bowling are recreational. Using narcotics for anything less that a diagnosed medical condition is called "plain fuckin stupid" |
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Title: Re: Narcotics Post by Kevin_M on Sep 8th, 2004, 10:54pm on 09/08/04 at 21:50:12, vietvet2tours wrote:
I think the point is, this is not the only precarious part of narcotics. There are pain treatment centers which make decisions regarding narcotics, it's a tightrope. Kevin M |
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Title: Re: Narcotics Post by pubgirl on Sep 8th, 2004, 11:02pm Mike Don't want to depress you but the latest (obviously not published results yet) from the Italian team came from Zazi who said that she knows two people who have had it done there, one succesful, one not succesful at all. This doesn't seem great odds for a highly dangerous operation which has already killed one person. Wendy |
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Title: Re: Narcotics Post by nancyc on Sep 9th, 2004, 12:43am Seems like alot of docs are trying the Actiq with chs now..my neuro/pain management doc wanted me to try it last week..but , i didnt ....I heard the rebounds are hell..and I have had enough rebounds lately to last a lifetime...CHs you can get rid of with imitrex....Rebounds are like a damn cold, they wont go away until they are damn good and ready..and you are ready to jump off a bridge from them LOL...I guess the reason you get rebounds with the Actiq and not the patch is that the Actiq is so fast acting....and hits so fast...where the patch is slow released....but not recommended for acute pain but chronic only....I just went back on the lowest dose patch for chronic chs and bulging discs problems... :Dnancyc PS keep us posted on how it works please...good luck!....IM me for tips on how to fight the rebounds LOL. |
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Title: Re: Narcotics Post by unsolved1 on Sep 9th, 2004, 7:46am Some of you will understand this statement ... some of you won't: Rebounds are NOT my main concern at this time. (I'd rather have a rebound than a full blown CH attack) My concerns are: (1) Pain control (by whatever means) & (2) Less use of Imitrex If these 2 concerns are NOT helped with the Actiq ... then I will consider it useless. I'll post about this again in a few days Unsolved |
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Title: Re: Narcotics Post by FZfan on Sep 9th, 2004, 7:58am I understand completely. If narcotics, or anything, can get you at least some relief for at least some period of time, I have no problem with it. As for rebounds? If you're chronic, how would you know you are getting rebounds? Good luck unsolved. |
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Title: Re: Narcotics Post by Giovanni on Sep 9th, 2004, 9:56am I surely hope you get into the position one day to try the mushroom treatment--which in my opinion is your best chance of help/relief. Sorry you're being hit so hard. John :-/ |
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Title: Re: Narcotics Post by nancyc on Sep 9th, 2004, 10:40am FZ FAN....I am chronic, and i know I am getting rebounds..."cause rebounds are not CHS."..they are a totally different type of headache....that is what alot of people fail to realize.....That is what I was trying to explain to Unsolved....I was not trying to jinzed his treatment or anything..God knows as I have had to try everything myself....I know the pain of chs....but rebounds are a totally different headache ....You may say you are not concerned about rebounds at this point and I can understand that...but , believe me, when you start having rebounds, you will think totally different about them...They may not have the stabbing pain of chs but believe me, they hurt like hell, and they dont want to go away....Sorry if you misunderstood me in any way...Just wanted to share what has been happening to me lately...it has not been pleasant...Good luck and God speed to you....keep us posted...smiles, nancyc |
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Title: Re: Narcotics Post by don on Sep 9th, 2004, 12:45pm Rebounds are not pleasant but they are surely preferable to getting slammed by CH day in and day out. Hope you get some relief with the lollipops. |
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Title: Re: Narcotics Post by FZfan on Sep 9th, 2004, 12:48pm Thanks for clearing that up for me nancyc. I always assumed rebounds were a repeat of the cluster attack, and if one was chronic I couldn't understand how you could tell a rebound attack from a normal attack. So in that context, rebound really isn't the correct word. Would rebounds then more accurately be described as "narcotic generated headaches"? BTW, I have used narcotics in the past for clusters before I finally got the proper treatment. I never experienced the rebound effect, although the narcotic trip and hangover certainly presented their own problems. |
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Title: Re: Narcotics Post by don on Sep 9th, 2004, 1:42pm Quote:
Thats the understatement of the year. Where would you like me to start? |
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Title: Re: Narcotics Post by catlind on Sep 9th, 2004, 2:58pm Michael, I just finished a one week trial with Actiq. While it does help the attack within about 10-15 min. if you have to use 2 (which they say you can use a 2nd one in 30 min. if the 1st doesn't work) you may find yourself having one hell of a rebound. I understand completely you wanting to lessen the CH, but when I got a strong hit (I can't use triptans of any kind) and I had to use 2 lollipops, I spent all evening, all night and half the next day with a headache that is equal to a migraine. The rebounds I experienced left me equally debilitated as a CH did. That being said, keep in mind that right now my only option is O2. So I can't use a trex shot for the real bad ones if they hit. Using just one Actiq didn't cause too much trouble, so you might be ok with it. It works fast and puts a lot of the drug into your system quickly, which is why I think it may cause the rebound. Just wanting to let you know what to expect, and certainly not trying to tell you not to try it. Let us know how it goes for you so we get some extra data on this one. Cat p.s. dosage was 200mcg |
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Title: Re: Narcotics Post by Karla on Sep 9th, 2004, 10:00pm If that doesn't work try (fentanol) duragesic patches. Several people here have found relief at various doses using this pain reliever. I would highly recomend it. I am praying for you to find some relief real soon. |
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Title: Re: Narcotics Post by unsolved1 on Sep 9th, 2004, 10:30pm on 09/09/04 at 22:00:53, Karla wrote:
Actiq Lollipops are Same drug as the patch. Patch releases slowly, continuously ... where lollipops release medicine quickly, in a larger dose. |
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Title: Re: Narcotics Post by ExPat_jac on Sep 10th, 2004, 3:20am [quote author=unsolved1 link=board=meds;num=1094681664;start=0#8 date=09/08/04 at 21:13:36]I cannot get med free to give the shroom treatment a fair try. I've been trying and trying. I can't do it. :-[/quote] Time to kick your butt here a bit (good heartedly of course.... Look dude...I have been FORCED to be med free because of where I am and my situation.... I have been chronic for over 20 years, and ep since age 7... My routine has been 5 to 7 Kip 7-9 A FREAKIN DAY.... All while attempting to hold a job...in the TROPICS no less!!!!! No Air Conditioning....Not even any freakin ICE for christ sake.... I have spent HOURS crying...begging....and nothing... you CAN do it....you CAN go med free for as long as it takes to go the shroom route..... Hell..if there were the SLIGHTEST chance that I could do this....I'd be shroom king :) But...they KILL people here in this country for that....it's a death sentence, thus not even a remote option.... I have been getting some releif now with neurontin at high doesage...but Bottom line.....the body is a very strong thing...it's the wil dude.... If you REALLY REALLY want to go drug free...you're body WILL let you do it...trust me on this one.... It's your mind that you have to convence on how bad you wish to do it..... Look..people were living with CH headachs long before doctors even knew what they were....without drugs... It can be done....hell..I never thought I could do it as bad off as I am...but when forced and no option, I found I could.....I still die..hell..I had such a killer the night before last, even after building up such hope with the new medication that I came as close to doing the swan dive thing as I ever have..but.... And, if I can put my two cents worth in (looks like I've already put in well over that...lol) Stay as far away from narcotics as possible...I have NEVER read where they do anything but make the CH condition worse...they are a tempory cover at best...and even in the short run just lead to MUCH greater pain...plus now you have a monkey on your back giving more of a hard time.....(I have gone this route also, and I know this is the case with um) Hang in there dude..... Look...do what you feel is best...and sorry for sounding like a know it all and sounding like I am be littling your situation...trust me, I'm not...I feel for your brother... But..if you doubt that you can go drug free and you have the chance to do the shroom thing...(god..if I could do that, I'd almost give up my left....ummm....wait...never mind) I'd do it.... Buddy...it reads as if you *have* the chance to go the shroom route, but just don't think you can go med clean.... haha tell you what...come live with me here for a few months...hell, it's cheap, once you pay your flight out here...you can eat for a month for 10.00....and I promise you'll be med free :)....and then return home and start the shrooms :) Hang in there friend..... Do what you have to do.... But..you can go med. free if you want..it just takes a hell of a will...and you know what? I 'm betting deep down inside...you have more than enough will to do it....you just don't think you do...me, my money is on that you do :) Peace Jac |
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Title: Re: Narcotics Post by Samantha_Smith on Sep 10th, 2004, 11:18am Unsolved-- Good luck with the lollipops. I had great success with the Fentanyl patches for over 3 years (yes, I know there's a delivery system difference between the lollipops and the patches.) Beware that if you use the lollipops often you may develop a physical dependence upon them. I wish you the best of luck and many pain free days and nights! You've suffered long enough and you deserve a break. Keep us updated on what's happening. Samantha P.S. Just wondering....if you had great success with the lollipops would you ever consider using the patches if your doc offered you that option? Again, just wondering. |
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Title: Re: Narcotics Post by IndianaJohn on Sep 10th, 2004, 1:23pm How ya doing bro'? Been thinking about you and hope things are going well. |
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Title: Re: Narcotics Post by Jimmy_B on Sep 10th, 2004, 2:34pm Good Luck...one word of advice...but ask your Doc first. I use OxyIR when in cycle & found Narcotics work best for CH when you can take them about 1/2 hour before the attack. I know we're not fortune tellers, but some attacks happen at the precise time every day. Not sure if it's different for chronics...but for the ones that come like clockwork, I take the pill about 15 minutes to 1/2 hour before. Just make sure to talk to your Doc, first. Don't deviate from the Doc's advice when it comes to opioids. Jimmy |
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Title: Re: Narcotics Post by unsolved1 on Sep 10th, 2004, 7:41pm Next attack gets the lollipop thrown at it first !! (Imitrex will still be by my side) Wish me luck !! Unsolved |
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Title: Re: Narcotics Post by BlueMeanie on Sep 10th, 2004, 7:45pm Good Luck Unsolved. Hope it works giving you another option. A lollipop for a weapon sure sounds about as bad as a Headaches for our condition. ::) PF to ya. |
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