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Title: Pain Medications that work Post by KipBurbank on Sep 16th, 2003, 5:50pm To avoid taking so many shots of Imitrex I need to find a pain medication that really kicks ass. I can't bother with OTC stuff. Vicodin is too week and screws with my head. I tried Stadol and it was horrible made me feel nervous and sedated all at once. If I knew more I could ask the Doc to let me experiment with the heavy duty stuff, trouble is, I don't know what the heavy duty stuff is. Since most of mine are at night time, bed time, it really wouldn't matter if it makes me groggy or whipped up or anything. As long as I could sleep. A nights sleep, that would be so choice. |
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Title: Re: Pain Medications that work Post by jonny on Sep 16th, 2003, 5:54pm 02? |
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Title: Re: Pain Medications that work Post by catlind on Sep 16th, 2003, 5:57pm Kip, duck and cover hehe. You have opened yourself up for some serious lectures with this. In the experience of MOST clusterheads, there is no pain medication that will help you out for any long term use. So far, (and I am NOT a doctor) the only results I've heard of with narcotics are with the duragesic patch and straight oxycontin. You will find that your head will be screwed up consistently with taking any of the strong narcotics out there. While you have to do what you have to do, PLEASE be very careful about taking narcotics, they truly are not effective for CH. If you really really want to do something that will help your head and have exhausted all normal medical avenues, you may want to consider shroom therapy. You can read more about it at clusterbusters.com or read through some of the posts on the med section. This treatment is illegal and not for everyone, and there is no guarantee. It has worked miracles for many folks, and they will tell you everything you need to know if you choose to use this avenue. I am not advocating the use of illegal means to manage your CH, however each of us must do whatever we need to do in order to manage this affliction. Narcotics are a dangerous road to travel, I know I travelled it and went through a couple of weeks of hell getting off them. You will hear many similar stories, and you will be told outright that narcotics are not effective methods of treatment for this. Even the CH experts will tell you it's not a viable long term treatment. Cat |
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Title: Re: Pain Medications that work Post by Prense on Sep 16th, 2003, 5:57pm Yeah, definately O2! |
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Title: Re: Pain Medications that work Post by 5-string on Sep 16th, 2003, 6:16pm Yeah.....what Catlind said.. The "hard stuff" can add a whole new hell to some,and your head will still be on fire. At least that's been my humble experience. Try 02. ...Mark.. |
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Title: Re: Pain Medications that work Post by UnsolvedEquation on Sep 16th, 2003, 7:17pm The 'hard stuff' will only make you groggy WITH ONE HELL OF A HEADACHE ! Just face it, there is no pain med that will help (at least it wont help me). Except of course being knocked unconcious with about 100 mg of Demerol via IV or maybe 2 - 4 mg of Stadol via IV. And you can't get that 'to go' ... it has to be after an hour or more wait in the ER. By then ... I've already took the Imitrex injection. |
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Title: Re: Pain Medications that work Post by Prense on Sep 16th, 2003, 7:22pm on 09/16/03 at 19:17:12, UnsolvedEquation wrote:
Demerol made me not give a shit that I still had a HA. ;D It was some time later that I went nighty night...for ummm...a long time. ;D |
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Title: Re: Pain Medications that work Post by Miss_Deleny on Sep 16th, 2003, 7:25pm Ain't that the truth Prense!!!!!!! :P |
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Title: Re: Pain Medications that work Post by Prense on Sep 16th, 2003, 7:26pm on 09/16/03 at 19:25:35, Miss_Deleny wrote:
Uh huh. ;D |
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Title: Re: Pain Medications that work Post by UnsolvedEquation on Sep 16th, 2003, 7:29pm It takes ALOT for me now. I use to get relief from a small amount. Now I need more and more everytime. That sucks !! Doc gives me a BIG dose and comes back in 5 minutes...it's always the same " You feel better ?"... Then I say " YOU MF'ER ... GET ME SOME PAIN MEDICATION NOW !!"...A few minutes later, and another shot...I'm snooozin' ;D |
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Title: Re: Pain Medications that work Post by Elaine on Sep 16th, 2003, 7:33pm Now you talking about a hell! If you take pain meds and your groggy and a cluster hits. Guess what You will be fighting that cluster in your weekest form. Not only will the pain be there but it will last longer. Thats what happen to me. I can remember all I wanted to do was sleep. You have to get sleep! I know some are afraid of sleep but you got to get over that. You can stay up all night long and you will still get hit. It will be twice as bad, cause your tired. Any sleep is better than none a hour two hours get it when you can. When I learned this I started to deal better with my clusters. Fighting a cluster druged is like not being able to move and people beating you. You can't fight back like that. |
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Title: Re: Pain Medications that work Post by Patrick_A on Sep 16th, 2003, 10:49pm Prednisone and Verapamil stopped my cycle in its tracks, but Imitex was the only abortive i ever found to work for me. Pain free for 3 weeks now, Patrick |
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Title: Re: Pain Medications that work Post by cootie on Sep 16th, 2003, 10:53pm Yeah even tho I'm a supporter I have seen what Brad goes thru and don't think there is an effective 'stat' pain killer fer CH that works other then make ya defenseless and suffer a different hell and it prolly last longer and get hit more cuz of the stuff. Suma the hard stuff has helped me with my back and migraines from it.....but I don't take it daily cuz " I know better ".....and I appriciate the break when I do. It's a dam tough world out there........Pam that knows it all too well |
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Title: Re: Pain Medications that work Post by Charlie on Sep 16th, 2003, 11:00pm Damn sorry you have to put up with this horror. Here are two links: One for a technique I found effective and a second link to a description of this disease which does a wonderful job explaining to employers and others that this has nothing to with what is thought of as a “headache.” http://www.netsync.net/users/charlies/ http://www.ouch-uk.org/ch/note_colleagues.cfm Good luck. Charlie |
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Title: Re: Pain Medications that work Post by Mark C on Sep 17th, 2003, 2:02am From O.U.C.H. (http://www.clusterheadaches.org/) The pain of CH builds up very rapidly to such an excruciating intensity that most oral agents are absorbed too slowly to cure the pain within a reasonable time. The most efficacious abortive agents are those involving parentral or pulmonary administration. (http://www.clusterheadaches.org/library/general/management_of_ch.htm) Subcutaneous sumatriptan (6mg) is the drug of choice in abortive treatment of a cluster attack. It has a rapid effect and high response rate. In CH, unlike migraine, subcutaneous sumatriptan can be prescribed at a frequency of twice daily, on a long-term basis if necessary, without risk of tachyphylaxis or rebound. Inhalation of 100 per cent oxygen at seven to 12 litres/min is rapidly effective in relieving pain in most sufferers. But the high-flow rate oxygen regulator is not available on the NHS, and low-flow oxygen is generally unhelpful. So this treatment is an option only if the patient can afford to buy the high-flow rate regulator. Opiates, non-steroidal anti-inflammatory drugs and combination analgesics have no role in the acute management of CH Cluster Headache Medications (http://www.clusterheadaches.org/medications.htm) And sleep would be very nice! Good Luck |
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Title: Re: Pain Medications that work Post by jmorgan52 on Sep 17th, 2003, 3:40am In the past 30 years I have never found a painkiller that even comes close to helping relieve these bastards and I have tried just about everything. Until I discovered the imigran/imitrex injection I always had to just ride them out. I reckon you have more chance of becoming a junkie than finding a pk that works. Try the "imitrex tip" to reduce consumption, or try the O2 like Jonny says. Never tried the O2 myself but it works for many here. John |
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Title: Re: Pain Medications that work Post by stevegeebe on Sep 17th, 2003, 6:15am Kip, Kill the headache. That's all I know. I have a prescription for Oxycontin and I've tried it twice with no effect except to make it a worse experience. It's a bitch. Do what Jonny said. Steve G |
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Title: Re: Pain Medications that work Post by jminmilwaukee on Sep 17th, 2003, 7:19am Ditto on the no true help from pain meds. I did, however, take the Vico during my cycles at about 4 per day just to get by. It did nothing for the pain but made me numb enough, on top of the sleep depravation to get through my work day. Kinda like "yeah, my head hurts but the rest of me feels no pain". The only reason I was able to get away with this was due to the fact that I am episodic. NO WAY could a chronic pull this off without becoming major addicted. After 6 to 8 weeks of daily Vico I would plan my detox by tapering off the frequency and plan for a night or two of "crawling skin syndrom" once I was done. Self detoxing is a blast! Not. Anyway, Vico was a relatively weak pain killer and I am sure the addictive properties increase with the amount of pain killing properties in the pill of your choice. No need for Vico now. Just O2 and shrooms for me but that is another story. jmin |
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Title: Re: Pain Medications that work Post by hdbngr on Sep 17th, 2003, 7:55am Gotta dispute here: A chronic CAN pull it off without becoming addicted. Sorry, but I feel perfectly awful today and this is rubbing me the wrong way! I'm chronic. I'm not an addict. I have been using the Duragesic patch, at 75m mcg, on and off for two years. It won't help with an acute flare-up, but it does help with the daily smaller pain. Medication breaks are crucial, because like everthing else, it will get less effective over time. I do a a voluntary taper, one month at 50 mcg, one month at 25 mcg, then I don't use it at all for 3-6 months. Be prepared for about two weeks of feeling like there are bugs wiggling under your skin as you taper. If that sounds like a small thing to withstand compared to daily CH pain, it may be a valid option. By the way, if you can detox yourself, it is called DEPENDENCY, not ADDICTION. There is a BIG difference. Do most of us have the strength of mind and body to avoid addiction? Yes, we do. But is addiction the worst thing that can happen to a chronic? Not by far. I would avoid blanket statements that no CH sufferer has been helped by narcotics. It's discouraging and untrue. I know several chronic sufferers who use Oxycontin, Duragesic, Mehtadone to help treat constant hits. These are people who don't respond to, or can't take Imitrex. Unfortunately, there is such a stigma attached to narcotic usage on this board, and a few yahoos who screw it up for the rest of us by taking too much, too often, and going to the ER for a sinus headache, that it can't be discussed openly, honestly. V |
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Title: Re: Pain Medications that work Post by aprilbee on Sep 17th, 2003, 8:03am I agree with hdbngr, I take Relpax and 1/2 a Lortab when I feel one coming on, the Relpax aborts the Headache and the Lortab stops that lingering eye pain. I am EXTREMELY careful though to watch my intake of the Lortab, it is very habit forming and the last thing I need is to be detoxing when my cycle is over, I want to enjoy life when its over...Everyone is different though, it doesn't work for everyone, and my Dr. keeps a close eye on me...I'm very fortunate to have a Dr. who cares so much. I am in no way trying to say that anyone is wrong here, I am just stating what works for me in hopes it might help someone else. PFDAN to you and good luck sweetie!!! |
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Title: Re: Pain Medications that work Post by jminmilwaukee on Sep 17th, 2003, 8:19am Sorry hdbngr and aprilbee. Just like a social smoker, some do have the willpower required. My statment should have said "no way could I be chronic and not get addicted". I have a very addictive personality and have seen this to be somewaht common amoungst the CH crowd. How many coffee smoking, cigrette drinking beer guzzlers do we have here? Did not mean to offend. I personally feel that by allowing myself to get to the point where detox is needed that I am physically addicted at said time. For those with the willpower, dependant is definatly more appropriate. (serious, not sarcasm). Just be carefull out there. jeff |
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Title: Re: Pain Medications that work Post by hdbngr on Sep 17th, 2003, 8:30am Thanks Jeff. With the spinal stimulator implant just around the corner, I can hope that this will be my last taper anyway, that the pain medication may become a thing of the past for me anyway. To go episodic would be great. I got ruffled up so fast, I didn't even answer Kip's question. Kip, sounds like you are looking for sleep, rather than pain medication. Some (not all) sufferers have had luck with Ambien. It must be taken at bedtime only (no machinery, cars) and it will sometimes keep you far enough under to sleep through smaller hits, although not a monster one. Good luck and PFDAN, V |
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Title: Re: Pain Medications that work Post by stuey on Sep 17th, 2003, 9:25am Besides Imitrex injections the only thing that has worked for me has been Relpax or some other Triptans. Narcotics like vicodin make me feel nice but don't touch CH pain at all, oxycontin does absolutely nothing for me other than make me seize. I still have not tried oxygen but if I have taken Relpax quickly enough it has aborted the attacks. Imitrex injections work the quickest and I love and will climb a tall moutain to get some imitrex. |
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Title: Re: Pain Medications that work Post by aprilbee on Sep 17th, 2003, 9:38am Jeff, no need to apologize...I am an addictive personality too, I have alcholoism on both sides of my family, so I try to stay away from drinking heavily (luckily I have CH to basically halt drinking altogether) and I am a smoker also...and that's why my Dr. watches over me so closely...I love the way Lortab makes me feel which scares me to death, that's why I HAVE to make a conscious effort not to take if for "fun"...and believe me that is very difficult at times, everyday stresses make me want to just take a couple of Lortab sit in my bed smoke and be all alone with no one to hassle me... What works for one doesn't work for another. We are all the same but we are all also so very different!!! Kip, I hope you find what you need to get some relief! Hang tough sweetie! |
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Title: Re: Pain Medications that work Post by Mr.Happy on Sep 17th, 2003, 10:53am Kip, Reading your past posts........the only items you mention are Celexa and Imitrex, and apparently, the Celexa isn't doing all that much. Before you dive headfirst into narcs, there are Numerous preventatives you need to try, including shrooms (http://clusterbusters.com). As for your 6 jams a day of Trex......sure hope you're breaking that down into 2 mg shots with your own needles or the Injex (http://www.equidyne.com/products/injex30.asp) tool. (Six _full_ loads daily would be enough to make my heart explode.) Think preventatives, not narcs, at this point. More than likely, there's a cocktail out there with your name on it. We're all going to be at this for years to come. Save the narcs for when All Else Fails. Think O2, too....... RJ |
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Title: Re: Pain Medications that work Post by KipBurbank on Sep 17th, 2003, 11:21am Wow, you people are really well versed in meds and I appreciate the shared info. I was stumped about the shrooms thing and it wasn't until the last post that I understood that meant mushrooms. I won't be able to do that because of the illegality and I would have no idea where to obtain something like that. I will ask the Doc for 02 with a non-rebreathable mask, and ask about Replax and Duragesic patch both of which I have never heard of. I know that many of you are in the same boat as me. Last night, it took 3 shots to make it to the morning and another CH is coming on now pumping in the left eye. Thanks for the offered information and the concern I have taken notes and will ask the Doc today. Thanks, Kip. |
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Title: Re: Pain Medications that work Post by Hound_Dogg on Sep 17th, 2003, 12:07pm Kip...Before you ask your Doctor about Duragesic...make sure you research this med carefully & discuss the options with your Doctor. I definitely agree with Hdbngr, that it is used (with success) by some Cluster Sufferers. I have used it in the past & it has definitely been a help. Also since it goes into your system a little at a time, it tends not to give you the normal tired, disconnected feeling normally associated with Narcotics. Since it is in a patch form, it is also harder to be abused. BUT, it's a strong medication. Fentanyl (the drug in Duragesic) is a powerful pure Mu agonist narcotic. It is not a medication to take lightly. Your Doctor may also have reservations about starting you on this strong of a medication without going through other treatments, first. Narcotics should be a last line, "I've tried everything, & nothing helps" treatment. Good Luck & Great Post Hdbgr. I've found someone who understands the difference between dependence & iatrogenic addiction. Jim Jim |
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Title: Re: Pain Medications that work Post by don on Sep 17th, 2003, 2:13pm Quote:
AHHH! Cocktail of choice for me. Straight up or with ice. A little dramamine chaser for nighty nites is perfect. Quote:
What is the spinal stimulator and around which corner do you refer? |
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Title: Re: Pain Medications that work Post by vig on Sep 17th, 2003, 2:46pm gee and I thought vicodin WAS the heavy duty stuff. |
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Title: Re: Pain Medications that work Post by BarbaraD on Sep 17th, 2003, 3:23pm Kip, I know you said the OTC stuff wasn't your thing, but you might try 3 Excedrin Extra Strength along with a cup of coffee and some O2 when a HA first hits. It either aborts mine or it doesn't. But a lot of the time it does and that's what counts. My doc has dosed me with every type of narc on the market and he FINALLY got the message that they just don't work for the pain of CH - they just make it hard to bang my head. I'm chronic and take Topamax to stay in remission (most of the time). It works for me but not for everyone. Most of us on this board are against narcs except as a LAST resort because we've all tried them and know that 99% of the time they just don't stop the pain. The Ambien for sleep is good (most of the time unless a Big one hits). Valerain Root works sometimes as do other herbs. A lot of things work one time and then not the next. It's a crap shoot for all of us. Good luck and we all wish you pain free days and nights whatever you take to get them. Hugs BD |
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Title: Re: Pain Medications that work Post by UnsolvedEquation on Sep 17th, 2003, 5:28pm Ambien for me is like asking for trouble ! So is Valium ! Just thought i'd add my $ .02 worth ;D |
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Title: Re: Pain Medications that work Post by hdbngr on Sep 18th, 2003, 7:53am Don: Your question: The spinal cord stimulator being around the corner was a reference to the occipital spinal cord stimulator implant. I am scheduled for it on October 1. Had the practice procedure done about a month and a half ago. I'm hoping that this treatment will make some, if not all of the medication used to treat CH unnecessary. There are a few chronics out here who have been chasing the implant rainbow for the last year. It seems to offer a chance to excuse ourself from the dance. After almost seven years, I have grown weary of my dance partner. V |
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