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Title: Okay, I am going to take on a very controversial Post by Jim R on Sep 4th, 2002, 2:15pm issue - pain meds. I know most of you here swear up and down that pain meds have no place in the treatment of cluster headaches, but I am going to play devil's advocate here (with no small expereince myself in this stance)... How about those of us who cannot take imitrex or one of the other other triptans or those for which the plethora of other drugs have not worked - would you wish the pain of a KIP 10 on them? Yes, maybe sometimes one gets a rebound, but maybe, sometimes one gets relief - I have on multiple occasions - and don't get me wrong here - I am not at all pushing narcotics or other pain relievers and I DO relaize the inherent dangers on addiction just as cancer patients must when they go into pain programs to try to get a quality of life out of their remaining time. I know when I was in the ER the other night (and by the way, in my many times in the ER with KIP 9-10's, I have never been offered imitrex or any other triptan - there's an educational opportunity for us...), I would have taken ANYTHING to stop the pain and damn the risk of addiction and YES it DID stop the pain and I didn't have a rebound and NO, I didn't feel the need to have it again the next day. So, to summarize, I do believe there is a role, however large or small, for pain meds in CH and yes, there are RISKS just as there are in life but knowing these beforehand let's us make intelligent decisions about our choices. Okay - there it is - take aim and fire. Jim R |
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Title: Re: Okay, I am going to take on a very controversi Post by Jim R on Sep 4th, 2002, 2:19pm BTW - I am not addicted and only ever take pain meds if all other methods have failed. But IMHO, there is a place for them - to handle pain. Jim R |
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Title: Re: Okay, I am going to take on a very controversi Post by NancyMcFree on Sep 4th, 2002, 2:32pm Jim,`I think the opinion on pain meds is that they should be a last resort, not the first line of defense. Since there are other abortives like Imitrex and o2, I would recommend to anyone that has not tried them to try them before the pain killers. That being said, I would consider taking ANYTHING to get rid of a KIP10 so what does that tell you? You gotta do what you gotta do ....... and just be knowledgable about the risks involved. |
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Title: Re: Okay, I am going to take on a very controversi Post by Karla on Sep 4th, 2002, 2:47pm I agree with Jim 100%. I have tried: Preventatives tried 1. Lithium 2. Indocin 3. Verapamil 4. Thorizine 5. Depakote 6. Propranol 7. Amitriptyline 8. Lupron 9. Naproxen 10. Welburin 11. Topamax 12. Neurontin 13. Meclizine 14. Celexa 15. Effexor 16. Serzone 17. Nifedipine 18. Clonadine Abortives that don't work 1. Oxygen 2. Migranal ns 3. Maxalt 4. Midrin 5. Ergotamine 6. Mortin or tylanol 7. Amerge Abortives that are currently working 1. Axert (half hour to kick in) 2. Imitrix ns (6 min to kick in) I prefer this method! 3. Zomig (half hour to kick in) Rescure meds that don't work! 1. Fiorinal 2. Fioricet 3. Butalbital 4. Tylanol-3 Rescue meds that will sometimes work if I rub the magic lamp the right way and recite the proper incantation. 1. Vicadin 2. Percacet 3. Stadol ns I have tried everything and am tired of being hit 8x a day and being in pain 16 hours everyday while being chronic to boot. I am just looking to get a quality of life back and think you got to do what you got to do to get pain relief. But notice, I did try an awfull lot of things before hand. I have found morphine and dilaudid to kill my ha and usually will give me 2 or 3 days of pain free living afterward. I will continue to try preventatives as new ones come to mind or available on the market. But don't rule narcotics out completly, please. Possible Solutions 1. Oxycontin 2. MS-Contin 3. Morphine 4. Methadone 5. Dilaudid |
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Title: Re: Okay, I am going to take on a very controversi Post by Jim R on Sep 4th, 2002, 2:52pm Nancy, I couldn't agree more with you and if I didn't make that clear in my posts, let this clarify it. Always try to avoid pain meds, particularly narcotics because of the inherent risks (BTW - one should see what plain 'ole acetominophen can do to ya!). I mean, man, I'm already on so many preventatives which seem to change week to week, and then I always try O2 (doesn't always work for me), but at this point that's it for the abortives I have available. If the KIP level keeps rising, it's off to the ER, where the old hypodermic comes out (thank GOD at that point) and luckily I get some relief because if I didn't I would surely do myself in. So, count your blessings if imitrex works and you can take it or if some other drug is working for you either as a preventative or as an abortive... Other CH sufferers may not be as fortunate and NONE of us want to be in pain, right? Jim R |
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Title: Re: Okay, I am going to take on a very controversi Post by Jim R on Sep 4th, 2002, 3:06pm Wow, Karla - I thought I had tried a lot: antihistamines (non-prescription) verapamil indomethicin bellergal space tabs lithium topamax clonodine duradrin ophenadrine percocet vicodin norflex stadol ns excedrin migraine (non-prescription) There are probably more...narcs usually taken with phenergan or compazine and again, only as last resort. Current regimen: verapamil 240 mgs. x 2/day Catapres 0.1 mg. x 2/day O2 then on to pain meds. When my blood pressure is under control, I will be able to try Amerge... Jim R |
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Title: Re: Okay, I am going to take on a very controversi Post by Drk^Angel on Sep 4th, 2002, 3:06pm All I have to say is, when I have a real screamer, I'd do just about anything to make it stop. I haven't tried all the abortives out there yet, but the ones I have tried, only O2 has had any effect. Luckily, the verapamil is still working for me, so I haven't had too many attacks, and when I do have an attack it's not as bad as normal, so I haven't any need for the hard stuff right now. But I'd gladly take a Perc, if it would work to stop the pain (which it doesn't...) if the verap stops working, and my doc continues to have troubles finding an effective, portable abortive. PFDAN............................. Drk^Angel |
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Title: Re: Okay, I am going to take on a very controversi Post by echo on Sep 4th, 2002, 3:17pm Well written JimR. I don't plan on taking any shots at you over what has been written. As far as abortives and preventatives go I've taken a med timeout. Nothing specific or in combination seemed to work anymore. O2 was never overly effective for me either. At present when I get a head blaster I hit the Stydol NS (watered down to lessen the affect). May have the stoner shadows for a while but no rebounds. Yes -- I have been addicted to NS a few years in the past. Thankfully I have not craved it afterwards. Do I worry about being addicted again? Not really I can't get the endless supply I used to be able to get and you can't get addicted on a bottle a month. |
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Title: Re: Okay, I am going to take on a very controversi Post by Slammy on Sep 4th, 2002, 3:18pm The problem is that pain meds only mask the pain, they don't treat the headaches. But if none of the abortives worked for me, I'd take anything that reduced the pain that I was feeling. Fortunately, Cafergot works effectively as an abortive for me. I think the key is that pain meds should be a last resort in dealing with the pain. I'd try every abortive known before I would rely solely on pain meds like vicodin to deal with CHs. Slammy 8) |
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Title: Re: Okay, I am going to take on a very controversi Post by Jim R on Sep 4th, 2002, 3:29pm Slammy, Sometimes masking of the pain is acceptable. Masking, dulling, obliteration, elimination - as long as it is less than it was, is usually okay by me and yup, I agree - last resort, but so far at least, I can't take the triptan abortives because of a strong family history of heart disease - because when those triptans are busy constricting those cerebral arteries, they're contricting one's coronary arteries as well (and all the other arteries in one's body) and therein lies the problem and the risk for me and my 47 year -old, non-exercised, smoker's body. I don't want to have a myocardial infarction trying to relieve my CH. And I tried most of the other non-triptan abortives, so I have few options left and they're dwindling pretty damn rapidly. Sometimes when I am forced to take a narc, it does work or it works suboptimally, but even some relief is just that and with a 10, it's appreciated for what it is. PFDAN's to you. - Jim R |
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Title: Re: Okay, I am going to take on a very controversi Post by echo on Sep 4th, 2002, 3:53pm Just to add that I only use Stydol NS when I can't friggen take the pain any more. I normally deal with whatever the 1st or 2nd one deliver, I know that within 30 to 45 minutes they will end. It's when I'm facing another 8 - 10 for the next 45 that I cave in and take a snort. I know I'm one of the few it works for -- 10 seconds and it's over. God I'm thankful for that! Reefer anyone? That always did the trick back in the 70's. |
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Title: Re: Okay, I am going to take on a very controversi Post by Slammy on Sep 4th, 2002, 3:58pm My heart goes out to you and all the others out there that have not found any relief with the known abortives. It recalls my days when I used elavil and vicodin to get through my cycles. I pray that you all find some abortive or preventive that will ease your pain. Slammy 8) 8) 8) |
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Title: Re: Okay, I am going to take on a very controversi Post by oringkid on Sep 4th, 2002, 4:37pm My only REAL problem with the narcotics is that they never worked for me. Didn't even mask the pain. Some made me sick as a dog and I still had the pain as well. If nothing else works for you and you get some relief from the pain meds and it doesn't make you sick, by all means, use it, be careful, but use it. I think the main thing most of us are trying to do when we warn newbies off the narcs is to make sure that they try the (for most people) more effective, non-addictive meds before they go straight to the narcotics. Some docs routinely prescribe pain meds for any and all pain inappropriately and it is far to easy to go that route and never even try the other meds. I think most of us understand that there are a few of us out there that have found no relief with anything else. But it should be a last resort. Sherry |
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Title: Re: Okay, I am going to take on a very controversi Post by echo on Sep 4th, 2002, 4:54pm I agree Sherry. CH'ers first need to identify that which will prevent the occurance. Docs are so eager to write scrips for pain control. When I hurt my back anb the doc wrote the script to eliminate the pain. It was hard to know when I was adding damage to my back when I couldn't feel the inital pain to begin with. It's been a long day -- hope I make some sence. If not -- everyone can fill in the blanks and shoot me later. |
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Title: Re: Okay, I am going to take on a very controversi Post by Jim R on Sep 4th, 2002, 4:58pm In a similar vein to this, I do not understand (or maybe I do - $?) why insurance companies limit the number of injections of imitrex, amerge. zomig pills or other triptans, but approve narcotics like they're candy and will pay for them forever in seemingly endless quantities...what IS the deal? As I said, never once have I EVER received anything other than narcotics in an ER or even offered it or had a discussion about it - wouldn't you think some knowledgeable doctor would know enough, care enough to broach this alternative treatment with me? I mean, where does an insurance company get off dictating you can only have your pain relieved X number of times per month unless you take narcotics then we'll let you relieve it XXXX times per month?! There is something wrong here...and it's not medical concern for subscriber's well-being Jim R |
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Title: Re: Okay, I am going to take on a very controversi Post by Charlie on Sep 4th, 2002, 5:05pm I'm with most of you. I'd have done just about anything to kill my pain. It's probably a good thing that stuff wasn't around. The thing about every day pain killers and no doubt others is that it takes too long for them to work. I don't have much experience with more interesting stuff other than Demerol in the hospital. That was fun too. Charlie |
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Title: Re: Okay, I am going to take on a very controversi Post by 2late on Sep 4th, 2002, 5:08pm here's my take, i'll try anything out there to ease the pain, glad i found some things that help me, if not i'd be tryin' anything, legal or otherwise. i really feel for people who get no relief.damn kar, you've tried it all,poor kid :'( ...............2late |
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Title: Re: Okay, I am going to take on a very controversi Post by catlind on Sep 4th, 2002, 5:11pm I've tried a list nearly as long as Karla's and Jim's, and because of heart and bp issues, I can't take many of the meds that seem to work for most as a preventative or abortive. The O2 has been a god send, it will handle most kippers until I hit the 6 range. Then I'm in trouble. I'm on Celexa as a preventative and have actually had fairly decent success with it....I have to wonder if this cycle would have even hit if I hadn't stopped taking it. So for me, and even the neuro went through everything that's been tried and that I can't take and said, Celexa, O2, and Tylox. For me the Tylox takes a long time to kick in, so most times it's not very helpful, vicodin has worked as well, and faster. If I get a 9+ I go to ER and get a shot of Nubane and steroids and O2 there as well. I usually leave with a 2 or 3. The pain meds/narcotics have never completely aborted the pain, but they have certainly made them more tolerable. Other things I do when in cycle, and to help prevent rebound is Aleve morning and night, and 95mg of Aspirin with the O2. Believe it or not, I've had better luck with plain ole bayer than the narcotics, but only if I catch it early. My problem is that waiting....asking myself ok is this gonna be a little kipper, or am I gonna hit 8+. I haven't found a way to know yet, other than speed of onset...if it takes 5-10 min. to affect me it's a kipper, and needs nothing other than O2, if I am at a 4-5 in 2 min. I can be pretty sure I'll keep going up fast. But of course, it hits too fast to get a pain med to stop me from getting to the 10. For me unfortunately, my treatment regiment is O2, Celexa, and Tylox. That's my prescribed treatment. When hubby gets back from his deployment, I plan on going to walter reed headache clinic. Cat |
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Title: Re: Okay, I am going to take on a very controversi Post by Drk^Angel on Sep 4th, 2002, 5:38pm Narcs never really helped me much. I've never had much luck with any pain relievers or pain killers. Vicodin was a complete waste of time for any pain (didn't even help with I sprained my hip a few years ago). 3 or 4 Percs will give me a good "Don't give a damn" buzz, but never touches the pain of the beast. I never take Tylenol, Motrin, Aleve (especially not Aleve... Was on naproxen before and I had about every non-lethal side effect), or just about any other OTC pain reliever. I've taken Darvocet, codiene, the shit mentioned above, and prolly a few other prescription pain-killers. They don't even help with my TTH or any normal bumps and bruises, and they definely don't help with the CH. For ppl that can't find anything else, and that these work for, I say use 'em, but they'll not be an option for me if I can't find an abortive. (Damn I talk too much) PFDAN........................ Drk^Angel |
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Title: Re: Okay, I am going to take on a very controversi Post by Bob P on Sep 4th, 2002, 6:14pm "Opiates, non-steroidal anti-inflammatory drugs and combination analgesics have no role in the acute management of CH." - Dr. Peter Goadsby I'd have to agree with the doc. I've tried a couple of them over the years and they didn't do squat. |
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Title: Re: Okay, I am going to take on a very controversi Post by jonny on Sep 4th, 2002, 6:29pm Be cause of the way I look every Doc way back up to this day thinks im looking for pain meds. probably the first time in my life that the way I look worked for me. Instead of giving me pain meds they concentrated on findig the right prevenitive combo which we did. Still sucks to walk in a new Doc's (no matter what for) office to see that look once again, makes me want strangle while screaming "I DONT DO DRUGS" Sure, I could cut my hair and put a long sleeve shirt on but I wouldnt be me would I. and why the fuck should I have to?....Its not fair that you cant hurt people like that without going to jail :) ...................jonny |
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Title: Re: Okay, I am going to take on a very controversi Post by domm on Sep 4th, 2002, 6:35pm Good subject and replies. My own thinking is people need to do what they have to do to relieve their pain. Each of us takes a risk every time we open our mouths to pop a pill or reach for a hypo. Life is full of risk, the question is how much do you want to take? Banging your head on hard things is risky, yet we've all done just that. My dad ended up with bleeding on the brain after smacking his head on a car door. Needed surgery and weeks in the hospital to drain away the buildup. Personally, I am going to use whatever weapon I can find. If the Verapamil, O2 and Imitrex quit working, I will find something else. Jim and all - Hope you find relief domm |
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Title: Re: Okay, I am going to take on a very controversi Post by Linda_Howell on Sep 4th, 2002, 6:38pm away from the subject a bit........ NO! you wouldn't be you Jonny. And NO, you shouldn't have to. Warrior |
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Title: Re: Okay, I am going to take on a very controversi Post by Jim R on Sep 4th, 2002, 6:56pm Here's a good example -today, I have taken my prescribed 2 pills of 240 mg. verapamil and 2 pills of catapres and have a relatively mild CH now - maybe a 3 and it's been nagging me on and off for about an hour. I've tried ditching it three time with O2 with no sustained luck - it comes right back after about five minutes. Now what do I do at this pain level? What do I do if this CH decides to quickly escalate to an 8, 9, 10? Of course, I would try O2 again, but given it's lack of success tonight, it's doubtful if it will suddenly kick in. Up in my safe, I have my only other approved (have Amerge but cannot yet take that until neuro gives the"go") abortives - Stadol NS and Percocet. ... ??? I've had two days like this - I don't know if catapres takes time to build up in the blood, but...what else can I do when I know one of these two pain meds will probably help me to some degree? Jim R |
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Title: Re: Okay, I am going to take on a very controversi Post by catlind on Sep 4th, 2002, 6:59pm on 09/04/02 at 18:14:33, Bob P wrote:
I agree with you Bob, the don't do anything for the treatment of CH, but they can help with the management, if nothing more than to take the edge off so you don't go play chicken with a tractor trailer. What Drk mentioned though, and few other things in this thread, have me wondering about something. One of the blood tests they did for me was to do with the pituitary gland and hypothalamus. There is something called a peptide that governs opiate receptors. Mine was 34 and normal is 144+. I'll have to find that page again, it was all in medical mumbo jumbo, you know the ones, beta this and alpha that, and requiring a medical dictionary for every other word. It makes me wonder if that's part of why barbituates and opiods do no good for even the general stuff....Hell I've been given 25mg Toradol, 100 mg demerol, 20 mg nubane all in one ER visit and not only did it not get rid of my headache, I walked out fully coherent....stoned, but coherent. Cat |
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Title: Re: Okay, I am going to take on a very controversi Post by Linda_Howell on Sep 4th, 2002, 7:05pm Jim.................. You said, and I quote, "my only other abortives are Percocet" Hon, Percoset is a controlled substance. A pain pill.!!!!!!!! Don't want to make you mad at me, honest I don't. Have you tried ice packs? or in some cases heat? O.K. I'm gonna shut up now. I cvertainly don't want to make you or anyone else mad at me.. Try other stuff. I use a fan at high level. I've been known to have someone drive me around at midnight in the car, head sticking out the window in the middle of winter, just to get the air... O.K. I'm really gonna shut-up now. P.S. "shut-up Linda" !!!!!!!!!!!!! |
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Title: Re: Okay, I am going to take on a very controversi Post by Jim R on Sep 4th, 2002, 7:17pm Linda - I'm not at all mad, but I did mean those were my only other abortives - yes, prescription pain pills prescribed by my neuro with the understanding that treating CH is not an exact science and that there are many theories as to causality and therefore many treatements...and the fact they are all I have until Amerge comes into the picture. Air conditioning is nice but doesn't change my CH, ice doesn't help, nor heat, O2 sometimes does, sometimes doesn't. When ALL my preventatives have failed (like now- and granted I'm in a state a flux and physician experimentation trying to find the new one or combo that will work this year), these are what's left that will work for me - others may have other methods that work for them. Twenty-four years with these suckers has helped me winnow what works and what doesn't from the non-drug arena and as you can see I'm still stumbling around in the pharmaceutical arena looking for the magic formula to relieve this cycle's pain - Jim R |
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Title: Re: Okay, I am going to take on a very controversi Post by forgetfulnot on Sep 4th, 2002, 7:17pm Quote:
Jim, I have heart problems in my family also, we are the same age, I demanded a try at Imitrex and so my doc hooked me up to an E.K.G gave me a dose and monitored me for about 45 min. I had no coronary reaction at all, been doing them for about six years. Have you really checked out your heart response or are you basing “I’m unable to use Imitrex” on family history? Don't get me wrong, if this other crap don't work, I'm bending over at the ER. But those pills, even morphine either don’t help or sometimes make things worse for me. Lee |
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Title: Re: Okay, I am going to take on a very controversi Post by Jim R on Sep 4th, 2002, 7:30pm Lee, Morphine in the ER made my KIP 9 a 10! Droperidol was the only thing that took it away then. No, it the family hx (my mom - severe heart disease), my EKG/Treadmill/stress test, my high blood pressure, my age, my sex, my smoking hx., my lack of exercise....doesn't add up to "low risk, unfortunately. I told my wife the first time I take even Amerge, we would be parked outside the ER LMAO! ;) Jim R |
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Title: Re: Okay, I am going to take on a very controversi Post by Jabeen on Sep 4th, 2002, 7:58pm Since I am not as experienced in this CH world as a lot of you-I was wondering....I only get my attacks at night-never in the daytime-but when I wake up, my eye on the effected side can ache all day unless I take something. The best I have found )for me) is Fiorcet. It does nothing to help the actual CH, but extremely effective for the residual pain. Is this common to those of you that don't suffer 24 hours a day? As much as I hate these things, I have learned to count my blessings after I read your stories. I pray for all of you- Jabeen :'( |
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Title: Re: Okay, I am going to take on a very controversi Post by catlind on Sep 4th, 2002, 8:31pm Linda, one of the best weapons I have when the O2 doesn't work and those no pain pills around that I wouldn't have to take a whole bottle of to get even a little relief is ICE. Ice packs to the head, the back of the neck, sitting in a frigid air conditioned room sucking O2, cold showers, hot black coffee, ummm some other things in there too but can't remember them off hand. Forgetfulnot, when they did my imitrex my heart reaction went nutty. 3 weeks later I had what they think may have been a heart attack, but because I waited 7 days before going to the doctor they don't know (the blood tests were useless because it wasn't within 48 hours) Between that and heart palpitations and very low b/p, most of what's out there I can't take, or have taken and had MAJOR probs. I think all of us would do anything at all, even if it meant (I think Slammy said it) snorting yak dung if it would get rid of the pain. My hope is in research and finding the cause, the reason and then finding a way to fix the problematic area. Cat |
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Title: Re: Okay, I am going to take on a very controversi Post by forgetfulnot on Sep 4th, 2002, 11:42pm Dear cat Quote:
Last I read all traces of Imitrex should be removed from the bloodstream within 2 hours or so. So if it was three weeks later, maybe you had a heart attack, but is unlikely it had anything to do with the Imitrex, and no I don't work for GlaxoWellcome or whatever their name is. Lee |
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Title: Re: Okay, I am going to take on a very controversi Post by Jim R on Sep 5th, 2002, 3:57am Well....seems I stirred something up. But I honestly didn't mean to. I only meant to address something that had been bothering me for a while - the fact that I believe - for me anyway, that there IS a place for pain meds and/or narcotic pain meds, when other abortive methods have been exhausted. I don't care who or what doctor says that they have no place in the treatment of CH - that person would need to WALK IN MY SHOES to know that SOMETIMES, these drugs help me deal with the pain. And man, sometimes I NEED help dealing with the pain or I would do something very stupid...I am definitely not advocating them and state emphatically that all other methods should be tried first because of the inherent dangers of addiction, but pain is pain and if relief can ONLY be found by one of these drugs, NO one else is in the position to judge. ...."there but for the grace of God go I" - Jim R |
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Title: Re: Okay, I am going to take on a very controversi Post by BobG on Sep 5th, 2002, 4:07am Pain meds and addiction have been discussed many times before. I remember one string that stated a theory that there is only a low chance of becoming addicted if the pain medication is taken for pain. Usually the person taking the pain meds will stop when the pain is relieved. It's much more likely that the folks that take pain pills recreationally will become addicted. I've searched for the string but can't find it. Maybe someone else can remember it. |
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Title: Re: Okay, I am going to take on a very controversi Post by NancyMcFree on Sep 5th, 2002, 5:09am on 09/04/02 at 19:58:50, Jabeen wrote:
So does anyone elses eye never cease to ache .... mine has been aching going on 30 days non-stop. |
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Title: Re: Okay, I am going to take on a very controversi Post by catlind on Sep 5th, 2002, 6:22am on 09/04/02 at 23:42:37, forgetfulnot wrote:
LOL you don't have to defend yourself silly! I wish you did work for them, then we'd have an insider in the pharmaceuticals! They don't know what caused the ekg to show a classic heart attack. They know that in the ER the imitrex wasn't agreeing well with me, that hot tingly feeling lasted 2 hours. I don't know if it was the imitrex triggering my already fast heart rate, or what, I seem to be a medical anomaly in many ways, I just know I don't want to take that chance again, well maybe I would, in fact I wanted the frova because it wasn't supposed to affect the coronary arteries, however all the docs absolutely refuse. Something will come along that I can take, I just know it! hehe Cat |
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Title: Re: Okay, I am going to take on a very controversi Post by catlind on Sep 5th, 2002, 6:33am Jim I don't think you've started anything. You bring up a valid discussion. As for addiction, well from experience I know it's all too easy to get addicted to things like tylox even though you take them for pain. When I have them, before I will take them, I have to sit down and ask myself "Am I taking this because my head REALLY hurts, or am I taking this because my head hurts a little bit and I like the feeling". That's a personal thing for me, I know that I have an addictive personality, so I treat the narcotics with respect and care to avoid a circle of analgesic overuse headaches. I never take more than I'm told and I always make sure I'm taking them for the right reason. Cat |
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Title: Re: Okay, I am going to take on a very controversi Post by Jim R on Sep 5th, 2002, 7:02am Cat - got ya about examining the reason we are taking pain pills....one has to be very careful it IS for the pain...and, as we've discussed ad infinitum, only after all other abortives have failed... Sometimes when I don't have any luck with O2 and I do take a pain med, I can still feel the CH, which is still probably an 7,8,9 - but I don't care about it - or at least a hell of a lot less than I did - I can function, talk, laugh, walk around, sometimes even go out of the house. This isn't always the case. The other night had a KIP 8, O2 wasn't cutting it, and it went on and on and took two Percocets and it didn't lower it beyond a 6, so I was still sucking on O2 - hoping (and I'm like you - when it gets up around a 6, O2 doesn't do a helluva lot of anything for me) -it finally left of its own accord about an hour and a half later. When they've given me morphine in teh ER it made my CH worse. Stadol doesn't seem to work at all consistently, so I never no when to trust it. And all of them work best if taken early in the headache and then I'm faced with the same problem as you - if I take it early how do I know it would get bad? If I don't take it and it gets bad, maybe the meds won't work and I'll end up in the ER with 5 times the dose of narcs I could have taken to begin with...really, really tricky. I wish I could just find a DAMN preventative that worked this cycle and a f*cking reliable non-narcotic abortive, but don't think there are any left I haven't already tried or aren't triptans. My docs seem to think if I bump up again on verapamil (to 720 mgs.) I'll go into congestive heart failure or bradycardia or pass out, but the catapres (so far at least) seems to only be working on my blood pressure - at least next time maybe I'll be able to try the Amerge. Got toxic on lithium this year, can't tolerate Topamax...CRAP! (wish I coudl LOL!!!) - Jim R |
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Title: Re: Okay, I am going to take on a very controversi Post by kim on Sep 5th, 2002, 7:05am Bob G: I remember a thread under the meds section Drug Addiction. A writer paid us a visit and brought up the subject. I'm sure there are other threads as well, but that is one that I remember about this topic. Years ago - WHEN IN A CYCLE - I was emotionally attached to the pain pills because NOTHING worked. Looking back, I realize how little even I understood about what was happening to me, much less the docs. The pain pills were my security blanket. After cycle ended i pitched the pills and never looked back, but I can't say that will happen for EVERYONE. That's the thing with CH. So many variables from so many different aspects. Nothing sits neatly on the tip of the pin. All I can tell you is that eventually I became fed up with taking pain pills, and I also realized that they were INEFFECTIVE. I moved on to another "phase" in chasing the monster. That is another story for another thread :D Here is a question: How many of us who have had ch for LONG TIME have "been there, done that" and then MOVED ON in connection with clusters? |
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Title: Re: Okay, I am going to take on a very controversi Post by Jim R on Sep 5th, 2002, 7:09am Bob G: I remember that thread - maybe it was on the old board? I have read that elsewhere as well. My dad had kidney cancer for four years and eventually died from it and was on heavy does of dilaudid. He got himself off from it a year before he died (while his cancer was spreading and the pain was increasing) simply because he did not want to be on narcotics - the doctors could not believe it! So, maybe there really is something to it. PFDAN's. - Jim R |
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Title: Re: Okay, I am going to take on a very controversi Post by BobG on Sep 5th, 2002, 7:18am catlind, "I never take more than I'm told and I always make sure I'm taking them for the right reason." Your attitude toward the use of pain meds fits with the theory I stated 4 posts above. (Sure wish I could find it) You're using the pain meds for pain and not for recreation. Yes, it is very possible to get hooked on the pain med when using it for pain control but it is more likely if used for the "high". IMHO, most clusterheads seem to have an addictive personality. We smoke more than average and alcohol is a common subject here. And it's not all "sin" addictions. How many members of this board "have to" at least check in here every day? Or "have to have" a Milky Way every day. Yep, we're addicts. Addicted to relieving the pain and not looking for a high. Jim, ditto what catlind said about this discussion. |
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Title: Re: Okay, I am going to take on a very controversi Post by Elaine on Sep 5th, 2002, 7:35am I am with Bob on this one. The only time that I was unable to handle working and living any type of life was when I was on pain meds. For about a year. I was on pain meds. I was like a sombie. I when I wasn't having a cluster I was holding on to walls to walk. When I had clusters I was throwing up from the meds and I could not fight the pain because I was so weak and that made thinks worst. It took the pain down some. I had to make a choise. I chose to hurt a hour to three a day and not take pain meds. At least in between clusters I was able to function where I wasn't when on Pain meds. I guess you have to do what you have to do but I could not handle the pain meds. What good is taking the edge off if your still going to hurt. For people who want a drug that has very little to no side effects try Amerage. For people who take pain meds. Try what worked for me for a year. I took a nerver pill low dose Morning and night. I took over the counter excerdian three for a shadow. I forgot in my last post at night I also took sinus tabs. I treated my systoms instead of my headache even used ear meds. I think the nerver pill was like taking draimaine for me. Thats my 2 cents |
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Title: Re: Okay, I am going to take on a very controversi Post by catlind on Sep 5th, 2002, 12:58pm Elaine, I went through a similar thing. For the first year no one knew what was going on, and doctor after doctor etc. (we all know the routine) kept changing the diagnosis, but my primary (she's a great doc) worked with me to help me as much as she could, and she could see the pain I was in, so she let me continue with the Tylox. At one point I broke down and sobbed to my hubby I can't live this way. I was either in pain, or stoned with a baby at home. That was when they changed dx again, and thought I had temporal arteritis because of the tender temple, hair hurting thing and drooping eye, and I was put on prednisone. It worked, but for the wrong dx, and after 8 weeks of high dose, it too got to me (that is a NASTY medication). That's why I am so careful over the pain meds....It's too easy to fall into feel good side instead of the relieve pain side. Bob, I was trying to expand on your point not disagree with it :) Cat |
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Title: Re: Okay, I am going to take on a very controversi Post by ultio on Sep 5th, 2002, 1:14pm I dont care what any doctor or anyone else says. When someone hit that point, when its to much, when your head is BLEEDING from clawing at it and beating into the floor, When you can hear seductive whisper of Sam Colt promising instant and perminant relief do what ever works. If its morphine too bad but so be it. No one has the right to force someone to suffer and no one can tell when you are at that point but you. Yes its VERY dangerous. Yes it is a curse. Yes the things that help can also hurt. Educate yourself about the drugs and the warning signs. Talk to your doctor about them and if nothing else works use narcotics if they relive the pain. Understand Its not something Im trying to get people to do but NO ONE should tell someone its not an option if it works and nothing else does unless you are prepared to burry that person and provide for their family in their stead. |
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Title: Re: Okay, I am going to take on a very controversi Post by BobG on Sep 5th, 2002, 1:25pm catlind, I understand. I'm not that great at stringing words together so they always come out with what I meant to say. We're on the same side. :) Jim, the posts I was referring to was on the old board, probably about 2 years ago. |
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Title: Re: Okay, I am going to take on a very controversi Post by gtar_man on Sep 5th, 2002, 3:54pm We all have to do what we have to do to get through the day. For those of us who have to hold down jobs, taking narcs is pretty much out of the question. A friend gave me half an Oxycontin after seeing me in CH pain; gave me quite a pleasant evening on the couch - but wouldn't be possible at work. Also, I don't want to be a clusterhead AND a junkie. And at the risk of repeating myself: do we really know that ANY of the meds we're prescribed have any effect on CH? Attacks last 3 minutes; they last 4 hours. So you suck some oxygen and it goes away - because of the oxy or just because? You get on verapamil and it gets better - because of the verap or just because? Ch defies description and it defies treatment. That's why it's the Beast. |
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Title: Re: Okay, I am going to take on a very controversi Post by mikeslieber on Sep 6th, 2002, 5:47am After 7 years with a great neurologist he saw time and time again how well my CH responded to narcotics. He kept very detailed records of each visit and I kept an accurate daily journal. He referred me to a Pain Clinic. We first considered surgery and during an attack he tried numbing some nerves with no response so we decided against surgery. He explained some of his ideas on opite treatments and explained that some patients responded to daily use of methadone not so much to mask the pain, rather he suggested that on some CH sufferers the opiates restore normal neurotransmitter function. He told me to try it for 6 months and follow exactly his treatment. After 6 months I went from 4-6 3 hour attacks each day to about 2 each day and with an actiq sucker I could get relief within 20 minutes from an kip 10 down to a 5. I started to work again which I was totaly unable to before. With some others meds I now get less the 6 attacks each week and can often work 40 hours. My biggest issue is that after some research I fully believe that pure opiate meds pose very minimum health risks. With my other meds they were always checking liver functions and so on. Opiates pose no risks as to the organs or desease or shorten life whatsoever. Most other meds reak havoc with your body and health. I have noticed very little in the way of withdrawal even when stopping for days at a time. My Dr. suggests that because the opiates restore normal neuraltransmittor function my response is a little different as far as addiction goes. Now that I have the perfect dose I never crave the meds and often I miss doses. A lot of times what people see as "Drug craving" is simply "Craving the relief of such terrible pain when the body has a sample of what is working and the dose is too low. Thanks MikeL |
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Title: Re: Okay, I am going to take on a very controversi Post by catlind on Sep 6th, 2002, 6:15am on 09/06/02 at 05:47:34, mikeslieber wrote:
Mike I'd have to disagree with you somewhat on that statement. Every medication you take has to processed by your liver...and whether it's tylenol OTC or narcotics, your organs are still affected. But you are right about the other drugs and what they can do to you...I know prednisone will kill my cycle, I also know it stands a good chance of killing me...I know clusters won't kill me....No prednisone for me, I'll stick with my O2 and Ice and my preventative, and if I need them narcotics. Cat |
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Title: Re: Okay, I am going to take on a very controversi Post by Jim R on Sep 6th, 2002, 6:43am Cat, I may be wrong here, but I don't believe EVERY drug is processed by the liver. Some drugs vritually remain unchanged (or relatively so) in the body and are excreted solely by the kidneys - small point maybe - but those drugs do not have potential for damaging the liver (of course I don't know which drugs do this, although now, come the think of it, I think I'm on one - maybe the catapres...) - hey, you other medical people out there - help out my fading 47 year-old brain - am I talking out of my hat on this one??? On another note CAT, my neuro doesn't even want to discuss steroids with me. All he says is "you don't even want to go there" and I know they have some nasty side effects - so with him anyway, that whole realm is off limits to me... How are you doing Cat? I hope much better, sis... On a brighter note, I'm happy to report that I haven't been awakened by a CH for three nights now! ;D Whether it's the increased verap., the catapres or the combo, I don't know. I haven't had any narcs for 3 nights and the CH's that I do get seem to be less intense and USUALLY taken care of by O2 I still get the odd one that doesn't respond whatsoever to O2, but hey.... I'm still getting quite a few CH's during the days, but they seem to be shorter. Maybe something's starting to gel here - GOD, I hope so. Hope all you guys are having pain free nights and days and wishing you all the best! - Jim R |
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Title: Re: Okay, I am going to take on a very controversi Post by catlind on Sep 6th, 2002, 7:08am Jim, you are right, it's a small but important point. Kidneys and liver have to take care of a lot, and taking drugs of any kind for prolonged periods can have effects on your organs. There are very very few benign manufactured medications. The acetominophen in the tylox is more dangerous than the oxycodone if you take it wrong...i.e. tylenol will damage liver and kidneys REAL fast, oxycodone will just get you addicted LOL. Jim I'm doing better...my 12:30 a.m. CH has disappeared...or rather moved. I haven't been to bed before midnight for the last 4 days, so it's 2:30 a.m. and 4:30 a.m. I'm waking up, but they are little kippers and quick O2 fix works great. Daily headaches are still on the kippers scale although had one yesterday that hit 5. I'm keeping busy and keeping distracted and doing projects for OUCH and have started a smoking cessation program, one on one with a counsellor so I will hopefully quit PERMANENTLY this time, last 2 times I quit for 3 years, then went back, then quit for 2.5 years, and went back, so this quit is forever...I can't be that stupid 3 times in a row LOL It's hard with hubby gone, but I'm not the only one in the world alone with kids or with a spouse, child, brother, sister, father, mother, etc. at war. So I remind myself I'm not the only one, and pick myself up and move on. :) Thanks for asking about me Jim :) Cat |
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Title: Re: Okay, I am going to take on a very controversi Post by Jim R on Sep 6th, 2002, 2:49pm Cat, Really wasn't nit-picking but I know there are differences and different risks with each elimination method. Could agree with you more about acetominophen - 2 drinks and 2 of those have the potentia, (albeit rare)l to put one in fatal liver failure - add a couple more of each and one can see the picture. Never touch the stuff myself (the acetominophen, that is! LOL!) I am glad to hear your CH's are a little more manageable anyway and that you're trying to quit! Wish I could (but obviously not enough..It's really stupid - I know all the dieases, the pathophysiology of them, read the records of the patients with tobacco related conditions and yet I say I enjoy it too much - I guess THAT IS addiction...) Best of luck with this project. Jim R |
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Title: Re: Okay, I am going to take on a very controversi Post by Slammy on Sep 6th, 2002, 2:52pm on 09/06/02 at 07:08:55, catlind wrote:
umm.... *cough*.. (stifling grin)..... of course not! Never! Bahahahaha! (sorry, couldn't hold it in) ;D Slammy 8) |
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Title: Re: Okay, I am going to take on a very controversi Post by catlind on Sep 6th, 2002, 2:57pm Jim, I know all the health issues as well, my dad use to say anyone can quit smoking, it takes a brave man to face cancer. Little did he know he'd drop dead from Congestive Heart Failure complicated by Chronic Obstructive Pulmonary Disorder....guess some folks just don't want to quit. I've quit twice before, once for 3 years, once for 2.5 years....the stupidest things I've done in my life is start back up. That's why I'm in the one on one counselling...I plan to quit forever this time...once I quit, I plan to NEVER smoke again. Cat |
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Title: Re: Okay, I am going to take on a very controversi Post by catlind on Sep 6th, 2002, 2:58pm Slam, the monkey man...STFU LOL I would expect nothing less from you :) :-* Cat |
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Title: Re: Okay, I am going to take on a very controversi Post by mikeslieber on Sep 13th, 2002, 12:39am I read over and over of kip 10 cluster attacks. I read how we suffer perhaps the worst pain known to man. I read how clusters are worse then childbirth. I believe most of it. I suffer it. I have had kidney stones. They were far less painful then a cluster. If we suffer this bad what is the issue with narcotic use even daily use, even heavy use when overseen by a Dr. who knows how to use the meds. When I had no meds that helped I would be at the store on the floor pushing my head against anything I could, unable to hold at all still, or on the side of the freeway curled up in the fetal position, this could and did happen anytime and anyplace. Even if a person was physically dependant on narcotics (if they do in fact help) He/She would have a far more normal lifestyle suffer far less and not look like a complete freak doing the cluster dance in the middle of a serious meeting. The issue of addiction seems very small if one suffers several 1-3 hour attacks each day for years at a time. I just don't understand the big problem if they really help some people. I was a big enemy of narcotic use for a long time. Yet now every thing written obout the danger and of opiate use seems to lack any substance and be full of emotional reasons rather then any kind of pure fact. MikeL |
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Title: Re: Okay, I am going to take on a very controversi Post by Jim R on Sep 13th, 2002, 5:27am Mike, I think the dangers of narcotics use/abuse/addiction are very real and need to be taken very seriously - even by people who deal with incredible pain. I am one of the ones here for which narcotic pain relievers do help. When I've got a KIP 9-10, I would take anything to stop the pain - as Slammy said - even snorting yak dung if it would help. Fortunately, I do not get these level headaches every day, but if I did, I would probably be facing a real addiction issue IF the doctors could not find a preventative or an alternative, non-narcotic abortive. For example, yesterday, I had a KIP 9-10, and God, I had it while driving home from a friends (quite some distance). I had it before I left, used half a tank of my O2 without success. It ws the longest ride of my life. I ended-up having this headache for for about 6 hours and took Percocet and phenergan, which did relieve the pain. If I had to face this every day, I just don't know....my neuro and I are experimenting with different preventatives and abortives, adjusting dosages, and we haven't perfected the right combo yet. For safety reasons, it is always preferable to use a preventative, move to a non-narcotic abortive and finally, as a last resort, narcotic pain relievers if they help - many on the MB claim they do not help them, and for them using narcotics is a waste of time and money and places them at unnecessary risk. Good luck Mike. Jim R |
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