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burnt-toast
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Re: The narcotics question revisited
« Reply #25 on: Mar 19th, 2006, 8:26pm » |
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The real kicker in all this is the fact that we're too small of a percentage of the population to drive research dollars into CH specific treatments.
Until something improves and some CH specific treatments are developed - I guess pain meds. will always be an issue.
I still remember the words my first Neuro. used. "You may never get a diagnosis - but if I can get rid of the pain that will work for you - right?" I answered yes.
I went chronic/undiagnosed for two years. Every time I tried a new doc. and explained my symptoms - that old, where did I leave those keys to the med. cabinet look would cross their face.
I didn't want more pain medication, I wanted relief from the recurring and unbearable headaches that never allowed me to sleep or rest.
I took boatloads of pain meds. for years before realizing I would never get better. Finally I started doing my own research. Also found a Neuro. at a headache clinic who was familiar with CH and willing to work with me.
With the Lithium, Verapamil, Melatonin and Prednisone combinations I take now - I'm far from perfect - but it's heaven compared to those first few years of battling this nightmare with pain meds.
I pray everyone finds some relief from this nightmare because only sufferer's and their close supporter's know how devistating this condition can be. My experience is that we won't find it in pain meds.
Tom
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Beastfodder
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Re: The narcotics question revisited
« Reply #26 on: Mar 22nd, 2006, 12:33pm » |
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Never found a narcotic to help shift the pain - but never looked too hard either.
Do remember getting paracetamol poisoning in the early days (sure sign you're overdoing things) and trying some far heavier painkillers that you'd only notice once the beast has gone leaving you too stoned and spaced to function properly.
Even as episodic on 2/3 hits per day over 10 weeks that's a lot of opportunities to abuse narcotics - simply ain't worth it.
Not saying I'd want to give birth without an epidural tho' !
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Bob P
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Re: The narcotics question revisited
« Reply #27 on: Mar 23rd, 2006, 9:39am » |
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I think that if it helps you deal with your attacks, go for it.
I've tried painkillers on 3 occasions, all with terrible results. Each time it has hidden or dulled the onset of the attack but it eventually hits K10 and the pian med is no good. By then it's too late for most of my other treatments to be effective. I've suffered a major K10 each time I've tried pain meds.
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gore2424
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Re: The narcotics question revisited
« Reply #28 on: Mar 23rd, 2006, 1:57pm » |
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Hello everyone Terry here thought about writting this for many days so first off let me make a statement that everyone is different on how they fight off the pain from the beast so ok here is what I would like to add to this post:
I have been chronic since Nov. 1999 spring and fall for 17 years before that I have a right side cluster 3-4 pain level 24/7 some days its worse I even had the right trigeminal nerve cut in May 2002 and didnt have h/a for almost 4 months then clusters back full force and even tho right side of face is numb forever I have that demon pounding chipping cutting away inside my skull . from 1995 thur 1999 I have tried 67 different meds in many combos some worked for awile then farted out on me O2 worked great for a few years then I got no relief at all but my neuro and I have gotten a good combo to keep beast at bay most of the time for the last 15 months I wear a fentanyl 75MCG/HR pain patch I change every 72 hours plus take 60mg Remaron at nite to help sleep plus take 60mg citalopam hydromide anti-depression med in AM and take 0.5 clonazepam when I get panick attacks and for the last 4 months now I am allowed 12 per month 10mg morphine shots which I can take 3 in a 24 hour time frame if need which I have used only 2 in a 24 hour period twice but what I am using now keeps the demon in check. thats the way my life is and I have come to terms with it and I can even drive after 1 hour of getting a shot with no problems. plus I was granted SSD in 2003 after getting layed off due to a staff reduction (yeah right after 20 years of selling auto parts and equipment) Now I want to say again to all that everyone is different with clusters and I have found out that pain meds do work for me with these fö¦«ôµg clusters well I have rambled on too much again pfdan's to all Terry (still in Davcon Iowa )
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mynm156
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Re: The narcotics question revisited
« Reply #29 on: Mar 24th, 2006, 3:17am » |
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Hey Gore 2424,
Thats alot of pain meds. I am chronic and do get some relief from pain meds but nothing near what they have you on. Have you tried Stadol? It is the same dosage as your MS. I dont know what the MS is costing you but you might give it a try.
I am glad something is helping.
GOODVIBES
MYNM156
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gore2424
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Re: The narcotics question revisited
« Reply #30 on: Mar 24th, 2006, 9:42pm » |
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Yes I did try stadol and I used it too much I was working at the time and I was abusing it I loved the high it gave me and first time I used a bottle in a week then next bottle I would fill it half water so I could use it more and longer I lied 3 times to get more than I really needed so I requested that I be taken off it and will not get on that joy ride again. I can function with no problem on current meds just to be safe I wont drive car til after 1 hour of getting a shot. And in summer time I just have to stay out of the direct sunlight cause it will put too much med into system too quick . I was on the 100MGC/HR pain patch for 2 months but I couldnt function at all was too doped up to even get out of bed to feed myself so we went down a dose and it works good enough for me to have a life. I am a VA vet so all meds but the shots cost me only $8.00 a month and I only pay $12.44 for the 12 shots. And I can have instead of the shots 14 per month of the morphine pills instead that are 30mg immediate release but they take too long and are stronger med the shots in about 5-10 minutes I can feel the 7-9 pain level go down to my base pain level of 3-4 and sometimes 1-2. hope I answered your ? pf vibes to all Terry
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StressFree
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Re: The narcotics question revisited
« Reply #31 on: Mar 25th, 2006, 12:08pm » |
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Hi Terry,
What you describe is basically 'pain management'. It is a legitimate treatment for many extreme chronic pain conditions. I'm very glad it works for you without too many side effects. It also sounds like you are aware of and careful about the addiction/dependence issues. Unfortunately most people on this site and most physicians don't recognize such treatment as you are receiving. For many the cluster attacks break through regardless of pain management efforts. We are all different though, and I think pain management does work for quite a few folks. Many won't bother to post about it due to the controversy and of course attacks from others on the board. Best of luck to you. Hoping and praying we can all have a cure in the near future, Rich
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Radha
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Re: The narcotics question revisited
« Reply #32 on: Mar 31st, 2006, 12:16am » |
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before i ask my question, i want to say i am not an addict, but just in severe pain, i also have lyme and other health problems, and doc wont give me anything other than vicodin, i mean no other drugs with the vicodin and i like to rotate and take different stuff, and i wanted to know if any of you know of any websites that sell drugs like MS Contin or oxycodone, without a prescription, i say again, i dont like to take any pain meds at all, and am not an addict! just want some relief!! so if any of you know how to get these kind of meds with rx, please be open and let me know, imitrex works, but not all the time,
radha
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LeLimey
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Re: The narcotics question revisited
« Reply #33 on: Mar 31st, 2006, 6:59am » |
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radha you say imitrex works but not all the time? Is that possibly because sometimes you leave it too late before taking it? I know I've done that myself with various meds in the past hoping I won't need to use them, afraid of needing them more later in the day and having used up all my bullets..
Have you ever tried O2 at a high flow rate through a non rebreather mask? It works in the same way as imitrex, basically it constricts the blood vessels in your brain thus reducing the pain. I find it fantastic and very fast working. If you haven't tried it, or haven't tried it in the way I've mentioned I'd highly recommend giving it a whirl if, for no other reason than it's alot less toxic on your poor old body than tons' of other muck bunged down it daily.
Wishing you some pain free time,
Helen
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Radha
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Re: The narcotics question revisited
« Reply #34 on: Mar 31st, 2006, 11:26pm » |
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yes i do think i wait too long to use the imitrex, since i hate using it, and i am scared i am using it too often, how often is too often?? and i do use the O2, but i dont think i am using at high enough liters. but still if anyone knows of any website, please let me know, i cannot travel to any doc, am too weak and bedridden, cannot leave home at all, so i am stuck with GP i have, and he isnt that cooperative about prescribing stuff, scared i will get addicted, but he doesnt know how careful i am, and how infrequently i take meds, still docs dont trust our word!!
radha
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zuesthedog
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Re: The narcotics question revisited
« Reply #35 on: Apr 3rd, 2006, 8:05am » |
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I,ve sat and read all of the replys to this thread, and found the different view points jus asstounding.Been chronic several years,and down right sucidal. After pleading with Dr. for anything, was givin demerol IM for abortive use. The real problem came with the amounts of attacks [3-4 a day] . That would =300-400 mg a day of demerol. Yes tolarance did increase a demerol levels went even higher. Then they even added oxycontin to the mix. Addiction deffinitly took over. Finally once I got the trigen. nerve stim. and the pain was gone started the long battle to right myself. the road isnt easy but going pretty well. The bottom line the drugs arent good but the pain is much worse you have to do what you have to do to keep from killing yourself. If anyone is truly that desparate stimulating the nerve is the key for me . PF 2.5 months and smilling on. pF days to all.
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zues
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mynm156
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Re: The narcotics question revisited
« Reply #36 on: Apr 4th, 2006, 12:16am » |
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on Mar 17th, 2006, 8:52pm, Linda_Howell wrote:
Hardly anyone here would ever say Narcotics helped them deal with CH. The one's that do...are in denial, recovering addicts who use CH as a reason, since we all know the pain is excruciating.
Linda |
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WTF? Done or not BAD FORM!
Let me see if I have got this straight. I as a chronic who have been prescribed narcotics to help deal with the beast am nothing more than an in denial addict?! Sorry Linda but would you not agree that most of us are on a different treatment regiments and what works for you might not work for me? What bothers me is that anybody who tried shrooms, LSD or some other illegal substance doesnt get a second glance but if you are one who uses opiates you are an addict who's facking it? It maybe true of some Linda but not all. I for one dont get OFF on the drugs. I have tried everything under the sun sometimes some work sometimes some dont but it has been shown that SOME clusterheads do get some relief from opiate meds. Its listed on the OUCH site. Just because you or some others may not have had any success doesnt mean that others can not.
I say here's to gore2424 for being able to see what was going on with the Stadol. I have no insurance and it is too expensive to get addicted too. Shit COCAINE whould be cheaper!!
PF DAYS AHEAD FOR US ALL!!!
GOOD VIBES ALL
MYNM156
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miapet
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Re: The narcotics question revisited
« Reply #37 on: Apr 4th, 2006, 12:56pm » |
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just my 2-cents here . . .people's choice on chancing addiction is exactly that, their choice . . .I'm not touching that part of the issue . .. .
but, what about rebound h/as? most of that stuff always whacked D with rebounds . . .(which might be where someone read about ech becoming cch?)
anyway, whatever your choice of battle is . .. we hope it works for you!
*positive light and energy*
miapet
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kcopelin
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Re: The narcotics question revisited
« Reply #38 on: Apr 5th, 2006, 12:19am » |
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See, this really is a double-edged sword....many Drs are more than willing-in fact prefer to, Rx pain meds-which should not be the first line of defense. In my case it was about the 567th line of defense. Listen, whatever gets you through the night, and the days, and keeps you from desperation-as long as you are aware of the possible consequences-I say go for it.
PFDAN to y'all
kathy
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pfunk
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Re: The narcotics question revisited
« Reply #39 on: Apr 5th, 2006, 12:48am » |
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Over the last three or so decades I have tried just about every narcotic that any doctor gave. Demorol in high doses doped me up pretty good but just masked the pain until it wore off and the beast roared and kicked my ass. Morphine seemed to work quite well. It was the only on that left me feeling completely symptom free but I didn't want to be doped up all time. After all, I am finishing my degree to become a teacher. You wouldn't want me teaching your kids while I was all drugged up would you? That's one reason I've sworn off painkillers. he other is that if they are not direst triggers for me, they pretty much cause me to get REBOUNDS. Pain killers may help some and if they do more power to you. Much luv and good luck
Pfunk
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burnt-toast
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Re: The narcotics question revisited
« Reply #40 on: Apr 5th, 2006, 10:37am » |
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I have to ask a basic question here, one that my first good Neuro. asked me.
Pain management of what? This isn't a knee or back injury that delivers constant pain that needs to be managed or has a limited time frame in which narcotics will be used.
This is an on-again/off-again or possibly always-on pain syndrone that - comes and goes - lasts minutes or hours - hits once or multiple times daily/nightly - ramps up to full intensity and/or stops before getting there, etc., etc., etc., seemingly of it's own will.
Chronic or Eposidic the pain/attributes of this nightmare are impossible to manage with narcotics - without serious risk of addiction. I'm not calling anyone an addict but honestly - what are you managing with narcotics?
As previously stated, over 10 years ago I went the narcotics route for about two years before finding a Neuro. who focused on the underlying problem and helped me move away from treating symptoms.
Luckily, I'm now a former Chronic that's been pain free for just over two months - following years of Chronic CH.
More importantly over the last decade my Chronic condition was made more liveable (not perfect) by proper treatments.
I belive I got here by contineously attacking the problem and tracking the effectiveness of treatments and experimenting with new ones - not focusing on pain management. Many of these drugs are clearly not as user friendly as I would prefer but at least they attacked the underlying problem causing the pain.
I believe narcotics are a dangerous trap that may keep many from finding true relief. But as some here have said - it's your choice to make.
Tom
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| « Last Edit: Apr 5th, 2006, 10:37am by burnt-toast » |
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Garys_Girl
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Re: The narcotics question revisited
« Reply #41 on: Apr 5th, 2006, 2:23pm » |
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With the pain CH sufferers experience, my first response is to think I can't believe you're not all addicts. !! Hubby has had back problems and knee problems for years (airborne infantry with 385 jumps - one knee has no cartiledge left in it). He's been through pain management routines and has, as each docter we have seen says, one of the highest thresholds for pain in anyone they've ever seen.
With various narcs prescribed at various times for these other problems, he's tried using them when the beast attacks. They've helped bring the peak down to maybe a Kip 7 or 8, but the beast always reappears with a vengeance, and within just 2 or 3 days he's had to significantly up the dosages for there to be any effect.
Because the side effects are so great, the possibility of addition is so great (and as a teen he had addiction problems), and the efficacy drops so rapidly, he stopped bothering with narcs for CH.
Some people don't have addiction problems. I know plenty of people who smoke 2 or 3 cigarettes with a drink on a Saturday night and that's it. Me? I'm either a pack a day or none at all.
So if the narcs work for you - great. But they are very hard on your body, addiction and functionality impairment considerations aside. Morphine blocks the production of endorphins, and depending upon your length of use, it can take up to six months before your body will naturally produce them again. And all of them destroy your liver rather rapidly. They didn't work well enough for Gary to bother continuing.
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mynm156
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Re: The narcotics question revisited
« Reply #42 on: Apr 5th, 2006, 9:27pm » |
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Your right this isnt something that can be managed BY ANYTHING! There is nothing that we take that does ANYTHING but either knock it down a peg or just try to contain it a little. I have found that when I am at my worst and I am going DAYS without relief from shadow or Cluster that the narcotic THEN help provide me with a little respit. I have found and it has been posted here though that when we are dealing with another pain and I have been on say Vicodine for Kidney Stones (BY THE WAY I'D LIKE TO TAKE THIS OPPORTUNITY TO THANK THE PEOPLE WHO MAKE ZONAGRAN FOR THESE LITTLE GEMS) That the beast seems to stay away more not sure why that is but several people have reported the same thing. Not that I am saying that 5mg of hydrocodone is really doing anything but something is. Narcotics make me cranky and constipated I dont get how ANYBODY could get hooked on that. Oh well. GOOD VIBES
MYNM156
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