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Topic: Doe anyone else use narcotics? (Read 1161 times) |
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sonyjack
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Doe anyone else use narcotics?
« on: Oct 14th, 2002, 2:57am » |
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I have not seen any postings on the use of narcotics.
I have been getting these things for over 25 years. After fianlly being diagnosed (you know the drill - TMJ. Root Canals, and shrinks) I was first given Prednisone. What a wonder drug! for the next two Clusters. Then Lithium, Sansert, etc. Oxygen, too for a while. But they all lost thier ability to stop the cycles. My local Emergency Rooms used Oxygen, sometimes Imitrex, and finally Morphine IV until I stopped screaming. I ahte, hate, hate going to the hospitals. Even the ones that have a protocol for CA's. It is so humiliating (being ruleing-out "drug-seeking behavior". fianlly two years ago, I told my Doc (a really great Family practitioner) I did not want to live anymore. My life was down the toilet, I couldn't do my work (self-employed computer consultant) and I really just wanted to die. He wouln't let me. HE promised he could help. After being set-up with a Pain Clinic, I was given Atenenol, and daily doses of Oxycontin. The Atenenol took a while to work (and put 50 pound on me), but the Oxycontin at least kept me out of the ER. When I was still getting some REAL BAD HA's, and told hiem his therapies were not working, and asked if I could change my contract with hime, and go to a Hospital when teh pain became nbearable again he said three things.
1) NO - I was NEVER to go back to a hospital for pain
1) "you People" (CH victims) were very hard to treat
3) "you people" tend to exxagerat our pain.
When I asked hime what I was to do when a Killer headache came on, he said "wait it out".
That's when I fired him -- Back to my G.P. - He switched the Atenenol to Verapamil, Got me on Caffergot, kept up the Oxycontin, and gabe me Dilaudid suppositories for when it got unbearable.
don't get me wrong. The Narcotics don't take away the pain. But they take me awy from it.The pain is still there, but I am one step removed. I can survive that, and not have to go to the hospital (or my other choice - never far from my thoughts - the morgue.) I had a Heart Attack when I was 30, and with my disease, the Imitrex (both Nasal and Injectable) are very hard on me. Very hard. Angina and heart attacks are not as painful as CH, but they have their own downsides. And If I do want to live, It really isn't smart for me to tke it more than a couple of times a week. And I am jup to 4 - 6 HA per day.
AS long as I don't gety high, and am able to work, I don't mind the Narcotics, but I have seen very little on this site about them. I would never recommend my life to anywone, but I would like some feedback. After seeing some of the intense negative responses to some of the posts on tis board, I have been very reluctant to say these things. But Ireally would like to hear from people with any experience along these lines,
P.S. -- I have always been able to stop using them as soon as the Cluster ends. A few bad days of withdrawal, but no worse than a bad case of the flu. After that, I am narcotic free until the next one comes.
My Doc also has me on Wellbutrin daily for the deep depression I get, and Xanax as needed when I start staying up all night afraid to sleep, for I know waht is there waiting to wake me up.. my fear is almost as bad as the pain.
I really thank God for this site. Just knowing you allare out there somehow helps me cope.
Bless the lot of you
Sonny
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suzy617
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Re: Doe anyone else use narcotics?
« Reply #1 on: Oct 14th, 2002, 3:21am » |
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So sorry to hear of all your pain. I also used to run to the ER years ago before I was diagnosed and they would constantly accuse me of doing cocaine, give me a pain killer and send me on my way back home. None of their medication ever helped me so I just stopped going. I am glad in a way because it frightens me to even think about having to go thru withdrawals. I have just started trying the different medications they have for CH so I cannot be of much help to you, so far I am not having much luck myself but there are alot of people here who could give some good advice, I'm sure. I wish you luck and pfdans.
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Mark C
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Re: Doe anyone else use narcotics?
« Reply #2 on: Oct 14th, 2002, 3:34am » |
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Thank you Sonny for your post,
I too have suffered with the "you people" syndrome at my local hospitials. The last time it was a Compazine IV and parked in the hall for 4 hours till it passes.
Sonny I will tell you, for me, in my younger days I did a lot of drugs, legal and otherwise to ease my pain and I have never had much luck with narcotics. As you said I can remove myself, but not the pain. It wasnt until the Imitrex type drugs that I achieved any relief to speak of, but with your cardiac complications I can see where it would be a real problem. Yours is a tough case. I wish I had an easy answer to give you. I know I am trying to research and prepare my "defense" plans for my next Doctors visits and this site and OUCH have become an amazing resource. I cannot believe I have not found it sooner.
Please keep fighting the good fight and let us know how you are you are doing.
Thanks,
Mark
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Bob P
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Re: Doe anyone else use narcotics?
« Reply #3 on: Oct 14th, 2002, 7:52am » |
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Doc Goadsby, one of the leading experts on CH says this:
"Opiates, non-steroidal anti-inflammatory drugs and combination analgesics have no role in the acute management of CH."
This is why you don't see much about it on the site. BUT, when CH pain hits, do whatever works!
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SteveY
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Re: Doe anyone else use narcotics?
« Reply #4 on: Oct 14th, 2002, 11:32am » |
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Jack,
A lot of the 'flaming' here is very much tongue in cheek.
No one here would decry the post of a sufferer in pain.
It sounds like your going through hell at the moment. I've been there, I'm chronic, but verapamil(the instant release variety) gave me a life back.
We're all diffrent, so the amount of verapamil needed to supress your attacks may be as high as 960 mg.
You may need verapamil and other CH drugs, but opiates are not the answer, as you say they don't take the pain away from you, they take you away from the pain.
Here is a link, used many times. Read it and find a good neurologist.
http://www.hospital-doctor.co.uk/hd_news/hd_news_article.asp?ID=2498& ;;Section=
PFDAN,
Steve
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SFChris
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Re: Doe anyone else use narcotics?
« Reply #5 on: Oct 14th, 2002, 12:17pm » |
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Sonyjack,
Thanks for the private e-mail. I'll call you later today.
As a fellow San Franciscan, you need to know about the clinical research trial that is presently underway. Dr. Jerome Goldstein (in SF) is one of the doctor's participating in the trial. I am a participant in the study, and they really need more people to participate. Many of us who have been accepted are no longer in cycle, so they really are needing "active sufferers". Dr. Goldstein is a renowned neurologist, and not only won't they charge your insurance company, but they will pay you to participate. Check the link below, and follow the info to the San Francisco study. Good luck.
Chris
http://www.clusterheadaches.com/clinicaltrial.html
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J. Marshall
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Re: Doe anyone else use narcotics?
« Reply #6 on: Oct 15th, 2002, 9:17am » |
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Hey Sony,
I'm in the same "boat" as yourself. Not able to use Imitrex, O2 doesn't help. I use a Narcotic for CH along with another pain problem I have.
The use of a narcotic for any type of pain is a hard decision that you and your doctor need to weigh all of the benefits along with the draw-backs. If taken responsibly, narcotics are a good choice as long as all other treatments, normally used for CH, have failed or the side effects are too bothersome to continue. And it seems this is your case.
If you're using it solely for CH, a long-acting version is definitely better. Since, once you get the Cluster, it's usually too late to take a pill. But again, that's a choice you and your doctor have to come to.
Good Luck, and let us know how your doin'...
Jim Marshall
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rmbreset
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Re: Doe anyone else use narcotics?
« Reply #7 on: Oct 22nd, 2002, 9:00am » |
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Yes, I have used stadol ns, when i am in a full blown cycle i get more headaches than I have imitrex for, it does not abort like imitrex, but at least brings it to a bearable level. I have not tried oxy and with all the bad press it gets I doubt I could get a script.
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Karla
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Re: Doe anyone else use narcotics?
« Reply #8 on: Oct 23rd, 2002, 8:46am » |
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Use the search botton on the word "narcotic(s)" and you should find several posts in the archives on people's use of narcotics. Hope this helps you.
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Karla
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Jim R
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Re: Doe anyone else use narcotics?
« Reply #9 on: Oct 23rd, 2002, 2:43pm » |
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Sonny, there was a long and relatively recent thread on narcotics use. I remember it well because I, unlike many people on the MB, find narcotics very helpful when all else fails...that is, my verapamil, my catapres, my O2...then I either take percocet, stadol or end up in the ER, wehre they inject me with demerol or morphine. Yes, it doesn't usually get rid of the pain, but as you say "it takes me away from it" and distance from the pain is all I am interested in when I have a full-blown 10. Of course, I would like my non-narcotic prophylactic drugs to work 100% of the time, but reality is they don't and when they don't, I thank God for narcotics! My neuro talked to me about entering a pain program, wherein I would be put on a duragesic patch or some such other chronic narcotic, recognizing that I would be addicted at the end of my cycle and would have to handle that, but I am not ready to do that and in fact, of late (and knocking on some wood) have had pretty good success with the verapamil/catapres combo. Good luck to you. - Jim R
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wiseguy
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Re: Doe anyone else use narcotics?
« Reply #10 on: Oct 24th, 2002, 11:18am » |
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sonyjack,
I am new to this site but, at the age of 49 have been at the effect of CH's since I was 15 years old. Over the years, I have been treated with every classification of medications and combinations you can name. I've been to leading headache clinics and the Mayo Clinic as well.
About 10 years ago, I relocated from Los Angeles to the Upper Midwest. Professionally, I am a 30-year veteran of the media industry.
Of course arriving here meant an automatic change of physicians. While we got off to a bit of a rocky start, my doctor tried newer medications and new combinations including injectible and tablet Imitrex. Today, I take Diovan and Serzone (both maximum dossages) but there has been nothing that ever stopped or minimized my recurring headaches which btw are chronic. Finally, about five years ago, the doctor prescribed Stadol NS and a smaller prescription of Vicodin ES. I used the Stadol when I was home and 1/2 of a Vicodin at a time when I was at work or on the road. Both of these medications, taken only when my episodes were beginning did allow me to function. To the point that I have not seen the inside of an ER or missed single day of work since.
For the sake of preserving his ability to retain his license to prescribe controlled substances, before he would provide these medications to me, he sent me to see a prominent neurologist at a major clinic. He received a second opinion from that neurologist and then prescribed.
Just the same, I feel completely stigmatized by the fact that I use these medications but, in almost 35 years of suffering, this is the first time I've had any degree of relief. In spite of the relief, my doctor refused to refill my last request and has scheduled me to see him next week. While I do not like taking these medications because I don't tolerate them real well. I'm am pretty scared that I am headed for a visit to the doctor as well as the past dark world I used to live in.
As far as addiction is concerned, I'm quite certain that, to a degree, I am however, my particular dossages for these meds have not increased at all over the past five years and one thing that is known about opiates or many other controlled substances is that, habitual users require more and more over time for the same effect. I continue to get the same relief today as I did at the beginning.
FYI. one other thing that I have recently discovered has helped me for some reason is heat. I can't explain why in medical terms since the only recommendations I've ever heard are for cold packs on the base of the neck or on the face but, if my episodes start in the evening, I jump into the shower and continue to increase the temperature until it's almost unbearably hot. I let the water run directly onto my head and neck and, after about 30-40 minutes, I get out and find that I feel there's at least a thin wall between me and the pain. If it's around bed time, I can then at least recline in my bed and I usually place a heating pad under my head. I think it's because the high heat stimulates the release of endorphins much as it would if you undertook a long run or a strenuous workout but withouth the increase in heart rate or BP. I think that's what they call a runner's high.
Back to the narcotics, you will find that most medical people do not believe they have any place in the treatment protocol for CH's or anything other than a short term condition. I'll take their word for it but it doesn't change the fact that they have worked for me. As we all know, no matter what the time of day, when you're up pacing and banging your head on the wall, the ONLY thing you want is relief. I fail to believe that a single sufferer hasn't at lease once considered the possibility of ending the pain by ending their life.
My late uncle was a colonel in the Strategic Air Command and served as a navigator on B-52's. He suffered from CH's his whole life but he never had a problem when he was on long missions to Vietnam because they breathed pure O2 all the way. It's no coincidence that he never missed a mission because, for him, the Air Force provided his particular relief.
I am militant in the belief that, in lieu of a cure, we all are entitled to relief. There isn't a doctor in the world who takes his or her Hipocratic Oath seriously that should disagree. Research has come a long way but, as the cover article in Time Magazine on headaches indicated a few weeks ago, the direct cause(s) for this condition remain elusive.
What we should all gain from our own respective experiences is that what works for one person does not necessarily work for another and the pain I feel is probably different than yours.
I hope what I've shared with you helps in some way. I come from a family of medical doctors and nurses. I'm the only one in my family of six that isn't medically trained. They have all watched me go through this hell my whole life and, as sympathetic as they are, not one of them could ever come close to knowing how it really feels.
The only other thing that approximates the pain of these headaches is the ever present dread of the one you haven't had yet....and the one after that.
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Jim R
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Re: Doe anyone else use narcotics?
« Reply #11 on: Oct 24th, 2002, 12:39pm » |
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Very well put, wiseguy. I am one of the minority of the MB that does find relief w/narcotics when all else fails. I have times when O2 doesn't do it, verapamil failed me once at a certain dose (now increased), lithium failed me this year after working fine last year and so on.... I still have occasional breathroughs with my current regimen of verapamil/catapres....
I think the important thing to remember is that narcotics should always be the LAST RESORT, used only after all other available choices have been exhausted, simply because of the very real addiction risks. But I would never condemn someone finding relief with a narcotic if all other modalities had failed - that would be purely cruel and inhumane.
PFDAN's to you.
Jim R
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Hound_Dogg
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Re: Doe anyone else use narcotics?
« Reply #12 on: Oct 25th, 2002, 12:54pm » |
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I also use a narcotic, but to a very small extent. Usually the Imitrex will work. But when I've used my share or it doesn't work, I use OxyIR. I also used to work with an addiction counseling center. Not to split hairs, but the term ADDICTION is used too often when it comes to Narcotics. When a person uses a narcotic for several weeks or longer, the body will get used to this. The endorphin production will slow down since the body will say ""Hey, I don't have to work to produce this anymore. I'm getting it for free." When a person tries to immediately stop using the drug, the body will complain with Flu-like symptoms. This is called "DEPENDENCY" not addiction. Now imagine going through a severe case of the flu knowing if you just took a pill, it would magically go away. That would happen if it was withdrawal, you just take some more of the opiate and the flu-like symptoms and insomnia will magically & immediately go away. Most people would see their doctor and say I don't feel well after stopping this drug, what should I do? The doctor would or should slowly reduce the amount of the drug, minimizing the discomfort. But some people might go to their doctor and lie and say "I'M still in pain, gimme more of that drug". Or maybe forge a prescription, or get it off the street. Now, that's where dependency ends and addiction starts. So there is a real distinction between Addiction and dependency.
All that said, I wouldn't use it as a First-Line defense against Cluster Headache, but if you've tried everything else it's better then nothing.
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Mark C
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:)Re: Doe anyone else use narcotics?
« Reply #13 on: Oct 26th, 2002, 3:19am » |
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I am with you Wiseguy,
Daddy retired from Maxwell AFB Chief Master Seargent, with Clusterheadaches AND I find great relief in the same hot shower technique that you do. I posted just such a thread here recently and to my surprise discovered we are in the minority, us heat lovers.
Go figure, must be some kind of military experiment. 
I wish I have had the success with other meds you guys have but to be honest the Triptans are the first thing that ever really worked for me, and I have tried EVERYTHING else, legal or otherwise. I guess I have a somewhat checkerd past, but we will keep that between us won't we
Mark
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erik
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Re: Doe anyone else use narcotics?
« Reply #14 on: Nov 13th, 2002, 8:26am » |
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I am chronic ch and have a minimal 3 attacks a day. got so run down this year that i got talked into seeing a pain management doc. who put me on fentanyl patch it seemed to turn my whole life around. and I even posted and bragged about how well it worked ,not realizing that it can have devastating effects in the long run. in my case 6 weeks with no pain at all, but then it basicly started to fuck with my brain so bad that it turned me into a pshyco, voices in my head severe insomnia, of course they had meds to take care of all the side effects.eventually my pshycosis got so bad that i had become a danger to myself as well as the people around me .at that point i was taken of the patch and went thru hell detoxing of this drug . today i am still dealing with all of the things that this drug did to my brain in the short 6 weeks of use . i was warned about the side effects of this drug but hey it seemed to work very well at first and it gave me something nothing else had been able to in years . just didnt expect it to a actually make things a whole lot worse. please be care full and well informed and even then you could end up regretting the use of such drug.ERIK.
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dtruett
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Re: Doe anyone else use narcotics?
« Reply #15 on: Nov 13th, 2002, 6:58pm » |
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Hey Sonny, remember me?
I'm so damned glad to see you posting and asking the whole community for help. As you stated in our private Emails, there are a lot of people who think about ending it. As I replied, JUST DON't. Yes that's me the guy who started the Suicide thread. You just never know when the nature of this thing will turn around or when a new treatment or med will come along. You are showing me how strong you are by asking questions now.
As to narcotics, I take the middle road. Imitrex shots are the only thing keeping my 9s and 10s at bay every night, but I still am unresolved with the insurance issues. Again, I posted earlier, if anyone knows where the info on contacting the manufacturer directly to appeal is now, please Email me. I wish I had bookmarked it. Until that is resolved, I use some Imitrex and save some. When I don't use it, I take Percocet, which takes longer, but does take off the edge. Problem is the rest of the night. I have an opposite reaction to some drugs, like benzos that are supposed to make you sleep. Percocet wires me all night and gives me "big palpitating heart" and vision so bad that I literally can't read across a line of print for awhile. Imitrex does too, but to a lesser extent. If I had all the Imitrex I need, I wouldn't touch the stuff, but until I am assured of it, I am going to hoard it. It's just tough to sleep one or no hours a night.
Hang in there buddy. As you commented after reading the whole suicide thread, this is the most wonderful, knowledgable, compassionate community there is. All the advice, psychological, medical, etc. is here. Please keep using it. I know I will. Talk to you again soon from sunny San Diego.
p.s. Think the Chargers have a prayer against the 49ers this Sun.?
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Jackie_L.
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Re: Doe anyone else use narcotics?
« Reply #16 on: Nov 17th, 2002, 12:46am » |
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First, Hound Dog well put..I have been stating this very thing over the over for years....
I am not going to go into to much detail or legthy discussion here about this but..As for the narcotic question on if anyone else finds relief or uses these on or off the board at present for ch ...YES... But the problem has been, in the past, that many who have stepped forward and said Yes they do work were basically told to shut up about the discussion, threatened, bashed, told in no uncertain terms to NOT discuss that on this board (mostly through private e-mails to the people) etc etc etc...SO that is why you don't see much about that here... which is unfortunate for those who do find relief from using narcotics and making that choice to do so..
But again yes their are MANY here on the board who do use narcotics etc for the ch, will they admit it here..probably not...LOL...which to me is sad...I don't think it should be a taboo subject...But not many people truely understand about the addiction/dependancy issue of it...or understand general stuff about how this works with chronic pain or acute pain...and then the general taboo of taking this and so many saying Nope that doesn't work.... which for some it doesn't...but their are many other drugs non narcotics that don't work for everyone either...so it is an individual choice on what you do...
and yes I do use narcotics and have for years for chronic pain and also ch and NO I am not addicted or dependant on them, I forget to take them unless I am in severe pain..... Hope this helps.. Huggs Jackie L.
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