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mishkyn	Sep-14-01, 07:22 PM (CMT)
"Need advice on long-term opioids"
Dear group: After 28 years of daily pain and over 100 preventatives, not one of which ever touched my pain, I have finally decided to try long acting opioids. I have researched the use of the different drugs, amounts etc on several chronic pain and headache sites, and in various journal articles. What I discovered, and what was confirmed to me by a dr. I saw in New York City on Wed was there is a huge prejudice in treating headache patients as pain patients. (I also have rheumatoid arthritis, but it didn't seem to matter). I saw someone described as "The Mother of all Pain Doctors" on a well-known chronic pain site. After a 4 month wait to see him, found out that he is being influenced by one study from a headache clinic (Joel Saper's in Michigan), even though the dr said one survey shouldn't govern treatment, he still seemed to take it as protocol. The study found that only about 25 per cent of people with daily headache treated with opioids got better. I found out why: he gave the headache patients barely any medicine. Example: Saper says he gave 5 or 10 mg of Methadone twice a day, and 16 mg oxycontin twice a day. Plus no breakthroughs because he is worried about rebound. Read another study where the highest dose was 15 mg Methadone x 2. And most studies I read said it was crucial to keep the headache patients' doses as low as possible, that rather than increase them when tolerance develops as they do with all other pain patients, to take them off completely for a few months and (while letting them suffer terribly--let's face it) then put them back on again. This is barbaric. Every other pain patient is dosed on these meds three times/day. And they are commonly on 120 to 200mg Methadone/day, or 180 to 320 mg oxycontin/day. PLUS breakthroughs any time they need them. Plus muscle relaxants and meds to help sleep or whatever they need. I am so sick of this prejudice. I have numerous printouts stating that migraine is one of the most terrible pains ever known. My headache dr (totally narcotic phobic) told me that other docs realize how bad migraines are when they deliver babies of migraine patients or perform any type of surgical procedure, including major surgery. This dr was kind, extremely kind, but he also said he doesn't really see patients, and that he would have to pass me off to a nurse practitioner, a resident, or a collegue to titrate and treat me and he would see me every 6 mo or so. I actually learned this about him from another patient 4 or 5 weeks ago, called his assistant and asked if it was true so I could change drs, and she said, "Oh, no, he sees them when he needs to." Sorry to be so wimpy and whiny in the midst of our genuine and terrible monumental tragedy, (and I live in NYC--it is so scary here, group--genuine police state, we are constantly getting bomb scares and having to evacuate the subways, office buildings etc. for several blocks all around. 90 false bomb scares yesterday). And being O-negative, I am the universal blood donor and will be giving blood for the 3rd time tomorrow. This is a kind of, "Please don't hate me, I'm not totally self-involved," statement. But I need my pain cared for too, and this is when my chance came up. This dr. told me the truth at the end of our meeting, after he took up one of my insurance meetings--they are not unlimited. Why he met with me is a total mystery. Even the secretaries said they don't think he should see patients and doesn't know why he does since all he does is drop them. Since he is the head of the unit, I am guessing his associate, who came to their present hospital with him from another NYC hospital, is going to be the same. Any suggestions on what to say? Why this prejudice on headache pain? He said they were afraid of rebounds and would let me use breakthroughs like I now use vicodin, maybe twice a week. Great. Everyone else uses breakthroughs daily to help calculate how their base medication is working and whether and when it is time to up the dose. Have been emailing some people: one man told me he went to 5 doctors, none of who would treat him for pain because he had daily headaches. Finally he found a dr. who treats him like any other chronic painer, and has had success. I apologize, this is so jumbled and I know I sound as desperate as I am, but after a taxi accident 11 years ago, I had to go on disability as my pain levels became intolerable. Also get 2-3 migraines/week, plus several episodes of status migrainous per year lasting 2-14 weeks (just set a new record.) I feel like I've been kicked in the gut. I am distraught and reading articles on the web did not help. So many characterize headache patients as anxious, depressed--often both. Could it be because our pain is so terrible and so dismissed? That because drs can't help us with the meds THEY want to make us well--like beta blockers and anti-seizure drugs--it must be our fault. If anyone could please tell me your success or non-success stories about using these meds, I could have something to show him. Have been reading the posts by those of you on the other thread. If you want to keep it private, could you email me privately? I am so sorry to put anyone to trouble, but my "last option" is not one I really even want to consider. But after this--how much hope can a person have destroyed year after year? And I never even heard of long-term meds until 5 months ago. My hometown (where family is) doc is in a famous headache clinic that I am sure is scared of the oxycontin etc controversy--research funds and drugs just pour into their posh facilities. And the dr who writes my scripts in NYC never ever mentioned opioids. Both drs know how much pain I am in and how desperate I am. I don't know how they can live with themselves. I've tried other drs--many many through the years, but they would look at all the prevents and say to me, "I don't know one/quarter of this stuff," charge me $475 and decline to treat me. Been through the mill, and just when I saw a light...blackout. I feel like an idiot, I have never actually asked--begged for help like this before. But I have nothing to lose. I am hoping the new dr. will buck convention and go for broke--what can it hurt? rather than tip-toe around the headache. Please, if anyone can help. I need it so. Thanks, and God bless us all, and if you could see the NY people, you would all be so proud, just like I am, even though I'm a midwesterner. I had a fear we might be too spoiled to make all the necessary sacrifices that are looming large right now, but the super spoiled NY'ers are all pulling together and performing major and minor miracles constantly. For the first time in 20 years here, I heard not one car honk while caught in a 3 hour traffic jam. This from a town where every car honks 2 hrs am, 2 hrs mid-day, and 2 hours pm, plus all day Sat and Sun. If anyone can help, I'd be so very grateful, and no matter what, I am grateful every day for this group. Thanks, be safe everyone, Mishkyn
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opiods, Debra, Sep-14-01, (1) RE: Need advice on long-term opioid..., leebones, Sep-14-01, (2) Dear Mishkyn, hpilgrim, Sep-14-01, (3) RE: Need advice on long-term opioid..., basketcase, Sep-14-01, (4) RE: Need advice on long-term opioid..., mishkyn, Sep-14-01, (5) RE: Need advice on long-term opioid..., VickiG, Sep-14-01, (6) RE: Need advice on long-term opioid..., Lulubel, Sep-15-01, (7) RE: Need advice on long-term opioid..., Diana McBride, Sep-15-01, (8) RE: Need advice on long-term opioid..., mishkyn, Sep-15-01, (9) RE: Need advice on long-term opioid..., Ouch, Sep-15-01, (10) RE: Need advice on long-term opioid..., tmensink, Sep-15-01, (11) Hi Mishkyn :-), Rose, Sep-15-01, (12)

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Messages in this topic

Debra	Sep-14-01, 08:28 PM (CMT)
1. "opiods"
I have worked with Drs for twenty years. I have learned that if you start these drugs you might as well plan to be on them for life because of the addicition and withdrawal problem. I suggest other remedies. There are many combinations that could help you.
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leebones	Sep-14-01, 08:38 PM (CMT)
2. "RE: Need advice on long-term opioids"
I do take opiads daily. It took me a lot of years and alot of doctors to do this. I do take a daily low dose of morphine compared to alot of people. I take 20mg by injection I can have up to 2 per day. And I also have 10mg. tabs that I take up to 6 at a time. Usually 3 is what I take. I also use injectable gravol with the morphine, without it it does not work. I went to a pain clinic about 1 year ago. They concluded that the only thing for my migrianes was morphine. They sent a letter to my doc saying that is what I needed. The doc I had said he did not want to prescribe it. So I had to go doc shopping. I took the letter with me and asked outright if they would prescribe this for me. I did find one quite quickly. He is a doctor that most of my family uses. I have had wonderful care from him. I am very thankfull for him. I am nervous that it could all of a sudden be cut off and then what will happen to me. dont know. wendy if I can help you in anyway please feel free to contact me. leebones123@home.com
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hpilgrim	Sep-14-01, 08:46 PM (CMT)
3. "Dear Mishkyn"
I am so sorry you are having this terrible time, and can completely relate... right now the only "opiod" I take is Lortab (hydrocodone), and that was prescribed to me for my back, not my head. I have said before on this board that regular neurologists and pain specialists don't necessarily understand migraines. (I'm sure not all MIGRAINE specialists understand migraines...) Surely in the greatest city in the world, they have somebody who specializes in migraines, and can help you-- I believe your arthritis plays a part as well... I'm sorry I don't have more to tell you - try a headache specialist (if you haven't)... and you'll be in my prayers.. Holly in Ark. where we have the flags flying!
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basketcase	Sep-14-01, 09:42 PM (CMT)
4. "RE: Need advice on long-term opioids"
LAST EDITED ON Sep-14-01 AT 09:53 PM (CMT) please see this web site: http://asappain.com/ it's a site for pain management advocacy. you'll find some useful information, printouts, arguments to use with your doctor, numbers to call to report mistreatment. you're right. its terrible how we're treated. seek the help YOU need for YOUR life. if you have epilepsy, if you start taking antiepileptics, might as well stay on them for life because of the trouble with withdrawal-true. seizures or medicate for life or withdrawals(status epilepticus) the same may very well be true. migraines or pain meds or withdrawals. though if you make the decision to quit pain meds, you can be medically managed. they can titrate you off as they can with seizure meds.
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	mishkyn	Sep-14-01, 10:03 PM (CMT)
	5. "RE: Need advice on long-term opioids"
	Dear Group-- Thank you all for your swift kind replies. And Debra, because you mentioned all the options out there--here is my eye opening list of the other options I've tried in 28 years of pain. (Also a list of "other therapies.") Except for a couple of dozen that had to be stopped immediately, most were taken at least 3 and more often 6 months. Even then they were not given up on but a "booster" was often added. Not one helped. I hope someone learns a lesson about preventatives from this list. On the other hand, it is quite a good reference. I think I qualify for having given it the good fight. And the narcotics I have taken have been used perhaps 2 or 2 and a half years (on and off) during 28 unremitting years of pain. Sorry for the length, but I feel like a true fool of a guinea pig trying one drug after another when all I got were side affects. Here goes: Total: (That I recall) ADAPIN AMERGE ANAFRANIL ANAPROX ATENOLOL BELLERGAL BENTYL BUSPAR CAFERGOT CAPLAN CALAN CARDIZEM CATAPRES CODIENE COMPAZINE CORGARD DARVOCET DARVOCET N 100 DEPAKOTE DESIPRAMINE DESYREL DHE-45: 3 series of 15 injections,some individual injections DIAMOX DILANTIN DISALCID DOLOLOBID DONNATAL EFFEXOR ELAVIL EQUAGISIAC FELDENE FIORINAL FLEXERIL HALDOL IMITREX INDOCIN ISORDIL KLONOPIN LIBRAX LIBRIUM LITHIUM LIMBITROL LO-PRESSOR LORCET LUDIOMIL MARPLAN MAXALT MIDRIN MIGRAL MILTOWN MYSOLINE NALDECON NALDOL NARDIL NEURONTIN NIMOTOP NORGESIC FORTE NORTRIPTILINE PAMELOR PARNATE PAXIL PERCOCET PERCOGESIAC PERIACTIN PHENERGAN PONSTEL PREDNISONE PROCHOLORORPERAZINE PROZAC NIPODIPINE ORUDIS RESERPINE RESTORIL RITALIN RISPERIDOL SANSERT SERENTIL SERZONE SINEQUAN SOMA SPARINE STADOL NASAL SPRAY STELAZINE SURMONTIL TEDREL TOFRANIL TOPAMAX TOPROL TORADOL TRAMADOL TRAXENE ULTRAM VALIUM VERAPIMIL VICODIN ES VISTERIL VIVACTIL WELLBUTRIN WIGRAINE WYGESIC ZOLOFT OTHER THERAPIES: EXTENSIVE EXERCISE-ran 5 to 15 miles a day for 7 years to raise my endorphins. Not help a bit Swam, strength training and flexibility exercises (including some yoga) for 5 years straight and intermittantly since then-always do extensive flexibility and neck and shoulder exercises, swimming brought some help; bike riding-fought to stay active even through intense pain, but since March have been in too much pain except for simple flexibility exercisesBIOFEEDBACK-over 140 sessions. 100 at Diamond Clinic. No help despite being "highest rated patient ever" at DHC, 40 sessions at Johns Hopkins, more other at various pain centers ACUPUNCTURE-25 sessions at one dr, 15 at another: made me much worse (Both done with extremely skilled practitioners visiting major hospitals from Korea and Japan) DEEP MUSCLE MASSAGE 2x/week for 10 months, by Dr.Ben Benjamin ACUPRESSURE SEVERAL CHIROPRACTORS PHYSICAL THERAPY-of all types NERVE BLOCK---no help, done on both sides of neck (before accident) TENS TMJ Splints 1 and one half years weekly allergy shots Learned self hypnosis from one psychiatrist-helps many things, but never touches the headache. Use frequently for relaxation, nausea, and to unblock sinuses. Learned meditation, visualization and many relaxation techniques which I also use frequently. Have seen at least 5 psychiatrists over the years to help me deal with pain; been in group therapy as well. Help I received from therapy was non-existant, except for allowing me to get things off my chest.
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	VickiG	Sep-14-01, 10:06 PM (CMT)
	6. "RE: Need advice on long-term opioids"
	You are certainly right about migraines not being treated as real pain. I've been rejected from pain clinics three times on the basis that they don't deal with migraines. It wasn't until recently, when I found my headache specialist, that I was giving a long-term opioid, MS Contin. Now, while I still live in constant pain, the levels aren't quite as severe as often, so I am very thankful for a doctor who is willing to help me with this. He told me that there is no real worry about rebound because that comes when you have the drug in your system coming and going. These drugs don't do that. They keep a steady amount in the body. He also told me that there is no high end that anyone can take of these meds, so we will just keep titrating it until we get to a place where I have some pain-free days. I hope you find someone to help you with this. Someone posted on a discussion within the last couple days a link to a site that lists compassionate doctors who treat pain better. Patty has just gotten some help from the doctor she found there. Maybe you can get some help that way, since you're already doctor-shopping.
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	Lulubel	Sep-15-01, 06:50 AM (CMT)
	7. "RE: Need advice on long-term opioids"
	I myself have just started taking OxyCotin. It is working to some extent to where I have my life back but I don't take enough to completely take away the pain. It just makes me "above" the pain without the usual grogginess or buzziness of Lortabs/Vicodins which I was popping like crazy for about 2 years. I started out with 20mgs 3x a day, but it wasn't enough. I then tried over the Labor Day Holiday 40mgs 2x a day which only helped for about 6 hours, with too much breakthru. I did find that addition Tylenol and Advil along with Soma helped during the breakthru. But I was taking as much of that as I was before. So, now I am on 30mgs 3x a day. My Neruo and his PA both said that the life of one dosage is about 8 hours not the 12 hours it is stated. I take them about every 6 hours or so. I still have some problems (like this morning) where I had to add another 10mgs. It's just now kicking in to where my headache is almost toleralble. Just enough to be aggravating, but not enough to take another 10nmgs. I am hoping to go to 40mgs 3x a day after my next appointment next week. Hopefully it will stop the breakthru and I can back off the additional Tylenol and Advil. If my liver doesn't fail, my stomach is going to fall our from chronic indigestion from the Advil. It took alot of doctors visits, drug cocktails, physical therapy, muscle stimulators, trigger point injections and nerve blocks, Botox to finally get where I am today. I've been accused of "liking" the feeling of the hydrocodone, I have gone thru withdrawals to get completely off the pain meds to prove I had true pain and was not an addict seeking a high, I have been frustrateed and in tears many times over the course of my life due to pain. It finally took my husband to go with me on several appointments to finally get the treatment I needed. I am no longer ostracized in the doctors office since I had to prove myself. At times I feel humbled by what I went thru, the problems I caused my family, but I feel better now and hopefully with the help of the Oxycotin I will be able to resume some type of normal life again. Lynda
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	Diana McBride	Sep-15-01, 07:07 AM (CMT)
	8. "RE: Need advice on long-term opioids"
	Hi everyone, I looked through the list and I have tried about everything. I was on lorcet 10's 240 a month. About killed my liver. I am on duragesic (fentanyl) patch. It has helped alot and doesn't hurt my liver... yet. Anyway I keep it on for 72 hours, which my migraines used to last 3 days. I have 2 herniated discs also. Antway just wanted to tell ya about this patch it has helped so much and don't have to go get shots as often. Hope it gets better for all of you. Love and Prayers Diana
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	mishkyn	Sep-15-01, 08:50 AM (CMT)
	9. "RE: Need advice on long-term opioids"
	Thanks again for your honest revealing responses. I did get this dr from Skip's ASAP list--he is listed there as the "Mother of all Pain Drs.". Ha. Have been to many headache clinics and many pain clinics over the years just looking for a new perspective. I think it is truly a matter of finding a dr who is unafraid of bucking the usual system, i.e. headache patients are nuts/not in real pain. And having the guts to knock the socks off the pain like they do with everyone else. If anyone wants to contact me privately, just click on the letter looking symbol next to my name or use: hippogleam@operamail.com Thanks for responding. Just reading my post is a bit of a chore. Mishkyn
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Ouch	Sep-15-01, 01:09 PM (CMT)
10. "RE: Need advice on long-term opioids"
Mishkyn, Thank you for spacing your long message. It enabled us to relax and read it, and it Needed to be read! So many of us completely identify with what you said. Don't feel bad about mentioning your frustrations and pain during this time of National Pain. The National Pain doesn't hinder our migraine pain at all. We are still in just as much pain--or more so because of the National Pain--as we were before the terrorists attacked. Sandra in Oregon
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	tmensink	Sep-15-01, 02:07 PM (CMT)
	11. "RE: Need advice on long-term opioids"
	HI, sorry to hear things did not turn out with your HA specialist, but don't give up. I do agree with what you said about giving pain meds, as my pain specialist told me that MOST doctors try pain meds and then right them off as not working and it is mainly due to the fact that the dose is incorrect. THe hard part is it takes time to get the dose to the appropriate amount that it gives you the most relief you can get. It took me almost 20yrs to find a specialist willing to prescribe long acting opiod treatment and this is now my second yr on it, and even though I am not without pain being on these meds have given me my life back literally. I believe that if I wouldn't have started on them I wouldn't be here today.I just got to the point where I couldn't stand the pain anymore!! THe doses you mentioned having to give seemed high even to me, and I am on a fairly high dose, I don't think there is a set dose I think between your doctor and yourself you have to find the right dose. In my case my doctor and I discussed quality of life as being our major goal, so we wanted to give me as much pain relief as possible without turning me into a zombie. We also set caps on how far we will go before we would change to a different med. I found I really felt comfortable with this approach, it seems like we were both on the same track. I think more than anything you need to find a doctor who really wants to help give you some relief as it seems a simple cure is not to be had in alot of cases. In my case after I agreed to do everything they asked, which at times I felt like throwing in the towel, was when they FINALLY decided that my migraines were complicated and that there was definate health risks to me just living with the pain, it seemed like when they came to there own conclusions which was what I had been telling all doctors for years was when I got proper help. Now I take 40mg of methadone 3 times a day, this is a recent adjustment to try to get me some more relief. I am tired on this dose but it is only the end of the first week so it will probably pass. I do use breakthrough meds but I only use them to a max of 3 times a week, and I have available 3 injections from the hospital if need be. I am not allowed to just take the breakthrough meds when I need it, I wish I was but I do realize why I cannot, so I constantly fight with myself on which ones to use the breakthrough meds on. I just wanted to let you know that I was in your boat, but now this is where I am at. I have had lots of problems with doctors those who are willing to help and those who do not want to etc. But I hung in there and I think thats what a person has to do, we have to have hope that there are doctors out there that do understand our condition and the amount of pain we are in. Remember its your life, and you have a right to be as comfortable as possible and you deserve to be treated properly, so keep looking you will find the doc you need, hopefully it won't take as long as some of us. Keep your chin up and know your not alone. If you want to email me, if I can help just let me know, keep me posted I care. Bye ROxy. Oh, forgot to add what someone had said about if you go on these long acting meds your basicly stuck the rest of your life, some may think that is true I don't , but I know there is many people that are stuck on certain meds for life to be able to live with a certain condition in most of those cases knowone would even consider not taking the med because of having to remain on it. Why is it so many people look at migraines as some phantom illness it is real and it can even be fatal, so why shouldn't a person get the best medical help that they can?? Take Care.
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Rose	Sep-15-01, 09:07 PM (CMT)
12. "Hi Mishkyn :-)"
I have taken Oxycontin for 4 months now and was able to return to work (part time) on August 13th. I take 20 mg in the morning, 10 mg at noon and 30 mg in the evening with very little breakthrough pain. I tried methadone but had a lot of nausea with it. Good luck and please feel free to email me if you need to okay? Peace, Rose
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