When someone lives with chronic debilitating headaches, opioids are the last line of defense. After trying a gazillion preventives and abortives with no success, reducing the severity of the pain is worth potentially living in a drug haze.
However, many of those who do “cross over” to opioids describe feeling like they’re treated like drug addicts and that their docs don’t prescribe enough meds each month to cover all their painful days. They also worry that maybe the doctor is right — maybe they are drug addicts.
The stigma makes it hard to ask for drugs. Remember that if you are a chronic pain patient, there is absolutely nothing wrong with asking for meds to dull the pain. Quite simply, if you don’t get pain relief from less potent approaches, you should seek better relief.
Doctors will be cautious in prescribing opioids and may not do so on your first visit. It’s his or her job to keep you healthy — feeding a drug addiction isn’t healthy. It is frustrating but it is also safe. The doc doesn’t know you and doesn’t truly know what you’ve been through. They also have the government breathing down their necks, making sure the docs aren’t just supplying addicts with drugs.
I’m tackling this topic after giving a friend suggestions on how to convince her new pain specialist that she’s ready for opioids. The message reads like I am advising her to rely on manipulation to get her doc to prescribe narcotics! That’s not the approach I want to take, but it can be outrageously difficult to get the pain relief you need.
The topic is ginormous. I don’t want to bite off more than I can chew, so I’ll noodle on the topic some more. Think of this post as a sort of thesis statement for other posts on pain management and opioids.
My Mother is suffering from Chronic headaches from the time she wakes up to the time she goes to bed. She has been treated at Jefferson Hospital in Philadelphia and John Hopkins in Baltimore MD. So far she has had infusions, Botox and meds and is only getting worse with each treatment. In the last 6 months I have never seen my Mother so debilitated. Is there anyone out there that can help with new information that could help her.
Thanks,
BJ
i have frequent headaches as well i was taking 5/500 vicodin 3xs a day until recently my doctor put me on mscotin 30 mga 3 xs a day and it seems to help i was in an accident 2 days ago and now am on percoset as well i have to have surgery on my neck
I’ve been suffering for migraines too, for 7 years now and I’m only 19. I recently moved to another province and getting my pain meds back is really hard. I was prescribed Supeudol 10mg (oxycodone). It’s basically Percocet without acetaminophen (NOT acetametaphene, for someone saying people are misinformed, misspelling the most basic drug is pretty ironic…)
I really think Migraines should be taken more seriously by doctors, most of them just saying “it’s a headache, take an Advil and go to bed”. It’s insulting! I’ve been on so many preventative medications and abortive medications it is ridiculous! The only thing that works is Imitrex, and even that fails if I don’t take it at the very onset of my migraine. As someone mentioned it is sickening to waste a 15$ pill when taken too late. I ended up 2 times in the ER and only a shot or 2 of Morphine kills the pain I get from those crippling migraines. The problem is that my girlfriend misses some days at work because of my ER visits, which makes me feel guilty. All this could be avoided with a simple prescription from my doctor.
Anyway I’ve got an appointment with a new doctor that will hopefully put me back on my old regimen of medication. Wish me luck!
Fred.
been sick with migraines since childhood. mom and maternal aunts and my sister had them. my newest neuro. dr wants me to go back to michegan head pain and neurological intstitute(mhni). last time there in 93- no relief now 15yrs with multiple migraines each month and cdh too. anything new in mi, any info. at all?
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Treatments have changed dramatically in 15 years — even in the last five years. I don’t know know the exact treatments MHNI uses, but am almost positive they are using new methods.
Best of luck finding a good treatment.
Kerrie
I have chronic neck pain and very, very, very frequent migraines. I also have occasional cluster headaches. The neck pain is from being rear ended 4 years ago by a man going 55 while I was at a stop sign. I take Imitrix for the migraines and have 4 to 5 times a week since 1989. I used to fly to England or Canada to get it as the FDA had not yet approved it here. Recently, one year ago, I began taking loritab. The doctor was giving me 150 of the 650 10 tabs a month. It eliminated the neck pain. I did not expect it to help with the migraines. Suddenly the doctor cut me off of the loritab with no warning. Needless to say this was a difficult transition from 5 a day to 0 with no warning. I understand all Docs are uptight about prescribing pain meds, but I know what works and what does not. Is there any way to find a sympathetic Doc who will not be paranoid? I need the med and now I have to deal with the pain of neck, headache and withdrawal. Thanks, Jeff
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I really don’t know what to say about finding a doctor who prescribes pain meds. If you bounce from one to another, you’ll look like a drug seeker. You could check a chronic pain or headache forum for doctor recommendations. There are tons of forums out there; Migrainepage is my favorite for headaches: http://www.migrainepage.com/cgi-bin/dcforum/dcboard.cgi
Best of luck treating your pain.
Kerrie
i have been on about every possible painkiller out there & my problem now is that in order to get any pain relief (& not even total) i end up getting what most would consider a “high” which i do NOT enjoy. In fact i can’t wait for it to pass. I was on methadone for years and didn’t like how that made me feel either. I also took oxyCODONE, which is Percocette without the Tylenol, which they are now discovering how bad that is for your kidneys & esp. your liver. I know the others tax it too, but i believe that acetametaphine (tylenol) in any form is worse! if taken for long-term pain management. Percodan is oxycodone with aspirin which would not be good either; that’s why it’s given in small doses (81mg. a day for heart disease prevention) as it is a blood thinner. I recently got off the methadose/done, my way, as the doctor wanted to play it “safe” at my expense (suffering). I did it during a change in doctors–as they don’t make it easy to honestly “experiment” with what works best with each individual. And i think, no, I know my body better than any doctor as i’ve lived in it for 55 years! But caution here–research as much as possible, talk to pharmacisistS & not just one. Ask questions, discuss it with others who share your dilema, use these forums. Unfortunately, i saw a comment that was not true, saying oxycodone was percocet-tho it does contain it, it also has the Tylenol, which may be a bad thing is the long run & he omitted that. So not everyone is that well-informed. Read the literature from the company which HAS to say what it contains & in what amounts–usually mg.-like percocet is 5mg,(or 10) oxycodone, plus 325mg acetametaphene or 500mg if it’s extra strength, more tylenol!) I’m surprised that there is no monitoring of Tylenol! But my problem is that i truly want to take the least amount possible to kill the pain without getting high, or drowsy. I got a DUI on less than my usual amounts of meds in my system, zero alcohol and no narcotics even. it was my diazapam! And FYI, even OTC medicines like antihistamines can get you a DUI–anything that makes you drowsy! Believe i went thru it for 2 years, thay wanted me to go to a treatment center! only because they knew i had insurance to cover it. When i got another assessment and paid the $100 forit & said i had no insurance, I didn’t need to go to a treatment center at all, just an 8 hour class! Shows how it’s about the money; so if you ever get stopped & they do a blood test & accuse you of driving under the influence (unless you really are too medicated) don’t admit to having insurance if you need to get an assessment! Now that is over (it stays on your record tho & 3 years of Extra ins-oh, i also was turned down for 4 places & went homeless for over a year & lost custody of my daughter–so please drive safely!!) Now my tolerance is up & i don’t know what to do. My new doctor is not as tough, but still it’s always gonna be up to her to decide. I’m prescribed MScotin 30 mg x 4 a day with 4x 5mg oxycodone for break-thru pain; some days it’s not enough; other times it’s too much. I have more control of the short acting (only 2-21/2 hrs) than i do of the longer acting morphine sulphate (30mg.MScotin) & was thinking of switching the other way around by taking 15mg.MScotin x 4 and 10mg oxycodone (which can be broken in half where the controlled-release ones CANNOT!) But i’m afraid to ask the doctor in case it doesn’t work, she doesn’t agree & thinks i’m drug-seeking, or won’t switch it back if it’s not enough. If your lucky enough to get a doctor who will let you try different combinations in hopes of finding the right one, you are blessed. But if you’re not you’re screwed. Why don’t they see that. At least give you a chance to just have some semblance of what people take for granted, a normal (somewhat–it will never be “the norm”). We deserve a quality life as much as healthy people do & to think i am a health nut according to some (or was–i’m a CMT, shiatsu, aromatherapy-which helps some! and very knowledgeable in nutrition) & to end up with FM/CFS, arthritis, carpel tunnel, DDD, TMJ, migraines-most of which I live with on a daily bases–i always preached the alternatives until i found myself with all these chronic conditions!! Now i feel so bad–not just from my pain, but that i didn’t have the compassion i now find lacking in most people…it’s such a shame to have to live like this, when there are those out there abusing the very meds we need to survive–to just get by, even only to take the edge off!! I hope this has helped even only one person, i feel i have made a difference. Sorry it’s so long, but there is so much left unsaid & not enough doctors who listen. Anyone can contact me–God Bless All…
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I’m sorry that you’re suffering so much. I hope you’re able to find some relief. Best of luck.
Kerrie
wow this blog is great, I had hyrothyroid so I was getting migraines 4 times a month sometimes more, after a year of synthoid use im back to my normal one to two a month . Im given 20 percs a month and I wish I could get something that would last longer. I asked for ms cotin because they say it lasts longer but my doc wants me to stick to this. Im also trying a new med to stop me from throwing up on my migraines. ps
does anyone ever hear voices in your head during your peak migraines
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Thanks for the kind words. I’m glad to hear that the frequency of your migraines has lessened.
I’ve never heard voices. Anyone else?
Kerrie
I believe I suffer from chronic tension headaches because I have none of the symptoms listed for a migrane headache. At first we started on Duragesic patch, after a year I was tolerant to that and asked to be switched because it wasn’t working. He switched me MS Contin, which helps some, and Percocet for breakthrough pain. As of late I notice the MS Contin isn’t helping as much and I suffer for hours each day. Only when I told him, he is trying me on migraine meds, Imitrex, Relpax, and Tenormin, a high blood pressure med. Why is he treating what I thought he understood to be tension headaches,not migraines, but keeps trying those meds without any relief.
I know he’s watching which narcotic meds. he’s prescribing, which is good, except I suffer more than he prescribes. How do I get through to him? He also gives me fiorinal for my headaches, which helps, but for a short period of time, then I go back to suffering. And why doesn’t MS Contin, which was also being prescribed for fibromyalgia and low back pain, or percocet work on my headaches? My lower back pain was helped with surgery when they found a bad disc, but why doesn’t the other two meds help for my headaches? My head hurts more than the current meds help. Why is this?
Sincerely,
Pami
inafield@zoominternet.net
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I’m sorry you’re suffering so much. I’ll answer your questions the best I can.
Some headache specialist believe that tension-type headaches and migraine originate in the same part of the brain. There’s also some evidence that triptans can help tension-type headaches. That’s enough to make it worth trying triptans, which are migraine-specific.
There are seven different triptans and some people have to try a lot of different ones to find one that works for them. Of course, there are people that they don’t work for at all.
I don’t know why painkillers have worked for some of your pain but not your headaches. There could be a rebound effect effect going on — after taking them for awhile they could trigger more headaches than they help. Here’s some info on them: http://www.headaches.org/consumer/educationalmodules/completeguide/other.html
I hope this helps. Let me know if you have any other questions and I’ll try to help.
Kerrie
IHAVE BEEN TAKING OXYCONTIN FOR THREE YEARS NOW FOR CHRONIC BACK PAIN IT STILL DOES NOT CONTROL THE PAIN I AM ON 40MG EVERY SIX HOURS BUT I HAVE SEVERE FLUID RETENTION AND FEEL AS THOUGH I AM ABOUT TO BUST I STARTED OFF AT 58KG AND AM NOW 91.6 PLEASE HELP ME
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I’m so sorry you’re suffering so much. I’ve never had something like that, so I can’t really give advice.
I wish you the best of luck finding some answers. Take good care of yourself.
K
In response to “Liz” from June 18th, I just found this site and read your article. I know its been a while since you posted, so I don’t know if this info will be a repeat for you, but I hope this helps! I have been a chronic pain patient for years too, it can be frustrating,but have patience. I am allergic to NSAIDS it caused renal failure in me so I understand your limitations! There is a lollipop it is an oral dose of fentenal (spelling?) I used it for break thru pain for a while but I am also diabetic and it caused problems with my sugars so I had to stop. Other wise it worked for break thru pain, have you tried Demerol? Either by mouth or injection? Some people find one works better than the other usually that IM (injection) worked better than PO (by mouth). It seems you have been thru most of the usually suspects,( as most chronic pts. have!) You didnt list Roxicodone or Oxycodone they are like Oxycontin but are more short acting and have small differences. They are not as strong as the morphine agents(MS Contin, MSR) or Dilaudid. Something else not as strong is Tylox, it has tylenol in it so HIGH doses for extended periods are not recomended. Others in or around that class are: Percocet,Darvocet(to me its as good as a glass of water but it works for some)As for swelling everyone responds differently so its just a matter of try and see, wish I could tell you other wise! Only you and your doc can determine this, But when I tried the Duragesic for the first week or so I had itching all over without hives. (sensitivity to the adhesive) But after a week or so the itching sud-sided, unfortunately I had a hard time getting them to stay on…which they suggested I try using spray on anti-persprint before applying the patch (even though sweating was not the cause of them falling off) It worked! Like I said though I dont know how severe your reaction was or what your doc thought of it, but if it was minor and he agree’s to it you may want to give it another go. Keeping your fingers crossed that it sub-sides. Just a thought? I hope you’re able to find something that works well for you, the combinations are different for everyone as are the results you get from them. And it doesnt hurt to try something again, I had tried Methadone a few years back and it knocked me OUT. I was put on Oxycontin after that and did great with it, but I wanted to come off of it after a few years so they gave me the methadone again to bring me “down” off of the oxy and I responded fine to it then. I didn’t have even the smallest problem with it. So sometimes it works to retry things even if you had built up a tolerance to it, after a break from it you may find it works again for a while and you may not?! Well I hope I helped a little, I know how hard it is to be in pain hoping and praying for something that fits you. Good Luck !
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Wow, thanks for so much detail, Angie. It’s not only helpful for Liz, but for the rest of our readers.
Take care,
K
MY DR. SWITCHED ME FROM LORTAB 10/500MG 4 TIMES DAILY TO PERCOCET 3 TIMES A DAY. BUT I WAS ALREADY ON 12.5 OF HYDRCLROOTHIAZIDE (HCTZ) BUT I STARTED HAVING WHAT THEY CALL “PITTING” EDEMA. SO I DOUBLED THE DOSE OF THE WATER PILL. AND I DON’T KNOW WHY I AM HOLDING FLUID???? CAN SOMEONE HELP ME? IS THIS A SIDE EFFECT OF THE PERCOCET… LEGS SWELLING UP?? AND ME SWELLING UP, BUT I ALSO DRINK ABOUT 6 CANS OF DIET SODA, I AM DIABETIC, NON-INSULIN, A PILL A DAY. I DON’T KNOW WHAT TO DO. CAN SOMEONE GIVE ME SOME ADVICE???? THE DATE IS 8/08/2006
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I’m sorry, but I really don’t know what’s going on. I wish I could help.
K
Hi, I so agree with you. I take duragesic 25mcg patch for back pain,(I fell down the stairs with my baby 8mths ago) With percocet as a break through. It helps some but not intirely. I don’t know much about these narcodics though the doctor seems to differ with that. I can’t take a higher duragesic because they completely knock me out. I need a stronger break through to help me through the hard times of the day, but I don’t know what is less or more with these things. I asked the doctor what he thought but he just said which do I feel works best. I have been on so many different ones that I don’t know what is what anymore. Could someone help?? thanks KIM
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I don’t think I can be of much help. I think that most people just try different meds until they find the one (or ones) that work best.
I recommend visiting one of WebMD’s forums for more information. The forums all have professional moderators who have lots of information. The two that might help you are:
Back pain forum — http://boards.webmd.com/webx?50@695.VAMrb4MTJNZ.45@.5987f407
Pain management forum — http://boards.webmd.com/webx?50@695.VAMrb4MTJNZ.45@.5987f44d
Best of luck. I hope you find some pain relief soon.
K
I have been a chronic pain patient since a truck ran into me days after my 7th back surgery. It’s been years of trying to find the right dose of pain meds. We thought we landed on the right thing when my pain doc. prescribed 24, 8mgs Dilaudid per day, with Norco for a breakthru medication. Things were fine for a year then one day (literally one day) I realized I was really “puffy” and I went to the doctor and not only had I put 10 lbs. on from the day before but over the next 9 months I continued to put fluid on until now I have 20lbs. of fluid sloshing around my tissues! I’ve been thru every cardiac test..all ok. I’m being sent to a nephrologist this coming week because now they think that my vascular system is “leaking” into my tissues. However, my regular doctor seems to thing that it was the Dilaudid because it has a histamine in it. I was changed to 80mgs, of Oxycontin to be taken 9 times per day (Yes, these are high doses, however my tolerance to pain meds is unbelievable) My question is, what type of strong pain medication would be best that would NOT cause fluid retention!! I’m normally 119, and I need to be that thin due to my back and the fact 1/2 of it is fused. So now I’m 20lbs. heavier, and although all I hear is “why are you worrying? You look fine…etc.” it drives me NUTS. It hurts to walk…the fluid under my feet feels like walking on tennis balls!! I’m literally at my wits end. Does someone know of any strong medication that doesn’t cause fluid retention? I’ve tried the Duragesic patch but I was allergic to the tape (I had great pain relief, but the allergy went all over my body) MS Contin, Dilaudid, Oxycontin, Methadose, Norco, Vicodin, and I can’t take any NSAIDS due to the fact it makes me sick to my stomach. Can someone please help me with some sort of answer and to a different drug, or different way to take the drug…can you take fentanyl but not in the patch? Or is there some other way to get this fluid off. I have almost stopped eating because of this weight gain…yes, yes, yes, I know it is fluid, I see it’s fluid, but it doesn’t matter…it FEELS like fat!!! Please, I’m begging someone to help me!! I’m sure I’ve tried other medication…just can’t think of them all right now. I also can’t use the pain pump because I form terrible scar tissue. I’ve already had to have lysis of adhesions that caused a bowel obstruction due the the scar tissue from a 10 year old hysterectomy. I still form keloids and the pain pump has been ruled out. I’ve heard of some type of Lollipop with medication in it. Has anyone heard of that and what is it? Does it also cause swelling. HELP
It’s more of a difference between short-acting opioids (vicodin) and long-acting opioids (oxycontin). Short acting ones work for 4-6hrs, peak quickly and drop off quickly, creating peaks and valleys in pain control–ups and downs.
Long acting ones are formulated for time release over 12hrs(like a contac c capsule) start slow, release slowly and stop working slowly, giving slow and steady pain relief with NO peaks and valleys–no ups and downs.
This is why I started my blog–one reason anyway, to show the huge difference in the types of opioids out there used on a long-term basis. What I take doesn’t make me feel “woozy” like percocet used to make me feel, because it’s a totally different formulation. It’s not what I initially imagined it would be like. I thought I’d be nodding off like the heroin addicts in the movies, but it’s nothing like that. I was stunned when I first took these, and nothing happened.
I think this is a HUGE reason too why Drs don’t prescribe these drugs enough–they don’t understand sufficiently how they work. I could be wrong on that one though.
I’ll be talking about it more indepth–trying to! Trying to let people know what the differences are and how it feels day to day to live your life on opioids all day long. I think a lot of people will be surprised, and I think many won’t believe me, but I feel like I have to try.
reducing the severity of the pain is worth living in a drug haze might.
I’m just curious where you got the notion that there was a “drug haze”. Do you know people who are on opioid treatment for migraines? was it a doctor who said that? I’m honestly just curious, cause I think most people think this is what it’s like. In reality, it feels nothing like that at all. I feel more side-effects from topamax. Honestly.
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You bring up a great point that I definitely need to address. As with any drug, it just depends on the person. For example, I’m fine with Topamax but hazy with Vicodin.
K