Daily Opiate Use Among Migraineurs
Question:
Daily Opiate Use Among Migraineurs Increases Risk of Chronic Daily Headache WESTPORT, CT (Reuters Health) Apr 16 – Migraineurs who use opiates daily for any reason have an increased risk of developing chronic daily headache from the transformation of migraine, according to a report in the March issue of Headache. Dr. W. J. Becker and colleagues, from the University of Calgary, Alberta, Canada, studied patients who were taking codeine or other opiates for control of bowel motility after undergoing colectomy for ulcerative colitis. Women who were at least 1-year postcolectomy were identified for the study, according to the report. The investigators sent them questionnaires in order to determine if they had a history of migraine before surgery, if they currently had chronic daily headache, which medications they were currently taking to control bowel motility, and which medications they were currently taking for headache. Twenty-eight patients met inclusion criteria and returned completed questionnaires, the researchers report. Of these, 18 indicated that they took no opiates. Of the 10 opiate users, 2 indicated that they took only small amounts, and the remaining 8 patients exceeded the recommended limits for opiate use in patients with headache. Eight patients met the diagnostic criteria for migraine, according to the team. Two patients with a history of migraine who used daily opiates beginning after surgery developed chronic daily headache after surgery. The other six daily opiate users did not have a history of migraine and did not develop chronic daily headache. "Chronic daily headache occurred only in migraineurs who overused opiates," Dr. Becker and colleagues point out. "Patients without a history of migraine did not appear to be at risk for chronic daily headache even though they used daily opiates."
Response:
Wow, Mario, where did you find this? It sure is full of B.S., isn’t it? Good gracious…what ARE the "recommended limits for opiate use in patients with headache"? I find that kind of statement to be odd, since I’ve NEVER seen any recommended limits of opiate use for patients with headaches. Besides, wouldn’t there be recommended limits for different kinds of headaches? Migraines? Chronic/transformed migraines? Chronic tension headaches? Clusters? And many people have a combination of headache types. They sure didn’t spell that out. I think this study is a crock. ARE there "recommended limits" that the AMA or some medical establishment truly lists for migraineurs? What about those with CDH who are currently med free? What happens when they get put on pain meds for relief? If they are already med free and they are suffering daily, don’t they have some relief coming from the pain meds? How can you get worse when you’ve already got the daily intense migraines? They didn’t take this kind of thing into account in their study, now did they? They also didn’t make it clear if those 2 patients didn’t already have CDH when they started the study, from my POV. Then they say "Chronic daily headache occurred only in migraineurs who overused opiates" when they show no evidence of anyone "overusing" opaites! They only said these people used "daily opiates," but failed to identify what they were taking or how often they took it. Obviously one T-3 per day (which would definitely qualify as daily opiates here) is way different than 300 mg of OxyContin per day.. Were they pure opiates like MSContin or OxyContin or Duragesic? Or were they meds polluted with Tylenol or ASA, like T-3s and Vicodin? Did the drugs have caffeine in them, which can cause some rebound? What about Stadol, which can do major rebounds? Were they all on the same opiates and same dose? And does 2 patients who developed daily headaches when using daily opiates mean ANYTHING in the scheme of things? TWO PATIENTS? Having been suffering from chronic daily headaches (transformed migraines) for over 20 years–with extended periods without any pain meds at all (not just days or weeks, but months and months and months), and extended periods on limited pain meds, and finally an extended period on long-acting, reasonably high dose opiates, I can say that the times with no opiates were ones where I was suicidal, actually putting the barrel of the gun into my mouth and trying to find reasons not to pull the trigger–and my headaches did not ease up in the least. The past 4 years on long-acting daily opiates have given me the most functional period of the past 20 years of my life. — The Mouse No cute quote; deal with it. AIM ID: JSHMTE ICQ# 9049058
: Daily Opiate Use Among : Migraineurs Increases Risk of : Chronic Daily Headache : : : WESTPORT, CT (Reuters Health) Apr 16 – Migraineurs who : use opiates daily for any reason have an increased risk of : developing chronic daily headache from the : transformation of migraine, according to a report in the : March issue of Headache. : : Dr. W. J. Becker and colleagues, from the University of : Calgary, Alberta, Canada, studied patients who were : taking codeine or other opiates for control of bowel : motility after undergoing colectomy for ulcerative colitis. : : Women who were at least 1-year postcolectomy were : identified for the study, according to the report. The : investigators sent them questionnaires in order to : determine if they had a history of migraine before : surgery, if they currently had chronic daily headache, : which medications they were currently taking to control : bowel motility, and which medications they were : currently taking for headache. : : Twenty-eight patients met inclusion criteria and returned : completed questionnaires, the researchers report. Of these, : 18 indicated that they took no opiates. Of the 10 opiate : users, 2 indicated that they took only small amounts, and : the remaining 8 patients exceeded the recommended : limits for opiate use in patients with headache. : : Eight patients met the diagnostic criteria for migraine, : according to the team. Two patients with a history of : migraine who used daily opiates beginning after surgery : developed chronic daily headache after surgery. The other : six daily opiate users did not have a history of migraine : and did not develop chronic daily headache. : : "Chronic daily headache occurred only in migraineurs who : overused opiates," Dr. Becker and colleagues point out. : "Patients without a history of migraine did not appear to : be at risk for chronic daily headache even though they : used daily opiates."
Response:
Wow, Mario, where did you find this? It sure is full of B.S., isn’t it?
It’s a journal-published study, easily found on PubMed. It is the same question I’ve been asking about my son in another post here which went largely unanswered. The longer we gave him Percocet, the longer the headache lasted (six days). Switched to oxycontin, the same — longer headache. We haven’t yet determined if my son’s headaches are migraine, as he may have Lyme, but the Lyme doc confirmed that opiate analgesics can extend migraine headaches. We are still trying to sort out a Lyme (meningitis-like) headache from migraines, and he has given us imitrex to try if it occurs again, on top of what we have already tried (amitriptyline, Percocet and oxycontin). If you are not familiar with PubMed, you can find it here: http://www.ncbi.nlm.nih.gov/PubMed/ And by typing in either the PubMedID number, or by typing in migraine opiate bowel, you will come up with this study. Opiate use to control bowel motility may induce chronic daily headache in patients with migraine. Wilkinson SM, Becker WJ, Heine JA. University of Calgary, Alberta, Canada. PMID: 11264692 [PubMed - in process] — Tourette Syndrome – Now What? http://members.home.net/tourettenowwhat
Response:
: : Wow, Mario, where did you find this? It sure is full of B.S., isn’t it? : : It’s a journal-published study, easily found on PubMed. And? It doesn’t make their methodology any less irresponsible. It also says TWO PATIENTS responded that way. TWO. Anyone can produce a study with only two patients that come up with the results they are trying to reach. In this case, only 8 of the patients were diagnosed with migraines out of the 38 in their study? Something like that…whatever it is, it’s not even close to a real sampling necessary to draw results that have any meaning. And which daily opiates? One T-3 a day or a bunch of OxyContin every day? And it doesn’t even begin to answer the question about patients with CDH established already. How can you extend a headache that never really leaves anyway? They said these patients had been diagnosed with migraines and gave no indication of what the patients claimed to be the frequency of their migraines before the introduction of these "daily opiates". It is the same : question I’ve been asking about my son in another post here which went : largely unanswered. The longer we gave him Percocet, the longer the : headache lasted (six days). Switched to oxycontin, the same — longer : headache. If your son doesn’t have CDH, OxyContin wasn’t the right drug. No doctor who knows how to really use that drug would give it to someone who isn’t experiencing daily intractable pain. If your son isn’t in daily pain, he shouldn’t have had such a drug to start with, so that’s not a good sign for your doctor knowing how to prescribe meds for headaches–especially headaches he’s not bothered to get a responsible diagnosis for in the first place. If he is in daily pain, then how could you know if the pain has been extended when it never leaves? If he’s not, he never should have been given OxyContin. We haven’t yet determined if my son’s headaches are migraine, : as he may have Lyme, but the Lyme doc confirmed that opiate analgesics : can extend migraine headaches. A Lyme doc? They aren’t headache specialists or pain management specialists for migraines or any other types of headaches. Why hasn’t your son had a complete neurological workup with a neurologist to determine migraine? I’m probably sounding confrontational, but it’s not you I’m feeling flustered with! It’s the things you are saying this doctor is doing (and most importantly ISN"T doing) for your son. He sounds like someone who hasn’t the faintest idea how to work with migraineurs or any other headache patient, let alone diagnose them. Without things like an MRI, EEG, CAT scan and other standard first-time tests for diagnosing headache types, how can he responsibly make a diagnosis? We are still trying to sort out a Lyme : (meningitis-like) headache from migraines, and he has given us imitrex : to try if it occurs again, on top of what we have already tried : (amitriptyline, Percocet and oxycontin). He should never have Rxed OxyContin in the first place if it’s not CDH, which tells me your doctor knows little about pain management OR migraines. Now he’s trying to diagnose by throwing meds at your son to see if they work? I’m not trying to argue with YOU, but between what you’ve said about this doctor’s methodology and what I’ve seen in this study Mario posted,, I’m feeling that your son is being cheated by his doctor. You cannot rely on an article like this to make a diagnosis either. There is NOTHING in that "study" which proves a thing. I can produce dozens of CDH patients who do not have problems with long-acting opiates, and just as many non-daily migraine patients who respond to opiates just fine without rebound or extending their pain. They’ve produced two patients and not even identified what they felt was over the recommended doses (when there aren’t any) of which daily opiates, when I’m almost betting they are talking about Tylenol #3s based on the little info the article gave. There is a poverty of information in that study. The study is absurd. And since you don’t even know what is causing your son’s headaches yet, you cannot determine if what would apply to migraineurs would apply to your son yet. (but believe me, this article doesn’t apply to ANYONE! Two patients statistically means NOTHING) And no matter how many true studies exist, there will always be someone who doesn’t fit in any study or established treatment. You can pretty much count on that. There were recent papers published in bonafide journals regarding the failure of long-acting opiates for migraineurs. Because the doctors involved are well known in treating migraines, the study got some heavy attention, but what they failed to realize is that they are doctors who treat migraines, and up until they started with the study, they had NO experience in true pain management for CDH, so while they felt they had a legit study, it was ripped apart by those who practice pain management because these headache doctors did not understand how to Rx and titrate long-acting opiates for their patients. They decided upon what they thought was an appropriate dose for the patients and left it at that, unaware that these meds, in order to be effective, need to be individually titrated to the patients’ needs. They set their patients up for failure by not understanding how to prescribe the very meds they were evaluating. They just assumed that it was okay to do it that way, and most doctors agreed because they are also not pain management doctors who have worked extensively with these relatively new medicines. It didnt’ make the study valid just because a bunch of doctors who don’t understand the proper prescribing practices of these drugs agreed with others who didn’t know what they were doing. Sure, oxycodone and morphine have been around for ages, but the "Contins" are new to the past decade–actually less than that–and the "Contins" require more understanding of the process than just writing them like they do Vicodin or Percocet). More pain patients fail because of the doctors’ failure to understand these new meds and how to prescribe them than for any other reason. Just because a study is published somewhere does not make it valid on its face. How long do your son’s headaches last if no pain meds are given? Have you ever found one to go six days without any pain treatment? Quite a few people here can easily go six days without touching a pain pill <shudder. I sure can! I went six entire months without a minute of relief at one point, without touching pain pills, but eventually touching a gun long enough to stick the barrel in my mouth and thankfully realize that I’d rather be alive with pain meds than dead and not use them. Then I went back to pain meds no matter what my then-doctor had to say about it. I’ve now been on them for four straight years and have had more LIFE in these four years than in the previous sixteen years combined. Has your son had a full neurological work-up, rather than throwing meds at him in an attempt to diagnose the headaches? If not, please make that your first item on your agenda! If the Imitrex doesn’t work, it’s not going to be a diagnostic tool for you one way or the other, no matter what your Lyme doctor tells you. Quite a few people with bonafide migraines do not respond to Imitrex. I only respond to one form of Imitrex, the injections. The pills and nasal spray are totally, and completely ineffective for me, like taking baby aspirin, but it doesn’t mean a thing in terms of my diagnosis. So if I were to be given Imitrex pills, I would get virtually no relief and that would be what? An indication to your Lyme doctor that I don’t have migraines? But it would be the wrong way to rule out migraines. Others only respond to the Imitrex pills, or Amerge or Maxalt or not to triptans at all, but they are still migraineurs. Your Lyme doc is failing your son miserably. No responsible doctor would diagnose migraines by trying out various drugs to eliminate possibilities, and getting that diagnosis is not the long drawn out process it sounds like he’s making of it. You’re sitting around waiting for the next headache to see if his Rx is going to give you the diagnosis you need when you don’t need to wait till the next headache to get a real diagnosis from a neurologist! : : If you are not familiar with PubMed, you can find it here: : http://www.ncbi.nlm.nih.gov/PubMed/ : And by typing in either the PubMedID number, or by typing in migraine : opiate bowel, you will come up with this study. This doesn’t make that study any more valid. No responsible doctor or pharmaceutical company would rely on a study like that to determine anything and expect to be taken seriously. I’m familiar with this website. Showing up on that website does NOT validate the study’s results. Do your son a favor and get him to a real neurologist, one who treats headaches, and let him/her do the proper diagnostics to determine the cause of your son’s headaches. It’s highly unlikely your son would be a candidate for opiate therapy like OxyContin anyway, but there are loads of pain meds that work in different ways that your son could benefit from. You haven’t even come close to trying them all. But pain meds are a last resort type of thing in terms of treatment anyway. Getting the diagnosis is the first line of business, and THEN you prescribe the appropriate prophylactic meds or even other types of meds depending on the diagnosis. Some forms of headache respond beautifully to prophylactics, and there is a list as long as your arm of prophylactics for migraines and other types of headaches–and ten, one or none could work for your son, but until you have a true diagnosis, not a guess by elimination based on what Rx’s work, you won’t know what your son needs anyway! Others can be helped
… read more »
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I’m operating with a handicap of sorts at 5:30 a.m., without sleep and without much pain relief, but I’m NOT trying to be mean or offensive….just stumbling around trying to be concerned and feeling like I’ve failed miserably. I hope I haven’t. Mouse
No, Mouse, you are making perfect sense. Per the article, it all comes down to our not having a painful illness that is terminal (they don’t see the suicide factor…ARGH! btw, i just got over another staring at the knives stretch, too…almost a week…called my mom yesterday….got chris home…got my refills….now i’m watching Judge Judy. Yes, guys, i’ve learned to call someone when i get close to dangerously low. Batmum, could you send over those cops again? One of them was really cute!:-) Regarding the doctor hooking the boy on OxyContin so soon….that poor dear is gonna go through the ugliest withdrawl. I’d been in pain since 1984, and i still wasn’t offered MS Contin until ‘97…after i’d been seeing Vicious Lord Raskin for two years and had to go through a bunch more meds & side effects & losing both jobs. Going on a time-release opiate should be a last-resort decision. Look back up at the smiley guy after the word "cute." Looks like a comb-over smiley guy. Deep peace to us all, Lavon
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Yup, Here I totally agree with you, I think one of the biggest mistake of Medical Sciences is that their research tend to generalize results, or to better put it to summarize it in statistics, each person respond differently to a same drug, well let’s give them a brake, maybe if they said "recommended SAFE limits", it could be taken in other context. peace, Mario Treglia Tokyo/JAPAN (The Official Clown of ASHM) – Hide quoted text — Show quoted text – Wow, Mario, where did you find this? It sure is full of B.S., isn’t it? Good gracious…what ARE the "recommended limits for opiate use in patients with headache"? I find that kind of statement to be odd, since I’ve NEVER seen any recommended limits of opiate use for patients with headaches. Besides, wouldn’t there be recommended limits for different kinds of headaches? Migraines? Chronic/transformed migraines? Chronic tension headaches? Clusters? And many people have a combination of headache types. They sure didn’t spell that out. I think this study is a crock. ARE there "recommended limits" that the AMA or some medical establishment truly lists for migraineurs? What about those with CDH who are currently med free? What happens when they get put on pain meds for relief? If they are already med free and they are suffering daily, don’t they have some relief coming from the pain meds? How can you get worse when you’ve already got the daily intense migraines? They didn’t take this kind of thing into account in their study, now did they? They also didn’t make it clear if those 2 patients didn’t already have CDH when they started the study, from my POV. Then they say "Chronic daily headache occurred only in migraineurs who overused opiates" when they show no evidence of anyone "overusing" opaites! They only said these people used "daily opiates," but failed to identify what they were taking or how often they took it. Obviously one T-3 per day (which would definitely qualify as daily opiates here) is way different than 300 mg of OxyContin per day.. Were they pure opiates like MSContin or OxyContin or Duragesic? Or were they meds polluted with Tylenol or ASA, like T-3s and Vicodin? Did the drugs have caffeine in them, which can cause some rebound? What about Stadol, which can do major rebounds? Were they all on the same opiates and same dose? And does 2 patients who developed daily headaches when using daily opiates mean ANYTHING in the scheme of things? TWO PATIENTS? Having been suffering from chronic daily headaches (transformed migraines) for over 20 years–with extended periods without any pain meds at all (not just days or weeks, but months and months and months), and extended periods on limited pain meds, and finally an extended period on long-acting, reasonably high dose opiates, I can say that the times with no opiates were ones where I was suicidal, actually putting the barrel of the gun into my mouth and trying to find reasons not to pull the trigger–and my headaches did not ease up in the least. The past 4 years on long-acting daily opiates have given me the most functional period of the past 20 years of my life. — The Mouse No cute quote; deal with it. AIM ID: JSHMTE ICQ# 9049058 : Daily Opiate Use Among : Migraineurs Increases Risk of : Chronic Daily Headache : : : WESTPORT, CT (Reuters Health) Apr 16 – Migraineurs who : use opiates daily for any reason have an increased risk of : developing chronic daily headache from the : transformation of migraine, according to a report in the : March issue of Headache. : : Dr. W. J. Becker and colleagues, from the University of : Calgary, Alberta, Canada, studied patients who were : taking codeine or other opiates for control of bowel : motility after undergoing colectomy for ulcerative colitis. : : Women who were at least 1-year postcolectomy were : identified for the study, according to the report. The : investigators sent them questionnaires in order to : determine if they had a history of migraine before : surgery, if they currently had chronic daily headache, : which medications they were currently taking to control : bowel motility, and which medications they were : currently taking for headache. : : Twenty-eight patients met inclusion criteria and returned : completed questionnaires, the researchers report. Of these, : 18 indicated that they took no opiates. Of the 10 opiate : users, 2 indicated that they took only small amounts, and : the remaining 8 patients exceeded the recommended : limits for opiate use in patients with headache. : : Eight patients met the diagnostic criteria for migraine, : according to the team. Two patients with a history of : migraine who used daily opiates beginning after surgery : developed chronic daily headache after surgery. The other : six daily opiate users did not have a history of migraine : and did not develop chronic daily headache. : : "Chronic daily headache occurred only in migraineurs who : overused opiates," Dr. Becker and colleagues point out. : "Patients without a history of migraine did not appear to : be at risk for chronic daily headache even though they : used daily opiates."
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Ah Lobin I did because I *care*….. if I didnt I wouldnt have jumped… I read something and I *feel* for that person but to do something I *care*… The smiley looked like a rooster :-) Now where is the blue hand? Seems like lots of people are having a more than usual bad time this season. I am begining to have daily headaches along with the migraines. With the other 2 disease *fairies* that have decided to make me their new home away from home this *taint* a good year.. <sigh Ronnie – Hide quoted text — Show quoted text – I’m operating with a handicap of sorts at 5:30 a.m., without sleep and without much pain relief, but I’m NOT trying to be mean or offensive….just stumbling around trying to be concerned and feeling like I’ve failed miserably. I hope I haven’t. Mouse No, Mouse, you are making perfect sense. Per the article, it all comes down to our not having a painful illness that is terminal (they don’t see the suicide factor…ARGH! btw, i just got over another staring at the knives stretch, too…almost a week…called my mom yesterday….got chris home…got my refills….now i’m watching Judge Judy. Yes, guys, i’ve learned to call someone when i get close to dangerously low. Batmum, could you send over those cops again? One of them was really cute!:-) Regarding the doctor hooking the boy on OxyContin so soon….that poor dear is gonna go through the ugliest withdrawl. I’d been in pain since 1984, and i still wasn’t offered MS Contin until ‘97…after i’d been seeing Vicious Lord Raskin for two years and had to go through a bunch more meds & side effects & losing both jobs. Going on a time-release opiate should be a last-resort decision. Look back up at the smiley guy after the word "cute." Looks like a comb-over smiley guy. Deep peace to us all, Lavon
Response:
- Hide quoted text — Show quoted text – Daily Opiate Use Among Migraineurs Increases Risk of Chronic Daily Headache WESTPORT, CT (Reuters Health) Apr 16 – Migraineurs who use opiates daily for any reason have an increased risk of developing chronic daily headache from the transformation of migraine, according to a report in the March issue of Headache. Dr. W. J. Becker and colleagues, from the University of Calgary, Alberta, Canada, studied patients who were taking codeine or other opiates for control of bowel motility after undergoing colectomy for ulcerative colitis. Women who were at least 1-year postcolectomy were identified for the study, according to the report. The investigators sent them questionnaires in order to determine if they had a history of migraine before surgery, if they currently had chronic daily headache, which medications they were currently taking to control bowel motility, and which medications they were currently taking for headache. Twenty-eight patients met inclusion criteria and returned completed questionnaires, the researchers report. Of these, 18 indicated that they took no opiates. Of the 10 opiate users, 2 indicated that they took only small amounts, and the remaining 8 patients exceeded the recommended limits for opiate use in patients with headache. Eight patients met the diagnostic criteria for migraine, according to the team. Two patients with a history of migraine who used daily opiates beginning after surgery developed chronic daily headache after surgery. The other six daily opiate users did not have a history of migraine and did not develop chronic daily headache. "Chronic daily headache occurred only in migraineurs who overused opiates," Dr. Becker and colleagues point out. "Patients without a history of migraine did not appear to be at risk for chronic daily headache even though they used daily opiates."
Dear Mario, Mouse has a lot of good info.I remember reading in Newsweek that many chronic migraineurs have gone through 25-50 therapies/meds before they find something that works enough for them to give them back some quality of life. It is a miserable journey for most of us, years filled with pain, humiliation, financial woes and increasing distrust and skepticism. You are just starting- and with a Dr. who, from what you have shared,appears to be a neophyte in headache treatment knowledge. Thus, you may want to very seriously research and obtain services from the best headache specialist you can get. Further, Doctors in different disciplines should, as you know, coordinate services. I used to deal with this coordination of services professionally. They rarely share info and discuss a case.This lack of a coordination of services can really hurt patients, including those who suffer from chronic debilitating headaches. Many people in this news group, and perhaps your son, have more than one serious medical problem. This is all the more reason for the services of a headache specialist. They are much more capable, generally speaking, to see the effects of lifestyle and other disease re: headache than vice a versa. As to the article, Thanks- I filed the web site- every little bit of info helps, hopefully, to solve another piece of the puzzle. Good Luck and Many Sympathies, Sue
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Speaking of *wet* ones Joe just let go on the bedroom window again. This design almost makes sense…. :-) Ronnie 
– Hide quoted text — Show quoted text – Ah Lobin I did because I *care*….. if I didnt I wouldnt have jumped… I read something and I *feel* for that person but to do something I *care*… Sweetie, your sending the cops to my door forced my husband to realize that the situation was far beyond his ability to cure it and that immediate attention had to be paid….or chris would be making monthly payments to the local mortuary. Your *care* is still one of the most loving things anyone has ever done for me….ever. It ranks right below chris hauling me into the substance abuse hospital. You both have risked our relationships to save my life. Your crowns in Heaven will be heavy, indeed (without the pain!) Now you’ve got to take care that Joe doesn’t lay a wet one on that crown… silly giggles and painless hugs, Your Lobin
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Ah Lobin I did because I *care*….. if I didnt I wouldnt have jumped… I read something and I *feel* for that person but to do something I *care*…
Sweetie, your sending the cops to my door forced my husband to realize that the situation was far beyond his ability to cure it and that immediate attention had to be paid….or chris would be making monthly payments to the local mortuary. Your *care* is still one of the most loving things anyone has ever done for me….ever. It ranks right below chris hauling me into the substance abuse hospital. You both have risked our relationships to save my life. Your crowns in Heaven will be heavy, indeed (without the pain!) Now you’ve got to take care that Joe doesn’t lay a wet one on that crown… silly giggles and painless hugs, Your Lobin
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- Hide quoted text — Show quoted text – Dear Mario, Mouse has a lot of good info. I’m sure of that! I remember reading in Newsweek that many chronic migraineurs have gone through 25-50 therapies/meds before they find something that works enough for them to give them back some quality of life. Newsweek? Now that is a good source to get info about migraine treatments. (NOT!) It is a miserable journey for most of us, years filled with pain, humiliation, financial woes and increasing distrust and skepticism. Kindly include me in the club, please? You are just starting more than 3 decades of daily pain? I would hardly say that I’m starting, I do however agree that where migraine management info is concerned I’m as much lost as the medical community itself or US ALL MIGRAINEURS, (without exception) and with a Dr. who, from what you have shared,appears to be a neophyte in headache treatment knowledge. Nope, you read one single post, the Doctor who used to treat me wasn’t afraid of using opioids, he was very knowledgeable but he is in the USA now and for a short period of time I was left in the hands of a kid dressed in white, who happened to be arrogant as many neophytes are, but I did write to the list that he lost his job, not sure if because of a complaint me and my wife made to the hospital and I am being treated by another doctor who wants to use morphine but I am the one not allowing him to do so, simply because minor narcotics such as Penthazocine 15 mg work perfectly for me, there is no need to go into something stronger. Thus, you may want to very seriously research and obtain services from the best headache specialist you can get. Saw the movie, bought the T-shirt! Further, Doctors in different disciplines should, as you know, coordinate services. I used to deal with this coordination of services professionally. They rarely share info and discuss a case.This lack of a coordination of services can really hurt patients, including those who suffer from chronic debilitating headaches. Many people in this news group, and perhaps your son, have more than one serious medical problem. Yes, I’ve been doing tests in several different areas, not only Neurology, I am getting all the loosen screws tighten up, coincidentally or not the headaches are diminishing, so as you mentioned, I sometimes have the illusion that since I’m getting fewer headaches with the treatments I’m undergoing, other migraineurs would be happy to hear about it, but there is so much bitterness when a group of people with chronic pain gets together that makes it impossible for two intelligent persons to exchange info. I knew a musician who passed away three years ago, he used to say that he was the perfect example that cocaine didn’t cause addiction because he had used it for 16 years and according to him, he was not addicted to it….. died of an OD……. go figure. The center of the problem is in the term which Mouse used, "GET OUR LIVES BACK", we are humans, we have our professions, and as I said we are entitled to have our fun too, go see a ball game, go out on a date, a get together with old friends and migraine prevents us from doing all these things and on the top of all we have to deal with SOME, (not all) doctors who simply have no idea, therefore no interest in our situation and couldn’t care less. Opioids has always been a sensitive issue in this group, just sent a paper, made no comments, you tell me that I should make some research, well, the way I see it, research is not always based on info that WE WANT TO READ, we do have to go through some unpleasant infuse too that would hurt a treatment that is working for us. Do I make sense? peace and as much headache free days as possible for everybody. Mario. Tokyo/JAPAN (The Official Clown of ASHM)
Dear Mario, I do apologize. I thought you said that you posted in 2 different ways here; as your self and as the father of a child with lyme disease. If you read my post again, you will notice that when I referred to the Research findings, all I said was thanks, every bit of info helps solve a piece of the puzzle. Finally, the article in Newsweek was quoting Dr. Diamond. My post was sent, not to respond to any discussion re: opiate use, but to help a distraught father. I know! Maybe I am suffering from mental confusion which is an aura identifying an oncoming migraine! Sue
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Dear Mario, Mouse has a lot of good info.
I’m sure of that! I remember reading in Newsweek that many chronic migraineurs have gone through 25-50 therapies/meds before they find something that works enough for them to give them back some quality of life.
Newsweek? Now that is a good source to get info about migraine treatments. (NOT!) It is a miserable journey for most of us, years filled with pain, humiliation, financial woes and increasing distrust and skepticism.
Kindly include me in the club, please? You are just starting
more than 3 decades of daily pain? I would hardly say that I’m starting, I do however agree that where migraine management info is concerned I’m as much lost as the medical community itself or US ALL MIGRAINEURS, (without exception) and with a Dr. who, from what you have shared,appears to be a neophyte in headache treatment knowledge.
Nope, you read one single post, the Doctor who used to treat me wasn’t afraid of using opioids, he was very knowledgeable but he is in the USA now and for a short period of time I was left in the hands of a kid dressed in white, who happened to be arrogant as many neophytes are, but I did write to the list that he lost his job, not sure if because of a complaint me and my wife made to the hospital and I am being treated by another doctor who wants to use morphine but I am the one not allowing him to do so, simply because minor narcotics such as Penthazocine 15 mg work perfectly for me, there is no need to go into something stronger. Thus, you may want to very seriously research and obtain services from the best headache specialist you can get.
Saw the movie, bought the T-shirt! Further, Doctors in different disciplines should, as you know, coordinate services. I used to deal with this coordination of services professionally. They rarely share info and discuss a case.This lack of a coordination of services can really hurt patients, including those who suffer from chronic debilitating headaches. Many people in this news group, and perhaps your son, have more than one serious medical problem.
Yes, I’ve been doing tests in several different areas, not only Neurology, I am getting all the loosen screws tighten up, coincidentally or not the headaches are diminishing, so as you mentioned, I sometimes have the illusion that since I’m getting fewer headaches with the treatments I’m undergoing, other migraineurs would be happy to hear about it, but there is so much bitterness when a group of people with chronic pain gets together that makes it impossible for two intelligent persons to exchange info. I knew a musician who passed away three years ago, he used to say that he was the perfect example that cocaine didn’t cause addiction because he had used it for 16 years and according to him, he was not addicted to it….. died of an OD……. go figure. The center of the problem is in the term which Mouse used, "GET OUR LIVES BACK", we are humans, we have our professions, and as I said we are entitled to have our fun too, go see a ball game, go out on a date, a get together with old friends and migraine prevents us from doing all these things and on the top of all we have to deal with SOME, (not all) doctors who simply have no idea, therefore no interest in our situation and couldn’t care less. Opioids has always been a sensitive issue in this group, just sent a paper, made no comments, you tell me that I should make some research, well, the way I see it, research is not always based on info that WE WANT TO READ, we do have to go through some unpleasant infuse too that would hurt a treatment that is working for us. Do I make sense? peace and as much headache free days as possible for everybody. Mario. Tokyo/JAPAN (The Official Clown of ASHM)
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I have pub. alot on long-acting daily opiates……on www.headachedrugs.com they are alot safer than the gen med community believes..Lawrence Robbins M.D. author Headache Help(new edit)
I’m terribly frustrated by my the general medical belief that opiods are bad for migraines. I’ve been going to a pain clinic since February (the first month, they made me stop all medications, despite the fact that stopping all medications for the month of November [when I started seeing the neurologist] only made things worse.) They tried various treatments which did not help, and the main pain doctor finally told me they couldn’t do anything to help me except put me on long-acting daily opiates. I jumped through all the hoops she required, got the psych evaluation (not covered by insurance) saying I’m a low risk for addiction or suicide, then went back last week expecting to start titrating pain relief. Nope. She told me, "I can’t prescribe any opiates BECAUSE YOU HAVE MIGRAINES." I don’t know if she’s lying now, or if she was lying when she told me opiates were the only thing she could do to help me. I’m angry and bitter. Adrian Turtle sidewalk radical
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Dear Mario, I do apologize. Sue
You kidding Sue? No need to apologies, you didn’t do any harm just gave me an advice you sincerely thought was going to help. If you ask me, the reason I disappear from time to time from this group is because we keep getting fewer and fewer members like you who cares and take the time to reply to someone in need. I know two Neuros, both migraineurs, they are really trying hard to find a way to make life easier to us and themselves, I love to see their efforts. no apologies Sue, it is me who needs to thank you. peace, Mario Tokyo/JAPAN
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We are still trying to sort out a Lyme (meningitis-like) headache from migraines, and he has given us imitrex to try if it occurs again
I just thought I’d also add my voice to The Mouse’s about imitrex (and the other triptans) and its value or nonvalue as a diagnostic tool for migraine. If it works, then you definitely have a yes answer for migraine. If it doesn’t, you still don’t know, since plenty of people with migraines do not respond to imitrex & the other triptan-type drugs. Mouse’s migraines respond only to the injection form of imitrex. My worst migraines respond only to the injection form. If I catch it early enough and it happens to be one where my stomach is not upset, sometimes the tablet form will work for me — but only at a dosage of at least 50 mg, and I usually start at 100 mg unless I just don’t have it with me. Most doc’s prescribe 25 mg. In your son’s case, he’s not likely to know when he’s at that very very beginning stage, and I’m guessing the tablets would be useless to him. Since one of the major features of migraine for lots of folks (don’t know about your son) is nausea, most internally swallowed med’s are useless. As for the nasal spray, I find it to be pretty much useless, although I keep it around in case I’m in a situation where I socially just can’t do the injection in front of people and I pray it’ll actually help me this time. Good luck. I know it’s really hard to watch your son suffer. It’s hard enough to deal with pain yourself, and I know how it feels when you wish you could take it on yourself and take it away from him. A very helpless feeling. Rosemary
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I also suffer frequent disabling headaches and am frankly often dismayed by the generic and not terribly helpful advice given by health professionals to those who suffer as much as we do. See, I am also a physician and eventually had to stop working because of the impact of my headaches on my work. I have tried numerous "cold-turkey" drug-free trials lasting from 1-3 weeks to rid myself of headaches and have never been successful. I will grant that often nothing helps much and certainly medicines loose their original effectiveness as we become more tolerant. However, I have the following problems with the rebound headache theory: 1. The research supporting it is weak. At best there are some studies evaluating large groups of migraine sufferers who are all subjected to the same treatment. The gold standard for clinical research is a randomized controlled trial and if someone has info on this type of study on this subject, please inform us. We have known for some time that people respond very strongly to just being in a study (see the Hawthorne effect) and have close support by neurologists might help anyone with their symptoms. 2. I object to any "blame the patient" approach in medicine and the whole idea that we are responsible for our pain because we use medications to control it, represents such an approach. If nothing else, I am reluctant to return to a physician if I think I will be chastised for my actions. I think this approach is pretty unsupportive and unsympathetic especially at a time when other chronic pain patients are finally being taken seriously. Perhaps their pain also increased while taking meds, does that prove the meds caused the pain? 3. I worry that pathology will be missed in the zeal to diagnose "medication misuse" (a term I find especially insulting since if meds help, they are not being misused). 4. Different people have different causes for their headaches. Some very well may have a large or small component of rebound (especially to caffeine). If the strategy works for them, more power to them and their physicians. I’m sure some here will protest that I am wrong. However, practically every website I see dwells on this concept and implies that this diagnosis represents many if not most chronic headache sufferers. The proof is just not there yet and until it is, I maintain that this kind of generalization is unfair, insulting, dismissive, and perhaps even occasionally reckless (in the case of missed diagnoses). My colleagues in medicine are often too fast to jump on bandwagons. If I am wrong, I will acknowledge it and apologize. However, until we know more, I believe those of us who suffer so much deserve more.
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– Hide quoted text — Show quoted text -Opioids has always been a sensitive issue in this group, just sent a paper, made no comments, you tell me that I should make some research, well, the way I see it, research is not always based on info that WE WANT TO READ, we do have to go through some unpleasant infuse too that would hurt a treatment that is working for us. Do I make sense? Yes…But it appears to be a VERY bad study from the beginning…for a number of reasons…How they got the sample of patents…Lack of clear operational definitions of terms…insufficient number of patients and so on. There is also a bigger one…OBJECTIVITY I think the "analgesic rebound" people are almost a "cult"…there is no evidence for it and yet so many physicians accept it. They never really had, and still don’t have ONE GOOD study to prove what they say. To really understand what I am talking about here, it is necessary to read the book on Paradigm Shift (not the title-I can look it up if anyone is interested)), which shows how (even in a "scientific" community), science is used improperly to substantiate "belief", rather than fact, and that "fact" is often subverted to serve "community". Does anyone here have a reference to a large study of rebound using patients with bone injuries…havent seen it myself, but it is said to prove the opposite (no rebound effect) with much larger numbers of patients being given opiates. But I think we need to be scientific and objective so the rebound headache cult doesn’t put one over on us
Thanks— there was also the comment in the original text posted by the sainted Mario… about ‘overuse after surgery’ wasn’t there? I’d like to know what overuse is? Given my 4 major surgeries and kidneystone attacks without surgery, I was always prescribed a reasonable amount of analgesics…so HOW EXACTLY DID I OVERUSE THEM to get the gi*&(*&(*d CDH? The whole flavor of the article is bullshit in my opinion.
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Opioids has always been a sensitive issue in this group, just sent a paper, made no comments, you tell me that I should make some research, well, the way I see it, research is not always based on info that WE WANT TO READ, we do have to go through some unpleasant infuse too that would hurt a treatment that is working for us.
Do I make sense? Yes…But it appears to be a VERY bad study from the beginning…for a number of reasons…How they got the sample of patents…Lack of clear operational definitions of terms…insufficient number of patients and so on. There is also a bigger one…OBJECTIVITY I think the "analgesic rebound" people are almost a "cult"…there is no evidence for it and yet so many physicians accept it. They never really had, and still don’t have ONE GOOD study to prove what they say. To really understand what I am talking about here, it is necessary to read the book on Paradigm Shift (not the title-I can look it up if anyone is interested)), which shows how (even in a "scientific" community), science is used improperly to substantiate "belief", rather than fact, and that "fact" is often subverted to serve "community". Does anyone here have a reference to a large study of rebound using patients with bone injuries…havent seen it myself, but it is said to prove the opposite (no rebound effect) with much larger numbers of patients being given opiates. But I think we need to be scientific and objective so the rebound headache cult doesn’t put one over on us
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Interesting post Tom! My wife is suffering chronic migraines which three years or so ago were mostly just around her monthly cycle. She started having trouble making her 75 fiorinal per month last and her headaches were becoming more intense and frequent. Her Doctor suggested she was in rebound and cut her off. She was unable to work for a month basically and never did show improvement by being without drugs. She changed Doctor, found a guy who allowed her more Fiorinal while he tried to refer her to different specialist. What I noticed was the more she got (fiorinal) the more headaches she seemed to have to treat. What was mostly Menstrual related severe migraine had now gone to more chronic and daily headache. The intensity was not as bad as when she had her period but it was bad enough that she would be unable to function at work if she didn’t have a constant supply of fiorinal. Searching for a better solution, I sought a Doctor who would try her on long acting opiates. She was sent to a detox centre to get off the Fiornal and then tried on Oxycontin, Mscontin and finally, Methadone. All of these substances were ineffective since she was always nauseous and partly spaced out. She also didn’t feel she got good pain relief even with increasing doses. For some reason the Fiorinal and Demerol were the most effective meds for controlling her pain. When nothing was helping, the pain Doctor decided that the old standby "rebound" was to blame and she was again forced to go off all meds. Two months later she was totally homebound and in pain. When she couldn’t take it anymore she went to a clinic and got Demerol shots and meet a Doctor who felt that it was more important to restore her to some level of function than to worry about whether she had rebound or not. He began her on Fiorinal and Demerol injections for breakthrough pain and she was able to go back to work. Just in time as she was in danger of losing her job. My wife was happy to be productive again and to be able to spend time with our daughter. I was pleased also but still not happy that she had to be on Demerol since the injections were building up scar tissue on her hips. The last year has been a struggle in the sense that she has a hard time staying within the limits her Doctor sets as far as quantity of meds she can take. She has to have no more than six fiorinal per day and she’s allowed 20 Demerol. She is running out before her month is up and a few times she has gone back to her Doctor to plead for more. With these meds you can’t just increase the dose as your pain levels fluctuate. That’s why I wanted her to succeed on the opiode meds. So, that’s where we are, in a less than ideal situation but better than having no pain relief at all. Many times I think that she would be better off if she had no pain meds and maybe then she would have far less migraine attacks. The real questions is how much improvement could one guarantee her? If she went from 30 attacks down to say 10 even that would be too many. She’s said to me that she’d rather take pain meds everyday, including Demerol shots, than endure the agony of a full blown migraine. I am totally pain free so how would I know what it is like to go through something like this? I can only see her when she is in agony. If she wants to explore the rebound theory then I guess that will have to be her choice. I can’t make her and I can’t even convince myself that that is the best course. Everyone has to do what works for them. Good luck to all of you. Richard the Hubby – Hide quoted text — Show quoted text – I also suffer frequent disabling headaches and am frankly often dismayed by the generic and not terribly helpful advice given by health professionals to those who suffer as much as we do. See, I am also a physician and eventually had to stop working because of the impact of my headaches on my work. I have tried numerous "cold-turkey" drug-free trials lasting from 1-3 weeks to rid myself of headaches and have never been successful. I will grant that often nothing helps much and certainly medicines loose their original effectiveness as we become more tolerant. However, I have the following problems with the rebound headache theory: 1. The research supporting it is weak. At best there are some studies evaluating large groups of migraine sufferers who are all subjected to the same treatment. The gold standard for clinical research is a randomized controlled trial and if someone has info on this type of study on this subject, please inform us. We have known for some time that people respond very strongly to just being in a study (see the Hawthorne effect) and have close support by neurologists might help anyone with their symptoms. 2. I object to any "blame the patient" approach in medicine and the whole idea that we are responsible for our pain because we use medications to control it, represents such an approach. If nothing else, I am reluctant to return to a physician if I think I will be chastised for my actions. I think this approach is pretty unsupportive and unsympathetic especially at a time when other chronic pain patients are finally being taken seriously. Perhaps their pain also increased while taking meds, does that prove the meds caused the pain? 3. I worry that pathology will be missed in the zeal to diagnose "medication misuse" (a term I find especially insulting since if meds help, they are not being misused). 4. Different people have different causes for their headaches. Some very well may have a large or small component of rebound (especially to caffeine). If the strategy works for them, more power to them and their physicians. I’m sure some here will protest that I am wrong. However, practically every website I see dwells on this concept and implies that this diagnosis represents many if not most chronic headache sufferers. The proof is just not there yet and until it is, I maintain that this kind of generalization is unfair, insulting, dismissive, and perhaps even occasionally reckless (in the case of missed diagnoses). My colleagues in medicine are often too fast to jump on bandwagons. If I am wrong, I will acknowledge it and apologize. However, until we know more, I believe those of us who suffer so much deserve more.
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I use about 15-20 Lortab/Vicodine 7.5 a month for my headaches. I also have a stash of Imitrix and a few other abortives. Is this a lot of meds? When I first started, they knocked me out. I’d have to take them with phenergan to controll the nausea. Now I can take two and still function. Comments? BTW, I do take preventives also. ID The following are not my email address. Don’t send mail there.
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I take 120 codeines a month, Tylenol number 4 which is a full grain each. Sometimes, 1-5 Percodans ( 10mg) a month. I take 48 to 60 Zomigs which is the same as 60 25 mg. Imitrex. Was your question meant to be funny ? Andrew
I use about 15-20 Lortab/Vicodine 7.5 a month for my headaches. I also have a stash of Imitrix and a few other abortives. Is this a lot of meds? When I first started, they knocked me out. I’d have to take them with
phenergan to controll the – Hide quoted text — Show quoted text – nausea. Now I can take two and still function. Comments? BTW, I do take preventives also. ID The following are not my email address. Don’t send mail there.
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Which MS med causes migraines for you if you don’t mind my asking? I am considering taking Rebif but I want to be sure that our insurance will reimburse us as it seems way to expensive if only 30% receive benefit. the only med I am using now for my MS is Tegretol. My migraines are becoming insupportable. Tony
– Hide quoted text — Show quoted text – He began her on Fiorinal and Demerol injections for breakthrough pain and she was able to go back to work. Just in time as she was in danger of losing her job. My wife was happy to be productive again and to be able to spend time with our daughter. I was pleased also but still not happy that she had to be on Demerol since the injections were building up scar tissue on her hips. The last year has been a struggle in the sense that she has a hard time staying within the limits her Doctor sets as far as quantity of meds she can take. She has to have no more than six fiorinal per day and she’s allowed 20 Demerol. She is running out before her month is up and a few times she has gone back to her Doctor to plead for more. Please tell me what her dosage of Demerol is.. in each injection. So she can go and get an injection20x in a month.. I am going through the same negotiations with my PCP over Demerol right now. I am limited to 4 demerol injections per month – at 150mg each shot. I have MS and migraines brought on my one of my meds I take for MS as well as a 15yr history of migraines. thanks for writing back j jkl
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- Hide quoted text — Show quoted text -He began her on Fiorinal and Demerol injections for breakthrough pain and she was able to go back to work. Just in time as she was in danger of losing her job. My wife was happy to be productive again and to be able to spend time with our daughter. I was pleased also but still not happy that she had to be on Demerol since the injections were building up scar tissue on her hips. The last year has been a struggle in the sense that she has a hard time staying within the limits her Doctor sets as far as quantity of meds she can take. She has to have no more than six fiorinal per day and she’s allowed 20 Demerol. She is running out before her month is up and a few times she has gone back to her Doctor to plead for more.
Please tell me what her dosage of Demerol is.. in each injection. So she can go and get an injection20x in a month.. I am going through the same negotiations with my PCP over Demerol right now. I am limited to 4 demerol injections per month – at 150mg each shot. I have MS and migraines brought on my one of my meds I take for MS as well as a 15yr history of migraines. thanks for writing back j jkl
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Wish they worked on my wife. She tried Oxycontin, Mscontin and finally Methadone. Nausea increased with dose tritation and pain relief for some reason was minor. Of course she was comparing how she did with what worked previously, which was Fiorinal and Demerol, which she is back on now. The problem with what she takes now is that she has reached her "limit" so to speak, where she can’t safely take more Fiorinal without risking stomach problems due to the aspirin content and she takes twenty Demerol shots per month. Even this high amount is now barely adequate since she runs out of these meds before the month is finished. She’s supposed to take just six Fiorinal per day, which for the most part she does, until she runs out of Demerol. Hell of a way to live. Don’t think she can go on much longer like this and fully expect her to lose her job and get cut off all pain meds soon. Then it’s back to square one eh? Richard the Hubby – Hide quoted text — Show quoted text – I have pub. alot on long-acting daily opiates……on www.headachedrugs.com they are alot safer than the gen med community believes..Lawrence Robbins M.D. author Headache Help(new edit)
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I have pub. alot on long-acting daily opiates……on www.headachedrugs.com they are alot safer than the gen med community believes..Lawrence Robbins M.D. author Headache Help(new edit)
