Opiate medication is not “fun” when you really need it

I’m quite thankful to report that I really, really like my neurologist, who does indeed have a lot of experience treating migraine (even though I don’t believe I’ve seen her name pop up on any official specialist lists).  Dr. M. is personable, friendly, and very serious when she needs to be. I know her schedule is insanely busy, but she stays with me as I look through my list of questions and make sure we both understand one another. She’s also very willing to work with me on treatment plans, especially when I tell her I want to do as many lifestyle changes, supplements, and vitamins as prophylactic treatment before taking daily prescription meds the way I used to.  I know she may not always agree with me, but she respects my opinion and knows when and when not to push. Anywho—all this is to introduce a topic that came up with us this past year.

A few appointments ago, she was clearly concerned about how my migraines had gotten more frequent.  She added an extra dose of B2 and magnesium to my daily regimen and confirmed that I didn’t want to do any daily prescriptive medications (she was right—my mind hadn’t changed). I did tell her I was concerned about not having any rescue meds in my arsenal, and she wrote a prescription for Tylenol 3. I’m to take it when I am out of triptans and the migraine hasn’t been kept at bay.  It doesn’t make the migraine disappear, of course, but it makes the pain fuzzy around the edges and usually helps me relax and sleep, which helps the attack drift away.

Once I ran into an acquaintance upon leaving the pharmacy.  I was a little tired after a long day and I didn’t think to gently say, “I’m sorry, but I’d rather not tell you what meds I’m on” (or perhaps “It’s none of your business whatsoever!”) when the person asked, “What’re you picking up?” “Oh, some Tylenol 3 for my bad migraine days.” “Oh, badass! That stuff’s supposed to be awesome,” said the acquaintance, who then went into the pharmacy to get whatever he was there for.

I remember getting a similar response from friends when I was prescribed Lortab many years ago when I got a severe corneal abrasion (one of those metal closet hooks to the eye—it was as awful as it sounds).  It was one of my first times getting an opiate prescription for the treatment of pain, and I laughed the comment off—I knew these drugs had a reputation.

As I’ve gotten older, though, and seen that many people who can benefit from treatment with painkillers are not getting the drugs that can help due to misplaced public policy concerns, I have gotten less tolerant of these offhand comments.

Because you know what?  Taking opiates or other serious painkillers isn’t fun when you need them, and you don’t look forward to the times you have to take them. When the majority of chronic pain patients hold such a prescription, it’s because they sometimes—if not most of the time—reach a point where they cannot physically or emotionally handle the pain.  When your eye has been poked by a metal hook, Lortab can dull the pain and allow you to sleep, but it never goes away completely. And in no way can the slight fuzziness and disconnection from your healthy self be confused with an addictive high.

Yes, drug addiction is a major problem in the U.S. and around the world. Yes, large numbers of people abuse opiates. But if you know someone with pain who has been prescribed these medications, please refrain from making silly comments about how “fun” it is going to be for them to feel the effects of their pills.  I can assure you that every patient I know would forego all medication, no matter the effects, if he or she could live a pain-free life.

Have any of you felt judged for having a particular prescription? Have you had trouble getting prescriptions you need? Have friends joked about how your medications will get you high?  Please share your stories below. 

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (55)
  • kcddp
    3 years ago

    Thank you, thank you, thank you, for you note. I have migraines as well as other types of body pain. I have had pain varying from minor to extreme and know enough to realize when I need something stronger than a Tylenol.
    It took years before any of my doctors would prescribe medication strong enough, opiate, that would stop the pain. I had already tried NSAIDS and am unable to take them, so that limits what I can take.
    One of my doctors finally prescribed Percocet w APAP. Oh my gosh . I was finally able to function again. When my migraines flared I at least had a respite. When the body pain was so extreme I didn’t think I could move another step, I had medication I could take. As NEEDED. As PRESCRIBED.
    Like you mentioned when others found out the medication that I took they were ready to label me as an addict.
    I am not taking that medication at this time, but it is good to know there is something that will help.
    And as you said, it isn’t a matter of having fun to take or have to take these type of strong pain killers. I hope that the people who think that it is never have to experience excruciating migrain or body pain.

  • Carolwtx
    3 years ago

    Thank you everyone for joining the conversation of what to do about pain medication. I am in your boat. As everyone has mentioned, in one form or another, migraine pain is horrid and so unrelenting. I think we can all agree that when your head is pounding, throbbing, being pierced, etc. we cannot function. I, too, suffer from this disease and am allergic to the triptans which caused a cardiac vasospasm. Opiates, unfortunately for the politicians, are my salvation. Like most non-addicts, or is it all?, I don’t want to take them. The stigma from asking for the script, to picking up the script, to friends comments, to the ER is awful. I’ve had two ERs, not concurrently, say don’t come back as we believe you are an addict. I am under the care of neurologists, pain doctors, neurosurgeons, and more and yet all that is inconsequential to being treated for our disease. I realize that the government, and more importantly the doctors, need to watch and carefully manage medications, whether they are pain, narcotics or opiates. But they must manage them not eliminate them. We need them, not want them, and without them are just as disabled as the person in a wheelchair.

  • Shakaka
    3 years ago

    Unfortunately I live in NH which has recently been named the state with the highest overdose rate in America. Because of this, they have really cracked down on the disbursement of opiates for migraines. I have been a migraine sufferer dice I was a teenager and now at 47, they are so debilitating, I miss an average of 5 or more days of work a month, have no quality of life and literally pass out from the pain on a weekly basis. I see two neurologists, one local and one in Boston and neither will dispense Percocet or any other narcotic as the law states they will have to monitor this so rigorously that they don’t want to do so. I take omitted, Botox injections, Accupuncture, I have a Cefaly device and have tried almost every concoction known to man and the percocets were the only thing that kept me out of the we. Not that they didn’t treat you like a drug seeker anyway even when I went in there with my opiates they would make me wait 6 hours and then only give me toradol and Benadryl. It is a joke. Unless the physicians have ever experienced a migraine or had someone in their family has, I find them heartless. If I had back pain I would be given something for the pain but when your head is exploding they want to give you a high potency aleve tablet. Like I haven’t tried that.

  • ggraybill
    3 years ago

    I take Norco at the lowest dose possible for pain. All over body pain and especially for the migraine hangover that can last for a couple days after the headache is over. I feel judged and like a criminal when I get my pills refilled. It’s very stressful. And every time I go for refills, I’m so scared that my dr won’t refill them. I’m going to my doctor on Monday for a refill. I’m so nervous that he won’t refill because of the new guidelines. But in the past 30 yrs I have tried everything. Imitrex as an abortive works fairly well, but the side effects are sometimes worse than just riding out the pain. And I don’t like taking it during the day if I’m working because it makes me so tired and foggy. And I groom dogs for a living so I need to be at my best. It’s extremely frustrating that the government is grouping this whole narcotics problem into one thing and not taking into account those of us that really need it. They also said that the guidelines didn’t apply to those with cancer and/or in palliative care. I understand that those people probably do have severe pain, but so do those of us with migraines. They aren’t in our bodies and can’t possibly understand the pain that we deal with and I’m sure that a lot of us have the same amount of pain as those with cancer do. It shouldn’t be for the government to decide. Like I said, it’s just not fair that they are grouping us all together. So frustrating.

  • Judy
    3 years ago

    Recently, I started on an opiate to manage my daily pain. I like most of you have run out of options. For the last thirty years I have tried EVERYTHING and gone to multiple specialists before finding the right combination of family practice ( who would care for me when my neurologist was not around) and neuro. care. From vitamins to prescription pills( too many to name), to ointments, oils, injections, nerve blocks, Botox, and don’t forget the Cefaly. I am holding on to a job by a thin thread. All of the triggers named above, are similar, I teach and it gets very difficult when stress becomes who you are because the children are loud, they are sometimes smelly, and breakfast in the classroom is waffle sticks and maple syrup ( ugh

  • ggraybill
    3 years ago

    You have my sympathy. I totally understand.

  • Juneleaves
    3 years ago

    I heard about these new “guidelines” on the radio Tuesday. Ugh. It certainly makes me nervous.

    I have been getting 30 Fioricet a month for the past 3 years. It’s been a lifesaver. I also have a headache protocol on file at the ER which has helped immensely with being treated poorly.
    Years ago I had a doctor and nurse flat out become abusive to which I eventually received a carefully worded apology/not apology from the hospital. I know that so many of us have those stories. A nurse I know told me that most of the actual drug seekers come in complaining of migraine when in reality the are most likely in withdrawals. She said they always cause a major scene.

    Between 2006 and 2010 I was on pain management, taking large quantities of prescribed opiates. The strong stuff! I hate to say it, but being on this regimen, while at first improving my quality of life, ended up eroding my friendships, triggering severe mania, most definitely increasing bodily pain and causing me to leave a job I loved.
    I unbelievably managed to taper off the heavy duty stuff over about a year and a half. Those were probably the worst years of my life (with the exception of 2006-2007)

    After a few years of suffering I went back to a very modest dose of Fioricet. And I n all honesty I consider Fioricet on the low end of painkillers, but nonetheless it is controlled, I’ve been told this is due primarily for the barbiturate.

    Incidentally I’ve also discovered that some of the generics (with the exception of Watson and the name brand) do cause a nasty hangover/rebound headache. And the reserve dilaudid I get as part of my protocol at the ER is exactly that, reserve.

    It’s truly a sad state of affairs that pill mills and the overall psychic depression of our country has turned an entire sub-set of our population to opiates in order to check out of life and abuse the system.

    While I’m glad I no longer am chained to heavy duty pain management, Fioricet has improved my ability to manage my headaches and improved my overall quality of life.

    I wonder what it would entail to start a petition? Anyone know?

  • ggraybill
    3 years ago

    I would sign a petition.

  • Colleen Meegan
    3 years ago

    PS: I also live in the Nazi State of Florida where Republicans have made it so difficult to obtain narcotics for real pain (again, the meth addict comparison), that pain patients suffer immeasurably!

  • Colleen Meegan
    3 years ago

    Good article & spot-on! Too bad the federal government (ie, the Senate Bill that just passed) doesn’t have a clue about how pain patients are not meth addicts!

  • Crystalrz4
    3 years ago

    I’m OFFICIALLY VERY WORRIED NOW! I too have Chronic Daily and Hemiplegic Migraines. I also have other chronic medical conditions that I deal with in which I have to be very careful of what medications I can and can’t take. There are no Preventative migraine medicines that I can take, only Rescues.
    I’m on two of them, one opiate and one very mild narcotic. Of course, these do not prevent my migraines, just help me get through the very worst parts of them.
    Now, I’m absolutely frightened! With this new “LAW” regarding opiates, “No more than three to seven days worth,” what am I going to do? I haven’t been to the E.R. for migraines, in close to 15yrs and I don’t want to go back to that. It took quiet a few years for my Neurologist to come up with a combination of medicines that worked.
    I know there are others like me as well. What are we going to do if we can’t get the medicines we need when we need them? I’m in tears as I’m writing this.
    Does anyone have any ideas? Is there any recourse for us?

  • rebecca
    3 years ago

    The new guidelines are nonbinding. They’re designed for primary care doctors, not pain specialists, but there is no penalty for not following them. They are suggested guidelines, *not* laws. If your neurologist is willing to prescribe now, you might have another hoop or two to jump through but with luck you’ll still get your meds.

  • Meaghan Coneys moderator
    3 years ago

    Hi Crystalrz4 – thank you for your comment. We hear you here at Migraine.com! We understand your concern and are happy you are sharing it with us. I felt this article would be helpful as towards the end it suggests speaking with your doctor regarding your concerns along with advocating for yourself – https://migraine.com/blog/the-confusion-about-codeineopioids-and-migraine/. I hope you find this helpful and I hope other members provide additional suggestions as well. Wishing you all the best today. Warmly, Meaghan (Migraine.com Team)

  • amityville
    3 years ago

    Hello All Migraine Folks;
    I too am a Migraine person, and I take Opiates, not by choice but it seems that this is the only medication that works for me. I have tried well over 15 different medications to no luck, and got to the opiates and they seemed to work. But now my Insurance that I had it got to where I had to get prior authorizations just to get the medication, It was because a lot of people were abusing the medication. I am not one of those people who abuse the medication. I take it for the sole reason of having Migraines, and that is it. I have Migraines daily and they at times are pretty bad. Light and sound are some of my triggers, and also anyone who wears loud smelling perfume, and if I am in a restaurant I will have to get up and move in order to get away from the person or persons wearing the perfume. and also way back when I would have to go to the E.R. for my Migraines, and I know a lot of us has gone through this- – – we were treated as “Drug Seekers” well one night when I was up there this Triage nurse was treating me like this, and so I was in one of my don’t mess with me moods cause she done said that my Migraines was not a Medical Emergency! that started it, and it went from there, and well in the end I got the upper hand, I called back up there Monday Morning and asked to speak to the Head ER Nurse, and she got on the phone with me and told her what this lady had done a night or two back, and she said that she has been getting a lot of complaints against her, and she told me don’t worry she will deal with her, and don’t you know the next time I went in there this lady had been fired!! so basically now if and when I have to go up there nobody will mess with me, they will basically throw out the red carpet for me, and they know not to say anything out of the way. I do not play when it comes to my medical care.

  • kateymac
    3 years ago

    Wow,1ffn5s1 !!!!
    Kudus to you, and THANK YOU, for standing up to poor migraine treatment! I should call it abuse, really. This illness leaves us powerless enough without people like that just randomly snatching away treatment options out of what seems like ignorance topped with a heady dose of meanness. I don’t think people understand the PAIN PAIN PAIN we deal with. Sometimes when people suggest I meditate, I say “yeah? YOU try meditating with a sharp stick in your eye.” It is impossible (..at least for me, so far…). If they even looked at migraine art, they might see it better, because those depictions are beyond words. I don’t know. (Just google “migraine art” – amazing!)

    Well, I’m digressing. Sorry. – I’m just impressed and glad you stood up! I feel like you stood up for me and for all of us who share this illness with you.

  • rebecca
    3 years ago

    I can’t take preventive meds (I’ve tried and failed), and triptans are incredibly unreliable for me, so I try to avoid them. Which means my options are limited to opiates.

    It took me five years and four doctors to find a pain specialist who works with me, and I’m paying through the nose for him because my insurance dropped his clinic from their network. It ain’t cheap but I don’t have any other options because I really don’t want to find a new doctor.

    The head rush is sometimes fun, but mostly it’s the relief from pain that gets me. I have a monthly scrip for oxycodone, and I live in fear of not being able to get that scrip anymore. I live in a state that enacted some really tough laws around opiates, and it’s made my life way more difficult. The pain contract I have to sign to get my scrip treats me with the attitude that if I’m not an addict yet, I probably will be at some point. I find it humiliating and frustrating, but I need the oxycodone, so what else can I do?

  • rebecca
    3 years ago

    My pain doctor required me to see a pain psychologist for a few sessions to learn biofeedback, and it has been somewhat helpful. I’m also bipolar type 2, so I deal with anxiety all the time. I just tend to be more anxious about my meds because I don’t know what I’d do if I couldn’t get them. Some of that is likely due to the bipolar amplifying my normal worries, but some of it is legit. I end up in the ER semi-regularly when the migraines get too terrible, and it always feels like a crapshoot as to if they’ll treat me or not.

  • Meaghan Coneys moderator
    3 years ago

    Hi Rebecca – thank you for sharing your experience with us. And thank you for being so honest. Your experience helps others, as it sheds light on the difficulty you are experiencing regularly to obtain medication which gives you some reprieve from your migraine symptoms. I know there are other people in the community who relate to you. Just the identification can be helpful. So thank you. You did mention experiencing some fear (perhaps anxiety) about filling your prescription monthly. I thought you would maybe find the following articles helpful – https://migraine.com/blog/relaxation-mindfulness-for-migraine-patients-living-with-depression-anxiety/, https://migraine.com/blog/feeling-stressed-anxious-hopeless-thoughts-drive-emotions/, https://migraine.com/blog/coping-skills-save-the-judgement-what-matters-is-finding-what-works-for-you/, https://migraine.com/blog/aromatherapy-for-migraines/, https://migraine.com/blog/migraine-and-mindfulness-bruce-almighty/. They provide coping techniques for managing (and soothing) fear or anxiety. I hope you find them helpful. Please continue to reach out when needed. We love hearing from you. Wishing you all the best. Warmly, Meaghan (Migraine.com Team)

  • ACSlater
    3 years ago

    I live in West Virginia. Had a great Neurologist who had my pain under control and was very knowledgeable and kind. I was on pain meds, triptans,and topirimate. The WV Board of Medicine suspended his license for three years. Now I am here with no relief in sight. Every doctor that I have been to since laughs me out of the office when I mention pain medication.
    Any thoughts?

  • Joanna Bodner moderator
    3 years ago

    Hi ACSlater,

    I am so terribly sorry to hear that you are experiencing such terrible pain and especially that you are struggling to find the proper treatment and doctor for YOU! This is certainly frustrating. Have you considered seeing a true headache specialist? You may want to consider finding an expert who specializes in migraine and headache disorders. These doctors are different from general neurologists (who may claim to be a headache expert but truly aren’t) because they are board certified in headache medicine. Neurologists may be fine doctors but have a hard time being experts in one area because they treat so many different conditions. Migraine and headache experts treat one disease all day, every day – migraine and headache. Here is information on how these doctors are so different and how to find one: https://migraine.com/blog/how-are-migraine-specialists-different/ and https://migraine.com/blog/the-mrf-directory-of-headache-and-migraine-specialists/. I truly hope you find some of this information helpful, but please do be sure to let us know if we might be able to help you any further.
    Warmly,
    Joanna (Migraine.com Team)

  • cal2
    3 years ago

    I’m reading many posts and stories today trying to feel less isolated and judged after a friend of 35 years hurled accusations and questions out of “concern”. I thought the accusations of doctors, pharmacists and ER personnel hurt!!! I can’t describe the feeling hearing it from someone who has watched me struggle for 8 years and who I’ve told all I know about Chronic Migraine and the treatments I’ve tried that failed. My pain is 8 to 10 most days and I became chronic when I didn’t have pain medication. Sites say pain meds cause chronic so I must be lying. I do everything suggested from 3 to 7 days off etc. The # of days changes per doctor, website and book. So, yes, I feel judged because I’ve been denied treatment in ERs, was accused by a yelling pharmacist who drew a crowd of 10 or so shoppers and listen to 2 physicians who do not treat migraine but comment sarcastically about there being no need for pain meds because I have Botox injections. I pay out of pocket for them and I don’t even think they help but I’ll do anything just in case it’s just by 1%. I’m so sorry reading the suffering so many of you go through but I come here to put my pieces back together. Other than talking to my headache specialist who prescribes the pain meds and watches me closely, you’re the only people who help me apply the glue. I was grateful and relieved when my doctor prescribed the pain meds but felt shame. As he explained, there’s a huge problem with misuse and improper prescribing of opiates and it worries and angers him but opiates were intended to treat pain when all other treatments have failed and the patient has no quality of life. The first time he said it, I cried. Not only had my previous neurologist refused to prescribe ANY pain medication, after every med and treatment that should have helped didn’t, she dismissed me as a patient accusing me of lying about being in pain. What a journey this is! Thank you for being here!

  • Ellen H
    3 years ago

    I wish you lived in my city, because I would send you to my migraine neurologist who actually offers to write a prescription for opiates. He considers it part of my regular migraine medications. I see him every three months so he can monitor me and the opiates and the Temazepam and cyclobenzaprine which are not migraine medications but those three meds seem to be the only meds that offer me some quality of life. My doctor has a new physician’s assistant working with him as an intern. I think that’s what she’s doing. She knows nothing about migraines. Now I am her teacher. I wish you the best. Keep hunting for caring doctors. I cherish the ones I have. Peace. Ellen H.

  • Margaret Collins
    3 years ago

    When pregnant, I had migraines all the time. I was given Vicodin and felt horrible that it was all I could take because it was safe. Now at age 52 I have fibromyalgia. During flare up recently I was given enough Norco 10mg for pain only 2 pulled per day on the prescription. I took 4 perday and went back to the doctor when the pain did not go away after 2 weeks. I got yelled at for not following the directions of the prescription and told I may never be given an opiate for pain again if I came in again after doing this again. Really??? After 6 months of not doing this, and the first time I had a bad flare up I was threatened??? I felt like a druggie at my pain management appointment!

  • Ellen H
    3 years ago

    I’ll make this my last comment and will finish reading the rest of the comments later. But one last thought…..

    When I saw my neurologist/migraine physician several months ago, he took a DNA swab. What we are looking for is what Liver Enzymes I have and do not have. If you are missing certain Liver Enzymes, you cannot metabolize various medications or anything else you put into yourself. If you cannot metabolize a medication, the med builds up in your system and you will experience lousy toxic side effects.

    If you are experiencing miserable side effects, you are possibly missing a specific enzyme. If you are missing a certain enzyme, you will not be able to metabolize certain medications.

    At my next visit, it will be interesting to see what the DNA has to tell us. If anything it will be a reassurance that I am not crazy and making all this stuff up about my migraines and the struggles and the setbacks and the exhaustion and and and …..

    Thanks, I’m signing off now.

  • Ellen H
    3 years ago

    TO: CC
    RE: “how terrible Fioricet is?”

    Fioricet and Fiorinal are loaded with caffeine. That was one of the first migraine meds I took. I didn’t take it long. It made me hyper. I couldn’t sleep. Then the migraines really rolled in. We had to stop it. Now I can’t touch caffeine. A little chocolate once in a while but I have to be careful.

  • jamdr
    3 years ago

    You could ask for Emtec. It is the opiate without the caffeine.

  • Margaret Collins
    3 years ago

    I have been given that too by my ENT for headaches from TMJ. Doctor gave me fiorocett because fioronol is a controlled substance. This was 15 years ago and laws may be different now. It worked great with a muscle relaxant for facial muscle spasms. (Soma) so no more soma is given now for my fibromyalgia either. What a mess…Nothing works for my muscle spasms.

  • CC
    3 years ago

    I cannot bare the judgement, hypocrisy and intolerant arrogance stemming from the medical community’s latest pet project: Medication Overuse Headache. Talk about being judged! I can hardly contain my fury when I’m presented with this diagnosis as 1) It’s a misnomer. 2) It blames the patient for their pain, 3) It is frequently diagnosed despite amorphous definitions of “too much”. First, almost all patients taking narcotics/opiates are on a pain contract agreeing to take only the meds prescribed, exactly as prescribed. So how did that become “over use”? Second, it places the blame for this overuse on the patient, despite, again, the rigid contracts we must comply with in order to stay with the treatment plan or physician who prescribes these medications. Lastly, every patient is different and their reaction to every narcotic is different. The fact that there is no consistent dose at which things move from standard to excess creates two problems: if a single pill may cause MOH how is that overuse? And if there is no consistent basis for diagnosis this becomes the “Because Ducks Fly” diagnosis… Ever have questions lobbed at you that you couldn’t answer so you just said “because I said so” or “because ducks fly”? Yeah, when you reach the end of the physician’s ability to handle your excessively complicated case, instead of graciously owning their failure to improve upon your condition any further, you suddenly have MOH. Because Ducks Fly. And it’s all your fault. It is my opinion that this condition (which I believe does exist, albeit requiring significantly more investigation) should have a name that reflects the actual issue. Pharmaceutical Triggered Migraine. Not my fault, not my doctors. Could be one pill, could be 500. I wish that we could push back on the medical community to change the name of this condition because LABELS DO MATTER! I’m wondering how quickly it would be renamed if patients diagnosed with overuse, on a contract, all suggested that was pretty darn solid ground for malpractice. I took what I was told, now you say it was overuse and the sole cause of my pain. Malpractice, here I come. Or, maybe we could remove the stigma and change it to mean a medication can trigger a migraine. Thanks, I’ll get off my soap box now so we can go do some laundry instead.

  • pblask
    3 years ago

    CC, reading your post made my blood boil because this is exactly what my pain mgmt. doctors have told me. The judging, the blame and the embarrassment had me leaving the office in tears, which I haven’t been back. I do have multiple conditions, Chronic migraine, degenerative disc disease, arthritis and Fibromyalgia. The last appointment with pain mgmt I was told that I had MOH, and therefore they were going to discontinue the meds, immediately! No titrating down, just not giving you medication anymore.
    The government involvement into opioid treatments has made it impossible for the doctors to treat their patients ethically and for patients to be treated with respect. I’ve had a truly gifted pain mgmt doctor close up his practice. Another doctor I know went the other direction and lost his license because he was giving out drugs without following through with treatment. Something needs to be done so that people who truly need opioids are able to get treatment without being shamed.

  • onehsancare
    3 years ago

    I changed neurologists a couple of years ago. I really like Dr. E, but I don’t always get to see him; sometimes I’m scheduled to see a PA. A few visits ago, I was seeing Brittany, and asked for a refill of the opiate I use as rarely as possible as a rescue drug (I get terrible abdominal pain when I do–but it makes a dent in the migraine). She was shocked! Where did I get that prescription?! Not from their office! They don’t believe in opiates for migraines! It must have been from my last neurologist, and I’ve just spread them out to last this long.

    I haven’t had another visit with Dr. E. since. (I slept through my next appointment, and as punishment I had to pay a $25 fine and see the other P.A. for the next visit! Luckily, I liked him a lot more. We spent the visit talking about reducing my Topamax down from 600 mg a day by 12.5 mg per week, so I didn’t get to discuss the rescue med question, but it’s at the top of my list for the next visit.)

  • Ellen H
    3 years ago

    Profile photo of Ellen H Ellen H says:
    March 2, 2016 at 6:33 pm

    Well, I’ll try this again. I hit the wrong key and published a comment before I had finished what I was saying.

    “a refill of the opiate I use as rarely as possible as a rescue drug (I get terrible abdominal pain when I do–but it makes a dent in the migraine).”

    I take an opiate Stadol. It comes in a nasal spray. I have learned the HARD way NOT to inhale the spray. I learned the hard way not to eat or drink anything immediately after taking the spray. WHY?

    Because…. inhaling or swallowing food or drink draws the med straight into your stomach. If too much of the opiate reaches the stomach, I violently throw up in a matter of nanoseconds. If I swallow a lesser amount, I get horrible stomachaches and have to lie down for a few hours until things settle down.

    I also am very good at spraying at the wrong angle and then the whole dose runs down my face. My upper lip tingles for a few minutes, but of course, there isn’t enough left in the nose to help the headache.

    Taking an opiate by nasal spray is better than taking a tablet that you have to swallow, that is, provided the stuff stays in your nose and doesn’t run down the back of your throat or your face.

  • Ellen H
    3 years ago

    “a refill of the opiate I use as rarely as possible as a rescue drug (I get terrible abdominal pain when I do–but it makes a dent in the migraine).”

    I take an opiate, Stadol. It comes in a nasal spray. I have learned the HARD

  • Meaghan Coneys moderator
    3 years ago

    Hi onehsancare – I am sorry to hear you had such a negative experience with your neurologist. However it is great to hear you are forming a positive relationship with the PA, who sounds like he or she really listens to you and is attentive to your needs. So wonderful! Thanks for sharing your experience with us and good luck with your conversation regarding the rescue meds. Keep us posted on how it all goes. Have a lovely day! Warmly, Meaghan (Migraine.com Team)

  • Erin
    3 years ago

    It seems fitting that I read this article today. I had to go to my local hospital for a treatment today. I saw my GP first, so he can put the order of my medications in the computer. Before I left to get the shots he told me that some of the local nurses were having “concerns” about my particular treatment. I’ve had chronic daily headaches and chronic daily migraines for about 14 yrs now. Some of their concerns are that I’m able to talk and interact with them, so I must not be in that much pain. And of course, when they have a “migraine” they can’t do anything. So if I don’t act the way that they do, my migraine can’t possibly be bad enough to get injections. None of them ever express these concerns with me. They go behind my back to my Dr. And he keeps having to explain to them that he knows that I would rather go to the grocery store naked, than have to come in and get four injections. I’ve repeatedly had to explain to the few nurses who don’t believe me, that I live with a pain level of a 9 every damn day. I only come in when I can’t stop puking,crying, and hoping to die. I can carry on a conversation with them because I’ve learned to live with the agony. It was either adjust or kill myself. And that is not an exaggeration. I just can’t seem to make them understand. It made me start to sob. I felt even worse when I left than before I went in for the treatment. And opiates are not fun when you really need them. I don’t tell anyone about my medications. Any advice or help with how to approach the nurses who made me feel like less than nothing would be appreciated. I hope no one else was made to feel as horrible today as I was.

  • rebecca
    3 years ago

    I end up in the ER for my migraines on a regular enough basis that I know some of the nurses and registration staff. When my migraines get that terrible, the ONLY thing I’ve found that works is IV dilaudid, IV Zofran, and a bag of fluids.

    But every time I go to the ER I get a lecture about the amount of opiates I take and how according to state guidelines they’re not supposed to treat me for an acute increase in chronic pain. So I end up sitting there in the room with my sunglasses on, the lights off, trying not to cry as the doctor explains how he’s concerned that I end up in the ER often and I really should be working with my doctors to find better solutions and it’s awful.

    You’re not alone.

  • Ellen H
    3 years ago

    “that I live with a pain level of a 9 every damn day. I only come in when I can’t stop puking, crying, and hoping to die. I can carry on a conversation with them because I’ve learned to live with the agony. It was either adjust or kill myself.”

    It’s the “hoping to die” part that rings home for me. I have reached a point that “adjusting” is becoming more and more difficult. I used to see a therapist, but I got angry and walked out a long time ago. Maybe I need to go back. I just want someone to talk to.

  • Joanna Bodner moderator
    3 years ago

    Hi Ellen H. – Thank you for taking the time to share your emotional journey with migraine. You are going through a great deal and it takes a lot of courage to speak up and express everything you have and are enduring. You have touched upon so many topics in which members of our community continually mention and relate to. Specifically the last point you mentioned, “adjusting”, I thought I would share an article from another fellow migraineur. While her story (emotionally) may be more extreme than yours, nonetheless, you might find it hopefully both encouraging and insightful for suggestions on ways to cope and “adjust”: https://migraine.com/blog/breaking-through-the-darkness/. Also, as we do with all our community members, we encourage them to get the support they deserve. Not only medical professionals or therapists as you have already done (big kudos to you!!), but support groups, counselors, etc. Many in our community find it extremely valuable and it’s wonderful to hear that you already took the steps to do so in the past. We would love for you to read more about this here: https://migraine.com/blog/top-places-to-find-support/ and https://migraine.com/getting-help/. Lastly, the one final article I wanted to share, was regarding your mention of “I lose days, weeks, months, and I don’t know where they go” https://migraine.com/blog/losing-days-months-years/. You are certainly not alone with this sentiment!

    We again truly appreciate you being part of our community and sharing such helpful information.

    Warmly,
    Joanna (Migraine.com Team)

  • Ellen H
    3 years ago

    “…it’s because they sometimes—if not most of the time—reach a point where they cannot physically or emotionally handle the pain. (Opiates) can dull the pain and allow you to sleep, but it never goes away completely. And in no way can the slight fuzziness and disconnection from your healthy self be confused with an addictive high.”

    I have to say that I needed to hear/read this quote above from the article. My head has been shrieking for days or weeks. I’ve lost track of time. There are so many things I need to accomplish and I simply just can’t do it. In two days, I get to pick up my monthly script for Stadol; it is an opiate. It doesn’t stop the pain, but I can relax a little and sleep in three hour stretches. After a couple of days, it helps the pain even less. And then there is the “come down” part when I have emptied the little spray bottle and I am on my own for another 21 days until I can refill the med.

    I need to say this to someone, so I will say it here: “I am so tired of living with unending & relentless pain. I lose days, weeks, months, and I don’t know where they go. I need to say that to someone. I am so tired.” Thank you.

  • Erin
    3 years ago

    Thank you to everyone. I had to get a treatment yesterday. And amazingly, I ended up with my two favorite nurses. They always treat me with respect and caring. I wish they worked a reward more days than they do. Here’s wishing everyone is having a good migraine day. Thanks again for the replies.

  • CC
    3 years ago

    Oh Erin!!! I so feel your pain (very, very literally)!! I was in a similar situation and finally had to decide between my pain and sanity or dealing with the “Wow, when I have a migraine I can’t do anything. Yours must not be as bad” hypocrites who haven’t had a migraine for 6 hours let alone 10+ years, day in, day out. I left my no-narcotics-neurologist for a neuropain specialist and he saved my life. It’s a branch of pain management that deals with how chemicals in your brain work against pain and he knew more about how to make my life somewhat livable (I have 4-6hrs a day where I can somewhat function as opposed to 24 in bed with a 9-10) so I would highly recommend that. I’m finding that neurologist really run out of suggestions when you can’t be cured by a triptan and already have every migraine device on the market – – altho the Cefaly is moderately helpful if you haven’t already tried it). Best of luck and I’ll keep you in my prayers!! Hang in there 🙂

  • Joanna Bodner moderator
    3 years ago

    Erin, We are so sorry to hear of your situation which occurred at your local hospital yesterday. Here is an article which relates to your experience as she shares her encounter as being viewed as a “suspicious character” ….and too wonders what she truly could and should have said! https://migraine.com/blog/treated-like-a-suspicious-character-or-drug-seeker-at-the-pharmacy/. You will notice that there are numerous member comments at the conclusion as well who also share their stories. I truly hope this helps to put your mind at ease and to never feel ashamed of advocating for the proper treatment for YOU!! You are certainly not alone in dealing with this stigma and thank you for being part of our community and sharing your story. Hoping you are experiencing some relief today. Take care, Joanna (Migraine.com Team)

  • Jeanne Fuller
    3 years ago

    I’m so sorry that you are going through this. I can’t think of much advice beyond what you’re doing (having your doctor call the ER ahead of time, and having him/her directly involved in your emergency treatment). My advice re the nurses is to ignore them. Nothing you say will convince them that their attitudes are dead wrong; it will just end up making you more angry & painful. As long as your doctor supports you and you can get the treatment you need, concentrating your efforts on their smallmindedness will just frustrate you. I’ve been there–it seems that many of us have. Hang in there!

  • zippy36
    3 years ago

    This article certainly hit home with me. I recently went to the pharmacy to pick up my fioricet and was told that I needed to get a new paper script? So I did that. My doctor has decided that she wants to give me half the amount of fioricet than they have been prescribing for me for the past 10 years. The amount I receive has worked perfectly for me as I do not ever abuse them!! Her thought is that she wants me to take a daily medication. I have tried different medications and have never had any luck with any of them. I get side effects and I still get migraines. I understand the problem that doctors are being pressured to reduce opiate prescriptions but now like one of the other sufferers who commented I will be forced to decide if I think I need to “really” take my fioricet or not. I did have the luxury of taking one pill when I felt the tightness in the back of my neck and knocking the migraine away at the first sign. Thank you for your site. It makes me know I am not alone. Thanks for leaving me vent.

  • CC
    3 years ago

    Do you get speeches from your docs about how terrible Fioricet is? It’s one of the only medicines that has ever helped me but suddenly a few years back they decided it caused more rebound headaches than any other medicine so they wanted me to stop. I wonder if you have heard anything like that? JMHO, if you trust/respect your doctor, tell them no, you want the full amount you’ve been getting. I’ve found that my doctors will relent if I push back unless they are forcing everyone to cut back for legal reasons (from governmental regulations). Good luck!!

  • Joanna Bodner moderator
    3 years ago

    Thanks for sharing your experience and we understand just how frustrating it must be. Making any adjustment to a treatment regimen is stressful, but especially when you mention it has been working well for you, must be difficult. We truly hope the change in your script will be not cause any major disturbance and that your pain will be managed. Thank you for being part of our community and again for sharing your comment. Keep us posted on how things go. Best, Joanna (Migraine.com Team)

  • zippy36
    3 years ago

    For the record you are correct. Taking the medication is NOT FUN!

  • mammapeaches (Susan McManus)
    3 years ago

    My mom thinks I should “suck up” the pain, but Both my neurologist and primary care doctor are fine with me trying a Percocet at the onset of pain to see if it will work before using a coveted triptan. Also, I like that the Percocet does not stay in my system as long as a triptan and I have no side effects like I do with triptans. However, the amounts of opioids that we can receive is SO restricted that many months I am playing the stupid game of “is this headache bad enough to take a Percocet?” Then, the pain gets ahead of me and goes full blown migraine. If we could just take meds as we need them it would remove a lot of stress and I feel remove a trigger. Panicking about not having enough meds does not help a migraine brain!

  • Jeanne Fuller
    3 years ago

    Exactly! Why does someone get to decide whether or not we “deserve” to have our pain treated? Are we not long past the point when migraine was through to be a psychological condition of “hysterical” women? I work at a hospital, and I am shocked & dismayed that so many otherwise educated doctors/surgeons, etc still look upon migraine somewhat suspiciously, as if it may not actually be a physiological disease. In addition, I am dumbfounded by most medical professionals’ failure to understand the nature of pain. Even with the CA Medical Board’s requirements that doctors take some sort of pain management continuing education to maintain their licensure, I still find that most doctors don’t really understand how to treat pain.
    Thanks for your support! You hang in there:-)

  • Jeanne Fuller
    3 years ago

    I have been on long-term opiate therapy (along with triptans, prescription prophylactics & multiple supplements) for my chronic migraines w/aura and occasional cluster headaches for almost 13 years. My current neurologist & I (along with 4 prior neurologists, my 25-year PCP, and an HMO-mandated psychiatrist) have tried EVERYTHING else. Literally, I challenge anyone to name a prescription drug (either abortive, prophylactic or rescue), lifestlye change, exercise routine, alternative therapy, piercing, or flat-out nutso, last-ditch, “my-cousin-heard-of-someone-who-tried-this,” treatment that I haven’t tried. Other than brain surgery, I don’t think there IS anything I haven’t tried–and don’t think I haven’t begged my various insurance companies over the years to try that, too. If I sound defensive, it’s because I am. I always feel that I have to justify my decision to “cave” and go on opiat therapy. After multiple stints of short-term-disability; months in which I did nothing but go to work & lie on my couch with my head wrapped in ice, trying not to cry from the pain (crying makes it worse, as you all know); trials of “Dopamax” that almost cost me my job; and my boss telling me that I should probably save everybody the trouble & just go on long-term disability (at 28); I asked my neurologist if I could try an opioid therapy that is normally reserved for cancer patients. He agreed, and it changed my life. Now I can work with minimal days off (still more than the average worker, but that’s a story for another time), exercise, and do some things that normal people do. Perhaps most importantly, I don’t contemplate/plan suicide on a regular basis. My life is not normal by almost anyone’s standards, but I’ll take it. I don’t walk around stoned out of my mind. I am never “buzzed” or high. I am still on the same dose of opiates that I started on 13 years ago. Nobody that doesn’t know (and only a few people do) would know. I am not popping pills constantly, fearing that I will kill my liver with Tylenol or OD, because I am chasing the pain. I am living a life as close to normal as I have known since the chronic migraines completely took over my life at 25. However–I am regularly treated like a junkie at the pharmacy. I was denied pain medicine when I presented at an ER with a perforated colon, because I “was already on plenty.” My car insurance company settled a nuisance car accident claim made by a known con artist, causing my premium to skyrocket, because of the medication I was on. Even those who do know tend to attribute my migraine-related aphasia & hangover fog to my “drug use.” I live in fear that my neurologist will retire, and I won’t be able to find someone else who believes that I deserve to have my pain treated, or that the FDA/DEA will disallow this medication for non-cancer patients. No, opiate medication is most-definitely NOT fun when you need it.

  • hoochie824
    3 years ago

    I completely agree with everything you said and have gone thru alot of these exact things myself. I think its absolutely disgusting that we have to be penalized because other people have problems abusing these medications. I could get all the marijuana I wanted now,if that would work. Which I think is a joke! But god forbid you actually continue to get the medications that help you a little bit without being looked at like a drug addict. And going to the ER is completely out of the question with the wau they treat you! You cant go in there for a migraine cuz all they see is someone looking for drugs! Such a sad place we have come to. It’s almost impossible to find any help or support from any “medical professional”.

  • Joanna Bodner moderator
    3 years ago

    Thank you greatly for joining in on this conversation. This can be a very sensitive treatment topic to discuss for many and by sharing your comment helps to bring much support to those who are also struggle with this. Thank you for being part of our community. Best regards, Joanna (Migraine.com Team)

  • mammapeaches (Susan McManus)
    3 years ago

    Feeling your pain! Stay your course!

  • Kate
    3 years ago

    Agreed! I have never felt “high” or impaired when taking an opioid pain medication (and I have a good deal of experience with them due to my 10 year constant headache and being on daily opioids for awhile). They cause plenty of side effects and I really don’t like taking them, but they are the only thing to consistently significantly help.

    Most folks taking an appropriate dose of an opioid for legitimate pain don’t get any recreational value from them. There is also a big misconception that patients on opioid pain medication for chronic pain don’t need a pain med (or need a lower dose) for acute pain, when in fact they will need a higher dose (due to their tolerance, and as the baseline medication only works on the baseline pain).

    I purposely have told very few people of the meds I’m on…only my doctors, my husband, and a couple close friends. It can be dangerous actually, opening you to theft (although I keep most of my meds in a safe). Only a slightly larger group even knows the extent of my chronic health problems (somehow I’ve even been able to keep it from work). Best wishes.

  • LisaT 99
    3 years ago

    This is the story I have wanted to write. No, it is NOT fun. We do not enjoy taking these opiates and do not like being judged for it. Most times, they are a last resort for extreme pain when all else has failed. I am sure there are abusers out there, but most people with chronic migraine probably do not fit into this category.

  • kimmie
    3 years ago

    I feel like you are all writing my life story, I have suffered from chronic migraines for most of my life. I was told they were hormones and should get better when I reached a certain age. Due to a life event I had to have a complete hysterectomy. This left me with a permanently damaged back for which after many surgeries and steroids have to take opiates on a daily basis, because of that use they don’t touch my migraines. My neurologist gives me my triptans and I get Botox treatments every three months but when I go to fill my prescriptions I am looked at as if I am a street drug abuser. I would give anything to not have a pain so bad in my head that I wish I had a drill to relieve the pain. But everyone judges you.
    I take a drug test monthly when I go to my pain management Doctor for my check up for my back. But society looks at those of us who suffer daily, mostly alone, quietly without complaining because we have this pounding in our heads. I don’t know what we are suppose to do with only 9 pills a month when we suffer for more than 15 to 18 days out of the month. Migraine sufferers are some of the strongest people there are, we suffer with very few options for relief and because no one actually “sees” that you are sick or injured, they think you just have a headache, if they only knew, they would be more open minded to providing the medication that is needed so we can all live normal lives.

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