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Don’t call me that! Words that irritate

People with migraine always talk about the kinds of things that they hate hearing from other people. Some typical examples include: would you like some Tylenol? Did you drink enough water? You’re probably just stressed!

Words that irritateIt would be great if we could get people to be more sensitive about the sorts of things that they say. But are there also specific words that we wish people stopped using to describe us?

Dr. William Young at the Jefferson Headache Clinic posed this question to a panel of 15 experts, academics, advocates, and patients. (I was a member of this panel.) I’ve written a couple of posts now about our discussions. In this final post, I want to focus on the question: what words should never be used to describe people with migraine?

The panel came up with some different words and phrases that we thought were particularly problematic.

The first set of words includes “sufferer” and “migraine victim.” The reasoning here was that this language makes people with migraine seem weak, when we know that they are anything but.

The next set of words includes “borderline”; “migraine personality” or anything else with a psychiatric connotation.


The panel was also opposed to any language that seemed to blame the patient. For example, it would be incorrect to refer to a patient with medication overuse headache as a “medication overuser” or to talk about a “chronic headache patient.” (In this last example, what would ‘chronic’ refer to: the patient or the headache?
The panel also agreed to avoid the use of “migraine headache” unless one was specifically discussing pain associated with migraine.

Are there words associated with migraine that you would like to see eliminated from regular use?

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

  • zippy36
    5 years ago

    My ex called me a “pill popper”. He also used to tell me that I came from a family of “pill popping women”. Yes, my Mother, 2 of my Aunts, my sisters and my daughters all suffer with migraines. Yes, sometimes we sit and talk about our migraines in ear shot of other people. And finally, yes, we do talk about the treatments and medications that we take or have tried. He believed that I was “brought up to have migraines” okay…because this is what every person wants for their kids!!!

  • Ree Leeds
    5 years ago

    Over a decade of migraines the same people ask me “Haven’t they figured out what causes your migraines, yet?” I calmly reply “If researchers had there would be less migraine suffers, would there? I would be somewhere else right now.”

  • Jodi
    5 years ago

    I am now 38 years old and my father randomly says, “You STILL get migraines? Why do you allow them in your life?!” Drives me crazy. (He is also a New Age holistic healer and is convinced that I “won’t allow” him to heal me. This is because since the onset of my migraines at age 12, his “healings” have never worked.) He thinks Western Medicine is evil and can’t understand why I choose to take the preventative and reactive medications that have changed my life.

  • DinaMay
    5 years ago

    i don’t think words matter as much as all that. what upsets us really is that people don’t understand what we’re going through and don’t seem to care. but often, while the first part may be true (they don’t understand), the second is not. when someone you care about is suffering, you want to help, you want to make it all better. so friends and family give us suggestions that probably helped them, or someone else they know and care about, even though their suggestions make no sense to us or seem mean. my own favorite suggestion was that i put a banana peel on my head to make the migraine go away. it still cracks me up that someone really thought that was going to help. i want to suggest the next time that person drops a piano on their foot, they ease the pain with a banana peel.

    when a doctor says something that gets your goat, it may be helpful to talk about it if you can do so calmly. i asked one of my doctors why he didn’t write “migraine” as the diagnosis on my medical records. turns out, it made a difference in getting my insurance company to pay for the treatment he was prescribing. so he wasn’t trying to annoy me. he was helping me.

  • Megapain
    5 years ago

    I do have to admit that since i have been eating in the Zone, my migraines have decreased. Its just a theory but maybe a trigger was all the processed sugars and lots of pasta i was eating. My blood test before Zone said my tryglicerides were really bad and i was almost diabetic by one point. Since the Zone i have had less migraines and i can fight them alot better now than before the Zone Diet. While they are not completely gone i believe they are now manageable. I want my grandma to try this cuz she has chronic migraine plus other medical conditions like lupus, fibro, and RA, which might be triggers for her.

  • Megapain
    5 years ago

    My father in law whom i love deeply, tells me to drink more water. And the thing is i dont drink enough water so maybe he is right. But every time we are outside in the bright sun for long time i feel one creeping in. I tell him i dont feel good and he says get water. I do think he believes me though cuz his wife does. She will tell me to take something and go sleep in a dark place. And that usually works.

  • Kim
    5 years ago

    My mother always likes to point out that if I had children, my migraines would have gone away. I’m 46 and didn’t have children because I also deal with bipolar II. Didn’t want to pass that on. So how is telling me to get pregnant and it’ll all be better helpful in any way? Ugh.

  • Teresa
    5 years ago

    My mother has migraines to this day, although, they did subside a little after menopause. My older sister is 44, so Mom obviously had migraines way after having children.

  • DinaMay
    5 years ago

    in case it helps, i did have children (2) and i still have migraines. in fact, my migraines were far worse a few years after the kids were on the scene than before.

    i think people just want to believe that there’s a quick and easy fix, even when there isn’t. so they propose some preposterous solution and then if you don’t try their “cure,” they can believe it’s your fault you’re still suffering. it’s a lot tougher to know someone you care about is suffering and there’s nothing in the world you can do to help.

  • Nicci
    5 years ago

    I also didn’t have children for the same reason as you. Thank you for courageously sharing that… I’m glad to know someone else made the same choice. I hope you’re glad you made the choice you did… for me: I’m glad. Very glad. I can’t imagine having children on top of all this. I’m cyclothymic, which is basically like low octane bipolar. It goes unnoticed often and the depressive side is what we remark upon. However, if I’m given an SSRI… uh oh. It seems that Perimenopause is what’s kicking my butt. I didn’t have migraine symptoms until now. 🙁

  • Marilynw
    5 years ago

    We’ve all heard “it’s all in your head , or it’s JUST a headache”.
    It’s not “all in your head” , I don’t mean just literally, migraine upsets your entire body. And if you want a definition or miserable, just think about bending over with a headache and puking your guts up while upside down.
    Migraine can lurk for hours and we often tend to put off dealing with it because it sometimes does not manifest itself.

  • Harriette
    5 years ago

    Here’s one. “Patient has a history of ALLEGED migraine headaches”.

  • Harriette
    5 years ago

    Here’s one. “Patient has a history of ALLEGED migraine headaches”.

  • Teresa
    5 years ago

    If I saw or heard that, there would be a new note that says “patient ‘Allegedly’ punched the doctor in the nose”.

  • Lis M.
    5 years ago

    It would be nice if people would stop telling me, “something must have caused it”…. I get migraines like clockwork, at least three times a month. It’s not stress, it’s not working too much. It’s hormones, weather, and even whether there is a full moon or not. I can eat chocolate and drink wine one day and get no migraine during week 2 of the month, but forget doing that on week one or that’s it. The migraines are an inevitable thing, and it would be awesome if the people who are around me every single day weren’t so surprised every time I get floored with one.

  • Sandy
    5 years ago

    sometimes they happen just because. maybe multiple triggers. i think people have difficulty accepting ambiguity. i hear this all the time: why, there must b a reason. after 17 plus yrs of migraines sometimes the reason is multifaceted or i don’t know especially when no major migraine for 2 months then daily migraine for 3 months that send me for injections weekly.

  • Adiantum
    5 years ago

    Yes! When someone says “something must have caused it”, I sometimes feel that there is subtext behind that smells like “blame the victim”. Something along the lines of “If you figure out what causes it, then you can control not getting them.” Hah. In my dreams!
    Like you, I can drink a beer or a glass of wine one day and experience no migraine, but if the all the mystery elements are aligned, then just a sip of beer will send me on the express train to Migraine Hell.

  • Devin C
    5 years ago

    There aren’t so many words that I would like to see eliminated as much as I would like to see descriptive language used more effectively. I have recently been diagnosed with Sporadic Hemiplegic Migraines and yet every doctor wants to just call them complex migraines which means nothing to the medical community. When I am taken to the hospital (often in a state of paralysis on one or both sides and unable to speak) I need doctors to know what drugs to use and that Triptans normally used are actually dangerous for this rare form of migraine. When ER doctors put complex migraine on my chart rather than Sporadic Hemiplegic Migraine they increased my risk of being given the wrong medication. I don’t mind being called a sufferer as that at least acknowledges that I have problem that isn’t “in my head”. I want my condition to be acknowledged so we can move closer to an effective treatment.

  • kmripple
    5 years ago

    When I was put in hospital for a DHE injection course, my neuro did all the paperwork prior and all I needed to do was go and get admitted. I had a note from the neuro specifying course of action. The floor doctor came to my room and I had to explain to him all the glorious symptoms of migraine (apart from headache), he seemed surprised by all the information I provided him. I really don’t mind educating others about migraine, but it was maddening to have to pay a hospital charge for a doctor who had so little knowledge of what migraine was about, and would have been clueless about what to do for me if I hadn’t had a note from my awesome neuro explaining meds and dosages needed during my hospital stay!

  • Bev Todaro
    5 years ago

    Devin, So glad to see your post. I also have Hemiplegic Migraines. I could have written the same post. It is a rare migraine and some doctors have never seen it. From some of them, I got “It’s all in your head”.Totally discussed. Thank you for posting. It’s nice to know I’m not alone. Steeler fan.

  • AlwaysHope
    5 years ago

    Well I’m going to change my Displayed Name to Never A Chance in a Hell!
    I researched the a Nerve Decompression Surgery and it seems since I have Medicare and Medicare, Medicare won’t tell the Doctors ahead of time if the procedure is covered, you have to pay upfront! Now when you’ve maxed out your credit cards to pay for Drugs such as Imitex, OxyContin etc. How the hell can you afford to pay upfront a huge bundle, not knowing in the end if you are stuck with the entire bill you can’t afford! It seems if you have certain diseases you are covered other not so much! So now doctors can say I’m depressed, I tried everything there is to try but unless I’m rich and can pay cash I am doomed to a life of pain. I don’t want the next 20 years to be like the last 20!

  • DinaMay
    5 years ago

    basically, the rule for medicare payment is that a given treatment needs to be fairly common and generally accepted as a safe and effective treatment. anything that’s the least bit experimental (which means new and not yet common knowledge) is not going to be covered.

    but sometimes if you can find a helpful doctor, he can make a difference. sometimes when a doctor goes to bat for a patient, he can get insurance companies and even occasionally medicare to pay for something that’s kind of borderline — not brand new but still not generally prescribed.

  • AlwaysHope
    5 years ago

    Most Doctors don’t have a clue!

    I love it when doctors think they can diagnose your Migraine problem! – One of diagnosis thrown in the soup they serve up to me & others that is infuriating – DEPRESSION! This is particularly aggravating as:
    I’ve left no stone unturned to solve the genetic chronic Migraine Disease problem and get off all meds as well as always had goals no matter how bad my life was from the disease and emotional abuse in my environment!
    I always try to keep going with a positive attitude! Before these headaches became chronic/daily, I was an avid golfer, photographer, and had a social life. I have tried to continue with these hobbies but fatigue sometimes limits my involvement.

    I would love to have these doctors walk in the shoes that I’ve trudged along in for the past 20+ years and see if they have one iota of the POSITIVE attitude and incentive that I have maintained during these years of pain & suffering. Let them deal with things like:
    – crawling to the bathroom from your bed to throw-up because it is too painful to stand (frequently)!
    – exhaustion because you haven’t slept through the night for 20+ years due to pain or getting up every hour to put frozen water bottles on trigger points to help with pain or prevent a migraine!
    20+ years of migraines every day for most at a pain level of 8-10
    tried every procedure to burn, numb the occipital nerve temporally; tried all the drugs including OxyContin , Imitrex (daily for 4 years) & of course being a woman drugs like Prozac amongst others; holistic treatment including acupuncture; had a disc fusion at c2-c3; meditation; biofeedback; Medtronic’s Nerve Stimulator implanted.

    Currently between searching for new procedures and maintaining a home life as best I can, I am in the process of training 2 Yorkie puppies to be Therapy dogs for those suffering with chronic pain. I can tell you from my experience, my Yorkshire Terriers were my constant support, companionship and elevated my outlook to be able to look towards goals and helping others!

    The doctors see me sometimes at my worst when I’ve had no sleep and intense pain, after dealing with emotional abuse, when I’m exhausted, emotionally drained and have a Migraine, then I hear it “I’m sure you have DEPRESSION!” Not funny to me as I have worked hard at maintaining a positive attitude!

    Wouldn’t be wonderful to have the doctors with limited vision replace us and see after 20+ years of chronic pain along with all of the side effects of Migraines & drugs, be as UPBEAT and tuned into life as most Migraine sufferers!!!!!

  • Buthainita
    5 years ago

    My aunt describes her own migraines as “counting dead people”, which thouh very true, makes me even moe sick when she reffers to my migraines.. mine are just a trip into hell

  • Mitchell
    5 years ago

    Any things out there new that work?No sleep and it just gets worse……..

  • The Migraine Girl moderator
    5 years ago

    Mitchell,

    I’m so sorry you’re having a rough time. Check out this link for a thorough list of treatments. Even if something’s not new, there’s a chance that it’s new to you. Keep your head up.

    Take care,
    Janet G.
    “The Migraine Girl”

  • Madalin
    5 years ago

    I can’t handle it when someone offers me panadol for my “bad headache” and then when I refuse (because clearly this is NOT the medication I need!!!) they assume I am fine. I don’t have a headache dammit!! I never see them taking panadol for loss of vision or compulsive vomiting, why do they think it would work for me? It makes me so mad. I always just have to leave the situation immediately if I feel a bad migraine coming on, because they aren’t always as responsive to my Maxalt as I would like, so I guess some people just go on assuming that I am leaving for a wimpy headache that wasn’t even bothering me enough to take a panadol, as they never see my symptoms progress. It is very frustrating and embarrassing, especially with employers.

  • Penny
    5 years ago

    I lost a job due to my migraines. I was an ASM, and my manager told me that my constant “not feeling well” was bringing morale down at work. No, really. And yes, that was the way he said it. Evidently (to my clod of a manager, anyway) migraine = “not feeling well”. I put in my resignation right after.

  • Teresa
    5 years ago

    I have had migraines since I was about 8, and I am 40 now. They have always been bad, but in the last 10 years, they became chronic (by which I mean nearly every single day), and in the last year, I have been getting severe migraines that last for days. For example, during one such event, I gave myself 6 Sumavel shots, and took about 10 Imitrex pills, but the pain would keep coming back after a hour or two. I had just moved in order to go to a specific college, so at first I chalked it up to the move. Now a year later, I am still having them just as bad. I was not even able to start school, nor am I able to work because when one of those multi-day migraines hits, I am down for the count. I am just lucky enough that my husband gets enough money for his VA disability for us to live on.

  • Sandy
    5 years ago

    Kim, Shea, and Penny, I have had a similar situation. 8 yrs ago, I was under a lot of stress. less than a yr after hurricane Katrina happened. i was planning my wedding. my migraines become weekly. after my wedding my boss become very verbally confrontational accusing me of faking sick with migraines to get out of work. unbelievable. now 8 yrs later feeling compelled to work through them when can, has become chronic daily unable to work.

  • Kim
    5 years ago

    My boss called me ‘unreliable’ – even tho my job was always completed, maybe just not during typical business hours. So now every time I have a truly hideous migraine, I’ll be feverish with ‘unreliable, unreliable..’ echoing in my head. Thanks, ex-boss. Kicked him to the curb but he still hurt me.

  • Shea
    5 years ago

    Penny, I was also told that if I was out sick it brought down morale! He also told me that I set a bad example. I mean, if I can just call in sick, then other would get the idea that they can too!

    I’ve been suffering through them at work as well as I can, but as of next week, my DB boss will be gone! Here’s hoping the next one is more sensitive to a migraineur.

  • Jules2dl
    6 years ago

    Recently, my husband has begun asking me if I am “ill”, when he means do I have a bad migraine. For some reason this just annoys the heck out of me. I’m glad he sees migraine as a disease, but at the same time, the way he says this somehow makes me feel like a hypochondriac.
    Since I haven’t been able to work in almost 3 years, when my chronic daily headache morphed into chronic daily migraine, I’ve been under a lot of such scrutiny from family, friends, and Social Security (who finally granted me disability this past March).

  • Pendragon
    6 years ago

    The one that REALLY gets me is “I get headaches sometimes, I know how you feel.” As if, their occasional headaches somehow compare to the pain I experience on a daily basis. Also, offers of Panadol or a glass of water. They also bother me. The third one was one my (near-ex) wife used to say, “Sometimes I forget you have a headache.” (I’ve always used that term, as there were no other migraine symptoms, just the “I sometimes forget you’re in constant pain” bit)

  • Mindnights
    6 years ago

    Hey, I´m Hana and due to my migraines I am judged .. often. Even my lifetime best friend turned from me saying, that I´m just lazy, I quit work for nothing etc. She told my brother that migraines don´t exist, you know, we all have some headaches sometimes… and so. It hurt me and in some time we don´t see each other anymore. Some people would never understand, how can a huge migraine affect your life with all these light and noise sensitivity, throw-ups, pain, blurred visions etc. And I´m tired of explaining. So I don´t. I just stopped caring about what do others think, say. If they would taste one week with migraine, they would change opinion. But I don´t wish anything bad to anyone. It would be a nicer world to live in, without all those judgements and prejudices.

  • BethAnn5
    6 years ago

    I just finished a paper for one of my classes & I chose “Exercise and Migraines”, one of the things I touched on was the “Stigma of Migraine”.
    We’ve all said something about it being one of millions of “invisible illnesses”, where if the person doesn’t look “deformed” then they’re faking for what ever reason.
    I get **SO** furious with the
    “you don’t look sick”,
    or
    “if you’re so sick then why are you at work/at school” Because dum*ss, I can’t afford to miss!

    “here’ I have some Advil”….excuse me idiot, would you give a Band-Aid to someone who just cut a limb off? I bet you would!

    Or if I’m out of class I get a barrage of texts, I respond with a blanket pre-typed text of “I’m very ill, please do not disturb, I’ll text later”…to which I get dozens more text questions…

    One idiot in one of my classes kept on & on & ON today with
    “Hey, since you’re skipping class you wanna’ get lunch then?”
    “Hey, dive ___, I’ll meet you there!” Etc…

    I finally had to get ugly with her & say
    “you don’t get it, I can’t see, I can’t drive, I’ve thrown up constantly. I’m not skipping class, I AM SICK.”
    She wouldn’t speak to me when I did finally get to class at 1:30.
    Oh well!

    But I do hate that there is such a stigma. If we all had…gaping holes in our heads, then nobody would question our illnesses…sadly, because of the fakers, we pay the price.

  • Beth
    5 years ago

    I totally understand what you all are talking about!! I lost my job a few years ago because I couldn’t concentrate. I was having some medication switched and I had really bad headaches. This past August, after many times in the ER and even admitted to the hospital, I was finally diagnosed with migraines. I wish I had known what was happening back then!! Now I’m going thru the medication shuffle again as they try to figure out how to help me.

  • Cindy McMillan
    6 years ago

    I once had a manager tell me I couldn’t call in to work for “headache”.

  • Teresa
    5 years ago

    “Over the years, and I don’t know if this is true for everyone, but these migraines have gotten worse, the older I get!!! They wear me out, plain and simple!!!”

    Laura, I understand completely. Mine have gotten worse as I aged as well. And after having a severe episode, I get what I call a migraine hangover. When I stay in bed all day, even sleeping feels like work with a migraine.

  • Laura
    5 years ago

    Oh I hear you on that, my job has a very hard time understanding what a migraine does to me!!! They also don’t get that because of the meds I am on when the migraine hits, I cannot drive, and I sure as heck can’t work, because the meds knock me out!!!! My own doctor told me, never drive when you take the meds for the migraine, and I don’t!!!!

    I have been written up, because of missing work due to a headache, and I corrected them each time, it is not just a headache, it is a migraine!!!

    Over the years, and I don’t know if this is true for everyone, but these migraines have gotten worse, the older I get!!! They wear me out, plain and simple!!!

    Oh and the medical profession also keeps track of the pain meds that you use, if you use too many!!! So it really sucks if you go through a spell of having one every week!!!

    Over the counter meds don’t always work, some most of the time, not at all!!!

    I work with some very cruel people, who don’t know anything about what a migraine can do to you, and they believe that you are just trying to get out of work, even when they see me throw-up, lose my balance and wearing shades, because I can’t stand the light!!! All they care about is that you are there to work!!!

    I had to go to the HR person to report that one of my co-workers was making fun of my headaches and was talking about that outside of work to other people!!! I told the HR person that since this job is caring for others with disabilities, that that co-worker was breaking the HIPPA law for telling others about my migraines!!! They did at least told her to stop and wrote her up about it!!! They had to because if they didn’t they would have gotten into trouble themselves, being a care facility!!!

    I am just so very tried of being thought of as a faker, and getting told that it is just a headache after all!!! It is so not just a headache!!!

  • Janet
    6 years ago

    We are just a sea of faces as the song says…lost in a world….until we are recognized as a disease we will be the butt of ridiculous and demeaning accusations about the pain, what we use to relieve our pain, etc.

    Having migraine.com is comforting…but after many years of being a member and reading countless amazing articles…our voices need to be heard outside this circle. I know there are very well,meaning great management staff advocates leading migraine.com…but we are so far away from being heard.

    I highly recommend Dr. Joshua Turknett neurologist and headache specialist in Decatur Georgia …outside Atlanta where I have lived just over a year now. He is or I should say was a migraine sufferer. His book is AMAZING!!!!! I saw him Monday for my first appointment. I am to follow his treatment diet plan…do yourselves a favor a check this out…I will let you know how I’ve weathered the 21 days of my initial treatment.

    http://www.mymigrainemiracle.com

    Get the book…you will not be disappointed. After 38 years..the last 10 chronic…I finally think I understand our move from Las Vegas to Georgia…our first grandbaby just may have been the second reason and dr. Turknett the first.

    I’d love to hear your comments.

    Blessings
    Janet

  • Katie M. Golden moderator
    6 years ago

    Janet,
    I really agree that we have a great base of Migraineurs and we all need to band together so that we can affect change outside of our Migraine.com bubble. I encourage everyone to go to this link and send a comment asking that Chronic Migraine be put into the Blue Book to be considered a disability for Social Security.
    http://migraine.com/blog/migraine-disability-blue-book/
    -Katie

  • Lseibert07
    6 years ago

    Personally what offends me the most is these doctors that have probably or rarely suffer every day in pain, but they put you on pain medication like narcotics and then decided that they know longer want to write that prescription anymore, you go to the hospital and they call you a druggie, a drug addict and judge you because your on pain medicine for something as “trivial as ‘headaches'” even the pharmacists are like that as well. It is really hurtful because I never asked for the medicine I just want one day to not be in pain…I am not sure if that fits with this discussion

  • Corey
    6 years ago

    Not sure it fits in this particular forum, but I can still recall my first migraine doc (circa 1979- I was 5 when I got them/ figured out what it was)….
    He said, “Once you hit puberty, they will decrease or drop off completely!”
    Well, I just turned 40. Thanks, Doc… you lied. lol

    Same doc that put me on tricyclic antidepressants at the ripe old age of 8.
    Doc a few years back wanted me on Depakote. Looking at the side-effect list made me wish for a simple eye-piercing migraine! >:/
    Currently a fan of 5mg Zomig. But with ‘gov’t healthcare’ changing in present days.. insurance no longer covers it.(Thought this was to HELP people?!?! **sarcasm**) Now I have to ‘try’ new generic brands of zolmitriptan. As sensitive to ingredients as I am, this is no small feat.
    But as I can see from others’ experiences, we’re “just migraine sufferers”… you know– we just need to ‘deal with it’.
    🙁

  • Luna
    6 years ago

    Tried a naturopathic physician a few years ago. She was sure her protocol would work. When it didn’t she said “you might consider seeing a counselor to find out why you don’t want to get well”. A GP I went to told me to go off the excedrin for a month. Asked what to do about the migraines. She said “suck it up”. And she said she used to have migraines. As far as I’m concerned (a 40 yr migrainer at almost 70) doctors don’t have answers besides pushing drugs that don’t work. Really had to laugh when a friends wife (he has migraines too) pointed to her head and circled her hand and said that my odor sensitivity was all in my head. No not all in my head, it involves the whole body and it does make me crazy.

  • Msmmain
    6 years ago

    I hate hearing “It’s all in your head” or “just focus on something else and stop thinking about it”. My mom even says those even after seeing me deal with migraines for the last 20 years.

  • Teresa
    5 years ago

    I am lucky enough to have a Mom who also suffered migraines her whole life. Not as severe as I get them, but she has had enough experience with them that she understands.

  • Mindnights
    6 years ago

    to BethAnn5 : This is terrible experience. I had some other migraine people in my family so they knew what´s going on with me. This is a terrible thing to read :-(.

  • BethAnn5
    6 years ago

    I was diagnosed at age 3, but I remember family & friends telling my mother that I was just “acting out” because she was pregnant with my brother & I wanted attention. Yes, what 3 year old throws up & passes out just for attention?
    Then, when I was a teen-ager & they got worse these same “concerned individuals” told mom I was just being a “hysterical teenager”…
    I hate people…

  • Rebecca
    6 years ago

    “That’s just an excuse not to do/finish/turn in your homework.”
    Um, I’m sorry, but it’s really difficult to get out of bed and put on pants whenever I have a migraine, and you honestly expect me to be able to take quality, interesting photos with a migraine (I’m a photography major at an art school)?
    Or during my Lighting class, whenever my instructor demonstrates a new lighting set up and the flashes from the strobes start to make me feel *really* nauseous, dizzy, and light-headed, and I know that if I stay in class and work with the strobes I’d actually get a rager of a migraine. I tell my instructor that and ask permission to leave, and even though he grants permission, he gives the the “I’m not sure you’re telling the truth because you look fine to me” look. Like I really wanted to stay because I love my Lighting class, but sometime the strobes affect me more (and even differently) than others. I can’t control that.

  • wdallen37
    6 years ago

    Like a lot of people on this blog, I really hate it when people act like I’m faking it.I have been suffering with migraines for 5-10 years and have yet to determine what my triggers are. I am currently prescribed Fioricet for my migraines and most times it works when I only take one. On the days I have to take two it literally knocks me out for several hours.
    My own son recently got angry with me because I had to bow out on previously agreed to event and he thought I was faking it. The fact that, after years of seeing me suffer, my own son got mad because I couldn’t make the event really hurt.

  • Sarah
    6 years ago

    I was recently called a “pain med junkie”. Despite the fact I only take one immigran when an attack starts. I don’t take solpadol for migraines, but for other fibromyalgia-related pain. I’ve also been called a head-case, a migraine moaner, been told “it’s just a headache, take a chill pill”, and-my favourite-“volcano-head”. It’s actually rather accurate; my head does feel like it’s about to erupt sometimes (though I didn’t bother telling the person who called me that lol). X

  • Eve
    6 years ago

    So many times I’ve heard “…you get Botox for headaches???” followed by a disapproving look of ‘yeah, right’ and a long stare at my face. I always respond, “well, since just a few of the thirty-one injections are are in my forehead, you won’t see much by looking at my face. I bet if I were bald the rest of my head would look very youthful, though.”

  • ahnonnymust
    5 years ago

    Having just had a round of botox injections 5 days ago, I literally laughed out loud. Maybe I’ll shave my head. 😉 I also had the several days post-injection, full blown “someone just kill me now” migraine last night and it’s still hanging on today. Laughing hurts!

  • scotchbonnet
    6 years ago

    …..And just as I moved away from the page my mums words came in to my head, you must make an effort Jane, and my brothers, we all have to plod on. Grrrrrrrrrr

  • scotchbonnet
    6 years ago

    I have a couple of friends who refer to their headache as a migraine, I’ve suffered migraines for 20 years having between 2 and 4 a week, for them to keep saying oh yeah, I had a migraine today, bit of a bad one as well. I suffer in silence now, don’t mention it to any one, sick to death of trying to explain to people with the response of “oh right” no one wants to understand, it just makes me feel like screaming and shouting, “I am ill somebody bloody notice me” lol. But obviously the yelling may trigger a migraine so will give it a miss………….

  • Sarah
    6 years ago

    Yeah that’s the problem I have with the volcano-head thing. I also have a volcanic temper-but letting rip either triggers a migraine, or exacerbates an existing one lol. That’s why I don’t bother telling the person who called me volcano-head that they’ve given the proverbial nail on the head (ouch! ). I don’t want a debate that’ll only turn into an argument lol. X

  • TwoFeet
    6 years ago

    When I was in high-school, I saw a headache specialist about my migraines. I didn’t have a migraine the day I went to see her, but I answered all her questions as honestly and best I could. She prescribed me some motrin or something.

    Then years later I found out that she told my dad that she thought I was faking…. probably just copying what I saw him doing. (He gets migraines a lot.) Can’t tell you how glad I am that my dad believed me instead of her.

    Also, I don’t like hearing advise that makes it sound like I can just will my migraine away, as if it’s all psychological. I wish people knew that it’s really something physically going on and willing the pain and symptoms away would be like willing away the pain and symptoms of a broken leg or something physical that people don’t expect someone to be able to just pretend it’s not there and suddenly be fine and pain free.

    Flaky. That one can be hurtful because I can’t always divine when I’m going to have a migraine, so it feels like I can either be a hermit or sometimes I’ll have to cancel last minute. It’s not flaky. It’s the best I can do with what I’ve got.

  • Teresa-Zehr
    6 years ago

    I hate it when people with no medical credentials and no real grasp of the situation try to give me a advice. Case in point. Last week when I was in Starbucks chatting and describing how I am doing to a friend (who I might add truly cares about how I am REALLY doing), a man next to me leaned over and launched into how “giving up coffee really worked for me! Yup! No headaches since!” First of all, strange man I don’t know, YOU DONT EVEN KNOW ME!!! And stop eavesdropping!
    That’s what I hate.

  • crs0804@aol.com
    6 years ago

    These posts are priceless! I’ve laughed out loud at many of them. I’ve had frequent migraines since my teens and twenties. Despite the migraines, I managed to work my way through a pre-med college program and then through law school, both with honors. (I add those details to explain I am not a slacker and soldiered on for a long time.) While practicing law, I married and gave birth to two children and the migraines exploded. Daily, chronic, status migrainosus, whatever. Tryptans, antidepressants, beta-blockers, blood pressure meds, anti-seizure meds – nothing seemed to work. I’ve had a neurologist suggest I take up “meditation”; that same neuro questioned my “commitment to my health” when I balked at talking Depakote (look up the side effects) immediately after another anti-seizure had caused me to act as if I had suffered a stroke. I overheard a pain management doctor who was covering for my usual one and preparing to give me Botox injections for my migraines whisper to his nurse outside my exam room “well, she’s here for botox injections but she doesn’t even have a headache today!” (if he thinks botox injections are given to abort a migraine, I DON’T want him treating me). I have never gone to the ER for a migraine; I refuse to do so. I, however, have had to seek treatment from a walk-in, acute care facility near my home when I can’t keep my oral meds down, my usual meds can’t break the migraine, or I’m out of my tryptans and insurance won’t allow any more for the month. One doctor at that facility stated “I don’t believe in giving pain meds for a migraine.” (All I could think was “Let me hit you upside your head with a bat for 3-4 days and we’ll see how quickly you change your mind.”) When I told my neuro what had happened, he gave me a standing prescription with instructions for treatment when I had to go there after hours; on my next visit, I gave those instructions to the doctor and he screamed at me for 15 minutes that he would treat me however he wanted and he didn’t need any help from another doctor (although that doctor was my treating neuro). I just sat there crying and vomiting in the little plastic dish they had given me. As everyone on this site already knows, there is a stigma and prejudice against migraine patients, even in the medical community. It’s difficult to understand how a disease/disorder that causes such widespread disability can be so misunderstood and mistreated by doctors. Thank God we can share with each other and even laugh at some of these stories!

  • Katie M. Golden moderator
    6 years ago

    Sarah,
    As many Migraineurs get tired of turning to medications as their only source of treatment, many use alternative methods such as acupuncture. I personally have tried it to improve my headaches. For me, after about 6 months I did not find that it helped lessen the Migraines, however I’ve heard from so many people that it really does work for them.

    If you’re looking for more info to read on the subject, our website has so many articles, from basic info to personal journeys with acupuncture.

    http://migraine.com/?s=acupuncture&submit=s

  • Sarah
    6 years ago

    A couple of weeks ago, someone suggested acupuncture for migraines. For the first time it was someone who KNEW what they were talking about (prior to me finding this page).
    She had had severe migraines for years before she tried it: and since then they have been a lot more manageable, have been for several years. She works in a vet’s surgery, as vet nurse and secretary, so I trust her to give me honest advice. I just don’t trust my doctor to even consider referring me! X

  • Merri
    6 years ago

    Unless someone notices my pain through the cracks in my facade of normalcy, I no longer mention that I am suffering.

    The simple acts of trying to answer questions and explain thirty plus years of searching for relief is simply too difficult to bear when I’m attempting to carry on as if I’m perfectly fine.

    I’ve given up responding to “Have you seen a doctor?” “Again?” “Didn’t you just have one last week?” “You should try ‘_______'” etc.
    I stare in disbelief instead, smile, then walk away.

    It is, indeed, out of character for me to behave like that, so it tends to get the message across that, despite the good intentions of the person asking questions or offering advice, I really just “Vant to be alone”.

  • joe merchant
    6 years ago

    First time visitor/posting. Great site; appreciate all of the folks on here – and love the comments.

    I’ve had the same migraine since June 2001. Never goes away; just up and down the pain scale. I wear sunglasses full-time (like some others on here). For me; it’s a wonder to see others who deal with the same condition.

    One of the reasons I’m posting is “Jefferson Headache Clinic”. I’m not a fan. I went there years back; when the migraine first started and I was still really learning how to deal with pain 24/7. I went there for help; as they are the ‘experts’ — and was told after my visit that I was a ‘drug addict’ because I was taking one to two percocet a day to manage things.

    I don’t do that now. I’ve learned about things like ‘rebounds’. I learned mainly through trial and error that none of the 48 medicines I have been on – work at all for lowering this thing I live with.

    I cope without doctors now. I’ve seen over 12 of them; mostly Neuro’s who have never suffered from migraine. That’s a heck of a thing – trying to explain to someone in the medical profession what this actually means to life. If I see that smiley face chart with the 1 – 10 on it – again; I’ll throw it.

    Sorry. But – that’s me these days. I’m not always a cynic; but living with this full time has done wonders for my disposition and my thoughts on the medical profession. (that’s why they ‘practice’ medicine, after all).

    Great to see others though; and I mean that. Something to be said for not living on an island all by yourself. I’ll try and post more uplifting messages in the future; as long as the topic isn’t “Jefferson”.

    Best,

  • barb
    6 years ago

    I’m having a two-dayer right now and have called off work today. I normally have two migraines a week, but I haven’t had one like this for a while and I feel tremendous guilt at taking off work, especially during busy school season. I am just glad I don’t have to worry about caring for anyone but myself since that can be hard enough at times.

    Both of the places I’ve been a patient at, the fabulous MHNI in Ann Arbor (Go Blue!), and my Dr. here in TX a lot of my team members have had migraine and been very sympathetic towards migraineurs. I don’t know if you’ve tried them, or are able/willing too, but it might be worth it.

  • TwoFeet
    6 years ago

    Are there any medical doctors who get migraines? Because I had some interest in that field, but realized that there was no way I’d make it through the demanding hours with all the migraines I was getting.

  • Jan Piller
    6 years ago

    When I was told “It’s just a damn headache”, I don’t know if I was being told that I didn’t know any better (and neither did my doctor for the past 26 years) or if I was being told I am a liar. Either way I felt like I was being called either “stupid” or a “liar”. They might as well have just called me one of those names. And it came from somebody I loved very much and I think that hurts the most… when it comes from somebody that you think you can trust.

  • Sharon
    6 years ago

    When you get a migraine and people tell you to go take a panedol or a whatever. But you have to go take your Zomig or whatever script medication your doc gives you. People think taking a headache pill over the counter will fix your migraine in 5 mins. ITS NOT A HEADACHE ITS A MIGRAINE. Two very different things.

  • Sharon
    6 years ago

    People that call Migraines a headache obviously have never had a migraine or a really severe one. Because there is a huge difference between a headache and a migraine. And only a migraine sufferer knows the pain and suffering of that. A person who doesn’t know that kind of suffering labels a migraine with headache. Hello??. No no.

  • ChandlerM
    6 years ago

    I’d thought the most hurtful thing I’d ever heard anyone say about me–they weren’t bold enough to say it directly to my face–was that I was a “pill popper.” As if a migraine was just my excuse to pop some dope and get high. So, of course I had to tell him, “Dude, I’d much rather not have these friggin migraines or have alcoholic idiot cops like you who’ve just completed a jr. DARE certification course, psychoanalyzing my supposed “pseudo” sickness and casting judgment.” But, I was wrong. THE most hurtful thing ever said to me came from my soon to be ex-husband of ten years and another functioning alcoholic cop, was that I was a burden to him. Really?? What did you think dealing with your alcoholism was like for your family..a joy??

  • crs0804@aol.com
    6 years ago

    ChandlerM, I’m sorry for your loss but, hopefully, you now realize you’re better off without him. (Trite, but true.) My now ex-husband left me (moved out unannounced while I was at work). I had told him the night before that I didn’t think I could continue to work with the migraines. They had become chronic and I just wasn’t able to get them under control after four years of trying. My doctor wanted me to stop working – well, that’s not exactly true – we had a 4- and a 2-year old at the time so there was still lots of work to be done but, between practicing law and raising babies and fighting migraines, I just couldn’t get better. But my ex-husband had always said he would never have a wife who didn’t work. Guess he meant that! That certainly revealed his priorities and told me everything I needed to know about him and our so-called relationship. If your spouse doesn’t care if you are in pain every day and is not supportive of doing what needs to be done to reduce your pain, you don’t need that person as a spouse. Sorry – just my opinion. Wishing you happy and pain-free days!

  • Sonia Garcia
    6 years ago

    I was at a level 8 and I called the office and my last neurologist told me to take a Tylenol. R u kidding me??? I told him he obviously had never had a migraine and he repeated his statement. I hate migraines!!! and neurologists who don’t know about migraine pain!

  • Khris Price
    6 years ago

    I have also suffered with Chronic Migraines for 26 years. I was put on disability…but…It was hard. I was rejected three times and had to finally get a lawyer to help me. I wish you luck! My Dr. is also has migraines so he understands how I feel.

  • Kara
    6 years ago

    I HATE (!!!!!!!) people saying to me that I am faking and just trying to get sympathy. I have had migraines for over 25 years. As I get older, the migraines have seemed to increase in not only pain, but frequency and the other effects that it creates (light sensitivity, nausea & vomiting, sound sensitivity, feeling weak and tired all the time, insomnia, etc. Now that I am applying for disability due to the migraines, I feel that even the government systems are implying that I am faking my migraines just to not work. Trust me, I DO NOT WANT THESE MIGRAINES!!!! I also have fibromyalgia and bipolar disorder which have also increased as I get older. It is just a extremely steep hill that you can’t get a foothold on in order to climb it.

  • Newdancerco
    6 years ago

    My favorite: “it’s a medication overuse headache; you need to stop taking everything for 6 weeks before we move on with treatment, because that will most likely fix it.”
    EVERY SINGLE DOCTOR wants to do this. I’ve done it at least 6 times, and it NEVER WORKED! Why would this time be different than 6 months ago, you idiot?!? Read my file or ask if we’ve done it, don’t assume you are the first to think of it.

    You aren’t. It is standard, you aren’t brilliant. And I’m NOT GIVING UP MY MEDS TO SOOTH YOUR EGO.

    I’m cranky about this one.

  • Sarah
    6 years ago

    Sympathetic headaches, yeah I’ve heard that one as well. Except migraines aren’t the same as headaches, as we all know, so it can’t be that. And it’s worse when a doctor says it! X

  • Crystalrz4
    6 years ago

    I agree 100%!!!!!

  • kim e
    6 years ago

    Newdancerco, I feel your pain…Literally! As someone who has experienced migraines since my teenage years to my recent transition into daily chronic migraines this past year, our experiences have been very similar.

    After much research and FINALLY locating and establishing a relationship with a headache specialist, I was excited about the hope of relief from a “qualified” professional with several years of experience with migraines. From day one, it was assumed that my daily chronic migraines were a result of medication overuse. NOT! Regardless of what I said or my husband said, the assumption remained. I found some relief the first time or two from the familiar Vicodin/phenergan regimen but that was it. Tramadol/phenergan/Benadryl via IV at an urgent care facility helped once. As a person who has worked in the medical field for years, I have always been very careful about the regular use of pain meds. When going to an urgent care this past year, I was chided and labeled non-compliant when I explained that I did not need a controlled Rx to take home as it was not the best way to treat my migraine. While my headache specialist appeared relieved to hear this, he continued to treat me as a “drug seeker” explaining why he believed chronic migraines were mostly due to medication overuse. I responded with…doesn’t the research also show that sleep deprivation may also lead to chronic migraines?

    I have dealt with insomnia as long as I have dealt with migraines and I knew this was a major trigger for me. His reply was yes, but the majority of people do not have insomnia, they have poor sleep patterns. We don’t treat insomnia here and will not prescribe meds for insomnia. “We have found that…..” and I simply let him talk. That was it. Several months later I called to ask if a sleep study may prove beneficial and was told that I could get a sleep study but even if it indicated a problem, he would not address it because his philosophy is to treat patients via non medicinal means as much as possible in conjunction with a preventative. Nothing would be prescribed for assistance with any sleep disorder. The final straw was at my last appointment when I asked him if he knew about a medication called low dose naltrexone and did he think this may be of use with the treatment of migraines. His anger was evident in the color of his face, the tightening of his jaw and the heavy fingers on the keyboard. And his response to me was quick…we do not prescribe opioids at this practice and if you are insistent upon this route, I will happily transfer you to another physician who specializes in pain management. He may be able to accommodate your desire to experiment with this drug. Unfortunately, he did not realize this medication was the EXACT OPPOSITE of a controlled pain med (known as an opiate antagonist receptor) and despite my attempts to explain, he refused to listen. Instead, he wrote me another prescription and reminded me again that he would be happy to transfer me to someone else. Ironically, this physician who does not advocate the use of pain meds, controlled drugs or sleep aids has written me at least three prescriptions for a class 1 antipsychotic (Thorazine) to use as a rescue med. I have filled this prescription once and taken it no more than a total of five times in the last year because of the effect it has on me. It basically incapacitates me for two days.

    I cannot function as a responsible parent or adult when under the influence of a medication that renders me absolutely useless. FRUSTRATION AT ITS MAX!!! I’M SO TIRED OF NOT BEING LISTENED TO AND BELIEVE THIS HEADACHE SPECIALIST HAS NEVER HAD A MIGRAINE. If he had, he would LISTEN and treat accordingly.

  • Wayne
    6 years ago

    Stay cranky! I have had the same experience.

  • Vicky Page
    6 years ago

    The single most offensive thing anyone has ever said to me regarding my migraines was “Are you sure you’re not hypochondriac?” In my mind’s eye I saw my fist colliding with the person’s face. He was the first but not the last to say that. I still need to come up with a more appropriate response than “Don’t. You. EVER. Call. Me. That. Again” which is my natural reaction to that comment. I need the answer to convey how insanely ignorant they are. There’s nothing wrong with my mind, I’m not a hypochondriac, I’m not “just stressed” and, no, homeopathy, yoga, acupuncture, essential oils, rock crystals and standing naked in a tub of camel milk during the 4th full moon of the year didn’t work.

  • Mindnights
    6 years ago

    Vicky, same here! 🙁

  • BethAnn5
    6 years ago

    I had someone say something similar to me during an attack…I threw up on them…gee…they don’t speak to me any more.

  • april
    6 years ago

    Vicky, I like your spunk!! I wish I had had the guts to say that too.

  • DitzzzyWoman
    6 years ago

    For the entire duration of my many years with my primary care doctor BEFORE he finally referred me to a neurologist…I had over 3 filled file folders on my headaches. I can not tell you how ashamed or hurt I was when I overheard the doctor tell a nurse that I was a “frequent flyer” because of the headaches.

    When finally referred to a neurologist, I too, got the go-around for 3 years. I now do not have a neurologist or a primary care doctor since I moved away from my hometown September 2012. I am honestly and sincerely scared out of my wits if I should mention my chronic migraines to a new doctor when we finally arrive in Phoenix in a couple of months.

    I just do not want the run-arounds, the rolled eyes, the comments…NONE of that! I did not ask for this genetic disease and was diagnosed with MDD and anxiety because of my migraines. And since learning I have agoraphobia on top of that, the thought of even visiting a doctor’s office now for any reason, frightening is beyond the word.

    I have not seen or visited a single doctor since 2012, am on no medications other than Ibuprofen, Black Coffee and Ginger Tea. My migraines still put me in bed.

    And ALL doctors make me feel ‘cursed’. So, “frequent flyer” needs to be banished for life. I remember wanting to crawl away in shame and cry because I was so embarrassed for so many doctor visits, heavy duty pain killers and money that I feel was wasted because no one took me seriously.

  • MigraineSux
    6 years ago

    @DitzzzyWoman– If you’re still in the Phoenix area and haven’t found an acceptable physician yet, may I make a suggestion? I have treated with Dr. Fern Arlen, MD, for more than a decade. She’s a neurologist, located in north Scottsdale, but more importantly, she also is a migrainuer. She will not EVER roll her eyes at anything you might say. Additionally, she not only is aware of the latest, cutting-edge medication regimes, complete with drug reps bringing her lots of samples which she most generously provides to her patients so that they don’t have to incur the cost of a medication that may not be effective for them, she is also acquainted with several other neurologists throughout the United States who actually provide long-term hospitalization for chronic migraineurs until a successful outcome can be obtained. This woman is a god-send. If she isn’t on your insurance plan, paying for an office visit is money well spent. My biggest fear is that she will someday be retiring. I don’t want to sound like a shill, so I’ll stop now, but before you give up on physicians, please think about seeing her.

  • anita.a
    6 years ago

    I hear ya sister! I had a top neurologist explain how dangerous my condition was and all that roll, then had his STAFF perscribing meds and doing all they could to keep me from coming in. Because of them I believed spending 15 to 20 days crippled by a migraine,but not in the hospital was normal”control” of the condition. When I finaly forced an office visit he was as shocked at my file as me, it was all post it notes. I went to a new dr after that to avoid the evil staff. In a year I got control. REAL control. I get migraines very mildly this time of year and my meds I carry with me knock almost all of them out. GO to a new Dr. DONOT give up. If I can get control you can too, please keep fighting! Also, Migravent, its an otc supliment ( butter burr extract) Dr Tingler had me try it and it has made such an amazing difference that my other good migraine dr (Tingler went to the vetrans hospital to help our suffering vets) and my gp now write letters to our insurance company to have it covered like a perscription. There are good Dr.coms out there and real help. Its frustrating but don’t give up.Ever!

  • Monsmig
    7 years ago

    How about a question! Have you gone to the doctor? And when explained that I don’t have insurance and I already try to get some help but can’t go beyond my means there is another phrase I could live without hearing: “well, you have to take care of yourself”

  • Nicci
    5 years ago

    My but the conversation you quote is all too familiar. I have to control myself from asking, “Do you know how many other a****les have asked me the same insipid questions?” I should really ask them, “Do you hear yourself right now?”

  • Vicky Page
    6 years ago

    The answer in my head, and the one I’d love to say out loud is: “THE DOCTOR! HOW DIDN’T I THINK OF THAT!!”. Instead I say that I’ve had really bad headaches since I was about 6 years old and migraines since I was 10, so no, I haven’t gone to “the doctor”, I’ve been to at least 5 specialists in 26 years

  • SnoopyBun
    7 years ago

    I loved it when my Doctor had me keep a migraine diary and since I didn’t throw up when I got a headache (can’t stand noise, check, light now way — somebody stabbing my eye with a knitting needle — right on) since I didn’t throw up, I don’t have migraines.

  • barb
    6 years ago

    I remember my Peds Dr.’s saying that when I was little, but that was also 20+ years ago…so I forgive them since they were great Dr.’s otherwise.

    However by 9th grade I totally did, booo!

  • Sarah
    6 years ago

    No chucking up means no migraine? Really? I have nausea but I don’t always up-chuck with my migraines. If I did, I’d be UNDERweight, not OVERweght! I probably have only 3 days a month when my head doesn’t feel like it’s gonna erupt! X

  • Nancy Harris Bonk moderator
    6 years ago

    Hi Sisyphus’s rock was a migraine,

    As if throwing up meant you “really” have a migraine! That’s how you know the doctor you are seeing doesn’t have a true understanding of migraine disease 🙁

    Nancy

  • CC
    6 years ago

    I got the same thing! Nausea or “did you actually throw up?” OH! Well, nausea? You’ll be fine. If you “actually” threw up that was a whole different level of severity. Like any of us hope to throw up, or don’t actively use every fiber NOT to throw up. So now I lie…Absolutely. Hazmat was called in. They’ll be cleaning for weeks.

  • SnoopyBun
    7 years ago

    No, this was my preferred provider physician. Since, in her opinion, I didn’t have migraine, she would not refer me to anyone. Thanks for the link. The’ve made us change insurance carriers at work, and I think we’ll be more able to see doctors with out a blessing from above.

  • Ellen Schnakenberg
    7 years ago

    gdpz – I don’t know exactly what you mean I’m afraid, but you do not have to suffer vomiting to have Migraine. Are you seeing a board certified headache and Migraine specialist? Here is a list of the doctors certified in the US: http://migraine.com/blog/looking-for-a-migraine-specialist/

  • dreamingof
    7 years ago

    I am epileptic, and usually get headaches and odors/smells as symptoms of my aura. I had never experienced a true migraine until I was given a spinal tap: WOW. I could barely lift my head off the mattress and I had to move reallllllly slow. The throbbing went in a contiguous ridge from the middle of my skull all the way down my spine. The throbbing pain also made my teeth hurt, and I could only sit halfway up in bed with my head supported by pillows stacked against the seizure rails. I had constant nausea and could not eat for two days. Morphine didnt even dull the sharpness of the pain; and it was only after I went home (I couldnt drive myself of course) that I had the idea to self drug with 20 mg of prednisolone twice a day. By the end of the first 24 hours, the headache was almost gone. All of you have my unreserved sympathy.

  • Shani
    7 years ago

    In addition to all the wonderful ones below; I have gotten “Again?!” and then there’s the drug lecture you get from the nurse when you call to refill your meds at the dr office….for tripans….not even narcotics and my health plan regulates the pitiful amount per month I get anyway!! The rest of the month your head can just explode once you exceed your maximum allotted. WHY WHY would they make it so difficult to access pain relief???

  • Sarah
    6 years ago

    Which triptan do you take hun? I’m on immigran 100mg, increased from the 50 I was on until last week. Sumatriptan. Where do they come up with these names? The jury’s still out on whether they actually work for me. X

  • anita.a
    6 years ago

    Heck i told.them NO narcotics and thats all they would give me.

  • Monsmig
    7 years ago

    Love the site! It’s like hearing my own feelings written by someone else. Yes ‘again’ and ‘have you taken medication’ heard them before or just the look people gives you it’s like they are saying “really? Another one?”

  • rdsonja99
    7 years ago

    I am so glad I found this site as I no longer feel so alone. My nurse likes to ask if I have taken my meds…No I never thought of that. I like to be in pain! UG!

  • TNmigGal
    7 years ago

    It frustrates me when I tell medical professionals (ususally in the ER) that I am having a migraine and they say, “OH, you have a headache?”. They are just not educated on all aspects of migraines. One of the hardest symptoms I deal with (when going to the ER, etc) is when I become very talkative and “goofy”. I’m usually a very quiet and shy person and when your brain decides to take a crazy turn during an attack, some doctors think you aren’t having a migraine attack if you are able to carry on a conversation. Luckily, my Primary doctor and neurologist are well eductated on this aspect and understand it is a symptom / phase of the migraine.

  • MigraineSux
    6 years ago

    Fully concur with your assessment of ERs…. There is very little good that has ever been provided to me by a physician in an Emergency Room. ERs are loud, brightly lighted places, with lots of malodorous smells, all of which only make a nauseated migrainuer feel much, much worse. And ER docs are way more interested in patients covered with blood, than those who ‘just have a headache’. My neurologist has provided me with almost all the necessary medications that an ER may or may not have. Always fun to wait five hours because the hospital pharmacy staff isn’t familiar with those exotic new drugs, **triptans**. (Sarcasm font is on ‘high’…) About the only reason I’d even consider a trip to the ER is when the migraine has lasted three days, the nausea has progressed to incessant vomiting, I’m dehydrated, and I need IV fluid replacement. Otherwise, I avoid them at all costs.

  • B. Morebello
    7 years ago

    I’ve actually just called my neurologist when my migraines had me incapacitated and she had me come in and the nurse gave me a shot. She told me never to bother going to the ER or urgent care and to just call her.

  • Shani
    7 years ago

    I know! I swear the ER is the last place on earth you want to be with a migraine. I have to be literally knocking on death’s door! Keep your chin up… we’re survivors! Somehow!

  • TNmigGal
    7 years ago

    Yeah, they tell me all they can give me is Benadryl and Phenergan – Like I haven’t tried that at home already. I don’t go to the ER unless it has been 3 + days of severe migraine attack.

  • Shani
    7 years ago

    Did you ever have them give you Benadryl? Oh yeah that’s really a nightmare!!!

  • robertallen
    7 years ago

    “It would be great if we could get people to be more sensitive about the sorts of things that they say.” Um, no it would not be great … Over-sensitivity to speech is at the root much of the current political polarity in the USA today (and deadly violence around the world). We need to get back to ‘sticks and stones will break my bones but words will never hurt me’ .. and stop insisting that others walk on eggshells when they are around you. Correcting misconceptions about migraines is an opportunity for a warm and enlightening conversation, not an excuse to be offended or play self-righteous (and annoying) victim.

  • Nancy Harris Bonk moderator
    7 years ago

    Hi brittmax,

    Very true – I understand people probably say these things out of concern, but they extremely irritating.As if a vitamin would do the job, we’d all do it!

  • brittmax
    7 years ago

    I hate hearing “Do you take vitamins?”. As if it wouldn’t have occurred to me (or anyone on the planet) to try a basic supplement available to everyone. I know they’re trying to be helpful, but it just frustrates me. I just want to say “Oh, wow, a multivitamin? I never thought of that. Thanks, I’m cured.”

  • rugratz2222
    7 years ago

    and I am very ignorant of migraines so be patient with my sincere answers … probably would not do anything, but I am curious. Stumbled on this website from another link … read through the forum replies and I am as guilty as any others. Yeah, I wish I had a magic cure for everyone … got a friend who says she has them all the time, but she IS a major complainer about life in general – a major emotional “taker”, so we don’t take her seriously anymore … maybe we should in this respect. I am a baby with pain – cannot handle it – so I know I’ve never had a migraine before. I’m just open to hearing about it – sarcasm to this newbie is expected and OK, too.

  • Ellen Schnakenberg
    7 years ago

    rugratz2222 – Thanks for your comments here and for looking honestly and being open about your desire to learn more about the condition.

    Migraine is a genetic neurological disease. Our brains don’t work quite like a non-Migraineur’s brain works. One thing about Migraineurs is that our brains are super sensitive to physiological changes. This is why there are such an enormous number of potential triggers, and why what triggers a Migraine attack for one patient won’t in another patient.

    Migraineurs are trained to learn to recognize their triggers and avoid them. We can’t always make sense of our triggers, but in the end, making sense of them isn’t really that important. What is important is our ability to avoid them whenever possible.

    I would encourage you to remain supportive of your co-worker’s Migraines and deal with the other issues separately. It might also be helpful to understand that Migraine often comes with comorbidities like depression and anxiety that may be contributing to any patient’s frustration with their disease.

    Thanks for your questions and your desire to become an informed person! We love that!

  • Elaine
    7 years ago

    I’ve had traumatic, go to bed-turn off all lights-use black out curtains, and cold cloths over my face & back of neck since 2003. I also have wonderful loving family members who just don’t get it & think 2 Advil will solve everything. The see me throwing up during the night or early morning and I wish they’d just quit asking “what’s wrong?” It’s 2012 now, 9 years of this and they still don’t have a clue. Or they say, just get up, put a smile on your face & you’ll feel better. I wish I could really tell them exactly what I feel about their comments!

  • Tricia Ann Lahr Crowe
    8 years ago

    My favorite was from my husband “are you going to let it ruin your whole day” yeah I am letting it! Are you kidding me? Let me stab you in the eye with a skewer and let me ask you if you are going to let it ruin your whole day?

  • kanzz
    6 years ago

    “If you really have a migraine, then why are you at work?” These words go straight through me. But I welcome the opportunity to answer them directly, rather than having someone talk behind my back. It’s easy to explain, really.
    First, let me just say that I’m an RN, and get that out of the way. One thing I understand, both as a patient and as a nurse, is that ANY type of pain can be rated on a scale of 1 to 10. This includes migraine pain. Sometimes it’s hard to nail it down, but we can give it a good shot.
    And, since a migraine is NOT just simply a bad headache, it too can be rated on a scale of 1 to 10. Some migraines are manageable and some are not. Besides, if I missed work every time I had a migraine, I wouldn’t have a job.
    Just as a side tip – you might want to reserve using the number 10 for something besides migraine. I’ve worked ER most of my career and I know they frown on using that number for anything less than what would require an ambulance – e.g. heart attack, severe burns, motor vehicle accident, fractured hip, etc. That isn’t to say that sometimes we don’t feel as though we need an ambulance, but you get better results sometimes if you stay away from that number.

  • Katie M. Golden moderator
    6 years ago

    Kanzz- that’s a great tip. Saying you have a level 10 Migraine could either get you ignored at the ER or they could do a battery of unnecessary tests. Thanks for giving us a perspective from the other side!
    -Katie

  • kim e
    6 years ago

    Ok, so I have had a migraine all day today – like what’s new? – but it hasn’t been a good day. So, Thank you so much! I literally laughed out loud!!!!!

  • april
    6 years ago

    Your response gave me a laugh, too!! And if I may, I think I will say that the next time somebody says that to me!

  • rdsonja99
    7 years ago

    I love this! That is about what I say to most people. Most days I also say I would prefer someone just stab me in the eye though, LOL

  • Shani
    7 years ago

    OMG! I’m just having one of “those” days and came across your post and just laughed so so so hard. Thank you!

  • ckl4
    8 years ago

    Been having migraines for years…people (not my family, though, since they almost all suffer too), woud be like, “oh, migraines, you missed school/etc for that? I have one right now”. Me, grimly: “No you don’t. If you did, you be curled, crying and wretching, ’round a toilet, and then you’d crawl into bed with an icepack and turn the lights off and almost vomit (or actually vomit) anytime someome walked or talked too loudly….don’t smile cheerfully at me and tell me you have a migraine- you have no freaking clue. ” Thank G-d I don’t get super-sever migraines that often, although I get weather and menstrual related ones all the time…

  • kim e
    6 years ago

    Honestly, since I have started to have daily migraines, it is not that they are not as painful, I believe that my pain tolerance has increased. That doesn’t mean that I don’t have days where I just want to die. Those days still occur but I believe many migraineurs develop a higher tolerance to pain in response to the daily suffering. We are survivors. In this case, what hasn’t killed me has made me stronger. I still prefer they disappear forever. Being strong can be overrated at times! (;

  • Wayne
    6 years ago

    I agree with sisyphus. I have what I refer to as a “phantom of the opera” pain every day. Upper right side of my head and face hurt at about a 4 routinely. I have visual deficits as well every day. I still have knockdown dragout headaches about 10 days a month.
    Language, both verbal and non-verbal is important. I seem to be hypersensitive to guilt and notice eye rolls and expressions more than words.

  • CC
    6 years ago

    Sorry, ekellyclark, but that is patently false. Chronic migraines are not less severe than any other migraine. Please read that again. IMHO, the difference is ones ability to cope with the pain. Anyone’s good day would be a 0. Going from that to a 4,7,10 whatever, may seem more traumatic because of the difference in severity. I have a migraine every day, but generally range between a 6-9. So my increase may not knock me over at a 6 the way it would if it came out of the blue. I assure you, my 9s and 10s are every bit as horrific as for other sufferers.

  • ckl4
    6 years ago

    True. As I get older and my migraines become a little more frequent, I see that. In that particular case though, she was not a migraineur, she just thought I was making an excuse for missing class. You are right though!

  • ekellyclark
    7 years ago

    Well, not quite true. If the person deals with chronic or transformed migraines, they are less severe.

  • Catherine Charrett-Dykes
    8 years ago

    love the idea of addressing the language since it is one of the few things we have left to get our message across….. if my brain was working I might be able to suggest something but it isn’t cooperating today…lol.

  • Latrese Conaway
    8 years ago

    I get…”if you have a migraine then why are you up n not laying down” at times I can function but it doesn’t mean I’m not hurting…I just had them for so long I know when and what I can and can’t do with one….feels like I’m being hit with a hammer in my head nonstop

  • Wayne
    6 years ago

    Pretty bad when we have to justify our effort to be out of bed!

  • Newdancerco
    6 years ago

    love this one! Because if I laid down every time i had a migraine, I’d never get out of bed!

  • Sara Borders
    8 years ago

    I had a neurologist [whom I was seeing for over 5 years] tell me that when they switched from periodic to chronic [living with a constant migraine for over a year now] that it was my fault for being too stressed, antidepressants would help my mood, and that there was nothing he could do since it was ‘all in my head’. Really? Because one of the top headache centers in the country saw me weeks later and hospitalized me right away and even with their big brains cannot find anything to bring me relief. UGH! Like we don’t have enough to deal with, we have to deal with bullcrap from our practitioners and our family/friends? Knowing I’m not alone is my only saving grace!

  • CC
    6 years ago

    I went to a top national headache clinic that also hospitalized me. I, too, left without improvement. The irony is one of their procedures was to stop all existing meds and start you on their regimen. After I flew out for a follow up, the MD assigned to my case informed me I hadn’t improved because of medication overuse. I inquired how taking the medications prescribed by this prestigious clinic meant I was suffering overuse (since urine tests kept close track of all medication levels–which I also mentioned) and he just yelled at me without much to say.

  • Chrissy Mulato
    8 years ago

    If I’ve learned anything from being on this earth in my “21” years, it’s that you can’t possibly know what anyone is going through unless you are that person. I hope you find some relief to enjoy this beautiful day today! Hang in there. So many people judge what they simply don’t understand. I didn’t read the article, but I just wanted you to know you’ve been in my thoughts.

  • Chris Colbert
    8 years ago

    Yeah I do lol it sucks :/

  • Sara Borders
    8 years ago

    Absolutely true, Chris. No matter where they come from I would not wish them on anyone. I just want some relief so I can live/enjoy my life. I know you want the same.

  • Chris Colbert
    8 years ago

    Well atleast its not from TBI or ptsd :/

  • Ashley Nicole Phipps
    8 years ago

    my brother would make fun of me every time, I got a migraine I would take an excederine and he would pop out randomly and yell “E IS FOR EXCEDERINE, OM NOM NOM NOM” and everytime I would go somewhere fun with my friends I’d get a migraine and they’d ask if I had to go home to take care of it or if I needed tylenol. What I hate the most is that some people try to compare themselves with you, like “hey I had a migraine once 20 years ago, it was terrible, then it went away! that’s all I remember” I get them every week :/ I also get the sarcastic “you always have a migraine or a headache” they act like I can control them or like I’m faking them to get attention or to get out of something.

  • Nida Ahmad
    8 years ago

    people are so ignorant about migraine, every1 tries to advice u to “do this” or “do that”…. or sometimes says change your lifestyle, eating habit, underweight, take care of urself like I haven’t dealt with my migraine issues everyday. it is so frustrating that u constantly analyse urself n then other poeple around u says “u always in a bad health”…….. how frustating is that when u explain your condition from A to Z and even then no1 understands.

  • LisaAnn Sicoli Coleman
    8 years ago

    You can tell by the expression on people’s faces when you describe your symptoms that they have little (if no) sympathy. Most think it’s “all our heads”. But, my personal favorite is when people ask me “You’re STILL getting headaches and vertigo?”, as if I have the answer to this problem and am choosing to suffer needlessly year after year…very annoying indeed…

  • Penny Johnson
    8 years ago

    you are right . i dont get headaches to your degree. but i get occassional . i know people that get them bad. where they need meds. i can olny imagine. i get nausa easy but nothing i can.t handle. when i was sick 2 years ago the chemo gave me every side effect you could get.

  • Teri Robert
    8 years ago

    LisaAnn,
    I’ve had Migraines for over 50 years and still run into that. For years, I’ve kept a copies of a printed page about Migraines in my purse so I could hand it to the clueless. We recently published an article here with links at the top and bottom to a PDF version that you can save to email to people or print to give to people. Maybe it would help. It couldn’t hurt. Take a look at http://migraine.com/blog/10-things-i-want-to-share-about-migraines/

  • Kristy Pfeifer Leva
    8 years ago

    People are cruel. Wait till they have a real problem.

  • Sarah Estep Preo
    8 years ago

    I love this article. Its great to read stuff by people you can tell TRULY get it. Its easy to spot an article about migraines and don’t suffer from them. All the comments I’m reading down here, I want to yell ME TOO! Its so hard when you’ve hit a wall with loved ones who’ve become “too used” to your headaches…or the ones who still think I can just “walk it off” and “just think more positive” AND, wondering why I cant get more things done “what do you do on your days off?” (INSERT SCREAM HERE).

  • Heidi Roswell
    8 years ago

    Wow! All great comments! I’ve had migraines for 29 years and have heard just about all of them. They’re all so infuriating! I love it too when people make broad-brush statments like ” I’ve heard it’s just a potassium defficiency”. That being said by a nurse I work with recently. If it were just that easy I think we would all -get more potassium, drink more water, stop stressing, just take a tylonal, etc. I wish everyone a happy, healthy, migraine free, holiday season!

  • Gretchen Large
    8 years ago

    And I have to think that someone with a BAD hangover is LUCKY! The headache will go away and the whole deal is completly preventable. Guess I’m not as sympathic as I should be!

  • Linda Wheeler Donahue
    8 years ago

    Hope those miserable migraines are easing up, Hon.

  • Nicolina Alford
    8 years ago

    I wish the rx medications were not so expensive, thankfully I have good insurance but there is nothing worse than going to your local pharm to pick up your meds only to be told that its too early for a refill cant quite understand how insurance company’s can decide how many migraines I can have a month….If I could control the number I would probally prefer no migraines!

  • Dan Levesque
    8 years ago

    No doubt, as I am only allowed 12 Zomig a month. This is where I wish I could share a migraine.

  • Sandi Musser Ronco
    8 years ago

    I’m really not sure where to write this but my Daughter suffers from migraines and she is 13 years old today she had to go to court because of missing school and they decided to make hr a deliquent and she has all this stuff she needs to do! Due to being a migraine sufferer!

  • alphabet
    7 years ago

    I am so sorry for your daughter. My mother, daughter and I all have barometric pressure triggered migraines. I once saw a doctor who told me “a headache is a headache” when I calmed down and restrained my desire to kick him in the ding ding, I decided he needed educating so I printed out several pages of material pertaining to migraine and mailed them to him. Perhaps if you could do the same thing?

  • Marietta Johnson
    8 years ago

    This is terrible!! (but I have to say I am not too surprised given some of the things I have experienced in my life). I have weather triggers, along with several food triggers, and some that I still don’t know. These people are just ignorant of what migraine really entails. There is tons of documentation that weather changes are migraine triggers. I do hope you are able to resolve this. I have great sympathy for you & your daughter.

  • Debora Cloutier
    8 years ago

    Sandi Musser Ronco I feel for you ..I get 4 different migraines ..Weather, Food, monthly visitor, and allergies…

  • Sandi Musser Ronco
    8 years ago

    Teri Robert Yes I have all documents and they said she had missed to much! She is only 13 and we no one trigger is the weather and they said they dont belive that! We are trying to find out other triggers at this time.

  • Teri Robert
    8 years ago

    Sandi,
    I don’t see how this can happen if she’s under a doctor’s care. Did you have documentation from her doctor to take to court?

  • Mayte Archilla
    8 years ago

    “Oh you still have a migraine hasn’t you’re doctor found a cure yet?, or take one of those pills it’ll knock it right out” lovely statements………

  • Pam Weaver
    7 years ago

    The people in my life that constantly ask when my next dr appt is and then afterward say, “I just can’t believe they can’t find something to help you!!” Like at every dr appt they think there’s a new magic pill that someone hasn’t thought to to give me yet! C’mon I’ve been dealing with this for over 40 years, go to one of the best HA Centers in the world and they’ve just not thought to give me the magic bullet??!! Then when the people in your life just start to disappear under the guise of ” not wanting to disturb me” when they know I turn my ringer off if its a bad day for me. Wow, didn’t realize I had that much venting to do, but your comment really resonated with me! Thank you!

  • Maureen Baxter Douglas
    8 years ago

    The thing that truly bothers me is the DR’s ignorance. They say the most ignorant things. I had a 19 day attack two months ago. I usually just ride them out because I have had them for years this way. Because of advice given to me through this group I thought ok I will call and see if we can find a way to end this. I called my Dr. first because going to the ER should be the last option. NOw mind you she is treating me with Topamax for a preventive and Imitrex for an abortive so she is very much aware that I have them. She advised me to take Excedrin migraine. That kind of ignorance it what frustrates me more than anything. I can handle explaining this over and over to people. I can handle losing friends because they cannot handle it. But I am tired of the lack of knowledge in the so called trained portion of society.

  • Marietta Johnson
    8 years ago

    Georgia Slesinger my husband is learning migraine speak rapidly (we’ve only been married 2.5 years) But, yeah, I have seen former co-workers of mine slam the doors to the ED rooms, go in and flip the big bright light on in the rooms, and one actually shouted everything she said to the pt as if she were talking to someone who was hard of hearing, not someone presenting with complaint of migraine.

  • Georgia Slesinger
    8 years ago

    Marietta, that’s awful:( Hard to believe health professionals could be so ignorant and uncaring:( I’ve spoken gibberish so bad at times that my husband has had to translate for me, lol! Or as he proudly likes to say, “Don’t worry kids; I speak fluent migraine.” Bless his heart:)

  • Teri Robert
    8 years ago

    Marueeen,
    Time for a new doctor!!

  • Marietta Johnson
    8 years ago

    trained professional people are as ignorant about migraine as the general population unless they have specifically sought information about migraine. At least that is my experience. Working in a hospital for a number of years, being told that migraine didn’t cause me to loose words or speak total gibberish, or loose balance or motor coordination, changes in vision, etc. things that made me not able to work. (I was just a slacker and a malingerer)

  • Maureen Baxter Douglas
    8 years ago

    Sorry that doesn’t answer it ….I guess it would be dont’ call me a hypochondriac because I do believe that is what a lot of Dr.s call us.

  • Shell Gingg Romo
    8 years ago

    And don’t tell me you have a migraine if you’re up and walking and can still function.

  • Pam Weaver
    7 years ago

    Yeah, like Teri said, some of us have been dealing with this so long that we can function up to a certain point. I can function (usually) til it gets to a 7, but it doesn’t mean I’m not dying inside.

  • Latrese Conaway
    8 years ago

    I get that all the time…if your up walking around you should be fine… I wish migraines on no one except those who speak those words…

  • Allison Glover Brochu
    8 years ago

    Teri Robert: I *think* Shell means that people say that to her. Like, “If you’re walking around and doing stuff then you can’t possibly have a migraine!” — ergo, no sympathy for you.

  • Georgia Slesinger
    8 years ago

    I agree, Teri. I have worked through many a migraine and I have also had migraines so bad that I literally could not stand up from my chair without falling down. It’s not the same migraine every time.

  • Marietta Johnson
    8 years ago

    Shell Gingg Romo That is the way some of my migraines are. Then, sometimes, for usually brief periods of time, I can concentrate hard enough or ??? something and function for a brief time, but that takes SO much energy!! OR the the meds help enough to take away some of the auxiliary symptoms and I can actually see pretty clearly. But it is VERY unpredictable, and I can’t tell how long the relatively good will last & I crash hard & am down for the count for hours.

  • Jim Flesher
    8 years ago

    I used to have them so bad at work that I would take time out and climb under my desk under my jacket to make it dark and hope it passed fast. Some days I was lucky. Most days I had to drive home with it and hit my dark room. Glad I stopped working finally.

  • Shell Gingg Romo
    8 years ago

    When I get a migraine it involves vision loss, speech disturbance and living in hellish pain until the pain meds kick in. Then all I can do is sleep it off. There is no functioning for me.

  • Carolyn Frazier
    8 years ago

    I feel like people around me doubt the pain I’m in because of how functional I can be with a migraine. I’ve learned how to function through the pain…so I can live life

  • Teri Robert
    8 years ago

    Shell, to be fair, there are times when I’m up and walking and can still function when I have a Migraine. Not all Migraines put us down for the count.

  • Jim Flesher
    8 years ago

    We should term it what it is, .. a Migraine Attack. Like walking through a gaunlet of full force baseball bats.

  • Crystal Davenport Cooper
    8 years ago

    I was told that if I thought positively and stopped being so negative (I get migraines about 3 times a week) that the migraines would stop. Then I was told if I still got them I could simply wish them away; that I was over medicating and making things worse. I was all like I’ve been dealing with these things for 20 years. I’ve tried all the tricks including completely detoxing (from pain meds, triptins, OTC pain meds, preventative meds, and herbal suppliments) for 6 months. People act like since they read an article they are experts. Or maybe they think we haven’t looked into our options. I promise, if it was as easy as thinking I won’t get a migraine, I would be doing that instead of having to choose between pain and vomitting or wasting even more money to get some pain relief. So that’s my frustrated book about it. Hope everyone is having a migraine-free day!

  • Stacy Leighty Stokes
    8 years ago

    Janis Nilson …”Have you seen a doctor?” I could be a doctor by now in both time and tuition, if only I didn’t have a migraine
    75% of the time!

  • Ardyth Hughes
    8 years ago

    Crystal Davenport Cooper: They don’t know what they are talking about. Most are simply ignorant and cannot imagine what a migraine is like. I’ve had the ‘displeasure’ of migraines for > forty years. About five years ago, I slipped in the shower and got a concussion; for the first time I understood what folks meant when they said “just a headache”. I never knew there was any other kind of headache except for a migraine until I woke up from getting knocked unconscious.

  • Crystal Davenport Cooper
    8 years ago

    Janis Nilson, I know, right?!?! Of course I’ve seen a doctor. So many of the judgmental people I know will go to the doc at the first sign of a sniffle but they expect me to just suffer while I grin and make cookies for everyone. It’s infuriating! I hate that you get them, I hate that anyone gets them, but it is nice to know that someone can relate to the crap I’ve been dealing with. I don’t often wish migraines on people because they are so awful, but there are a few people I know that I wish could experience it just one time. They would stop talking crap if they did.

  • Janis Nilson
    8 years ago

    Bravo Crystal…I felt as if you were explaining MY life. I agree with everything that you have posted. One more thing that is totally idiotic, is “Have you seen a Doctor about your headaches?” Uh….yeah, about 16 neurologists in my 41 years on this planet…starting at age 3. Thanks for sharing!

  • Jenifer Marie Calo
    8 years ago

    I was told to stop making myself get migraines. ok how can you make yourself get a migraine when you hate having them in the first place.

  • Sarah
    6 years ago

    Good question. We would be-what’s the word, masochistic? -If we wished such blinding, searing, crushing, nauseating pain on ourselves. So as we can’t wish them to come, we can’t wish them away (mores the pity). And unfortunately we can’t wish them on the judgemental idiots-medics included-who don’t have a clue either. Damn! Lol. X

  • Cynthia Royse
    8 years ago

    I actually prefer victim. It’s what I am and sometimes make ignorant people realize how serious it really is. It’s just when people ask the same questions everyones been listing here is what really bothers me.

  • Suzie Zamory
    8 years ago

    People who don’t have migraines, don’t know the pain…so instead of griping about them not understanding, sit down with them and MAKE them understand that it can alter your personality, that at times you cant speak, see or even blink without pain. After graphically explaining to people, like my husband, what I am experiencing, the insensitive comments stopped.

  • Anita Boyd Tinnerello
    8 years ago

    I get “Did you take something?” when I wish I would get “Can I do something for you?”. I get “I thought you just had a headache.” when I wish I would get “God bless you, not again!” I get “Oh, I’ve had a headache too, (now those are the ones I want to punch in the face, the ones that compare a regular headache to migraines). And probably the worst, the people that look at me like I have 5 heads and say, “Good Lord, you need to see somebody about that!” when I see a neurologist every 6 months and do everything she tells me to do. What we want is understanding and sympathy for what we have to go through, but I try to realize that they just have no idea what it is like.

  • Debora Cloutier
    8 years ago

    Anita Boyd Tinnerello Well I guess they will know who they are now…sometimes they need to be hit directly to get it!

  • Anita Boyd Tinnerello
    8 years ago

    Thanks, Kathy, I’ve had a about 4 weeks without one and that’s GREAT for me! I’m on a migraine blog and didn’t realize this is posting to my page and everyone can see it!

  • Kathy Tinnerello Turner
    8 years ago

    I hope you find something that works and you feel better soon!

  • Marietta Johnson
    8 years ago

    I hate people, even before they say Hello to me, making a comment about whether or not I am wearing my sunglasses inside!

  • barb
    6 years ago

    It helps me, inside or out. Luckily (?) I work outside and am not trapped with florescent lights all the time and wear hats outside.

  • Sarah
    6 years ago

    I never thought of that. Does wearing sunglasses work? X

  • Laura Price
    8 years ago

    the worst comment I recieved was in grad school (for counseling) and one of my “friends” asked me: “what is the headache doing for you?” grrrrrrrrrrr – dummy.

  • Debbie Dobbins
    8 years ago

    I get the sarcastic “…you always have a headache.” as if I planned it and do it on purpose. It hurts both figuratively and literally.

  • barb
    6 years ago

    Yes!! This one, and “are you sure you have a headache?” bother me the most. I’m not a liar and I’d much rather work/have a life than be in bed at home. Again.

  • Sarah
    6 years ago

    Yep, my niece threw that one at me this week! I replied, “yeah you’re right there, my head DOES always hurt-but it’s a migraine and not a headache!” I also had to explain that I don’t go around saying “excuse my behaviour, I have a migraine/fibromyalgia”, as I was accused of always going on about it-which is totally untrue by the way. X

  • Newdancerco
    6 years ago

    I always want to say “no, really? I had no idea I was in agony so often!”
    As if I don’t KNOW how often I hurt!

  • Allison Glover Brochu
    8 years ago

    Especially when they put air quotes around the word ‘headache’ – as if I weren’t telling the truth!

  • Shannon Ritter Coker
    8 years ago

    I agree with Jana, I hate when my husband asks me if I’ve taken something for it! I have to explain constantly that nothing works so it makes no sense to put drugs in my body for no reason.

  • Jana Thomas
    8 years ago

    People always say did you take something for that? That drives me crazy.

  • Rae Sawyer
    8 years ago

    I have heard this one many times. How’s your head Rae? I’m about at a 6 on the pain scale. Oh, at least your not at a 10.

  • Debora Cloutier
    8 years ago

    Shari Tuyls Mcguire Tylenol number 1 with codiene also known as Tic Tacs ~

  • Janis Nilson
    8 years ago

    Be careful Shari with the Excedrin. I did the same thing as a teen, then in my 20’s developed sever stomach ulcers that would not heal. I ended up having to have surgery where they removed just about half of my tummy because it was so severely damaged from N-saids and Excedrin in my early years. I know they are one of the only things to help…and I STILL reach for 2 if it gets really bad…but just know our bodies can only take so much! Thanks for sharing!

  • Shari Tuyls Mcguire
    8 years ago

    people have no idea what it is like to have a migraine, i eat exedrin like it is going out of style, now im addicted to it

  • Marietta Johnson
    8 years ago

    At least you aren’t at a 10??!!!! That is, oh I just can’t even classify it, I don’t even know a word that bad!!

  • Shari Tuyls Mcguire
    8 years ago

    take tylenol? that wouldn’t even begin to touch it!

  • Dan Levesque
    8 years ago

    Tylenol? really? Just give me a roll of candy ROCKETS. Just as effective.

  • Marietta Johnson
    8 years ago

    Yeah.. when I was younger and first dealing with the migraines…. I took Tylenol. I thought Tylenol was safe, etc…. and I basically took enough Tylenol to dull the pain enough to get through… that meant taking about 4 grams of Tylenol, along with 3-4 grams of ibuprofen, some caffeine in the form of No-Doze and maybe throwing in some aspirin or benadryl, or meclizine/dramamine depending on other symptoms, and whether I needed to get some sleep or needed to be awake. Basically I am saying that the whole “take some tylenol” can be very damaging!!

  • Barbara Collins
    8 years ago

    I hate when people say “oh, you have a headache?”

  • Marietta Johnson
    8 years ago

    usually followed by “again”

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