The Word Headache

It’s not just a headache. This sentence has been a rallying cry for the last several years in the migraine community, fighting against the idea that migraines are simply bad headaches that we are somehow too weak to tolerate. The stigma surrounding migraine disease is pervasive. It is perpetuated by pain reliever ads (the recent Excedrin #DebateHeadache campaign for example); movies and TV shows; a history of misguided doctors discussing “migraine personality” and that they afflict mostly stressed-out women trying to have it all; as well as eye-rolling colleagues, dismissive ER physicians, and countless others. Recently, we have tried to stop using the word “headache” when describing our illness, except to list it as one symptom of many.

As a child and teen, I knew my headaches were migraines, but I called them headaches and so did everyone else (many of our grandmothers called them “sick headaches” which seems a fairly apt, if simple, description). When I became an adult and my always-severe migraine disease became even more so, I still called them headaches. Somehow it always flowed more easily off my tongue, and my friends and family did understand that they were migraines and that they were quite serious and involved more than my head. I was lucky; I didn’t feel minimized. Of course I had my battles with doctors, teachers, and employers, but they weren’t frequent, and would have occurred no matter what I called the very bane of my existence.

And then twenty years later came the dawn of migraine awareness, at least as I know it. The advent of social media and blogs allowed for unprecedented world-wide communication among people with migraine, and we no longer had to search for rare local migraine or pain support groups and go sit awkwardly in person, which is of course difficult anyway when chronically ill. Most of us simply suffered alone. Even with empathetic caregivers and friends, there is something different about talking to people who really get it. Because, all of a sudden we could get support from 20 friends going through similar difficulties, almost instantly, while lying in bed in the dark. Campaigns like Migraine Awareness Month spread knowledge about the national toll of migraine: over 36 million Americans experience them, and worldwide, it is the 6th most disabling condition (years lost to disability). Facts circulate about the days of productivity lost, and the paltry amount of funds designated for migraine research. And, of course, the fact that migraine is not just a headache.

All of this is true, and yet I still find myself using the word “headache” nearly as often as I use “migraine,” which some of you may have noticed in my previous articles. Because the words were always fairly interchangeable during most of my life, and I don’t personally have any negative association with the word headache itself as it was never used to dismiss or minimize my situation, it is a hard habit to break. Part of this may be because of the broken record feeling Anna Eidt described in an excellent recent post and wanting to vary my vocabulary. At home, I tend to use “headache” when the migraine is fairly mild. This helps John and I communicate more quickly; if I say “I’m getting a migraine” he knows that this will be a tougher one to deal with.

There is also the fact that migraine isn’t the only headache disorder. There is also cluster headache and trigeminal neuralgia, both exceedingly, excruciatingly painful illnesses, just to name two. So certainly not all non-migraine headaches are mild or easily treated. In fact, all headache disorders together become the third most disabling conditions(s) worldwide as far as years lost. Some of my migraines actually are very cluster-like in nature, and I because of this I was prescribed an oxygen tank to keep here at home, though I rarely need it (the last migraine I would consider close to a cluster in severity was in May 2014). Using the word “headache,” then, could be seen as being more  inclusive of the entire headache disorder spectrum, and none of those, regardless, can be considered “just a headache.”

Finally, I do have to admit that there is a smidgen of wanting to downplay my pain, sort of the closest I can get to saying “I’m fine”. I mentioned that the word headache is easier for me to say, and that is because in some situations, when I utter the words “I have a migraine,” I am afraid it will look as though I am seeking attention. I know it is self-stigmatizing and incorrect to give in to this worry, but it is an emotional reaction I haven’t been able to banish. Of course I absolutely do not believe that other people with migraine are exaggerating or looking for sympathy when they mention they suffering from one. So why would I feel this way about myself? In fact on Facebook I publicly share so many graphics, articles, and posts about migraine, including personal ones about my own suffering, that I imagine many people have unfollowed me. And when I am explaining to someone that I have the illness, I always call it migraine rather than saying “I get bad headaches,” particularly when I know I might be able to educate them about the disease. It’s only when I have a migraine, in the moment, that I sometimes choke on the more accurate word.

For many of us, myself included, head paid is the most significant migraine symptom, the one that brings us to our knees and drives us to seek relief at any cost. I had very rarely experienced what I now call low- or no-pain migraines before my CGRP studies, but now they occur occasionally. Sometimes after a few days of nausea, fatigue, fever, vertigo, allodynia and irritability the pain will hit. Sometimes it never does. However, there are many people who suffer from ocular migraines and other varieties that are quite scary and serious but don’t have the head pain symptom at all. Using the word “headache” indiscriminately to describe migraine does a disservice to those people, and to all of us who can’t just pop an aspirin and never look back.

Words are very important. The way we describe ourselves and our illness not only reflects on us as individuals, but our community as a whole. At my last ER visit, the kind PA asked “When did this head-” She caught herself, “…migraine start?” And I really appreciated her effort to use the more appropriate term. I imagine I will continue to occasionally use the word “headache” in some situations despite all this, but I will work on being kinder to myself and not minimizing my own pain and my illness as a whole. What about you? How do you talk about your migraines? Feel free to share in the comments.

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31 comments on “The Word Headache

  1. Luna says:

    “When did this head-” She caught herself, “…migraine start?”
    Even that terminology isn’t correct in my way of thinking.
    “…there is something about the brain of someone with migraine disease which is fundamentally different, even when an attack is not happening).”
    We have the disease/disorder of migraine when it manifests it is a migraine attack. What do you think? I’m being picky.

  2. Elizabeth Roberts-Zibbel moderator author says:

    I do see your point, Luna! We have migraine disease always, so better terminology would be “when did this attack start.” Very true! Thanks for your comments!

  3. Migraines is my always term and one of the symptoms is head pain.
    I probably had my first migraine when I was 13 or 14 not too long after I first menstruated. Those around me had me convinced it was PMS but it usually hit once I was almost through my cycle and included way more symptoms than I had heard PMS involved. We treated the head pain and not cramp “cramps” with Tylenol and Ibuprofen. When I was 16 and had the ability to get myself to the Family doctor (PCP) I was told I had migraines. By this time they weren’t just surrounding my cycle. The doctor ordered some MRIs and other test but once he did not see any damage to my brain he basically told me to keep take the Ibuprofen previously prescribed for a knee disease and Tylenol on the really bad days. After the birth of my first it got worse. I had to drop out of college and couldn’t hold a job. I got shots on the very hard day’s and latest in the dark til they passed. I still thought they were just bad headaches. Eventually I just relegated it all to headaches because in 1998 I was diagnosed with another invisible illness, Fibromyalgia. Just like with migraines back then it was controversial in the medical community. My migraines were rolled into the diagnosis and called bad headaches and treated as such. Then one Friday this past July I had head pain that put me on my knees in the middle of the grocery store and was followed for 3 days by muscle weakness on my left side and eventually my speech was affected. That’s why I no longer refer to my migraines’ head pain as anything other than migraine and the one symptom I call head pain.

  4. Elizabeth Roberts-Zibbel moderator author says:

    Lukithia- you have been through a lot. I know fibro is also really painful. 🙁 thanks for being here and sharing your story with us.

  5. qif8v2 says:

    Hello…….it is truly sad how many of us suffer from Migraines. I actually had a co-worker who said people she knows (includes her too) say that it is ‘mind over matter’. I just about blew my top but my head was hurting so bad………I just had a stunned look on my face. It is bad enough living with this condition and trying to cope through life without those type of comments. All the best to you all and let’s hope things get better for us Migraine sufferers.

  6. DonnaFA moderator says:

    Hi qif8v2, I’m sorry you had to deal with that kind of intolerance. It’s difficult when people have little or no empathy nor the desire to develop some in the face of suffering.

    Please know that we’re always here when you need to feel community, or just to be understood. We’re glad you’re here. -All Best, Donna ( team)

  7. I have diagnosis and symptoms of several “invisible” illnesses. Since I was about 11 people have downplayed my pain and discomfort. I completely understand you wanted to blow your top. I have been told everything from it’s mind over matter and I need to just suck it up and push past it by those closest to me like my mother and ex husband. Now, that many of those people including my younger sister and older brother who have medical conditions of their own that takes them to a level of pain they thought I made up in my head, etc they are apologizing and saying they know what Oean when I say on the pain scale their 5 is my one. Praying you get some relief.

  8. chipdooley says:

    I NEED HELP PLEASE!!! Found out I had stage 4 cancer last December. I have suffered from chronic MIGRAINES since hurt at work in 92. I beat cancer using concentrated cannabis oil and helping with migraines. But I have to do 20 day’s in a hyperbaric chamber 3 to 5 times a week. I have had sever migraines where I could only do 1 or 2 a week and pain is sever. Need 5 more then they can work on my teeth and then another 10 day’s in hyperbaric chamber. Does anyone have any idea’s what I can do for relief, I have pain meds and cannabis(That helps the best) but the pain is that bad I can’t figure any relief what so ever.
    HELP if can, Please.
    Be Well and Thank you

  9. Hello Chip. The only thing I can think of to add is maybe changing your diet if you haven’t already. I have read and heard some promising info about going gluten and sugar and processed food free. I can’t afford to do so myself cause it’s hard enough feeding the seven of us and working around my son’s food allergies as much as possible. I’m still in the process of getting my medication doses managing the pain and discomfort to get back to the 5 O can rest at. Migraines beat out ally other issues right now so I can imagine the same for you. It’s really hard to concentrate on healing anything when the migraines take over a majority of the days. Praying for you.

  10. Dizzy1i says:

    Migraine is NOT a headache; scientific literature supports this statement firmly. Any neurologist who doesn’t know this fact today needs re-education (and many do). My migraines have no pain, but during their activity I cannot even crawl to a bathroom. Before my neurologist found the first effective drug cocktail treatment, I experienced migraines with a frequency spanning 6/month to 5/day–all painless, all with debilitating vertigo. Today, I am fortunate, as I suffer acute migraine about 1/year, but from experience I know that drug cocktails can eventually lose efficacy, so I pay careful attention to new treatments.

    So, I never say headache; I only say “migraine”. Words are very important, and I worry that the terminology that reduces migraine to mere “headaches” will also limit the development of effective treatments or may slow diagnoses of new migraine cases.

  11. Elizabeth Roberts-Zibbel moderator author says:

    Yes, 100% agree with you. Thanks for being here Dizzy1i! ~elizabeth

  12. Kara says:

    Words are incredibly important! I am just as guilty of using “headache” to describe my level “7” migraines but when they are higher on the pain scale, I usually use the word “migraine”. What is sad in my opinion is that it is that time of year (always falls around the holidays it seems when you tend to feel that much more isolated), that I am fighting to keep my disability since I have to PROVE that I am disabled. Which is greatly annoying as well as exhausting. If they would just understand that I won’t magically wake up one day without this illness, which is how I feel they treat me when I have to fill out the mountains of paperwork and deal with their phone calls that wake me up, my world would be a little bit better. I never wanted to have this nor do I wish this on any other person in the world. I just don’t understand why the majority of the people do not understand that this doesn’t go away. I have tried everything. I am one of the few that has daily migraines, from when I wake up until I go to sleep, non stop & never ending. I take my meds properly, yet they treat me like I am a major drug addict. If it wasn’t for this website and seeing what others are going through, I don’t know what I would do. Thank you for the article. It inspired me to write this little rant. Keep up the great work!

  13. shawnhensger says:

    thank you for this site I was able to find a neurologist who will see me at a moments notice and provide me with treatment and care but notices that when he doesn’t see me at least once a month he personly calls me to make sure that I’m ok or to see if I need a nerve block when the weather is changing.

  14. Joanna Bodner moderator says:

    Hi shawnhensger,
    This is amazing to hear and thank you SO much for taking a minute to share this! I am so happy to hear that our site has served as a good resource for you. It is so challenging for so many to find effective treatment and/or a healthcare professional and I am thrilled to hear that you have found a great one! Thanks for taking the time to share. -Joanna ( Team)

  15. Tamara says:

    I constantly struggle trying to get people to understand why its not just a headache and its the other symptoms PLUS the headache that makes it so miserable. Even when my pain meds work on the pain itself – sometimes I’m still bedridden because of the dizziness, nausea, mental fogginess, exhaustion and joint and muscle pain. Heating pads/ice packs and essential oils only help so much on those other symptoms as well. The joint pain tends to be the one that kills me – its so severe and literally pulsing pain in every joint that can be as severe as the head pain. Glad I’m not the only one with the struggle – and with it being chronic and getting worse … I lack the energy to try and explain.

  16. DonnaFA moderator says:

    Hi Tamara, thanks for being part of the community and for joining the conversation. As you can see, you’re absolutely not alone. Small comfort, I know, but please know that we;re always here to share support. -All Best, Donna ( team)

  17. Elizabeth Roberts-Zibbel moderator author says:

    Thanks Tamara <3

  18. Luna says:

    Over the years I have gone from very episodic short migraine attacks to still episodic 5 day extreme attacks then to chronic. A couple of years ago I started being “in migraine mode” most of the time with 2-3 per month attacks. This changed to silent migraines that come and go every day. Don’t usually have real pain but many other symptoms that change with the wind :). Some worse than others. People that I know understand migraine with head pain but silent migraine with it’s many weirdities is much more difficult for them to understand. Most of it I can’t even explain so how can they understand. I feel it but don’t have words for it. Mild to extreme discomfort in the head, neck, shoulders and spine. I wish someone with the ability to articulate could relate in writing more of the silent migraine symptoms. Wish this screen wasn’t so bright.

  19. DonnaFA moderator says:

    Hi Luna, my sympathies! I had my first silent migraine ever when we were on vacation and it had to have been one of the absolute worst experiences of my life! It is so difficult to describe.

    I did have to smile at that last sentence. Many times I have my screen down as far as it will go and catch myself trying to turn it down further and it still feels like daggers. I’m sending all good wishes that you get some relief soon. -Warmly, Donna ( team)

  20. Luna says:

    I had too much fun on Saturday and now is payback time.

  21. Elizabeth Roberts-Zibbel moderator author says:

    Hi Luna,

    Since being in the CGRP trials I have begun experiencing many more no-head pain migraines. I mentioned it in this article, but now it is six months later and my head pain has gone down even more. However nearly every day I struggle with all those other symptoms. It’s so frustrating. Thanks for being here, as always! ~elizabeth

  22. LizzyMell says:

    One of the most concise articles I’ve read that explains what it is to live with migraines: “Nine scary things we learned about migraines from someone who suffers from them” Thanks to the BT Group for publishing it. My only wish is that they did not use the word “scary” in the title. That term implies a passing emotion. “Chronic, overwhelming, dismaying, dreadful or daunting” would be better adjectives. The language we use around the topic of migraines is important as we try to increase awareness. I’ve been dealing with it for 35 years. It’s so hard to explain to others, who want to hear us say “there is a pattern, there is a pill, yes I feel better.” Trust me, we want to tell our loved ones and coworkers that “it’s over now,” and sometimes we do, because we feel tremendous pressure to make those around us feel better about our illness. We know our condition brings you down.The few times I have revealed some of my triggers to family and longtime friends, I have been laughed at and utterly discounted. The truth is, we live with randomness, powerlessness and stigma. The strength that it takes to get out of bed on bad days is only surpassed by the strength that it takes to enjoy the good days. Thanks to my doctor, Bill Young @williambyoung59 and @JeffHeadacheCtr for addressing not only the clinical part of the illness, but the stigma around it.

  23. wjmckinley says:

    How does anyone find the strength to enjoy “the good ones” ? Here is for wishing for one of those “good” days and hoping I can enjoy it if and when it occurs. Can’t remember having a good day in so long have almost given up all hope of seeing one in this life. Only hope I am holding fast is that this illness does not continue after I die.

  24. Elizabeth Roberts-Zibbel moderator author says:

    LizzyMell, thanks so much for your comments. I’ve been suffering about the same number of years as you. “randomness, powerlessness and stigma.” YES. Sorry it took me so long to respond.
    All the best,

  25. Klm18 says:

    I really struggle to explain my migraines because I often don’t get a ‘headache’ as such. I went undiagnosed for years with GPs constantly telling me I had a virus and to let it pass. Days of vertigo like symptoms, confined to bed or couch unable to walk more than five steps without debilitating dizziness, nausea, sensitivity to noises and feeling disconnected from my limbs. I always got headaches and sometimes migraines (with pain), but was unaware that migraines don’t have to have head pain attached. Unless someone sees you clutching your head in pain, I find trying to explain I am suffering from a migraine without the headache is received with a blank look and doubt. Everyone thinks of a migraine as a really bad headache but they can involve so much more or not even than that.

  26. Elizabeth Roberts-Zibbel moderator author says:

    People definitely do get migraines without head pain. That type, like you said, is even harder to describe and to have taken seriously. Especially since you suffer from migraines with head pain also, I definitely think this sounds like the case. Sometimes with particularly uncomfortable migraines without pain I will try an Imitrex, which will often remove many of the symptoms for me! Thank you for being here and for your comment. 🙂

  27. CatKel8 says:

    Daughter has a treatment protocol at the local ER. Most of the staff know her as a “frequent flyer”, and by the time she gives up and goes, she is one of many on a “headache day”. She can be in and out in less than an hour most times. Once in awhile she gets a new doctor that goes through the whole “drug seeker-change your lifestyle” thing. Took three hours last week. She has chronic migraine, never has a pain-free day, and we are running out of options and hope. Looking for some fresh eyes and fresh ideas here. She calls her pain “the claw” and says it feels like someone is trying to yank her eyeball out. It has cost her jobs and a marriage and she is 39 and on disability (took forever), says this is no way to live. She’s a tough girl and has always been a hard worker, so she’s not weak or lazy. Toughs it out longer than she should because of the treatment she gets at the doctor or hospital. Frustrating.

  28. Elizabeth Roberts-Zibbel moderator author says:

    I’m so sorry about what your daughter is going through. It sounds very, very similar to my situation (43, chronic daily, on disability). I am looking at an ER visit tomorrow, I’m afraid. Hang in there, and we’re very glad you’re here.

  29. Soteria says:

    CatKel8 – I’ve posted this a few times on this site but would like to do so again because not everyone is familiar with the new studies. I am very similar in symptoms as your daughter and have dealt with this chronically for the past 8 years – same visits to totally unsympathetic/uninformed doctors and ER personnel, medication that is completely ineffective, daily debilitating pain, nausea, vomiting, inability to make coherent sentences, drive a car, affected my social life, job performance, etc. I joined a study in April of this year as a test subject for the CGRP antibody (without much hope of it really helping) and it has made a total difference – the number and intensity of the migraines has decreased dramatically. I don’t get them as half as often – they’re more annoyances than completely incapacitating and I haven’t been back to the ER since January. I am telling you this because I really had given up hope on ever going back to a ‘normal’ life. The CGRP changed that. My migraines no longer control my life and I feel like I am emerging from migraine hell. The number of people that have found relief from this substance is amazing the study doctors and pharm companies and there is a push to get this through FDA approval and on the market as soon as possible. Please google CGRP for more info. And please tell your daughter that there is hope.

  30. Kara says:

    I am in the same boat as your daughter. Tell her she has a twin in the world, as far as going through this horrible disorder.

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