Believing the lie

We’ve all heard it. Migraine is NOT just a headache. There are so many other symptoms we have to deal with. Sometimes it’s difficult to determine if what I am experiencing is migraine, something else, or nothing at all…especially if there is no headache. It is during these times that I question myself the most.

  • I blame apathy and moodiness on a character flaw without considering it might be migraine prodome.
  • When abdominal pain or nausea creeps in, I assume it is something I ate. I never consider abdominal migraine.
  • Fatigue and muscle aches are attributed to working too hard instead of blaming it on migraine postdrome.

I know I feel horrible. It shouldn’t matter whether I have pain. So why does all my confidence disappear when the migraine doesn’t include a headache?

Deep down there is a part of me that really believes the lie that migraine is “just bad headache”. It’s as if only that terrible pain is justification to relax and be good to myself. It doesn’t matter how many times I run through that long list of disabling symptoms that make up migraine. I still don’t slow down until my head starts to pound.

I know why. I’ve spent a lifetime thinking of migraine as “just a bad headache”. I am part of a large extended family full of migraineurs. None of us ever talked about any symptoms except “pain so bad it made me puke”. The focus has always been on coping with the pain. Everyone, including me, held the mindset that the absence of pain equaled feeling okay.

I know that isn’t true. I’ve experience debilitating symptoms that do not include pain. So why do I struggle to accept the truth? A lifetime of desperately trying to stop the pain still rules my thinking, beliefs, and behaviors. The cultural myth is ingrained in me. Breaking free is hard work.

Pain is more culturally acceptable than our other symptoms. It grabs our attention. It demands that we do something about it.  Society understands the concept of pain. There is no cultural equivalent for light sensitivity, vertigo, irritability, depression, or fatigue despite their disabling influence on a migraineur’s life.

We need to unlearn old ways of thinking about migraine and replace them with facts. We need to talk about the true impact of migraine over and over again until we finally believe it’s true. We must embrace the truth to the point that it changes our thoughts, beliefs, and behaviors. Only then can we begin to change the hearts and minds of society.

In what ways do you still embrace outdated migraine lies?

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

Comments

View Comments (18)
  • janie613
    4 years ago

    Tammy, just reading your article and the posts that followed brought me to tears. I guess I didn’t realize how much I still believe the lie even though I speak loudly against it. Like many others, I began with episodic Migraine. Several years ago it developed into chronic and systemic Migraine. It hurt to leave my job knowing my colleagues thought it was “only for headaches.” The guilt comes when I can’t be there for my family.

  • Garangwyn
    4 years ago

    I think the hardest thing for me is that my neurologist, who also experiences migraines, embraces the lie. I have come to accept what you said, although most of the people in my life still don’t fully understand; I have had episodic migraines for probably 20 years, but they became chronic about 3-1/2 years ago, and I have been on disability for two years. But I was diagnosed with FMS 15 years ago, so I had a head start on accepting the “invisible illness” issues that many people don’t understand. With the migraines, it’s only been worse.

    What I am dealing with now is that suddenly, for no apparent reason and without even having seen me or discussed it with me, my neurologist has decided he wants me to go back to work, and is planning to cut of my disability. I have no idea why. I have an appointment in 2 weeks, which is 2 weeks prior to the date he has put down as my disability termination date. After having 5 months straight of 15-17 migraines a month, then a “good” month of only 9 headaches (which he doesn’t even know about yet), I’m supposed to walk out and get a full-time job? And like you said…it’s not even the pain that is the biggest issue. It’s the fatigue; it’s the other indescribable symptoms that go along with it. It’s the photophobia, the phonophobia, the fact that it takes me sometimes 2-3 days to recover from a migraine. It’s the fact that I can’t even perform basic math any more without making errors that I don’t even catch; that after an hour of conversation, my word recall and cognition skills begin to fail me and I struggle for to find every third word. Who is going to hire…much less keep…an employee who calls in sick 2-3 times a week? Who after 10-15 minutes has to take a break because of the chronic fatigue?

    This man is “headache specialist”. If HE believes the lie, what hope is there for me in finding any doctor who will understand what it is I go through on a regular basis?

  • Kristin
    4 years ago

    Thank you so much for this brave outlook. I too have times where I get scares that my post drones or auras that appear without the headache are indeed something else instead of what they are. It’s been a long road of anxiety for me. Embracing the fact that it is indeed the migraine after ruling out every other possible cause has been what helped me the most. We as migraine sufferers, know the deal. People who think a migraine is a bad headache are just so uninformed it’s disturbing. The world needs to become aware of just how debilitating the other symptoms are- especially the neurological ones.

  • Holly H.
    4 years ago

    Some years ago, my migraines merged into one major migraine syndrome with complex neurological events. After a while, I also began recognizing all the various ways migraines exhibit, so started using the term that my migraines are for me “systemic” in nature along with headache. People who know me say that is a good term to describe the physical, emotional, cognitive, verbal, super-sensitivity to trigger stimuli, and aura (including A-I-W type) effects. Thanks for your encouragement to embrace what is true for our personal migraine situation and its impact on us. Like you indicated, consistent self-talk affirms that truth. I tell myself that this is, indeed, unusual and unfamiliar for most people, and the things people can say comes from that… But the truth is that which I know and that I experience on a daily basis.

  • rhonda shumway-luna
    4 years ago

    What is an abdominal migraine? I’ve never heard the term. Is migraine why my stomach is in such agony? I started the failsafe diet for head and tum. My tum has felt a wee bit better.

  • The Migraine Girl moderator
    4 years ago

    Dear Rhonda Shumway-Luna,

    Here’s an article where you can find information on abdominal migraine: http://migraine.com/migraine-types/abdominal-migraine/

    As far as stomach upset during a migraine attack, you are definitely not alone! You might find the following article quite enlightening (and helpful!): http://migraine.com/blog/migraine-gastroparesis-nausea-vomiting-and-diarrhea/

    Take care,
    Janet G., “The Migraine Girl”

  • Karen
    4 years ago

    My story is very similar to many of yours. I use to work full time and I only took time off from work when I actually had head pain and vomiting so bad to keep me in bed. I have had migraines for 37 yrs and they have increased to the point of not only being chronic but also increased intensity. I gradually developed body pains that was diagnosed as fybromyagia and my cognitive abilities got so bad that I could no longer remember how to do my job. (I was a CFO).
    I am now on full disability so I do recognize and acknowledge the non headache aspects of migraine. However, I think the reason I didn’t acknowledge the symptoms before – because I certainly felt them – was the guilt I felt for all the time I was already taking off just for the headache portion. I felt guilt for being behind, or for having someone else caring my load, or for missing a meeting, or for just being sick.
    For me, migraine always came with a lot of guilt and I didn’t want to add to that by taking more time off. I don’t think other more “visible” diseases carry that stigma. But then again, maybe they do……

  • janenez
    4 years ago

    I’m understanding a bit of what you are talking about. In the last year – the “cognitive difficulties” have become the single worst part of my migraines – which are generally chronic and many times lately “silent”. My work has suffered and I carry a great load of guilt about that. I have all the normal cognitive symptoms such as memory loss, using the wrong words, only being able to form half a sentence, bursting out in tears of frustration, etc. But, I’ve also gone “faceblind”. This causes great embarrassment because I work with hundreds of people over the course of a week and they expect me to remember them – or at least that I should remember that I know them. I’ve learned some “coping methods”, but if it gets worse – I’m going to have to make a change in my job. People just do not understand. Just like “it’s just a headache” – they will say “oh, I forget things too” – but it’s not just being a little forgetful.

  • The Migraine Girl moderator
    4 years ago

    Karen,

    Thank you for this thoughtful response. I wanted to especially address your comments about guilt. You might find these Migraine.com articles helpful (or at least you may find some solace):
    http://migraine.com/blog/letting-go-guilt/
    http://migraine.com/blog/guilt-trippin/

    Take care, and thanks again for the thoughtful post.

    -Janet G., “The Migraine Girl”

  • Evelyn C
    4 years ago

    Thank you for putting my feelings into words! I struggle so much trying to verbalize how much I question myself, how often I think I’m blowing things out of proportion or just imagining how bad I feel because the pain “isn’t that bad yet”.

  • SunupShutterbug
    4 years ago

    I too am guilty of believing that if I just push harder or ‘stop thinking about it’ my migraine will go away. I have bought in to the theory that it’s all in my head. At work when I can’t even read because of the floaties, I tell myself to go do something else where they won’t be such a bother. I never stop until the pain sets in. My neurologist tells me that my migraines are fairly severe (I take meds three times a day)…why don’t I listen to him instead of everybody else?

  • Jules2dl
    4 years ago

    When I was younger, working and raising my kids, I was never in tune enough to realize that my frustration, mood changes, etc., were actually prodromal symptoms. It was only after the pain hit that the light bulb went on.
    So I wonder if I had quit pushing myself to keep going, or if I’d taken a Cafergot (this was ante-triptans) maybe I could have forestalled the headache.
    I bought into the myth in that I’d always push unless I was in actual physical pain. I believe that this was a great disservice to myself, in that by not taking proper care of myself and resting during the postdromal phase, many a migraine came back as a result.
    I’m on disability now for my migraines, and I no longer fear each headache as I used to (who will watch the kids? Who will fill in for me at work?…). It is a tremendous blessing to know that I have the freedom to say “I need to stay in bed and cuddle my ice pack today”. Or to say “I’m exhausted from the last few days of bad migraines, I need to just take it easy today so the headache doesn’t come back”. Yes, I still miss family events, and I haven’t been to one of my husbands drag races all summer, all of which really bites. But at least my migraines are only a burden to me now, and not to anyone else.

  • The Migraine Girl moderator
    4 years ago

    Dear Jules2dl,

    Thanks for the thoughtful response. I myself need to remember some of your words of wisdom when I push myself and jump back into regular life before I’m ready: ““I’m exhausted from the last few days of bad migraines, I need to just take it easy today…” Well said!

    Take care,
    Janet G., “The Migraine Girl”

  • 4 years ago

    I definitely have a problem with this. Not only to I have these preconceived notions in my head, I project them onto others. So I’ll tell my husband that he’s the one who doesn’t really believe I’m sick when the truth is he believes it and I don’t (even though I know I am sick).
    I grew up with episodic migraines, I had people around me who suffered from migraines, and yet the stigma still managed to work it’s way into my brain. The idea that it could be “better it”, or “it’s not as bad as they think.” Everyday I miss work, every time I debating looking into disability, every time I miss an activity. I am my own worse enemy in this fight I think.

  • Linda K.
    4 years ago

    Thank you! Unless I’m throwing up (rare for me) or crying from pain, I tend to secretly tell myself that I really could get up and do what I “should”. How does one deal with feeling this day every day of your life? There are days I can sort of function but many that I can’t (or don’t want to, I say to myself). Sigh. Thank you for shedding light.

  • janenez
    4 years ago

    This is an excellent post. Thank you for sharing as it is helpful to know I am not alone. I’ve had these exact same kind of “shame” thoughts myself – quite a bit lately. My migraines have morphed lately from “Head pain” to more of the “cognitive issues”. It used to be the pain that kept me from being able to work at 100%, now it is severe forgetfulness, speaking in word scrambles and so many other cognitive and muscular symptoms that are not “headache” pain. I “look” fine to others – so why can’t I function? I am not “in pain”, so why can’t I think straight? The frustration makes me feel at war with myself. I am grateful to bloggers writers like you who let me know I am not the only one struggling with this.

  • Jo Chanin
    4 years ago

    I still think that after all these years I could have done something to prevent it.If I fight hard enough I can prevent it.

  • Lisa Robin Benson moderator
    4 years ago

    Thank you Tammy for sharing this! I also feel this way pretty often. It’s always good to highlight the other symptoms of migraine because, although the pain no doubt can be terrible, it is certainly not always the most debilitating, disorienting, or troubling! Wishing you well,
    Lisa

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