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What If Migraines Were Visible?

What If Migraines Were Visible?

This invisible condition that is migraine can make it appear as if we are totally fine when we are absolutely not.  On the outside, we seem completely normal. We can walk, we can talk and we even can appear to be firing on all cylinders. But from our view looking out, the world is pulsating in pain with every heartbeat. With eyes burning, we are nauseated and on the verge of vomiting.

The dichotomy between how someone with migraine looks on the outside and how s/he feels on the inside has me thinking: What if migraines were a visible condition? What would a migraine actually look like?  I’m sure each of us would have our own way of describing the physical embodiment of the condition. One thing is for sure, it would be terrifying to behold.

On the other hand, maybe I am not the only one who feels like my eyes are on fire and my face is melting. I’ve heard others describe stabbing pain through the neck and head.  More graphic descriptions include an ice pick or railroad tie lodged through the eye or base of the skull. Others share a sense that their brain is either imploding or exploding. Picture, for a moment, encountering someone actually experiencing any one of these things.

Seeing It

Ironically, making migraines a visible condition would have many positive ramifications. Imagine if you encountered someone in the grocery store whose eyes were bleeding. First, we could easily identify fellow migraineurs and come to their aid with compassion and assistance. Identifying others who have migraines would help to decrease feelings of isolation. We’d be able to see just how many people are affected by the condition. Visible signs would also provide many opportunities to educate the public about the condition. People would ask “Why do you have an ice pick sticking out of the back of your neck?” and we’d be able to inform them that we are just one of 36 million people who suffer from migraines.

Feeling It

The aforementioned examples simply illustrate the pain we are experiencing, but that is only part of the puzzle. Demonstrating the extreme impacts of migraine on the senses would help to complete the picture. If we were to stick with the example of the grocery store, what if there was muzac blaring and flashing florescent lights to all the people in the store any time a person with a migraine walked in? And what if large blowers sent intense fragrances of the slightest smells throughout the aisles so others could experience our reality?

Not Faking It

If people could see and experience migraine pain and its related symptoms, the migraine landscape might change.  One thing’s for sure – if people could see the level of pain we are in, any insinuations of malingering would simply melt away.  Instead, people would flock to our sides to lend a helping hand. Our bosses would probably ask us to go home. And perhaps most importantly for a long-term solution, desperately needed research funding would come flowing our way.

If you could make your migraine visible, what would it look like? Do you think it would help others better understand what you are going through? If so, how and why?

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

  • NAf0ster
    8 months ago

    I can easily draw the painless aura I see for 16-20 minutes before the onset of a somewhat ethereal 5-10 minutes of clear vision and 24-hours of having my head compressed and crushed by an invisible vice for 24 hour. It has been the same since migraines started at the age of 9 years. I am 66 now. I have a sleep disorder due to being sleep deprived as a child. The aura resembles a pulsating, C-shaped strobe on one side, but not one eye, that starts very small, then grows to the point where direct vision is obliterated but peripheral vision is intact. This starts to fade after reaching this point. The C-shape hallucination comprises regular geometric wedges of shimmering, hyper-coloured navy blue, orange and silver light. The good news is that I learned how to avoid the 24 hours of searing pain. If anyone has similar, predictable symptoms, I might be able to help.

  • Holly Baddour moderator author
    4 months ago

    What an amazing visual description of something so sensorial. It sounds actually somewhat beautiful. Thank you for sharing this and for the offer to be of assistance to others.

    So glad to have you as part of our community.

    Please stay in touch.

  • SPupp
    8 months ago

    On some days, I imagine being followed around by Maxwell of the Beatles’ “Maxwell’s Silver Hammer,” getting hit relentlessly by that fictional psychopath, while wading through a river of molasses in a dense fog.

    Before eventually being forced by migraines from the best job I’m ever likely to have, I was lucky that a fellow employee could tell I had a migraine coming on, sometimes even before I was aware of it myself. She would come into my office with one of my doses of Relpax, telling me “you’re going to need this.” I asked her what gave it away. She said “I can see it in your eyes,” but could not provide further details. Kindhearted, perceptive soul.

  • Holly Baddour moderator author
    8 months ago

    I can relate to the river of molasses statement- what a great visual and sensorial descriptor. The body, in the days during and following a migraine, can feel so sluggish and heavy: https://migraine.com/living-migraine/chronic-bodys-slow-leak/

    And yes, it’s in the eyes. Such a universal truth there: https://migraine.com/living-migraine/visible-symptoms-showing/

    Thanks for joining the conversation and being a part of our community!

  • lslawler
    8 months ago

    We should all be Migraines for Halloween!
    What a statement that would be. Maybe even have a contest. Blessings to all who are reading this to find empathy.

  • Holly Baddour moderator author
    8 months ago

    What a great idea! That certainly would be ghoulish, given the descriptions that follow! I like the thought of applying creativity to something that is so depleting. Thanks for sharing such a unique thought! Any takers?

  • AZReynolds
    8 months ago

    Thanks for your chuckle of seeing us walking through the stores with ice picks sticking out of our eyes. Yes, mine resembles the icepick, but mine is a red hot poker. Other times a red hot ax pick splitting one side of my head, usually the right side. Milder ones are jumper cables pinched on my eyebrow and still plugged into a battery. Bleeding eyes, lol. It would be nice to see their reaction to that one! Which reminds me of Halloween costumes I have seen that do just that!

  • Holly Baddour moderator author
    8 months ago

    Another community member just suggested that we all dress up as Migraines for Halloween! Given the descriptions that we’ve received here, we’d certainly be a terrifying group. Love the eyebrow-pinching-jumper cable visual. Spot on, unfortunately.

  • mskatiedid
    8 months ago

    When I have a migraine, particularly one which has been rocking for a few days, it feels as though something in my brain is pushing to get it. I’m drained of energy. Totally. My scalp feels as though it been fileted from the base of my neck to the top of my head, with a large gaping wound that cannot be touched.

  • Holly Baddour moderator author
    8 months ago

    Thank you for this rich description. The energy drain you describe is one to which many of us can relate- almost like having the flu: https://migraine.com/living-migraine/chronic-bodys-slow-leak/?r=

    The scalp pain sounds like allodynia: https://migraine.com/blog/migraine-comorbidities-cutaneous-allodynia/

    So glad you chimed in yet sorry to hear you have these symptoms as they are very challenging to navigate. You are not alone, though- and we are happy you are a part of our community. Stay in touch!

  • Cappucinno
    8 months ago

    Well this is one that I have thought about for a long time. First thing is that my husband claims that my face gets a grey color to it and of course my eyes are squinty. My description is that there is a rubber band in my (usually right) temple that is being twisted and wrung as tight as possible while a red hot pointed steel poker is being jabbed into the temple at the same time; my whole head is being squeezed between a large vice where it feels like it could either implode or explode and lastly my eyes and eye sockets are burning like fire. Of course, at this point the projectile vomiting is on its way. These symptoms have happened to me many times throughout 40 plus years, thankfully they are rare these days but any migraine/headache I do now get makes me think of those horrors.

  • Holly Baddour moderator author
    8 months ago

    Gracious sakes- you HAVE given this some thought. I can almost feel the migraine coming on just reading your words. Very grateful that you took the time to share this as these are visuals to which many of us can relate. We often talk about how hard it is to get others who don’t have migraine to understand what the pain and related symptoms are like. Your powerful post brings us a step closer. Thank you.

  • LeilaniRL
    8 months ago

    If people could see my migraines, they’d see an ice pick or a pencil stabbing my left eye socket and left temple. The back of my head would have burns, and sometimes the front right side of my head would be collapsed in. There’d be bugs crawling on my right hand, then they’d travel up to my face around my right side of my lips. They’d keep crawling for hours.

    There’d be people yelling Latin and foreign languages all around me. Signs would be blurred and in some kind of foreign language that would translate itself only after looking at it for minutes.

  • Holly Baddour moderator author
    8 months ago

    Wow! Powerful and great comment.

    The mention of the back of your head having burns is so spot on for those of us who spend days with ice packs applied to that very spot.

    And, I think you may have come closest to capturing what it’s like to have aphasia as anyone I’ve seen thus far.

    For those who don’t know what aphasia is: https://migraine.com/blog/what-happened-to-news-reporter-serene-branson/

    Thanks so much for sharing. So glad you’re a part of our community. Please stay in touch!

  • Kmglenn
    8 months ago

    I’ve used a movie reference to get my husband to understand my migraines. I tell him my eyes feel like the eye of Sauron looks, and pulsates like it too, and the marching of all the armies is on top of, and inside, my head. Ever since I started using these as my descriptions people seem to get it… seems silly, but it works.

  • squeak
    4 months ago

    I’m going to have to use a variation of this! You managed to combine my favourite movie PLUS my migraines in one! Genius.

  • LeilaniRL
    8 months ago

    I’m going to steal this one. It’s perfect.

  • JustJames73
    8 months ago

    I’m lucky that my boss is a fellow sufferer and knows when it is severe, also means that he knows if someone is faking it. I do think that we have tells during a migraine, but only we can see them in others. Shuffling walk or guarded movements, head in hands, sunglasses indoors, winces when over stimulated, difficulty maintaining a conversation…

  • Holly Baddour moderator author
    8 months ago

    You are indeed lucky to have an understanding boss. It’s unfortunate that it takes someone experiencing migraine to have compassion for the condition.

    And you’re so right. There are a few “tells” that are nearly universal. The eyes, for many of us, can be like windows into migraine activity. https://migraine.com/living-migraine/visible-symptoms-showing/ Then again, no two migraineurs have the exact same combination of symptoms.

    Thanks so much for chiming in! Glad you’re a part of our community.

  • pennych
    8 months ago

    Interesting article. It’s difficult for coworkers to understand, especially when i have a job that requires standing on my feet/customer service. All i want to do when i have a migraine attack is lie down in bed. Others think all i need to do is take Tylenol and the pain will go away…not that simple.

  • AZReynolds
    8 months ago

    Isn’t it maddening that people who can take a Tylenol or Excedrin and get relief believe that the rest of the world should be able to do the same!! My sister had her first migraine in over 40 years. She had forgotten how horrible they were. She called me up to apologise for not understanding more. So maybe the whole world needs to suffer one once in awhile just to make them understand better. Not that I would wish migraines on even an enemy. Just saying it would be nice if they could understand us.

  • Holly Baddour moderator author
    8 months ago

    This is a conundrum so many people are talking about on migraine.com. How to help others understand and have compassion if they’ve never had a migraine attack themselves. This invisible disease makes it nearly impossible for others to “get” the severity of it.

    I sometimes send links to articles about migraine that resonate with me to my friends, coworkers, and family members in hopes of helping them better understand what I’m up against and that I’m not the only one who has it so badly. Raising their awareness and educating them on the topic definitely ends up benefiting me in the long run.

    Stay in touch– glad you’re a part of our community.

  • nem360
    8 months ago

    If people could see what my physical pain was daily I think they would wonder why I bother getting out of bed. For one my joints are overlaxed (thanks EDS) so my muscles work OT to keep my from dislocating everything and then throw in my migraines usually 2-3 times a week and basically I got blind in one eye the temples feel like my head is being squished, my eyes feel like they are just soft mushes and the radiating pain from the back of my neck up and around to my clenching jaw would flat out make people vomit and sometimes it actually makes me vomit. So yeah if my physical pain behind my overly caffienated smile were visible life may be explained easier.

  • Holly Baddour moderator author
    8 months ago

    What a compelling visual. It sounds as if you are carrying a heavy load with migraine and other health challenges. That migraine is invisible makes it so difficult for others to give the compassion we need. I’m so glad you’re here and a part of our community where we all give compassion easily because we understand what it’s like to live with this complex neurological disease. Please stay in touch.

  • MidrinMan
    8 months ago

    Some chiropractors have a tool that measures muscle tension. The needle arcs to the right depending on the severity of tension. This guides them on where to make adjustments and tension is released. There are also fields of science where electromagnetic fields are being studied from people’s brains and the theory is, certain frequencies are associated with certain thoughts. Pain, happiness, sadness, love, etc. I would LOVE to see some neurology research from some universities either here or abroad in this arena. We can study gamma rays in solar systems millions of miles away through massive telescopes, yet we can’t have Dr. Bones pull out the tricorder, have it whistle over us and give us empirical data on where it hurts. I of course simply point to it. (low tech) Yet, the doctors still seem baffled.

  • Holly Baddour moderator author
    8 months ago

    Such a good point and your underlying question – regarding why there is not more attention being paid toward the field of migraine – is baffling to many of us given the numbers: https://migraine.com/living-migraine/what-must-we-do-to-get-attention/

    Thanks for sharing and for being a part of our community! Stay in touch-

  • Laura
    8 months ago

    My coworkers, who knew better than family, always knew by looking at me when I had a migraine. They said I even walked differently. But only they knew. I’d hate to imagine it being visible to everyone.

  • Holly Baddour moderator author
    8 months ago

    Isn’t it fascinating when others can see our migraines, sometimes before we (or in your case, our loved ones) can. They really can show themselves in wild ways. You might find this article of interest – on this very topic: https://migraine.com/living-migraine/visible-symptoms-showing/.

    Thanks so much for sharing! Glad you’re a part of our community.

  • Laura
    8 months ago

    My coworkers, who knew better than family, always knew by looking at me when I had a migraine. They said I even walked differently.

  • absentminded
    8 months ago

    What an amazing article. If my chronic migraines were visible, people would see a little black demon sitting on my shoulders, like those dancing monkeys. It would have incredibly sharp, long nails that are stuck brain deep into my temples, eyes, ears and neck. My eyes would be either black and blue or bleeding from pain.

    During my migraines, I lose the ability to talk or formulate words. With that being said, my mouth would disappear during attacks. Ever seen Silent Hill? The little girl who doesn’t have a mouth? That’s me during an attack.

    Finally, even when I don’t suffer from a migraine, I still deal with daily cluster headaches. This would probably look like blood & water being pumped into my head at a high rate of speed, but overspilling thru eyes ears nose and mouth.

    Even today, it feels like I have nails sticking out of my temples, ears, and eyes.

    People would always see my little black demon. If not on me, then lurking nearby just waiting for the perfect moment to pounce.

  • Holly Baddour moderator author
    8 months ago

    Very apt and eerie description of the black demon. And the loss of words is an unfortunately common experience for many of us, called aphasia. https://migraine.com/blog/what-happened-to-news-reporter-serene-branson/.

    The cluster headache experience is extraordinarily demanding to navigate. I’m so sorry this is part of your experience. Have you talked with your migraine specialist about the newly FDA-approved migraine treatment called “Gammacore”? It’s a vegus nerve stimulator that was initially designed to address cluster headaches. Might be worth exploring: https://migraine.com/video/gammacore-approved/.

    Thinking of you and hoping you are able to get some relief today. Thank you for sharing and glad you’re a part of our community.

  • DinaMay
    8 months ago

    I love the vivid descriptions people have posted here. I was going to do one but I’m afraid if I do that (or read another description) I’ll wake that gigantic wolf that digs sharp teeth into me.

  • Holly Baddour moderator author
    8 months ago

    Glad this article and the amazing comments resonated with you. I hope that huge wolf stays quiet with its mouth shut for you today. Thanks for chiming in!

  • opa9ff
    8 months ago

    I’ve always described them two ways. First would be my head in a vise with someone tightening it. While someone else had my head hooked to a bicycle pump, pumping air into my head. Second would be someone driving an ice pick through my head with the steady rhythm of hammer blows.

  • Holly Baddour moderator author
    8 months ago

    Very interesting. My migraine specialist told me that some people describe migraines as pressure going in (a vice) and others describe it as their heads exploding (pressure going out). Ice pick-like severity is certainly a common theme and it sounds like your heart is causing throbbing to the extreme.

    You are so right that migraine has the capability to manifest itself physically. Here’s an article to that end that might interest you: https://migraine.com/living-migraine/visible-symptoms-showing/

    So glad you’re a part of our community! Please stay in touch.

  • opa9ff
    8 months ago

    Migraines can, at times, be visible. Many times I have had one and had people ask me if I had one because they could see the pain in my face and eyes.

  • Holly Baddour moderator author
    8 months ago

    Yes- so true- in fact, migraine attacks often show in the eyes: https://migraine.com/living-migraine/visible-symptoms-showing/#

    Thanks again for sharing!

  • anazon27
    8 months ago

    There were many times when I was younger that I remember asking to go to the nurses office at school for my medicine because of a migraine, and being judged by teachers. I remember a teacher in the 3rd grade asking me “do you know the story of the boy who cried wolf?”, she didn’t believe that I had anything wrong with me, or that I was in any pain, refusing to let me go get medicine. I sat at my desk in tears as I tried to get through a spelling test while suffering a migraine.
    In High-school and College my migraines were at their worst and art helped me express what I was feeling. I made images of where my migraine was located so that I could show people what I felt. I tried to express myself visually so that it was no longer an invisible problem. It helped my mother understand my migraines more, it helped me articulate them better to doctors, and even to understand them better myself.
    I would make migraines visible as almost a stain on the skin where the pain is. Red, like a rash, darker where the pain is most acute.

  • opa9ff
    8 months ago

    I had a teacher doubt me also. He later apologized after he started experiencing them himself.

  • Holly Baddour moderator author
    8 months ago

    @opa9ff and @anazon27 – You both help us recall those early migraine memories. The confusion of experiencing the most extreme pain of our lives being met with little to no compassion by those who were meant to look after us- is likely a fairly universal experience for many of us migraineurs.

    Incredible to hear how @anazon27 used art to express the pain and related neurological symptoms to try to help others understand this invisible disease. I can imagine doctors studying imagery to gain insight into the location, and type of migraine (pressure, heat, etc) to hopefully help tailor-make a treatment plan. I can also envision the process of creating the art to be therapeutic for the artist.

    And of course none of us would wish this kind of pain on our worst enemy, however it often seems others can’t truly understand migraine without experiencing it. So the experience of @opa9ff makes all the sense in the world.

    Thank you both for chiming in and for being a part of our community. Stay in touch.

  • msmaryb1954
    8 months ago

    WOW! This post has my mind going 100 miles an hour with possible pictures depicting the stages of my migraine. The easiest one for me to draw is the postdrome. I’m lying spread out on my bed with a sleeping mask over my eyes. Floating above me are a huge calendar with most of the squares marked “missed it”; a tree limb with a Salvador Dali clock dropping over it; and thought balloons, each with a chore I need to accomplish. There are so many that they’re squished together. On the side of my head is a large question mark representing will I have pain today, or just be exhausted and fighting the guilt of another day where all I can do is breathe.

  • Holly Baddour moderator author
    8 months ago

    Oh my gracious. You hit this out of the park with the details of your imagery! I love every angle of this and can picture it so well. Your post stands out because rather than focusing on trying to describe the pain and related neurological migraine symptoms, you’ve so perfectly captured the decimation that occurs as a result of migraine. The guilt, the angst, the exhaustion, the anxiety and fear. All of the emotion that hangs over and around us because of this disease. I’m so grateful to you for taking the time to participate in this exercise.

    What a memorable share.

    Grateful you are a member of our community. Please stay in touch.

  • Katie
    8 months ago

    I was at the grocery store yesterday and an employee said that I looked like i was out for a stroll in the park. I told him that i had a migraine with really bad headache. He told me that I hide it well.

  • Katie
    8 months ago

    I’d describe my migraines as getting electrocuted and lit on fire at the same time. But I don’t know how to visualize the aphasia. I can’t understand what people are saying to me, and I can’t respond right either.

  • Holly Baddour moderator author
    8 months ago

    Hi @KMCJones1– I can’t tell you how much I love both of your posts and how they play off one another. Because in your first, you describe how you look to the outside world– which is absolutely fine–not a care in the world. In the second, you so aptly describe the writhing pain that is going on within. Invisible to others, but so very real and acute.

    And you’re SO right, that describing aphasia is incredibly challenging. Recently, as I’ve been adjusting to reading glasses, I’ve thought how it’s similar to blurry words- everything’s out of focus just for us- and we don’t have the glasses we need. The rest of the world can see clearly, but we are left stumbling over the words we need. I think we can do better in describing aphasia- that’s the closest I’ve been able to come so far. Let me know if you figure it out!

    Thanks so much for sharing.

  • Primrose35
    2 years ago

    My migraine would look like a huge alien demon who landed on earth ready to take out light years of vengeance against the first human it encountered – me. It would press my head between its large hands, digging its claws into my eyes, jaws, and at the base of my skull — all the while pressing its full weight downward as if to push me into the earth. It would help if others knew what I go through though I am “blessed” if you can call it that. My wonderful husband gets migraines too and he always says, “When I think that this is what you go through all the time, I don’t know how you do it.” I don’t think people can know unless they experience it themselves, though I appreciate it when people want to try. It’s a bit like explaining all the pain of labor and delivery to someone who has never given birth. I used to say jokingly that if Spock on Star Trek could do the “mind meld” to understand others’ thoughts, wouldn’t it be great if our doctors could “plug in” to us and simultaneously feel what we are feeling? There would be a lot more compassion for sure.

  • Holly Baddour moderator author
    2 years ago

    Primrose35- your comment reminds me almost of tapping into an electrical current. If we (with migraines) were that electrical current and others were to stick their fingers into our outlets- they would feel literal shock at the pain we experience so frequently (or constantly in some cases). Thanks so much for that imagery and idea. Warmly, Holly (migraine.com team).

  • sandrac
    2 years ago

    I always tell my doctors that it’s like a piece of rebar that runs through the top of my head down my neck and into my shoulder. It’s also like someone put a water hose inside my skull and filled it to capacity but keeps filling with tremendous pressure on the inside of my skull and about to burst while all the little nerves inside and out are inflamed and dangling and sore to the touch.
    ***But the absolute worst is the picture of the world existing and carrying on with its sounds, lights, smells, activities, laughter, and ambitions all around you while you walk this lonely grey path, almost like down a lonely desert highway at night, because noone has a clue, or would understand if they did, the true exhaustion, pain, dizziness, confusion, depression, anxiety, fear, and loneliness you live with.

  • Holly Baddour moderator author
    2 years ago

    sandrac- my goodness, what a picture you paint with the image of someone walking down a desert highway in the dark of night and alone. Haunting and unfortunately, relatable. The pressure of the water hose is also something I think many of us can immediately understand. Thank you so much for your share. Warmly, Holly (migraine.com team)

  • hippiechick
    2 years ago

    If my migraines were visible you would see a collage. In the center would be an illustration of an individual at the precise moment a speeding train collides with him/her. You would see their brain being expelled from their head. The tail of the train would be a large, gray, destructive tornado casting cars, homes & debris from it. The cloud that produced the tornado would be steel gray, ominous with several bolts of bright yellow lightening. Behind the train and spreading across the collage the storm cloud would transition to a cold, icy, windy blizzard and then to an angry, hot, orange and red wildfire with dancing flames as it burns out of control. Next to the individual who is getting hit by the train would be a large, purple flower with a sweet, sticky nectar dripping from it’s petals. Below the petals would be a muddy, wet, stinky dog, barking and whining because he can’t pull his paw from the puddle of nectar. Hidden throughout the collage would be trumpets, drums, ringing phones, crying babies, loud TV’s, etc. And across the whole top of the collage would be blackness that is slowly dripping and creeping it’s way down and covering the collage. In the blackness would be death, shrouded in a hooded cloak holding his sickle representing the eventual result of my chronic migraines.

  • Holly Baddour moderator author
    2 years ago

    hippiechick- wow. This is a tremendous feat in visuals. I wonder if you’d ever try bringing this collage to life. I wonder if doing so might prove therapeutic. I actually think that might be the case for all of us – to put pen to paper- or collage – or whatever medium, to visualize this invisible condition.

    I did want to share with you this article I just wrote using Tornadoes as a metaphor to describe migraines. Seemed too much of a coincidence not to mention after what you shared:https://migraine.com/living-migraine/somewhere-over-the-rainbow-migraine-as-tornado/

    Thank you so much taking the time to share such heartwrenchingly beautiful and haunting imagery.

    Warmly, Holly B. (migraine.com)

  • JerseyGirlMel
    2 years ago

    Over ten years ago, I saw an advertisement for migraines in a magazine. It had a drawing of a normal woman with the caption “this is what a migraine looks like.” Beneath that drawing was one of the same woman looking distorted, disheveled and obviously in pain. The caption on the second drawing was “this is what a migraine feels like.” That drawing was spot on. I’ve searched online to find that ad, but haven’t been able to. I have found some that are close, but none like that first one.

    Most of the time, my migraines feel like a never-ending brain freeze, the severity of which varies. Then sometimes, I get migraines that feel like someone is stabbing me in the temple with a red hot poker, twisting the end of the poker inside my skull and scrambling my brains.

    I rarely get any auras… I usually wake up with my migraines (like a bad hangover, only without alcohol). The only auras I have ever gotten are when I used to work 3-11pm. I would drive home at night and feel like everyone had high beams on. That was the only time I knew with 100% accuracy that I would wake up with a migraine.

  • Holly Baddour moderator author
    2 years ago

    JerseyGirlMel, oh- I know that feeling of mistakenly believing that everyone has their high beams on. I’ve made the bad misstep of flashing my lights to get them to take their lights down just to have them flash their actual high beams in my pained eyes.

    Several folks have mentioned hot pokers- this is definitely a theme. Interesting that you say that at the same time as mentioning brain freeze. Several people mention the contrast of ice picks and hot pokers.

    I’d love to see that advertisement you mentioned- if you ever find it. Thanks for joining the discussion- I really enjoyed hearing your imagery. Warmly, Holly B. (migraine.com team).

  • tjayinoz
    2 years ago

    I just had an interesting experience that I tried to use to illustrate the depth of pain my migraines cause: I had a dreadful persistent, wet & chesty cough that my husband could see, hear and which lead him to be quite concerned about me. I pointed out to him that the cough, its related chest pain and muscle fatigue was nothing compared to a migraine – unfortunately he didn’t get my point – which was: Just because I have something wrong with me that you can see and hear – what you can’t see (if you don’t bother to look) can be so much worse!!! Oh well . . .

  • Holly Baddour moderator author
    2 years ago

    TJay- such a great point! Our families and friends are quick to be concerned about that which they can see and hear that seems concerning, but because migraines are silent- the condition doesn’t draw their attention in the same way. Thanks for making that connection for the rest of us. Warmly, Holly B. (migraine.com team).

  • Kristy
    2 years ago

    Funny this has come up, and these are all great. My sister just asked me last night how I had been doing? Well I told her 2 days ago I was in bed what felt like I had been lying in a puddle of my own blood for 2 days with a huge crater in my head pointing to my left temple. And I am most positive that’s where the tumor is. My sister gave me a look like she wasn’t sure if I was kidding or what, she didn’t respond needless to say. But she gets it. I get tired of the same old, no I don’t feel well I have a Migraine x2 days.

  • Holly Baddour moderator author
    2 years ago

    Kristy- now THAT’S an image. I’ve been in bed for most of the past week, and I really get that lying in a puddle of your own blood feeling. Such a perfect descriptor. Thanks so much for sharing- it’s great to read these and remember we are not alone! Warmly, Holly B. (migraine.com team)

  • marti
    2 years ago

    My migraines would be visible as a large muscular man who follows me around and bashes me in the base of my skull with a baseball bat.

  • Holly Baddour moderator author
    2 years ago

    marti- oh my goodness! How awful- and yet, how easy to picture because that is precisely how it feels. Thanks for sharing. Holly B. (migraine.com team)

  • seagypsy
    2 years ago

    Today, it would be the cartoon character eyes bulging out of my head in time with my heartbeat. Then, the right side of my head, face, neck, and shoulder would be a huge block of obsidian that is so very brittle and sharp, any touch would make their hand bleed and possibly make the obsidian break into a million pieces. All the while, I’ve got a head and neck brace on making sure I don’t move either too fast because that will make me disturb the lovely non-scented vomit catching bag I have stored some where on my person. I would have a big sound bite cloud coming out of my mouth that had gobbledegook written it, because all of my communication today has been crap; Major near-term memory issues this last week. I’ll have a sign on me somewhere that has large enough font that tells everyone, “Please, no garlic, bleach, perfume, or other gag-worthy scents. No, I don’t need an ice pack or an essential oil. Yes, today’s headache is different than yesterdays”.

    I want a washing machine over my head some days that is set to the spin cycle. That is how my brain feels on a bad day when I have CRS disease.

  • Holly Baddour moderator author
    2 years ago

    seagypsy- I know nothing about having migraine is funny, but your post made me laugh. Especially the part with the nonsensical comment cloud over your head. Perfect. And “yes, today’s headache is different…” Ahh, so funny because it’s true. Thanks for sharing. Warmly, Holly B. (migraine.com team).

  • Jani8
    2 years ago

    Sometimes my head feels like it is radiating pain from every cell. Perhaps it could show as an red fog perfectly formed around my head. I also have this feeling that someone with cleats on their shoes are stomping on the back of my eyeballs. Maybe we could show the shoe coming out of my head. We could also have a device to hold the vomit bags you get in the hospital. It would have a function so when you use it it is right by your mouth by can turn sideways so you don’t have to smell it, which would probably trigger another migraine. Right now I have the usual ice pick going from my temple to the back of my eye. I also get burning, throbbing pain at the back of my neck which is climbing up to meet the ice pick. Perhaps when they meet it will produce a mushroom cloud of epic proportions in neon pink. We could also have a dark cloud over our head when we know a migraine is coming. Sometimes my migraine is visible to those who know me best. They can see it in my eyes. It’s something I never figured out how to fake it.

  • Holly Baddour moderator author
    2 years ago

    Jani8- I have heard others talk about how their migraines are visible to their loved ones- and primarily through the eyes, as you mentioned.

    I am amazed by the strength of your imagery. I almost got nauseated picturing smelling the vomit bags! Nicely done.

    The ice pick thing seems pretty universal- well, interspersed with those who feel it is a hot poker, instead. I wonder why for some it is hot and others cold.

    I’m so grateful you joined the discussion with these great visuals. Hope you’re feeling better today. Warmly, Holly B. (migraine.com)

  • Macbeck
    2 years ago

    How about a cigarette sticking out of the nose for those phantom smells?

    A padlock (locked so you can’t remove it) either hanging in the tongue or holding the lips closed?

    How can you illustrate triple vision? Maybe by putting 3 eyes stacked on one side. (mine is the left, but either side works)

    Some type of swirling vortex to show vertigo??

    Those a my thoughts and my life.

  • Holly Baddour moderator author
    2 years ago

    Macbeck- these are great ones. Really good to show others what it feels like. Padlock for inability to speak? perfect. And just the thought of smoke makes me sick. Good one. Though I wouldn’t wish it on anyone, I’m glad I’m not the only one with double/triple vision. That one is crazy making indeed. Thanks so much for sharing and here’s hoping you’re resting comfortably this evening. – Holly B. (migraine.com)

  • Jojiieme
    2 years ago

    Hollybee, we also need a way to show the long slow build-up, so you’re not 100% sure (you hope it isn’t happening) this will be another episode; and a way to show the dread of “how long will this one last??”, “is this the right time for [that abortive strategy] or do I wait a little longer?”, and the exhaustation that comes with constant vigilance for every sign and symptom.

    I’m in a constant mental fog just from the 24/7 mental medical surveillance – even my patchy sleep is full of dreams about migraine episodes!

  • Holly Baddour moderator author
    2 years ago

    LAnnSmith and JOJ – I am very drawn to this idea of surveillance. What a great word to describe how we spend our lives when not in pain. Constantly monitoring, taking stock, scanning all systems for the next attack. Almost like some sort of weird security system for the body. Never in off-mode. Never relaxed. I will continue giving this thought – and keep your eyes out- it’ll likely show up in an upcoming article. Thanks guys. Holly (migraine.com team).

  • LAnnSmith
    2 years ago

    How right you are JOJ! Constant surveillance is exhausting and an aspect of chronic migraine that’s often overlooked. So much of the time I’m getting one, having one, or recovering, and all need to be analyzed for current status or appropriate treatment.
    If I get a few days break from migraine attacks, I sometimes ask myself if all that scrutiny is really warranted. From the outside it looks obsessive, but during a migraine attack it feels so necessary. How else will I know when to wait out the pain or pull out my bag of voodoo tricks to maybe knock it down?
    Plus I need to know all the components I’m dealing with: pain, nausea, vertigo, vision, muscle/skeletal pain stiffness, light, sound, smells, ringing ears, water and food, where’s the ice hat and heating pad, clothing, temperature, head/scalp, other ailments flaring due to migraine, pet care, family care, can I manage a shower, did I put on deodorant, wash my face, and brush my teeth? … funny/not funny …

  • Jojiieme
    2 years ago

    Today, my forehead is imploding, slowly being crushed by the weight of the universe rushing. At same time, my ears are shrinking with every noise apart from a very narrow band of comfortingly neutral natural low-impact sounds (which my usually sympathetic partner understands but TODAY he just has to have Carole King blaring shrilly from every corner of the house…).
    Yesterday, there was an ice pick boring into my right tear duct and eye socket (from the inside) while the crown of my head, at the back, was being enamelled by some fierce evil troll. Eventually I gave in and took a Zoltrip, lost power of coherent speech and crawled into bed early because it hurt too much to hold my head up.
    But what would people make of the days when bits of my don’t exist for me? Or seem to be connected the wrong way (an Alice thing, feet wanting to be close to my head like hands, or ankle skin being overly sensitive like lips or eyelids), or the days when literally I just feel like raw red weeping eyes stuck above a gushing stomach drain and a pair of feet?
    (Oh gd, now the truth is out)

  • Holly Baddour moderator author
    2 years ago

    JOJ- i think your imagery requires some sort of live animation. I’d love to see that troll in action. And love the specificity of the tear duct. Great descriptors. Really hoping you are feeling better tonight. I’ve been having a severely rough ride also. Hate when you get to choose only between nausea/vomiting and consciousness (my med makes me sleep). why is there no choice for wellness??

    big warmth coming your way- holly b (migraine.com team)

  • TrishaNP
    2 years ago

    My migraine would scare people if they could see it. It would appear as as a spiked eye/temple/behind the ear patch strapped to my face. Fire and smoke blowing out of my ears. The eye left uncovered would be boiling/thumping out of the socket from from the pressure. And finally the back of my neck would be so stiff and sore a metallic plate with a little man banging on it would be there. That’s just the before the sun hits me; after that I run like a vampire and the intensity increases!

  • Holly Baddour moderator author
    2 years ago

    TrishaNP- what rich imagery. It does sound terrifying but I’d actually love to see it animated. I’m thinking we need to put together a book of all of these great images to help others understand what life with migraine is really like. Thanks for sharing! Holly B. (migraine.com team)

  • Bobbie
    2 years ago

    They would either see my head surrounded in bright flames burning out of conrol or sometimes it presents as freezing cold water trickling all over my head :O 🙁 Bobbie

  • Holly Baddour moderator author
    2 years ago

    Hi Bobbie- Temperature extremes are such a constant theme that runs true for so many of us. Thank you for bringing yours to life with these images. Glad you joined the conversation. Holly B. (migraine.com team)

  • Holly H.
    2 years ago

    If they would try to see through my 24/7 aura associated with my chronic/constant migraine with aura: They would be looking under water, through an undulating current. They would have geometric shapes whizzing by from and to every angle, including shapes flying away from and towards them. There would be a couple of small halogen lights 3″ from their eyes from the left, and a pillar of milky white light on the right from top to bottom. There would be 2 smaller “black holes” floating around, and one larger blob of one at center bottom. There would also be additional little bright lights whizzing by from right top towards the left bottom. And on really bad days, make that all even more blurry and out of focus. On Alice-in-Wonderland aura days, things are wrongly sized. For instance, their arms would look very long and quite thin, but their hands would look enormous. Their feet would look tiny and they would feel 10′ tall. As a matter of fact, they would walk very carefully on those days because things are so wrongly sized, they easily misjudge their next step.

  • Holly Baddour moderator author
    2 years ago

    From one Holly H. to another Holly H.- I just have to thank you for an amazing description of your aura. My goodness- you did wonderful job illustrating with words that which is almost impossible to describe. Amazing. Thank you for taking the time! Holly (H) B. (migraine.com team)

  • abipolarpenguin7227
    2 years ago

    Everyone would likely see a wire coat hanger sticking out of my eyeball while a dump truck plows through the back of my head… while an endless loop of loud booming bass and flashing lights sets the mood. And don’t forget the mushroom cloud of fragrance!

  • Holly Baddour moderator author
    2 years ago

    abipolarpenguin7227 – Wow- I feel like I’m right there with you. And I don’t want to be! A great description of horrific pain. I hope those without migraine will read this so they can have a better understanding of what we all face. Thank you for adding to the conversation- Holly B. (migraine.com team)

  • Maureen
    2 years ago

    Right now, everyone would see the disembodied hand that grips the back of my head. It doesn’t really yank me around, it just weighs me down. But often, the Herman Munster look would rule, except the rods poke from my temples not my neck. Of course, sometimes we could change it up and go with the one extra large eyeball and “Eyeball!” playing loudly like a soundtrack over and over constantly.
    I personally loved the idea of the flashing lights! That would really help get the message across of what really hurts the most on a regular basis!

  • Holly Baddour moderator author
    2 years ago

    Maureen- Love your description- especially of “eyeball” playing loudly like a soundtrack constantly. I am so grateful that you joined the discussion with such a rich offering. Warmly- Holly B. (migraine.com team)

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