Your Migraine is Showing
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A stranger told me he could tell I had a migraine the other day. Something about my eyelids, he said. I was conflicted about how to take it. Of course, in many ways, the fact that migraine is an invisible disease makes it very hard to convince others of its serious nature. How, after all, can we possibly be struggling with such crippling pain when we look absolutely fine? This conflict – between looking fine and feeling terrible – adds weight to the widespread belief that we are fakers.

That said, I don’t think any of us would actually want to look as bad as we feel, even if doing so were to serve as the world’s most effective PSA for migraine. I hate to admit that my vanity would get in the way.

If migraine symptoms were visible

We posted an article recently asking our community members to describe what migraine would look like if it were visible. The comments were amazing and terrifying. People described bleeding eyes, knives sticking out of their heads, ice picks, vices, contorted expressions, and much more. The visuals were spot-on and heartbreaking. It was an interesting exercise, though, to consider what it might be like for the world to be able to actually see how we are feeling. If others could have a window into the intensity of our pain, the level of compassion and understanding on the topic of migraine would undoubtedly grow exponentially.

When others see the signs

Thankfully or not, our pain is largely invisible. In the midst of an attack, or when one is unfolding, many of us actually show a sign or two that are perhaps noticeable to those who know us well. I’ve heard many people say that a loved one is often the first to tip them off to an impending attack. My husband has played that role, notifying me that my eyes look a little off. And sure enough, soon after I will have a full-on attack.

When I was staying at an inpatient headache clinic, my roommate had the wildest visual manifestations of migraine I have ever witnessed. One side of her face would become paralyzed (stroke-like) and her eye would turn black and blue, as if she’d been punched. When the attack resolved, so, too, would her normal expressive face.

Cumulative effect

For many of us who battle chronic migraine, there is another potential visible sign of having the condition. It’s one we share with others who wrestle with chronic pain of any sort –  the challenge of aging early. Due to the frequency and severity of pain, our faces and bodies may reflect the cumulative effect of a lifetime of attacks (hours upon hours of wincing pain can lead to furrowed brows and wrinkles around the eyes, tight necks and shoulders might lead to a hunched posture, and so on). It’s no real surprise that years of clenched jaws, and hours spent in the fetal position will have some effect on how we carry ourselves. It surely takes its toll and shows itself eventually in one way or another.

Making peace

Just as with the normal wrinkles and gray hairs that are beginning to show themselves as I approach my fifties, I try to remember that I have earned every single one. They are signs of earned wisdom and experience. They are lessons learned after brushes with some of life’s most difficult challenges.

So, rather than being defensive when a stranger sees an attack on my face, I will strive to remember that my face and body are windows into my experience. Just as a drooping eyelid might portend an oncoming attack, some of the lines of my face that have been created from my endlessly clenched jaw are badges of honor proving my strength, resilience and survival in the face of extreme trauma and pain.

Do you have any visible signs that foretell a migraine? Can loved ones tell when you are about to have an attack or when you are in pain? Does your body show cumulative signs of being a migraine warrior?

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20 comments on “Your Migraine is Showing

  1. Aks2868 says:

    Hi! My daughter ALWAYS knows when I am getting a migraine–even before I do. She says I blink my eyes differently and one eye’s color fades.I also have noticed that I get really spacey and have a hard time finding the right words before one comes on. When it is in full bloom, I get paler, the circles under my eyes get really dark, and my face looks lopsided. My mother and son also know when I have one–they just say, “You have a migraine today, don’t you?” My husband doesn’t mention it much; I think he just knows and gives me the space I need at the moment.

  2. Holly Baddour moderator author says:

    Hi @aks868– That’s fascinating! Sounds like you are experiencing some aphasia https://migraine.com/blog/recognizing-my-own-aphasia/ as a prodrome. So many folks are mentioning the eyes being a telltale sign of a migraine in the works. An interesting commonality, to be sure. Thanks for chiming in!

  3. 25uaq9i says:

    My husband always ask do you have a headache? Your face is really pale and he is always right!!! Does anyone else have this something during a headache?

  4. Holly Baddour moderator author says:

    HI @25uaq9i– So nice to have an alert and kind husband. Sounds like he’s very keyed in to how you appear. That can be so helpful! Sometimes our loved ones can see that we have a Migraine attack coming on before we are aware of it ourselves! Are you asking if others experience their faces becoming pale prior to an attack or if others have aware spouses who help them identify their attacks in advance? I hope others will read your question and give their thoughts here- however, in order to get more answers from our resourceful community, you might post your question here: https://migraine.com/q-and-a/ . Thanks for sharing!

  5. onehsancare says:

    Close friends and family will look at my eyes and say, “You have a migraine, don’t you?” This is, as Debbers says, a comfort, that they love me enough to notice what I try to hide.

    It’s also helpful, because my first symptom is often brain fog, and the concomitant inability to recognize the need to take an abortive. “Have you taken something?” is ALWAYS a welcome question, because all too often, the answer is, “Oh, yeah, that would be a good idea!”

  6. Holly Baddour moderator author says:

    Hi @onehsancare– So wonderful of you to give a positive directive to friends and loved ones regarding what is welcomed when we are wrestling with migraine. There are so many things that can be said that aren’t so helpful- that it’s terrific to let folks know what IS helpful. I was going to send you a link to an article on “things to say to a migraineur” but it turns out we actually only have articles on what NOT to say! And we have 4 articles on that topic! https://migraine.com/?s=things+to+say&submit=Go. Perhaps it’s time to create an article with tips on what TO say. And we could start with your helpful advice. Thanks for sharing!

  7. headake says:

    My chronic cluster migraine syndrome has resulted in a ptosis in my right eye. My pain specialist notices it when I have a headache and my GP says it’s my ‘barometer of pain’. The worse the headache, the ‘droopier’ my right eyelid becomes.

    Anyone else have this visible migraine ‘tell’?

  8. AnB says:

    Yes, I am at the tail end of a 3 1/2 day migraine, and my right eyelid was droopy yesterday at the peak of the pain…the majority of the pain seems to center in the right temple, like an ice pick and “show” in the drooping eyelid on that side.

  9. Holly Baddour moderator author says:

    Hi @1wn7qkr – Hoping that attack has resolved completely. That’s a long one. Eyes and eyelids seem to be a “tell” for many. Interesting about having the pain on one-side and the drooping eyelid on that same side. Really validates migraine as the complex neurological disease that it is. Also, many migraineurs speak of the ice pick sensation-https://migraine.com/living-migraine/what-if-migraines-were-visible/ . Thanks for sharing and please stay in touch!

  10. Holly Baddour moderator author says:

    Hi @headake – First, love your username- second- also, love the idea of thinking of the eyes as a window into what’s happening inside. Several people are mentioning the right eye- I wonder if the right eye is more common to be droopy than the left? Also- is your pain more centered on your right as is AnB’s below? As to your very good question- I hope others will see it and answer it here, but if you’d like more “eyes” on your question in hopes of inspiring more of a discussion, you might post it here: https://migraine.com/q-and-a/ . Thanks so much for joining the conversation. Stay in touch!

  11. Holly Baddour moderator author says:

    Hi @headake – First, love your username- second- also, love the idea of thinking of the eyes as a window into what’s happening inside. Several people are mentioning the right eye- I wonder if the right eye is more common to be droopy than the left? Also- is your pain more centered on your right as is AnB’s below? As to your very good question- I hope others will see it and answer it here, but if you’d like more “eyes” on your question in hopes of inspiring more of a discussion, you might post it here: https://migraine.com/q-and-a/ . Thanks so much for joining the conversation. Stay in touch!

  12. Debbers says:

    ive always had ‘migraine eyes’. those closr to me know them well. my daughter also gets them. we have dark circles and we kinda look drunk. which is fine cause some times we feel that way. our brains slow down and our ability to focus greatly diminishes. we actually call it ‘pain drunk’. my cousin, with R.A. is the same too.
    when someone notices it i find it to be a kind of mercy. i find comfort in the people who love me enough to notice the things i try to hide. i cant pretend with them and there is freedom in that.

  13. Holly Baddour moderator author says:

    Hi @debbers – “Pain drunk?” What a great term. Very apt. And yes, there is such a comfort in the people who know us so well that they can see our pain regardless of our attempts to hide it, and sometimes they can see it before we even know an attack is coming. Glad you have those kind of people in your life and so glad you are a part of our community!

  14. Luna says:

    If I have any visible signs of migraine the cats never let on.

  15. Holly Baddour moderator author says:

    @luna – That is hilarious. Thanks for the laugh!

  16. marycr8on says:

    I do have visual symptoms. My eyes, especially my left eye get very swollen. They look like I’ve been crying for a week straight. When I’m having a particularly bad migraine, the upper lids swell out farther than my eyebrow and I normally, have slightly sunken eyes. My husband will take one look at me and say something like “I see you’re not having a good day.”

  17. Holly Baddour moderator author says:

    @marycr8on– great to hear from you, as always! The eyes certainly sound like they are a window into migraines for many of us (there were a lot of comments along these lines on the facebook page in response to this article as well). So nice to have a husband who is tuned in!

  18. marycr8on says:

    He’s had a lot of practice! ; )

  19. dmae says:

    Thank you for posting this, Holly. I once had a coworker who could tell I was unwell. He would look at me and say, “You’ve got a headache. You need to go home.” I brushed it off, soldiered through. I don’t know what the coworker saw, I’ve experienced some of the same symptoms you have. I suppose some people just notice subtle changes in behavior and appearance.

  20. Holly Baddour moderator author says:

    @dmae– It sounds like your coworker saw it before you felt it? That’s an interesting dynamic, isn’t it? Makes you want to take that person around with you so they can tip you off when a migraine is coming!

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