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Feb 06 2013

“That Must Be Awful!”

What do people say about migraine disease or other headache disorders that annoys or angers you?

Somebody Heal Me runs a blog carnival on migraines and other headache disorders. This was their prompt for the current carnival. As someone who has incredibly frequent migraines, I have an answer to this question, of course. In fact, I had a hard time choosing.

The first one that bugs me is “How is your head doing today?” Look, I understand that people want to be nice. I get that I can be a private person, and it can be hard to add a personal touch to a conversation because of that. I get that this is something people know about me that is unusual and, thus, memorable. I appreciate all that.

However, I don’t really want to discuss the details of my health with people just because they want to make conversation. First off, the reason you don’t know much about me is because I am a private person. You wouldn’t know anything at all about my migraines if they weren’t disabling enough to affect my activities.

Secondly, my migraines already play a large enough role in my life, thank you very much. I don’t want to be the person who has migraines instead of kids. I don’t want to spend more time talking about them, except with those few people who are in a position to make my life easier or who are owed some explanation of why I’m making their lives harder. Every other conversation about my migraines is simply taking up more time with a disorder that affects days out of each week.

“Several days a week? That must be awful! When I get a migraine….” That’s the real pet peeve. It’s a little hard to explain why, but I’ll try.

The common conception of a migraine is that it’s a really bad headache. It’s not. It’s a perceptual disorder that can cause light and sound hypersensitivity, visual and auditory hallucinations, somatic hallucinations and related dissociation, difficulty understanding or producing spoken or written language, confusion, fatigue, insomnia, thermodisregulation, vertigo, nausea, and yes, extreme pain. I’m sure I’m missing some, but those are the symptoms I get.

When people try to sympathize over how awful my migraines must be, they’re really saying, “Oh, that must hurt!” For me, though, pain is my least frequent symptom. That comes pretty much only when I get a classic migraine with aura, and it’s incredibly treatable. Maxalt and naproxen sodium at the first scintillation, and I’m aware of where there would be pain, but I don’t feel it. I usually get what is called migraine variant (pdf), or migraine without the pain.

Not so awful, right? Yeah, go back and read the rest of those symptoms.

It’s the vertigo that keeps me out of work the most often. We’re working on getting a useable bathtub in the house, but all we have right now is a shower. Standing with your eyes closed for several minutes when you can’t even make it to the bathroom without listing to the side isn’t the greatest idea, even if you weren’t doing it in order to go sit at a desk while waves of dizziness roll over you. Add bright overhead lights and coworkers typing, talking, walking around, and just clearing their throats, and the whole thing gets unbearable.

Then there’s all the time I spend just having to trust that I’m doing what I mean to be doing. I have to trust that those hands on the keyboard that don’t feel in any way connected to my brain are going to do what I tell them to do. (Or when it gets really bad, I watch them to make sure.) I have to trust that I really do understand the math I do well enough to go from step to step, because I can’t verify it as I work. I have to trust that the words I write are not the disjointed fragments they come back to me as when I read them. I have to trust my spellchecker to catch typos and slowly think through homonyms step by step. At least I have online dictionaries to check my word choices when they stop feeling right.

Oh, and the vision. Did you know that some people can face windows with slotted blinds? Or talk to people with striped shirts without having to carefully focus on their faces? Or tell whether there are two or three Ls or 1s sitting next to each other? Or read light text on a dark background? Or look at things for a second or two without carrying around strong afterimages? I assume from the way the world is ordered that this is true, but I can’t attest to it myself.

So is it awful? I don’t know. I don’t really have a life without migraine to compare it to. It’s a lot of work, and it gets in the way, and it keeps me from accomplishing everything I want to accomplish. But it isn’t constant pain.

Constant pain is what those people mean, though, when they say, “awful”. I can nod and lie by omission, let them keep wandering around with the same misconception that kept me from even talking to my doctor about migraines until I’d already had them for a couple of decades. I can let them think that the weird things that (possibly) happen in their brains are laziness or possible signs of mental illness or possible signs of a more threatening illness, all things I thought before I understood migraines. If they are women, I can let them grapple alone with the idea that they’re just delicate in some unspecified way that plays into gender stereotypes.

Alternately, I can try to educate people on a condition that–conservative estimate based on the research–half a million women and somewhat fewer men suffer from in the U.S. alone. I call that a conservative estimate because I have no idea how many people out there get atypical migraines, but I can tell you how they go undiagnosed. I can tell you how I described classic visual hallucinations of migraines to eye doctors over the years, only to have them shrug them off without telling me why. I can tell you how many doctors said, “Meh”, to vertigo because there was nothing wrong with my ears. I can tell you how many suggested anti-depressants when I described classic prodrome and postdrome symptoms and the frequency with which I experience them. And I can tell you how the doctor who finally told me that migraine can happen without the headache almost made me cry in her office from sheer relief.

I can try to tell all that to the people who say, “Oh, it must be awful”, too. I can try to educate them, in case the information might be helpful, because it certainly isn’t coming from anywhere else.

I can’t, however, guarantee that they’ll hear anything more than, “It doesn’t hurt most of the time.” I can’t guarantee that they’ll think anything but what I’ve thought at various times: slacker, whiner, insane.

That’s the choice I face every time I hear that phrase. I can let the lack of understanding lie, or I can risk having it turned on me directly. It’s not a fun choice. And that’s why I cringe every time I hear it.

30 comments

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  1. 1
    Josh, Official SpokesGay

    Very well put, Stephanie. The misunderstanding reminds me of people who use the word “depressed” casually.

    I am very lucky to have had only two migraines in my life, in childhood. They’re vividly memorable for the scintillating aura, the auditory. . I can’t even describe it. . . the horrendous pain and the vomiting. These are NOT headaches, no ma’am.

  2. 2
    Hazel Stone

    My family call migraine-without-headache ‘silent’ migraines. My mother and my sister both get them.

    I get the classic kind, plus vestibular ones that attack my balance system to such an extent that I can’t walk in a straight line, and once, for extra special shits-n-giggles, a hemiplegic migraine that paralysed me all down my left side for two hours. I always get the pain though. I have drugs that can usually deal with the pain but if the triptans don’t halt the migraine I’ve yet to find anything that really takes away the confusion that always accompanies mine. That’s the hardest side-effect to handle as I sound drunk: slurred speech, inability to understand what others are saying and deep, deep confusion – to the level where I can’t figure out how to open a door. *sigh*

    And yes, I hate people asking about them. I just need people to understand that sometimes I need to go home and lie down *right now*, and I’ll be back in a day or two looking exhausted and hungover.

  3. 3
    Lyra

    Several days a week? That must be awful! When I get a migraine….it’s very similar to your experience. I feel your pain or the sometimes lack thereof.

    Yeah, it isn’t what people say that is a pet peeve of mine. It’s how they react…dismissive. It’s only been the last few years that I finally had more than one doctor diagnose my problems as migraines. I spent way too many years going to doctors, specialists, etc. about my persistent problems and I seem to even remember one or two doctors saying they didn’t think migraines were a real thing when I brought it up as a possiblity.

    Now that I have a name for it I’ve even had people give me the “are you sure you didn’t just read that on the internet and think you have it?” type reaction. Ironically, I’ve spent so many years thinking “it’s all in my head”, which I’ve also been told more than once, that I forgot that I even have the name migraine to give to what is now just a part of my life.

  4. 4
    freemage

    I get ~mild~ classic migraines–pain, thermodisregulation, extreme light sensitivity (and since I’ve been on blood-pressure meds, they’re VERY rare). My wife gets almost exclusively ‘painless’ migraines. If she weren’t my wife, you couldn’t pay me enough to swap symptoms with her (as it is, there are times when I wish we could, if only because her work’s less forgiving on sick days than mine). We’re both lucky in terms of frequency, though, so you have my sympathy and limited understanding, and that’s about the limit of what I know I can offer.

  5. 5
    Karen Locke

    I never thought migraines were a big thing until the test engineer I worked with in the late ’80s missed three days of work with one. Dan was a very hard worker, hardly ever got sick, and certainly wouldn’t waste three days of PTO on something trivial. So I read up on migraines. Since then I’ve had nothing but respect and concern for people who have these horrible symptoms that I can’t even imagine having.

  6. 6
    Giliell, professional cynic -Ilk-

    Well, when my sister has migraine I usually say “I’m sorry, I hope it gets better soon, can I do anything for you*”
    When I call her the next day I ask her if she’s better because I don’t want to keep her on the phone chatting while she’s in pain, since we both suck at telling people that we’d actually just like a bit of peace now.

    *Like coming over and taking care of gran

  7. 7
    Stephanie Zvan

    Yeah, there’s a huge difference between the idle question and people asking whether I need anything.

  8. 8
    Susannah

    Thank you for writing this!

    I didn’t know about the thermodisregulation. For me, vertigo and thermo- go hand in hand, with or without the rest of the migraine symptoms and I wondered what was going on. It helps to know.

  9. 9
    Stephanie Zvan

    Susannah, the most classic thermoregulation problem with migraine, from what I know, is the cold-hand problem. In fact, some people find that if they can get their hands to warm up, they get relief of other symptoms as well. It’s weird…but so are migraines.

  10. 10
    A Hermit

    I don’t get full blown migraines very often anymore, I’ve learned over the years how to spot the onset and how to manage them to avoid the worst symptoms. (And yes, I know how lucky I am to be able to do that…) But when I’m in the grip I’m helpless; all anyone can do for me is stay away and let me sweat it out under a warm blanket in a dark, silent room. The sound of snowflakes hitting the bedroom window can produce excruciating, nausea inducing waves of pain.

    But even when I’m able to keep the pain away I try to avoid tasks like staring at a computer screen or driving. the visual weirdness and disorientation can make such things difficult (or even dangerous).

  11. 11
    Susannah

    Thanks again, Stephanie. I get alternating waves of heat and cold, with vertigo and usually some nausea. Getting my temp back under control usually stops the vertigo within a few minutes.

    (I’ve hobbled out into the snow in the middle of the night, because I woke up feeling like the bed was rolling over and I was going to fall out. A couple of minutes outside stopped the world spinning.)

  12. 12
    sueinnm

    Wow. I didn’t know all that came with migraines. The funny thing is, I have many of the same symptoms most days of my life, and I know in my case it isn’t migraines. I am a writer, and there are times of the day in my winter that my hands are so freezing that I have to write with gloveless mitttens, which is difficult, and doesn’t help my fingers. (My hands are doing that right now.) I frequently list to one side and bump into walls. (Yes, have had a brain MRI) I’m constantly dropping things, too.

    “It’s a perceptual disorder that can cause light and sound hypersensitivity, visual and auditory hallucinations, … difficulty understanding or producing spoken or written language, confusion, fatigue, insomnia, thermodisregulation, vertigo, nausea,….”

    I have all these frequently. I actually can’t remember the names of common objects several times a day at least, though I can write them. Fortunately, no hallucinations. Not much nausea. God, that would be the worst. But in my case it’s bipolar II disorder and one of those hypersensitive bodies/minds that are easily overstimulated. Going to the gym can be hell because of all the noise.

    It ain’t fun having those hypersensitive eposides, whatever causes it.

  13. 13
    Lyra

    @Susannah

    I thought I was the only one who wondered into the snow like this. I’ve done that at least 3 or 4 times. I’m glad (or sad, I’m not sure) that I’m not the only one. On the other side temperature spectrum burning hot showers are my speciality. I’m lucky that I managed to find a job with flexible hours and the ability to just space out for chunks of time reclining with sunglasses on to see if symptoms lessen before I figure out if I just need to go home and lie down. Do sunglasses help anyone else? Basically, if the sun is up or lights are on I wear them.

  14. 14
    Alethea Kuiper-Belt

    Another way you can have migraines is to have the massive headache – pain that regular painkillers won’t touch – plus some of the other symptoms, but no visual disturbances.

    I had always associated migraines with auras and visual distortions, so it took ages for mine to be diagnosed. I had all the hypersensitivities, vertigo & dysphasia but I didn’t bother mentioning that when talking to the doc about my “headaches”. I thought it was just because of the pain. Luckily for me, they were perimenopausal and seem to have gone away now. I haven’t had one for 2 years now *touches wood. crosses fingers and all that(

  15. 15
    John Moeller

    That sounds…I don’t know. If I could take inconvenient and raise it to the power of disturbing, that might give me the right word.

    A good friend of mine gets migraines (I’m not sure what kind, I learned a lot about migraines from this post), and I’ve traveled with him enough that if I hear the shower but the lights are off in the bathroom, I just leave the room quietly.

  16. 16
    Jafafa Hots

    I was diagnosed a year or so ago with “Migraine-induced vertigo” by a specialist at UCSF Medical Center, and am on meds for it.
    I usually don’t get the headache (though sometimes I do) but I get the visual disturbances along with vertigo.

    For years I had attributed it to Meniere’s, which has left me deaf in one ear. Turns out I got the two-for-one deal.
    I knew I had migraine headaches, but didn’t know there were “other kinds.”

    I’ve had problems since I was a teenager with body temperature. I overheat badly. My hands get cold and tingly all the time. Family members that have had to live with me just think I’m weird. It can be cold and I’ll be pouring off sweat. In winter I can feel perfectly warm when I’m underdressed, until something starts to feel “wrong.”

    I’ve found that I often have to stop and think “oh, it’s cold out, *I* must be cold…” and once I think that and try a forced test shiver, I can change it, suddenly I’ll FEEL cold and start shivering and do whatever I need to to get warmed up, and once I do the dizziness and “wrong feeling inside my chest” goes away and I feel normal.

    I’ve said for years that my thermostat must be broken. Now that I hear that it can be from migraine, which I have, and also from bipolar disorder, which they tell me I have… it makes me wonder.

    (I guess I’m lucky that my migraines are rarely the very painful ones.)

  17. 17
    left0ver1under

    I work with a guy who has a food allergy and is living in the wrong country for someone with it. He can’t leave until the end of the contract, yet is constantly sick. It’s easy to tell that he doesn’t want to talk about it anymore, so I usually greet him with a simple “Hi”, or if he looks down that day ask if if there’s anything he needs. Knowing the name of the illness and some of the details helps keep me from asking him stupid questions or making dumb comments.

    Here’s one thing not asked above: Most of the time those not involved shouldn’t “offer advice” if they don’t know anything. Unsolicited and useless “advice” is annoying. But how can one politely suggest something that the sufferer may have never heard of before (something obscure or perhaps it involves something illegal)?

  18. 18
    Susannah

    @shawn
    It’s interesting how often, in migraine threads, someone, or several someones, says, “I thought I was the only one.”

  19. 19
    gwen

    I’ve only had a couple of true migraines in my life. My problem is allergy, which destroyed my nursing career. It was leave or die (of anaphylaxis), and no, I don’t discuss my plethora of allergies with anyone except on a need to know basis. :( I feel your ‘pain’. :(

  20. 20
    Deborah

    People love to say “when *I* have a migraine…followed by how they cured it with some woo remedy or how just so awfully terrible it was in a way that lets you know that they don’t really get it. The people who do get it usually just say something like ohhh yeah.

    I don’t get questions about migraines, except from my boyfriend who asks me if I’ve taken something when I tell him I’m in pain (pain usually shortcircuits my reasoning about medication, which he knows, so he reminds me until I do), but I find the people who ask me if I’m ok and insist on an answer while I’m coughing my lungs out during an asthma attack really frustrating. I can be shaking an inhaler at them and have already told them that’s what it is, and they will still be asking me to answer them about whether I’m ok and trying to hand me a cough drop.

  21. 21
    Diana Lee (@somebodyhealme)

    Half a million Americans with migraines is indeed a conservative estimate. According to the American Migraine Foundation, 36 million Americans live with migraine disease.

  22. 22
    Jafafa Hots

    Oh, and as far as what people say that I dislike, the one memory from several years ago comes back to me…
    “I thought migraines were more of a ‘girl’ thing.”

  23. 23
    baal

    I also get migraines. The nausea, mild dissociation (oh that’s my arm over there…), excessive noticing of every smell (down to being able to tell my wife where she went for lunch by the lingering odor on her coat), and thermal disregulation (I get hot) are my tip offs that it’s not just a sinus infection.

    Thankfully, my migraines tend to cluster and only be really frequent every few months. I go to some rather large extremes to avoid triggering migraines including not driving on sunny days (glare can kick them off) and otherwise being extremely neurotic about reading labels and avoiding certain foods.

    I highly recommend doing the dreadful experiment of seeing if you can induce a migraine with certain things and then never ever eating them again. Specifically, sucralose and nitrites. The first is a new sweetener that’s being put in everything and the second is in essentially all pork products and most pre-cooked and pre-cut meats. Sucralose is also winding up in things like commercial tomato sauce (can only eat ‘safe’ pizza from certain vendors) FWIW, I can eat endless amounts of MSG to no ill effect (you can buy it in a jar at asian food stores).

    I liked maxalt as a med but had to switch when insurance changed. Thankfully, the new formulary had a choice of 3 as Imitrex and I don’t get along. I find the meds extremely helpful but they are clearly psychoactive for me (and generally screw up my ability to meditate (which migraines don’t)).

    Lastly, the research has gotten away from a model where migraines are related to vascular issues or the vagus nerve and are now thought to be a brain malfunction. Worse, the more migraines you have, the more you’re pre-disposed to get more. This makes identifying triggers and avoiding them that much more important.

  24. 24
    F [i'm not here, i'm gone]

    One of the things that does blow me away quite a bit is how most of this is news to people, especially doctors. I don’t have migraine problems. I don’t live in a world where I am constantly exposed to people who do. Yet I don’t find any of this hard to understand, and I am not some sort of hyperintelligent dood.

    People are amazingly ignorant, by and large.

    Aside: Last I knew, they took the good shit out of caffergot because of the 80′s drug hysteria. This pissed off quite a few people for whom the drug worked.This was one more instance of institutional stupid affecting people with real problems.

  25. 25
    Jafafa Hots

    Sucralose pisses me off seriously.
    The name and approval process and labeling requirements were specifically designed to hide the substance and disguise its use, and the FDA went right along with that plan.

    Make the name sound like a sugar or sugar alcohol (ose) when it isn’t, make it sound specifically like SUCROSE, use it in foods that have still have sugar in them so people avoiding artificial sweeteners see that the item is not sugar-free and assume…

    Require no labeling, no “contains artificial sweeteners,” etc.
    The whole thing was camouflaged and the FDA helped them do it.

  26. 26
    WMDKitty -- Survivor

    Ugh. *headbonks Stephanie*

    Migraines suck.

    Anybody else have migraines triggered by allergies/sinus pressure?

  27. 27
    latsot

    My wife suffers from chronic migraine. Her symptoms aren’t the same as yours but they’re equally shit. The medication that helps her also triggers further migraines so she always has to decide whether to mortgage her misery.

    Like any chronic illness it dictates how she has to behave if she doesn’t want to get ill. Behaving that way just reduces the risk of migraine by an amount we still can’t really calculate after 20 years. She gets migraines anyway, about once every couple of weeks, regardless of how she avoids the triggers we know about.

    A horrible condition.

  28. 28
    cactusren

    Do sunglasses help anyone else?

    I’m late to the party, I know, but I just wanted to say: Yes! I’ve taught a 3 hour Intro Biology lab with sunglasses on. The students were confused at first, but I simply announced I had a migraine and that sunglasses would help me make it through the lab. No one mentioned it again, and I managed to get through the lab before curling up in a dark, quiet room.

    I have a friend who gets migraines much more frequently than I do, and when I see her with sunglasses on indoors (or anywhere out of bright sunlight), I simply ask if there’s anything she needs.

  29. 29
    trinioler

    Oh man. I think I probably get a very minor version of these migraines of yours.

    I get issues concentrating on the screen on a continual basis. I also get the vertigo. Haven’t really had any hallucinations that I can see. I do get the fatigue and tiredness. Once, two weeks ago, it was accompanied by the “classic” migraine, with extreme sound and visual sensitivity, impaired thinking, etc. I do have persistent minor headache pains though, pretty much every day. Lights help mediate the worst pain.

    I had a depressive episode last night, so now I’m worried it was a predrome symptom. We’ll see what happens today. :/

    Thank you for writing this.

  30. 30
    nakarti

    I’ve been pretty fortunate with mine; infrequent, and I get AWIS(Alice In Wonderland Syndrome) rather than regular vertigo. And that oddly goes with fever, but not with regular heart rate/blood pressure increases (as from exercise.)

    My awis is balanced: tactile distortion makes things feel bigger, while they look like I am what’s bigger, so I can either play with the hallucination, or compensate for it and continue working while the Excedrin kicks in, (which if it doesn’t, sucks, but I rarely have debilitating migraines.)

    I actually didn’t find the AWIS connection for a long time, because a headache didn’t always follow (and didn’t always lead the migraines,) plus I thought it was associated to fever and didn’t have a good way to describe the symptoms.

    @trinioler: If you get vertigo and difficulty with visual targeting, that may actually be a reflexive compensation for mild hallucination. Keep in mind that hallucination doesn’t mean seeing monsters and weird colors; it can be as simple as hearing things that aren’t there, or objects appearing to be closer or farther than they actually are. (The digital modulation warble in sports broadcasts is real though, I swear!)

  1. 31
    How Not to Handle Migraines » Almost Diamonds

    [...] mentioned in my post last week on migraines that there would be a carnival on pet peeves this week. It’s up now for those of you who [...]

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