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Wednesday, October 9, 2013

57

Brain Trouble

I am 22 when it first occurs to me that migraines will impede my projected path through life. It is the first week of my first real job. My business card says Rural Reporter, which distinguishes me from the Education Reporter and the Business Reporter and the Crime Reporter, but really we are all rural reporters, at a tiny newspaper in a town you’ve never heard of, tucked away in the foothills of the Washington Cascades. Thanks to a nearby spearmint factory, which refines the sweet oil used in candies and toothpaste, the whole town smells like a pack of gum left on a car dashboard on a hot summer day.

I find myself on a tour with two women from the local chamber of commerce. I am riding shotgun in an oversized Cadillac, nodding dutifully as they point out the sights, but the mint smell, suddenly unbearable, overwhelms me. The sun lasers through the windshield and into my eyeballs. The pain begins to pulse. In a few minutes, it has surged across the left side of my head. My stomach clenches. After a few more minutes, I can muster no more enthusiastic nods. We are just passing the mayor’s house when I ask to pull over.

I have years of practice at making hasty retreats to bathrooms or secluded trash cans. Sometimes I travel with a wadded grocery bag in my purse, or one of the sleek, wax-paper barf bags I collect from airplane seat pockets when I fly. But today I have no bag. I barely have time to scoot off the Cadillac’s leather seat and step onto the mayor’s lawn. I have no time even to crouch. I puke standing up, which I know means there will be a backsplash. It hits the ground, splatters my black loafers and trails up the hems of my good black pants—formerly my interview pants, recently promoted to work pants.

I explain to the ladies from the chamber of commerce that I get migraines, and that bright lights and strong smells sometimes trigger an attack. They nod at me blankly while I wipe my shoes on a clean section of grass. Then they drive me back to the newspaper office, where I sheepishly tell my new boss that I have to go home and lie down, that I probably won’t be back for another two days. I don’t even know whether I have sick time yet. All I know is that I need to find a dark room and curl up in it. He tells me to go.

•••
More than 36 million Americans suffer from migraines, but because a staggering 27 million of us are female, the disorder is largely relegated to the dusty medical designation of “women’s issue.” It gets short shrift when it comes to research funding: this year’s National Institutes of Health budget includes $458 million for alcoholism research, $230 million for asthma, and $219 million for tuberculosis—but only $18 million for migraines. Even among neurological disorders, migraines get less funding than devastating but much less common disorders such as Parkinson’s ($155 million), which affects roughly one million Americans. As a result, migraines are simultaneously one of the most common and the least understood disorders of our day, with startlingly limited treatment options.

Dr. Audrey Halpern, a neurologist and migraine specialist who teaches at the New York University School of Medicine, is stunned by the low priority placed on migraines—especially considering that nearly one in five women is regularly sent scuttling home from work, or puking on her pants, because of them.

“I do believe that because so many sufferers are women, it has been swept under the rug, not taken seriously. ‘Not tonight, I have a headache,’ was seen as just an excuse,” Halpern told me recently. She decided to specialize in migraine as a neurology resident at Yale in 2002, and when she informed one of the chief neurologists, he laughed at her choice. “Even just a decade ago, many neurologists did not believe that migraine was a neurological condition, and certainly not one that was worthy of any significant attention.”

Today there is no doubt that migraines are neurological, although the specific cause remains murky. Most doctors believe the condition is genetic and related to some structural or chemical dysfunction in the brain. And that dysfunction may not be the same for men and women. A recent study of migraine sufferers of both sexes by Harvard researcher Nasim Maleki found the women’s brains so different from the men’s that their migraines were essentially “different diseases altogether." In women, the areas of the brain responsible for motor processing and pain perception were much thicker and more interconnected than for men with migraines, or for non-migraneurs male or female.

Studies like Maleki's are important, but few and far between. As of now, doctors haven’t advanced very far beyond the physicians of the Middle Ages, who drilled holes in the heads of migraine sufferers to release the evil spirits banging around inside. For sufferers, sometimes, it still seems like a pretty good option.

Compare migraines to breast cancer, another prominent "women’s issue" that does get a fair amount of funding. Halpern explains that this may be partly due to the fact that breast cancer is potentially fatal, and partly due to the prevailing bias in the medical community for definitively diagnosable disorders. A tumor, after all, will show up on an MRI. A migraine will not. It can only be diagnosed by listening to a patient who says she is in pain—and believing her.

Everyone's a skeptic: most people who hear the word “migraine” translate it to “headache,” and expect us to take an aspirin and get back to work. They sometimes assume we are ignorant or unable to care for our own minor health problems. I have had bosses, teachers, and coaches urge me to exercise more, rest more, drink more coffee, drink less coffee, avoid milk, avoid gluten, avoid citrus, try acupuncture, see a chiropractor, inhale lavender, or press the spot on my hand between thumb and forefinger. I've tried all those things, along with everything else.

Some people assume we are lazy or flaky, using a headache as an excuse to shirk. I had an editor so suspicious of my migraines that, when I called in sick with one on my 29th birthday, she lectured me on taking my work seriously—assuming, I suppose, that “migraine” was code for “hangover.” As a type-A achiever who works through all but ER-level pain, this riles me. Joan Didion put it succinctly in her excellent essay on migraines, “In Bed”: “Nothing so tends to prolong an attack as the accusing eye of someone who has never had one.”

•••
Migraines inflict pain by making blood vessels around the brain swell up like so many pythons swallowing hippos. When I feel one coming on—it happens once or twice a week—I take medications that constrict my blood vessels. These are sometimes effective and sometimes not. When a migraine withstands medication, it will last for 48 bedridden, anguished hours. In a dark and preferably cold room, I lie as still as possible to keep from startling my stomach, which, like a wild animal, is easily provoked by sudden movement.

Some people have had luck with preventive medications, but most of these are repurposed drugs, originally introduced in previous decades for entirely different disorders. I have taken drugs initially intended to treat, in turn: seizures, high blood pressure, depression, cardiac arrhythmia, anxiety, angina and psychosis. None made a dent in my migraines.

I have also volunteered for three different clinical trials of new (or newly repurposed) migraine medications. Two had no effect; one had the effect of waking me in the middle of the first night I took it, feeling like I had been kidnapped by carnies and strapped to a Gravitron floor. The intensity of that vertigo, which pinned me to my bed and prevented me from even being able to speak, was one of the few experiences in my life worse than getting a migraine. I dropped out of the study the next day.

•••
Somehow, until my late twenties, I never identified myself as a migraine sufferer. Even now, I think of migraine as something that just happens, a twice-weekly fluke that is still not part of my identity. This although I cannot leave the house without a purse full of pills; although my father has called me “Barferina” since my middle school years, when I developed my flair for projectile vomiting; although my friends refer to me, somewhat more graciously, as a “fragile flower.”

I resent the ways my migraines have shaped my personality. Only now, 20 years after my first migraine at age 12, do I fully recognize the insidious force that has made me less ambitious over time, less adventurous, and less fun. I no longer stay up past midnight, since disrupting my sleep schedule is a migraine trigger. At parties, I drink club soda out of a tumbler that I can pretend is a vodka tonic, so I don’t look like a wet blanket before slinking out at 11:30. I have learned the hard way that altitude changes will trigger a migraine, which cuts down on my air travel and mountain climbing. I’m the one who won’t just order Chinese takeout with everyone else, but will say something obnoxious like, “I know they say there’s no MSG, but there probably is, and I’m very sensitive to it.”

Nobody likes that guy, I know, especially when she's a woman. I have seen the eye rolls. I know there are no flattering portrayals of migraine sufferers on TV or in movies. In fact, screenwriters seem to use invisible, chronic ailments like migraine as shorthand for neurosis. The movie Sleepless in Seattle annoys me, in part, because I identify with Meg Ryan’s jilted fiancé, who suffers from severe allergies and never wants to do anything fun. The latter symptom seems to cause the former: we are led to believe that if he were more interested in fun, he wouldn’t have gotten himself a medical condition that precludes it. We are supposed to root instead for Tom Hanks, who is, it seems, immune to such ailments by virtue of his more lively personality.

There can be no romantic comedies with a migraine-troubled heroine. What if Ryan's Annie was supposed to meet Tom Hanks at the top of the Empire State Building but found herself instead stuck puking in the bathrooms at Grand Central Station?

I have puked in those bathrooms. It is not cinematic.

Over time, I have reconciled myself to seeming a lousy character. I have not yet reconciled myself to being a lousy friend; the kind who might not make it to your wedding or show up to walk your dog while you are on vacation. These days I hardly ever make firm plans in advance, so I won’t have to cancel at the last minute and let someone down, again.

•••
As it turns out, my first boss is sympathetic to my plight. He suggests that, if I get another migraine, I could lie down on the couch in the lounge area we call the Reporter Rumpus Room. It is just off the main newsroom, which means it is loud and highly trafficked, and it’s on the side of the building that gets direct sun for most of the day—not an ideal place to weather a migraine. But I appreciate the sentiment, just as I appreciate my parents’ instinct to pile blankets on me when I get a migraine while visiting them, since they still confuse "migraine" with "the flu."

This is the best response I can hope for: that instead of trying to cure me—Try feverfew! Vitamin D! Brain surgery!—the people in my life will simply accept my migraines and try to help me cope. I understand the desire for a simple fix. I’m still struggling to accept my migraines, too, still fighting the way my world shrinks around me when I acknowledge the limitations they impose.

Despite my boss’s understanding, I am eager to prove myself on the job. My next migraine coincides with my assignment to cover the Toledo (Washington) Cheese Days Festival. I find myself standing again under a blazing sun, watching people parade through town dressed as wedges and wheels of cheese. Fortunately, the parade route is dotted with blue metal trash bins. I make a beeline for these between interviews. At the parade’s end, I am offered a cheese sandwich. I decline, and race home to file my story from a cold, dark room.

 

Photo via migrainechick/flickr.

Jennifer Latson is writing a narrative nonfiction book about a genetic disorder called Williams syndrome, which makes people socially uninhibited and indiscriminately friendly. She tweets at @JennieLatson.



57 Comments / Post A Comment

adorable-eggplant

Cheese Days Festival with parade! Free cheese sandwich (sorry you had to decline). Clearly I am living in the wrong city.

adorable-eggplant

@adorable-eggplant Also, interview to work pants. I'm wearing those right now. Loved so many of the details in this piece.

mattewmc

Really good this article @t

becky@twitter

bright lights and too much computer use trigger mine. ugh, i hate migraines.

honey cowl

This is excellent.

autumng

I know you have heard everything, but I'm in the same boat you are and thought I might throw an idea your way. A couple of months ago I had what I assumed was a major ear infection in both ears, but my ENT said my ears were perfect and that it's possible I have TMJ which could also cause my migraines.

I visited a TMJ doctor and he confirmed that my jaws weren't aligned and that the cartilage on my right side had moved outside the joint. Three weeks ago I started wearing an expensive TMJ mouth guard that I will wear 24 hours a day (except for when I'm eating and brushing my teeth) for six months.

I hope beyond hope that this will fix my problems. Last year I went through a four month period of a 24-hour migraine. I just could not kick it. It's the only time in my life I've ever considered suicide. I hope to never go through that again. Now I take the random migraines and go with it as I definitely prefer it to the alternative. However, cross fingers this ugly, bulky TMJ brace works. Maybe go get your jaw checked out?

Sorry for the rambling. My (daily) headache gets worse in the afternoon after staring at the computer screen all day. Makes it hard to focus.

ohfrack

@autumng

I hate to be that person... but just throwing this out there for peeps, there is research being done on estim and tens for migraines. Basically it's electrical stimulation (and also they're looking into magnetic stimulation as well).

I don't know if I get migraines per se, but I do sometimes get "these headaches" that won't go away and are very unpleasant and last for days. It's almost always emotionally linked for me, and is really weird because they can "leave" in an instant if I feel really loved. (Weird, I know). But they're really tenacious and suck bad.

I do sense that if my brain were stimulated in some way (electrically/magnetically/chemically) that would work, as sometimes also the pain "moves around". But I did a lot of brain research recently because someone close to me had a stroke, so I got all into the latest research on the brain. And this looks very promising to me... they are doing this also to treat aphasia (where your learned skill of talking is wiped clean, and you can't talk anymore). The brain is a really funny/strange organ.

Also, my little trick that "helps" to alleviate pain (since it isn't always easy to get someone to direct "healing" pure directed unconditional love thru touch my way, or to lift the pain-cloud myself) is to go in the shower, and put my head under really hot water, than change to really cold. Really hot again, then really (really) cold. I figure that messes with the blood vessels and anyway it can sometimes reduce the pain level to "if I just lie here and don't move and don't think bad thoughts about the pain, this is kind of okay as long as I don't move and just stay reaaaalll still here in the quiet or with only noise that are niiiiiccce goood noises, no, nope no noise, okay ok, I'm okay here still-like." Which is an improvement on before hot-cold-hot-cold brain shower when I'm like "just why won't it stop!!!! mutherfuckin' stop already!!!"

skippersarah

@autumng I had jaw surgery when I turned 18 because of an open bite (was misdiagnosed as TMJ for about 5 years) that caused chronic migraines. Best $40,000 my parents' insurance ever spent. No more migraines until I developed food allergies, and at least I can control those through diets.

empathicalist

I feel ya, sister. All of my sick and vacation time for the year is used. I've done all that I can to improve my health, but some things truly are out of our control. Nasty gossip-mongers assume that I'm lazy and lying, and spew their bile to everyone. If I miss one more day, I lose my job. On a side note, stress exacerbates my condition(s). So much fun.

Mariajoseh

My cousin has Williams syndrome! and no one ever knows what that is when I tell them about it... I really look forward to reading your book on it, since this article was really great.

myeviltwin

@Mariajoseh Agreed - can't wait to see something on Williams syndrome!

Bunburying

Great piece, and I'm sorry you have to deal with this. I don't get migraines, but I completely sympathize with being in the position of having an invisible ailment that attracts unwanted and unhelpful advice from well-meaning but ignorant people, and makes you "unfun." I have no advice except "fuck the haters." Come over anytime, we can have a club soda party.

YoungCrone

I feel compelled to repeat the same comment I made on the other migraine post earlier this week, just because it applies to both:

I inherited my migraines from my mother. The way she tells it, she couldn't get any doctors to take her migraines seriously--I don't think the drugs I take today had even been developed yet, or at least no one prescribed them for her. Migraines were just one of those things that women imagined to get attention. So twice a month she would have to hole up and vomit for three days straight. For attention.

Eyre Apparent

@YoungCrone I dated an guy who thought I got sick, had migraines and/or debilitating mentstrual cramps so regularly because it was the only way I had found to get attention when I was a child and I had sublimated that as an adult. Yeah, I love attention when I'm retching into a bowl. Who doesn't?

Sella Turcica

@YoungCrone Oh yeah. My lupus is the same thing. I was so good at faking sick I ended up needing a kidney transplant. I think that is, like, ninja level fake-outs there.
People are douchebags sometimes.

YoungCrone

@Sella Turcica :( That's awful. I hope that your new kidney serves you well and that you start magically repelling douchebags.

tmmoore

Thank you, goddammit. It's good to know I'm not alone in worrying that I'm the most boring person on the planet because of my migraines.

hello world

THIS. ALL OF THIS.

I am so glad you wrote this piece. I have been suffering from migraines for years. I've also had a boss lecture me, thinking "migraine" translated to "hangover." Equally infuriating are people who think "migraine" translates to "mild headache" and tell me I should just take an Excedrin or drink a can of Coke.

I have a demanding job now, while also a full-time graduate student. I've had to give conference presentations while unable to see straight, and trying not to barf. I honestly have no idea how this is going to work out. In any case, it's nice to know I'm not alone.

celeec4@twitter

@hello world YES, and sometimes they mean well. Then I just laugh despairingly and go, yeah, no, one of my personal signs it's gonna be a migraine and not just a terrible headache is that Excedrin/ibuprofen/all the painkillers + chugging coffee no longer works.

siniichulok

Whenever someone suggests that I could make it all better the "natural" way if I wanted to by pressing the spot between my thumb and forefinger, I just want to grab theirs and squeeze it painfully and meanly because it makes me so angry. IT DOES NOT WORK, A$$HOLES.(Sorry.)I feel the same when they suggest meditation for my migraines.

siniichulok

@siniichulok Not to knock meditation, though--it is awesome, and I do it (though my Feels in my previous statement might make that seem doubtful). I am just so freaking tired of people having no clue and suggesting useless things and believing that if I'd just do whatever it is I wouldn't have my problem. Or else not believing that it's a real problem. I always suspected that it's partly because migraines are primarily a "women's" ailment, and it's nice to see that confirmed by someone else.

prefer not to say

@siniichulok Oh, amen. I spent most of my life not realizing that what migraine sufferers deserve the most sympathy for isn't the excruciating pain, but putting up with reactions that partake equally of cluelessness and of the inevitable "Oh, but have you tried . . . ?" Then I met my partner, whose severe migraines morphed into a much worse condition. Now I want to slug anyone within a 100 foot radius who ever so much as utters the words "Oh, but have you tried . . . ?" Srsly, bitch? This condition that's dominated our entire lives and drained our bank account? You think we've just been sitting here doing nothing until a random stranger at a cocktail party comes up with a solution to our problem? (and it's almost always bio-feedback. Or Juiceplus (TM) Saints preserve us from the Juiceplus people).

Elleander Morning

This was so interesting. My mother and sister both get migraines (I have a particularly vivid memory of Mom driving me to drivers training class while puking because of one, so that I could get my license and drive myself and my sister places next time she had a migraine). I have skipped this genetic land mine somehow and I'm very thankful.

I don't know how anyone who's seen someone suffering a migraine could not believe its real. I'd never considered that it could be seen as a "women's problem" but...sadly, that's about the only thing I can think of that would explain that attitude.

gingerjeg

A great blog written by a migraine sufferer in London is MIGRAINE MONOLOGUES (http://www.migrainemonologues.com/) Useful information and really funny!

de Pizan

On the fragile flower thing, my mom always used to introduce me as "the puny one." Because of my being prone to minor illnesses at the drop of a hat, chronic pain conditions, migraines and whatever else my body decided to try on. I think I finally convinced her to stop it.

mockingbird

I've had migraines since I was 18. Every few years they mutate and I get new symptoms. Speech slurring, muscle weakness, lack of coordination, inability to think, vertigo that can vary from being a little light headed to the level of when you're so drunk you can barely stand up and the world won't stay still. And I go blind to the left, which is the main reason I take off work when I have one as driving like that is dangerous. A neurologist several years ago diagnosed me as having basilar artery migraines, which was nice because I finally had a name for the stroke-like hell I went through but bad because it mean all triptans were off limits for me because they can cause an infarction. So, when I get one, there's nothing I can take to stop it. I went through all the preventives Jennifer mentions, some helped for a time, some had side effects bad enough to make any reduction in migraines not worth it. One made me lose the ability to parallel park, one made me forget my own name, one made me shake like a junkie, one made my skull go numb. The only thing that works is an Alzheimer's drug called Namenda, which I have to get from Canada because my insurance company refuses to believe two neurologists saying they really have tried everything else on me. I still get migraines, I've had one now for a couple weeks and wonder how my friends with chronic daily migraines lasting years have refrained from killing everyone. For me, it's not the pain, I can work feeling like my brain is trying to explode from my skull. What stops me is everything else, how I can't think straight and lose coordination so typing is near impossible, how I run into walls because I can't quite aim for the doorway, how my tongue feels thick and slow and speaking is complicated. My migraines are stress triggered and hit when a situation is over so I can usually look forward to being miserable when I should be feeling relieved. Migraines are the reason my parents have had to help cover my insurance and medical costs, and the reason I hit the out of pocket maximum every single year. Without treatment I'd be unable to function.

lemonsquare

To add to the anecdotal pile... I started getting migraines in high school. They happened once or twice a month for several years after that. My doctor back then told me that if I was getting them that young, they would probably continue for the rest of my life. They were totally debilitating and the only thing that worked to stomp out the nausea, pain and mild hallucinations was a combination of anti-nausea suppositories and caffeine-laced barbiturates. When my doctor in college tried to switch me over to non-addictive medications, they made the migraines worse or had bizarre side effects (one medication made me temporarily forget how to operate the faucets in my apartment). The new doctor would scoff at me when I showed up puking and crying and told me I should be "happy" because "some people get migraines every day." Uh, okay?

I could never figure out the trigger for my migraines. Or there were so many triggers, everything was a trigger! After college I started drinking coffee regularly... not a lot, just a cup a day. My migraines were gone within a year. I've had only one migraine in the last 5 years. I can't be sure it was the daily caffeine that did it, but just in case... I try to drink a cup of coffee a day or every couple days. The triggers, symptoms and management strategies are so wildly different for everyone, it seems that most of the time treatment is just a shot in the dark.

Weirdly, once my migraines had almost vanished, my husband started getting them. He doesn't get them all that often but they're pretty bad.

royaljunk

@lemonsquare YES. I Do Not Accept any studies about how terrible caffeine is because seriously, it's amazing. I've had migraines since I was 11 and have yet to find medication that helps even a little, but I've noticed regular coffee/soda really does make a difference.

Also, cup of coffee/can of Dr. Pepper + Advil is a magical elixir and the ONLY thing that helps my cramps.

skippersarah

About a year and a half ago I realized that I'd been regularly getting migraines for about six months, but up till that point if you'd asked me if I got migraines I'd have said no. Luckily my migraines turned out to be a symptom of my food allergies and are controlled with diet. But I still feel (felt) your pain.

Debris

I wanted to comment on the migraine post the other day, but I couldn't because I was having a migraine. I did not start getting them until my late 30s, and they are definitely timed with my hormones( period week, ovulation week) which leaves me with roughly two weeks a month with no migraine.
Funny thing, my insurance company has decided for me that 9 migraines a month is what I am allowed, and will only cover 9 imitrex monthly. So I am in constant fear of not having enough magic pills, or being somewhere without them.
I can sympathize with trying all the prophylactic meds to no avail, along with everyone's judgmental advice.
Truth is, migraines have completely changed my personality and lifestyle.

anachronistique

Suuuuuuuuch a good post. My mother suffers from severe migraines on the regular and has since I was little, and they've gotten worse as she's gotten older. She has tried literally everything on the market to stop them or lessen the intensity. The latest effort: Botox injections all over her head to try and stop the muscles locking up. Didn't really help. That plus other health issues have ended up rendering her effectively disabled at this point, and it makes me so goddamned mad that there is nothing we can do for her except keep quiet and not cook anything smelly when she's knocked out. She missed a lot of stuff when I was a kid because she couldn't get out of bed - performances, that sort of thing.

I get migraines as well, but on the order of something like twice a year. I am terrified that they will start showing up more frequently and I'll end up like my mom.

missupright

Such an amazing post I had to log in to comment. I only just realised that my chronic health condition/medication side-effects might have an affect on my career path, and it's a very weird feeling.

Also, having spent Friday-Monday lying in a dark room whimpering, I feel you, and sympathy.

Corielle Hayley@facebook

I suffered terrible migraines when I hit puberty, usually 1-2 a month. They petered out in my early 20s, and I rarely have them now. I was lucky in that they seem to affect most of the women in my family from around 12 to 22 years old, so my otherwise "suck it up" mother was generally sympathetic. Sucked when I started working though.

oopsydaisy

A few years ago I had my wisdom teeth taken out. Because of the angle they were erupting at, they cracked two adjacent molars, which also had to be extracted. Months later, I developed really odd tooth sensitivity and jaw pain. The pain could be triggered by hot or cold temperatures, by vigorous exercise, by stress, and sometimes there didn't appear to be a trigger at all. The pain was completely unbearable, like, not something you could just take an aspirin or two for and get on with your life. At one point I was taking so much ibuprofen that I seriously started to worry about liver damage.

For whatever reason, I haven't had an attack in about a year. But the whole experience, from the pain itself, to my inability to treat and manage it, was a nightmare. Doctors and dentists couldn't find the source of the pain and probably thought I was nuts. Somebody recommended antidepressants.

The only two things that worked were: marijuana (lots of it!) and capsacin applied at my temples. I always keep both items on hand in case I ever get another attack. During the times when the pain was really, really bad, I developed a lot of sympathy for people who suffer from migraines. Unless you experience a condition like that, where the pain is spontaneous, unmanageable, and crippling, it's hard to understand just how serious it is.

Caitlin Podiak

@oopsydaisy "In The Principles and Practice of Medicine first published in 1892, Dr. Sir William Osler ['father of internal medicine'] (1849-1919) wrote with regards to the problem of migraine headaches that 'Cannabis indica is probably the most satisfactory remedy. Seguin recommends a prolonged course of the drug.' Osler was referring to Edward Constant Seguin (1843-1898), the president of the New York Neurological Society and Columbia College of Physicians and Surgeons professor who was a vocal proponent of cannabis for migraine."

RachelTheC

i didnt think i got migranes-- i thought it was my normal reaction to existence/ hormones/ polycarbonite lenses in my glasses to puke and have a crippling headache for days. the best things for me are hormonal birth control, and coffee. but everybody is completely different. i know both those severely fuck up a friend of mine.

Nutellaface

I got my first migraine when I was 17, and I thought I was dying. Then I had to ride on a coach bus with my entire high school choir for an hour and a half.

I got a migraine on the morning of my wedding.

I got a migraine at an important business meeting two days ago.

I only have 9 pills per month to get me through, and sometimes I run out, and sometimes I ALMOST run out and then have to decide if a migraine is "pill-worthy."

The beginning of my period became so hellish that I started using my NuvaRings back to back so that I never have to go through the hormone withdrawal.

Fuck you, migraines.

EM87

@Nutellaface That sounds so awful!! Using NuvaRings back to back is a good idea-- I'm a contraception counsellor at a sexual health clinic and one of the things we learned is that there is no physiological reason why you need to "take a break" from your birth control to get a simulated period. It's totally arbitrary. If getting your period is a trigger, by all means, skip your periods!

Nutellaface

@ponymalta Thanks for the thumbs up! I just sort of started doing that as an experiment, with very little regard to medical facts.

Laurenr

Mom got them her whole life and I get them too. The only thing that works for either of us is a cocktail of Relpax (expensive but you can find a discount card online) and Zofran (for nausea). This combo has literally saved my life. My mom and I totally hoard boxes of Relpax in the paralyzing terror that for whatever reason, they'll just stop making it someday.

Scandyhoovian

My maternal grandfather got migraines, and my sister apparently inherited them. She gets them fairly regularly, and they always knock her out. Changes in the weather are her most frequent trigger. For me, I get them very, very infrequently, and they are always triggered by stress. I had one a few days after my oral comps for my MA, and I had one last Wednesday (my husband got laid off last Tuesday). I am thankful, knowing how frequently my sister gets them, that my own come infrequently. When they do, they kick the shit out of me. Light and sound sensitivity and eventual vomiting are things that no one enjoys.

Daisyy

Well migrane is a great problem. I have seen my grand father suffer through it. It was not very common before but now it is really common. I think its because of the extensive use of computers and TV's kind of stuff. Well its good to see that people are identifying different possibilities that cause the migrane.

Thanks for sharing
PHD Daisy
Antique Stores

Mingus_Thurber

THANK YOU FOR THIS.

I'm a neuroscience nurse working in a neurocritical care unit. One of the things we deal with all the time is chronic migraine. We occasionally get folks with chronic cluster headaches, but migraines are the big thing that will bring people in for days at a time.

We use dihydroergotamine (DHE) IV, lidocaine drips, beta-blockers, Imitrex, Namenda, caffeine infusions, a Benadryl and Reglan protocol, dry-needling, physical therapy, psychological counselling and biofeedback. . .and sometimes something will work. Most of the time, though, the women--and 99% of my returning patients are women--who have migraines just learn to deal with them, the way you have.

Watching someone who's in so much pain that they can't even move their arm to shield their eyes from the light, but instead just sort of twitches miserably is awful. What's worse, in a way, is how many of my patients have learned to behave somewhat normally, even during an attack, so they don't lose jobs or alienate their families or lose custody of their children. They can smile and nod and act *almost* okay, which makes other people disbelieve them even more.

Chronic pain is a bitch. Chronic pain that's unrelated to a visible injury and has been typified as a woman's or malingerer's problem is even worse. I wish I could wave a wand and make the migraines stop. Or, at least, offer some sort of therapy that's actually effective.

YoungCrone

@Mingus_Thurber

"They can smile and nod and act *almost* okay, which makes other people disbelieve them even more."

Oh man, I just teared up. (T_T) It's so true. How many times have I propped myself up in the one position where it hurts less, and held very still, and tried to act normal because I was afraid people would dislike me if I was being a drama queen, and then worried that they dislike me because they think I'm faking the pain and should just suck it up.

And bless you for helping the migraineurs.

863803430@twitter

Having just got back this morning from a 2 day business trip to the West Coast with a wretched headache (maybe migraine) that began yesterday during my daylong meeting, I commiserate completely with the migraine impeding work issue. Actually, I was able to hold it together fine through the meeting itself, but by the time I got to the airport, I felt like death and actually fell asleep on the seats at San Francisco airport (underneath those horrible fluorescent lights), luckily waking up in time to board my flight. What worries me a bit is how travel for work messes with my eating schedule. When I don't eat regularly or enough, than I'm pretty sure to get a migraine and sometimes, with time differences and work trips, it's just not possible to eat the way I would at home (side note: what is the deal these days with people at work meetings only eating 1/2 of a sandwich and making me feel like a hog for wanting a whole sandwich? It's not even a gender thing as both men and women do it. I think it's out of misguided politeness even when there's tons of food.).. So that worries me, because I like to travel, have to do it for work, and want to be able to do so without losing a day on the other side of it due to being wiped out.

Veronica Mars is smarter than me

Oh man, I"m so late to this conversation. I really liked this piece as a personal narrative of a migraineur. There were a lot of things that really struck a chord for me and I like Jennifer's voice. But I think it's worth mentioning that the factual/research parts of this piece are... debatable, at the least.

I completely agree that sufferers of invisible diseases, especially female sufferers, are often treated poorly and met with skepticism--if not straight out disbelief--of the reality of their pain and other symptoms. But saying that migraines are under-researched because so many sufferers are women is inaccurate (obviously this is an important factor! But identifying that ONE factor as THE factor isn't correct). Saying that "many neurologists" didn't believe migraines to be a neurological condition as recently as ten years ago, while probably technically correct (I mean, there are some really shitty doctors out there! Especially the ones who graduated medical school close to half a century ago! A dozen doctors could count as "many."), is misleading. The neurological community has accepted migraines as a neurological condition--albeit a terribly insufficiently understood condition--for many decades. It's also misleading to say that there are so few treatment options. While it's true that the number of treatments which were specifically designed with migraines in mind is practically nil, there are so many prescription treatments (mostly off-label) for migraines! And that's kind of how medical/pharma research works a lot of the time: you find an unanticipated side effect of a drug you designed for a heart condition, which turns out to help a lot of migraine sufferers. That doesn't discount the fact that the cardiac drug then IS a treatment for migraine.

Now, let's be clear: I'm not saying that migraines are easily treatable. I'm not saying that they are well understood. I'm not saying that it doesn't suck an impossible amount to be a migraineur. I speak for a loved one who has suffered from headaches and migraines for a decade, who has been debilitated by the pain and adjacent symptoms, who has found no treatment that can do anything more than slightly dull the unbearable symptoms, whose life has been completely upturned by this suffering, whose potential was essentially erased in the start of adulthood because of these headaches, who has a family history of migraines. We have an acute awareness of what it means to be a migraineur; but we don't think the more "factual" parts of this piece were particularly well-researched or well-presented.

drainmasterla

Hi Jennifer,

I really appreciate your efforts in sharing this post. I do agree with migraines inflict pain by making blood vessels around the brain. It really seem like your half brain is in danger zone.

I too get same symtoms. Thank you for sharing :)
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Best Regards,
Brian

Nicholas Oxenham

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Regards.
Nicholas Oxenham

Nicholas Oxenham

Hey Jennifer !
I needed to put you one very little note to say thank you the moment again relating to the pretty secrets you've documented on this page. It is certainly seriously generous of you to supply unhampered exactly what a number of people would have marketed as an e-book in making some money for their own end, primarily considering the fact that you might well have done it in the event you wanted. Those basics in addition served to become a great way to comprehend other individuals have a similar fervor really like mine to find out great deal more on the topic of this condition. I know there are thousands of more pleasant situations up front for individuals who go through your site.
Here is site must check it
Create mobile apps
Regards.
Nicholas Oxenham

Caleb Struth

God job Jennifer! I'm really enjoying the design and layout of your blog. It's a very easy on the eyes which makes it much more pleasant for me to come here and visit more often. Did you hire out a developer to create your theme?Posted on November 5, 2013 at 11:46 am

drainmasterla

Hello Jennifer!

Migraines really something that kills you a whole half head pain. I was searching for a long time about cure for it but nothing makes me comfortable on it. I really appreciate you shared this post with us printhead friendly

Warm Regards,
Brian

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