Home > Making Disability Visible > Not Just a Headache

Not Just a Headache

Hi folks. Last Friday I had a botox treatment for my migraines and it does seem to be having some good effects already. I’m going to give myself another day or so off from blogging since the computer can be one of my migraine triggers.

Please let me stop you before you get a chance to write that clever comment about how at least I’ll always have a youthful appearance because of the botox treatments, or some such other clever riposte. I have heard them all. FYI, botox treatments for migraine have nothing in common with beauty treatments, and I had to fight tooth and nail with my insurance company to get them to pay for it because of that very suspicion. Yeah, you know, that migrainous stroke and all those drugs I’ve been taking for the past three years were just a decoy to get you to pay for my beauty treatment at my neurologist’s office.

I’m thinking, however, this might be the first in an occasional series of posts on things relating to disability, which is seemingly completely unrelated to the issue of gender and science. Except for the fact that many, many, many women end up with chronic disabling illnesses, and women in science are no exception, so it’s tangentially related. Plus, it’s my blog, so what the hell. Also, I think engineers have a special duty to increase the options available for those with disabilities, and to make the concept of universal design our starting point in everything we make or do. Because, as they say, disability is the one category we all have access to. It’s pretty much just a matter of time.

Anyway, while I’m out hoping that having had botulism toxin injected into my scalp and neck keeps me from having migraines every single day, here’s a mini-list of things you should never, ever, ever say to someone with disabling migraines (“the invisible disability”), especially if she/he has lost her/his job because of said migraines:

  1. Well, it’s just a headache.
  2. You don’t look like you had a stroke to me. (said by acquaintances and a nurse!) (well, you can’t see partial blindness and disabling migraines, now can you?)
  3. So, tell me about this so-called stroke you say you had. (said by a doctor!)
  4. Wow, it must be nice to get to stay at home all the time!
  5. Hey, at least you’ll get to enjoy the summer and hang out by the pool!
  6. You are so lucky! I wish I didn’t have to go to work!
  7. You are so lucky! Stay home and just have some headaches? That sounds great!
  8. Wow, you know, if you think about it, it doesn’t sound so bad. (what the f–????????)
  9. Hey, you get to have those botox treatments for free! Just think, when we’re all old and wrinkled, you’ll still have beautiful skin!

And, finally…my brother’s girlfriend’s aunt’s cousin has migraines and she swears by this treatment… I know some of my readers have already written to me with suggestions for treatments I should try, and I know you have meant well, and I do not wish to hurt your feelings. I only want to explain why I, at least, don’t want you to do it anymore. Consider this a public service announcement on behalf of people with migraines.

Migraines are a disease. It’s a disease that can be completely disabling. In his book, Migraine, Oliver Sacks quotes Aretaeus on the condition of the migraineur: “…life becomes a burden.”

Many things generalize, but each person will also have some particular issues. In my case, many of the treatments that work for other people – the wonderful new generation of migraine-abortive medications you see advertised on t.v. – are forbidden to me because they are vasoconstrictors and are too risky for someone who’s had a stroke. Conversely, one of the preventive meds I take is forbidden for my husband, who has migraines, because he also has kidney stones. I see a neurologist who specializes in migraine; he’s one of the nation’s top migraine dudes, he knows all the research, and for a special case like me, that’s necessary. For my husband, with “regular” frequent, crippling migraines and the kidney stone complication, he sees a neurologist with experience in migraine, but who is not at a major headache clinic. He can take the nifty migraine-abortive triptan drugs I can’t, and they work miracles for him. I would recommend that anyone who has migraines should be seen by someone who specializes in migraine, usually a neurologist, who will also coordinate their care with their primary care physician. Women with migraine with aura especially need to see a specialist because they are at increased risk for stroke. If you have migraine with aura, stop smoking (stop smoking even if you are a purple Martian with no aura), stop using over-the-counter decongestents (they increase your BP), you should probably stop using oral contraceptives, and go see a migraine specialist. I am not a doctor. This is not medical advice. Go see a doctor for medical advice.

Here are three good reasons to refrain from offering treatment recommendations to migraine sufferers.

  • You don’t know how the treatment you’re recommending might interact with the medical history of the person you’re recommending it to.
  • You don’t know how it might interact with other medications they are taking.
  • You probably wouldn’t casually recommend that someone switch their current treatment to what your friend’s sister does if they were suffering from cancer. You’d think someone with cancer should see a specialist and maybe look into the latest clinical trials. Someone with migraines should be given the exact same advice – see a specialist, and look into the latest clinical trials.

If Aunt Edna’s herb tea works for her, that is great. Be happy for Aunt Edna. But for your friend with migraine, what you should offer is sympathy and a listening ear – and urge them to see a specialist if they aren’t already. There is real help available now for migraineurs, even better than 5 or 10 years ago. We don’t have to suffer in silence, if we get appropriate treatment, and if our friends will just listen a little, rather than try to cure us – or tell us how lucky we are.

  1. khan
    October 2, 2006 at 9:58 pm

    — # Well, it’s just a headache. —
    My migraines were of much less intensity than yours and (lucky for me) mine can be controlled by lifestyle changes.
    Best wishes.

  2. October 2, 2006 at 10:08 pm

    My little son has had botox injections in his calves for severe spasticity. It’s a real pain that the “botox parties” are making it hard to get for legitimate medical uses.

  3. Periphrasis
    October 3, 2006 at 12:00 am

    Wow, that’s awful. I’ve found that people tend to divide relatively easily by whether they have them or not; people who get migraines are sympathetic and wince (though they might offer what works for them, which tends to make me think of it like pregnancy – everyone wants to give advice), and people who don’t sort of look blank and uncomfortable.
    Thankfully, mine seem to be both less frequent and less intense than yours. Since I consider mine to be disabling when they happen (well, about half of the time), you have my profound sympathy. I can’t take triptan drugs either (I happen to be one of the small but significant portion of people for whom taking triptan drugs feels an awful lot like being punched in the throat. I’ve always thought that they make migraines go away by making you feel so badly that you forget you had one. I suppose it says something that I was willing to spend months injecting something that literally incapacitated me for the chance that it might make the thing in my head go away.), and my biggest source of relief happens to also be my biggest trigger (caffiene, of course), which makes lifestyle changes… unpredictable, at best.
    Having gone on that semi-tangent, I’m very interested to hear about how you’re dealing with treatment and the related disability issues. And, though of course I’m just a random lurker on your blog, I’m always willing to lend a sympathetic ear/inbox.
    Good luck with the Botox – I hope it works for you.

  4. Emily
    October 3, 2006 at 1:31 am

    “Just a headache” — yes, the worst thing anyone with a migraine can hear from someone who doesn’t suffer from migraines.
    I’ve had them since I was ~9yrs old (I’m 25 now), and in the last year and a half they’ve gotten worse. Used to be one every two months or so, then increased to one every two weeks or so… Currently? Last week I had 5 in 7 days. Week before? 3. Etc. And yes, insurance companies suck. And missing 4 days of work in one week because of migraines is not a piece of cake either. And explaining to people that it is NOT just a headache is infuriating.
    I took Imitrex for a long time until it just stopped working on me. Then I started on Maxalt. Have been taking Maxalt for 3 years now. They’re not supposed to be taken daily aparently, because when I do I get rebound headaches. Go figure. I took Topamax for a while to prevent them but the side effects were messing me up in horrendous ways, so I stopped that one.
    I ran out of Maxalts 3 weeks ago, so I went to a new doctor (I just moved, so I hadn’t picked a doctor yet). She gave me a prescription. I have a new health insurance now (new job, out of university, etc). When I went to a pharmacy to get the prescription filled, they informed me that my new health insurance requires prior aproval for this particular medication — a medication I’ve been taking for three frickin years. This was three weeks ago… I had to buy 5 pills out of pocket as a just-in-case (over $100 spent there), and stretch them out and only use them on the “very severe” ones, if such a thing exists. My insurance took three weeks to aprove the medication. Sunday night I started getting a migraine but had no pills left. Boyfriend drove me to pharmacy on monday morning. Turns out, this doctor that prescribed Maxalt to me (or her secretary, dont know) submitted an aproval form for *the wrong medication* and so I could not get the rest of my prescription, even though I was in horrible pain with my head splitting down the middle. Fortunately, the pharmacist was kind enough to just give me one of the pills and take note of it on my prescription, and so the horrible pain I’d been in for over 12 hours already went away in “just” 6 more hours.
    I haven’t seen a neurologist in 10 years. I made an appointment with one in a clinic specializing in migraines two months ago. The soonest appointment they had was for october 30. I call every day to see if there are cancellations. There haven’t been any yet…
    Migraines suck.
    Thanks for posting this. It’s comforting knowing that there are people out there who understand how severe and debilitating migraines are. I’m sorry you suffer them and have so many problems with the various treatments.
    (and botox? eeek! i hate needles! but if the neurologist i’ll see at the end of hte month says that botox [or any other needle-based medication] will ‘cure’ my migraines, i’ll take it in a heartbeat)

  5. Arwen
    October 3, 2006 at 2:09 am

    Since I recently did so, I apologize for the offense!

  6. Arwen
    October 3, 2006 at 2:17 am

    Oh, and I very much hope these botox treatments kick those migraines in the ass. I get them more rarely than my mom did, but I very much remember the “oh, just a headache” people from my childhood, and how my mom physically had to control the urge to throttle them. Only that would have hurt too much.

  7. Greg
    October 3, 2006 at 8:47 am

    I thought mine were pretty bad. Until I met somebody who was disabled by hers. Then mine were still pretty bad.
    The just-a-headache-ers learned their lines in the same school as the im-not-part-of-the-problem-ers.
    Take care of yourself.

  8. October 3, 2006 at 10:05 am

    I don’t get migraines, thankfully. I do get sinus headaches.
    I would say your list applies to anyone who gets any kind of headache.
    Best advice: If you don’t get headaches or migraines, don’t say anything to those that do. Peace and quiet is very much appreciated.

  9. bsci
    October 3, 2006 at 2:28 pm

    The strangest one is “So, tell me about this so-called stroke you say you had. (said by a doctor!)” Stroke is often paired with migraines (or migraine medication) and it’s fairly surprising that I doctor would have no clue about this.
    Sadly, our knowledge of migraines is still limited that even with expert help there is still a bit of luck is guessing what will or will not work on an individual so, that theme,
    Good luck with the newest treatment.

  10. October 3, 2006 at 4:14 pm

    For anyone (else!) curious about how botox and migraine are connected, this is a good brief introduction.
    Feel better, Z.

  11. PhysioProf
    October 4, 2006 at 2:09 pm

    Botulinum toxin is an enzyme that works by cleaving a protein essential for vesicular release of things like neurotransmitters, hormones, and other intercelliular signaling molecules. One of the theories of BoTox efficacy at ameliorating migraine is that it prevents release of substances that induce pain and inflammation from mast cells and pain-sensing nerve endings (which, in addition to their sensory function, also mediate effector functions by releasing cytokines and other signaling molecules).
    Zuska, I wish you success with the botulinum toxin treatment.

  12. Mara
    November 18, 2006 at 8:12 am

    I have a friend who says that her only response when people tell her about medical illness is “Wow, I’m sorry to hear that.” That way she avoids insult, recommendations, etc.
    So…I’m very sorry to hear about your migraines and stroke.
    Also, this reminds me of a post I once wrote about “Things you should never say to a person suffering from infertility.” Because I’m really glad your Aunt Edna stopped trying to have a baby and then she got pregnant, but that has nothing to do with me. Don’t tell people “just relax” or “you’ll get pregnant when God wills it” or…

  13. Miriam
    December 5, 2006 at 10:47 pm

    I am also a Disabled Engineer. One of my many disabilities is Migraines. I respect and fear the Migraines. In my particular case, they are not as severe as my other disabilities or my sister’s Migraines.
    If a co-worker was suffering from a Migraine I would only ask them if they want me to turn down/off the lights, not speak, and type as quietly as possible. I might ask them if there is anything they want me to do to assist them.
    I have lost many days of work to my Disabilities. In some cases, my co-workers have come close to killing me by PURPOSELY activating my more deadly Disabilities and then laughing about the damage it did to me later unappologically. How do you deal with assassination attempts at work? That is not something covered by Harassment classes.

  14. December 6, 2006 at 8:55 am

    I am so sorry to hear about your struggles. Women with disabilities are so invisible, so
    disrespected. Unless you have one of the “official” disabiliities that makes people
    behave because of the ADA. Migraine isn’t one of them and it sounds like your
    other disabilities aren’t either.

  15. loretta davis
    December 6, 2006 at 3:47 pm

    Reading Zuska’s blog has made me feel lucky that I do not have migraines every day!
    I do, however, suffer from them and I had botox injections to relieve my migraines on November 8th. Today is December 6th, and I have had 4 migraines in almost a month! Which is amazing for me. I usually get at least two a week.
    Zuska, good luck with your botox treatments; migraines are completely debilitating and any relief you may find is a blessing.
    After just a month, I feel happier, more positive and more relaxed. It is such a huge weight off of my shoulders- -less worrying about food, regular sleep, and hydration, all of which, in the past, triggered my migraines.
    And finally, one word of advice to migraine sufferers: try yoga. It helps you to relax, and in conjuction with Botox therapy, it will make your life happier!

  16. January 26, 2007 at 8:32 am

    I thought mine were pretty bad. Until I met somebody who was disabled by hers. Then mine were still pretty bad.
    The just-a-headache-ers learned their lines in the same school as the im-not-part-of-the-problem-ers.
    Take care of yourself.

  17. December 29, 2007 at 8:37 pm

    Reading Zuska’s blog has made me feel lucky that I do not have migraines every day!

  18. July 26, 2008 at 9:27 pm

    disrespected. Unless you have one of the “official” disabiliities that makes people
    behave because of the ADA. Migraine isn’t one of them and it sounds like your
    other disabilities aren’t either.

  19. August 5, 2008 at 10:24 am

    I thought mine were pretty bad. Until I met somebody who was disabled by hers. Then mine were still pretty bad.

  20. September 11, 2008 at 6:06 pm

    very thanks for you!! OyunX

  21. Katherine
    July 27, 2010 at 11:57 pm

    A lot of these comments are spam I think ^

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