Juniorprof’s #painresearchmatters Campaign

Simple Pleasures and Allodynia

If you have long hair, maybe sometimes you like to pull it back and put it in a ponytail tie or a scrunchie, especially when it’s hot outside.  Or if your vision is less than 20/20, maybe you like to wear eyeglasses so that you can see well when you are driving or walking or just toodling around your home.

When I get near the end of my three-month botox treatment cycle for my chronic migraines, those things start to feel like impossible luxuries for me.  The botox treatments – the only thing that seems to work to abate the frequency and severity of my migraines – begin to wear off at about 2.5 months, and then the migraines transform into more or less constant daily headache that is sometimes worse, sometimes better, but nearly always there.  My scalp hurts.  The back of my head hurts.  My eyebrows and the bony part of my skull just above and near them hurts so intensely it feels like I have been punched in the face there.  I have found that spring-loaded clips are less irritating for bundling up my hair but even these can be too much – sometimes I just can’t stand to have anything at all tugging on my hair.  (This is one of the reasons I’m thinking of getting it all cut off short, short, short.  Mr. Z will grieve, alas.)  I use my eyeglasses for distance only so when I’m in the house I often just leave them off altogether, so that they can’t irritate me by resting on my ears and bridge of my nose.  (I can’t wear contacts because of near year-round problems with allergies.)

These problems are an example of allodynia (that link will take you to a nice post on Juniorprof’s blog explaining allodynia and its mechanisms).

I once had a migraine so severe that I could not lay my head down on a pillow, because contact with the pillow hurt my face and scalp.  All I could do was sit in a chair and cry.  This went on for three days, until some friends discovered me and took me off to an emergency room for some pain relief, an option I had not known was available.

Treating Pain and Side Effects

I am deeply personally acquainted with pain, both chronic and acute, and the list of prescription and OTC meds I have taken over the years in an effort to prevent and control migraines, and treat their pain when they manifest their ugly selves in my life, is stunning even to me:  Acetaminophen, acupressure, acupuncture, ambien, amitriptyline, aspirin, chiropracty, coffee with lemon juice, coenzyme Q10, darvocet, demerol, depakote, dilaudid, excedrin, fentanyl, fiorinal,  inderal LA, lamictal, magnesium, massage, percocet, petadolex, reglan, seroquel, skelaxin, timolol, thorazine, tizanidine, topamax, toradal, tramadol, verapamil, vivactil, vicodin, vioxx, xanax, zonergran.  I am pretty sure this is only a partial list as I did not go through my file with the information on all the meds I’ve ever taken since my stroke odyssey began in 2003 for this post. (I can’t take the various triptan drugs because of the stroke.)

Nearly all the preventives caused me intolerable side effects – one memorable combination landed me in the hospital with a heart rate and BP so dangerously low I nearly died, and another had the distinctly unacceptable effect of making me incontinent.  And not in the “I need to pee more frequently” way.  The meds that effectively treat the pain all have the same lousy side effect, too.  The pain stops, but only by virtue of putting me to sleep for anywhere from 2 to 24 hours, and leaving me with a pain reliever hangover.  Use them too often, and you are in danger of having rebound headaches, and/or developing tolerance.  Before I started seeing my present neurologist, I could tolerate a narcotic dose that would tranquillize a horse.  He got me off the narcotics, which weren’t working so well anymore, and moved me over to Botox only and non-narcotic rescue meds. These meds are extremely sedating, which I hate, but they are less likely to cause rebound, and also less likely to have tolerance and addiction issues. I’m grateful to my neurologist for giving me pain management options that don’t include the opportunity to become a drug addict.

When my migraines were at their very worst, the only pain reliever I had available to me that worked well was fentanyl. Unfortunately, one night I developed hallucinations from it.  Some people may think hallucinations are a kinda trippy, fun sorta thing to experience but this was not.  It was terrifying and disorienting and I lost 36 hours of my life – and had to be hospitalized, again.

This is why I am grateful beyond what words can express for botox, because it is the ONLY thing that has ever provided any real sort of relief for me.  It does not cure the migraines, just sort of keeps them in check but that is still major progress.

It is also why I am grateful beyond what words can express for those who do pain research.  I have relatives who also suffer from migraine, and one of them has participated in a clinical trial to help better understand how botox treatment might help potentiate the action of triptan drugs.  I would dearly love to see botox treatments approved by the FDA for use in migraine treatment, because I really do think existing evidence shows it works – maybe not for everyone, but for enough people to make it worth having it as a choice when other options have failed.

Juniorprof has started a twitter campaign on why pain research matters, and has this excellent post which I urge you to read.

pain research matters to me because chronic pain is poorly treated, poorly understood and the people that suffer from chronic pain deserve a chance at getting that part of their life that pain sucks out of you back. I hope you’ll join me with tweets #painresearchmatters

Researchers like Juniorprof are among my heroes.  Read the post, if you twitter, join the twitter campaign.  Comment here and on Juniorprof’s blog. If you are currently painfree – count your blessings and enjoy the day!

Hat tip to Drugmonkey for making me aware of Juniorprof’s post and campaign.

This Just In: Scientists Discover True Nature Of Bullying!

Jun. 28, 2010 10:45 PM ET
SB COMMUNITY DEEMS PSEUDONYMOUS SOCKPUPPETERS ACCEPTABLE TARGETS FOR MOCKERY, DERISION
Douchey McDoucherson, ScienceBlogs Writers
ANYWHERE (SB)
Scientists have recently discovered that popular bloggers can taunt and gloat over the downfall of unpopular bloggers, and bask in the warm glow of widespread support – but only if proper precautions are taken while engaging in this dangerous enterprise. Most of the relevant research was published in a leading online linguistics journal.
Noted meangirl, petulant whiner, and internet gadfly Zuskaids was quick to critcize the major finding on a blog nobody reads, in the aggressive snark favored by her hellish mob: “These results cannot be generalized to the population at large. They did their study on a population comprised entirely of white males. I cannot believe the government continues to fund studies like this. Even the cress fanciers are bitching about this sort of thing these days.”
At a recent online conference convened to celebrate the discovery, Professor Inoya R. Butwutumi observed,

This is no more bullying than an isolated incident of the most popular kids at school gloating at the least popular kid when it turns out that all the friends he claimed to have are made up.
If they go on an on about it and hound him all over the place and never let him forget it, that could approach bullying, but only then.
Otherwise it is nothing more than a reaction to finding out that someone you don’t like who has been criticising you is a liar and a hypocrite. Just because Greg and Myers are popular doesn’t mean they can’t gloat a little.

Esteemed blogger and skepticod00dtastical Übermensch Haddid Kumingtoim observed that these sorts of dominance challenges from nomadic males naturally provoke a swift and deadly response in kind from the alphas, who must defend their territory and kill or oust those who violate the rules of the tribe. “No mercy,” declared Kumingtoim. “It seems harsh to us, but the herd must be culled of the weak and unfit.”
At press time, it was not yet clear whether the Domestic Sockpuppet Threat Level, currently listed as High or Orange, would soon be reduced to Elevated or Yellow. Dedicated DSTL analysts were tense, yet hopeful, that this terroristic threat to blogging’s credibility might yet be defeated.
———
ScienceBlogs writer Douchey McDoucherson contributed to this report.

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A Helpful Guide to “Knowing Your Place”

I was just traveling around the blogosphere and landed on this most helpful post; thanks to Bill Hooker, of Open Reading Frame, who launched my odyssey. Zuzu, who writes for Feministe, will explain much you need to know about keeping your place. This is invaluable information for any white women, or minority women or men, who are contemplating questioning the powers-that-be. Zuzu quotes Jill, who suggests one way to avoid being pegged as angry and hysterical:

…[preface your comments with] “I think y’all are SO awesome, and I totally love what you do and you’re all so talented and fantastic and I’m totally not trying to insult anyone here, but don’t you think it’s a little strange that there aren’t any women on this panel? But I mean you all are good representatives so really, don’t worry about it, it’s cool, I’m just saying…”

Of course, as Jill notes, this strategy will not work if you, like Jill and Zuska, are not generally good at prefacing your comments in this manner.

Perhaps, from now on, people could just pretend that I’m prefacing all my comments that way. You know, when I say something like “Colleges of engineering in the United States are bastions of entrenched sexism, racism, and homophobia, and all of us non-white-males are expected to be grateful for the miniscule amounts of change grudgingly ceded over the last 50 years of concerted struggle, and not make a big fuss about the huge remaining inequities,” you could imagine all that pretty language coming before it. If it makes you feel better.

Then, at nighttime when you go to sleep, imagine that angels come from heaven and sprinkle pixie dust over your bed to give you sweet dreams and protect you from anything unpleasant.

Stop Me If You’ve Heard This One

It’s the start of the fall semester. New committees are being formed, old committees are having new members appointed and all of them are convening for their first meetings of the year. I happened to get hold of the minutes of the first meeting of the Committee on the Status of Women in Science and Engineering (CSWSE) at IncrediblyLowPercentageOfWomenInEngineering Polytechnic University (ILPOWIE Tech). The committee members were appointed by the provost, and they included the Engineering Dean, the Women in Engineering (WIE) Program Director, and a Women’s Studies (WMST) Professor. Read and see if any of it seems vaguely, horribly familiar. WARNING: WIE directors, in particular, may suffer flashbacks.

Beloit College’s Class of 2010 Mindset List

Each year, Beloit College publishes a list that gives you a sense of what the world looks like to matriculating college students. Read the latest list and weep at just how out of touch you are with this year’s entering college students.

Welcome to Thus Spake Zuska

If you are a long-time reader, thanks for following me here.

New folks can look up all the prior good stuff here. Information available under the “About” tab may help orient you in the Zuskasphere.

Important

You should note straight off that this is not a blog about hearts and flowers and kittens and happy thoughts (the beautiful picture of my Globemaster Allium to the left notwithstanding). I often write about things that are so unbelievably atrocious and disgusting, you’ll feel like horking up your breakfast. Thus, I do not recommend reading Thus Spake Zuska while eating, except for those with the strongest of stomachs. I cannot be held responsible for damage to keyboards, laptops, or any other electronic device should you choose to ignore this warning.

Other Things to Keep In Mind

Periodically there will be long gaps between posts, sometimes lasting a week or more. This is because I suffer from chronic disabling migraines. I don’t know if I am the first disabled scientist/engineer blogging here at Sb; if not, hello to my comrades, whoever you are! If I am the first, I look forward to others joining me someday. All you currently able-bodied folks should remember: able-bodiedness is only a temporary stage in life. Sooner or later, if we don’t die first, we all end up disabled in some manner.

In my next posts, I’ll be picking up a few loose threads from the old blog site, including:

1. A response I received from Rollins President Lewis Duncan in regard to my post on his apparent endorsement of pragmatism (meaning $$$) over concern for sex discrimination;
2. My response to his response;
3. And a long-overdue response to a young woman who commented on one of my posts on the ludicrous Screen Goddess IT calendar.

Thus Spake Zuska is not for the faint of heart. It is, however, for anyone who believes that you shouldn’t have to possess white skin and a penis to obtain a passport to Science-and-Engineering Land.