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.

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9 responses so far

  • juniorprof says:

    Thanks very much for spreading the word Zuska! Sorry to hear about the migraine struggles but glad to hear that botox has helped you. It seems to help many and we'll see what eventually happens with the FDA with that one. Also on the horizon are CGRP receptor antagonists, the first one likely coming from Merck (Telcagepant). There is a lot of excitement about that drug for abortive migraine treatment although preventative trials were recently abandoned due to a liver effect with long-term dosing. It seems to help triptan non-responders so it could meet a great clinical need.

  • The History Enthusiast says:

    I'm happy to hear that Botox works for you! I haven't tried that yet. Usually my meds and chiropractor keep them mostly in check. I've had hallucinations before, and you're right, they are truly awful.

    Incidentally, one of my pet peeves is when someone who just has a bad headache (no other symptoms like auras, etc.) complains about having a migraine. Their head may very well hurt like a bitch--and I sympathize--but it's nothing like the pain of a migraine. I get so nauseated I have to lay down in a completely dark room with an ice pack on my head for at least 12-24 hours. I develop tunnel vision and can barely see. Mine aren't as bad as yours, but the part I really hate is when my teeth start hurting from the inside out. I always try to educate people about what a *true* migraine is, and hopefully as researchers continue to educate the public more people will understand exactly how debilitating these really are.

  • Karen says:

    I've been blessed in that I only suffer from the occasional tension or sinus headache, and they can be quite distracting! My heart goes out to Zuska and all the other migraine sufferers who read this blog. I'm really glad that pain med alternatives like Botox are being researched. I've worked with people who suffer from migraines and it's clear that you all suffer exceptional pain and distress. I hope there are new things on the market to try soon.

  • [...] Zuska now has a detailed post up on her migraines, allodynia, and the litany of drugs she has gone through to find some relief [...]

  • Jim Thomerson says:

    My mother used to have frequent migraines. They stopped when I went off to the University. I try to not think about that too much.

  • thebewilderness says:

    One of my childhood friends had to keep her hair cut quite short to reduce the frequency and intensity of her headaches. I hope that cutting yours will give you some relief.

  • Level Best says:

    Believe me, I am counting my blessings after reading this! I'm glad that botox treatment is available to you. One of my former co-workers developed a paralyzing neurological disease in the 80's, and eventually local neurologists sent her from Tennessee to Houston, TX, to have botox injected every few months for some relief. At that time that was the closest place that offered experimental botox treatment!

  • [...] WOW!!, this has easily been the busiest day ever on juniorprof. Many, many, thanks to Abelpharmboy, Zuska, Melissa McEwan and Almost Diamonds for linking here and sharing your support for the campaign and [...]

  • Stella says:

    I have a wonderful optician. I told him I needed my glasses to be weightless so I would have some chance of wearing them during a migraine. He found flexible, titanium frames that are usually fine once I have some level of control over the migraine. They do have to fit properly and be readjusted as needed.

    My long hair went with menopause. I do miss it, but I don't miss the head and neck pain.

    I find migraines to resemble seizures more than they resemble sinus or other intense headaches.

    Your list of meds you remember trying is rather frightening. I am very glad you are getting some control with the Botox, and I hope that will continue.

    Stella

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