April Pain Blog Carnival Posted!

The April Pain Blog Carnival is now posted at How to Cope with Pain. The entry I provided is one several of you have probably read before, but I thought it was the most appropriate April blog post for the contest.

Take some time to peruse this well-organized, helpful website! Maybe you can participate next month! (Information is posted on the blog carnival page if you are interested in writing next month.)

Thanks!

Migraine & Headache Poetry Contest WINNERS announced!

You may have read about Health Central's Migraine & Headache Poetry Contest here on my blog or somewhere else on the net.

Yesterday, the winners were announced! I haven't gotten a chance to read the entries yet (all entries remain on the page; winning entries & honorable mentions are highlighted and listed for you) but am excited to do so!

Click here or on the title of my post to see the poems.

Did you know that taking time out to pursue creative activities decreases your stress and can therefore lead to a decrease in Migraine frequency?

unsolicited advice

I've found the more I learn about Migraine disease--what it is and what it is not--the stronger my tendency to deliver unsolicited advice to strangers and friends alike.

Just tonight, a friend mentioned "headaches from acute sinusitis." My first instinct was to respond with, "Did you think they were sinus headaches? Did your doctor say they were? Sinus headache is actually not a valid diagnosis. You could be having Migraines."

My friend (and former professor) has been getting terrible, debilitating headaches more and more in the last couple of years. One of her nicknames is "The Human Barometer." All we informed migraineurs know this is a huge indication she's probably suffering from Migraines: debilitating pain that makes her sensitive to ordinarily tolerable stimuli, getting awful pain each time the barometric pressure shifts? A self-diagnosis of hypoglycemia because the pain rears its ugly head each time she misses a meal? She sure sounds like a candidate for Migraine disease diagnosis.

I've eagerly pushed for her to see her doctor to discuss a possible Migraine diagnosis, but, last I heard, she wasn't buying my argument. I felt I was physically restraining myself from pummeling her with a long list of signs and indications that one might be getting Migraine attacks. I tried to keep it easy, but I wanted to cry, "I love you! I hate that you're hurting! I think I know the first step to getting you better: figuring out for sure what you have!"

My sister has been getting Migraine-like headaches recently. Her over the counter painkillers aren't fitting the bill, and when she describes the headaches they sure do sound like Migraine. With a family brimming with Migraine sufferers plus a history of childhood headache, she sure is built for adult Migraine disease. But, as yet, she's not gotten a diagnosis. I want to force her to go to the doctor to figure this out; if it is Migraine, there's probably an acute treatment she can give herself when in pain. She doesn't have to suffer!

I always stop myself. I hate sounding preachy. This is one of the reasons I have proclaimed myself "The Migraine Girl"--I feel sometimes I am speaking from the standpoint of someone whose whole mission is to cut down on Migraine frequency and severity for myself and others. I want to spread the word, to share the gospel. But, in truth, a lot of people don't want to hear it. And I should respect that.

I wonder if anyone reading this has had trouble with this: seeing the signs in other folks but not wanting to go off on your Migraine disease diatribe.

Anywho. That's all.

fluorescent lights as a Migraine trigger--a list of resources

1. The Irlen petition, which currently has over 2,000 signatures. We need to get it more widespread! As I mentioned before, I have tried to contact Helen Irlen to see if she'd be willing to have me, someone, anyone! host the petition on a bigger scale so more people could see it. She didn't get back to me. The petition includes three other resources, which I've listed right here:

http://www.theness.com/neurologicablog/index.php?p=157
http://news.bbc.co.uk/2/hi/health/7170246.stm
http://www.news.com.au/adelaidenow/story/0,22606,23000203-5006301,00.html

2. ABC News article entitled "Major Headache? 7 Common Migraine Triggers." Lighting, including fluorescents, is the first item on the list.

3. A Washington ABC affiliate's brief article & newscast called "Dealing With 'Lightbulb Migraines'."

4. MyMigraineConnection's story, "Migraines at Work? Check the Lighting."

5. "No Joke, Bulb Change is a Challenge for U.S." by Claudia Deutsch at The New York Times.

6. U.K. paper The Daily Mail story called "Energy-Saving Bulbs 'Can Cause Migraines,' Warn Experts." Definitely look at the comments that follow the story!


7. Energy Star CANADA's page describing Canada's legislation to improve bulb efficiency--interestingly, they are doing what one of my fellow bloggers recommended, which is requiring a minimum level of efficiency per bulb and not requiring that citizens use CFLs only. In the FAQs, they dispute the idea that the new, rapid-cycling CFLs will affect Migraineurs. They mention that new CFLs eliminate "the perceptible flicker" associated with headaches. The problem is just that: to many Migraineurs, the flicker isn't readily apparent to the eye but is far from "imperceptible" to the brain. Chalk it up to our overall heightened sensitivity, but CFLs can and do trigger Migraine attacks.

8. Check out the following excerpt from what I take is a Sierra Club blog written by a "Mr. Green." Here you'll see Helen Irlen (yes, of Irlen fame!) remarking on the bulbs' side effects as well as his response. I've included that excerpt here, but the whole page is interesting to see.

MAJOR HEADACHES

Hey Mr. Green, While we understand the nation's quest to better the environment, and we agree that much of the outcry regarding mercury in compact fluorescent lightbulbs is overzealous, we do want to point out another issue with CFLs that many people are not aware of. In the United States alone, 49 million people suffer physical effects from energy-efficient fluorescent bulbs. For individuals suffering from Irlen syndrome, a perceptual processing disorder defined largely by sensitivity to light, fluorescent lights trigger headaches, migraines, stomachaches, fatigue, eyestrain, anxiety, and irritability. Fluorescent lights can also negatively impact the immune system, literally making these individuals sick. Energy conservation is an important goal we should strive to achieve, but individuals who are sensitive to fluorescent lights need the option of incandescent lightbulbs in their homes and work environments. So we ask that you remain open to incandescent lightbulbs as an alternative for individuals suffering from Irlen syndrome and the physical difficulties triggered by fluorescent lights. --Helen L. Irlen, executive director, Irlen Institute International Headquarters, irlen.com

Hey Helen,
This is news to me, but a number of readers share your concern. Any proposed legislation mandating more-efficient lightbulbs should take the possible health effects into account. The LED lights mentioned by the EPA's Wendy Reed may provide some relief in the future as well.
Environmentally,
Mr. Green

9. More from Ms. Irlen regarding oversensitivity, lighting, etc., especially as it relates to autism.

10. This Irlen.com page has a whole list of resources, some of which deal with fluorescents' effect on sensitive individuals. Here's another that's migraine- and headache-specific. Finally, some brain research. I didn't look through these articles, but there may be some good information in 'em. The Irlen page has other useful tidbits; look through and see what else you find!

a pain in the neck

My neck has been killing me for the last two days--for the several days before that, it was just really stiff and moderately sore. OOWWWWW! My jaw's been driving me crazy again, too, and my back feels strained. Wah, wah, wah.

I'm wondering if the massage I had two weeks ago screwed it up somehow, though usually massage helps. Has anyone had the experience of having a massage hurt more than it helps? I can't get comfortable at night because, no matter where I put my head on the pillow, my neck aches and throbs.

Boo hoo.

yippee for prescription assistance programs!!!, or, FREE DRUGS

I've been enrolled with success in the GlaxoSmithKline's Bridges to Access Program. There's information on it here: http://www.bridgestoaccess.com/

I can get my Imitrex for free from them (as I understand it) after I send in the bulk of my paperwork, which my advocate (an assistant at my neurologist's office) helped me fill out. For now, I'm enrolled for two months and can go into my favorite retail pharmacy (my local Kroger, where I love the people) and get a 60-day supply. The initial 60-day supply is accompanied by a $10 copay per fill, but that's about 1/10 as much as the Imitrex would cost me normally!

Already I'm in the Together Rx Access program. That's the program with the least amount of hassle, but it's just a discount program that offers cuts but not ones as big as 90% off the regular price. It'd be of more use to me if I didn't belong to Bridges to Access already, as the only drug I'm currently taking that is on the Together Rx Access list is Imitrex--and I can get that for [almost] free!

Finally, I applied for my free trial of Maxalt. All it takes is a printer and a couple of stamps--one so you can mail the form to your doctor to request a prescription for 3 Maxalt pills, and one so you can include a self-addressed, stamped envelope for your doctor to send you the prescription and forms back!

In the works is a plan for me to get free (or cheap) Maxalt, too. I forget which program covers that, but my doctor has sent in the paperwork to the proper recipient by now, I'm sure. I can't say enough about The Partnership for Prescription Assistance Program (PPARx). I'm so much more calm when it comes time to take a triptan, not nearly as stressed as I usually am for fear of wasting my money.

Go sign up! I make very little money, but you can make a fair amount (not a HUGE amount) and still qualify for these programs.

scalp/hair pain

I sometimes feel extra sensitive on my scalp when I'm having a Migraine; without a doubt, I am a girl who can't stand to have a regular ponytail in for more than a few minutes because of the aches that come as a result. During and right after a Migraine, I've been known to feel scalp pain.

But this is different. All day the crown of my head has ached as if I had a ponytail pulling on it--but I hadn't put my hair up at all when the pain started. The pain is all around the roots of my hair and is exacerbated by my pressing on my ultra-sensitive scalp. It's truly a strange sensation, especially since, as I've said, I didn't have a ponytail in, nor am I having a Migraine.

A cursory Google search gave me some leads when I looked up "scalp pain" and "hair pain," but I'm doubting I have the ailments (other than Migraine) mentioned as possible reasons for scalp pain.

This post is mainly for myself in the case this continues--it'd be nice to be able to tell my neurologist when it started and how it felt.

Does anyone here feel this same sensation sometimes?

missing out on all the fun

My friend just called me from the Okkervil River show. One of my favorite songs of theirs, "Our Life is a Not Movie or Maybe" (which plays when you visit their site) blared through my cell phone speaker, peppered with high-pitched screams of delight from the audience and some whistles.

You see, I was supposed to be at that show. L. bought me a ticket a month or so ago as a birthday gift, and I was thrilled by the fact that I was really into BOTH bands--the opener (Okkervil River) and the headlining act (The New Pornographers). This evening, I did some yoga stretches for my neck and then took a warm shower, telling myself this was a recipe for a good evening. I'd taken a nap earlier in the day to have extra reserves of energy at my command so I could stay out late and still wake up early for work tomorrow. I did everything right.

After my shower, I wanted to creep into oversized jeans and a hoodie for comfort; instead, I put on an equally comfortable but cute dress in an effort to convince myself I was feeling better. See? Look at me! I have mascara and a dress on, plus some earplugs in my pocket to boot. Surely I'm going to have a great night out!

Went to dinner. Tried to park downtown in a [free after 6 PM] metered spot but had no luck. When I went to my ol' trusty backup free lots, I was alarmed to see that BOTH of them now charge $5 to park. Frustrated and inordinately enraged (was that me or the steroids that wanted to crash the cars in the parking lot?), I drove back through the city streets 'til I found a spot. I wanted so badly to honk obnoxiously over and over to assert my premier position as another guy tried to deftly slide into the spot I'd been waiting for for a good sixty seconds, but I refrained and kept it at a light tap. Oh, I was ANGRY. Far angrier than I should've been, I realize. I tend to get fed up easily when I'm not feeling well, when I'm out of control--I'd bet the "extreme irritability" that comes along with the steroids for some people didn't help. (Last night I nearly had a temper tantrum in the middle of the night because the damned sheet kept getting tangled--I wanted to rip the stupid thing off the bed and burn it. 'Roidy, much?)

So there I was. I parked, took a deep breath, and walked to meet my friend C.--I was now 15 minutes late. We hopped restaurants a few times 'til we found one with no wait, and, after a strange coughing attack (my throat has felt weird lately), I sat down and eagerly awaited my sub sandwich.

It was at that point it hit me. I was exhausted again. My 45-minute outing had zapped my energy. I'm sick of sleeping, sick of lying down, sick of being inside my house. But going to a loud rock show was going to be a silly move, most likely. In any case, there's no way for me to see which one would be the better option in reality, to go to the show or to skip it--I have to choose one path with every decision I make and there's never any knowing what could have been. Maybe the show would've had me relaxed, jumping up and down, and feeling better. And maybe the crowded theater, the loud music, and the high-pitched cheering would have been a recipe for disaster.

L. came to where I was sitting with C. and hung out for a couple minutes. She has always been so loyal and so good to me regarding my Migraines. "I don't want you to go if it's going to make you feel bad," she said, and having her support allowed me to officially bail out, guilt free. I've known her for years now, and instead of getting more frustrated at my self-set, self-preserving limitations I make as time goes on, she's more understanding and less apt to pressure me to do something my body can't handle.

As I walked past the theater on the way to my car, I heard another favorite song ("A Hand to Take Hold of the Scene") playing from the stage. I paused. I peered in at the stage and saw the small figures bouncing to the sound of their music. The trumpets joined in.

I kept walking, the sounds of the music echoing off the small city block. As soon as I climbed into my car, there was someone else waiting to take my spot.

Migraine & Headache Poetry Contest

For all you wordsmiths (or even those of you who haven't tried your hand at it before), check out this contest! Entries are due VERY soon--April 21, this Monday.

Give it a shot--you've got nothing to lose but a little bit of stress. (Writing helps a lot, you know.)

what gives?

I'm nearing my second day of the steroids. Granted, I took my first set of pills last evening around 8:30, so really the first and second days' worth of 'roids have only been in my system for a little over 24 hours. (Gross--did I really just write "'roids"?) But still--what gives!?

There's so much pressure in my sinuses, neck, and head. My neurologist (or rather, the assistant who always calls on his behalf) instructed me to not take any of my regular acute or rescue meds, so I feel screwed right now. It's been years since I've had to suffer through a Migraine attack this long.

I must have become more wimpy over the years, cause I just can't take it anymore. In high school and college (especially college), I pretty much went triptan-free. (I was diagnosed and given Imitrex when I was 21, about to start my senior year at college.) Before the diagnosis, I would have to muddle through the pain and side effects for up to days at a time. Now I can't let one go one for long before reaching for my emergency kit. Perhaps having an official name for my disease made it more real for me--I realized I wasn't just nursing a recurring, frustrating headache--instead, I was treating symptoms of a serious, life-altering disease.

This afternoon my beau and his friend dropped by for a bit, and I had a good hour or so of feeling okay--no major pains, but still a general sense of uneasiness and weakness. I made sandwiches and cut up fruit for dinner, but that seemed to be the last straw--as soon as I took my last bite, I was ready to lie down again despite my utter boredom with my bedroom at this point. A few hours later, I reemerged from my room for a warm bath. Using this pain-relieving ointment I got recently on my neck and upper back proved to feel amazing when combined with the warm bath water--I felt as if my neck was both chilled and warm at the same time as the hot water splashed on the ointment. It felt goooood. But the respite the bath allowed me was brief, and I got up and tried to do a couple of things before feeling bad again. Had a nice conversation on the phone with one of my best friends, but the last ten minutes or so became a struggle as I tried to sound chipper despite my head's throbbing.

I'm not sleepy. I've been sleeping so much. Sitting up hurts; lying down hurts. I can't take medication other than the steroids I'm on for three more days or the daily meds I pop. No Imitrex. No Maxalt. No mind-numbing Lortab.

When will this kick in? Am I continuing to get new Migraine attacks because of stress and the omnipresent Georgia pollen, or is this the same Migraine continuing its awful journey?

I guess I'll try to convince myself I'm tired again. The last few nights I've fallen asleep listening to guided visualization tapes and/or NPR podcasts (This American Life, Radio Lab, and Selected Shorts are my favorites).

Goodnight.