why you shouldn't give up hope

One of the readers of my blog, T., started emailing me a year ago or so (has it been longer than that, T.?). I'm happy to report that after 19 months of daily headache/migraine, she has gone eight days pain-free. As far as I know, this is the longest period of headache-free days she's had in nearly two years, folks. I'm so very happy for her--what a wonderful, refreshing feeling that must be, to wake up and NOT feel sick after getting used to the pain as a way of life.

Way to go, T.! Here's to days, months, YEARS of good health!

an out of the blue attack

Usually I can feel the discomfort in my head building as the minutes pass. I have time to decide whether or not to take anything for the attack.

Tonight I was having a perfectly nice evening outdoors, working my job as a storyteller (glorified name for a book reader and literacy advocate) at an area homeless shelter. I got up, put my book bag and blanket in the car, and signed out. When I got in my car to leave, BOOM! My head was not quite right.

Could it be that I was so engrossed in the tasks at hand I didn't feel the pain until I was back in relaxed mode, ready to go home? That happens sometimes, but I don't think that was the case tonight. The last few minutes outside were very relaxed and remarkably non-worky. I just sat talking with one of the moms at the residence and didn't feel I still had to be "on."

What is happening with me these last several weeks? I'm so frustrated!

Here's a sneaking suspicion I have: something's up with my back. My sciatica? I still don't know what that is, exactly, but I know it involves the lower back and can mean a pinched nerve or tendon or muscle that triggers pain in other parts of the body. This is what I think is happening--that'd certainly explain the back pain, neck pain, and leg pain I've been having the last few days. I am waiting on a call back from my massage therapist.

Despite not feeling my best tonight, I decided to be social. Taking a cue from people I know (or whose blogs I read) with New Daily Persistent Headache and/or chronic daily headache, I am trying to still do things I enjoy despite the pain, trying not to shut out the outside world and the things I love in it in favor of lying in bed feeling bad. It worked okay tonight, and I won't be pushing myself to socialize all the times I am not up to par. Tonight I went to my friend C.'s house to eat some hamburgers, chit-chat about my eventual bookstore, and watch the obnoxiously addictive show Top Chef. I left at eleven and decided then to take Maxalt--food and relaxation didn't help curb the attack, so I drugged myself up.

Now I'm in the waiting period, hoping it works, hoping I won't have another headache soon.

Goodnight!

June Migraine & Headache Blog Carnival (I'm moderating) - write write write!

Diana Lee at Somebody Heal Me has granted me the honor of being the June host for her remarkably helpful and informative Migraine & Headache Blog Carnival.

June's theme is "How to Have a Fun, Healthy Vacation in Spite of your Migraines." All entries must get to me by 11:59 PM on Friday, June 6. The carnival will be published Monday, June 9.*

To enter, send me an email with your name, your blog address, and a link to the relevant entry you're submitting. My email address is themigrainegirl@gmail.com

You can also submit to the monthly carnival using this newfangled form. Click on the icon in the upper right-hand corner to enter your information.

Thanks so much! I look forward to reading many inspiring entries!

*Off-topic entries will also be considered, but please do try to write on the subject--this will help many people during summer, when lots of folks travel.

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?

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.)

fifth time's a charm...right?

I've had the worst streak I've had in awhile. Sure, there've been days I've had some mild pain day after having been icky for a while prior. But today marks the fourth day in a row of having a moderate Migraine headache--and since I'm not supposed to take triptans more than two days a week, I feel stuck between a rock and a hard place. (Sorry for the cliche--can you blame a half-wit like migraineous me for not coming up with original witticisms?)

You all saw how I bitched (justifiably, I know--thanks for the reassurance!) on Wednesday about that sudden Migraine headache. I had high hopes that I'd filled my quota for the week then, but no such luck.

Flying into Virginia Thursday was uneventful, but as soon as I was in the car headed from the airport to my our hotel, the sure-fire symptoms began. Took half of an Imitrex (despite the label's order not to split them, I figured I'd cut the 100mg pill and take around 50 mg, thinking that'd be enough to kill the headache) and lay down. The pain was mostly gone in an hour or so. The next day, Friday, I woke up with a headache again but pretended it wasn't there. After all, it was a spa day for my cousin, my aunt, my mom and me! Surely a massage and a facial would heal me right up. Wrong. The pain got worse at lunch, post-spa, and I popped the other half of that Imitrex.

I took a nap at my aunt's and woke up feeling headache-free but extremely groggy and antisocial--not good when there was a casual dinner party over here and I was trying to be much more animated than I felt. (I failed my own test.)

Today I felt bad again but couldn't break the rule even further--after all, Friday marked the third day in a row having a triptan, and I couldn't face the possibility of a rebound headache by taking another triptan. So...I took a nap, my third one in three days. Woke up feeling rested, but the pain returned and is sitting here now, running up and down the left side of my neck, behind my cheekbone, and behind my left eye. An old, obnoxious acquaintance setting up house once again.

I'm traveling. The weather is fluctuating greatly here in VA, and my period ended today. The pollen and allergens in the air are icing on the cake.

I can't wait to feel good again. I realize I ain't got nothin' on the chronic daily headache or Daily Persistent Headache folks, but man! I've had quite enough!

a pain a day

I have had a headache every day for the last week or so. This achey, sinusy feeling throbbing on the left side of my head feels like a grade 2 Migraine headache. It's only progressed to a full-fledged Migraine twice in 8 days, and I've only taken a triptan twice. I am wary of taking pain medication for it because I don't want my chronic daily headache to rear its ugly head again in the same way it used to. This is how it used to feel, minus the sinusy aspects.

Had I not learned that the vast majority "sinus headaches" are really undiagnosed Migraine headaches, I'd think I were suffering from a sinus headache in part. I also feel the way I do the night before I get my period, that particular brand of Migraine I endure right before the onset.

It has been around 100 degrees out every day for the last several days here, and maybe that has something to do with this. I don't know. I just feel tired and helpless since I feel I can't take my medication due to fear of rebound headache.

owwwww....

I've been quite under the weather lately, trying REALLY (I mean really!) hard to resist taking my Relpax + Naproxen combo when headachey since the pain has been so consistent. I can't tell if I'm suffering from the much-researched, much-talked-about medication overuse headache (MOH), spring weather trigger overload, or just a particularly bad Migraine bout. I haven't had daily headache battles in quite awhile, and I feel pretty upset about their sudden return in the last few weeks. It's gotten me pretty down.

If I don't take Relpax right away, then I sit around feeling awful and am horrible company for others and, most notably, myself.

If I do take it, I worry that the next day my pain will be worse and I won't be *allowed* to take any more since I have to limit myself to two triptans a week.

Ay. Woe is me.
Sad hours seem long.

The end.

ten days and counting

I'm used to having a minor headache every morning and evening, but a full-blown Migraine headache each and every day for the last ten days? Give me a break! I called my neurologist a few days ago and asked for even more Relpax--my prescription ran out a bit ago but I keep having to order more to fill in the gap of time until I can go see him for my appointment in four weeks. Usually eighteen pills (three boxes at ungodly prices per box) would last me awhile. The first of the eighteen I asked for a few weeks ago. The most recent batch of six I bought from the pharmacy just three days ago--there are only two left, and I have 32 days until my appointment.

I'm going to have to call and beg for more.

I'm going to have to get the seasons to stop changing so that the weather doesn't aggravate my head.

I'm going to have to get the rain to stop coming and going as it does so that the barometric pressure doesn't wreak havoc on my brain.

I'm going to have to find something to do before I become a drugged-up hermit forever.

a walk to ... forget.

In an effort to control the five trillion things that trigger my Migraine, I've made an attempt to wake up at a consistent hour for the last few weeks. The mornings have been refreshingly, surprisingly lovely. It's spring now, though it feels more like summer, and the morning hours are the perfect time to stroll downtown for coffee or open all the windows and listen to music before the heat sets in.

There was a short period of my life (last year or so) when I awoke with terrible head pain almost every day. Of course there'd be those few moments when I'd open my eyes, stretch, and feel that hope that accompanies a bright morning: "Is it true? Could I actually feel well today?" In a flash of eagerness, I'd swing my legs out of bed and feel a rush of blood and pain in my head before my feet even had time to hit the floor. Morning Migraine. At this stage in my ever-shifting life, the mornings are good for me and the Migraine sets in during the afternoon or evening, mimicking the pattern that has dominated my illness since I started getting severe headaches as an eighth grader 12 or so years ago.

The question is, what should do with these rare hours of sickness-free time? If I start on work (which is unlikely, since I'm the most infamous procrastinator of all), I end up with a stress-triggered headache very quickly. I want to have times where I can enjoy walks, cups of coffee, time with friends, and hours with books before the pain sets in. This is how I chose to indulge myself this morning. Woke up around 8, eventually walked to a bakery to meet a friend for breakfast, b.s.ed with some buddies who happened to stroll by, nearly finished the novel I'm reading this week, made some phone calls, and enjoyed the morning.

"Time to start the work for the day," I thought to myself as I pressed play on my little iPod and started to walk the mile back to my house. As I walked up the slight incline of my street, I could feel pressure behind my left eye and felt a dull pain rear up in my sinuses. "Ignoreitignoreitignoreit' was a chant going off in my head, so subtle and well-rehearsed that I barely would have noticed it if the pain didn't suddenly increase as I got closer to home, closer to work and closer to the hour when the daily headache usually sets in.

But, as I explained in previous entries, I don't feel free to take Relpax and Naproxen the moment a headache kicks in, as indicated by the label. When you have CDH (or even Migraines that are more frequent than a couple times a month), you're warned against abusing the drug for fear of dependence, rebound headache, and the eventual tolerance you'll build against the drug's effectiveness. The pain and discomfort, as usual, wax and wane depending on my activity level and approximately 4,231 other factors. Right now I am sitting with my back against the headboard, typing as I sit/lie in bed and hear birds chirp excitedly outside. The left side of my neck has a rope of pain that throbs at its own unpredictable schedule.

For now, I feel okay...

a kindred spirit...

http://www.thedailyheadache.com/

The infamous REBOUND HEADACHE

Are you familiar with this phenomenon? In my life, it has taken on a life of its own. What follows is an all-too-real example of it.

On Friday night, I wasn't feeling up to par--but what else is new? And is it fair to say I wasn't feeling up to par when my par is usually not too high? I wasn't feeling up to a healthy person's par, I should say. I thought I would be okay to go out with friends. Unfortunately, the headache got worse rather rapidly and I could feel my brain throbbing as I walked with a friend to my car and was trying to figure out which party to attend next. (No, my social calendar is usually not packed--but I did have two get-togethers I'd promised to drop by.) We decided to drop by my house before the parties, and as soon as I sat down in my faithful recliner, I realized that the Migraine wasn't going anywhere. In fact, it was making itself more known by the second. After being home for 20 minutes, I asked my friend if she minded if we skipped the parties. I dropped her off at home and then went to bed, avoiding the Relpax because I wanted to see if I could sleep it off.

Sleeping off a Migraine is something that used to work for me, but it hasn't done too well by me for the last several years. Perhaps it was just the quiet passage of time that temporarily cured the pain. In any case, now I am caught in the all-too-common dichotomous nature of Migraine treatments.

1. We are told to take our Relpax (or Imitrex, or whatever drug you need to kick a Migraine out) at the first sign of Migraine. I can't do this because I have CDH and have the first sign of a Migraine almost every hour of the day. I usually must wait 'til it gets progressively worse.
The more you let your body get into the pattern of getting Migraines, the more easily the pain comes back the next time, having mastered the neural passageways and routes necessary to dilate and constrict the arteries and veins.
2. If one takes a reactive Migraine drug like Relpax or Imitrex, he or she can expect to get another Migraine in 12-48 hours. This is what's dubbed "the rebound headache." Our poor patient will either suffer through this second Migraine or take another Relpax to fight it off. If a third rebound headache occurs, she's not to take another Relpax. One cannot become dependent upon this drug, so one ends up in agony much of the time if she's already suffered through two Migraine episodes in a row.

Back to this weekend. I awoke on Saturday morning with the headache being even worse than it was the night before. After stumbling about the house for an hour or so, I sucked it up and took a Relpax along with 500mg of Naproxen (my doctor's prescription, not my own addition). Within 1 1/2 hours, I felt great. I've never felt so wonderful as I do when the drugs have kicked in & there's no trace of a headache for a few hours. Sigh. All-powerful me! I went out with friends, visited a neighbor, went to a play, and stayed out until 3 or 4 AM.

Sunday morning? Yep. Migraine. Not a hangover headache as I had initially thought (& half-hoped). I took Relpax (plus the Naproxen, of course) and eventually felt good.

But I can't ever feel entirely good, knowing I'm utterly dependent on ridiculously, unfairly expensive medication. My pain this weekend cost a lot in terms of psychological and physical strain, but it also cost me lots in U.S. dollars: about $55 for prescriptions my plan no longer covers.

When I think about it in those terms, a ghost of pain shoots through my head. As usual, it's time to avoid this topic and pretend I'm "normal" in the hopes of having an okay day.

PHOTOPHOBIA

The title of this entry may be unfamiliar to you, but you can probably guess the definition of "photophobia." Basic vocabulary rules are forming in your head, and you've come up with a few options. Scared of...scared of...photographs? Photographers? Photons? Light?

YOU'RE SCARED OF LIGHT?

No. Not quite that. But I am abnormally sensitive to it, and this sensitivity has only worsened over the years. Since I was a wee little thing, my classrooms have been lit with overhead fluorescent lighting, which is proven to be bad lighting for anyone (in terms of energy level and productivity). For us photophobic Migraneurs, the indiscernible flickering of fluorescent lights can trigger an episode. Unfortunately, our eyes and brains do discern the rapidly vibrating blue light when the vast majority of people are fine with it. Thus far, there are no solutions for photophobia, as people think you should treat the cause (in this case, Migraine, which I'm doing my damnedest to treat) and avoid the triggers if possible. For me, this is not possible. It's come down to my having to ask professors if we can dim all the lights but one row. After I flick the light switches on and off and the beginning of each class session (to my unwittingly ignorant classmates), I sit in the darkest area of the room and don my hat and sunglasses.

Unfortunately, I have to look up from underneath the brim of my worn baseball cap in order to see others while they speak; I have to adjust my reddish-brown-hued (to counteract the blue of the lights) glasses in strange formations so that reflected light from our white working tables doesn't flash into my eyes. In looking up from under my hat bill, the ever-sore left side of my neck starts to get tired and sore. Soreness of the neck? Yep, another one of my major Migraine triggers. The entire time I'm trying to manipulate my eye shields, I feel like a total drama queen. Logically, I know that people don't mind my needing to mold the environment a bit in order to adopt to it as healthily as possible. At the same time, I feel as if they're all thinking, "Oh, god. Here she goes...the Migraine girl, being overdramatic as usual."

Regardless of my classmates' opinions, which I'm sure are less intense than I posit here, I am sick of having to adjust myself so that I can sit in class while worrying the whole time that the Migraine is going to rear its ugly head no matter what. Usually it does flare up. As I write, the laptop screen is leaned way back so that the whitish blue light doesn't glare into my worn out eyeballs. My neck and left shoulder are tight and sore, and once in awhile the throbbing, dull pain worms its way up from my shoulder to my temple and cheek, where I feel a strange fizziness in my jaw. Then it's back down again to the shoulder until I manage to forget it for a few minutes.

Because I have Chronic Daily Headache in conjunction with Migraine disease, I'm not supposed to take my Relpax until the headache has started progressing. So I'm left with a half-headache almost every day, one that has recently become full-fledged on weekend nights, presumably because my week's stress has been lifted. (Yes, stress can be a factor as well as the lifting of it.)

I've turned from storytelling to complaining, which might be another sign the pain is worsening and I need to get off the computer.

Penny for your thoughts, nonexistent readers!