fluorescent photophobia

I really should be getting out to meet my friends now, but I'm on a Migraine research roll and keep finding new tidbits of information!

Whether or not you know someone who's easily affected by the omnipresent flickering of fluorescent bulbs, this website and newsbrief should be mandatory reading for all people--certainly for all Migraineurs.

I signed the petition electronically but wished I had a pen I could bare down on with all my strength and fervor.

food trigger website

Most of us Migraineurs have an understanding, whether obvious or innate, that any potential food triggers affect each of us in different ways at different times. That being said, I've often looked to this website when I've had an impossible-to-explain Migraine attack. Once in a while, I'll see a common food or drink listed on the site, one that is a trigger for many Migraineurs, and realize I've consumed it in the last 72 hours after never having had it before (or never having had it in such quantity).

Perhaps it will be of use to you, too.

I sincerely hope the last few hours of 2007 treat you all well.

It's a Carnival!

Listen up, everyone! Diana Lee from SomebodyHealMe invited me and several other Migraine bloggers to participate in a blog carnival. Unfamiliar with this concept until her initial email, I was happy to be a part of it despite my omnipresent tendency to procrastinate.

The following is something she wrote to let readers know a little about the blog carnival. I see no reason to make any amendments, so I shall post it in its entirety here.Follow the link ("Surviving the Holidays....") to read several bloggers' words about keeping up good health over the hectic holiday season.

Thanks, Diana!

Surviving the Holidays: Headache & Migraine Disease Blog Carnival

The holiday season can be a fun time of year filled with high expectations, special events, family and friends and lots of great food. But it is also a minefield for headache and migraine sufferers. The first edition of the Headache & Migraine Disease Carnival is filled with commiseration and ideas to help you cope.

Merry Migraine!

Holiday parties are coming. Strike that--holiday parties are here. And it's only the first full weekend of December. Friday night there were two parties, and I had a slight Migraine headache before we even got to the first get-together, which started at five or so. A funny thing happened at the first gathering: I hung out with professors from the graduate program I finished a while back and did a lot of the obligatory catch-up talk. Somehow I had the energy to do this, putting my headache on the back burner while I laughed and talked with old classmates and teachers. The moment my boyfriend and I left the house and walked to my car, the pulsating pressure returned to my temples and the left side of my forehead. While most of the pain was gone (I'd taken my Relpax before the party), I didn't feel ready for the night ahead.

Instead of looking forward to the next party, I merely felt overwhelmed by the social commitments that lay ahead. As we drove toward the next party, I thought to myself, "I'm only 25% done with this weekend's parties. And I've barely scratched the surface of all the December obligations!" My head pounded more insistently. I thought about driving the car home and just staying there.

I trucked on, though. And the Migraine came back full-force the next morning. And the morning after that. (Granted, I'd had a few drinks Friday and Saturday nights, but the drinks were vodka and I drank in moderation. Usually clear alcohol + water consumption + not overdoing it = no Migraine!)

The holiday season doesn't seem like it should be particularly stressful for me--I have a laid-back family and no one obsesses over gift-giving or party-throwing or keeping with meticulous customs. But I tend to get pretty headachey each year anyway. Why is that?

Paying for medication is extra-stressful when I want to spend my money on plane tickets to visit loved ones or gifts for friends and family (or myself, dammit!). But extra headaches mean extra calls to the pharmacy. More $120 charges for Relpax, here we come! Another $135 neurologist appointment is coming up, as is more monthly medication.

But let's look on the bright side. The holiday season doesn't have to mean focusing on others, what they want, parties they're throwing, commitments we're expected to fulfill, etc. What is it we're told over and over again? Oh yes--the season is about giving. Let's learn from this.

1. Give to yourself.

If you're not up for a party, don't go. Pushing yourself could mean you make yourself sick. Maybe it won't, but why risk it? You are THE most important thing in your life. (Or one of the most important, if you have others you're very close to!) Take care of yourself. Don't stretch yourself too thin.

Maybe you could pamper yourself a little bit. Have you ever had a massage? Oh, I highly recommend this. A tip for you: be sure to tell the massage therapist about your Migraine patterns and any spots on your body (esp. back or neck) that when tight and in pain might be triggers. An experienced masseur will know how to treat you. My massage therapist is a TMJ specialist and dons some latex gloves so she can massage way back in my cheeks, relieving my TMJ like you wouldn't believe.

2. Expect that others will be there for you, too. 'Cause they will!
Your friends want you to be well. I'm guessing that they're aware of your Migraine disease (or whatever chronic pain disorder you might have). If you need to bow out of get-togethers, if you're overwhelmed and need to leave a party early, or if (as in my case), if you can't afford to get as many Christmas gifts as you'd like because your "extra" money goes to prescription drugs, that's okay! And your friends will understand. That's why they're your friends. Trust that they'll be there for you.


Merry Christmas to me! I guess I'm buying myself some drugs.
I wish you all well.

*If all goes as planned, this will be part of the HeadacheBlogCarnival. Link to follow.

prescription drug prices are out of CONTROL

Let's just talk about how zonisamide, the generic form of Zonegran, costs me $25.00 for a month's supply at my local Kroger pharmacy. I think the regular price is $35.00 but they gave me a lower price to keep me from leaving. That's 90 pills for $25. Pretty nice, eh? (The brand-name drug is way more, as I'm sure you could guess.)

As I've mentioned before, I have no insurance, so all prices mentioned here are what one must pay if she has no health plan and no prescription coverage.

I was out of town for Thanksgiving and didn't have enough medication to last me the whole time. I figured I'd have my neurologist call my prescription into a Florida pharmacy near my parents' house for the sake of convenience. Walgreens was the closest place--heck, there are about 83 within five square miles of their subdivision. Ridiculous. The same exact number of the same pills (same generic drug manufacturer, mind you) had an unbelievable price tag: approximately $130 (give or take a few bucks) for 90 days. No, they don't match prices. (Kroger and other leading and not-so-leading drugstores do.)

IT IS SCANDALOUS. Truly. They do this just for profit, just because they can. If you know of some other reason, then let me know. I doubt that Kroger gets the drugs for a lot cheaper than Walgreens does. I bought a few days' worth instead. I spent $21 and change on enough pills for vacation--that's almost as much as I spend on an entire MONTH when I'm at my home sweet home.

I'm so angry.
Justifiably so, I think.

Figured I'd share my righteous indignation with you all on this fine, overcast Sunday afternoon.

okay, so I'm a wimp

I shouldn't have claimed I was going to stop taking Zonegran. I was going to, I was! But I've wimped out, at least for now. There's the matter of money--I have no insurance and can't afford the $135 it costs to have an appointment with my neurologist, plus the tank of gas it takes to get to and from his office. More significantly, there's the matter of my nervousness, my anxiety. What if my Migraine frequency is on the rise once I go off my daily meds? What if the negative aspects I have interpreted as side effects from the medication are actually just newly acquired sides of my personality? Oh, god!

As you can see, I'm fearful. Nervous. Anxious. And not sure I can live up to the risk of going off my preventive medication even though I've long since decided the negative side effects outweigh the benefits.

Has anyone out there dealt with an issue such as this? Words of wisdom?

yoga

I have toyed with the idea of going to a yoga class for years now. A few months ago, I announced to my friends that I'd be starting yoga. That I'd bitten the bullet.

And I still didn't go. I don't know what it is about me that makes me not want to start. New and unfamiliar territory doesn't feel good to me, but once I've gone in and made a place for myself I usually feel pretty good (even in the rare cases that I'm feeling good just because I'm getting out of there!). I half-dread the first class. I'm not flexible, not hep to the lingo, unaware of what to do with my body when, and I certainly don't think I'll know people there. Would I want to know people there?

I know what I would say to myself were I an outsider giving unsolicited advice. "You'll be fine! No one's watching you, they're busy doing their own thing. If anything, people will be supportive and helpful and glad you're there." "Everyone's at her own level--the instructors understand that." "Good for you for going--I'm sure it'll benefit your health."

Already checked out the environment: asked a friend of mine who goes to the same yoga studio about the lighting situation. Apparently we're in the clear as far as fluorescents go. Yeehaw!

Today I got a yoga mat from someone on freecycle.org. Next I just have to show a little commitment and go to a class. I need to be dared first. Or paid. Or something! Somehow knowing it's going to do wonders for my health isn't enough. What's wrong with me?

to drink or not to drink

You may recall that I gave up drinking wine well over a year ago, finally admitting to myself that it was an undeniable and evil Migraine trigger for me. Shortly thereafter, beer was added to the list and, after much whining and denial, I finally stopped drinking it. I'll have a bottle now and then if I'm really craving it, but never enough to bring on a headache. Wah. I miss beer.

In hearing about Dr. David Buchholz's relative obsession with foods that trigger Migraine, I thought he said that clear alcohols weren't a trigger at all for many people. Perhaps I misread. According to this NPR article, Buchholz holds that all alcohols are a trigger but there seems to be a scale of what affects Migraineurs the most. Red wine as at the high end of the spectrum (meaning it is a very common, serious trigger) and we decrease from there according to the liquids' transparency--hence vodka being being on the low end. (See NPR article for Buchholz's exact quote, or search for his original studies if you'd like.) Buchholz has a book that I've never read called Heal Your Headache: The 1-2-3 Program. Apparently there's some debate in the neurology field over whether or not controlling foods you eat can control your headache patterns as it did for the woman in the article. I am fearful of such an approach, as I'm not sure at all of what I would eat. What's left? Even cutting out onions and bananas sounds nightmarish.

If anyone's tried this approach and has feedback for us, let us know!

No blog attention means missed opportunities!

I opened the email account reserved particularly for this blog today and found a week-old email, one that must have been sent to me mere minutes after the last time I checked my account. A freelance writer named Alicia Blog is putting an article together for Health Magazine. She's interested in strange headache triggers and wanted to talk to me (yes, me! somewhat anonymous, occasionally-writing me!) about ponytail headache, which I experience frequently but don't mention all too much here. She'd seen a March 2006 blog entry wherein I mentioned this elusive, painful phenomenon.

I've written her back but fear it's too late to have the short phone interview she mentioned. Ah, well.

In any case, the article should be pretty interesting--a piece dedicated to unusual triggers for headaches? Sounds like this will be great reading for us Migraineurs who want to get the word out to the so-called "normal" folk that yes, indeedy, foods that are banal for most can make us shut the drapes, call in the troops for help, and pop a $25 pill. That is to say, for example, a banana may mean sudden death for some and a lick of Nutrasweet may seem to be the end for others.

If she gives me word on when the article comes out, I'll be sure to post it here!

sleep sleep sleep

I know I need to get on a normal sleep schedule someday. That a disrupted sleep schedule can lead to Migraine episodes. Boy, do I ever have disrupted sleep and abnormal sleeping patterns. I certainly don't have a predictable schedule, that's for sure.

But how can I de-night-owl myself? I love staying up late. And I need several hours of solid sleep to feel up to having a whole day of work and play, so that means waking up at a late hour in the morning if I'm going to bed late. And on the days I have to work earlyish and have gone to bed lateish, that means getting not as much sleep as I'd wanted, so after work's over I'm definitely ready for a nap.

And lately naps haven't been reinvigorating and rejuvenating. Instead of making me feel better, the last two naps I've indulged in have ended up leaving me feeling migrainous. Go figure.

It's a quarter to three in the morning. I'm going to convince myself I'm tired somehow. Sleep time.

a month of headaches

This.
month.
has.
been.
awful.

Every day marked by at least a little pain; every few days (at the least) marked by a throbbing Migraine headache. The hot weather, the impending afternoon rains, the menstrual cycle that comes around like clockwork. I think the TMJ is rearing its ugly head again as well--perhaps this is a side effect and a cause of the increased anxiety surrounding the ever-increasing headaches.

My Migraine headaches have been worse this month than they have in YEARS. I have become a hermit again but am determined not to get me down. GRRRRR...

2 days in a row with no headache? Can it be?

As I may've mentioned in my last post (I'm too lazy to look back...), I have been suffering from the longest stint of Migraine-infused days in my recent history. This streak beats even my worst menstrual Migraines--I've been repeatedly put out of commission for days on end as the temperatures in my town soar and hover right around the 100 degree mark.

Friday night I worked for a couple of hours while suffering from a pretty bad headache. I had taken Relpax and Naproxen around 9:30, but by 11:20, I felt no relief, just the ever-throbbing pain getting worse. Being around people and music and noise and chatter wasn't helping, so as soon as my duties were done at 11:30, I split, taking up my beau's offer for him to close up shop for me. (All that was left to do was count up some money and pay myself and the band I was working the door for.) In any case, I was home in bed by midnight, utterly awake but unable to do anything but lie still.

Saturday, no pain to speak of.
Sunday, same scenario.

I feel as if a great weight has been lifted. I timidly step into this painless territory after nine or ten days of not being able to have a normal life, and I'm even more nervous than usual that I carry a teensy, ticking time bomb, that my pain-free hours are short-lived and that I'd better live it up before I get another Migraine headache.

That's all. Hope everyone is feeling good!!

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.

my spelling has gone to the dogs

I pride myself on my keen eye for language, my editor's knack for spotting grammatical and punctuation errors in the blink of an eye. Terrible spelling quite literally makes my stomach turn at times, and when people don't know how to make things plural or possessive (or, god forbid, plural-possessive!), I am simply beside myself.

Something else I have always been known for? My memory. It is definitely one of my strengths. I can remember words, faces, places, times, and events quite well.

But all this changed without my quite realizing it. All this changed in the last year or so, the year during which I took Zonegran. I'm still taking it but am finally to the point where I've decided to go off (with my doctor's help, of course, as weaning oneself off any drug like that is not a task to undertake alone!).

"Difficulty word-finding, problems with short-term memory," and "weight loss" were listed as side effects of Zonegran that might effect some but would go away within the first 6 weeks or so. For me, I wasn't terribly effected in the first several weeks. I joked about it at first and wasn't sure if the verbal stumbling I experienced now and again had been worsened by the drug. Not even in the first couple of months did I notice much. Who knows? Maybe there wasn't much to notice at first. For a side effect as elusive as "difficulty word-finding," it's not easy to pinpoint where the problem begins and ends. All I can tell you is that several months ago (which was several months after being on Zonegran), I was talking with my boyfriend and found myself increasingly frustrated with my inability to come up with the simple word I was looking for. That frustration led me to think back to other moments in my recent past when I'd not been able to come up with the words I'd been looking for, when I'd not been as clear in my writing or speech as the Old Me.

When I type, letters come together on the screen to form words I've known how to spell for decades. But suddenly I don't know how to spell things I mastered in third grade. "Is it 'i before e except after c'? Okay, yeah. That looks right." I write letters and find myself scratching out words time and time again, having to rewrite them until I get the spelling right. This is not like Regular Me, Old Me. (The end of that sentence back there? I wrote "write" at first instead of "right." For a perfectionist like me, that's not a mistake I'd make frequently, yet these days I do it daily.)

I could go on and on. I can't vividly recall conversations I've had as I used to, I can't remember how I know someone whose face is ever-so-familiar. A couple months ago, I spent lots of time with one of my best friends who lives in Europe. I expressed my reservations about my brain, about how dumb I've been feeling lately, about how I hoped it was the drug I was on and not me that was screwing with my thoughts and spelling and writing and speech. She revealed to me that she'd noticed a marked change over the course of the last several months. (She saw me when I first got on Zonegran a year prior to this conversation, then again once every few months.) She said if she'd never met me before I'd still come across as smart, but that having known me before and now, I certainly don't come across as intelligent-sounding in my writing and speech.

That really hit home.

I know there are other factors that could be (and probably are) influencing my brain right now. I'm not taking any classes, but that doesn't explain this. I did a more extensive search online for Zonegran and more of its *real* side effects (i.e., what patients say and not necessarily what comes across in clinical trials) and found MANY people who had to quit taking it due to memory loss, inability to spell and write, etc.

I won't even get into the weight it's caused me to lose.

So now I shall deal with having to go off of the meds. I don't know where I'll go from here. I don't want to go on more preventive daily medication, but the frequency of my Migraine headaches may call for it. I'm so tired of looking for The Answer. An Answer. I wish it would just go away.

Headache #5 of the month rollin' on in,
The Migraine Girl

traveling again

I just got back in the country after nearly three weeks of travel. The last time I was out of the U.S. for a significant length of time, I happily surprised by having only one Migraine headache in six weeks--a miracle! Before and after that six week period, my Migraine pattern was pretty much normal (frequent headaches, intense pain when they did occur).

This time the pattern didn't change. Thanks to my medicinal regimen and lifestyle, my frequency is still down compared to what it used to be about a year or so ago, and my overall pain isn't as bad as it used to be. Still, I was sad to feel three distinct bad headaches rear their ugly heads during my 18 days out of town--keeping the average up. (I wasn't on my period.) Having a Migraine while out of town is rough in many ways. Luckily I was traveling with one of my best friends who's long since understood my patterns--she and I've been close since we were freshmen in college and I was an undiagnosed Migraineur. Then I was just the friend who frequently cancelled plans, having to turn out the dorm room lights and cancel plans with no warning whatsoever.

With the exception of one or two nights, I had a hotel to stay in. I find this such a load off my shoulders--I don't have to worry about my Migraine attacks as intensely when I know I have my own space to go home to. Times I have had to retreat to others' cramped apartment floors or fold-out beds are times I feel more stressed out and more prone to attacks.

In any case, I made it through the trip. French bars are all too smoky and, despite their charm and music and my desire to stay out late, the cigarette smoke got to me and gave me quite the Migraine. 'Twas sad to skip out on the wine while there, too, but I saved some bucks, I'm sure.

Jet lag calls. Bonsoir!

have meds, can travel

I'm about to embark on a relatively lengthy trip. It's certainly going to be a taxing one, but one full of fun and surprises and friends and tourism, tourism, tourism. Can't escape that when one goes to Europe.

But I'm nervous. I'm nervous about getting a Migraine when I'm traveling. In the past, my pattern has been that I get a Migraine the day of travel, especially during long car trips or plane rides. This pattern's been broken up a bit in recent years, perhaps because of Zonegran--perhaps not. I can't be sure. Once I'm in a new country, however, I tend to do pretty well for awhile. A few years ago, I lived in Costa Rica for 6 weeks and had one significant Migraine the entire time I was there. The lifestyle, the lack of "regular life" stress, the diet, the routine--all of these things probably contributed to my overall well-being.

I'm hoping this good fortune comes back for the next three weeks of my life as I venture to some European countries. I'll be armed with Relpax and Naproxen, of course, but we know I can't take those more than a couple days in a row due to the ever-looming MOH (medication overuse headache).

Fingers crossed.

Bon voyage (to me!)

wary of taking the meds

Days like today I'm not sure what to do. My Zonegran seems to have worked in many ways, one of which is this: it slows the overall Migraine attack process, often stopping it in its tracks and making one stage of the headache linger for hours until the slight pain goes away, when formerly that stage may've escalated quickly and turned into a really painful headache.

This is problematic in that sometimes, perhaps 20% of the time, the headache does rear its ugly head in the most painful of ways, and it makes up for lost time. All the moments the really severe pain delayed in setting in...

(NOTE FROM OCT. 2007--I STOPPED WRITING THIS 6 MONTHS AGO. NOT SURE WHY NOW. THOUGHT I WOULD HIT "PUBLISH POST" ANYHOW!)

Is it working?

When my loving, good-natured friends and family ask me about my healthcare regimen, I try to remain energetic as I list the things I ingest each day, the activities I try to do to keep the Migraine attacks at bay.

I take 400 mg of Vitamin B2 each day--that's about 23,000 times the recommended daily allowance. Ha! I read a study online linking that daily intake over a long period of time to an overall decrease in Migraine frequency. I started taking the vitamins each day not because of this googled study but because of my neurologist's very strong suggestion--the search is what came after his suggestion.

Along with the B2 is a capsule of Magnesium. 500mg of it, to be exact.

Added to that daily list of fun things to swallow?

• 300 mg of Zonegran/Zonisamide (which is now finally generic, I suppose, for the price went down from $100 for a month's supply to about $40 at my local grocery store pharmacy)
• Omega-3 (fish oil)
• 20 mg Amitriptyline (Elavil), which I was on long ago, got off, and just recently re-started

I go to my massage therapist/cranial sacral therapist whenever I can afford it. Unfortunately, this hasn't been too frequent of late. For my last few appointments, she hasn't done much cranial sacral therapy because my visits have been right after a Migraine headache and she is unwilling to manipulate my cranium at all and possibly trigger another attack. (Thank you, wonderful woman.)

Of course exercise is always recommended, as long as I don't overexert or overheat myself and get a Migraine that way. I definitely don't get as much exercise as I should; this I know.

Minimizing exposure to triggers is something I've gotten quite deft at; managing stress is another lifelong issue I'll never master, but I am coping pretty well (for me).

So back to the subject of this entry. Back to the question that I am always faced with as soon as I tell my friends and family about my lifestyle changes, my new (or old) medications, that new trick I read about in a medical journal:

"So, is it working?"

I feel like I don't know what it is that's doing the trick--or not doing the trick--anymore. I have a so many elements in my life, so many chemicals running through my system. How am I to tell which one is the one that's working? Is it their complicated, complex relationship with one another that does the trick, at least most of the time? If I removed just one of the pills each day, would the whole system come grinding to a halt and leave me in pain, or would I feel even better than I do now?

I am not in a well-controlled scientific study. I cannot aptly determine which medication is the one that's working best for me. Part of me thinks that my body has gotten a bit better on its own over the years and that I could cut out all this expensive treatment and get just as many awful Migraines as I do now--and have just as many gloriously pain-free days as I do now.

But most of me is pretty sure the medication's helping. That I need the neurologist's words, reassurance, and comfort. That this disease is certainly way bigger than I and that I may never know what it is, exactly that's working--or how well it's working at all.

So my answer to family and friends remains the same. I don't know. I just don't know.
Were this a personal essay, one with sparks of humor and hints of charming self-deprecation, my answer would provide you with an amazing conclusion that would make sense of it all.

But it's just not the case here. I just don't know what's helping, and I'm too scared to take something away to find out if it hurts.

movin' on up (and over)

Last night--or was it very early this morning?--I woke up in a haze and stumbled to the bathroom, suddenly realizing I was parched. I filled my glass up with water and had several gulps.

It wasn't until I was headed back to my bedroom that I registered the pain that had been with me for the preceding little while, the pain that had presumably helped to awaken me. It was as if a hollowed out section of my head had been left gaping right there in the middle of my forehead. It felt like my Migraine pain, but it was so strangely located for me (mine are on the left side of my head 90% of the time, the right side roughly 10% of the time, and in the neck and back of the head) that I didn't know what to make of it.

I felt as if I had a strange, dull, open wound in my forehead. It was throbbing and had been stuffed with cotton. The pain wasn't horrible enough that I couldn't sleep--probably about a 6 on the 10-point scale.

I was so exhausted and out of it that I went back to bed.

I didn't remember the episode until this evening, about an hour ago when the same pain made its slow return in the same place, but this time with little tiny wings extending on each side of the imagined hole, the wings flapping lightly and ever-so-painfully above each eyebrow.

Time, I say, for drugs.

Time, I say, for bed.

It's disconcerting for the pain to have moved, to have migrated again. As much as I don't like the Migraine headaches that have made their home in my skull for the last 14 years, there's a twisted sense of comfort in expecting where they'll be, knowing where they'll show up and usually knowing when. For the Migraine to appear in a morphed form in another room in the house is strange, unfamiliar.

Best to evict it and have it make its slothful return in a few days to where it belongs, tucked in a corner behind my left eyeball.

You've got an hour to get out of here, headache, or I'm throwing you out on the lawn.

twitch twitch twitcheroo

My left eyelid has been twitching for three days straight.

It's really quite obnoxious. I keep thinking it's linked to some sort of stress I have, some underlying thing I should be worried about.

But I don't know that there's any HUGE thing I need to be worried about.
Perhaps the fact that I'm concerned, however distantly and vaguely, about being concerned about stress I may not even have, is a concern in itself.

Hmm.

Twitch.

Twitch.

Twitchtwitchtwitch.

Why won't it go away?!

Bye-bye, beloved beer..

Or, "triggers creeping out of the woodwork"

I love beer. I don't tend to over-indulge, but boy oh boy do I enjoy sitting on my screened-in porch on a warm day and slowly slugging back a cold one. I relish the thought of being at my family reunions, a fancy keg of microbrewed beer only paces away from where we sit in the gazebo--I walk over and have just half a pint more before bed. (Now as I write I feel I must acknowledge that this past summer I didn't let myself have much of this beer, even on nights when we drank more than one. I'd have a little bit of the hoppy microbrew and then switch to something less fancy and lighter, like Yeungling or, god forbid, Bud Light. I felt not-so-well if I had more than one heavy beer, and my sister, who'd once been a Migraineur herself, felt the same way. Hmm...)

But something's been happening in the last couple of months, something new and utterly unwelcome: beer has become a harsh Migraine trigger. At first I only noticed this if I imbibed a couple too many on a weekend night and woke up the next morning with a Migraine. I told myself that I deserved this, knowing all the while that know one ever deserves Migraine headache pain. But then it started to happen when I only had a couple and was far from getting that hazy beer buzz.

Earlier this week I ventured out of my self-imposed Beer Hiatus and tried to see if maybe this beer trigger was a fabrication, that maybe there were other triggers in the environment I had been unaware of at the time of those Migraine episodes. I had a couple light beers at my friends' house while staying there overnight on Tuesday. Everything was fine. Whew.

Had one--just one--on Wednesday while at another couple's house for dinner. A Corona with a lime this time. Not my favorite, but I figured it was safe. Still all clear. Thank goodness.

Last night I had three free beers at an opening downtown and was sick with Migraine by midnight. (I had paced myself ever-so-slowly, having one at 6:30-ish, one at 7, and one at 8:30.) Was it the fact that this beer was stronger in flavor and ingredients? (It was a locally-made pale ale, not a light beer as I had had earlier that week.)

Is it possible that certain types of beers are okay?

I read online once that a well-respected neurologist believes that most Migraine triggers can be traced back to food and drink intake. When people name alcohol as a trigger, he doesn't think all alcohol needs to be cut. Apparently some clear alcohols such as vodka are safe for some.

I don't know if I want to experiment much more, at least for the time being, but if anyone has any feedback he or she'd be interested in posting, I'm all ears.

Thankful to be feeling up to par again, hours later,
me...

Doctor Anxiety

Tomorrow I'm going to see my neurologist. I am pretty damned nervous about this.

Don't get me wrong here: I really like my neurologist. I respect him. He's friendly, he's kind, he's patient, he's smart, and he listens. He's been willing to give me as many samples as I've needed since I've not had prescription coverage. The nurse practitioners who work with him can sometimes be a little short with me, but let's face it--I don't answer their questions, questions that are supposed to have one-word or numerical answers, the way I'm supposed to. I'm probably not the most simple patient for them to deal with. Who knows?

In any case, this is not my point. My point? I'm nervous. I'm anxious. And I'm trying to pinpoint the reasons why.

What if I don't ask him all the questions I mean to ask?
What if I forget to bring the phone number for the new pharmacy I'm using?
What if in rating my headache pain and frequency on that Likert scale they use I inadvertently make it seem as if my Migraine attacks have been far better or worse than they've actually been?
What if I ask him about the elimination diet, am displeased with the brevity of his answer, and am too timid to ask him for more information?
What if, what if, what if?

Mainly I worry about forgetting something during my expensive, all-too-rare neurologist appointment and know that I won't get to talk to the doctor himself again without booking an appointment a month in advance, using 3/4 a tank of gas to get to his office, and paying $135.

Frustrating.
Stressful.

And it'll all be okay.

three things that changed my point of view this week

1. I've discovered a really great site, one I can't believe I didn't stumble across before.

MyMigraineConnection.com

Definitely worth your time; check it out. Peruse people's stories, migraineurs' tips and support, and see what others have to say about their own experience. As much as our doctors can help us, it's in other patients' stories we might be able to find true camaraderie and comfort.

2. I've read book after book after book about Migraine disease. If you've read my blog before, you know I love Paula Kamen's All in My Head. I've a new favorite, for a different reason. The following volume is thorough, relatively up-to-date, pretty easy to follow even for those of us who aren't doctors, and quite interesting.

Migraine and Other Headaches by Stewart J. Tepper, M.D.

3. Migraine Podcasts

For those of you who listen to Podcasts, look up the keyword "Migraine." You'll find a few good podcasts at your fingertips, including one aimed for doctors that's still pretty useful for all ("Headway on Migraine Headaches") and Teri Robert's "MigraineCast."

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.

pee in a cup

Had to pee in a cup for a routine drug test yesterday--have to pass the test in order to formally be granted the new job I've already been given, for all practical purposes. Imagine the raised eyebrows on the medical assistant's face when she asked me to write down any prescription medications I was taking in the little box provided on the intake sheet: "Oh," I said, "I brought my list," whipping out my word-processed document that listed all the medications and vitamins I ingest each day.

As if one little box would fit them all! Ha!

Then, two minutes later, I emerged from the bathroom stall and handed her my unpleasantly warm plastic cup of neon yellow urine--it has acquired this hue ever since I began taking vitamin B-2 each morning as per my neurologist's suggestion. Perhaps she thought I had given her a small vat of warm lemon-lime Gatorade? No one will know, but let's hope I entertained the young woman who had appeared completely bored and expressionless up until our encounter.

Ah, neon pee. How I love thee.

O! Canada

What with Patriot Act-driven paranoia seeping into my mind just a little bit now and again, it strikes me that this might not be the best idea, but I'll say it anyway: I bought some prescription drugs from the internet. A legit site in Canada that sent me my drugs WAY below cost what they would have been at my local pharmacy. For a girl who has zero insurance (with no insurance or full-time job with benefits on the way), this was a necessity I had to cash in on eventually, and eventually came in February 2007.

The service prompt, the pharmacists thorough and understanding. I'll do it again in a heartbeat and for a fraction of the cost. If you're interested in what company I went with, I'll let you know--I'm not about to advertise for any particular place out here in the open, but I will recommend what worked for me if you're daunted by all the options and are scared of getting a place that seems apt to take your money and run.

springing into action?

The weather has been gorgeous lately--ridiculously high temperatures for early and mid-March, puffy clouds, temperatures in the 70s, and sunshine, sunshine, sunshine. This, of course, also means flowers and pollen and runny noses and sneezing.


For me it also means a stuffy head, tight neck, and increase in Migraine frequency. I've grown used to the fact that my Migraines are triggered by shifts in barometric pressure: when it's going to rain, my temples and neck seem to know it before I even step outside or check the weather online. Perhaps it's because I've only really started studying my Migraine patterns in the last couple of years; perhaps it's because seasons don't change all that frequently--in any case, from spring to spring I forget how frustratingly stuffy and painful my head and body get while the weather patterns shift and winter disappears.

It's not at all uncommon for Migraineurs to be affected by changes in weather. It's true that sinus medication might ease symptoms, but there's always the risk that taking over-the-counter medication will (a) lessen the effectiveness of prescription medication, (b) lead to an increase in the number of rebound headaches, and/or (c) lead to more intense Migraines.

Yet another conundrum.

I don't mean to simply use this as a forum for my own venting. What I found today was that spending the day outside was slightly painful but really enjoyable. I "paid for it" by having to lie low in the evening time, having a quiet dinner and then canceling my tentative plans to spend time with friends because my headache's just bad enough not to socialize, but not bad enough for me to want to take prescription meds for the second day in a row.

So for me, it's bedtime.

For you, I wish you a pleasant day or evening, depending on when you're reading. Take care.

You ARE out there!

After a stressful little while there, I finally was able to log into my blog again. Not sure what the problem was, but I was getting rejected again and again and tonight the mysterious "incorrect" password let me into my account after all.

And look what I found! Some wonderful feedback from some of you thoughtful people, people I didn't know were even reading this. To my chagrin, my local library's copy of Jeffrey Bland's 20 Day Rejuvenation Diet is checked out, so I have a hold placed on it. The more I read about it and other not-so-stellar-sounding diets online, though, the less sold I was on the idea.

But I feel, to be redundant, rejuvenated by some of your feedback, and I think that the books you mentioned may be more up my alley than the one I had recommended to me. Perhaps the next trip to the library--which is actually tomorrow afternoon for me--will entail my checking out some or all of those books to see which ones work for me. If the library doesn't have it, I'll have to see what the bank account can afford me right now.

Again, thank you, thank you.

My massage therapist/cranial-sacral therapist is quite well-versed in the innerworkings of the body and says that this is the perfect time of year to try doing an elimination diet, so if any of you are in my same boat and are thinking of doing it, maybe this is your time!

Now I must get to bed...there's a long work day ahead.

Thanks again for invigorating me and give me such great feedback. I hope to do the same for you in an upcoming post.

the elimination diet

Has anyone ever tried this to see if he/she can better identify Migraine triggers? Did it work for you? I'm thinking of trying this but am not sure I'm sold on this approach. Feedback would be really useful if you've got a chance to give me some. Relevant websites would also be most helpful.

Thank you!