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.