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.