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