perfect timing

I've mentioned before how grateful I am to have discovered the Partnership for Prescription Assistance (http://www.pparx.org/en/prescription_assistance_programs). I enrolled quite a while ago--with my doctor's prescription (and a low enough salary to make me a deserving candidate), I now pay less for drugs than I did when I had insurance. And when I say "I pay less," what I mean is I PAY NOTHING.

Yesterday and today I've had morning migraine attacks followed by druggy, semi-wasted afternoons. I love the quickness of Maxalt but not the ghost of a Janet it leaves behind. I've been working like a madwoman of late, so maybe this is a good chance to catch up on reading. (Today I finished three books!)

But taking Maxalt yesterday and today meant I was already halfway through with the samples my doctor gave me a few weeks ago. What to do if another migraine hit in the next week? Did PPARx ever get my application? Would I be approved for more prescription drugs through their service?

I checked the mail and voila: 5 packs of Imitrex just waiting for me. All it took was filling out the application, proving I am not rich, and getting my doctor to check me out and write a new prescription for triptans.

How my mind is eased when I know I have drugs if I need them. Sometimes just having them on hand makes me feel a million times better.

Dinah won't you blow, Dinah won't you blow...

WARNING: THIS POST MIGHT HAVE TOO MUCH INFORMATION FOR THE NON-MUCUS-FRIENDLY OR FEINT OF HEART.

I have had this bout of sinusitis for at least (at least!) a week now. Despite a Z-pack, lots of rest, and some doctor-recommended over-the-counter meds, the cough and mucus are not going away as quickly as I'd expect. Ugh.

On Tuesday night, the night before my doctor's appointment, I was doing the routine nose-blow-before-bed move when, all of a sudden, liquid started coming out of my right nostril. A lot of it. For a few minutes, I continuously blew my nose and clear, very warm water (water?) came out of my right nostril. At first I couldn't help but be relieved: it seemed that as soon as this strange liquid was brought forth, the pain in my cheek and ear immediately became MUCH better. So much better. But then I got a little nervous. I've never seen anything like that happen before and even thought about calling J. to see if it'd ever happened to him. "Oh, you're worrying for nothing," thought I. After the few minutes of the clear stuff (which was nothing like mucus, mind you) coming out, it seemed the coast was clear. I sat on my bed cross-legged and--suddenly--plop! It was dripping from my nose and onto my pant leg. GROSS. A couple more tissues and everything was fine. As if it'd never happened.

I told the doctor about this episode because it seemed so strange to me. Okay, my cyberchondriac self knew the chances were slim, but couldn't there be a chance I was leaking cerebrospinal fluid? (I didn't voice this concern to the doctor, but I had voiced it to myself the night of the weirdness after a twenty minute internet search.) As I told her about the episode, she frowned and looked at me: "Well, since you edit medical documents, I'm guessing you might be a bit concerned about a cerebrospinal fluid leak?" "Yes!" (I didn't mention that I don't edit anything dealing with CSF leak ever and that it was a late-night Googling session that made me aware of the problem in the first place. Let her think I have professional interest.) She told me that she really doubted there was a CSF leak, but that if it happened again like that I should call her and make a trip to the ER. She said it was quite possible that the severity of my sinus problem could have meant that for days my mucus has been building up in my sinuses. I was staying well hydrated, and the water I was drinking wasn't able to mix well with the older, thicker, nastier mucus so the watery stuff was sort of building up behind the old, gross mucus. Once I cleared that old, super-green mucus out for the moment, the watery stuff was released in a gush. Maybe. (Yuck, right?) She then said, "And it's not as if you've had any head injury lately, right?" "Actually, I was in a car wreck in mid-November and had a minor head injury." Oh. Then let's keep an eye out just in case something else is up, kids!

The waterfall phenomenon has not happened again, but that doesn't mean I'm not keeping an eye (a nose?) out just in case.

And then tonight something strange happened. I have been feeling a bit better today--just a few coughs and much less need to blow my nose (though I certainly am obviously sick, both audibly and visibly). Had a migraine this morning (period-related) but Imitrex wiped it out immediately. I blew my nose before settling into bed when suddenly I realized I couldn't stop. Couldn't stop blowing my nose, that is. I spent five minutes blowing my nose, people--and everything was coming from the right nostril. It seemed each tissue must be my last, but within 2-3 seconds I could feel more coming immediately. Then the clear feeling for a second, then the need to blow my nose. (Here's when I go into even more detail, for those of you who are as gross as I and have continued reading this far!) The mucus was green but not as thick as it's been for the last few days. It was green and really thin and liquidy. And it kept coming. For 5-7 minutes. TWELVE tissues' worth.

Does anyone have any insight? I'm hoping this all can be easily explained. I have never had such a sinus problem last so long, so perhaps this is just par for the course when sinusitis has progressed as far as mine has.

Still--let me know your thoughts, even if you are as gross and crazy as I have sounded in this post!

Goodnight!

Thursday is TODAY

Well, as I suspected, the pattern continues. I felt really great this afternoon and, the moment I realized how great I felt, tried to push the thought of an impending Migraine attack. (As I've mentioned before, I often feel wonderful right before my head pain sets in.) J. and I went grocery shopping and it was at the store I started feeling light-headed and icky. An hour later, I was home but not any worse for the wear. I managed to tidy up very slightly for this evening's book club meeting at my house and even baked some brownies and made guacamole!

Around 9:15 or so, the blurry vision took ahold and the left side of my head started feeling...well...not right. I don't tend to consciously feel my head when I'm well; it's only when I'm coming down with a Migraine attack (or head cold, for that matter) that my body remembers my head is even there.

It's 10:30 and I am going to lie down in bed after taking an Imitrex and my nightly regime of pills.

Somehow I'm comforted by the fact that the Thursday Migraines are getting predictable. This logic seems screwy--I don't want to EXPECT them, but I do want to be prepared. Oddly enough, Thursday has been my favorite day of the week since I was little. I intend to keep it that way--Migraine, you will not get me down!!!

my near-death experience

Today I had one of those Migraine attacks during which I felt so awful and so sick that I gave up all my hopes and dreams and figured there's no chance in hell I'll ever accomplish even one-tenth of what I want to do. I lay in bed, afraid to move for fear of waking the nausea beast. My duties weighed heavily on my mind: call the leasing agent to talk about the bookstore; talk to the staff at the shelter about tutoring adults; clean the house; make sure everyone knows tonight's girls' night is canceled; send off those letters I keep forgetting about; make sure I have all my meds and clothes packed for this weekend's trip; oh my god I have nothing to wear to the high school reunion Saturday; oh my god why do I care?

As you can guess, it was hard for me to fall asleep and rest.

While babysitting this morning, my head acquired that good ol' stuffy feeling it's been getting most days for the last several months. Driving in the car, E., the three-year-old, was singing to herself in the backseat and her higher-pitched words pierced my ears. "Oh no," I thought, "is this the beginning?" An hour later, I was leaving the kids' house and my vision felt blurry. I tried to ignore the signs, for oftentimes they end up melting away into nothing and I feel fine and migraine-free.

That was not the case today.

I decided I needed a power nap. I woke up feeling less sleepy but more achey. I called the mom of the kids I babysit as I made soup, leaving a message in which I asked if I could call off for the afternoon. I had a Migraine and it didn't seem to be going away. If she needed me to come, I could, but I'd probably want to lie on the couch while the kids played.

I sat down with my bowl of hot soup and dipped my spoon in. The first time I brought it to my mouth, a wave of nausea overtook me and I thought I'd be sick. I stood up to ready myself for that disgusting trip to the bathroom but was too dizzy to stand. In the space of ten minutes, my Migraine had gone from tolerable to utterly debilitating. I cancelled the babysitting date for good and lay down for hours. HOURS. Two Imitrex pills, one Naproxen, and several mini-naps later, I emerged feeling woozy but pain-free.

Now I don't feel so despondent and hopeless, but today's episode did give me pause. Most Migraine attacks are ones that I can medicate quickly and all but cure. This one and the one I had two weeks ago were especially resistant to treatment, and I wondered what I'll do when one of these stubborn ones come on while I'm a bookstore owner. Who will take over last-minute? Can I put a "Back in 5...hours" sign on the door? These are issues I definitely have to work out, but I cannot--CANNOT--let them stop me from opening my business. Right?

yippee for prescription assistance programs!!!, or, FREE DRUGS

I've been enrolled with success in the GlaxoSmithKline's Bridges to Access Program. There's information on it here: http://www.bridgestoaccess.com/

I can get my Imitrex for free from them (as I understand it) after I send in the bulk of my paperwork, which my advocate (an assistant at my neurologist's office) helped me fill out. For now, I'm enrolled for two months and can go into my favorite retail pharmacy (my local Kroger, where I love the people) and get a 60-day supply. The initial 60-day supply is accompanied by a $10 copay per fill, but that's about 1/10 as much as the Imitrex would cost me normally!

Already I'm in the Together Rx Access program. That's the program with the least amount of hassle, but it's just a discount program that offers cuts but not ones as big as 90% off the regular price. It'd be of more use to me if I didn't belong to Bridges to Access already, as the only drug I'm currently taking that is on the Together Rx Access list is Imitrex--and I can get that for [almost] free!

Finally, I applied for my free trial of Maxalt. All it takes is a printer and a couple of stamps--one so you can mail the form to your doctor to request a prescription for 3 Maxalt pills, and one so you can include a self-addressed, stamped envelope for your doctor to send you the prescription and forms back!

In the works is a plan for me to get free (or cheap) Maxalt, too. I forget which program covers that, but my doctor has sent in the paperwork to the proper recipient by now, I'm sure. I can't say enough about The Partnership for Prescription Assistance Program (PPARx). I'm so much more calm when it comes time to take a triptan, not nearly as stressed as I usually am for fear of wasting my money.

Go sign up! I make very little money, but you can make a fair amount (not a HUGE amount) and still qualify for these programs.

what gives?

I'm nearing my second day of the steroids. Granted, I took my first set of pills last evening around 8:30, so really the first and second days' worth of 'roids have only been in my system for a little over 24 hours. (Gross--did I really just write "'roids"?) But still--what gives!?

There's so much pressure in my sinuses, neck, and head. My neurologist (or rather, the assistant who always calls on his behalf) instructed me to not take any of my regular acute or rescue meds, so I feel screwed right now. It's been years since I've had to suffer through a Migraine attack this long.

I must have become more wimpy over the years, cause I just can't take it anymore. In high school and college (especially college), I pretty much went triptan-free. (I was diagnosed and given Imitrex when I was 21, about to start my senior year at college.) Before the diagnosis, I would have to muddle through the pain and side effects for up to days at a time. Now I can't let one go one for long before reaching for my emergency kit. Perhaps having an official name for my disease made it more real for me--I realized I wasn't just nursing a recurring, frustrating headache--instead, I was treating symptoms of a serious, life-altering disease.

This afternoon my beau and his friend dropped by for a bit, and I had a good hour or so of feeling okay--no major pains, but still a general sense of uneasiness and weakness. I made sandwiches and cut up fruit for dinner, but that seemed to be the last straw--as soon as I took my last bite, I was ready to lie down again despite my utter boredom with my bedroom at this point. A few hours later, I reemerged from my room for a warm bath. Using this pain-relieving ointment I got recently on my neck and upper back proved to feel amazing when combined with the warm bath water--I felt as if my neck was both chilled and warm at the same time as the hot water splashed on the ointment. It felt goooood. But the respite the bath allowed me was brief, and I got up and tried to do a couple of things before feeling bad again. Had a nice conversation on the phone with one of my best friends, but the last ten minutes or so became a struggle as I tried to sound chipper despite my head's throbbing.

I'm not sleepy. I've been sleeping so much. Sitting up hurts; lying down hurts. I can't take medication other than the steroids I'm on for three more days or the daily meds I pop. No Imitrex. No Maxalt. No mind-numbing Lortab.

When will this kick in? Am I continuing to get new Migraine attacks because of stress and the omnipresent Georgia pollen, or is this the same Migraine continuing its awful journey?

I guess I'll try to convince myself I'm tired again. The last few nights I've fallen asleep listening to guided visualization tapes and/or NPR podcasts (This American Life, Radio Lab, and Selected Shorts are my favorites).

Goodnight.

herbal supplements, prescription assistance, etc.

Here's something I wrote in response to a query on a new health community site I love, http://www.wegohealth.com/
It's about the herbal supplements I've heard of as being TRULY helpful for Migraine, not just recommended by some person you ran into one time at the supermarket. Of course they're not helpful for all people, but it's worth a try!

************

My neurologist (who's pretty prominent) as well as many other acquaintances' doctors recommend a few different vitamins, minerals, and herbal supplements for migraine care.

1. Petadolex (a mixture of butterbur, B2, and perhaps one other thing--I forget what) is a daily supplement you take to help diminish the number of attacks and lessen the pain and side effects that accompany the attacks you do have. (http://www.migraineaid.com/) I buy mine through a shop on Amazon because it's cheaper there than anywhere else I've found.

2. Vitamin B2, about 400 mg/day. (This is approx. 23,000 the RDA--but that's the amount they recommend! Gives you wonderful energy.)

3. Magnesium, 500mg/day

Chamomile, mint, and feverfew are also frequently recommended.

As far as the expensive triptans go:

My doctor tells me that Imitrex will be going generic "later this year." Great news! I don't know the specific date. And look here to see if you qualify for prescription assistance programs--even if you have insurance you might be a candidate for one of the many programs offered! https://www.pparx.org/Intro.php

I can't recommend this program enough, and I've only heard back from one company so far! (Waiting for my doctor to sign the forms so I can start getting cheap to FREE meds!)

Take care, and good luck!

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!

I can't make it--I have a migraine.

I cancel plans. I cancel plans a lot. One of my least favorite things about having migraine disease is my need for lots of quiet alone time, even if I don't want it. I love being social; I love spending time with friends, going to shows, grabbing a beer, or sitting around having craft night. But the migraines often get me down.

Sometimes I just don't commit to something I would love to attend. That late-night party down the street, the one that's sure to be fun and full of dancing and friends? "Maybe--if I don't feel bad." The movie I've been wanting to see is playing the night before my period is to arrive--most likely I'll have a migraine then, so going to a movie is just ruled out before I even consider making plans.

Other times, I bail in fear of a migraine. Big events like weddings, funerals, holidays, and other much-anticipated events are almost sure to be accompanied by an attack. A couple of years ago, I got an invitation to a good friend's wedding. I took some factors into consideration: 1, most weddings entail my pretending to have fun and socialize when really I have throbbing pain behind my eyes; 2, going to an old friend's wedding doesn't guarantee you'll actually get to talk to that person; 3, The venue was nearly two hours from my home--and I didn't have the inclination or money to spend the night in the same town as the wedding--that means I would have a long drive there and back--more triggers.

Out of fear, I wrote a sweet note to my friend and declined the invitation. Turns out she was hurt and disappointed--she'd really wanted me there; I was one of the first friends she'd met as a seventh grader in a new town. So I went. And I had fun. And I got a migraine on the way home.

Mostly I cancel plans at the last minute when I have an attack coming on. Even if the meds I take do work, the postdrome means I'll be sleepy and out of it and not in the mood to socialize. A few years ago, I'd pop Imitrex or Relpax while at a busy rock show at midnight, sure the headache would be gone in a few minutes so I could continue dancing and rocking out. I was usually right in my judgment then and ended up back up to par an hour or so later, ready to continue to the night. I don't feel that way anymore. Now I skip out when I feel the migraine coming on and head straight home, realizing that if I push myself I'll feel worse.

Canceling plans makes me feel terrible; my guilt merely compounds the pain and nausea I'm feeling, and that simply doesn't help anyone, the friends I've canceled on or myself. My friends and family are extremely understanding: they know of my health condition and their first priority (and usually mine) is to take care of me. But I still cannot get over the feeling that maybe, just maybe, they think I'm flaky. That I've let them down. That I can't be counted on. And I can't seem to figure out how to get over that.

I read others' blogs, read mantras about taking care of myself, read stories about people going through similar things. Maybe one day soon all that will click. Logically, I know the the choice I make to go home and try to relax is the only healthy choice I can make. Emotionally, I continue to feel like I'm undependable, and that feels pretty rotten.

No more Mr. Nice Girl

As some of you may know, I had a checkup at my neurologist's office early Monday morning. In a post a couple weeks back, I showed you the letter I wrote to him requesting that he be the only person I see during my visit. I suppose I shouldn't have been surprised to receive a call from his assistant/receptionist person and not him. She started out the voicemail all wrong, calling me by the wrong name (the name she chose, and quickly corrected, is one I really dislike--though it sounds a lot like my first name, it drives me NUTS when people call me it; in seventh grade I won the most prestigious award in school and the principal announced this name instead of my own--ew!). She had a message from Dr. _____ himself for me (if they talked about it, why couldn't he have called me himself): he wanted me to know that he takes the time to see every single patient at each visit but that it's just not possible to guarantee that I'd have my visit with only him. The point that he visits with every single patient was reiterated twice. (Um, shouldn't a doctor see his patient? Am I to feel honored that he bothers with a personal visit at all?)

I was not impressed with the outcome.

On Monday morning, I showed up on time for my appointment, having commuted the night before. (I slept at a friend's house in the big city so I could be ready and rarin' to go in the a.m.) I asked told the never-smiling-yet-never-exactly-rude receptionist (NOT the one who called me, mind you) that I requested to visit with just Dr. _____, even if it meant waiting a little longer for the appointment to start. She was, to put it mildly, unhelpful. "There's probably no way that can happen," she began unapologetically. "That's just not how it works. We have to follow protocol, and there's no way to know in advance who's going to be free to take you back for your initial consult."

"I understand that. I did write a letter requesting this, though, and--"
(Interrupting): "That's just not how it works. It doesn't matter if you write a letter or call or ask now, you just go back with whoever's free." Interrupting. Unsmiling. Unhelpful.

I retreated tearfully to the fluorescently-lit waiting room, adding one last deflated, "I get it, but for the record, that's my request." I lost.

Moments later, my Least Favorite Nurse Practitioner emerged. She's the entire reason I ever began requesting neurologist-only visits; though my request was only granted once in a few years, I did have the good fortune of having a better NP take me back for the initial consult during my last several visits. To my relief, she called back the only other patient waiting with me. A moment later, that patient reemerged and she said, "I'm sorry--I meant to call you, ____. I haven't had my coffee this morning." "Neither have I, no problem," I said, hoping that for once we had established some kind of friendly banter.

We walked into the room in which the patient sits and answers questions using the frustratingly simplistic Likert scale questionnaire. The shades on the windows, which cover an entire wall, were all drawn. The overhead fluorescent light was only feet above me, ready to start an attack. "Do you mind if we dim the lights a little?" I asked in what I heard as a pleasant voice. Nearly every doctor or professor or any other person with lights like this I have seen in the last few years has been more than accommodating when I make this request--surely someone who specializes in migraine treatment would understand, eh?

Wrong.

"Um...we could, but I wouldn't be able to see," she said. I am not one to assume folks are talking down to me; in fact, when I find out that someone isn't a big fan of mine I tend to be pretty shocked. Therefore I do not think I was imagining the slight touch of patronization in her tone. (Duh! Darkness means you can't see! Why didn't I think of that? I guess I was foolish to believe that she could open the blinds and let the sunlight come in. I'm so dumb.)

Cue the teary eyes again. I knew this wasn't going to go my way.

She asked me the open-ended question, "How have your migraines been?" but only listened for the first couple seconds. She had opened my file and was reading the letter I'd written to the doctor, the letter in which I requested I not be seen by the likes of her. Great. She zoned out while I talked about my condition. This was probably extraordinarily productive, and it certainly made me feel as if she cared. Ha.

We began the classic "On a scale of zero through three, how bad have your headaches been? How many days have you missed work? How many social events have you missed?" routine. Any time (seriously--ANY time) I tried to clarify my answer ("Well, that's a 2, but only if I've had alcohol the night before..."), she looked at me or the computer screen blankly, finger hovering over the mouse button, waiting for me to end. Every time I was finishing my explanation she'd cut me off with, "Okay," and then launch into the next question. GRRRRR!!!!

The visit with the neuro. was okay. The NP had updated him on my answers, my weight, and all that jazz, so he just had some questions about how well I was tolerating the Petadolex and wondered if I wanted to try Imitrex. "You've never been on that, right?" he asked, repeating the question she'd asked me. "Uh, yes. For three years or more." "Oh." Thanks for reading my file before my visit. (Granted, this error in forgetfulness would have been excusable had I not had the buildup of frustration already.) He slapped his legs lightly with the palms of his hands, indicating he was about to stand up and walk out. "Oh, I do have a long list of questions for you." Boom. There I go taking the visit into my own hands. Go me! Except it didn't feel good, or victorious, or especially helpful. I felt beaten down and rushed despite his understanding smile and pretty good answers.

I think it's time for a new doctor.

Thanks for bearing with me.