green snot alert

Gross title, I know. But apt if you were to step into my life this very day.

I've had a cough/cold/stuffy head for over two weeks now. We all know I get angry about my own (and others'!) lack of health insurance, but at times like this that anger really flares up. I am confident that this is a cold. I am not being helped much by over-the-counter medicines and, now that the cold seems to be morphing into a sinus infection, I feel that I may soon want a doctor's help/antibiotic prescription. But I won't go to the doctor for this. First off, I don't have a general practitioner anymore. Used to have one but, as per UGA policy, I can't go see her now that I'm not affiliated with the university. Alumni not welcome. Wah. Never bothered getting another GP because, well--I had no insurance and no inclination to drop a few hundred bucks to see a doctor just so I could establish a relationship with him/her.

So now I'm green-snotted and stuffy-headed. Sinus infections can be extra obnoxious for us migraineurs, as we're oft used to having stuffy heads related to migraine attacks. Stuffy heads can lead to migraines or be a side effect of certain stages of migraine. I don't want my stuffed self to turn into stuffed-and-migrainey self. So far so good, but still.

I'm so mad that I can't call up a friendly doctor and say, "Hey there, this is your patient, Janet! What's going on? Listen, I'm feeling icky and think I might have a sinus infection. Could you be old-fashioned-doc for a sec and call in a prescription for me? Oh, you can't? That's okay--how about I make a drop-in visit to your office this afternoon. Cool? Cool."

Last time I made a doctor's appointment I was told it'd be over TWO MONTHS 'til I could get in to see the doctor. That two months is almost up--I have my appointment with this guy in mid-December. Many an Athenian has told me he can work wonders with migraineurs, focusing on lifestyle changes. I love a good holistic doctor who's not a quack--this guy is supposedly the real deal. I'll drop a couple hundred with fingers crossed and get back to you. It's gotta beat the rude service and hyper-prescribing tactics I ended up encountering at my neurologist's office.

Scratch that: EX-neurologist. I think I may have forgotten to mention that I dumped him a month or two ago. Yay, me! I gave him and his office a chance to keep me, but they didn't seem to give a crap. Alas.

Anywho. The 15+ day cold isn't much aggravating my head, though a big cough can certainly give me a burst of mild head pain. Ick.

I'm off to blow my nose. Jealous?

When meds make you lose your mind

To everyone who's ever felt out of it or stupid while taking a brain-altering drug: this short but poignant New York Times article by Judith Warner is wonderful! I responded to the article with this long letter (which initially started as a short comment). Links throughout lead you to relevant blog entries.

Dear Judith,

I confided in a friend a few weeks back about how stupid and out of it I felt while on my preventive drug (Zonegran) for around 1.5 years. He forwarded me this article this morning--I'm so glad it was published in such a large forum!

I joked a lot about the potential side effects ("difficulty word-finding," "cognitive impairment") when I first started popping Zonegran, but I never thought I'd actually be one of the patients affected. My cognitive impairment didn't kick in until a few months into drug treatment--and the patient leaflet said that all the cognitive side effects are usually here and gone after the first six weeks of treatment. I decided I was just getting stupid. For the first time, I wasn't in school or doing academic reading. I couldn't work a 9-5 job because of my migraine attacks. Maybe I just lost my brain.

Madge (commenter above), it seems you're admonishing Judith for not having said something sooner to her doctor or pharmacist. It seems to me that Judith took action pretty quickly. As for me, I was embarrassed about the side effects and not even sure if they were side effects from Zonegran--maybe they were just side effects of life, the new and not-so-improved Janet. I'd always prided myself on my writing and thinking ability and suddenly that was disappearing. This phenomenon is so strange, so unfamiliar, and so hard to pinpoint that it's not easy to see that it's connected to a drug you started months ago. I didn't say anything to my doctor or pharmacist about it until months later.

Someone named "cla" commented before me about how busy doctors are today, how perhaps we patients should adjust our expectations instead of expecting doctors to be at our beck and call (I'm paraphrasing here--hope I've not taken any liberties, cla). This is b.s.! I KNOW that doctors are overwhelmed with insurance claims, paperwork, bureaucracy, and five visits a day from drug company peddlers who overwhelm them with ads and sample medications. I think that cognitive side effects should be treated as seriously as physical side effects, that doctors should be honest and up front with patients. Migraine disease is so much more than a series of episodes (which may or may not involve a headache)--it's a disorder that affects your ability to function, your ability to have a so-called "normal" life, your ability to enjoy what you have without being worried about the next attack. If doctors are focused entirely on how the body is affected (if they're focused on that at all and not distracted by their bureaucratic duties) and not focused on how the patient and her life are altered due to the disease (or drugs given to treat the disease), those doctors need some lessons in patient-doctor communication. They need to learn more about migraine's ins and outs and realize that, just because the clinical trials didn't reveal a prevalence of a certain side effect, LOTS of people are losing their minds, their selves, while on certain prescription meds.

After over a year and a half on Zonegran, I finally weaned myself off (with doctor's straightforward assistance and little care as to why). I still don't feel as smart as I used to. I still have trouble finding the words that used to come so easily to me--but I have to have the faith that this will come back to me. That I've taken brain-altering drugs and it might just take awhile for the firing synapses to resume their old speed.

In closing, thanks for this article. Thank you so much.

MIgraines & aspartame

Before my own Migraine disease kicked in, I recall my mother's intolerance of aspartame (NutraSweet)--she realized after some trial and error that she got an awful headache whenever she had this sugar substitute. I kept on chewing sugar-free gum happily, not necessarily enjoying the hyper-sweet, chemical taste of the additive but not feeling sick because of it.

Cue the Migraine disease onset in 8th or 9th grade. Soon I became unable to have even a small dose of aspartame. Once, my senior year of college, I was doing classroom observation for my education minor and accepted a HALF a stick of sugarless gum. (The guy offering it was the teacher, a man a couple years older than me whom I found rather cute. Note to self and others: do not experiment with even a tiny bit of Migraine-triggering substance just to flirt with a boy! He'll end up being weird and creepy and not calling when he says he will.) Within an hour of popping the gum in my mouth (which I masticated for approximately fifteen minutes, I'll have you know), I got an aspartame-induced Migraine attack, first one triggered by the substance in well over a year.

My sensitivity to the stuff probably changes day to day, as is the case with most Migraine triggers. If I have a bunch of triggers happening all at once (stress, altitude changes, shifts in barometric pressure) and THEN I have some sugar-free gum, I'll probably get a severe headache. If I am feeling good, not feeling stressed, and the weather is flat in my low-altitude home state of Georgia, a stick of the gum might not effect me so severely. Dig it?

I'm really displeased with this article Google Reader just found for me. The FDA refutes all connection between aspartame and Migraine headaches. The article uses the incorrect Migraine terminology throughout, saying that some patients claim that aspartame causes Migraine--we here all know the key word should be "triggers" and not "causes."

Having a well-respected (ahem) governing body like the FDA purport that the connection between the substance and the disease is all in sufferers' head just leaves a bad taste in my mouth. Let me admit first that I am one part statistician (one very small part, but still) and do believe that, if at all possible, treatments should be thoroughly evaluated for safety and efficacy using a well-run, randomized study--double-blind and large, if applicable. I do think that you can't put 100% of your trust in people's anecdotal reports, especially if you're going to publish your findings in an official manner.

But.

But.

There's a LOT to be said for what patients experience that cannot be (or at least has not yet been) measured in a statistically sound trial. It drives me crazy to go to my neurologist and get up the guts to tell him about some weird reaction I think I might be having to one of the medications I'm on; it's even harder to tell his stone-faced nurse practitioner that I have weird side effects during my Migraine attacks. They seem to not believe me unless the same reaction/side effect has been discovered by one of the Big Pharma-sponsored studies. And this makes me angry. Very angry.

The aspartame-triggering-Migraine-attacks phenomenon is NOT a myth. We migraineurs are not banding together to bring down the NutraSweet company. The fact that I feel feverish despite my temperature being steady during certain phases of a Migraine attack is indisputable--but, oh wait! My doctor has never heard of that. I must be making this up.

We need to be cautious telling one another that something is a be-all, end-all cure--or a be-all, end-all, vicious trigger, for that matter. But we migraineurs' strength often lies in our grassroots effort to communicate with one another after having stepped away from the doctors' offices and pharmaceutical-company-sponsored "informative" sites. We have to open up the conversation about our disease, our pain, and what we perceive as truth. There's something afoot with the aspartame issue, and I will not lie down and pretend that I have been making up this association all along.

congested congestion never ends

I have felt congested for, I don't know, a few MONTHS now? I chalked it up at first to Georgia weather, but this has gotten out of control. Quite often my entire head, from the skin on the back of it to my nose to the sinus cavities under my cheekbones (uh, there are sinus cavities there, right?) has been stuffy. Yes, experts, I realize that the diagnosis of "sinus headache" is not accurate and that it's usually Migraine at work (this is touched upon here). Yes, I realize that sinus congestion can be a precursor or side effect of a Migraine attack. But all the time? Really? Even when I'm not in the midst of a Migraine episode?

Perhaps this is tied to the incessant tiredness I've been dealing with. In the last couple weeks, I've gotten so tired I've succumbed to the desire to take a nap for 30-120 minutes. When I awake, I feel groggy at first but then have energy again. Imagine that--energy!

Here's what I'm thinking. I need to make more money. I need to make more money so I can see a doctor who actually practices in my town. I need to talk to a doctor whose staff doesn't feel like I'm bothering them. I need to figure out what's going on with my body as a whole, but I have to get over my hesitation when it comes to holistic healing. Okay, let's clarify: holistic treatment is one of the only methods that makes sense. Of course you have to look at the entire body in order to figure out what's happening to make you function under par. But so many holistic healers I've come across--mainly on the web or in accidental late night conversations at music shows--are a bit kooky. The daughter of two die-hard skeptics (not to mention I'm a skeptical little squirrel myself), it's difficult for me to swallow the talk they deliver, the talk that smacks of New Age (e.g., millenia-old) wisdom. What to do?

For now I can't do anything anyway. Ain't no dispensible income to speak of, so I'll just sit tight. Bright news at the moment? My stuffiness is only 15% present at the moment. And yes, that's an official calculation.

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!

a sudden cloudy feeling; relief

When I awoke this morning, I heard rain outside my window. Great. This is the day each week I do my traveling-and-loading-and-carrying-indoors-and-out job, and doing all that in the rain didn't sound like the most amazing situation. Rainy days have been triggering fewer migraines for me of late, and I was happy to notice that this pattern seemed to be continuing: upon waking and hearing the rain, my first thought was, "Oh no! Headache day?" Sitting up and having a sip of water or three with my morning Petadolex rid me of my fear--no headache, not even the dull, stubborn, moderate pain that was affecting my neck and head as I tried to sleep.

The ever-helpful beau traveled with me today to deliver food boxes. (One of my gigs involves delivering food to kids in need every Friday, food that will allow them enough snacks and meals to last them all weekend until the school week begins again.) The migraine didn't attack until we were all done and sitting in a Peruvian restaurant having chips, salsa, black bean soup, and tacos. Unlike the majority of episodes I've had in the last several months, this one escalated rapidly--I was unable to tolerate the noise of the kids two tables away all of a sudden, when just twenty minutes before I hadn't much noticed their babbling and yelping.

"I have to get out of here," I must have said five separate times. The waiter seemed to be moving in slow motion. Would it be better to go outside to the car for my meds or just wait until we'd paid the check? Should I cover my ears to block out those whining kids or should I lean back and rub that space between my thumb and forefinger that seems to dull my head pain?

I placed a dissolving Maxalt tablet on my tongue, expecting quick relief.
Two hours later, I lay in my bed and had a Naprosyn sodium tablet and another Maxalt.
Fifty minutes later, I decided to grab my laptop and see if I'd missed any important emails while working or lying down. I put the laptop on the bed, half-lay next to it, and suddenly felt this refreshing cool, cloudy feeling rise from my chest all the way to the space behind my eyes. Waves of this cool fog came through my body over and over, even more intensely as I bothered to take note of them.

It's been a while since I last was awake and fully conscious during the sudden relief of a headache. My trusty Relpax slowly began to be less and less effective, so I usually ended up falling asleep until a couple hours later, waking to find I was no longer in pain.

This time I was aware. Awake. Grateful.

That doesn't mean I'm not going to sneak in a nap for an hour or so. Goodnight.

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.

I have a doctor's appointment, not an assistant's appointment.

Today I wrote a letter to my neurologist. For posterity's sake, I thought I'd include it here. I'm hoping he responds the way I'd like him to.

February 16, 2008

Dear Dr. _________,

On March ____ I have an ___ appointment with you. Each time I go to your office, I request to meet with you and only you, even if it means waiting a longer time to be seen. My request is granted less than half the time. To my frustration, my request seems not to be taken seriously, as more often than not I find a nurse practitioner at the door to greet me. I realize that your staff is incredibly knowledgeable and often very helpful, but I am not paying to see them. I am paying to see you.

You may recall that I’ve been paying out of pocket for my medical expenses for a couple of years now; the drive from _______ plus the expensive visit is only worth it to me if I am to meet with just you.

For my upcoming visit, I request that this be the case. If it turns out I meet with a nurse practitioner or other doctor for most of the visit and just see you for the remaining few minutes, I will probably start looking for a neurologist closer to my home.

Thanks so much for your time and continued support.

Sincerely,

____________

great news from the Migraine Research Foundation!

Someone who's been reading my blog has been kind enough to forward me the following article. She herself is very involved with the Migraine Research Foundation, her parents being the founders.

Please read on and SPREAD THE WORD! Thanks.

MIGRAINE RESEARCH FOUNDATION LAUNCHES WITH ANNOUNCEMENT OF FIRST ANNUAL RESEARCH GRANTS

FOUNDATION FUNDING RESEARCH TO END DEBILITATING

PAIN OF MIGRAINE SUFFERED BY MILLIONS

New York, NY – More than 30 million Americans suffer from migraine, yet research into the causes of migraine is both severely underfunded and neglected. Today, the Migraine Research Foundation officially launched its efforts to address the lack of research in this field by announcing the first annual research grants awarded by the Foundation. The Foundation is awarding nearly $200,000 in grants for 2007 and plans to more than double the grant amounts to at least $500,000 in 2008.

Founded by Stephen Semlitz and Cathy Glaser, whose family has struggled with the devastating effects of migraine for many years, the Migraine Research Foundation is dedicated to funding research that will end the debilitating pain of migraine that afflicts millions of men, women and children.

“Our family was surprised to find out that research efforts into migraine were enormously lacking,” said Ms. Glaser. “After talking with many doctors and migraine sufferers, it became clear that my husband and I could make a real difference in the lives of millions of people by supporting scientific research into the causes of migraine. That is why we founded the Migraine Research Foundation, which we foresee growing into the largest private funder of migraine research in the United States.”

Every 10 seconds, someone in the United States goes to the emergency room with a headache or migraine. American employers lose more than $13 billion each year as a result of 113 million lost work days due to headache or migraine. The lack of research into migraine is astonishing considering the widespread impact and consequences that this devastating condition has on American families and businesses. Over 10% of all Americans, including children, suffer from migraine, and nearly one in four households includes someone with migraine.

Guiding the efforts of the Migraine Research Foundation is a medical advisory board that includes leading neurologists and scientists from across the country and is chaired by Dr. Joel Saper of the Michigan Headache & Neurological Institute in Ann Arbor, Michigan.

“Migraine is underresearched by the scientific community, undertreated by physicians, and underappreciated by society,” said Dr. Saper. “There is no condition of such magnitude - yet so shrouded in myth, misinformation, and mistreatment - as migraine. The Migraine Research Foundation is about more than just the research that it will fund directly – it is about stimulating others to join us in addressing a critical gap in medical research.”

In addition to Dr. Saper, the medical advisory board of the Migraine Research Foundation includes Dr. Rami Burstein (Harvard University), Dr. F. Michael Cutrer (Mayo Clinic, Rochester, MN), Dr. David W. Dodick (Mayo Clinic, Scottsdale, AZ), Dr. Peter J. Goadsby (University of California – San Francisco), Dr. Richard Lipton (Albert Einstein College of Medicine, Bronx, NY), and Dr. Stephen D. Silberstein (Jefferson University Hospital, Philadelphia, PA).

The Foundation’s first round of annual research grants, totaling nearly $200,000, has been awarded to four researchers whose work holds the promise of groundbreaking advances in the search for the causes of migraine. The recipients and the research they will be pursuing include:

· Richard Lipton, MD Albert Einstein College of Medicine, Bronx, NY

Towards a Migraine Genetics Population Laboratory: Building on the American Migraine Prevalence and Prevention Study

· Michael Oshinsky, Ph.D., Thomas Jefferson University, Philadelphia, PA

Glial Activation and the Chronification of Headache

· Frank Porreca, Ph.D., University of Arizona, Tucson, AZ

Behavioral Model of Medication Overuse Headache

· Ann Scher, Ph.D., Uniformed Services University, Bethesda, MD

Migraine in Middle Age and Late Life: A Longitudinal Analysis of Factors Related to Migraine Prognosis in a Large Population-Based Cohort

“Today marks the start of a new commitment to supporting scientific research that we hope will lead to understanding the underlying causes of migraine and finding effective treatments for migraine sufferers,” remarked Samuel Yates, Chief Operating Officer of the Migraine Research Foundation. “We eagerly anticipate the results of the work these grants will support, and are optimistic that the research funded by the Foundation will ultimately help improve the quality of life for millions of people.”

The Migraine Research Foundation has already committed to more than doubling the funds available for research grants in 2008 to at least $500,000, with funding coming from the support of an expanding network of individual donors, foundations and corporations. The Foundation also plans annual increases to the total amount of grant awards in subsequent years. Information on applying for 2008 grants will be made available in February 2008.

“Migraine research has lacked for funding and support for far too long. The Migraine Research Foundation is committed to helping research scientists discover the root causes of migraine and determine how to treat them,” said Stephen Semlitz, co-founder of the Foundation and Chairman of the Board. “Millions of families like mine live with the debilitating pain of migraine on a daily basis. Our hope is that eventually, due in part to the efforts we have already begun, everyone who suffers from migraine will have an effective treatment that they can count on to allow them to live a healthy, happy and productive life.”

About the Migraine Research Foundation

The Migraine Research Foundation (formerly The Migraine and Pain Fund) is a nonprofit 501(c)(3) organization dedicated to ending debilitating pain through funding scientific research into the causes and better treatment of migraine. More information about the Foundation and how to contribute to its efforts can be found at www.migraineresearchfoundation.org.

Goodbye, Zonegran/Hello Petadolex!

Guess what, guess what, guess what?! I am officially weaning myself off Zonegran. My neurologist gave me a plan to follow and everything. I started on the drug in April 2006 and quickly worked my way up to 200mg/night. In October of 2006, my neurologist upped it to 300mg/night in the hopes of killing off more Migraine attacks.

It is now January 2008 and, after months of going back and forth about the issue, I've finally started the process of getting off the meds. This marks the second night in a row I'll be taking 200 mg/night instead of 300mg.

Here's the plan.

Up until now: 300mg/night before bed.
Then for two weeks: 200mg/night before bed
For two weeks after that: 100mg/night before bed
And for the two weeks after that?: 100mg every OTHER night before bed

And then I'll be done. Minor snafu? The doc didn't call in enough pills to the pharmacy to get me through all the weeks. I'll run out of pills during the last stage, right when I've almost got it beat. We shall deal with that when the time comes--a quick but annoying call to the neurologist's voicemail will clear that right up.

To complicate and [I sincerely hope!] improve things, I've been prescribed a new treatment, if "prescribe" is the accurate word here. My doctor is requesting (nay, ordering!) that I begin taking a new pill every day, but not one I need his signature for. What is this, you ask? Why, it's a little something called Petadolex. This herbal supplement has virtually no side effects, is relatively inexpensive (especially if you're starting from scratch sans insurance like me!), and is readily available on this here World Wide Web. There are actually verifiable scientific studies in which results show that Migraine frequency and intensity decreased in people using it daily. And my neurologist, one of the foremost experts in the field, is recommending that I take it.

So why didn't my doctor tell me about this long ago?

I fear that the answer lies in the well-founded fear that doctors are getting some pretty big payoffs from Big Pharma in exchange for pushing certain drugs to their patients. (I just stumbled across this article that describes how influential drug reps can be! Frightening.) This doesn't seem entirely true in my case, perhaps, since I was taking the generic form of Zonegran anyway--but I lasted the first four months of my drug therapy without needing one prescription from my local pharmacy. Why? Because my neurologist had tons (TONS!) of free samples to give me. While I was very grateful for this, I also find it off-putting to think of the millions of dollars and labor hours spent in order to get those sample packets into my hand. I fear that the motive isn't just to make me and others like me well. I think it may have to do with handouts, payouts, and some free vacations and dinners to boot. A friend of mine who's a pharmacist just went to a talk given by my aforementioned well-known neurologist--a talk about Topamax. "Why would he do such a think in his free time? You know he's got to be getting paid for it."

And I'm off on a little bit of a tangent. I'm really hoping that there's a good reason why I went through four preventative treatments, all of which had adverse side effects, all of which I told the doctor I was hesitant to go on, before he told me about this side-effect-free alternative therapy. I really hope that the reason has nothing to do with his being money-grubbing, 'cause I like him. I do.

Goodnight, and I hope you're feeling well!

facebook group!

Hi guys,

For those of you out there who don't go looking at all the comments on this here blog, you may not know that there's a facebook group page for the Migraine Research Foundation. Heck, you may not know that the Migraine Research Foundation exists in the first place!

The people in the group have been reading my blog. Maybe I should:

1. Write more, and
2. Go ahead and out myself.

But first I have to call my neurologist. He was supposed to call in a prescription refill for Zonegran yesterday and didn't, so I ended up with some loaner pills from the pharmacist. How kind.

Why am I asking for more Zonegran after all these months of saying I'm going off of it? Well, I have to keep taking it and then slowly wean myself off. As soon as I hit the "publish post" button, I'm calling my neurologist and leaving a message describing why I want to stop the drug, how long I've been on it (though you'd think they could look at the chart and see...?), and how much. That way they can help advise me as to the best way to slowly stop taking it. Yippee!

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!

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."

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.

stories from the moneyless trenches, or, "well, that certainly explains a lot."

For numerous reasons, I just compiled a list of all my out-of-pocket medical expenses for 2006. For the first three-quarters of 2006, mind you. Before I reveal how much of my own cash I've dished out to pay for treatment, over-the-counter medication, and the ridiculously overpriced prescription medication I rely on to function somewhat normally, keep the following tidbits in mind:

1. I have had a health insurance plan all year. True that it switched last month, but I've been covered all year, and total money I've spent, the total I'm set to reveal, does not include health insurance plan costs. My sweet parents helped their then-student daughter with that burden.

2. I have had a health insurance plan all year. But I still pay exorbitant amounts for prescription drugs. That's all I'll say about that.

3. I'm only counting costs of things for which I could find receipts. Those of you who know me well know that I am not the best at holding onto small bits of paper with teensy numbers written on them, so who's to say what I might be forgetting?

4. I don't have a steady source of income. Seeing this number might not seem like much to you, but when you think of how I only work a handful of hours a week and have not even a steady part-time job (let alone a full-time one), it might hit home that this amount of money is what it takes me to make in surprisingly lengthy periods of time. But finally it makes sense to me why I don't have money--it's true that I spend almost everything I have on Migraines. Yay, head! Suck up my money! Yeehaw. (It's true that seeing this grand total, though shocking, is a source of some relief--at least I know that I had money at some point, and that it wasn't all a dream.)

Okay, here we go: $2,625.

*I mean my tone to be matter-of-fact, not whiny.

ten days and counting

I'm used to having a minor headache every morning and evening, but a full-blown Migraine headache each and every day for the last ten days? Give me a break! I called my neurologist a few days ago and asked for even more Relpax--my prescription ran out a bit ago but I keep having to order more to fill in the gap of time until I can go see him for my appointment in four weeks. Usually eighteen pills (three boxes at ungodly prices per box) would last me awhile. The first of the eighteen I asked for a few weeks ago. The most recent batch of six I bought from the pharmacy just three days ago--there are only two left, and I have 32 days until my appointment.

I'm going to have to call and beg for more.

I'm going to have to get the seasons to stop changing so that the weather doesn't aggravate my head.

I'm going to have to get the rain to stop coming and going as it does so that the barometric pressure doesn't wreak havoc on my brain.

I'm going to have to find something to do before I become a drugged-up hermit forever.

getting off the drugs

Last week I was in my cruise ship stateroom, unpacking my toiletries on the first night of vacation, when I realized I had left my Effexor XR bottle at home. My loving friend kept me calm when I wanted to throw a tantrum, a tantrum that would surely lead to (yep!) a Migraine attack. I contemplated not telling my parents about the forgotten medicine, the medicine that's marked with warning after warning about how it's dangerous to miss doses and (god forbid!) stop cold turkey.

I splurged and called my neurologist, wanting to leave a message for the doctor about needing a new prescription faxed in. Unfortunately, you can't leave a message unless you're having an emergency. Great. The next day I talked with a nurse, who scolded me and half-yelled into my pained and Migrainous ear that I was late with my appointment and shouldn't be skipping doses of meds and blah blah blah. I refrained from becoming overly defensive and politely relayed the faxing information and fax machine number on the ship. This was Monday; the fax was to come in that afternoon and I could take the paperwork to a pharmacy the next time we were on land on Wednesday.

The fax never came.
The only time I could have called the neurologist again was when I'd get the answering machine that doesn't accept incoming messages.

I have been off Effexor for 8 days. The withdrawal wasn't too odd at first, but in the last couple of days I've had a pounding heart (ha--thank god for that! what I mean was, my heart is pounding a little more dramatically than usual) and a not-quite-with-it way of walking, talking, and attempting to focus.

What is really comforting is knowing that my doctor will scold me and think me foolish for going off this seriously strong medication.

Okay, I'm being negative and sarcastic.
What IS really comforting (and I don't kid) is knowing that I have garnered the courage to tell the doctor that I want to wean myself off some of the meds and see what can be done with fewer drugs (and fewer dollars). Wish me luck.