Single migraineur finds her match!

I see my natural state as single. I am comfortable on my own and am fiercely independent--at times, this is a hindrance, as it's hard for me to ask for help (and hard for me to accept it). I've met guys over the years whom I've liked spending time with now and again, but no one seemed worth all the extra effort. Don't get all huffy on me, imaginary audience full of all the guys I've ever dated: I don't mean you weren't worth it. I just mean that our connection wasn't strong enough to merit my carving out a niche for you in my busy life. A life that was (and is) full of friends, family, spending time on my own, and spending time with my Migraine disease.

The year before I was diagnosed with Migraine disease, I sat on a swing in a park with my then-boyfriend. A Migraine headache had been creeping its way into my head for the last hours and had finally made its nest behind my left eye, as usual. I described the pain to him as best I could, explaining that only a dark room and a nap had ever made me feel any better. How the two doctors I'd gone to had said that if Excedrin worked once in awhile, I should try to stick with that, that it sounded like I just had a bad headache. How the prospect of having to return to work in thirty minutes to conduct a meeting for a large group of rambunctious, gabbing teenagers in a room lit only in fluorescents was one of the last places on earth I could imagine finding any respite. In retrospect, the way I described my headache to him then sounded as if I was reading off a list of classic Migraine signs, signs it's amazing my doctors hadn't read. He was sweet and sympathetic but not empathetic--athletic and robust, he often talked of never having had a headache or a sick day.

Fast forward two years. I'm in Europe visiting a "dating friend" about a year after having been diagnosed, a year after having been prescribed what was then my lifesaver: Imitrex. I carried the pills in their blister packs around with me in a fold-over plastic sandwich bag. Maybe my headache frequency back then was such that bringing two or three pills for a two week trip seemed like plenty.

It wasn't.

It was around three in the morning and I was down to one pill. I believe we were in some German town at one of his friend's places, but I can't be sure now--many of us were camped out all over the place, including three or four of us in the carpeted bathroom. The party was still going on in the living room, bass pumping, people taking shots and laughing, and no one showing any signs of slowing down. These were the days before I started carrying around earplugs, not that they would've helped much here. My Migraine headache was in its worst stage, throbbing incessantly--tears seeped out of my eyes involuntarily, and when a search for my last pill came up dry, I began to sob in pain, wanting nothing more than to be in my own bed back home, not on some stranger's bathroom floor. My sometime-beau was very sweet and supportive and helped me find the Imitrex, and I guzzled it down with handfuls of water I drew from the bathtub, which was just inches to my left. He was kind and helpful and always had a listening ear to lend, but he didn't get it.

Now it's 2008, and I've been with the same person for nearly two years. This is, as I've hinted, rather unlike me. I believe that a lot of my reluctance to depend on others and to ask them for help stems from the huge, mixed-up bucket of emotions I have regarding my Migraine disease. I want to spread the word and make sure people are aware of its prevalence, and one key way I can do this is to tell my story. On the other hand, telling my story means talking about myself, and talking about myself makes me feel like I'm complaining about my illness. The moment I write that, I want to respond to myself by saying, "Self, Migraine disease sucks! It's okay to complain! You should allow yourself some time to vent!" But the softer voice inside me says, "Now, now. You know lots of people are worse off than you are."

Hmmph.

Let's get back to the boy, shall we? It took me several months to ask him to do the most simple things. I'd heave two huge bags of trash out to the curb and refuse his offers to help. Why? Because I'm fine on my own! I can do it on my own, thank you very much! I wanted to be seen as competent. I wanted him to see me as kind, efficient, thorough, independent, and capable. If I were to ask for his help or (more shockingly) accept his help were he to offer it, he wouldn't see me as those things anymore, right?

WRONG. I can be all of those things and still lean on him for support. And boy, oh boy, do I. Though we have come to support one another in almost every arena, our health is something that comes up frequently. You see, my friends, he is a long-time chronic Migraineur. He, as they say, knows where I'm coming from. He talks me down from crying jags during my headaches, pointing out calmly and lovingly that crying hard tends to make my head pain worse, so how about I stop and try to drink some herbal tea or water instead? He brings me tiger balm and rubs it on my forehead and temples when I'm too dizzy to get out of bed. If in the middle of the night or in the early morning I'm awakened with a Migraine, he gets me a fresh glass of water and my Relpax. He makes sure to ask after me frequently (but not to the point of annoyance-ha!) and spends hours listening to me talk about my medicines, my massage therapy, my neurologist, the cost of prescription drugs, and even this blog.

I can't convince him to see a doctor and get any triptans for himself, as he's a staunch believer in refraining from using pills if possible. I won't go into his philosophy here, but he sits through a Migraine attack and sweats it out despite its agony--the one time he did have a Relpax sample, the headache went away but he felt queasy and strange afterward. He said he prefers going through the usual routine: the feverish feeling, the sweats, the silk eye patch, the long, dreamless nap. To each his own, I suppose. I'll be there to rub tiger balm on his temples and forehead and to be there when he wakes up to give him tea and water.

It helps so much to have someone to talk to, someone to understand. And I do realize how lucky I am to have found that person in a partner. Happy love month--enjoy your friends, your family, and your significant others if you choose to have them!

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!

fluorescent photophobia

I really should be getting out to meet my friends now, but I'm on a Migraine research roll and keep finding new tidbits of information!

Whether or not you know someone who's easily affected by the omnipresent flickering of fluorescent bulbs, this website and newsbrief should be mandatory reading for all people--certainly for all Migraineurs.

I signed the petition electronically but wished I had a pen I could bare down on with all my strength and fervor.

food trigger website

Most of us Migraineurs have an understanding, whether obvious or innate, that any potential food triggers affect each of us in different ways at different times. That being said, I've often looked to this website when I've had an impossible-to-explain Migraine attack. Once in a while, I'll see a common food or drink listed on the site, one that is a trigger for many Migraineurs, and realize I've consumed it in the last 72 hours after never having had it before (or never having had it in such quantity).

Perhaps it will be of use to you, too.

I sincerely hope the last few hours of 2007 treat you all well.

It's a Carnival!

Listen up, everyone! Diana Lee from SomebodyHealMe invited me and several other Migraine bloggers to participate in a blog carnival. Unfamiliar with this concept until her initial email, I was happy to be a part of it despite my omnipresent tendency to procrastinate.

The following is something she wrote to let readers know a little about the blog carnival. I see no reason to make any amendments, so I shall post it in its entirety here.Follow the link ("Surviving the Holidays....") to read several bloggers' words about keeping up good health over the hectic holiday season.

Thanks, Diana!

Surviving the Holidays: Headache & Migraine Disease Blog Carnival

The holiday season can be a fun time of year filled with high expectations, special events, family and friends and lots of great food. But it is also a minefield for headache and migraine sufferers. The first edition of the Headache & Migraine Disease Carnival is filled with commiseration and ideas to help you cope.

Merry Migraine!

Holiday parties are coming. Strike that--holiday parties are here. And it's only the first full weekend of December. Friday night there were two parties, and I had a slight Migraine headache before we even got to the first get-together, which started at five or so. A funny thing happened at the first gathering: I hung out with professors from the graduate program I finished a while back and did a lot of the obligatory catch-up talk. Somehow I had the energy to do this, putting my headache on the back burner while I laughed and talked with old classmates and teachers. The moment my boyfriend and I left the house and walked to my car, the pulsating pressure returned to my temples and the left side of my forehead. While most of the pain was gone (I'd taken my Relpax before the party), I didn't feel ready for the night ahead.

Instead of looking forward to the next party, I merely felt overwhelmed by the social commitments that lay ahead. As we drove toward the next party, I thought to myself, "I'm only 25% done with this weekend's parties. And I've barely scratched the surface of all the December obligations!" My head pounded more insistently. I thought about driving the car home and just staying there.

I trucked on, though. And the Migraine came back full-force the next morning. And the morning after that. (Granted, I'd had a few drinks Friday and Saturday nights, but the drinks were vodka and I drank in moderation. Usually clear alcohol + water consumption + not overdoing it = no Migraine!)

The holiday season doesn't seem like it should be particularly stressful for me--I have a laid-back family and no one obsesses over gift-giving or party-throwing or keeping with meticulous customs. But I tend to get pretty headachey each year anyway. Why is that?

Paying for medication is extra-stressful when I want to spend my money on plane tickets to visit loved ones or gifts for friends and family (or myself, dammit!). But extra headaches mean extra calls to the pharmacy. More $120 charges for Relpax, here we come! Another $135 neurologist appointment is coming up, as is more monthly medication.

But let's look on the bright side. The holiday season doesn't have to mean focusing on others, what they want, parties they're throwing, commitments we're expected to fulfill, etc. What is it we're told over and over again? Oh yes--the season is about giving. Let's learn from this.

1. Give to yourself.

If you're not up for a party, don't go. Pushing yourself could mean you make yourself sick. Maybe it won't, but why risk it? You are THE most important thing in your life. (Or one of the most important, if you have others you're very close to!) Take care of yourself. Don't stretch yourself too thin.

Maybe you could pamper yourself a little bit. Have you ever had a massage? Oh, I highly recommend this. A tip for you: be sure to tell the massage therapist about your Migraine patterns and any spots on your body (esp. back or neck) that when tight and in pain might be triggers. An experienced masseur will know how to treat you. My massage therapist is a TMJ specialist and dons some latex gloves so she can massage way back in my cheeks, relieving my TMJ like you wouldn't believe.

2. Expect that others will be there for you, too. 'Cause they will!
Your friends want you to be well. I'm guessing that they're aware of your Migraine disease (or whatever chronic pain disorder you might have). If you need to bow out of get-togethers, if you're overwhelmed and need to leave a party early, or if (as in my case), if you can't afford to get as many Christmas gifts as you'd like because your "extra" money goes to prescription drugs, that's okay! And your friends will understand. That's why they're your friends. Trust that they'll be there for you.


Merry Christmas to me! I guess I'm buying myself some drugs.
I wish you all well.

*If all goes as planned, this will be part of the HeadacheBlogCarnival. Link to follow.

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?