a note to those who are considering Zonegran

I was just on MyMigraineConnection.com, perusing articles and looking up information on Zonegran withdrawal symptoms. To my chagrin, there's a general lack of specificity when it comes to lists of withdrawal symptoms. As the drug is prescribed off-label for Migraines (it's an epilepsy treatment), the medical websites all tend to point out that one should exercise caution while weaning off Zonegran due to increased risk of seizure and "other side effects--talk to your doctor."

So far my withdrawal process has been a lot easier than I'd expected. I'm halfway through and am sure my happiness with daily life has a great deal to do with my increased energy (a combination of getting off the energy-zapping Zonegran and getting all that B2 in my vitamins and my Petadolex, as I have mentioned before). Today I really took a turn for the worse, however, and hope hope hope it was just for one day.

Last night I went downtown with friends for a low-key night of chatting and carousing. Around 9:30 I decided to walk home, feeling a headache coming on. It was such a low-grade pain that I figured getting into bed early with a book and some chamomile tea would heal me right up. Boy, was I wrong. A raging Migraine headache took over within an hour of my arrival home. My stomach felt swirly but I was too nauseated to fetch a wastebasket to use as my emergency receptacle should I become sick to my stomach. (Luckily I didn't end up needing this option in the first place.)

This morning I woke up in a foul mood. A gray mood. A gray mood with fiery, jagged edges that caused me to lash out at everything from my boyfriend (who was suffering from a Migraine himself) to the dishes in the sink to the broom to my neglected plants. I. WAS. EXTRAORDINARILY. ANGRY. AND. BITTER. For no known reason. The closest I've come to such unreasonable anger would be in times of PMS, but I just finished my period, and this mood was far more sour and impossible to climb out of than any routine PMS funk.

What was I going through today? I see that agitation and irritability are side effects of Zonegran withdrawal; they can also accompany some people's postdrome stage, though feeling anger at this stage is infrequent for me.

In my rather fruitless search for Zonegran withdrawal symptoms, I did find a few pages on MyMigraineConnection.com on which people solicited the advice of others who may've tried Zonegran--what's our opinion of the drug as a Migraine treatment?

Here's my response. For those of you who read my blog frequently, you'll see nothing new. But it felt good to put it on paper--er, screen.

I have been on Zonegran for 22 months. The frequency, severity, and duration of my Migraine attacks decreased overall, but I still had super-duper Migraine months (especially during hot Augusts or stressful holiday times, for example) and was relying on my acute medication, Relpax, just as much as ever.

For me, the side effects of Zonegran far outweighed the positive. My doctor mentioned the possibility of some side effects, but both he and the drug literature mentioned that the effects would probably go away within 4-6 weeks. This was not the case for me. I lost a LOT of weight and the more bothersome side effects--memory loss, difficulty word-finding, near-constant fatigue, and simply a general feeling of dumbness!--were harder to pin down and took longer to emerge. I thought I was going nuts until I found a whole community of people out there who'd had the same things going on in their brains.

I'm now going through the withdrawal process and will be off Zonegran in three weeks. Petadolex is my new herbal drug of choice, and thus far it's working well!

more Migraine coverage for the WORLD!

Look at this. I'm thrilled that The New York Times is backing such a project. This means that migraine awareness will increase exponentially.

I am not-so-secretly thrilled that my favorite Migraineur-author Paula Kamen, author of All in My Head and JEFF TWEEDY of one of my beloved bands, Wilco, are two of the main contributors! We need not even mention that world-renowned Oliver Sacks is also at the helm--I've read several of his books, Migraine being among them. The fourth writer, Siri Hustvedt, has written a beautifully important first entry that makes me want to read her longer works.

Check it out. Knowledge is power.

February Headache Blog Carnival is Posted!

This month's headache blog carnival is posted. Click here to see it! In the words of organizer Diana Lee, this month's theme is "how to have love and romance in your life when you also have headaches and migraines."

happy days are here again

I don't know to what I owe this good fortune, but I have been feeling really well. Even when I have had a Migraine attack in the past month or so, its effects haven't lingered for days as they usually do. It's a strange and unfamiliar feeling, this sense of health and well being even one day after an attack. Usually I feel groggy and lethargic.

Is it the fact that I'm going off the Zonegran, a happy change I've documented numerous times on this blog? Is it that I'm anticipating a career change (though one marked with lots of stress that's far in the distance anyway)? Is it that I have Petadolex running through my system at all times, the butterbur and the extra B2 doing their work to make me feel well and energetic? As it is, I already take 400mg of B2 a day (that's over 23,000 times the RDA). There are 200mg in each Petadolex pill, so at 3 Petadolex capsules a day that means I'm having 1000mg of B2 each day! That probably has a lot to do with it, eh?

The great thing about Petadolex is that even if it's working due to a placebo effect, it's still making me feel good. And you don't need a prescription to get it, either, which makes me feel more powerful somehow. (No driving three miles late at night to dish out hundreds of bucks for a drug that pharmaceutical companies could make much less expensive if they only chose to.)

This entry is self-serving and rather pointless in most ways, but I would like to preserve it just to have a little snapshot of how great I feel. I wish the same for you.

In other news, this month's headache blog carnival posts in a few hours' time! I'll put a link to it here. (My entry was written last week, but there'll be MANY other people's I'm interested in reading.)

nine day streak!

I went nine days with no serious (i.e., meriting a Relpax) Migraine headache! I had a day last week when I felt a little achey and so drank lots of water and went to bed earlier than usual; I awoke feeling great.

My Migraine that interrupted the streak was a predictable one, the one that almost always accompanies my period. As I mentioned many a post ago, my week-long Migraine attack that used to come along with every single period got nipped in the bud, probably because of a Frova + Naproxen preventive plan I went on for a few months. (It got too expensive to do each month, but my doctor's guess was right: I, like many other women, had the happy circumstance of the drug regimen stopping a many-year-long problem, transforming a 7- or 8-day Migraine into a one - or two-day one.) Anywho. This month's amazing streak was only interrupted by a menstrual Migraine Friday night, and it wasn't a bad one; it took double the Relpax to get rid of it, but the pain was far from unbearable.

Overall, I'm thrilled with the idea of my body soon being free of Zonegran. I was giddy with excitement when picking up my last pills at the pharmacy last week--surely I struck the pharmacists as slightly crazed and goofy. Who cares? I'm going off a mind-altering chemical I've been ingesting for 22 months. Yeehaw!

goodbye Zonegran, hello Petadolex: part 2

Tonight marks the night I'll go down to one 100mg pill of Zonegran a night. Two weeks from now, I'll have a two-week period of having one every other day.

Since early last week or so, I've been taking Petadolex three times a day. The box says it's been used in Europe for over 30 years. Hmmm...

I've not had a Migraine episode in eight days!!! What a glorious streak. Last week I did have two back to back with no obvious triggers--I'm not sure if that was related to my withdrawal or not.

So far the withdrawal process hasn't been too rough. I was thinking I would have some rough side effects. Granted, I have four plus weeks until my body gets used to not having Zonegran screwing with my brain chemistry, so who knows what'll happen next.

Fingers crossed!

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!