my therapeutic yoga class

Okay, jury's in: I love my therapeutic yoga class. I was really overwhelmed after my first session--everyone in the class is amazing in his or her own way, and everyone has at least one (at least!) major health obstacle she's trying to cope with. All those fears about not being flexible enough, about not being able to keep up, about not doing things "correctly," have flown out the window. Slowly but surely I'm taking to heart my experienced yoga teacher's words: if your movements are painful, you're not doing yoga. Everyone's body is completely different from the next, so one person's ability to move in a certain way should not be judged against the next person's. In doing some arm exercises, I pushed myself to keep my arms high despite their beginning to get tingly and painful. After the class, I mentioned the discomfort to my teacher, who told me to lower my arms significantly--if that didn't work, we'd figure out another modification that would perhaps allow me to do this exercise.

Each class is two hours long but is not rigorous or stressful in the least. We move slowly and mindfully, paying attention to our breathing and always taking note of how our movements make our bodies feel. (I speak as if I'm a self-proclaimed guru at this point--this is far from the case, but speaking confidently about the practice sure can't hurt!) It's hard for me to slow my mind down, to not pay attention to the racing thoughts that flit across my brain like so many little birds.

There are two other severe chronic migraineurs in the class, and I completely misjudged how wonderful it'd be to talk with them in person. I've gained so much through web-based relationships on this blog (and in using other health websites), but to see someone's face as she describes her life with migraine is such a different experience. One woman's headaches were daily and severe. She, like me, made TONS of lifestyle changes all at once. She continually reassures me and encourages me, telling me how happy she feels that I have already begun to find hopefulness where before there was despair. This is a person who has been coming to this particular therapeutic yoga class for seven years, a chronic daily migraineur. Guess when her last migraine attack was? Over six years ago. Can you imagine that? I'm beginning to allow myself to imagine that. I'm not planning on it, mind you, but I am allowing myself to believe at last that this is possible, that after all this searching and medication and vitamins and doctor's visits there could be something that has a drastically wonderful effect on my life.

It's not easy to change everything at once. This evening my friend told me how she was about to order a greasy, delightfully cheesy Papa John's pizza. As soon as I was alone again, I thought about that pizza. Thought about dipping it in those notoriously fatty cups of garlic sauce and how wonderful it tastes.

And then I got home and heated up rice, broccoli, and onions for dinner. I feel satiated and healthy. No cheese-induced tummyache for me. But man--I do love pizza.

People, I want you to allow yourselves to be hopeful. I want you to imagine that it will be possible to live your lives without fear of a migraine coming on at the slightest provocation. For too long I have treated myself too gingerly--much of that was necessary and safe, I know, but it kept me from living my life well. KEEPS me from living my life well. (There goes Guru Jan again, acting as if she's got it all figure out, when really I'm play-acting here and there, only partly able to fully believe how healthy I am becoming.) It's so hard for me to imagine that any of these changes I've made could NOT help most of you. This from the girl who gets really frustrated when people, out of the goodness of their hearts, push so-called miracle drugs onto her--if Topamax works for so many, it MUST work for you, Janet! You're probably just not taking it right!

I fear becoming the person who pushes her ways onto you. At the same time, I can't resist trying to engage some of you in this discussion, to encourage some of you to incorporate healthier habits in an attempt to curb the number and severity of your attacks. Please let me know if I'm annoying you. Please let me know if you are interested in talking more. Please let me know if I should abandon this blog all together before driving you all crazy!! :)

could it really be that simple?

Were it not for overindulging on New Year's Eve (um, oops), I would probably still be having a migraine-free 2009. On the evening of the 31st, it'd been nine days since my last attack. As of 8 AM on the 1st, however, I was back at square one. That time I knew precisely who was the culprit: me and my re-found affection for white wine. Yes, it's true--I'm drinking that delicious nectar again, but with at LEAST 16 oz. of water with every glass of wine. Worked out well for me 'til NYE when I made the mistake of having a nightcap. Turns out wine is a bit more alcoholic than what I'm used to drinking.

But that's somewhat besides the point.

For the first time, I really, truly believe that I can get this disease under control. I'm following my doctor's orders, yes, but I'm not doing too much that's out of the ordinary. In general, I'm doing things I've always known to be good for me, things that I've let slip out of my life for one reason or another. As I've mentioned here before, the regular exercise has already proven to be quite the boon. It was nice to be validated by my new doctor, told that even long walks would give me a boost in serotonin. I don't need to swim at sprint-speed for an hour or even turn my walk into a run--I can just walk briskly five times a week and reap the benefits of exercise. It took some effort to let go of the notion that an "in shape" person should be able to jog or swim laps for much longer than I can without getting winded. Truth is, I'm not in the best shape. Another truth is that my body doesn't like it too much when I overexert myself (migraine trigger alert!), so why not take it easy and work my way up to some gentle exercise that fits the bill and makes me feel better?

A few days ago, I walked by the Habitat for Humanity parking lot on a walk. "Girl, you need to be runnin'!" a worker loading boxes called out to me. I do believe that a few months (or even years) ago I would have felt a bit bad after hearing this, simply knowing that I SHOULD be able to run and jump and do the activities a healthier person can. But this day was different. "Nah, I'm more of a walker," I called back, to which the man responded with a smile: "All right, all right!" I could have cited the arthritis in my knees, my bouts with sciatica, and my tendency to develop a migraine when I overexert myself. But I didn't. I just admitted that I'm more of a walker and kept on going. And you know what? I wasn't hard on myself afterward. I didn't spend too much time harping on the differences between my super-in-shape self of the early 90s (when I was a pre-teen, mind you!) and the 28-year-old I am today. I just kept going, and I felt great. There is a joy in being able to move and exercise without pain; you don't need to overdo it in order to feel accomplished. If there's one thing I've learned in these 2+ months of exercising healthily, it's that it's important to do what's right for you and not judge yourself by the standards set forth by fitness experts and marathon runners. Just do what you can. I do, and I hope to continue doing this.

Most of the other recommendations from the doctor were pretty simple, too. Eat well, treat my body well, and the like. J., my beau, pointed out the fact that many of the doctor's tips were tips he'd recommended for us long ago. Eat more fresh fruit and vegetables. Try to cut out dairy. J. hadn't called the "weed out white and enriched flour" bit, but that wasn't surprising. White and enriched flour is rougher on your system if you're sensitive like me and have IBS.

I keep reflecting on my wonderful visit and wishing more people could meet with this same doctor and have success. Were I you, I'd be skeptical. All the same, I'm putting it out there: I'm convinced that this person could help many of the people reading this. No, I'm not going to post his name and information (though if you are convinced by my admiration you can email me for details). He diagnosed me with several diseases/disorders I'd long since guessed I'd had, but didn't diagnose in a way I perceived as threatening or upsetting. He just verified my suspicions: I have mild depression, chronic fatigue (but not necessarily chronic fatigue syndrome, mind you), arthritis, allodynia (which I suspected I had on my scalp but had no idea was related to the bruised feeling I often have on my arms, legs, and torso!), Migraine disease (duh), irritable bowl syndrome (IBS), hypersensitivity, and mucositis (inflammation of the mucus membranes--mine is chronic but should be helped with my new regimen). I felt vindicated and relieved--all of these seemingly disparate symptoms I've been suffering from for a long time were all named, and all of them were related to my naturally low serotonin levels. The doctor is convinced that regulating my serotonin levels will allow me to live a happier, more productive, and less painful life. He pointed out how much better I'd been feeling since I started exercising and said that the exercise, combined with a diet that's easier on my system and some other exercise and relaxation techniques, I could cut out the majority of my migraines.

Glory, glory, hallelujah!

Every day I make a smoothie chock full of good things for me--blueberries, pomegranate juice, tea, oatmeal soaked in rice milk, flaxseed, and some supplements. Each morning and night I take supplements/vitamins, a few of which I've been taking for a couple of years now. Five days a week I'm to engage in "gentle exercise" for 30-60 minutes, depending on how long it takes for me to reach the peak when I have the endorphin rush. I've been exercising 45-70 minutes when I go out and walk. Tomorrow I'll call and sign myself up for therapeutic yoga class (which I convinced Handicapped Twin to go to, too!); soon I'll buy a book on mindful meditation (the main form of meditation that has lots of good research behind it, hence the hospital being able to endorse it). The more I do for myself, the better and more hopeful I feel. I've already begun returning more to what I consider my "real" self--making calls to distant loved ones with more frequency, writing letters again (something I was once famous for but sort of dropped in recent times), and persuing creative activity. Hell, I even enrolled in the Sketchbook Project and am trying my hand at drawing, something I never thought I'd do.

I'm happy. I really hope you are, too. I hate the fact that I might sound as if I'm proselytizing, but it's hard to hold back when you've been hopeless for so long and suddenly see concrete evidence that your life is changing for the better. I dare any of you who've made it through this entire blog entry to start exercising a few days a week to the best of your ability and see if you don't feel better. I dare you!

Happy 2009. Love love love.

tired of being tired

I'm so tired all the time. I've a sneaking suspicion this has to do with the weather, as pollen has permeated every breath I take for a couple of months now. When I'm not in the Georgia air, I am traveling--and traveling makes me tired, too.

When I first started taking Petadolex and rid myself of Zonegran, I was happily shocked at the energy boost I felt. "Wow," thought I, "turns out it's not normal to want to take a nap ALL THE TIME." I wanted to do things; I cleaned the house without complaint while blasting music or This American Life (my life's blood).

But recently I've become tired again. In the last week, I've attempted to go to bed at the same time each night and rise at the same time each morning. Maybe I'm getting too much sleep at once? (In a week I've not yet avoided my obnoxious pattern of waking up in the 3-5 AM range--grr.) I get up and at 'em and have even been getting exercise recently. Seems like the new me would be ready and rarin' to go.

But no. I just want to close my eyes. Is it working on the computer? Maybe, but not being on the computer doesn't guarantee wakefulness. Instead of my long walks resulting in an energy boost, I want to curl my sweaty self up on the couch and doze off for awhile. Driving makes me tired. Reading makes me tired. Walking makes me tired. Immobility makes me tired.

What to do?

Oh! One more thing. Maybe this nugget is my savior, the piece of the puzzle that will soon right itself and make it so I can live energetically again. I cut out caffeine completely about two weeks ago. I had cut down a lot and was only having caffeinated coffee when headachey or (in one case) slightly hungover. But after one cup I'd switch to decaf (a la my parents).

Now I'm clean, kids. I'M CLEAN! But I'm tired. The boost that caffeine provides is brief, I know, so having a cup of joe is not the solution.

I ingest six BILLION* pills of riboflavin (B2) each day and take my multivitamin in the morning. I have been eating breakfast, including delicious fruit smoothies and chock-full-o-goodness juices and snacks.

What gives? Does anyone see something obvious happening that would explain my sleepiness, my laziness? Am I missing the obvious or am I doomed to a sleepy existence forever!?

* or so it seems

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!

Migraine & travel

Tomorrow morning--ahem, THIS morning--I'll leave my house early to drive to the airport in rush hour traffic. My mom and I are flying to Virginia together to spend some time with my aunt and my cousins; it should be nice.

Despite my intense, feverish addiction to travel, I often dread the first day of it. Getting up on time, worrying that I have neglected to pack something, not sure if I'll make it to the airport in time, sitting under fluorescent lights in the gate area, the air pressure shifts in the plane, etc., etc.--all of these factors combine and, more often than not, result in a Migraine attack.

For this trip, I didn't follow step one of my own advice, but I think I'm doing well with the rest of it.

Tips for traveling migraineurs:

1. Get organized a couple of days before you go. This way, you'll feel less stressed regarding the packing process and will remember to add forgotten items, as you'll have more time to realize you've not packed them. For me, counting out all the pills and vitamins I'll need during the trip (adding on an extra day's worth for good measure!) is the first step I take. Too often I've been on vacation and reached for the medicine bottle only to remember it's still in my cabinet hundreds of miles away!

2. For people like me who know fluorescent lighting is a trigger: If you're staying in a hotel or with friends/family, ask your host about the lighting situation. Will there be fluorescent lights at the hotel? Request incandescent bulbs IN ADVANCE or else your home away from home won't be as comforting and healthy as you'd like. Will there be fluorescents at your friend's or family's house? Ask them if they could pick up a few incandescents on their next shopping trip--you'll pick up the tab. And remember: always have your eyewear to protect yourself from unavoidable lighting!

For those of you with phonophobia and/or trouble sleeping: bring earplugs! You never know what will be happening around you, and missing out on good sleep will drive any person crazy--and it will make it more likely you have a migraine episode.

3. Have all your medication packed in your CARRY-ON bag. In the rare chance your luggage is lost or delayed, you can't afford to screw up your schedule, especially since your normal life routine has been shifted around for the day.

4. Have abortive meds nearby--in your pocket or in an easily accessible part of your carry-on bag. No worrying that you have to wake up the snoring man next to you in order to get your meds from the overhead bin--just keep them very close! Even if you don't have an episode, you'll be comforted by the proximity of your salvation.

5. Tell yourself (and your traveling companions, if applicable) you have Migraine disease, and tell them when you're nearing your limit or when you won't be able to participate. Don't eat foods that are on your list of triggers just because a very charming hostess has offered them up to you. Don't go to the amusement park if a long, hot day in the sun will make you sick. Be honest with yourself so you can best enjoy your free time, and don't try to pack in too many things without scheduling in some down time.

6. Carry some granola bars or other healthy snack with you to combat low blood sugar. Most of us know by now that skipping meals is a sure-fire migraine trigger for most. Keeping a snack or three in your purse or carry-on bag could very well save you from having a Migraine attack when you're rushing to and fro and have no time to get a meal.

I'm sure I could ramble on, but I'll leave it at that. I was going to write another post for this here Migraine Blog Carnival, but since I'm leaving in a few hours' time, I have travel on my mind.

Speaking of that, I need to take my own advice and remind myself that it's time for bed. ;)

good morning, migraine girl

Just another morning here. Omega-3 (fish oil), 4 B2 pills,

500mg of magnesium, a multivitamin, and a sinus pill + Naproxen to
combat the weather (those last two are rare bonuses!).

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.)

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!

Is it working?

When my loving, good-natured friends and family ask me about my healthcare regimen, I try to remain energetic as I list the things I ingest each day, the activities I try to do to keep the Migraine attacks at bay.

I take 400 mg of Vitamin B2 each day--that's about 23,000 times the recommended daily allowance. Ha! I read a study online linking that daily intake over a long period of time to an overall decrease in Migraine frequency. I started taking the vitamins each day not because of this googled study but because of my neurologist's very strong suggestion--the search is what came after his suggestion.

Along with the B2 is a capsule of Magnesium. 500mg of it, to be exact.

Added to that daily list of fun things to swallow?

• 300 mg of Zonegran/Zonisamide (which is now finally generic, I suppose, for the price went down from $100 for a month's supply to about $40 at my local grocery store pharmacy)
• Omega-3 (fish oil)
• 20 mg Amitriptyline (Elavil), which I was on long ago, got off, and just recently re-started

I go to my massage therapist/cranial sacral therapist whenever I can afford it. Unfortunately, this hasn't been too frequent of late. For my last few appointments, she hasn't done much cranial sacral therapy because my visits have been right after a Migraine headache and she is unwilling to manipulate my cranium at all and possibly trigger another attack. (Thank you, wonderful woman.)

Of course exercise is always recommended, as long as I don't overexert or overheat myself and get a Migraine that way. I definitely don't get as much exercise as I should; this I know.

Minimizing exposure to triggers is something I've gotten quite deft at; managing stress is another lifelong issue I'll never master, but I am coping pretty well (for me).

So back to the subject of this entry. Back to the question that I am always faced with as soon as I tell my friends and family about my lifestyle changes, my new (or old) medications, that new trick I read about in a medical journal:

"So, is it working?"

I feel like I don't know what it is that's doing the trick--or not doing the trick--anymore. I have a so many elements in my life, so many chemicals running through my system. How am I to tell which one is the one that's working? Is it their complicated, complex relationship with one another that does the trick, at least most of the time? If I removed just one of the pills each day, would the whole system come grinding to a halt and leave me in pain, or would I feel even better than I do now?

I am not in a well-controlled scientific study. I cannot aptly determine which medication is the one that's working best for me. Part of me thinks that my body has gotten a bit better on its own over the years and that I could cut out all this expensive treatment and get just as many awful Migraines as I do now--and have just as many gloriously pain-free days as I do now.

But most of me is pretty sure the medication's helping. That I need the neurologist's words, reassurance, and comfort. That this disease is certainly way bigger than I and that I may never know what it is, exactly that's working--or how well it's working at all.

So my answer to family and friends remains the same. I don't know. I just don't know.
Were this a personal essay, one with sparks of humor and hints of charming self-deprecation, my answer would provide you with an amazing conclusion that would make sense of it all.

But it's just not the case here. I just don't know what's helping, and I'm too scared to take something away to find out if it hurts.

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.