#NMAM "Day Dream Believer"

Today's blogging challenge for migraine awareness is: Describe your dream day, without a migraine to hold you back. Before we start, let me tell you that I hate this exercise. I don't want to think of how my life would be without migraines. All that's going to do is remind me how much my life is not how I want it. I can't be encouraging feelings of envy like that! I've got to deal with life how is is, not life how it isn't. And life how it is, is difficult enough!

I wanted to grow up, graduate from college, settle into a nice career, get married, have children and raise a family. A simple, accomplishable dream, right? Apparently that was too big of a dream for me. I was able to graduate from college, but I had to switch my major when in the middle of my sophomore year. My studies got interrupted by a ruptured cyst on my ovary. In my Junior year, I caught a series of sinus infections and flus that had me bedridden for months. The only thing that saved me from having to drop out was that I had switched to and English major that wasn't dependent on attending class every day. (My grade was determined by two papers---one at midterms and one at finals. That left a lot of time for me to baby myself and get through.)

I settled into a nice career: I was able to join my English major with a love of computers and become a technical writer. It made good money, and it included a lot of contract work, where I could take off time to raise a family, and not have my income hurt too badly when I decided to return to the workforce. Except that I started getting sicker and sicker. Getting to work from 9 to 5 was becoming impossible. I had companies who would allow me a flexible schedule, but I had to stop working when the migraine went to an every-day ordeal (despite all medical interventions).

I thought I had found a nice man to marry---my college sweetheart. Sure, things hadn't worked out when we were kids, but we were adults now with new perspectives. He'd become a responsible Navy man, like my father. I'd realized that I'd lost a good thing when I had it. We decided to get married, but that was also right when my illness made me unable to work. All our wedding plans got thrown into disarray. We ended up canceling the whole thing, because I just couldn't manage... anything. All of our money was going towards my medical bills, and we still weren't getting any answers. I didn't want to remember my marriage as the time I was sick, and we both thought I could get better. We figured it had to be soon. I'd already been through 9 months... surely a migraine couldn't go on longer than that! But we were wrong.

It soon became apparent that I wasn't getting better. The money was running out. I would need his insurance and income, so we ended up eloping. No white dress... no friends and family... we had to borrow our witnesses from the next camp over---strangers to us, who were going to attest that these two people should get married. Yeah... that should have been a sign. But I was too sick to really pay attention to any omens that didn't involve my own body. The marriage didn't last long, as he quickly discovered he didn't really mean the "in sickness" part of our vows.

I dealt with the divorce, and my lawyer mentions how it's a good thing I don't have kids. I knew he meant with my ex..., but I still had to fight back the tears because I was wrestling with the reality that I could never have kids. That was the one thing I had wanted since I was a little girl: I wanted to be a mom. But my disease was having none of it. We had tried for a year to get pregnant, and I never even got so much as a close call. Turns out that my body doesn't even know that's supposed to be a normal part of a girl's life. The tests later confirmed it.

So I have a really hard time trying to dream up a perfect day. I thought I was dreaming up a normal, pedestrian, average life. Nothing too grandiose... I didn't need trips to Paris and Rome. I just needed my little corner of the world and a family to love. Maybe that's where I went wrong. I didn't dream big enough! Maybe I should have wanted the most extravagant lifestyle with lots of money and power, and little responsibility. Perhaps then I would have been "saddled" with a simple life.

My dreams have to include my illness. When I think of a future me, I have to imagine that it includes my disease, and that I have somehow figured out how to manage it. I simply must include my limitations in my fantasies, otherwise I'm aiming for a part of the map I can never reach. (You can't get 'thar' from here!) If I want to be able to believe in my dreams, it has to take reality into account. Otherwise, I may as well dream I'm an elven princess in a Tolkien paradise, with a life span of thousands of years and nary an illness to worry my pretty heart.

If I want to be a "Day Dream Believer," I have to include the pain and suffering. But I can dream that I'm able to get through the pain and suffering, gracefully, nobly, and perhaps even joyfully---experiencing pain, but able to laugh with a free heart anyway, knowing that the pain will pass and life will soon be sweet again. Having friends and family around me who are fully supportive, helping me to rise above the pain and live life to the fullest despite it. That would be a perfect day, indeed.

"National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com."

#NMAM "Let there be light."

Today's blogging challenge: Most Migraineurs have issues with light sensitivity. What do you do to cope with it? Avoidance, avoidance, avoidance. It's that simple. When the light hurts, I avoid it. I wear sunglasses (sometimes multiple pairs at once). I use a face mask. I put my leather jacket over my head. I put a hand up to block the lights of oncoming traffic. I make the light go away every way that I have at my disposal.

I refuse to use "energy efficient" bulbs, because they're one of the worst frequencies of light for migraine sufferers. I've gotten to be a pro at walking around in the dark, especially not putting my foot down on something that could hurt, or be hurt (like my cat). I've memorized the distinct sounds my pills make, so that I can tell what bottle I've got in my hands, without reading the label. (I do read the bottle before taking the pill, but it helps when I only have to open my eyes once.)

I've set my computer and phone to the lowest brightness available. If I need a flashlight, I use my phone screen instead of an actual flashlight, because the low setting is just perfect to reflect only the smallest amount of light needed to see where I'm going. I've placed a piece of electrical tape across the LED lights of my computer, because they're bright enough to bother my migraines (from the other room!) when all the other lights are turned off.

In one of my apartments, I even boarded up the window in the bathroom to keep light from getting in. The bathroom was the place I spent most of my time with a migraine---either because I had to hug the toilet, or because I had to sit in the shower and have the falling water distract me from the pain in my head. Light in the bathroom was not a good thing, and a window was a source of light, even at night. Solid wood boards covering the window did the trick.

How do I cope with light sensitivity? Any way I can...

"National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com."

#NMAM List topper

There are lots of myths and misconceptions about Migraine. Which one tops your list as the biggest and most common? What can we do to get the truth out there? My list topper? "It's just a headache." No... it is FAR from "just a headache." It's a neurological malfunction that disrupts the entire function of the brain and body, causes violent mood swings that cannot be corrected with medication (yet), and disrupts function in some of our most basic functions like the ability to form words. A headache will not cause half your body to become paralyzed, or make the muscles in your face contort so much that your own father can't recognize you. A true story, which I'll tell you now...

The migraine that left me so disfigured that my own father couldn't recognize me was a doozy of I migraine I had as a result of plane travel. Changes in atmospheric pressure is a big trigger for me. Usually, the change in weather is enough of a shift in atmospheric pressure to trigger a migraine. A ride in an airplane is a guaranteed trip to migraine hell. This plane trip was even worse, because it wasn't a non-stop flight. My head would get pressurized and depressurized, twice. To get the weather equivalent, I would have to go through the eye of a hurricane. The migraine that erupted in my head felt like a hurricane in my skull. The pain hit me after the first depressurization, and I had to be transported by wheel chair to my next flight.

When I reached my final destination, they had a wheelchair waiting for me. Apparently I was bad off enough that the flight called ahead. I was grateful for that kindness. They wheeled me to baggage claim, where I was able to crack my eyes, long enough to catch sight of my father. He was looking all around for me. I waved to him. He didn't see me. I turned to the gentleman who was pushing the wheelchair and pointed at my father. He wheeled me over. I saw the horror on my father's face as he realized it was his daughter in the wheelchair. The double-take he did when I looked up at him told me it was bad. "I couldn't even recognize you, your face was so twisted up," he told me later. I wasn't doing the twisting. It wasn't contortions of agony that had changed my appearance... No... The migraine itself had changed my face.

To this day, I have what my father refers to as my "pain wrinkle." It's an old scar on my forehead that starts to pucker up and become more noticeable, every time I start to get a migraine. He can tell, sometime before me, when a migraine is going to show up, based on that wrinkle appearing.

"Just a headache" won't do that.

"National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com."

#NMAM Name That Tune! - You get what you give

For today's migraine awareness challenge, I'm to "choose a theme song for Migraine disease or your headache disorder. See if you can find a YouTube video of it for your blog post." I always have the hardest time picking songs that have to do with my illnesses. Music is my escape, my way to forget everything that's going on around me, and just get lost in the flow of the harmonies and rhythm. Migraines took one of my favorite activities from me: clubbing. So to give my migraines or my disease a song is almost... unholy. I turned to my friends for suggestions, but still got stuck. That was, until I put in a CD I created when I was in the midst of my migraines... my song is "Get What You Give," by the New Radicals.


Here are some of the lyrics:

But when the night is falling
You cannot find the light, light
You feel your dreams are dying
Hold tight

You've got the music in you
Don't let go
You've got the music in you
One dance left
This world is gonna pull through
Don't give up
You've got a reason to live
Can't forget
We only get what we give

To say that my migraines have made me want to give up on life is an understatement. I cannot tell you how many times I have just dreamed of it being OVER. No more worrying, no more trying to hold on, no more sitting, curled up in the bottom of the tub, World War V playing out in my head, wondering how there can be so much pain in the world. Surely, no one has done anything bad enough to deserve this, and I'm no where near the level of a mass-murderer, so why does it have to be me that hurts like this? Such questions would no longer beg for an answer. I'd be gone, and there'd be no more to it. But then these lyrics come through...

You feel your tree is breaking
Just then
You've got the music in you
Don't let go
You've got the music in you...

My migraines disabled me. They stole a decade of my life, and took away even my most basic abilities to take care of myself. I've felt worse than worthless... I've felt like a drain and a detriment to those around me. And yet, when I put in this song, even if I'm screaming the lyrics through clenched teeth with tears streaming down my face, somehow, the message still get through...

Don't give up
You've got a reason to live...

I didn't know what my reason for living was at that point. I knew it had to be for more than just suffering. But I also knew that if I gave up, I'd never be able to find out what that reason was. I knew that if I didn't ride out the dark times, I'd never make it to the light.

"Fly high
What's real can't die
You only get what you give
You gonna get what you give
Just don't be afraid to live"

I got this email the other day and it just broke my heart. "How do you do it? I can barely walk. My thighs won't stop hurting. My hip joints won't stop hurting. The NSAIDs only dull the pain, and they tear my tummy and intestines up. Nauseated and cramped. Can't sleep. Loopy and head-achey from lack of sleep. Can't concentrate. Moods swinging in spite of my lithium and zonisamide. Just want to cry. How do you f***ing do it?"

Let me tell you, some days, I don't. Some days, I do end up a horrible lump of screaming worthlessness. I can do nothing except concentrated on treating one wave of symptoms after the next. The whole world disappears from around me and all I have is my symptoms. There is no quality of life. Life is hell and the best thing I can do is get through. Simple tasks that other people take for granted become nightmare situations. Trying to get from where I am to the bathroom and back is like mountain climbing. Standing on my feet, long enough to feed myself, is like withstanding a prize-fighter cage-match. There's nothing graceful about it. I just try to keep going... white-knuckling my way through the minutes, one after painful other, until I feel better. Sometimes, it's more minutes than I think I can handle. But I keep going, regardless of what I think. I hung on for the last 60 seconds... I can hang on for this next 60 seconds. Repeat, repeat, repeat.

Don't give up
You've got a reason to live...

Chronic pain is soul-stealing. I can't tell you how much I've cried over everything I've lost. I can't tell you how much I've cried about the bitterness of the wisdom I've gained. There shouldn't be this much pain in the world. It shouldn't be able to last so long. And it breaks my heart that I have this in common with anyone else.

But...

If my suffering can be of some good... If my suffering can help ease the suffering of someone else... If I can be there for a friend who feels lost, or for a stranger who feels alone... that's a good thing right?

Don't let go
One dance left
Don't give up
Can't forget

I've got a reason to live.

"National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com."

#NMAM Do That To Me One More Time.

What comfort measure do you find helps you enough during a Migraine that you go back to it again and again, and how do you use it? [This is not an endorsement. Your Mileage May Vary (YMMV).] I love Red Bull. When I have a migraine, that's one of the first things I'll reach for, even before I reach for medication. The combination of caffeine, sugar, B-vitamins and taurine seems to be the perfect combination. I've even noticed that when I'm not having a migraine, Red Bull doesn't taste as good. When I'm in migraine pain, it's nectar of the Gods.

I only got into drinking energy drinks because of my migraines. I remember an ex-boyfriend used to love them and would drink that instead of coffee in the morning. I couldn't see the appeal. I had drunk Mt. Dew by the 2-liter in college, and got to the point where all it would do is make my stomach upset. This just looked like another version of Mt. Dew. No big deal, right?

Oh, how I was wrong! I tried one when I was in pain, on the suggestion of a friend, and WOW. The moment I tasted it, I knew it had something my body was craving. And despite it's name as a so-called "energy drink," when I'm in migraine pain, I can drink one and go to sleep, no problem. Migraine pain doesn't seem to know what stimulants are. So no real drawback there! (Okay, it is expensive... I'll grant you that. Buying bulk and having access to those discount superstore

Since that day, I've been a loyal fan.

"National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com."

#NMAM June Is Bustin' Out All Over!

What's the best tip you can offer others for having some summer fun despite Migraines? Be prepared! Pace yourself! Always know where your sunglasses are. Keep a small balanced snack with you in case of delays. Carry your medication with you. If you have problems thinking or communicating with your migraines, have a card that explains what you need, that you can give to others if you're not thinking well. Stay hydrated, but don't forget your salts and electrolytes! Emergency, disposable ice packs are amazing. A microwavable rice sock is good for heat-relieving muscle tension. Ear plugs are good for noisy restaurants, and movie theaters that think louder means more exciting. Know thyself, and prepare.

For the longest time, I couldn't enjoy summer. The light, the heat... even if the weather was nice out, the day-star made me feel like a vampire. It's awful driving down streets where the trees cast shadows across the road, and the sun flickers in and out of my vision like a strobe light. The WORST is being stuck behind that guy with the perfectly reflective rear window, so that it's always like your staring into the sun. Can't take your eyes off the road, so you can't shield yourself from the mirrory-car-of-DOOM. Agony!

Summer nights are wonderful... if they get cool enough. Some places are so miserable that at night all it does it get dark. I remember living in the Mojave desert. My mother told me to take a cold shower, an old trick from when I lived in the Midwest, the days back before we had air conditioning. I had to inform my mother that in the desert, even when it's piped in from underground, "The water doesn't get cold, mom..." During the day, it would be 120*F (easily), and the wind that blew off the desert was hotter. There was a small window of time between 3 and 4 in the morning when it would actually get cool. Those were the only times to exercise or do any vigorous activity. And you could feel the heat of the sun before it started to get light out. It would come off the desert in waves.

In contrast, with a migraine, I'd happily freeze to death. I've walked through below-freezing temperatures, wind chapping my face, body bundled and head bare, relief spreading over me as the cold put the pain to sleep. In the cold, the migraine pain can't grip tightly. It tries, but the cold won't let it. The pain falls prey to the numbing effects, and it doesn't hurt as much. In the summer, it's difficult to find such an environment unless you have access to a walk-in freezer. The cold isle in the supermarket is a close second.

"National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com."

#NMAM Just shoot me now!

What's your worst Migraine trigger? Can you avoid it? How do you handle it? Huge weather fluctuations do me in. They're the worst... Huge. Inescapable Acts of Nature. Being a human barometer sucks, let me tell you. What did I do about it? I moved across country, to a higher elevation---Denver. I get botox every three months. I follow a sleep schedule as best I can. I pace my eating, and don't let myself get too hungry, or overeat. I balance carbohydrates and protein, and get my vitamins. I exercise regularly, using slow, paced exercises that don't make my blood pressure spike or fall rapidly. I have reshaped my entire life to beat this beast back down into it's rightful place of a slight, occasional annoyance. Every once in a while it's okay to be reminded: I'm a fragile human being.

I have one of those large back massagers (a dual headed vibrator) that I use on my head and shoulders. I have stretching exercises to help the muscle tension that builds up in response to my head pain. I have two medicated creams for my hands and feet for when the migraines make the neuropathy flare. I have medications galore that keep me in balance, and help off-set the break-through episodes. I have mantras that I tell myself to help me keep the faith, and keep pressing on, despite what my head is doing. For when it gets really bad, I have darkness and cold. And in worst-case scenarios, I have the ER. (Thankfully, my migraines have only required one ER trip in the last 5 years, or so.)

Now that I'm getting healthier, I'm also cooking from scratch a lot more, which I have noticed had had a huge impact on my feeling better. There's the sense of accomplishment in pulling off a fantastic meal, I can do some of my physical therapy while at the stove, and there aren't all the additives that come with manufactured food. Granted, there are some good foods you can buy off the shelf (Stouffer's is all natural, and they make an awesome mac & cheese), but they're a lot more expensive than cooking at home. Good in a pinch, but it does pinch the wallet. Fruits and Veggies I'll buy frozen, because they're frozen at peak ripeness. But learning how to make my own caramel and ice cream has been a wonderful time. Soon, I'll tackle more breads! (They're tricky at elevation!)

Mostly, the move has helped me. And when I visit places at sea level, the increased oxygen allows me to do well there, for just long enough to complete business trips and short vacations. When barometric pressure changes are what get you, go to where the swings in change aren't as drastic!

"National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com.

#NMAM Tea for Two

If you could invite someone (any living person) to your home for tea for the purpose of explaining Migraine disease to them so they would truly understand it, who would it be and why? I would bring my first GP from University of Washington Physicians, Dr. Ramses. He completely doubted me, and when I finally brought my mother in, he explained he was trying to push me off with mostly harmless medications because he thought I was manifesting these migraines as a tactic to get attention from my multiple boyfriends. How disgustingly rude is that?

Turns out, if he had just run the tests I asked him to run, he would have seen that my immune system was attacking my pituitary, and that my migraines were a result of that furious attack! If he would have stuck around to see me go through the Occipital Nerve Stimulator study, he would have learned that I can hold a steady conversation with 20 milliamps of current directly to my nerves. Why? My migraines shot way past 20 milliamps of pain.

The Occipital Nerve Stimulator (ONS) was an implanted bionic device, used to treat chronic, recalcitrant migraines. Chronic means more than 15 days per month (mine were daily). Recalcitrant means difficult to treat (I had been on every medication known to man, and through every treatment short of cutting nerves). The ONS was surgically implanted. The device sat above my left hip (in the butt), and two wires led from it, up my spine, to the base of my skull, where the Occipital nerves are.

After they implanted the device, they had to program it. They would turn the machine on, and then I would tell them what I wanted the maximum setting to be. It felt like the same uncomfortable, buzzing sensation you get when you hit your funny bone. You'll notice that after you "hit your funny bone" it's difficult to feel your hand or get it to move. This was the same principle for stopping the migraines. Send enough static nerve noise down the line and then the migraines can't generate. It also helped stop a migraine in process, when used over time. I had a really bad migraine when they were programming the device, so I figured that was good fortune in a way. They sat me in a dark room and turned the device on.

"Now let me know when it's feeling liek too much and you want me to stop."

"Okay... Keep going... Keep going..."

"Are you sure that's okay?" she asked very nervously.

"Oh yeah, this migraine is killing me. Keep going... Keep going.... No I'm serious, you can go a lot higher than that..."

"I'm sorry," she whispered. "It doesn't go any higher."

I didn't understand why she was so impressed until later. Most of the people in the study used the device between 4 and 8. I was the only person to use it at 20. My migarines could go higher than that. And they couldn't legally go any higher than that because it starts to damage the nerves.

I am a freak of nature when it comes to pain tolerance, and a freak for the amount of pain I can generation in my own body. It's amazing. Inhuman. It is through ignorance alone, of exactly how bad it was going to be, that allowed me to suffer through it. Four and a half years of freaky levels of pain. And here I still stand.

I want to invite my first GP over for tea.... a big old heaping pile of crow, and a beautifully decorated slice of humble pie. I'll show him the videos of the study sessions, where they adjusted the device, to prove to him just how awesome my pain tolerance is. The napkins will be embroidered with: I TOLD YOU I WAS SICK!

(*lol* Dream big!)

I had the device in for a few years past the completion of the study. After it was able to stop my 4.5 year migraine, I was able to treat with pills again, and those were much more gentle than the device. Plus, I ran into some user difficulties because the device wasn't designed to run at 20. The way it worked was there was a battery that you charged, and then you held that battery up to the device, and it recharged the device. They included little sticky plates and an even a belt, because recharging the device took a long time. Then, recharging the recharging battery took a long time too. They had to give me two batteries, because I ran the device so high. I would have the device on, I would have it charging, and I would have a second recharging battery charging. The second one of the recharging devices was done, I would swap it out with the other battery. I had to keep a near constant flow of charge to the device to keep it running at a level where it worked. It was like I was plugged into a wall. That's no way to live! So when it finally got to the point where I could use medication safely and effectively again, I switched back to that.

The device also made it impossible for me to get MRIs, and with my pituitary disease, that wasn't a good combination. So a few years ago, I had it removed. And since moving to a higher elevation, the severity and frequency of my migraines has significantly decreased. You couldn't even call them chronic anymore.

Yes, I've been a bionic woman. Pretty cool, huh?

#NMAM My First Migraine [repost]

[This is a repost for the June Migraine Blog Event: National Migraine Awareness Month (#NMAM).] Ellen Schnakenberg of Migraine.com posted an interesting migraine fact the other day: Most migraineurs have vivid memories of our first migraine. "It's a shocking occurrance. Our lives change in an instant," she says. For me it was the same. And when I saw her comment, the flood of memories swallowed me whole.

It was 1987 and my parents had taken us on a historical tour of half a dozen southern U.S. states, following a carefully mapped trail my father had made to show us Civil War landmarks along the way. Part of out vacation was a weekend in New Orleans. I remember it was the night my Dad wanted to see the blues bands play. Everyone was excited. Unfortunately, my father insisted on going into the clubs, even though the music was so loud on the street you had to shout to hear.

It wasn't even ten minutes of standing in that noise that I couldn't bear it anymore. My head was pounding. I wasn't surprised. I didn't think it unusual. But we migraineurs don't tend to think well when we have a migraine, and this was no exception for me either. What I didn't realize was I was a teenager complaining to my parents that their music was too loud. Yeah... that should have been my first clue.

On the way back to our hotel, lights got too bright for me even though it was night on the street. I closed my eyes and had my parents lead my by the arm. When they would tell me of an obstacle, I'd open my eyes briefly to move over or around it, then back to voluntary blindness.

When we made it back to the hotel room, my mother, unfortunately decided to put on perfume. The smell doubled me over in nausea. They opened the windows to air the room out, but it permeated everywhere. I wanted to hide under the covers from the smell and the light, but the heat of the blankets made the nausea worse and everything was off balance. She washed it off, but it was no help.

By that point, I also had a pillow wrapped around my head because normal conversation-level talking sounded like cannon blasts. Thankfully, it wasn't much later I was able to pass out.

I was 15.