Category Archives: Chronic migraine

Half-life takes on a whole new meaning

Half-life (t½)

noun

  1. the time taken for the radioactivity of a specified isotope to fall to half its original value.
    • the time required for any specified property (e.g., the concentration of a substance in the body) to decrease by half.
  2. the amount of time spent actually living your life if you have chronic migraine

You’ve probably seen the ads.

A woman curls up in fetal position on a couch, her back to the camera, while a voiceover asks: “Are you living a maybe life?”

The voice goes on to describe how chronic migraine — defined as 15 or more migraine days a month — leads to living a “maybe” life, full of tentative plans that may have to be jettisoned at a moment’s notice. Maybe you can go to the kids’ dance recital tonight, maybe not. Maybe you’ll be able to get out to the grocery store today, maybe not.

Know the half of it.

Let me tell you. I’ve had chronic migraine all of my adult life, meaning that I am ill about half of the time, and there is no “maybe” about it. If you have that many migraines a month, you’ve got a 50/50 chance on any given day that you’re going to have a migraine. Do the math. Fifteen days out of a possible 30 (plus or minus) in any given month is 50 percent of the time. That’s half of your life.

That’s why I think it would be far more accurate to call it living a half-life, because if you’re sick this often, you  spend half of your life trying to make up for the other half that’s been lost.

A genetic link?

I’ve often wondered if there’s some biological correlation between my condition and bipolar disorder. There are striking similarities, not the least of which is the fact that studies indicate some sort of neurological dysfunction in the same area of the brain for both conditions. In addition, both conditions are characterized by manic swings from one state to another. In the case of bipolar disorder, the swings are of mood, whereas the sweeping changes with migraine are physical but equally dramatic.

This is more than idle curiosity. There is a history in our family of women being afflicted with one or the other of these conditions.

My mother’s mother suffered from migraines for much of her adult life. In her case, the headaches came only one day a month. But my mother can vividly describe how they often occurred on washday. Grandma would rush through the day’s wash with the old-fashioned wringer and tub before she had to retreat to a dark room, from whence she would not emerge until some 24 hours later, ashen and spent.

The good, the bad and the ugly of it

Similarly, I spent my childhood watching my bipolar mother swing crazily from euphoric bursts of creativity in which she would sit at the piano for hours, banging out one complex piano concerto after another, completely oblivious to her children and our needs. On her good days, she could plan an entire program for her school’s holiday music concert in the course of a single evening. These were glorious displays of her extraordinary talent.

But then there were the bad days, where she would plummet into a  pit of doom that seemingly had no bottom to it, and that seemed to need nothing quite so much as to drag me down into the depths with her. Those were the times when I would cringe in my bed in the dark, waiting for her to burst into my room and demand tearfully that I come keep her company in the living room. Once there, she would  recount the day’s litany of wrongs, injuries and slights that had been done to her by life, by other people, by anyone but herself.

There was never an official diagnosis for her condition, primarily because in my mother’s eyes she was fine and everyone else was crazy. So she never sought treatment of any sort. But you tell me. What does this sound like to you?

Like mother, like daughter? 

In reaction against her perpetual emotional chaos, I carefully cultivated a persona that was her exact opposite: determinedly calm, detached and unflappable. I am the ideal person to have around in a crisis, because I can keep a level head when everyone around me is coming unraveled.

But secretly, I dreaded passing on the legacy to my own children.

I dreaded it so much, in fact, that I almost didn’t become a mother at all. As it is, I waited until fairly late in my childbearing years before giving birth to two beautiful, healthy daughters. So far, both of them seem to have escaped either manifestation of this curse.

Still, while my own moods have remained relatively steady throughout my adult life, my physical wellbeing — and the accompanying energy spikes and nosedives — has been rather unnervingly similar to my mother’s wild mood swings.

The legacy limps on

I spent years worrying that the only thing my daughters would remember of their childhoods would be watching their mother crawl around the house on her hands and knees on the days when the pain was particularly intense. It was the only way I could see to the day’s pressing needs, which are always present when there are small children in the house.

Now that they are grown (or nearly so), they can tell me themselves what they do and do not remember. And luckily, they don’t remember any of that. What they remember is going out into the back yard to hunt for flower fairies. They remember spreading big blankets on the living-room floor to accommodate the groups of friends who came for sleepovers, which of course never involved anyone getting any actual sleep. They remember trips to pools and parks and museums. They remember my appearing by their bedsides to soothe them if they awakened in the night. Normal kid stuff.

Whew.

Back in an upright position

These days, the demands on me are considerably lighter than they once were. My neurologist has prescribed a whole raft of powerful prescription drugs to manage the pain. And even if they can’t completely eliminate it, even on those days when the pain is still sort of hanging around and flying at half-mast, it’s still possible for me to function.

Even if the world is spinning dizzily around me as though I just stepped off a 90-mile-an-hour carousel … even if  my stomach is lurching and roiling with a volatile stew of acids … even if the jackhammers are mercilessly drilling craters in my skull … even if I’m so drained and fatigued I’m at the brink of bursting into tears … I can still manage to present the illusion that I am perfectly fine and all is well.

I’m not being a martyr. I just get tired of explaining myself, and I’m not willing to miss out on half of my life–or any of it, for that matter. Sometimes it’s easier to fake it as best I can in the hope that no one notices how grey my skin is that day, or how my hair hangs down around my neck in a limp clumpy mat, or how my eyes are sunken deep within dark rings that look like ghastly bruises. Or how I seem not quite as funny that day, not quite as sharp, a little slower on the uptake in an exchange of witty banter.

And sometimes, faking it can come reasonably close to actually making it.

Those are simply the days I won’t be going to the gym. You probably won’t find me mowing my lawn or washing the windows on those days. And if you’re really observant, you might notice that my face may be just a tad grey, my hair just a tad clumpy, and my eyes just a tad sunken and bruised.

And I just now got the joke you told me two minutes ago.

As a matter of fact …

You might even say I lead a double life nowadays, rather than a half-life. On any given day, there’s a 50/50 chance I am deliberately concealing my true physical condition to keep colleagues, friends and even close family members from guessing how I’m feeling. I take considerable pride in the fact that many people who know me fairly well have never guessed I even have this condition. (Although I suppose some of them are going to know now that I’ve posted this essay.)

And if it’s one of those truly awful days — one of those horrible terrible no good very bad days when even the maximum dosage of those drugs can’t make a dent  — it’s possible no one is going to see me at all. I do my best to avoid letting anyone witness what’s left of me on days like that. It’s not pretty. In fact, according to the small handful of people who have been there to see it, it can be downright terrifying.

Don’t worry. Be happy.

But I don’t think anyone should worry on my account. Truly. Because don’t forget: No matter how poorly I am feeling today, there’s a 50/50 chance that tomorrow, I’m going to be feeling just fine.

 

 

 

 

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Filed under Articles, Chronic migraine, Essays, headache, healing, Migraine

Almost famous

Sometimes opportunity doesn’t exactly knock. Sometimes it just rings the doorbell and runs away again before you can answer.

I was pleasantly surprised late one recent afternoon when I received an email from HuffPost Live, the online news network of the Hufffington Post. They were doing a segment on scent-related technology, and I was being invited as as a guest. If you check way back to the early mists of time on this web site, you’ll see that one of my early posts about a year-and-a-half ago was about the untimely demise of my sense of smell (anosmia) after an accidental encounter with white vinegar.

Don’t ask. You can go read it if you really want the gory details. It’s in the November 2011 archive.

Out of the blue

Still, that brief blog written shortly after the vinegar incident is the only thing I’ve ever written about it. I’ve given the matter little thought since then; certainly I’ve never pretended to be any sort of expert on the subject.

So the email came out of the blue as far as I was concerned, and I had to do a bit of a scramble just to remember when, exactly, I had written about it. I couldn’t remember what I’d said, either, so I had to print out the post so that I could read it over and highlight passages I thought might interest them.

I was a little apprehensive waiting for the appointed time of the live segment, hoping that the conversation wouldn’t stray too far from the two or three catchy phrases I wanted to share with the listening audience.

But I was ready. If there’s one thing I’ve learned about the breakneck pace of our high-tech information age, it’s that the fast-paced world of journalism has no time for expert guests to hem and haw while they try to figure out their main idea. If someone needs a quote from you, he or she needs it now. Right now. Not five minutes from now, when you’ve had time to think about it. Right now as in right this second.

Ready … set … no go

Therefore, I had my key phrases highlighted, my main ideas memorized, by laptop camera poised at just the right angle to de-emphasize my double chin.

Then I waited.

The appointed time came and went–the featured speakers were introduced one by one–the lively conversation began, and I sat poised in front of the camera, smiling, waiting for a call that never came.

Was I disappointed? Sure I was. But there was a slight sense of relief as the discussion unfolded and I quickly realized I simply had never thought about the subject in the same detail as had the selected guests. Two were scientists who specialized in the olfactory system. Two were authors who had written entire books about  anosmia compared to my meager 727-and-some words. The fifth guest was an artist with an entirely different perspective.

Don’t get me wrong. I would have done my level best to be articulate and interesting, and certainly I would have welcomed the exposure. We writers are grateful for any chance we can get to promote our work. But the selected guests were simply more immersed in the subject than I was, and therefore they were better for that particular segment.

It’s all good

Still, I am proud that something about my work stood out enough for the staff at HuffPost Live to consider me worth inviting. That feels like a pretty decent feather in my cap.

Meanwhile, I do have a host of subjects about which I have written extensively. Migraine, for instance, or sibling violence, or bullying, or sexual assault. Those are my areas of expertise. And someday, I hope some enterprising journalist will need an expert source on one of those areas, will comb the existing blogs and find something in my words that’s worth a second  look, and come calling for my opinion.

And I won’t have to re-read anything I’ve written, and I won’t need a moment to collect my thoughts, because it’s all in my head.

When that happens–when opportunity gives my door a good solid knock–I’ll be ready.

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Filed under Articles, Chronic migraine, Essays, Quick takes, Uncategorized, writing

Weigh those risks carefully

The German drug company Gruenenthal, which came to notoriety in the 1960s for producing the anti-morning-sickness drug thalidomide, this week issued an “apology” to the thousands of babies around the world who suffered birth defects as a result of its use.

According to a Sept. 2, 2012, story published by the Reuters news service, thalidomide was marketed internationally to pregnant women in the late 1950s and early 1960s as a treatment for morning sickness. About 10,000 babies were born around the world with defects caused by the drug, mostly malformed limbs or missing arms or legs.

Why take the chance in the first place?

While I have to agree with the families who dismiss the apology as “too little, too late and riddled with further deceit,” coming more than 50 years as it does after the fact, for me the story carries much wider implications. It’s a sobering reminder to moms-to-be everywhere not to take anything other than prenatal vitamins when pregnant, no matter who tells you it’s safe. Will your doctor be there to help you raise a child who has been damaged by the drug s/he said you could take? Will the drug company?

I speak from experience. For years I have suffered from chronic, debilitating migraines that require powerful drugs to control them. Ironically, one of those drugs is manufactured by an American pharmaceutical company that was responsible for the widespread distribution of thalidomide here in the United States.

Out of compassion for my constant misery, my physicians had said I could “probably” take those medications while pregnant and nursing, because there was no “empirical” evidence they caused birth defects. Well, an absence of empirical evidence might simply mean the drug hasn’t been tested for those specific conditions.

So while I appreciated my doctors’ sensitivity, I did not take my prescription medications — nor even over-the-counter painkillers (which never worked anyway) — during the eight or so years when I was either pregnant, nursing or thinking about it. That was back in the 1990s, and I have never regretted a single second of the sheer torment I went through as a result. I somehow managed to muddle through the worst days, and I can assure you it wasn’t pretty.

My daughters, however, are pretty. Very pretty. In fact, they’re perfect.

Fraught with risk

This takes on special significance for me, since I gave birth to a son in between those two perfect girls whom the medical community had written off as “hopeless,” because he had the great misfortune of being that one in 12,000 babies for whom something goes catastrophically wrong somewhere in the developmental process for no discernible reason.

It had nothing to do with drugs. I followed the same strict no-drug policy with him that I had with the other two pregnancies. In fact, it had nothing to do with anything I did or didn’t do. It was something that Nature herself had decreed, for reasons that to this day remain unknown to medical science. And it was completely out of my hands from the very earliest hours after he was conceived, when that first cell division went disastrously, tragically awry.

So why, when the very process itself of bringing a new life into the world is already fraught with risk, would anyone consciously add to the risk to her unborn child?

Weighing the risks

Thalidomide was prescribed for millions of pregnant women to treat morning sickness. Like migraine, morning sickness does eventually go away. But unlike chronic migraine, it does not come back day after day, week after week, month after month, year after year. So I truly wonder why anyone wouldn’t reasonably conclude that the best course of action in all but the most severe cases (and maybe even then) would be to simply tough it out, learn to tolerate some discomfort, and wait for it to be over.

I have heard it said that severe morning sickness itself can pose a threat to the unborn child by making the mother dangerously ill or depriving the developing baby of important nutrients. And I can certainly understand the importance of reducing the risks of a potentially life-threatening condition.

But my chronic migraines were and are an ever-present life-threatening condition. They are severe enough to pose the risk of death by migraine-induced stroke. It’s a threat that hovers every day a migraine looms. In my case, that’s about 15 days out of every month. My neurologist charts the progress of my migraines with considerable concern, because the risks of the condition itself are at least equal to those of the medications he prescribes.

During the course of my childbearing years, there certainly was no question in his mind that the death of a pregnant or nursing mother would be cataclysmic for the infant.

Toughing it out isn’t pretty

Ultimately, he left the choice up to me. So even with those very real risks in mind, I chose to tough it out while I was pregnant and nursing.

And as I said, it wasn’t pretty.  When my first child was an infant, it was easy enough to bring her into bed with me on severe migraine days to cuddle and nurse all day long. But when she grew more mobile, and certainly when I had two active little ones to look after, things got much more complicated.

There were days when I crawled around the house on my hands and knees just to get them something to eat. I would read and sing to them through streaming, bloodshot eyes while lying on the floor. When I drove them to the pediatrician’s office, I always kept a stash of plastic bags in the front seat next to me, in case I had to pull over suddenly to throw up.

The guilt alone was crushing. Would this be all they would remember of their childhoods? Despite the fact that I made the most of days when I felt well enough to take them hunting for flower fairies or invite their friends over for sleepovers and beach play dates, I was haunted by the fear that the overriding memories they would have of their childhoods would be of their mother lying prostrate on the floor, too immobilized and incapacitated by illness even to get up and lie on the couch.

Strong and compassionate

But instead, something wonderful happened. My daughters have grown up strong and confident, full of happy memories of trips to the park and tea parties on the front porch. One vividly remembers how I staunchly defended her over the course of two difficult years when she was being bullied at school and her principal refused to protect her. The other shares in common with me a love of dance and movement, and has occasionally joined me in my ballet workout sessions.

They don’t remember my being ill. Ever.

And they are compassionate far beyond their years. They have an uncanny ability to sense when someone they love needs an encouraging word or a kind gesture, and they always seem to know exactly what to do.

I knew for certain that I had triumphed over my condition several years ago when, within days of one another, each one confided to me that she had figured out she was my favorite daughter.  Each one had specific examples she could cite that had demonstrated to her that I clearly favored her over her sister.

“Don’t tell your sister,” I told each one. “This will be our secret.”

And the great thing was, they were both right. Each one is special, and each one has shared special moments with me that are unique just to her.

No regrets

As for my son, he is never far from my thoughts. Every year at Christmas time, we hang a pair of small blue booties near the top of the tree, a visible reminder that he is still very much a part of our lives together as a family.

But I am not haunted by regrets. I do not awaken in the night to phantom cries from an infant I somehow failed to save. The things that keep me awake, when they do, are the things that keep most adults awake: unpaid bills, looming deadlines, job performance reviews.

I am grateful that I never have to look back and ask myself if there was something – anything – I might have done differently to help my little son. There was not. I did everything I could. I gave him life to the extent that I was able, I celebrated and loved him for the painfully brief time that he was here, and I remember him always.

No better promise than this

This is truly all that life promises. We are given no guarantees that motherhood will be free of pain, discomfort, and heartache, along with its indescribable joys.

But we should be able to live with a clear conscience. That is something that is well within anyone’s power to control. That is what I would wish for any mother.

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Filed under Chronic migraine, Essays

If she could do it, so can I

If Laura Hillenbrand could produce her bestsellers (Seabiscuit, Unbroken) while virtually incapacitated by chronic fatigue syndrome, I can do likewise while virtually incapacitated by chronic migraine. You somehow figure out how you’re going to live the life you want, and do the things you know you were born to do, no matter what. Because the alternative is simply no alternative at all. It isn’t worth considering. It’s unacceptable.

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Filed under Chronic migraine, Quick takes