Mourning and Hope

No migraine today, instead I am surfing the blogosphere and reading stories of other migraine sufferers. It’s comforting and heartbreaking and rather scary. Comforting, because, while I keep running into people who have migraines occasionally, used to have migraines, or once had a headache that sounds suspiciously like a migraine, I have not yet met anyone in person who has more migraines than I have. Reading other blogs, I feel that not only am I not alone, but it could be a whole lot worse. I have 3 to 5 attacks a month; medication seems to help about 2/3 of the time; and even when the meds don’t work, all the physical symptoms are relatively mild, except for the aura, which does go away in 30 minutes. And my attacks seldom last more than 12 hours, even when the meds fail. I have read blogs this morning of people who have 2 or 3 attacks a week, or live with migraine nearly constantly, or have attacks that last a whole week.

That’s the heartbreaking part, too – what could a phrase like “live life fully” mean to someone who always has a migraine?

It’s also the frightening part – I say 3 to 5 attacks a month, but in reality, it was pretty consistently 3 attacks until this month, when it’s already spiked to 5. And the month’s not over, and my period is due any day now, so the possibility of another attack before Thursday is quite real. Am I getting worse? Am I going to be one of those people who is never free of this?

In reality, I already feel I am never free of it. If I accidentally glance into the sun or the headlight of an oncoming car, or if someone takes a flash photo, I mistake the blind spot for the beginning of an aura, and I have to concentrate on it very carefully to determine if it’s getting smaller (good) or bigger (Imitrex time!). I used to be the sort of person who could occasionally skip a meal or lose a little sleep for the sake of convenience. Now I have to drop everything if it’s lunchtime, even if I’m not hungry and whatever I’m doing is more interesting. To my “never leave home without it” list of keys and wallet I’ve added Imitrex and one of those 8-oz bottles of water they give you on short plane rides.

The small bottle of water is because one day a migraine struck as I walked past a Starbucks. I swallowed the Imitrex without water, then worried it wouldn’t dissolve fast enough. I went into the Starbucks, thinking an iced decaf would be the fastest thing they could serve me that I could also drink fast; hot coffee would need to cool. Little did I know that even iced coffee has to be prepared by the friggin’ barista, for pete’s sake, who had about 8 drinks in line ahead of me. So, frantic, I asked for water. The cashier seemed puzzled that I wanted a glass of tap water, as if I were in, you know, Haiti, instead of a nation with sophisticated water treatment plants. (Doesn’t Starbucks make its coffee with tap water anyway? Maybe not – maybe that’s why it’s so expensive.) “Please hurry,” I said, “I need to take a pill!” (At this point, explaining to him that I had already swallowed the pill but that it was probably stuck near the top of my esophagus where it was doing me no conceivable good seemed like more than he could handle.)

Huh. I started out to say how migraine was always with me, even when I’m not actually suffering from it, and that is a sad and frightening thought. But telling the story of the dumbass Starbucks cashier cheers me up somehow. It’s exactly the kind of story I love to tell on my main blog, a story of those little burrs in life, stupid clerks and weird policies, that trip us up but make really good rants. And the fact that I tell it here makes me feel that even if this disease is taking over my life, I’m still me.

Wasted Time

May 28, 2007; 11:43 am.  The Red-Haired Boy and I have just flown back in from DC on an early flight and are taking a nap.  I wake up and say, “Oh, shit, I’m having a migraine!”  RHB hops out of bed instantly and says, on his way out of the room, “Where’s your Imitrex?”  Within two minutes I have swallowed the pill and am lying down again.  I am slightly worried that I’ve caught it too late and the Imitrex won’t work.  It mostly does, though my two hour nap turns into a four-hour nap.

I spent much of yesterday depressed, which was odd, considering that both the RHB and I noticed that I started the day remarkably cheerful for someone who had risen two and a half hours earlier than usual.  Instead of my usual 9 hours of sleep, I got about 7.  You’d think that wouldn’t be enough to trigger a migraine, but …

There are certainly things about the migraine to cause real emotional reactions – I’m sad because I’m ill, and it’s recurring 3 to 5 times a month now.  I’m sad because my day gets wasted – even if the Imitrex gets rid of the worst physical symptoms, I still feel pretty crappy.  I’m sad because the RHB has to put up with this.  I’m sad because I don’t fancy myself an invalid, and yet here I am, spending several days a month in bed, or at least functioning poorly.

But sometimes I think that depression is a symptom of migraine.

Other odd phenomena that I think might be related to migraine, though I’ve never seen them listed anywhere else

• Increased urination
• A weird cross between nausea and extreme hunger (OK, I think Oliver Sacks does note overeating as part of the prodrome, but I’ve never seen it listed as a symptom of migraine itself).
• Sinus pain

Also apparently unrelated causally, I’ve been having blurred vision which is much worse in the morning.  This happens virtually every day, regardless of whether it’s a migraine day.  Time to see a good ophthalmologist.

Oddly, while I was in DC, two of the RHB’s friends provided a little insight that I found hopeful.  I intended that my next Migraineur blog entry would express some of the hope I felt from talking with other people.  So here goes:

The wife of one of his friends told me about her experience of migraines (she is blissfully, and luckily, mostly free of them now) and noted that Imitrex comes in inhaled and injected versions as well.  I plan to ask either my doctor or a specialist about whether either of these might do a better job of blasting away the aura, which is the most debilitating part of the migraine.

One of his other friends, who is a Verifiable Mad Scientist (VMS) (“I insert electrodes into rats’ brains and try to determine what they are going to do next”) mentioned that he spends a day in one of his courses teaching about migraines and promised to send me a bunch of studies about migraines.

Finally, VMS mentioned that I really should read Oliver Sachs’s Migraine.  I bought the book several years ago, during my long migraine intermission, when I had been reading Sachs’s more pop-sci work.  I had some interest in migraine from my experience of it in my teen years, but the book was not then what I was looking for.  I picked it up this morning and decided that, although Sachs uses more scientific language and is more thorough and comprehensive, he is still Sachs.  That is, he is still concerned with the role that illness plays in people’s lives.  And this, I think, is what I need now – a medical professional who realizes that illnesses are human phenomena, not disembodied conditions or laboratory conditions.

Loneliness

Today, 11:00 am nearly on the dot.  Migraine.  Aura started, as always, as a slight blur near the center of my visual field, akin to the distortion you might see if a small rock dinged your windshield.  Was working with a co-worker in New Jersey to troubleshoot an issue, discussing in IRC.  Gulped down an Imitrex, after the usual struggle to get the damn thing out of the package (the person who designed this package has clearly never had a migraine).  Posted a couple of notes in IRC about what was going on, turned off lights, folded up the small blanket I keep in my office for the summer refrigeration (er, air conditioning) season, and put my head down.  In a half hour, I was downstairs ordering lunch and feeling, not well exactly, but over the most debilitating symptom, the migraine aura.  And in another hour after that, I was able to function almost normally, provided I kept the lighting low and closed my door against ambient noise.

Those are the facts.  They are remarkably similar to the other 19 migraines I’ve had since their re-onset in November.  What I want to talk about today is how I felt, not physically but emotionally.

As I sat with my head on my desk, a wave of loneliness and despair broke over me.  Despair, because I have thus far failed to identify a trigger.  I gave up red wine for 6 weeks, and still had migraines.  I gave up artificial sweeteners for a month, and still had migraines.  I seldom eat nitrate-cured meats; my consumption of aged cheeses is small; and I avoid MSG like leprosy.  I am still getting three migraines a month.  There seems to be some small connection between skipping meals and poor sleep, but it’s a tenuous connection – I ate and slept fine yesterday.  The magnesium and riboflavin supplements seem to have done no good.  The MRI and the CT scan revealed nothing.  I have a followup appointment in two weeks, and I plan to ask for a referral to a neurologist.  But I am not hopeful.  There just doesn’t seem to be any universally effective treatment for this condition.

One aspect of this hopelessness is my utter bafflement of why?  Why after 19 years did my migraines reappear out of the blue?  My doctor seems uninterested in this question, beyond using the imaging tests to confirm that there are no brain lesions or tumors, but to me this is the most interesting and relevant question.  Because if I knew the cause, perhaps I could do something about it.  Or maybe I mean if I knew what made them go way 19 years ago, I could, you know, make them go away again.

As for the loneliness, well – imagine yourself in an office and suddenly you cannot see well enough to use your computer or read any papers.  You are in the middle of a conversation (in person, telephone, or virtual) and have to cut it short abruptly.  All you can bear to do is screen out as many stimuli as possible and tough it out while you wait for the medication to kick in, and the medication has never, ever gotten rid of the aura any faster than the aura would go away by itself.  In the meantime, you feel frankly rotten and want someone to feel sorry for you.  But who will feel sorry for you?  The world of work goes on, as the world of work always does.  Maybe the person you were talking to when the headache comes on feels some slight sympathy.  Maybe somebody will pass by your office, see through the window that your light is off and your head is down, and will express some concern.  But maybe they will just think you are shirking.  Plus, because you have three of these things a month, mercifully not ALL during business hours, you figure that the folks who know about your migraines are sick of hearing about it.  On top of everything else, you are thinking of the extremely important meetings you have today, plus all the personal odds and ends you hoped to accomplish in between, and how much you just want to go home, if you could somehow get home without going into the bright sunshine first.

At the moment you feel as sick as you think anyone with a terminal illness could possibly feel (though you recognize that just yesterday you felt fine and tomorrow you’ll probably feel fine again and if not tomorrow then certainly the day after, and later, when the meds kick in, you will think it’s possible that you were exaggerating a teensy bit), and you’re all alone and it would be completely inappropriate to ask for attention from the people around you.  So you wait for the Imitrex to kick in and you wonder if the vending machine has any ginger ale for the nausea, and eventually you ping your spouse, who can’t help you either, but at least he’s your spouse and made that in-sickness-and-in-health vow and therefore has some responsibility to listen.  Because, oh baby, is this sickness or what!

The Migraineur Is Open for Business

After over 19 migraine-free years, I have started suffering from them again.  And what a resurgence!  When I was a teenager, I had about three migraines (with aura) every spring and summer, and then they were over until the next year.  My last migraine was during the summer of 1987, right before I started St. John’s.  I don’t think this is insignificant, given how terrible my teens were and the promise, largely fulfilled, of St. John’s as a better place.

On November 25, 2006, I experienced a slight disturbance of vision that I attributed to having glanced into the sun.  I went about my Saturday errands, walked over to the Post Office, bought some stamps, and as I walked back home realized that no sunspot would last 15 minutes.  Remembering that my friend J. used to say that caffeine helped a migraine, I stopped at Diesel on my way home, bought a double expresso, drank it in a gulp, and went straight home and went to bed, stopping only to tell the Red-Haired Boy, “I believe I have a migraine.  Please don’t make any noise.”

When I woke up, I felt better, but my head was sore when I bent over.

Thus began my adult journey into the world of migraines.

In spite of all efforts at prevention, thoughts about triggers, attempts to eat and sleep regularly, a great reduction of stress on my job, supplementation with magnesium and riboflavin, I am still having three migraines a month.  And even the abortive drug of choice, Imitrex, only works sometimes.  Plus it’s useless if I don’t take it at the first sign of a migraine, the first inkling that my vision is disturbed, and I am beginning to think that if the Imitrex doesn’t get rid of the migraine, it actually makes it worse.

I am starting this journal as therapy for myself and to help others.  But being sick, really sick, 3 or 4 days a month has also led me to contemplate the nature of health and illness.  Migraine is well suited to these kinds of musings, since it is a fully, but temporarily, debilitating condition punctuated by periods of good health.  A migraineur, then, has insight into both worlds.

I invite comments, but do screen them for spam.