The Migraine Chronicles

At 6:15 p.m. this evening I had my first classic aura “experience.” 

No real warning, unless you count the relentless ringing in my right ear or the disconcerting feeling of driving through an ever-narrowing tunnel on my way home. 

Shortly after arriving home I situated myself on the bed, hoping a little rest would ease my pain and allow the rest of the evening to flow smoothly. It is, after all, Friday night, and I owe it to my S.O. to be full of cheer - to be “on,” as they say - to show him a little fun. 

Within just a few moments, I noticed two slightly off center, not quite circular pink dots following my trail of vision. The ringing in my ears grew louder as the dots grew larger, then smaller - brighter, and then less intense in color. Then, in one shot they scattered across the ceiling in a burst of tiny, little dots and disappeared from view. 

Immediately following the pink dots was a phenomenon I’ve only seen in Disney movies. My eyes started pulsating in time with my headache and the ceiling and walls (along with the pictures, fan, and everything else in sight) began to move along with the beat. Bump . . . BUmp . . . .BUMp . . . .BUMP. . . . Not content to move strictly up and down - the ceiling began spinning, slowly, in time with the beating. 

Just as quickly as it began - it stopped. Only to be replaced with a spiraling black and white snake in the corner of my right eye. Just as it reached the center of my field of vision - it vanished. 

All of this took no more than five to ten minutes at most. Another ten minutes and the pain became more severe. 

Ah, it’s a good thing I read! This time, I really would have thought I’d lost my mind.

Living with a persistent throb becomes easier with time. It hurts more some days - less others - but it becomes easier to ignore as the days go by. The persistent, yet rather dull (2.5 on a good day, 3.5 on a not-so-good) throb is easy. The sound of pulsating blood even begins to feel a little comforting after a while. Though annoying, the persistency I can handle - it’s the spikes that get me.

When they’re short, steady, or slow; I can manage. Armed with my mixture of peppermint and lavender oil and some deep, yoga inhale/exhale style breathing, the peak of migraine fury will only throw me off a few mere moments.

But, when they show up like a cheshire cat carrying a bag of tricks containing dizzy spells, sliding ceilings, hot flashes, ice pick stabs of severe pain, odd smells, baskets that grow disproportional sides, and strange sensations of being larger than the houses one is driving past - I must admit my small arsenal is no match.

Luckily, this not only severe but also makes-you-wonder-if-you’re-nuts type of pain has lessened due to my medication. Rather than three or four times a day, I only see the Cheshire Cat about 5 or 6 times a week. That’s progress.

I did, however, find myself standing over the bathroom sink this morning asking myself if I had already brushed my teeth. Now, that, my friends, is Topamax.

A new study released yesterday in an issue of Neurology states that people with higher blood pressure may be up to 40% less likely to suffer from both migraines and headaches. Apparently the “stiff arteries associated with high blood pressure” may decrease the risk of head pain. http://www.sciencedaily.com/releases/2008/04/080414161552.htm

As a person with (typically) below average blood pressure, I find this interesting.

Just yesterday, I was voicing my concern to my S.O. about my ever-increasing blood pressure. Since beginning my migraine drug cocktail three weeks ago, my blood pressure has steadily risen from 102 over 60 to 120 over 70 to 125 over 82.

Perhaps this means my body is trying to make this medication work for it. Perhaps it means something serious. After all - one risk factor for stroke shouldn’t be traded for another.

Of course, there is evidence that any kind of pain - and particularly one as excruciating as migraine pain - can spike a blood pressure reading.

http://www.healthcentral.com/high-blood-pressure/question-answer-27970-63.html

While my daily, unrelenting head pain seems to have let up from a constant 4 to more of a steady 2.5 - 3.5, the spikes of pulsating, drilling agony seem to have increased in intensity from a 5 to anywhere between a 6 and 7.5. Perhaps this, too, and not just the medications, may have some part to play in the increased blood pressure.

After a day full of drugs: a (second) 500mg I.V. of Depacon coupled with a 60mg I.M. shot of Toradol and a 12.5mg dose of Phenergan to top it off; I begin to feel a little better.

This morning was the morning to increase my Topamax to 50mg per day. And, though I awoke with an instant pain of around a five on a ten-point scale, it is now 3 hours later and the pain has tapered down to a persistant and throbbing - but dull - 2.5.

While this could very well be the result of my morning cup of tea - caffeine has some instant (though fleeting) pain relieving effects - I’m hopeful.

At 3 p.m. yesterday, my neurologist’s office called. “Are you close enough to make it in by 3:45?” I hung up, shut down my computer, and left work.

The Frova hadn’t worked. 10 pills down and no relief. Not even a little, not slightly, none - at all. As I had now had this particular migraine for at least five days straight (don’t ask when it began - for some reason, pain is often difficult to pinpoint its beginnings,) it was decided I needed an IV to abort it quickly.

After being pumped full of enough liquid to bathe a baby in, I was told to lie still for five minutes. “It should kick in within thirty minutes to an hour,” said the P.A. “Go home, take 25mg of Phenergan, and get some rest.”

“Should I take my next scheduled dose of Frova?” I asked.

“Yes. Go ahead and take three Advil with it, too.”

Just as she closed the door, she stopped. “Oh, one last thing. Make an appointment for another injection tomorrow. This doesn’t have a very long half-life and you’re probably going to need at least one more.”

Five minutes passed. I made an appointment for two days later for a second injection (I do have to work - I can’t spend all my time in doctors’s offices) and went home with high hopes that maybe the pain would finally stop - even, if only for a little while.

Ah, optimism. So useful in keeping us going and yet so often disappointing. Granted, I didn’t take the Advil - I figured one more medication couldn’t possibly be all that helpful at anything other than giving me an ulcer - but I did take the Phenergan and the Frova.

The pain didn’t stop. It didn’t even loosen its grasp.

Though my wish was not granted, the weekend went well. For the first time in four weeks, I found enough energy to get up and run Saturday morning. Three miles - felt like the hardest thing I’ve ever done. Stomach churning, head pounding . . . but I did it.

Afterward, the pain came in rushing waves - breaking, one on top of the other, until finally it dulled to a persistant knocking.

Sitting, staring at this bottle of pills, I am terrified. Afraid of what this next dose will do. Frightened of who I may become; of all the things I may lose.

What will become of my relationship if one of my most essential characteristics melts away? If I am no longer a woman capable of grasping the truly important things, if I, instead, begin to fret and fight about the little shit that no one cares about - if I jump at every opportunity to snap - if I bitch and moan - if I throw things - my relationship will not survive. 

I am his complement because I do not do these things. Because I take life lightly. With joy and empathy. Without anger, without complaint. In ecstasy. What will happen to me, to us, if this medication makes me lose that? 

And, writing. What of that? I am a writer. I spend a vast portion of my time immersed in words - writing, editing, reading. Losing my ability to concentrate long enough to finish a thought, to find a word, to remember yesterday - these things are not acceptable, not tolerable, not an option. 

I’ve been warned the relief will not be absolute. The pain will still come - often, probably, though less than before. It may hurt less, it could hurt more, but it will still come. Eventually the medicine, even if it works, will stop working and I’ll have to find another temporary patch. Is all of this worth it? Can I bear the pain? Should I?

Ahh, this vulnerability, hurt, confusion, and lack of assurance are so unlike me. 

I have a wedding to go to tomorrow. All I ask is a day of no pain, no side effects, no complaints. Can such a wish be granted?

I took my first dose of meds last night. 2.5mg Frova and 25mg Topamax. For the first hour or so, all was well. Then, out of nowhere - things got weird.

Over the course of about five minutes, I went from being cuddly and loving with my boyfriend to being irritated every time he touched me. At first, I didn’t think much of this as I’m not known for being the most affectionate person in the bunch. But, when a bout of anger and frustration ended with a shout and a thrown remote - totally out of character for me - I had to take notice.

My S.O., pissed at my behavior, went to sleep in the other room. I couldn’t sleep. I felt jittery, wired but all I wanted to do was cry. Twenty minutes swept by as I sat bawling on the stairs with horrible, depressing thoughts running circles through my head. Once I finally convinced myself to get off the stairs (yes, I actually entertained the thought of sitting there, crying, until morning,) I went to bed.

Still unable to sleep, I dashed off a letter apologizing for my bizarre behavior and left it upstairs where it would be found in the morning.

Finally, about 1:30am I fell asleep.

I took another Frova this morning. Aside from a persistent headache (it isn’t helping with the migraines, yet) and a little dopey feeling, it doesn’t affect me much. Thus, last night’s behavior must be attributed to the Topamax.

Side effects mentioned in the information packet and by my Doc included: weight loss, fatigue, difficulty concentrating, numbness and tingling, and taste changes. Nothing was said about mood swings, aggression, or depression.

It wasn’t until I began researching other patients’s stories this morning, that I found out the disturbing truth. While almost all patients reported a significant decrease in migraine headaches, common serious side effects were complete loss of sex drive, aggression, severe mood swings and depression, suicidal tendencies, hair loss, and inability to sleep. None of these sounds like a good replacement for the pain of migraines.

Still - I have to wonder - could one pill have made such a drastic impression on me in such a short time?

My next dose is tonight. I’m wary but I now know what to watch for. If this continues for even just a few more nights - back to the doc I go.

Yesterday, after a month of back-and-forth with my PCP, I finally got in to see a neurologist. No surprises. Diagnosis? Migraines.

After an hour-long examination/discussion I left with prescriptions for Frova, Topamax, Axert, and Phenergan.

The first, a triptan migraine pain reliever to be taken two times a day for five days in an attempt to “break the migraine cycle.”

The second, a preventive medication originally used as an anti-epilepsy drug. 25 mg nightly for one week, then one pill twice a day, then one in the morning and two a night, working my way up to two pills twice a day. If well tolerated, the idea is to go to one 50mg pill twice daily.

Axert is another triptan migraine pain reliever. Like the Frova, it is meant to “abort” the migraine if taken within the first hour of an attack. This is to be used after the five days of Frova, if the migraines continue.

The final medicine, Phenergan, is an anti-nausea medicine. According to Dr. Howard, it is to be used “in the case of severe, incapacitating migraine.” I can only think this is due to it’s use as a sedative. Can’t beat the pain? Knock yourself out.

Armed with instructions, samples, and my prescriptions - I exit.

Disabling. Debilitiating. Severe.

 Type “migraine” into a Google search and you’ll find facts, theories, treatment options, and personal stories. What you won’t find is a cause or a cure.

Armed with a little knowledge, a lot of research, and abundant motivation - I, a migraineur, am attempting what I’m fast finding to be an almost impossible feat - finding a way to make the pain stop.

 As a tribute to Lewis Carroll, whose migraines (some think) played a role in the writing of Alice in Wonderland, I invite you to take a trip with me . . . down the rabbit hole.