Migraine: Chapter 57 (and counting)

Pardon me while I bitch. This is not a political rant. This has nothing to do with social justice or a better word for humanity. This rant is all about me me me. So, if you aren’t interested in the self-absorbed ravings of a cranky middle-aged white woman, this post is not for you. Frankly, I can’t imagine that anyone would be interested, but it’s cathartic to write it out, so here goes:

I am sick of waking up every morning with a migraine. Today is day 57. Consecutive day 57 with no break. Every day between 4 a.m. and 6:30 a.m. I wake with a pounding skull.

Sure, the drugs usually knock it out, but it takes at least an hour for them to work – if they work – and they work best if I go back to sleep for at least 30 minutes while they’re taking effect. Since I can’t go to sleep on command, especially with a jackhammer or icepick working my skull, it’s not like I can set an alarm – half the time I wake up two hours later. This is really cutting into my day and what little productivity I can actually eke out between browsing Reddit and clicking links on Facebook. (Which, of course, are the prime reasons to get out of bed to begin with, right? Except I have a laptop and an iPad, not to mention a phone, so I could do that from under the covers…)

I have a job – although I’m self-employed because who would hire someone with more sick days than good days? I volunteer. I have clients and people and organizations I’ve made commitments to, and it’s getting harder and harder to meet those commitments. I only take cases without crushing deadlines.

I make those commitments because I care passionately about the world I live in, and I want to make it better. That’s why I became a lawyer to begin with – to help improve the world. It’s why I volunteer with some of the organizations I volunteer with. (I volunteer with the others just because I love history.)

Some days I can’t get out of bed. Some days I have to stay under the covers in a dark room with my handy barf bowl within reach. Sometimes I have multiple days in a row like that.

Life with Migraine

I’ve had migraines all my life. I was diagnosed in fourth grade when my mother and teacher became concerned. My vision faded and blurred during class when I had tremendous, pounding headaches. The really bad headaches came only occasionally,  usually just three or four times a year. I had smaller ones frequently, though. The pace of my most severe headaches increased as I got older. I’d have bad ones as often as six or eight times a year throughout the decade of my 20s. I had a small sofa in my office so that when they hit, I could take a nap until the painkillers worked. Back then, there were no such things as triptans, and I didn’t want to go home if I could possibly remain functional. I had too much to do. Over-the-counter medications had virtually no impact. I tried them all. The only things that got rid of the worst headaches were narcotics, sleep, and time.

Three or four times a year, only time cured them. I would spend two or three days in blinding pain, vomit uncontrollably, and long for something as soft as it was cool. My pillow was too hard. Rolling over in bed meant torpedoes homed in on my cranium, unleashing their fury. But these bad headaches only happened three or four times a year. They were definitely inconvenient, but I could deal with them.

The Tipping Point

In 1997 I was in an auto accident that resulted in severe whiplash. Within a year, I was having severe headaches weekly. Then the time between headaches narrowed to the point that I would have only three or four days between attacks. The attacks themselves lasted two or three days.

I had a client who was a doctor. “Is this stress-related?” I asked him one day. “Probably,” he answered, and wrote me a prescription for a tranquilizer. It didn’t help, except to help me sleep when the headaches came.

I went to a clinic that specialized in headaches. “Live with it,” the neurologist there told me. “There’s nothing we can do but manage the pain, and we’ll do that without painkilling narcotics.”

How do you “manage” pain if there’s no way to treat the underlying cause and painkillers aren’t an option? I didn’t go back.

When one migraine had already lasted for two days and I couldn’t stop throwing up, my husband took me to my regular doctor. They gave me shot of Imitrex. It didn’t work. “It’s not a migraine if Imitrex doesn’t work,” I was told. It was bad information, but that was typical of what I had already encountered. Even the doctors had no clue.

Finally, a friend of my sister’s who worked in the ER of a teaching university got me in to see one of the top neurologists at the medical school. I met Lee Archer. He is not just my doctor; over the last 15 years, he has become my friend.

The first thing he did was prescribe Imitrex. I told him about the time I was given a shot of it that didn’t work. He shrugged. “If you wait too long, and if the headache is too far progressed, you really do have to ride it out,” he told me. “Take the pills when you sense the aura, or, if there’s no aura, as soon as you feel it coming on.”

Imitrex is a miracle drug.

I don’t mean “miracle” in the sense that it has supernatural, non-understandable properties. I mean that it really does stop a migraine in its tracks, and it does so without significant side effects. Imitrex gave me a semblance of a life back. That, to me, is miraculous. I don’t know who stumbled upon the formula for Imitrex, or who found that it worked for migraines, but they are a hero.

But the headaches still came too often – I was limited by insurance to nine of these precious doses a month. Since some headaches required two doses, we had to find some way to prevent them from happening as frequently.

I’ve tried every prophylactic out there over the last 15 years, from beta-blockers to botox to butterbur. (That’s just some stuff I’ve tried that starts with B. I’ve been through the rest of the alphabet, too, including A, which included acupuncture, which … don’t even ask. Yes, I am desperate enough to try powdered horn of tiger testicle at this point if some witch doctor hints to me that it might work.)

Add to that, I saw a Huffington Post report a couple of days ago that included an appearance by the mother of Melissa Dwyer, a 22-year-old with daily migraines who finally killed herself this past summer because she could get no relief from any medications anymore. At 22, her life was effectively over, so she ended it. I understand it, but I don’t have to like it.

When the last of the meds stop working, I won’t have any desire to continue living in constant debilitating pain, either. What will be the point? I will be of no use to anyone, and I will have no quality of life. Already I can’t take care of myself when the headaches are bad. I don’t know that I could get out of a burning house, or even dial 911 and coherently ask for help. My migraines are often accompanied by transient aphasia. Yes. Me. A woman who talks and writes and wields words for her vocation and her avocation has aphasia. The worse the headache, the worse the aphasia.

I long ago passed the tipping point. Since 1997 I have had more migraine days than pain-free days. That’s 16 years.

When I don’t feel well, I get cranky. I avoid people because I know how miserable it is to be around me. Just ask Jane. She was my paralegal for more than 15 years, and she’s still my best friend. She has seen me deteriorate over the last (almost) 20 years. She’s seen me fall into a deep depression and she’s been there to cover my ass and to prop me up when things have been worst. No one else has ever done for me what she has – not anyone in my family and not any other friends. Now that we aren’t working together I miss her tremendously. Without her, I’ll be dead, and the cats will have picked my bones clean a month before anyone discovers my body.

Plus, I’m an organ donor, dammit; suicide’s just not an option under these circumstances.

Prior to finding my current neurologist in the late 1990s, relief only came from narcotics and Phenergan, both of which are still in my diminishing chemical arsenal – diminishing, because after a while, drugs just stop working and for some insane reason doctors just won’t increase the dosage to toxic or lethal levels.  (I know. I don’t understand, either. If Westley could develop an immunity to iocane powder, then surely by now I am immune to poppies.) The neurologists before my present one told me I’d just have to live with the headaches and good luck with that.

There is nothing worse than a doctor giving up on you – and telling you to give up, too.

Lawyering with Migraines

I’ve quit practicing law twice, the first time in 2001. The headaches were awful then, but I had enough of a financial cushion that when Jane’s son was born we decided to scale back the law practice and work from home, only taking the cases we really wanted. That was a good decision, but significant necessary cost overruns on a home remodel coupled with the financial crisis in 2008 torpedoed my portfolio. I no longer had a choice, so I went back to work full-time.

I quickly realized I wasn’t up for extended litigation or stressful cases. Despite that, the following year I foolishly created a law firm with two other lawyers. By the fall of 2010, I had to completely stop going to court on contested cases. I couldn’t – and still can’t – reliably know if I’ll be able to function well enough to advocate for a client, and the anxiety over being able to function is as debilitating as the migraines themselves. I didn’t tell my law partners. I was afraid to. I just got our associate to go to court with or for me when I couldn’t settle a case to a client’s satisfaction. I called it “training.”

Did I mention that depression and anxiety are byproducts of chronic migraines? Depression is crippling. Anxiety is eviscerating. Of the two, my anxiety is far worse.

Here’s a fun fact: migraines exacerbate anxiety, which in turn exacerbates migraines. It’s a never-ending feedback loop that intensifies with each completed circuit, and at some point should equal and then exceed the electromagnetic strength of CERN’s Large Hadron Collider, at which time I expect a black hole of misery to singularity itself into existence. Maybe a new boson will be discovered when the whole thing implodes. Let’s hope so, for science.

Here’s another fun fact: in the throes of a migraine, movement hurts. Every doctor I’ve ever been to tells me to exercise. Sometimes I can’t even turn my head without feeling the whole world ripple, and they want me to exercise. I tried. I paid a personal trainer for several years. Cardio workouts invariably gave me a headache. If I was using enough weight in resistance exercises to do me any good, the effort made the blood pound in my brain. I did it as long as I could, and finally, I gave up. Some days I can’t even walk up the stairs in my own house. It’s not my knees or my back that object – although they do. It’s my throbbing head. That much effort is just beyond me some days. Sometimes just walking across the room takes herculean effort.

Crisis

In the summer of 2011, things fell completely apart. There were damaging forces undermining me other than my deteriorating health, although I wouldn’t know that for another six months. I kept trying, like Sisyphus with that impossible boulder, not knowing that those other elements were working against me. I knew about the health issues and knew I was pushing that rock uphill. I just didn’t know that there was no way ever to get the rock to the top.

The feedback loop grew worse. I was working eighteen-hour days and accomplishing virtually nothing. I couldn’t sleep, because the lack of accomplishment made me extra anxious. I was at the office before 7 a.m. Except on nights when Socrates Cafe met, I didn’t leave until after 10 p.m. and often didn’t leave until after midnight. Even on weekends.

The lack of sleep showed in the quality of my work, and in my ability to work. I fell asleep during meetings. I fell asleep during telephone conversations at the office. I fell asleep mid-sentence, then would wake with a jerk. And the migraines just got worse. Instead of taking me off them, when I complained to my doctor that one of my six daily meds for migraine/depression/anxiety was contributing to the lack of sleep, he actually increased the dose. I stopped sleeping at all except for an hour or two a night when I would doze fitfully as I lay, frustrated at my inability to really sleep, in my bed. Night lasted forever, every single night.

Guess what happens when someone doesn’t sleep? Well, when a migraineur doesn’t sleep, her migraines get worse. I was giving myself shots of Imitrex at least once a week, and saving the shots for only the worst of the headaches. The worst came that often. And when anyone doesn’t sleep for a long enough period of time, she starts hallucinating. “Long enough” in this context was just a few weeks – at least, that’s when it finally dawned on me that shit was seriously fucked up.

My hallucinations weren’t the surreal technicolor movie we’ve been told happens with psychedelic drugs. They were subtle. Out of the corner of my eye, I’d see a shadow. It was a beaver-shaped shadow, maybe a nutria or groundhog. It sat on its hind legs and teased me from the periphery of my vision. I knew it wasn’t there, I knew it wasn’t real, but I kept seeing it. After a couple of weeks of this, it was joined by a crab-walking kind of prehistoric hominid figure.

The paleo-geek in me wanted nothing more than to get a really good look at this new creature. I knew it existed only as a result of sleep deprivation. I knew full well it wasn’t really there. Intellectually, I knew I was hallucinating. But the opportunity to observe an ancient hominid was about the coolest thing ever. Frustratingly, he stayed just in the corner of my vision, too, so I couldn’t get a good look at him. When I tried to look directly at any of these nutria or hominid-shaped shadows, they’d skate even further to the periphery, or they’d disappear entirely.

These critters never darted in front of me, they never stood where I could take a good, long look at them, and they were never more than shadows. This went on for about two months.

I finally gave up when things at work got so bad that I missed the third paycheck in a row. For about a year my paychecks had been spotty, and as a result, my finances were in a disastrous state. I had humbled myself to ask for help from my mother – at 49 I felt like a complete failure asking my mother for money. I was working 18-hour days, migraining almost constantly, not sleeping, seeing shadows that I knew weren’t there, and I couldn’t pay my mortgage. I was in a constant and frantic state of panic about money. And in early September 2011, the bottom officially fell out.

Without a bottom, there’s no limit to how far one can fall.

In early September 2011, I had my first panic attack. It was the first of many to come. Very few people knew that, and of those who did, none cared. They thought I was being silly. Heart palpitations, escalating circular thoughts spiraling upward in intensity, cold sweats, shortness of breath, and the inability to stop crying are not silly histrionics. No one chooses to experience these things, and no one wants to experience them in public. Certainly, I did not want to experience them in front of people who looked at me with narrowed eyes and a curtly dismissive attitude.

They told me to stop crying all the damn time. They wanted me to get over it, whatever “it” was.

I didn’t have these attacks because I wanted attention. I wanted anything but the attention they garnered me. I wanted to be able to interact normally. I wanted to laugh. I wanted to enjoy life. I wanted to enjoy my son’s company, revel in my nephew’s accomplishments, and interact with members of my family normally.

I wanted to stop crying all the damn time.

I would have if I could have.

Mental health crises are very poorly understood by most people in general. Someone having a “nervous breakdown” is scary to those who see it. It’s not nearly as scary to them as it is to the person experiencing it, though.

I went into an intensive therapy program. My family supported me going into therapy but had the impression that when the intense program was over, I’d be “fixed,” back to being the old me, and things would return to normal. They had absolutely no appreciation for how hard it was just to get up in the morning – not because I was depressed, but because I was sick.

Practicing law full-time was off the table, so I needed to create an entirely new career for myself out of thin air. And this new career, whatever it might be, had to provide me with enough income to be able to support myself while allowing me the luxury of having chronic, debilitating, disabling migraines more days than not. This crisis was a crisis of physical and mental health, sure, but there was a hell of a lot more to it.

For more than a month, the migraines grew measurably worse. I had to have shots of Imitrex every day for four solid weeks. I dropped everything: work, the activities I enjoyed, the friends I had, and even Socrates Cafe, which was by then the only thing I still did for pleasure.

I didn’t recognize myself anymore. I used to be competent, intelligent, organized, articulate, practical, strong, and forthright. A driving force. A hard worker. Diligent. Steadfast. Calm. I had never become part of any organization that didn’t then make me its leader. Sure, I procrastinated a lot, but I got stuff done. Now? Now I was a shell. I was fragile and tender. I couldn’t hold a thought in my head.

My family usually saw me in tears when they saw me at all, which was rarely. They were disgusted with me. They had absolutely no understanding of what was happening to me physically, fiscally, emotionally, or psychologically. They treated me like I was an addict who just needed to get my shit together. Tough love would take care of the problem I had become. In fact, they used the same methods and phrases on me that families of addicts are taught to use with their addicted loved ones. (There are addicts in my family, but I’m not one of them except when it comes to complex carbohydrates.)

Their criticism and their judgment and their lack of sympathy cut me to my core. They never asked how I was doing. They ignored me except when I had to reach out to them because I needed something from them I couldn’t get elsewhere.

I’ve always had social anxiety, but it was a lot worse during this period. They were completely clueless, and I knew of no way to clue them in. I doubt they even wanted to be clued in. As best I could tell, they believed they knew what was going on with me. I just needed more therapy. I just had to pull myself up by my bootstraps, after first designing the bootstraps and attaching them to my heels, of course.

When one has to put one’s face deep into quicksand to even figure out if there are bootstraps hidden somewhere down there to tug on, such an attitude from the people we need support from is hardly “supportive.” Furthermore, I didn’t need talk therapy. I needed practical solutions to very concrete problems, and I was fresh out of ideas. I needed a plan. I was expected to come up with it on my own, out of thin air. I couldn’t possibly do that, in the midst of a crisis and alone.

I had never worried much about other people’s opinions of me, but suddenly I was acutely aware:

I had been weighed. I had been measured. And I had been found wanting.

When the people I needed support from the most made it clear that they were not sympathetic, the impact hit me as forcefully as Ademar’s fist hit William’s gut.

I reached for someone, anyone, who might be. One couple who I had considered to be close friends reacted awkwardly when I told them what was happening. They backed away nervously, and our friendship never recovered. Another friend was sympathetic but had problems of their own. Another wanted to be supportive, but our relationship had never been one of sharing intensely personal stuff, so I dropped it. It just didn’t feel right. (In mid-November 2011, at Skepticon IV, that friend and I sat next to each other in the second row with tears streaming down our faces as we listened to JT Eberhard talk about his own breakdown. JT’s words didn’t just hit close to home, they bombed me like a Blitz.) Another friend I reached out to told me that they’d been there and done that, lost everything, and moved on. I felt guilty burdening them when I couldn’t figure out how to move on.

In the summer of 2011, an old romance started to flare back up when an ex-boyfriend and I encountered each other at Socrates Cafe. We didn’t see each other daily but talked regularly. During the period of intensive therapy, he was the only person who made sure to talk to me every day to check on me. He had a crisis of another nature during that time, though. He hung on gamely until Thanksgiving, at which point it was way beyond time for me to give him permission to say goodbye. He was a champ as long as he could be, and loyal to his own detriment. He was the only unselfishly supportive voice that spoke to me regularly and consistently during the worst of that time, and I will forever be grateful to him for that. Once we said goodbye, I had no one.

I was afraid of being isolated, but I was more afraid that I would spiral downward emotionally if I didn’t interact with people. I made an effort to reclaim the positive parts of my life. Things still weren’t good, by a long shot. I had days at a time when I could not make myself get out of bed. There was no one there to care. I stopped trying to make meals. I didn’t have the energy to plan and cook them. There was no pleasure in the effort – and I used to love kitchen chemistry. I gave up on dating. Sharing the mess I had become with someone else would not be fair, right, or kind. It certainly wouldn’t be loving.

For the next nine months, I had no bottom. There was no light to show me how I might get out of the situation I was in. My ragged fingernails clung to a single strand of rope that barely held me above a yawning chasm. It was a very spongy and porous rope that sometimes dissipated almost entirely. Mostly I dangled from it, but occasionally, on rare good days, I was able to climb up and stand on it like a tightrope walker. Standing on it and stretching, I couldn’t reach up far enough to grasp the edges of the bottom I knew had to be somewhere above me. But the source that provided the tightrope regularly threatened to take even that away. Despair consumed me. I made futile stabs at reorganizing my life, none of which were realistic given my limitations and my needs. I had no hope.

Deus ex machina.

A year after that day in September, a light finally broke through. I looked up. There was an end in sight to at least part of my problems. I suddenly had something I could sell to ease the financial stress, and then, with that part of the burden lifted, I could focus on healing. The migraines didn’t go away, but the rope I was dangling from slowly started rising. The pain-free days started looking a little brighter.

In December 2012, things got measurably better. I closed on the sale of two investments, which finally allowed me to breathe financially. I now have a bottom, and instead of it being somewhere over my head in the ether, I’m at least sitting on it. I can touch it. Of course, December 2012 was when I was held at gunpoint for half an hour in my own bedroom, so there’s that.

Finding that bottom made things better. I still have days at a time when I can’t get out of bed. I rarely cook. I still can’t imagine anyone being willing to share their life with me. Some days I still can’t think straight. It’s as though someone has played a bad game of golf in my head and left gaping divots where important parts of my brain should be. I feel the bruises from the ricocheting balls.

Unless it’s so bad I can’t get out of bed, even when I have a migraine I force myself to get out of the house to do the things I still can. The two hours a week spent at Socrates Cafe is still my favorite activity, but more and more often those two hours are more than I can handle. I go to gatherings with my friends and drink soda water because alcohol triggers migraines. (Hell, everything triggers migraines.)  I host parties because I can’t drive with a migraine. More than a few of those parties have lasted longer than I needed them to, and seeing the last guest leave has been a relief. I don’t want anyone to know when that happens.

I hide my headaches from other people. Only a few people know that I have them so often. I doubt most have any idea that I’m often on painkillers when they see me. Instead of incapacitating me, like narcotics tend to do to people who don’t have to take them often, they are what allow me to function. I don’t take them freely; I hoard them and dole them out stingily to myself. I am not addicted, but I do rely on them. Thankfully, because of the reduced financial stress, I have to rely on them less and less.

Life is not done with me. I have things I want to do. I have goals and plans and projects and ideas. I have books to write, things to make, places to go, dreams to fulfill, and things to build. I have a son I adore, even if he doesn’t need me as much as he did when he was a kid. I have a dream that I might even, someday, have a man to share my life with. That’s probably a pipe dream, but every once in a while I take that dream out and fondle it so that I remember how.

Working full-time isn’t an option. I used to think I didn’t need disability insurance – even a blind lawyer can dictate contracts, right? Before I was 35, I never imagined that any health problem would prevent me from earning a living on a long-term basis. Now I know differently.

In a fit of hope, I bought a bike. I can glide when the pace gets too rough, right? Take things slowly and coast. Except, every time I’ve ridden the damn thing, I’ve ended up out of commission for at least a day. I still can’t exercise. Migraines still rule me.

Last Updated on October 16, 2024 by