I was looking at my Facebook photos today and saw one upload that dates back to the Great Headache Crisis days, and it’s actually kind of funny I think. It’s a page of notes I was taking for a history class. (Click on the images for a close-up.) The green was written on a “normal” day. The red was written two days later — the day after I began taking MS Contin (morphine) for the pain. I think you can see why after awhile of that I chose to get off of it.
It was two years ago yesterday that I finished Week One of that wonderful I-MATCH program that finally brought a gradual end to the Great Headache Crisis. I’m reasonably sure that without that program either I’d still be in pain or I’d have ended my life because of the pain.
The pain faded over the course of a few months after I completed the program, but not completely. Once in awhile the pain would return for a day or two or four, like some deadbeat cousin who keeps coming over to crash on your couch. That hasn’t happened for a long time, though; I can’t remember the last time it happened. But perhaps one day out of every three, particularly during the evenings, I would get an irritating, impossible-to-describe sensation in my head, not exactly pain but more like the ghost of it.
Taking my medicine — a combination codeine/fiornal pill — would get rid of the sensation, but I didn’t want to use the pills too often, both because of the potential of what’s called rebound headache, and because I only had so many pills. Most times I would just try to ignore it. I got pretty good at ignoring it.
But my point is that I haven’t had that strange sensation happen since at least January 21 — two weeks now. (Something unusual happened on January 21, nothing to do with headaches, but it made that day a marker for me.) That’s got to be a record.
I have no illusions. I’m pretty sure it will return. In fact today I called in for a prescription refill for the headache pills, for that eventuality. (They’re pretty good with back pain and cramps too.) But right now I’m enjoying a life free of headaches or even the reminder of headaches.
Tonight I was rereading my old blog posts written during the Great Headache Crisis, and I’m amazed that I got through it. At some points, about the only thing that was keeping me from suicide was Michael and my family and my responsibilities towards them. I don’t view surviving the GHC to be any major accomplishment. It’s a terrible situation, and you’re stuck in it, and you live or you die.
I’ll be 28 tomorrow. I’m at the age where I’m not really excited about presents anymore. I went to visit my dad yesterday and spent the night at his apartment. We went to the mall so he could buy me a present, but they’d shut down the only bookstore and it took forever to find anything I didn’t have too much of already. Finally he bought me some tank tops. The weather has been way too hot lately — we will pay for it later — and so people are still wearing tank tops, but because it is October they were on sale for only $6 each. I suppose I’ll get more gifts tomorrow, on my actual birthday.
I think I am lucky to have lived as long as I have. It’s kind of a long story, but basically, on July 17, 2007, the knowledge hit me like a bolt of lightning — that my depression was so severe it was probably going to kill me. I figured I had a year, two at the most. You might ask why I did not seek treatment at the time; well, I just didn’t think it would help. The last time I’d tried to get treatment for my depression was at college in Arkansas, and I got no help at all and the situation just got worse. (Another long story. Basically, the people I sought help from were, if not exactly incompetent, at least completely unprepared for a case as severe as mine.)
And so, in midsummer 2007, I resigned my self to my fate: I didn’t know exactly how or when, but it was likely that within the next year or two I would take my own life. I genuinely believed there was nothing I could do to prevent this. I viewed it as something that would happen TO me, like a heart attack or a stroke, and not something I would DO.
And in a sense, my premonition was correct: my mental illness, left untreated, WOULD have killed me during the specified time frame. In late June/early July 2008 (that is to say less than a year after I realized how serious the situation was), I had a proper nervous breakdown. I became to all intents a corpse, shuffling zombie-like, talking very slowly and in whispers, staring at the floor, etc. I desperately wanted to die, more than I ever had before in my life. If I hadn’t been hospitalized then, I would not be here right now. And only then did I start to climb out of the pit. It was an arduous journey and a few times I slipped and slid back into the dark, but now I’ve “made it” so to speak: my mental illness is being adequately treated and I’m functioning at a much higher level than before.
I only wish it had happened sooner. I look back at that time before, all those years of unnecessary suffering, and I think about what might have been, and I get angry. But I try not to think about it because there’s no use in getting upset over something you can do nothing about.
I’m VERY glad my mental health was kept more or less under control during the Great Headache Crisis of 2010-2012. I don’t think I could have handled the double burden of depression plus severe and unexplained chronic pain. To let you all know how bad the depression was: given a choice between my depression and that unrelenting, horrific headache, I would have chosen the headache without even thinking about it. Horrible as my physical pain was during that year-and-a-half headache, my emotional pain from before had been worse. Although I admit, sometimes the one could not be separated from the other.
Although some people may hold my depression and other health problems against me, I think being frank about them is more beneficial than not, both for me and for others. I’m just doing my part in trying to rub out the stigma associated with mental illness.
So here I am — twenty-eight, when I didn’t expect to see twenty-three. And I am glad of it.
The other day I injured my foot, ripping the nail clean off one of my toes. It didn’t really hurt at all at the time — gotta love those endorphins — but that night, in the wee hours of the morning, the pain woke me up. If my toe had had a mouth it would have been screaming.
I limped into the bathroom and took an aspirin, then returned to bed, but my foot hurt too badly for me to just go back to sleep. I went into the kitchen and got a bag of frozen French fries out of the freezer, then sat down on the living room couch and put the bag on top of my foot. And sat there, waiting for my foot to get numb, waiting for the pill to kick in, clenching my teeth to keep from crying out. I was in serious pain, I’m telling you.
Then it occurred to me: I endured pain like that for fifteen months. FIFTEEN MONTHS, walking around all day feeling like that all the bloody time. And now, experiencing that level of misery again, I couldn’t understand how I made it through.
Eventually, of course, the aspirin started working and I put the French fries back and returned to bed. But this incident reminds me yet again how wonderful it is that the Great Headache Crisis is over, and how awesome the Cleveland Clinic is. I love you guys!
Since last summer I’ve been following the blog of Rob Gorski, who has an ailing wife and three autistic sons. Their life is hard, to say the least, basically bouncing from one crisis to the next, but they keep on keeping on. Anyway, one of Rob’s wife Lizze’s many health problems is a migraine that has persisted, more or less, for a year. Of course she’s miserable. The family lives close to Cleveland — or closer than I do, anyway — and had a consult about the headache there yesterday. I was not surprised to learn that Lizze had been recommended for the IMATCH program.
I posted saying it was a wonderful thing and Lizze would probably benefit greatly by it, though of course it will be hard with Rob having to handle the kids by himself during the three weeks she’ll be gone. Lizzie is apprehensive about the program so I sent them a message describing my own experience and some of the stuff she’ll likely have to go through, etc, while emphasizing that I cannot praise them enough. IMATCH made me into Meaghan again. In fact, Michael says I’m actually better now than I was BEFORE the headache started; in other words, the program had some therapeutic effect besides dealing with the pain.
Anyway, I hope my message is helpful to Lizze. I really admire her and Rob; I could never do what they do.
…and right around this time in the evening, I took an overdose of prescription painkillers whilst in a state of headache-agony-induced madness. And then there followed consequences, including but not limited to wetting my bed, cutting my hand, and having to convince the ER and my psychiatrist that it hadn’t been a suicide attempt.
My life is loads better now, and not just because the Headache is gone. I think I’ve experienced great emotional growth and maturation over the past year. Certainly my life is not exactly smooth-sailing at the moment, but I’ve learned a lot of coping skills and social skills and other stuff.
And today I completed my reading challenge for 2012: a mere 200 books read. (Though of course the year ain’t over yet.) Assuming that for the next six weeks I keep reading at more or less the same pace I have all this year, this will be the smallest number of books read in a year since I started keeping track in 2007. However, I think that’s actually a sign of progress: namely, I’ve opened up to new ways to amuse myself and occupy my hands and my head.
During the Great Headache Crisis, I read at a frantic pace. Second to conversation with a live human being, a good book was the best tool I had for coping with the pain. I read 445 books in 2010 (the GHC began in October) and burned through another 374 in 2011. In January through February of this year (that is, pre-IMATCH), I read 49 books. When I didn’t have a book — and it had to be a good, interesting book, preferably one I hadn’t read before — my mood and my attitude plummeted. I was leaping frantically from book to book to book as if they were exposed boulders in a turbulent rapids I was trying to cross.
I don’t do it anymore. Of course I still read a lot, and love it, but I no longer rate “books” on the same need level as “oxygen.” AND I actually gave myself permission to take a long vacation from Charley. Shocking.
Who am I and what have I done with Meaghan?
I was rereading some of my old blog entries, including those connected to the Great Headache Crisis, and thinking about my life and my state of health and why does this always happen to me? It’s become one of my personal mottos. I don’t mean that bad, tragic things always happen to me — though there have been more than enough of those — but that a lot of unusual things happen to me. I don’t know how much of the cause is my own personality and how much of it is just fate.
I seem to attract crazy people and I say I find them interesting. Yet I know several interesting, sane people. It’s just that the fact is most people I meet bore me and, though I don’t dislike them, I don’t want to come outside of my own personal reverie to connect with them. So when I find a person who is “interesting” it is like finding a rare and valuable object and I throw myself into the relationship.
Sometimes it becomes too much for the other person — and sometimes they are too much for themselves already. Many of my friends, online and off, are slightly dangerous to know. I don’t mean physically dangerous — none of them are violent — nor do I mean they would try to take advantage of me. I mean they are more likely than the average friend to turn psychotic all the sudden and rip my heart out. It’s happened twice times and each time, particularly the first time, it was devastating to me. I mean, like a bomb blast. I don’t want to go into details because I don’t want to defame anyone’s personal reputation.
Suffice it to say that I’m a wide-open target and very easily hurt. People whom I meet tend to be turned off by me than otherwise, and I usually don’t know why. And I make an easy victim when someone wants to lash out. That’s part of the reason how I was my brother Colin’s verbal punching bag for a quarter-century. (My therapists have suggested I actually have some form of PTSD when it comes to him, seeing as how I can’t stand to look at him and even being in the same room with him, even if he is not talking to me, is enough to seriously unnerve me. Michael can always tell when I had to be around Colin, because afterwards my behavior for the rest of the day is kind of shot.)
Now, I’m having to deal with another bully in the form of Michael’s third roommate, J.J., who is roommate M.F.’s boyfriend. (M.F. is a guy, incidentally.) When J.J. is angry, he can’t yell at Michael because Michael owns the house and there’s no contract and he could throw any of us, or all of us, out on a whim. J.J. can’t yell at M.F. because M.F. yells back and it causes discord in their relationship, and increases the chance of J.J. getting kicked out, since Michael doesn’t particularly care for him and only lets him stay out of loyalty to M.F., who is his (Michael’s) best friend. So J.J. yells at me. I find myself getting screamed at for offenses such as leaving a dirty plate which I intend to reuse on the kitchen table for two seconds while I throw away a pop can, or “leaving all your [stuff] out in the living room like a slob” when said stuff consists solely of a watch, a pair of sunglasses and a set of keys. J.J. yells at me because he can. I don’t yell back, and I have no power over him.
Of course, a lot of my propensity to attract bullies is my own fault. I cannot stand up for myself. I am constitutionally incapable of hitting anyone and can’t bring myself to hurt anyone’s feelings verbally either. When screamed at enough, I can be goaded into screaming back, but that requires a lot of provocation. I have no idea how to respond to deliberate acts of cruelty. Usually I don’t react to the person at all, just stare at them in silence. I try to get away from them if I can. My mother and several of my siblings bullied me at home (Colin’s behavior towards me went far beyond that) and when I started school it just got worse. Bullies were a large part of the reason I left school at the end of eighth grade — one of the best decisions in my life, because it lead me to OSU’s campus and to meeting Michael.
Anyway. All of this wasn’t what I meant to write about.
In the past several years I’ve had to deal with two serious health problems, both of which caused great misery and nearly killed me: the depression and the Great Headache Crisis.
The depression I was quite used to; I’ve had it since I was at LEAST eleven years old and probably it goes back longer than that. Once, in third grade, when I was eight, there was a time period of weeks or perhaps a month or two — I’m not sure how long, but too long — where all I did was sleep. I would come home from school, collapse in my parents’ bed (I liked it cause it was a waterbed) and sleep till ten, when they’d wake me up and lead me to my own bed. Then Dad would get me up at seven and I would go to school and spend the whole day yawning and drowsing at my desk, then go home and the cycle would repeat itself. I don’t remember hurting or having a fever or anything like that, I was just very, very tired. After I told the teacher I wasn’t staying up too late and was, in fact, sleeping all the time at home too, she sent a note home. As far as I can remember, though, my parents didn’t think much of it all and nothing was done.
Looking back, their irresponsibility is shocking to me. Healthy eight-year-olds do not suddenly start sleeping all day, every day. They should have taken me to the doctor and gotten me tested for meningitis or leukemia or whatever other illnesses cause those symptoms. But from hindsight, I think it was “just” depression.
My meltdowns at school started in, I think, fifth grade. By the time I was in eleven and in sixth grade, the people at school were talking about “chemical imbalance.” I didn’t know what that was, but even I knew there was something wrong with me. I felt this sense of impending doom, a feeling that the problem would get worse, like a brain tumor or something. (I don’t mean I actually thought I had a tumor — I didn’t — but I imagined my mysterious problem growing like one.) As before, my parents brushed aside the school staff’s concerns and just said I had these breakdowns because I was sensitive and hyper-intelligent and stuff. It just got worse though, as I thought, and I ended up having to leave school in the eighth grade. How much of my problems were caused by depression and how much by my undiagnosed Asperger’s Syndrome is a matter of speculation.
Though I flirted with counseling and later meds throughout adolescence and at college in Arkansas, I didn’t get proper attention and treatment until I was 22 and had a nervous breakdown. It was absolutely spectacular and, looking back at my way of thinking at the time, the way I was calmly and rationally planning to do the most IRrational things, it seems so utterly disconnected from everything else. I remember stating quite calmly that I was dying, asking my mother to take care of my pet rats because I was going to die and telling one social worker that I needed to “go home and finish this.”
During one of my daily evaluations with the doctor, I earnestly requested that he release me from the hospital so I could go home and die. I argued that it was his job to ease people’s suffering, and right now he was only prolonging mine, but he could eliminate it entirely just by signing a release paper. I assured him that his actions didn’t have to extend any further than that — the means I could take of for myself.
He did not dignify that with a response — only an incredulous look. Later on, after I got out, I put in a records request and got his notes and deciphered them, and for that day he wrote I was exhibiting remarkably poor judgment and insight. He became my regular psychiatrist and I know him for a direct, brutally honest, no-nonsense sort of man. We’ve butted heads from time to time, as strong-willed and intelligent adults tend to do, but I’ve learned to trust him.
In the hospital, as I was walking around in a fog of thanatos, there was one patient who was throwing a tantrum and yelling. He was actually the only patient there who aroused even slight interest in me, perhaps because he was the only one who was visibly crazy. I told him to show a little more respect for a dying woman.
For days, I could not lift my head when I walked. I could not look at anyone’s face. I could not speak louder than a whisper.
And then…it was over. Just like that. I came out of that madness like Jonah from the belly of the whale. I remember blinking in confusion and wondering what on earth had happened, because it all seemed like a dream to me. I could hardly believe the things I said and thought and done.
So I was formally diagnosed with Asperger’s (something that, by then, me and my social circle already knew I had) and, of course, severe depression. As what typically happens, it took forever to get my medicine right and there were several bumps on the road, some big, some small. Even after all seemed well, I had regular black periods (perhaps once a month or so) lasting anywhere from a few hours to a week. I just thought they were something I was going to be stuck with forever, and learned how to ride them out, but they were bad. Last year when I got diagnosed with mild rapid-cycling bipolar disorder and started taking Depakote, that the black periods went away.
I’m doing as well now as I have ever done. I still see a therapist regularly (as I have over most of the last four years) and I have a social worker. My biggest problem, now that the depression has been pretty much beaten into a coma, is dealing with my Asperger’s. I don’t buy into all that garbage about “Asperger’s is a wonderful gift, look at all the brilliant people who had it.” To begin with, retrospective diagnoses of people who lived and died hundreds of years ago are not going to be terribly accurate. And more to the point, Asperger’s Syndrome is an enormous pain in the butt and a great burden to myself and my family and my friends and Michael.
I haven’t been able to maintain even a semi-regular sleep schedule since I was twelve. No matter how great my affection for a person, I cannot connect to anyone — Michael says the computer is the only thing in the world that I really want to be around, and that MPs and figures from Holocaust are the only people who are real to me — and I unintentionally anger and annoy people everywhere I go. I have no conversational skills or social skills. I have plenty of theoretical knowledge on a wide range of subjects but no way to apply it. It’s like I know everything about violins, their history, how they’re made, the greatest violin makers, the greatest violinists, I can take a violin apart and put it together again…but I can’t play a single note. (I don’t, in fact, know squat about violins, but you get my point.)
I have incredible sensitivity to noise, touch and taste — particularly noise. I can hear things no one else can hear, and something like a buzzing fluorescent light might send me into a fit that is both agonizing and embarrassing. During these fits I may hit walls or tables or myself, moan and grimace, cover my ears, repeat the same thing like “make it stop” over and over, hyperventilate, rock back and forth, throw myself or objects against walls, and cry, among other behaviors. Apparently it really makes people freak out to see see all this, especially if they don’t know me and don’t know what’s going on.
Usually, if I can get away from whatever overstimulated me and caused the fit, I can calm down and reorient myself quickly. But there was this one time when I got a call from Michael with upsetting news and started having a fit. And I was strapped in the backseat of a car in the middle of an eleven-hour trip, so I couldn’t do the things I normally do to let the tension out. (In retrospect, I should have asked to stop the car and let me out to decompress.) I was reduced to pounding my hands against my thighs, over and over, and over, moaning and doing such rocking as I was able to do with the seat belt on. This lasted for well over an hour before I finally wore myself out. By the time it was done, the sides of both my hands (not the thumb side, the other side) were black from bruising.
Now, why would anyone want to be saddled with a condition that makes you do things like THAT?
I don’t know how different I would be today if I’d been diagnosed and gotten treatment back when I was little. I mean, there is stuff they can do for autistic adults (Asperger’s is a form of autism) but early intervention is so much more effective. Of course, back in 1985 when I was born, hardly anyone had heard of autism or Asperger’s, and I doubt there was much available in the Middle Of Nowhere that constitutes northwest Ohio. But even if there had been some way to help me, because of the incidents I recounted above, I doubt my parents would have taken advantage of it.
They think, now, that my father also has Asperger’s. He’s a lot higher functioning than me — no fits. But in some ways he’s even more socially clueless than I am. Both of my parents failed to protect me from my brother’s abuse and I resent them for it. But I hold Dad less responsible than Mom because Dad really doesn’t get it. He doesn’t understand the concept of hurting a person’s feelings with words. Time and time again I have tried to explain to him the damage Colin did to me and he has asked, in puzzlement, “But you know the things he said weren’t true. You’re not stupid or ugly. Your mother and I love you very much and we would never have sent you to an orphanage. So why would his saying those things upset you?” He did not protect me because, in his mind, there was nothing to protect me from.
And then there’s the Great Headache Crisis. Though not in and of itself dangerous, it nearly killed me too. The Cleveland Clinic’s I-MATCH program not only gave me my life back, but also saved it, because I am convinced that, if I had remained in that condition for much longer, I would eventually have died either accidentally from an overdose, or on purpose, not because of depression but because I couldn’t stand the pain anymore.
My depression was, more or less, under control throughout the GHC, though some of it may have been that I was in too much pain to feel depressed. There were times when it seemed the one could not be separated from the other — that is, I was so despondent over my condition that it was remarkably like a bout of depression. I said, repeatedly, that if I had to choose one or the other I would take the headaches, but as the GHC wore on I got more unsure on that point.
Back last November I ODed on prescription painkillers and almost died. This was the time when I cut my hand; you can re-read the entry and see the gross pictures if you like. You’ll notice that I told a tiny little white lie, claiming it was a drug interaction and not an overdose. I just didn’t feel comfortable at the time writing that I had overdosed, but indeed I had. I was all alone, house-sitting for my mother who was in Mexico, and my head hurt. All I wanted was for the pain stop. I would have done anything to make it stop. And I did.
The last thing I remember is returning to my laptop after taking the pills. Then I woke up the next afternoon and I’d wet the bed and, as I said in my entry, I couldn’t walk two steps without falling flat on my face — which I did several times. My mind worked, mostly, and I remembered I had an appointment to see my psychiatrist and clearly I was going to have to cancel it because I was in no condition to drive and probably wouldn’t have made it out to the car even. It took several tries to dial the phone number to his office correctly. I didn’t tell them the truth of the situation — saying “I can’t come to my shrink appointment because I took way too many painkillers last night and now I’m stumbling around like a drunk” would have resulted in the police knocking on my door. I said I was feeling a bit under the weather. I think my voice must have been slurry or something, because they were like “are you okay, do you need an ambulance” and whatnot. I said no, and they said, uncertainly, “well, call back if you feel worse.”
In retrospect, yes, I did need an ambulance. I considered it for about five seconds and decided against it because I didn’t want my stomach pumped, or awkward questions being asked. And then I cut my hand and bled all over the place, as I recounted before, and then went back to bed, and then the remodeling guy came and did what he could for the cut out of his first-aid kit. I went back to bed and slept for more than 24 hours, and when I woke up I felt much better, though still kind of thick-headed. I unwrapped my hand and saw, for the first time, how bad the cut was, and went to the urgent care clinic to get it stitched up.
Unfortunately I made a terrible mistake when I told the truth to the nurse about what happened. (I really, really wish, even now, that I’d just said I was drunk or something.) She totally freaked out and told me if I didn’t summon a relative to take me to the hospital, she was going to have the police do it for me. I remember she was like, “You seem kind of agitated, maybe you’re still suffering from the drug effects.” Which I was, but that wasn’t why I was agitated. I was like, “I am agitated because you won’t sew my hand up. Why won’t you do it? That’s all I want you to do.” She refused to do it, or to let me drive myself to the hospital, because she suspected, quite correctly, that I would have just gone home.
The funny thing is, she would not admit “I think you are crazy” or “I think you tried to kill yourself.” She would not admit that she wanted me to have a psych eval and focused entirely on the cut and the overdose, going on about toxicity and liver failure (though I pointed out I should have been jaundiced by now). It was ridiculous. When she called the hospital to tell them I was coming she described it as a suicide attempt and, I don’t know if this was a misunderstanding or what, but somehow the hospital was under the impression I’d taken almost six times more pills than I actually had. She behaved in a completely unprofessional manner (Dr. Easley agreed) and I later called the clinic to complain.
I don’t think she meant any harm. I think she panicked. But nurses do not have the luxury of panicking.
So there was Dad taking me to the hospital, and four hours of waiting and annoyance. They did the psych eval and I was extremely irritated by then and kept explaining, “I did not want to die. I wanted the pain to stop. I’m not depressed, I’m in pain. There’s a difference.” Then the nurse who did the psych eval took it up to the psychiatrist on duty — who happened to be my regular psychiatrist, who really let me have it when I went to see him next.
And another nurse told my confidential medical information to Dad, info I didn’t want him to have because I knew he would get mad at me. And he did. I threw a bit of a hissy fit when I found out and was ranting about the HIPAA Act in front of other hospital staff members (the violator was not present) but I never filed a report. It wasn’t worth it to do so. She was genuinely trying to help, and she was pregnant and I would not be responsible for a pregnant woman losing her job and possibly her nursing license.
Then, finally, I got my hand sewn up (it took like five minutes) and got sent home with a script for antibiotics, too agitated to sleep. I washed my pajamas and the sheets which I had urinated/bled on and then screamed in frustration and rage as I attempted to put the sheets back on the bed. It’s hard enough doing it with two hands; try doing it with just one. I didn’t fall asleep till like four in the morning.
I made an appointment to see Dr. Easley in order to give him my side of the story before he got the records from the hospital. When I told him what I had taken he was all like, “Jee-zus. Why are you still alive?” He asked if I might over-medicate myself in the future and I could not promise I would not. In fact, I pretty much guaranteed I would. The pain was just too great. And he was like, “You could die” and I said, “I don’t care.” He said, “Well, that means to me that you are suicidal.” I said, “No, not really. I just want the headache to be gone. One of us has got to go.” After that he was afraid to prescribe me anything. He really didn’t know what to do. Neither did I.
It was four days before the overdose wore off and I felt entirely all right again in my head. And it took awhile for the enormity of what happened to sink in. Some time later I was on my computer and opened up a writing project I had been working on and hadn’t touched since the night I had ODed. And I discovered I’d apparently tried to work on it after I took the pills: there were pages and pages of complete gibberish. I couldn’t make any sense of it and wound up having to rewrite it all. There was no punctuation, and mostly no words, and sometimes whole paragraphs of the same character over and over. It looks like I was passing in and out of consciousness in front of the keyboard. And I have no memory of any of this. Complete amnesia. That scared me.
In the final analysis, what bothered me most was not cutting my hand (which was gruesome and painful, but not a serious injury) or the four-hour hospital ER nightmare (very annoying, but it was over now) or various people getting mad at me for being stupid (also annoying but temporary) or even the possibility that I could have died that night (what better way to die than in your sleep from an overdose of opiates?) What bothered me most was the idea that I could have died, and for the rest of their lives my family and friends would have wondered whether or not I did it on purpose. There would have been evidence to the contrary (mainly that I didn’t take the whole bottle, not even half) and they would most likely have told themselves I probably had not, but there would have always been that doubt. A terrible thing to inflict on those who love you.
The scar turned out not to be as large or as prominent as I thought it would be. In fact it’s barely visible; people don’t notice it unless I show it to them. But I look at it often and remember how I got it.
The other near-fatal headache experience I wanted to write here about happened in the first few days of January. I had had what I called “suicide headaches” because they made me feel suicidal. This was the very worst of the worst. I had been in severe pain for several days by the time I woke up on January 4. Now, usually the Headache wouldn’t be there at all right after I woke up, and wouldn’t make itself known for at least an hour, then grow steadily worse as the day went on. Well, this time it started, fiercely, within ten minutes of my waking up at 5:00 a.m. In fact, I had even dreamed about the pain, something that only ever happened that one time.
The pain was the worst I’d ever felt during the entire 15-month Headache Crisis. It’s difficult to describe. I can’t use the typical words like “burning” or “throbbing” or “pressing.” There was no particular spot where it hurt more than anywhere else. All I can say that I had this mental image of a rotten apple, brown and soft and mushy, with the skin wrinkled and turning black and starting to slough off altogether. I had no meds at all — I’d had a Dilaudid script but had run out of it. I spent some time pacing around the living room, trying to keep my steps quiet so as not to wake the boys, trying not to scream. I made attempts to focus on something else, like a book or my computer. I was usually fairly successful at distracting myself from the pain, but not this time.
I was seriously afraid I was going to hurt myself. I kept thinking about kitchen knives and the tie on Michael’s bathrobe and stuff. I did not really want this to happen but it seemed like it might anyway, an involuntary reflex action, the way you yelp and jerk your hand when you accidentally touch a hot stove. During that time period, in Michael’s living room at 5:00 a.m., I was once again willing to do ANYTHING to make it stop. But there was nothing to do.
I had to do something other than pace around my boyfriend’s living room, but my options were limited. I didn’t want to wake the boys. I had no faith in hospitals anymore. What I needed was morphine, and I knew they wouldn’t give me that. But I couldn’t be alone. So I threw my stuff in my car and drove for an hour and a half to Dad’s apartment. He had no reaction to my appearance on his doorstep so early in the morning. I explained the purpose of my visit and we sat around for a few hours talking about any random thing, just to get my mind off my head that was splitting apart. I remember we talked about the dissolution of Czechoslovakia in 1993. I found I could distract myself if I had another person to converse with. It never gets any less but it becomes bearable that way. I remember actually laughing as I told Dad about some funny website I’d visited, laughing even through all that pain.
The whole time I kept saying that I wanted to die, that I could not take it anymore, I wanted to be dead, etc. Dad was like, “Do you need to go to the psych clinic?” And I said, “No, they can’t do anything for me.” And he said, “You don’t sound depressed” and I said “I’m not.”
Eventually, once the offices all opened up, I called Dr. Easley. Dad had an appointment with his cardiologist in Dr. Easley’s building that morning. I rode along with him and went to Dr. Easley’s office while Dad was seeing the cardio. I didn’t actually see him, just talked to a nurse and tried to explain what I was going through, which was never easy. I was desperately hoping for a shot of something. Dr. Easley agreed to refill my Dilaudid script but would prescribe nothing else. I think he wouldn’t have even done that if he hadn’t known Dad was with me, on account of being afraid I’d overuse it. (He also referred me to a pain specialist, but it turned out the guy didn’t treat headaches.)
In the hallway I called my friend Wendy the Minister and talked to her and told her I was in so much pain that I wanted to die, right now, right here. She said, “You don’t want to die, you want the pain to stop.” Dad and I went to the pharmacy to get it and right there in front of the counter I immediately took the maximum allowable dose, 8 mg, which like the equivalent of a horse tranquilizer. Had my father not been sitting right next to me I think I would have eaten the entire bottle, bought some vodka, downed as much as I could, sat down in some quiet place and never gotten up again. I was just so miserable.
After that Dad drove to Mom’s house with me. He was going to go there anyway to drop off his recycles (his apartment building doesn’t recycle, so he gives his recycles to her and she gives her garbage to him so he can dispose of it free in the apartment dumpster). Mom was of course surprised to see me with him. When we explained why I was there and what had happened thus far she started yelling at me. I was glad to get out of there. Dad took me to lunch, then to my chiropractor appointment.
With the Dilaudid at first, nothing happened and I thought it was going to be a hopeless failure like everything else. But after like, over an hour, it started to sort of work. It cut the pain, perhaps, in half. Which meant I was still in great pain, but I could stand it and I no longer entertained thoughts of death. I remained in that state for the rest of the day. Dad and I returned to his apartment, he put oil in my car and I drove back to Fort Wayne.
The pain level held for the next several days — that is, it didn’t get worse and didn’t get better — but I felt utterly hopeless. The only thing that was stopping me from completely checking out was my responsibilities to my family and friends, knowing that they would be shattered by my death. I was convinced I would be in pain like this for the rest of my life and it would never improve. I wrote to a friend:
I am seriously worried that one of these days, if something doesn’t change, I’m going to just absolutely go out of my mind from this pain and drive into a building or something… I am NOT depressed in the psychiatric sense, I don’t believe — when my head doesn’t hurt I’m cheerful enough — but the end result is pretty much the same… The only good thing I can say is that I handled this pain crisis much better than I did November’s.
I am convinced that, had I not gone into the I-Match program around six weeks after that day, incidents like that one and the one in November would have happened again, and continued to happen, until something broke. When I told Dr. Easley that one of us would have to go, I meant it.
I try to use the DHE, the magic bullet that stops my headache when nothing else will, very sparingly. I still have a Dilaudid script. I actually had a headache tonight and took 4mg, which took care of it just fine.
A lot of people have told me how “brave” I am for going through those horrible months of suffering. I don’t see what’s so brave about it. It’s not like I had a choice. I complained bitterly the entire time, just ask anyone. And I don’t think I learned anything or gained any particular insight from the suffering. The depression, perhaps because I had it for so long, I incorporated into my identity. I can’t really imagine myself without it. But the Great Headache Crisis was just something else, an unpleasantness I don’t think about too much anymore.
Anyway. I’ve gone on way too long about this. I’m pretty sure this is the longest post I’ve ever done.
Today I had my bimonthly visit to my psychiatrist, Dr. Bruno. They were running an hour late, which was extremely annoying; good thing I had no other plans. If I charged him the waiting time he’d wind up owing ME money. Anyway, I told him about the I-Match program and how much better I feel now, even though I still have the Headache. I talked about how before, my headache pain would get so bad sometimes that I wanted to kill myself — this happened twice in the month of January, for example.
“You shouldn’t say that,” he said. “You will get yourself in trouble. I’m a psychiatrist, you know.”
“But you understand,” I said, and he said yes. We know each other well enough that I can talk about suicidal thoughts with him without being automatically thrown in the hospital. (And incidentally, I haven’t had any since I’ve gone into the program.)
Dr. Bruno was very curious and asked all sorts of questions about what sort of stuff they did at I-Match, and did I have to sleep there, or what. It turns out his curiosity wasn’t idle: at the end of my visit he revealed that he had another patient with severe chronic back pain who’d been recommended for the I-Match’s counterpart, literally just across the hall, their three-week general pain management program based on the same model and run by the same people. He said his patient was “whining” about how she didn’t want to go away for three whole weeks, etc.
“Tell her what my friends told me,” I said, “that she’s probably already lost three weeks and more in pain days. It’s an investment.” I gave him my official permission to share with that woman my story and how much pain I was in and how thus far I have benefited immensely. He said he would. I hope he can convince her to go. I would count it as a good deed on my part if my story would help persuade her.
Yeah, so this past week was my third week of the I-Match Program. I graduated and went home on Friday. I feel a lot more confident that I can manage the Headache from now on. The whole purpose of the program was not to cure it — they’ve given up on that idea and so have I — but to find a way to live.
We had two “Feedback Meetings” where everyone in the staff — the exercise trainers, nurses, doctors, psychologists etc — would get together with all of the patients at once. In front of everyone the staff would ask us how they thought we were doing, then tell us what they thought we were doing. This was not done privately, but in front of the other patients in the program, for transparency. At both meetings, everyone thought I was doing really well. Particularly impressive, to me and to them, were the biofeedback sessions. They hook you up to this machine that measures the temperature in your finger and you’re supposed to try to raise it just by thinking. The idea is to re-direct blood flow away from your head, which tends to reduce the pain.
In the first biofeedback session, the therapist told me to imagine a beach, and described me walking in the sand and sun and stuff. The second time you have to do it without guidance. Well, the first session I raised my temperature by twelve degrees. The second time, I was even more successful: I imagined myself in a hot shower, and raised my temperature by fifteen degrees. Perhaps this was because, while I shower almost every day, I haven’t been to a beach in years. Twelve degrees is apparently pretty high, never mind fifteen. The more so since I’m a very concrete thinker and was skeptical that I’d get this to work at all.
At the second feedback meeting, however, all of us got a nasty surprise. One of the other patients, Christopher (not his real name), got voted off the island! He was in the week before me and had been in the program a week and a half before that. When it was his turn to get feedback, Dr. Kraus, who normally speaks first, asked the staff at the other end of the line to start. Emily (not her real name), who was in my week, looked at me uneasily, because we both knew this was not normal.
And then the staff really criticized Christopher, which is also very unusual, because they’re normally very positive in their feedback. Christopher, the staff members said, was obsessed with pain relief, which the program could not provide and had told him straight-up they could not provide. He wouldn’t really talk during all the group meetings and was resistant to both patients’ and staff members’ suggestions. For example, during the exercise sessions, if the trainer tried to correct something he was doing, he would just like glare at her and keep doing whatever he wanted. He just had a bad attitude generally. So when Dr. Kraus finally spoke, he summed up the position of the staff and said this was something they didn’t do very often, but they had voted and unanimously decided to kick Christopher out of the program. It was pointless, even unethical, to keep him and waste his time and money when clearly he wouldn’t benefit.
This was all extremely awkward to listen to, but they did it in front of us for a reason: so we’d know exactly why Christopher had to go, and not decide he was being picked on or something. And in fact all of us understood. We’d observed the same things the staff had. Christopher never talked. I had taken an interest in him because he was much closer to my age than the other patients (he is 21) and also kind of cute. I was able to extract the information that he was a student at the University of Iowa, studying history like I did when I was in school, and I thought we could bond over our shared interest in history, but conversing with him was like pulling weeds. One of the group assignments was to write three nice traits each other person had, and none of us could think of anything to write for Christopher, simply because we didn’t know any of his traits at all. I’m sure he had some, but he wouldn’t share them with us.
I think I said before, there’s supposed to be three in each week. But one of the women in my week had to quit on the second day: during the drug infusions she suddenly forgot who, when and where she was, and had to be hospitalized for like a week. She didn’t come back. So that left Emily and me. And then in the week before us, someone had to cancel at the last minute so there was just Christopher and a woman from Oklahoma, Mary. (Not her real name.) Mary and Emily and I got on splendidly and really bonded and stuff and exchanged email addresses, but frankly I’m not sure we will keep in touch. I liked them both a lot but we really don’t have anything in common besides headaches. Emily is a middle-aged stay-at-home mother of two from Columbus. Mary is a late-middle-aged grandmother and self-described “Tea Party Republican evangelical.”
I’ve discovered that exercise will eliminate the headache pain entirely for awhile, plus it’s good for you generally, so I plan to start a regular exercise program. We had to exercise every day at I-Match. I liked being on the NuStep machine in the gym. Once when I got pulled off the machine prematurely cause of scheduling concerns, I was actually disappointed. And this from a person who had never voluntarily exercised before in her life! So I’ve looked into joining a gym. There’s a 24-hour one here in Fort Wayne and I got a free two-week pass off the internet; I will investigate tomorrow. I hope it has a NuStep because I could never afford to buy one of those things.
I-Match also gave me the name of a physical therapist they think I should see, to work on the problems I’ve got with my neck. During the program, twice a week I saw a PT named Ian who was very nice and prescribed a bunch of exercises for me. They take just a few minutes a day to do and my neck’s improved a lot already.
A lot of you have asked about diet. Well, we did have a diet talk and Nurse Debbie gave us a very, very long list of foods that could trigger headaches. Then she more or less told us to disregard the list and eat whatever we wanted. She said (A) If we avoided all those foods entirely there’d be almost nothing left to eat and (B) All of us had had headaches for so long that if there was a particular food that triggered it, we would have found this out for ourselves by now. Speaking of diet, the food in the cafeteria was terrible. No high fructose corn syrup to be found anywhere! Low fat this, diet that, low sodium something else.
For medicine, as I said before, DHE works for me, but they said to take it only twice a week. They strongly advised against taking painkillers, ever again, for anything, and gave us a list of pretty much every painkiller known to man and told us those could trigger the horrible “rebound affect” with our headaches. (This is why they don’t want me to take DHE too often, cause using it too much could also cause rebound headaches and render the medication ineffective forever after.) I finally did learn to inject the stuff without a hitch, but I can’t take it too often in any case because it costs $35 a dose. As for other meds, when I need them for anything else — color me skeptical. I am sure rebound headaches exist, but I’m not going to never take painkillers again just out of fear of triggering them. In fact, I’ve already cheated: I hurt my foot pretty bad while in the program and took Advil for a day or so. Four in all, I think. My headache level didn’t change one whit, and I told Nurse Jane about it, and she said that I should just not use painkillers several days in a row. If I have to get a tooth pulled or something and have to deal with pain after, I should tell the dentist or whoever to call the Cleveland Clinic for advice about what drugs to prescribe. Yeah, okay.
But no more Dilaudid. I had been taking that for my headaches and, frankly, it wasn’t working so well anymore. The maximum FDA-recommended dose, 8 mg, which is like horse tranquilizer for most people, wasn’t doing anything for me. And apparently Dilaudid is a particularly bad rebound-causing medication. Before my first weekend home, one of the neurologists asked what she could prescribe in case I had a crisis headache at home, and I said, “I usually take Dilaudid.” And she said, “I will prescribe Dilaudid over my dead body.” Don’t be shy, Dr. Tepper, tell me what you really think!
The other neurologist I saw was Dr. Stillman. He is Jewish and the whole older generation of his family are Yiddish speakers — which interested me a lot, given my interest in Judaism in general and Yiddish in particular. Dr. Stillman thought I was a riot. Just about everything I said made him burst out laughing. I wondered if he was going to asphyxiate himself or something, seriously. I will see him at my follow up appointment in June — also Dr. Kraus and Ian the physical therapist.
So DHE. And stop swallowing opiates by the fistful. (Followers of this saga know I was pretty sick of doing that, anyway.) And exercise. And physical therapy. And going BACK TO SCHOOL to finish that degree so I can get a real job that I don’t hate.
One last thing: The first rule of Fight Club is: You do not talk about Fight Club. The second rule of Fight Club is: You do not talk about Fight Club. In that vein, on the first day we were told that thenceforth are not supposed to complain, or in any way show it, when we are in pain, and our loved ones are not supposed to ask. That includes all of you. It’s for my own good. 🙂
Yeah, life looks pretty good from here.
I have finished with the second week of I-Match and am now back at Michael’s. I report the following items of interest:
- The girl from Alaska (who graduated yesterday) and I have become friends and she says she will email me.
- During the biofeedback/guided imagery session, I was able to raise the temperature of my finger by twelve degrees. Even the psychologist who was working with me was astonished.
- Shya, Dad’s colleague whom we’re staying with, is quite a character. Four and a half feet tall and perhaps seventy pounds soaking wet, she’s convinced I’m too thin and need fattening up. She wants me to do yoga every day and demonstrated for me. At one point she lay flat on her back and, all the time maintaining this horizontal position, lifted her legs up and back and placed her feet on the ground behind her head. It was like she was made of rubber or something. I gaped at her, but she said she’d been yoga-ing every day for the past 81 years so it wasn’t really that impressive.
- Friday was the “family meeting.” Dad was there of course and Michael drove 3 1/2 hours to be there. Basically the family members all talked about what it was like to have to deal with our suffering, and were advised on how best to help us.
- Most importantly, they finally found for me an abortive drug that actually works and isn’t an opiate or anything like that. It’s dihydroergotamine mesylate, or DHE. DHE usually doesn’t work for New Daily Persistant headache, but it does for me, so I got lucky for once.
- DHE is an injectable drug. The nurse taught me how to inject into my thigh and I practiced with saline, doing pretty well. However there is a big difference between extracting saline from a bottle sealed with a thin rubber cover you poke the needle through, and extracting DHE from a teeny tiny glass ampule that you have to break open. When I tried it last night, I wound up spilling half of it — twice. Not only do I of course want the full dose for effectiveness, but also DHE costs $35 a dose, so this unacceptable. On the third try I was finally able to extract most of it without spilling, but I needed Michael’s help. I suppose I’ll get better, but I only have ten doses (seven now) and don’t want to waste them.
- DHE got rid of last night’s severe headache (Level 8 on the pain scale) entirely. (I would have accepted a Level 2 or even a 3.) But I’m not allowed to use it for more than two days a week. To prevent myself from being in agony five days out of every seven, I’m supposed to exercise regularly and do the relaxation stuff they taught me to do.
Yeah. So things are working out really well so far.