Sleepless on Seroquel

May 22, 2008

This is too true: taking Seroquel and still being an insomniac is horrendous.

My 100 mg dose (very low, but I’m extraordinarily sensitive to meds) knocks me out within half an hour of ingesting it, and I have a good solid eight hours.

The severe depression started coming on strong in February so my doctor put me on Celexa, which then kept me up all night. The groggy, staggering-drunk effect of the Seroquel was still operating, but I couldn’t sleep. A very special kind of hell.

So I stopped taking the Celexa. I also didn’t appreciate the anorgasmia.

What my day was like.

April 28, 2008

A while back I asked a guy I’ve been dating casually (“D”, for our purposes here) whether he’d like to see a particular movie with me: it’s a documentary by a couple of friendly acquaintances of mine about a famous literary figure which D likes quite a bit. He enthusiastically said yes. I wrote back a quick email, saying “cool” or some such.

By this morning he had not called or emailed. I texted him to ask if he still wanted to go. Nothing. Then I called and left a voice mail, saying please let me know because someone else would like to go if you can’t (a lie, because after all, I have no friends, let alone any friends interested in seeing this film). I am still hurt and angry and wonder why is it that I keep hanging out with men who are pretty much indifferent to me.

I was so angry that I sent an email not to him, but to L, the psychiatrist. I had written several drafts of long emails spelling out my grievances and hadn’t sent any of them. But then I was like, fuckit: Guys act like dicks to me and I’m sick of it. Within some twenty minutes of sending it I received what seemed like a heartfelt, albeit brief, apology. But I still feel like shit. It doesn’t really matter if he’s sorry because what hurts is that I was treated that way in the first place.

So I went to the film unaccompanied by a date. C was there with Y. N was there with R. I just look at everyone, all paired up, and wonder why I can’t find anyone who even respects me, let alone loves me. I started sobbing on the sidewalk, where C was on lookout for the last member of our party, who was late. Said I felt like garbage. He said I didn’t have to stay. This misses the point. Of course I know I don’t have to stay. That’s not the problem. The problem is that I want to throw myself in front of the train because I’m an absolutely worthless human being, and no one gives a shit about me, appreciates me, or loves me. It’s an empty existence.

I really wish I had the balls to kill myself, but I can’t let go of the world. I’ll bet it’s the kind of thing you can work up to — deleting a blog is practice for the ultimate letting go of suicide. I’m trying to work myself up to deleting my other, non-secret blog tonight.

I last saw the psychiatrist in January. (That’s the psychiatrist I was *dating*, to be clear.) It was right before I started work and though I spoke to him briefly during the following week, I didn’t see him again. After the first couple of times we got together, last April, and then didn’t see him for a long while, I thought about him a lot. I wanted to be with him again. I was a little hurt and confused that he never called, but then again, I never called either, mostly because I assumed he was run off his feet at the hospital.

But the last hookup in January cured me of any longing I might feel for him in the interim. First of all, the sex was pretty lousy. He doesn’t follow instructions well, he has a small dick, and he doesn’t spend enough time on what guys call “foreplay” but what I call “sex.” Worse, he kept pushing his dick against my anus, even after I shifted away. Then when I told him I wanted him to use a condom for vaginal intercourse, he actually had the gall to argue with me, asking me what I was afraid of: after all, he had just been tested and was clean. I was pretty flummoxed by that. I guess I felt it would be gauche to respond by saying that he had no idea what *my* habits are, and if he’s willing to have unprotected sex with me, he’s probably willing to have unprotected sex with anyone. He kept trying to convince me that he was totally safe so I told him that I was afraid of pregnancy, and that seemed to satisfy him.

When I thought about the encounter in the following weeks, my resentment grew. I resented that my pleasure seemed to be an afterthought. I resented the pushiness, the willingness to trample over my boundaries, and I resented the fact that he wanted me to keep up a constant stream of dirty talk to turn him on, which I find exhausting and detrimental to my enjoyment of sex.

Today, out of the blue, I got a pretty long email from him, as emails go. It was stranger than it was long. He started out with some pleasantries about how he hoped I was doing well, etc. Then he launched into some incoherent fantasy he’d had about me that involved me squiring him around town like “arm candy”.

Then he said he wanted to see me again. He still fantasizes about fucking me, he says. I’m the only one night stand he wants more of, and happily, we’re both cool with keeping things casual (translation: I like you because you make no demands). Maybe we can experiment, explore fantasies, including sadistic ones. But the next time (arrogantly presuming that there will be a “next time”) I should “remind” him to use condoms because even though he’s clean, pregnancy would be an inconvenience.

Then, the finale: would I be interested in going to a sex party with him? It’s something he’s always fantasized about and been curious about, provided that the other people there are “reasonably attractive”, clean, and not too out there in their predilections. He provided a link, which I didn’t click on until I got home. It was not terribly enticing. Ugly do-it-yourself web design circa 1996, punctuation and grammatical errors, and vague descriptions of their services that don’t give one a very clear idea of what the space is like, what the other people are like, what to expect, etc. Their “rules” page was all about cleaning up after yourself and how not to rape people. (And by the way, on the topic of poor spelling, L’s email was 339 words, 31 of which were typos or incorrectly used. This actually made me wonder briefly — hi, paranoia! — whether it was actually his work.)

All day I’ve been going over in my head possible responses, from the short and pithy:

“Were you drunk when you wrote that? Or typing at the bottom of a dark cave?”

“Not interested, but thanks for asking, I guess.”

“I don’t think we’re sexually compatible.”

Then there’s the option of making up some excuse to avoid hurting his feelings:

“I’m seeing someone”, or “I’m too busy.”

Another option is to ignore the email entirely.

But the option I’ve expended the most mental energy on today is the detailed explanation for why I feel that he was out-of-line disrespectful. “and a place to experimet [sic] with trying out fantasies of indulgence an even sadism, but with a trust that we would stop the moment either expresses discomfort or needs a break.”

Well, when I said “no” to condomless sex he didn’t respect that, and argued with me instead. The anal play was something not explicitly negotiated and was (clearly, I believe) something that made me very uncomfortable, and yet he didn’t let up. Past practice is the best indicator of future behavior, and if he wasn’t willing to take my “no” as the final word before, why would I trust him as a partner in S&M scenarios?

I think my course of action will be to stew for a while, write some draft emails that I never send, and then just forget about the whole thing.

Mood chart 04-21-08

April 22, 2008

That annoying email message preoccupied me all day. Unusually tired at work: couldn’t get out of bed this morning at the regular time, and felt like falling asleep on the subway home. Scattered and couldn’t concentrate on tasks. Angry about the email, composing responses in my mind over and over. Can’t stop picking the scab on my split lip. I have a giant zit on my nose.

4/10

I like New Year’s Eve better when I treat it as a contemplative holiday. I always felt so much pressure to do something fun! and get really drunk! Since I can’t drink now there’s even less of a reason to do the festive thing, so last night I hung out with one friend. I was asleep before midnight.

As the year drew to a close I began to think about how I would characterize 2007. It was a hard year. 2005 and 2006 were hard too, but in different ways. In 2005 I was under a great deal of academic pressure, then saw my marriage collapse. In 2006 my father died, I suffered a romantic disappointment, and then later, once my coursework was done, I just sort of ground to a halt. 2007 was hard for reasons you know about if you read this blog regularly.

I’ll always remember 2007 as The Year of the Correct Diagnosis. Realizing that I have bipolar disorder was a large part of what made the year so hard.

It’s hard to overstate the importance of the diagnosis. Not only because it means I now take drugs that I can mostly tolerate, as opposed to the purely antidepressant tack, which was horrible and harmful…but more because it changed the way I look at my past, my present, and my future. And it has instigated a sort of identity crisis which has left me wondering who I would be without the disease.

I’ve struggled with depression my entire life, but in the past few years it has really hindered my ability to function. It was a very lonely state, too, because it was mania and depression at the same time — serious agitation, racing thoughts, anger, obsessiveness, inability to concentrate, poor decision-making powers…etc — and no one I talked to, not even the people who said they had experience with depression, understood what I was describing. Some people expected a higher level of mood or a higher level of functioning than I was capable of, and when I shut down, withdrew, became catatonic, they became angry at me or cut me off. Other people’s accounts of depression seemed so different from what I was experiencing. My situation seemed so much worse than theirs. Whenever anyone tells me now that they understand what I’m going through because they’ve gone through it, I want to ask: how many broken marriages? How many academic drop-outs? How many hospitalizations? How many times on social assistance?

Toward the end of 2006 and at the beginning of 2007, I started to see clearer patterns to the depressions which made it easier for me to identify the triggers that were likely to send me spiraling downward or bouncing up and down. Certain kinds of social situations, for example, especially big groups of people, and even more especially, when alcohol was involved. Getting little sleep. Stress. Caffeine. I came to feel apprehensive or even a little alarmed on the rare occasions when I felt high, because I knew it was just a matter of time until I crashed horribly.

So I went off caffeine, tried to maintain as regular a life schedule as possible, and avoided the triggers. I was basically practicing the the kinds of things that bipolar patients are advised to do by practitioners of social rhythm therapy. I still felt like crap, though, so I started seeing a psychiatrist and luckily for me, he was a very intelligent and observant psychiatrist. He started out by assuming I was depressed, and put me on antidepressants. But when I described how they made me feel, and when he saw the manifestations of my turmoil, he said, maybe you have bipolar, let’s do this instead.

“This” was antidepressants plus an atypical anti-psychotic plus a benzodiazapine. The side effects at times are difficult to manage, and I feel only marginally better than I did last year, but during my last appointment he asserted again that he was sure that the meds were working and that I should stay on this basic regimen with minor adjustments here and there.

Once I was diagnosed I started reading about bipolar disorder and the more I read about it, the more convinced I was that this is what I have. Accepting that I’m bipolar is a big deal in and of itself. Years of misdiagnosis, ineffective treatment, and arrogant psychiatrists who didn’t really listen to what I was telling them made me very sour on psychiatry as an institution. I’m still sour on it, and think that there are some serious philosophical problems with the way psychiatry views people (a topic for another day — in fact, it was the topic of my Master’s thesis in Philosophy), but my problems are clearly not simply a matter of growing up in a fucked-up environment.

It’s not easy to accept that you have a psychiatric illness of that seriousness. There’s such a stigma attached to bipolar disorder — how many times have I had to listen to make people make offhand and dismissive remarks about “bipolar” people, where the word is used as a catch-all term for a cluster of vaguely-defined but very definitely negative qualities. As far as stigma goes, I’d rather have bipolar than schizophrenia or borderline personality disorder, but it still hurts to think that the disease all by itself makes me bad, makes me into someone that others should avoid. And it’s very painful to think that my personality, my very self, is diseased and defective.

Once I accepted the diagnosis, however, many things about my life began to make sense. It explained the huge fluctuations in functioning, from over-achieving, creative and inspired, to withdrawn, angry, and blocked. The fact that it’s genetic explained my crazy father (himself misdiagnosed I am convinced) and his alcoholism. It explained why years and years and thousands of dollars in therapy did jack shit for me.

But I wonder whether bipolar doesn’t also explain my achievements.

One of the things that really struck me when I went on Facebook was how differently my life turned out when compared to the lives of those I went to elementary and high school with. Almost none of them even got bachelors’ degrees. Almost none of them left Hamilton, despite having class backgrounds that were better than mine. They all came from working class immigrant families, whereas I came from a working class immigrant family that took a turn for the lumpen in the very early eighties.

Nothing about my background would suggest that I would end up highly educated, articulate, and worldly. My father died illiterate, and my mother had a grade nine education. There were books in our house but my mother never read to us. My older brother is autistic; my younger sister never finished high school and has never worked an over-the-table job. I didn’t even know anyone whose parents were professionals until I went to university.

From a sociological standpoint, it’s kind of unlikely that I would end up where I did, especially given how stressful and painful the journey was. Why am I the freak? Where did I get the intelligence, the scholastic aptitude, and ambition (such as it is)? How did I end up in New York when almost everyone else stayed in Hamilton?

I now think that the intense depressions have been a major motivator for me to try change things about my life that I was dissatisfied with. It made me drop out of high school a number of times (which I actually think was a positive thing in retrospect because it gave me time to read the things I wanted to read and allowed me to be self-directed). I couldn’t tolerate living with my family so I left. I didn’t have any strong attachments to my family or my town, so it felt perfectly natural to go to university in another city. During a very serious depression in the early nineties, a guy at a suicide prevention hotline suggested I break out of it by dropping out of school, taking the rest of my student loan money and going to Europe. So I did. Best advice I ever got.

In general my constant dissatisfaction with my self has led me to try to make myself better. A better student, a better language-learner, a better photographer.

The depression motivated me to travel, but once I got to the destination the disruption in my circadian rhythms, coupled with hyper-stimulating environments and increased sunlight made me manic. I look back at that four-month backpacking trip, as well as the first year I spent in the Middle East and realize that I was hypo-manic. I did things that I think now were reckless, but at the time were just crazy fun.

I’m not sure to what extent I believe the stuff I wrote above, about the bipolar being responsible for the the things I can be proud of in my life. Cognitive dissonance is no doubt at play: the thought that I just suffer for no good reason is too horrible to contemplate, and when I go down that road, that’s when I start asking what the hell the point of living is. If I can forge some meaning out of those horrible depressions it makes it a little easier to soldier on, and makes me hate myself a little less.

So now, in the morning, I take: .5 mg of Klonopin; 300 mg of Wellbutrin XL; a multi-vitamin; and a B12 supplement. In the afternoon I take another .5 mg of Klonopin. In the evening, around 8pm, I take 50 mg of Seroquel, and then, an hour or two later, 100mg.

This was going along okay. But I’m realizing that it was okay because my life circumstances weren’t that bad. Now I have less than no money; no job; a recurrence of the physical pain and numbness on the right side of my body, which I’ve complained about for years without any doctor being able to tell me what’s wrong; and no real support network to help me through trying times.

The doc gave me a scrip for a beta blocker to get me through today’s volunteer interpreting gig (the less said about that, the better), and Monday’s interview with Company X.

Things have been getting worse, yesterday and today. That switch has been flipped and my head is full of thoughts of suicide. Both the thinking of reasons why it would be a good thing to do, and the grisly mental images of my skull shattered into a million pieces.

What can I do about this? Over the course of my life, over 22 years of horrible depression, I’ve tried many things: drugs, hospitalization, talking to friends, talking to spouse, calling a suicide hotline…and they all just make things worse. There’s nothing worse than having that tiny little spark of hope extinguished when you realize that no one can do a damn thing for you, and you’re trapped in hell.

Lost years

July 20, 2007

I’ve been feeling better lately — not quite as agitated or addled, less troubled by persistent unwanted thoughts. I still have bad days, and I still feel that old dread when my mood is up, knowing it will crash the next day, but on the whole I am functional rather than dysfunctional.

In an effort to better understand my condition, I’ve been reading a fair amount about bipolar disorder. Recently I bought a book called The Psychology of Bipolar Disorder: New Developments and Research Strategies, which is a somewhat dense read, meant for clinicians. The introductory overview was sobering. Reading it, I learned that:

Just under a half of patients first diagnosed as suffering from the disorder relapse within a year of recovering from their symptoms. Even when in receipt of adequate prophylactic medication, about three-quarters of patients can expect to relapse over a five-year period. Moreover, most individuals with the diagnosis continue to experience significant levels of subsyndromal symptoms in the periods between episodes…. Not surprisingly, quality of life in bipolar patients is poor, even in comparison with patients suffering from unipolar depression. It has been estimated that about a third of bipolar patients attempt suicide.

So the prognosis is grim even when a person’s been properly diagnosed and treatment is working. But a big problem with bipolar is that it often goes undiagnosed for many years: recently I read about a Harvard University study which “concluded that it may take an average of 12 years for bipolar II patients to get the proper diagnosis and treatment, if the patient survives the lag time.” People usually see the doctor when they’re depressed, but not when they’re manic or hypomanic, leading doctors to diagnose them with unipolar depression. I was first medicated for depression when I was 14 years old, and I finally got a diagnosis of bipolar disorder this year…so the lag time in my case was 22 years.

But the statistic I keep dwelling on is this: “[I]ndividuals diagnosed with the disorder in their early 20s, in comparison with healthy peers, are likely, on average, to lose 14 years of productive activity”.

When I look back on my life, there have been many years of lost productivity, punctuated by years of very high productivity. The pattern is now very clear to me and really cements my belief that bipolar II is the correct diagnosis.

I was a melancholy kid, introverted, extremely self-critical, sensitive. I was also an excellent student. I aced my first year of high school, when I was fourteen — I got the highest grades in many of my classes, and also participated in extra-curricular activities like school plays and the debating team.

But in the fall of grade ten, I got depressed and shut down almost entirely. I stopped going to school and my mother couldn’t force me to go — I just stayed in my room all day reading novels. Luckily, my teachers and the principal were positively disposed to me because I had done so well the previous year, so we worked out an arrangement where I’d do my work at home and hand it in every couple of weeks and then write the final exams: that way I didn’t lose any credits. In the second semester the depression lifted somewhat and I was able to attend school as normal.

But after that the debilitating depression hit me every fall, and earlier and earlier each time. I only mustered the motivation to get 7 instead of 10 credits in grade 11, but in grade 12 I dropped out entirely in the fall and didn’t go back that year.

But — I always wanted to go to university, even at my lowest points when I hated school with a burning passion, and if I was going to go on schedule, I would have to work extra hard to make up for all the credits I missed. In my grade 13 year (Ontario had grade 13) I took independent study courses during the summer, then course overload when I went back for my final year of high school. Not only did I finish all the courses I needed to finish, but I did exceedingly well in them — so well, that at the graduation ceremony I didn’t attend, I won three subject awards (Geography, History and Drama) as well as a “top student” cash prize and a bursary from the Sisters of St. Joseph.

I aced my first year of university, too, getting straight A’s (and an A+ in Roman history) while everyone else on my floor was having trouble adjusting to higher expectations and barely managing C’s.

The next year the depression hit again. I dropped out almost completely. I finished only two courses.

I figured the reason I was unhappy was that that particular university wasn’t the place for me so I transfered to the University of Toronto, but the depression appeared again…and again the next year…and again the next…forcing me to drop out of a number of courses, and then, in my “third” year, I quit altogether and went to Europe where I experienced a huge bounce in mood.

I came back exhilarated, and with a new purpose: I told myself that I absolutely had to finish my degree because otherwise I wouldn’t be able to go traveling again. Just like my last year of high school, I studied over the summer and took course overload so I could finish. And again I completed my courses with extremely high grades and won an award for top philosophy student at my college.

It’s too tedious to recount the ups and downs of the post-BA years — suffice it to say that I lived the same pattern of debilitating depression at some times and extremely high achievement at others. More recently, highly stressful academic programs in Vermont and Cairo created a situation in which I was doing well academically but couldn’t handle the pressure psychologically, so I started breaking down all the time. I almost had to leave both programs, but in both cases, supportive teachers urged me to tough it out. I’m glad I didn’t quit, even though the psychic damage was horrible and the loss of face humiliating.

And then, this past year, I had to cope again with the debilitating depression. I should have finished my degree last year, but I didn’t. I should have made a decision about where I was going to live…but instead I kept deferring the decision by a month here, two months there, until I find myself now, a year later, with very little to show for it. Another lost year.

All told, I estimate that I’ve lost about eight or nine productive years. Eight or nine years down a sewer. Eight or nine years of my youth — the time in a person’s life where they’re supposed to be laying the foundation for their future career as well as forging relationships and developing various skills and interests. The infuriating stop-start character of my academic life meant that I wasted a lot of precious time that I’ll never get back.

And where other, normal, people were finishing their degrees in four years like they were supposed to, it took me 7 years to do my BA; almost 3 to do a 2-year Master’s program in Philosophy; and several years to finish the current Master’s…if it ever does get finished, that is.

I survey all the wreckage in my life, and it makes me angry. It took 22 years for a psychiatrist to figure out that I didn’t have ordinary depression and in the meantime I was made so much worse by the antidepressants and the fruitless talk therapy. Any one of the psychiatrists I saw during the last 15 years or so should have clued in when the SSRIs plunged me into a living hell of near-constant agitation and suicidal thoughts — in my reading I’ve discovered that it is well known that bad reaction to SSRIs can often indicate bipolar disorder. This is not obscure information.

I often wonder what my life would have been like if I had been properly diagnosed much earlier. What could I have accomplished if every year was like those good, productive years? Where would I be now? What kind of life would I have? It should be too depressing even to contemplate, but I still wonder about it every day.

Update

May 17, 2007

Wretchedly, wretchedly depressed at the moment.

Weird side-effect

May 17, 2007

I have a weird side-effect from the Seroquel: about 45 minutes after I take it, I get super drowsy, I can’t focus, and my motor skills decline rapidly. None of those are the side effect I’m talking about. No, the weird thing is that I suddenly get incredibly winded and can’t breathe, like I’ve just run around the block ten times.

200mg

May 8, 2007

I’ve been on 200 mg of Seroquel for two days now. I’ve slept about 9 or 10 hours both those nights. So, not too bad.

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