A psychiatrist with whom I sometimes chat amicably on Twitter once commented that it’s helpful when people with lived experience of psychiatric treatment share our stories. Someone replied that telling our stories is tiring. What follows is an example of why. Our stories as we would tell them don’t fit neatly into the box of an assessment appointment. I wrote this story for myself, and for my own reasons, and honestly don’t expect many people to read it given its length. I will however be touched if anyone makes the effort to do so — even if you don’t succeed :).
As told here the focus is on treatment, with lots of medication details, because I want to document what has worked for me. I also mention some key psychological shifts achieved through psychotherapy that I believe have been very important in changing how I experience my bipolar brain. The significance and power of psychotherapy in my treatment journey will eventually get its own post.
Every January I remember the first shuttle disaster, in 1986. Late on the morning of that day, I sat in a departure lounge at Kennedy airport. My dad, a frequent flyer, knew a flight attendant who told him confidentially that we had not boarded because the shuttle had exploded.
My own life had also recently fallen apart. The previous December I had finished my first semester at university and had done well. I was filled with anticipation and excitement about a job my father had found for me in New York City for winter break. I moved in with relatives in a nearby New Jersey town for Christmas and commuted to Manhattan. After doing the job for only a few days, I quit in a fit of idealistic pique. I objected in principle to picking numbers out of a phone book to do what I believed should be demographically stratified sampling (I was an impractically moralistic 18). After quitting I went through weeks of growing sadness and other unpleasant feelings as I realized I wouldn’t find another job. I brooded on being openly gay and having to return to violently homophobic Jamaica when my US studies were done.
When the day arrived thoughts of my return to campus made me happy and excited again. My trip back became the finale of the excitement-disappointment-
I had changed rooms in December and my new room was undecorated, with no sheets on my bed and my belongings in a pile. I tried writing in my journal but only managed a few sentences which don’t make much sense now. I remember struggling, probably only for a few minutes, to try to settle down to sleep and then, instead, avoiding my cold room and wandering. First I walked around the halls of my dorm. Then at some point, I walked outside, thankfully very warmly dressed. I don’t know how long I wandered outside. My memory is of overwhelming feelings of transcendence and bliss … and a compulsion to walk. I ran into friends and recall at least one odd conversation with references to magic. It’s not clear how much sense I made when I spoke.
Eventually, having wandered in the cold, for at least hours and possibly almost a day, I ran into someone who knew me, but not well. He was a senior psychology major. He realized something was seriously wrong and took me to the health centre, which was completely empty given that it was night and the very start of the semester. I clearly remember the professional on duty writing a large Greek ‘psi’ on her pad and showing it, with some concern on her face, to my friend. An ambulance was called. I clearly remember thinking that the friend who accompanied me to the hospital was Jesus. His name was George. I still have the winter scarf he loaned me. Thank you, George, who knows what might have happened if you hadn’t taken me into Gannett that night.
Within a few days of arriving on campus, I was sitting in an emergency room in the middle of the night. I have an improbable image of a large bank of medical examination lights over my head as a psychiatrist evaluated me. He put me on chlorpromazine, an antipsychotic. It knocked me out.
The morning after my first dose of Thorazine, I woke up to my new life as a crazy person.
Thankfully, I guess because I had not been aggressive and my university self-insured students, the hospital had discharged me to the university’s well-appointed health centre. There was likely a protocol around these situations determined by risk, liability and especially, cost. In this case, it worked in my favour. Instead of a psych ward, I woke up on campus, in a pleasant, quiet room with large windows and a sweeping view. I could see the snow-covered hillside on which I had recently been wandering and the town, lake, and countryside beyond. At that point, I knew where I was but I had few memories, certainly none of the prior week. My fingers smelled of smoke — an olfactory hallucination. Absent memories I somehow concluded I had set the university residence I lived in on fire. The clear, if fragmented, recollection that I offer here only returned gradually over the following weeks.
It took more than a year but eventually I understood what happened as a brief but intense experience of mania followed quickly by psychosis and successful treatment with antipsychotic medication. Unfortunately when I returned to Jamaica the things my new psychiatrist chose to go on were my vague but certain family history of serious mental illness and my medication. I suspect the fact that I was openly and unashamedly gay, and that he moonlighted as a Baptist minister in homophobic Jamaica, made him reluctant to take my history. Instead, he diagnosed me as schizophrenic, although I had no voice-hearing, no further hallucinations and I suspect not even delusional thinking — except perhaps, from his point of view, my lack of shame or remorse around my homosexuality.
The year that followed was the worst of my life.
Eager to return to university I diligently took progressively higher doses of the antipsychotic trifluoperazine and other meds which became an awful experience: gain of more than 25% of my previous body weight, sedation to the point of catatonia, an experiment with thioridazine, another antipsychotic, which led to nightmares from which I awoke, shouting.
When after a year I had not improved my psychiatrist wanted to admit me to a psychiatric ward.
My mother refused, having seen her mother in similar circumstances. Thanks to overmedication I was sometimes a catatonic lump, but I was neither aggressive nor unmanageable. I don’t know if electroconvulsive therapy (ECT) was discussed but chances are it was and my mother also refused. I know she has vivid and unpleasant memories of seeing my grandmother right after ECT. Finally, again in January, I was transferred to “day-hospital” as a compromise. Most fortunately, I was released to the care of a new psychiatrist. I don’t remember how much of my history he took but for some reason he decided to stop most of my medication (at that point butriptyline, trifluoperazine, benztropine and occasional diazepam), particularly the antipsychotic, and started me on lithium. I continued in day-hospital for a couple of weeks, improved rapidly, and found myself a simple job as a gardener at the local botanical gardens within a month.
The first psychiatrist I had upon returning to university reflected on my misdiagnosis with schizophrenia and confessed that sometimes psychiatrists reach a diagnosis based on what medication appears to help. He admitted that doctors did not understand how drugs worked but that sometimes they helped, and that trial and error was the only way we would find drug treatments to help me. Some people might take this as a reason to dismiss psychiatry, but I did not. I valued his honesty and humility. As a child, I’d taken a keen interest in science, my parents allowing me a small room of my own for my “laboratory”. Rather than question the whole edifice of psychiatry, I took the psychiatrist’s message to heart and recognized that the rest of my life was going to be an experiment with me as the subject.
I am only recognizing clearly as I write this that I internalized the doctor’s message in a way that placed me in control of my care from that point on. I was okay with doctors not knowing what was going on, but if we were experimenting, I was going to be in charge. Chemistry was my first scientific love so despite my early, horrible experiences with antipsychotic meds, over the years I have come to try over two dozen psychotropic medications. Definitely, with one egregious exception, in consultation with both doctors and pharmacists, but also, almost always, with decisions about which medications, and even sometimes at what doses, directed by me.
In the three decades since the shuttle fell out of the sky, through keen observation I have learned to manage my clinical mood.
Although I use a variety of strategies, all of them depend on developing a very keen awareness of when my clinical mood (which is not about feeling happy or sad) is changing. Medication is helpful and I would not want to cope without it. But after almost thirty-five years of experience, how I use psychotropic drugs might make many doctors uncomfortable. A framework of manic depression (a term I still prefer to bipolar disorder), and keen self-observation, enabled my early understanding that sleep was critical to mood stability. I consistently made sure to take medication if necessary to get it. Even on daily mood stabilizers (so far I have tried four — lithium, lamotrigine, lurasidone, and aripiprazole) cyclical mood fluctuations continued. Over time I gradually reached the conclusion that for me, medicating around sleep and subtle mood changes was actually more important than taking a mood stabilizer daily.
Please note that this is my experience, it is not an approach that I advocate for everyone. This story is about the value of taking ownership of treatment, not what exactly that treatment should look like. It will be different for each of us. Also important is to recognize that I am very fortunate, so far, not to have noticeable withdrawal effects to medications. This is not true for everyone. The experience described here would be different if withdrawal was something I had to manage.
Thankfully although my one manic-psychotic incident qualifies me for a bipolar 1 diagnosis, I don’t seem to have a particularly severe form of the physiological condition (and at a fundamental level, I do experience bipolarity physiologically): all of my experiences with mania and hypomania have rapidly responded to medication. This is not true for everyone. I know of someone who, despite trying to reduce polypharmacy, only stabilizes on a battery of five medications: lithium, lamotrigine, two antipsychotics and the occasional benzo. And I also know that some people can take massive amounts of antipsychotic medication when manic with little effect (word on the street is quetiapine is particularly ineffective in ending this acute state). While I have had anti-manic success with lurasidone, my guess based on my limited but direct experience is that the first generation antipsychotics are more effective at arresting full-blown mania.
Lithium was my introduction to the possibility of unorthodox use of medication.
Prior to lithium treatment, the combination of trifluoperazine and tricyclics made me very thirsty. By the time I started lithium I had developed the habit of drinking several litres of water a day. Perhaps for that reason, I was never able to get my lithium levels much above 5 mEq/l — even at doses of 2,400mg of lithium carbonate a day. Lithium dose is usually adjusted in order to achieve a significantly higher blood level, however I was rarely able to reach, much less stay, in what is considered the “therapeutic range”. Thankfully, rather than prescribe daily lithium doses in excess of 3 grams, my doctors observed that I was doing well enough and didn’t push the therapeutic range goal.
Even at daily doses as low as 900 mg, I did have some side effects — mostly tremor and hair issues. They were considerably more tolerable at 900 mg than at 2,400. I learned to negotiate with my doctors and for most of my second decade on lithium, I kept to doses of 900 – 1,200 mg. Just as raising the dose only resulted in modest blood-level increases, lowering didn’t have as large an effect on lithium levels as I would have thought. My blood levels were always between 4 – 6 mEq/l (there might have been the odd test when I hit 7) with daily doses ranging from 900 – 2,400 mg in the first decade, and 900 – 1800 mg in the second. I learned to adjust my lithium dose depending on what was going on, titrating up to higher doses for a few weeks or months when I felt life was particularly challenging or my mood felt “unstable”.
Lithium was an interesting medication.
At the highest doses (still relatively low serum levels) it felt like experiencing the world through a wad of cotton wool. At lower doses, it was harder to spot a psychological effect but I have no doubt that it was helpful. One thing that I came to wonder was if low-serum lithium actually caused my mood to cycle more rapidly. While on lower doses of lithium I would go through regular, quick cycles: a day or two of mild hypomania, always successfully arrested with sleep medication, and a week or two of depression, severity determined by circumstances, all over a wider course of four to six weeks. At the highest doses, the length of these cycles seemed to extend (and to some extent, because of lithium I simply felt everything less). Cycles are sometimes much longer (3 – 9 months) when I have been off of daily mood stabilizers completely.
Conditions set by the health centre that approved my return to university normalized weekly talk therapy for me. I now have close to thirty years of experience seeing someone, usually weekly, for talk therapy of some kind. Some therapists were more skilled than others. Six were psychiatrists. I don’t think I ever saw a psychologist but I don’t actually remember the qualifications of my therapist in university. Most were helpful. I ended relationships that were not. The exceptional therapists tended not to be psychiatrists. At 38 I began seeing a medical doctor with psychotherapy training who was recommended to me by a friend who was also a therapist. Paul and I have now been seeing each other, usually weekly for an hour, for 14 years. As a doctor, but not a psychiatrist, he will prescribe medication but, aside from antidepressants, only within the ambit of recommendations made by psychiatrists.
After a few years of weekly psychotherapy with Paul, my episodes of hypomania, which I used to experience two to six times a year, diminished and then stopped altogether. Depression remained a challenge but presented and impacted me differently from before. Two key psychological changes thanks to therapy were that I eventually completely overcame significant problems with insecure attachment, and I developed a deep sense of intrinsic self-worth.
Healthy self-esteem is a positive thing, however, it is contingent on judgements or conclusions about oneself. Intrinsic self-worth is a deeper grounding in the certainty of my worthiness of love, dignity and respect simply by virtue of existing. In my case, I base this on a conviction that all human beings are so worthy. To me, espousing this belief is what fundamentally distinguishes humans from other animals. It is impossible to know if the changes in the presentation of my bipolar brain, such as the cessation of hypomanic spells, were the result of psychotherapy or just the passage of time. However, I deeply believe that these two psychological changes, and particularly my sense of self based on intrinsic self-worth, played and play a significant part in changing if and how I experience elevated mood states.
After twenty years, I became concerned about the risk of organ damage and stopped lithium.
I did research on options and chose to move on to lamotrigine. The psychiatrist I was seeing at the time for therapy prescribed for me but for sure I did the research, discussed it with both my psychiatrist and my family physician, and chose lamotrigine over other possible mood-stabilizing meds. After a few years on lamotrigine, I also stopped that (I failed to fill a prescription because I could not afford it and then, given the tedious process of starting lamotrigine, I instead decided to stay off of it and wait and see what happened). I seemed to manage okay without the lamotrigine. My mood oscillated but not to a degree that I felt uncomfortable with. No matter what mood-stabilizing meds I took, depression was often a challenge.
Intermittent medication for sleep continued to be imperative. Initially, I used diazepam and then triazolam for sleep. When triazolam was pulled from the market I started to use clonazepam (0.5 – 2mg, usually 1mg) as my sleep drug of choice. Sometimes two months would go by with no need, sometimes I’d take it three times in a month. To avoid addiction I never took it more than two days in a row (again, no doctor ever warned me in this regard, I made this determination based on my own research). I believe that the thing that enabled me to avoid mania was medicating consistently, aggressively, and effectively for sleep.
Eventually, in my late thirties, when I consulted psychiatrists, some disagreed with my bipolar 1 diagnosis because for decades I had successfully avoided mania, even when off of daily mood stabilizers. It’s an odd but revealing paradox in psychiatry around schizophrenia and bipolar disorder that if treatment succeeds and you get to the point of not needing daily medication, psychiatrists will doubt the original diagnosis. Not only can this complicate or deny access to the very care that is keeping someone well, it also implies doubt about a person’s account of prior experiences and symptoms which were likely major life events when they occurred. This doubt compromises the integrity of a therapeutic relationship and is an unintended consequence of how psychiatric diagnoses tend to be operated and understood.
Despite what some psychiatrists said I never doubted that I could become manic again. My first experience of mania was not in itself traumatic, but it almost cost me a life-changing full-scholarship to university, so unlike some, I have no desire to experience mania again. That remains true despite a subsequent manic experience with consequences very different from my first.
About a decade ago, in my early forties, having started a small garden business where I was largely working alone, attention and focus, rather than mood, became my primary functional concerns. A friend happened to share her experience of being diagnosed and treated for adult ADHD and I saw a lot of similarities in what she was describing. I went to see her psychiatrist. By then my spells of hypomania had stopped, though depression was at times a concern. My new psychiatrist disagreed with my bipolar diagnosis and concluded that my university experience had been an episode of “brief psychotic disorder”. He also diagnosed and started treating me for ADHD. I tried various formulations of stimulants for two years and only became hypomanic once, even off of mood stabilizers (but again, medicating aggressively for sleep). Unfortunately, the benefit I experienced on stimulants was not the night-and-day change that a significant number of adults who take stimulants for ADHD have. Benefits were more subtle (I misplaced my keys less frequently) and eventually adverse effects became odd and intolerable, so after a couple of years of trying many permutations and combinations of methylphenidate- and dextroamphetamine-based meds, I stopped them completely.
Over the decades, alongside mood stabilizers, I have tried a dozen antidepressants.
That number doesn’t include stimulants or lurasidone and lamotrigine, which also have an impact on depression. While most medications help with depression for a few months, they all eventually stop working. At some point, I learned about drug holidays and now, if I need antidepressants at all, I will rotate between three favourites: bupropion, escitalopram and moclobemide (an ancient antidepressant that I cannot recommend enough), with washouts where appropriate. After a break, antidepressants will work again, though not for long. Stimulants also affect mood though their impact is different than that of most traditional antidepressants. As I write this I am taking, on the recommendation of two psychiatrists (one a psychopharmacologist), 200mg modafinil daily to help with avolition and anhedonia. I am not certain of the benefits (there are non-medical reasons which explain my improvement) but there are no noticeable side effects so I continue.
Six years ago I became concerned about the possible long-term effects of my use of clonazepam
even though it remained intermittent. So in an effort to find alternatives I consulted a well-known psychopharmacologist. Up to that point, based on my horrible early experience with trifluoperazine, I had vowed never to use antipsychotics again — even creating an advance directive to that effect that I lodged with my local psychiatric hospital. (To give you some idea of how unpleasant high-dose antipsychotics can be, I consented in advance to restraint over antipsychotic use.) However second-generation drugs had now been around for a while (another rule I generally follow is that I stick to medications in use for over a decade, whose adverse effects are more likely to have become evident). I was curious about a few of the second-generation antipsychotics as clonazepam alternatives, lurasidone being first on my list because of its reputation for tolerability.
I brought the list of medications I was interested in to the psychopharmacologist. He had no problem with my approach. He was less willing to dismiss my bipolar diagnosis entirely and described me as being on the “bipolar spectrum”. Given that I seem to have a form of the condition much more manageable than some, I thought this a wise and respectful compromise. He recommended a series of treatment options. For ADHD he recommended Biphentin, which I hadn’t tried before, and concurred with three possible newer antipsychotics, two that I had approached him with questions about (lurasidone and asenapine), plus aripiprazole. He recommended daily, not episodic, antipsychotic use for mood management.
Over the following three years Paul, my MD psychotherapist, and I went through these treatments, trying different combinations based on the recommendations, which we initially followed quite closely. Based on these recommendations I once more tried and then eventually rejected, daily use of lamotrigine. The dose the psychopharmacologist recommended — 450 mg — was almost double what I had tried years before. After months of gradually titrating upwards, I remember feeling unusually strong feelings of wellbeing, which I noted to Paul. Unfortunately, the feeling didn’t last. Within a month the remarkable feeling of wellness was gone. I was not pleased. I do remember that when I finally stopped lamotrigine for the second time it felt like a shroud lifted. When a glimmer of hope emerged I suspected that while lamotrigine and lurasidone are more subtle than most, all the mood-stabilizing medications I had tried taking on a daily basis curtail the ease with which emotions such as hope and excitement are experienced.
My doctor is a huge believer in patient choice and finding the minimal effective dose when it comes to medication
— hence the tremendous latitude I describe above. He accepted my decision, after trying daily therapy with lurasidone for a few months, to switch to as-needed use as I had used clonazepam. On a follow-up visit, the psychopharmacologist called my as-needed use of lurasidone “a crime against psychopharmacology”. His take amused me since I was fairly sure that there was no research to support it and I also know that antipsychotics get used on an as-needed basis with inpatients quite regularly.
Alongside my experiments with mood stabilizers and antidepressants, I also tried Biphentin.
All initially according to the directions of the psychopharmacologist. Biphentin provided some benefit but not so much that I felt I needed to take it forever. I thought maybe I would hold it in reserve for times of intense work demands. In February of 2017, after three years of trying different med combos, including Biphentin, I was once again off of daily mood stabilizers and antidepressants and the only medication I was taking was as-needed lurasidone, based on times when my mood suggested it, usually through changes in my ability to sleep. I was not depressed but once more frustrated by my focus and attention issues and my MD psychotherapist and I agreed that I would try Biphentin one more time (I think it may actually have been his suggestion). I had some from when I had last used it, a few months prior.
After more than ten years of negotiating medication use between us, my MD psychotherapist trusted me and we’d been through the titration phase with Biphentin twice before. He assumed I would do what we had always done. I can’t remember exactly at what point I decided to make other plans. These plans were a betrayal of his trust in me, but I couldn’t tell Paul what I was going to do because he would have said no. And I certainly would not betray his trust in me by disobeying his explicit instructions. Better to ask forgiveness than permission. Some doctors have a hard time accepting that patients make our own decisions, intentionally or accidentally, about how we take medication. In my experience, the best doctors always acknowledge that the choice is mine.
I decided that instead of starting at a lower dose and gradually increasing over weeks, I would take a single large Biphentin dose and see what happened. My thinking was that maybe my failure to achieve those elusive dramatic changes in ADHD symptoms was dose-related. Also during my previous two trials of Biphentin, I’d been on different concomitant meds that I was no longer taking. What better way to test the dose hypothesis than to take a significant amount, at once, along with nothing else, and see what happened?
Mania was something I had assiduously and successfully avoided for decades, and unlike some of my doctors, I certainly believed it could happen to me again. Despite the fact that stimulants had rarely precipitated hypomania for me in the past I knew that taking a stimulant, especially in a large dose, posed a real risk of mania and possibly psychosis. However, I had lurasidone, an antipsychotic, which I was quite prepared to take. I prepared emotionally for the possibility of being admitted to hospital (I had spent time in local wards before, but not as a patient). My prior experience of mania and psychosis had been hugely disruptive, but it hadn’t actually hurt me or anyone else. And I work in a seasonal business and was off work at the time. So I enlisted the support of a friend with their own history of mental health challenges to check in with me every few hours and monitor me after I took the single Biphentin dose. This was an experiment and I was going to take only one dose. Previously I had topped out at 80 mg; the psychopharmacologist had recommended a maximum of 100mg. After about a week of thought and preparation, I took a single dose of 120 mg of Biphentin.
What happened next is its own story (more interesting and unusual for sure) which I will write eventually. (I have since done so, here.)