Theories about stimming

Whatever you want to call them — stims, repetitive behaviors, stereotypies — the terms are more-or-less interchangeable, but it remains that they are of importance in how we think about autism. The repetitive behavior/restricted interests domain is essential to an autism diagnosis. Autistic people, when asked, mostly seem to believe this is an important part of autism. Strangely, very few people have undertaken empirical research to validate (or challenge) common ideas about the nature of stimming.

For those who don’t know: what is stimming? There’s actually some variation in what people consider stims, but I think most people would agree that it includes rhythmic, repetitive movements of the body such as rocking, hand flapping, and pacing. Many people include vocalizations such as grunting or whistling. Based on the conventional description of some autistic children having a fascination with parts of objects (like the wheels on a toy car), I feel manipulation of items such as fidget toys and spinners should be counted as well.

Wheee!

Of course, then we’re get into restricted interests territory. Restricted interests and repetitive behaviors are counted in the same “domain” in the DSM, along with sensory atypicalities. In my view, they blend into each other, forming a continuum — but more on that later.

If you asked me, I’d say there’s a lot we don’t know about this topic. A lot of people have beliefs, for sure, but there’s little to no real evidence. At least, not the kind of evidence you can cite.

Most of the knowledge that’s out there comes from the beliefs of autistic community members. Dr. Steven Kapp (who is, coincidentally, a friend) did a qualitative analysis of 31 autistic people’s opinions on stimming.1 Nobody said they disliked their stimming; most people said they found it calming. The study thusly found that stimming most likely serves a regulatory function, and identified three factors that autistic people said caused their stimming behavior: overwhelming environment/sensory overload, noisy thoughts, and uncontainable emotion.

It’s interesting to me that nobody in this study mentioned under-stimulation of sensory input.1 They seemed more to believe that stimulation in excess of a certain individual or situational threshold was the primary cause, and in this case the “stimulation” could be an internal stimuli (a thought or an emotion).

It’s such a simple theory that it seems baffling that nobody has really tested it. Why is that important? Well… sometimes, as humans, things aren’t what we expect them to be. I know a lot of people will react negatively to that sentiment, but I’m autistic too, so it really is an everyone thing. A lot of psychology (ex, cognitive psychology) is actually not self-evident, and may be counter-intuitive. For example, people are not particularly good at judging how they best learn. People overestimate the benefit of massed rehearsal (cramming for an exam) because they feel like it helps them remember more than spaced rehearsal (studying every night), even after seeing evidence that spaced rehearsal results in better task performance.2

Don’t get me wrong, metacognitive insight is valuable — it’s my own greatest weapon! — but it helps to have evidence to back it up. (Likewise, it helps to have qualitative information to back up empirical results.) So why don’t we have studies about this?

Massed practice is inferior to spaced practice, even though you think it’s not.

One study that has been done (although, again, not an empirical study) used Bayesian statistical principles to think about the mechanisms of cognition in autism.3 They concluded that autism features atypical accuracy of predictions — or, more precisely, that they did not use as much prior knowledge in their perception, leading to potentially more accurate perceptions of the world. However, this makes ambiguity and uncertainty very difficult to deal with. The authors use this framework to understand stimming as a means of reducing the uncertainty in the environment, and thereby reducing the sense of alarm or sensory overload experienced by that person.

As I mentioned, repetitive behaviors blend together with restricted interests. Something I’ve become interested in is the role of perseverative or repetitive thoughts and its relation to the role of repetitive behaviors. I explored this idea a little bit in my first paper,4 but I have yet to truly investigate my thoughts on the matter as much as I would like. Here’s my underlying theory: autistic children, as children, have both repetitive behaviors and repetitive thoughts. Normally, these two processes inhibit each other. This seems to corroborate well with the accounts of “noisy thoughts” being a precursor for stimming behaviors to control them.1 However, when children with normative verbal ability become older, they stop doing repetitive behaviors — leading to increased repetitive thoughts, which my study found could be a risk factor for developing depression.4 This might explain, at least in part, why rates of depression are highest in autistic adults with more normative verbal ability. And it lines up quite well with what the autistic people in Kapp’s study said: they identified others’ tolerance of their stims as a matter of acceptance vs. devaluation.1

Do you have any theories?

References

  1. Kapp, S. K., Steward, R., Crane, L., Elliott, D., Elphick, C., Pellicano, E., & Russell, G. (2019). ‘People should be allowed to do what they like’: Autistic adults’ views and experiences of stimming. Autism, 23(7), 1782–1792. https://doi.org/10.1177/1362361319829628
  2. Logan, J. M., Castel, A. D., Haber, S., & Viehman, E. J. (2012). Metacognition and the spacing effect: The role of repetition, feedback, and instruction on judgments of learning for massed and spaced rehearsal. Metacognition and Learning, 7(3), 175–195. https://doi.org/10.1007/s11409-012-9090-3
  3. Pellicano, E., & Burr, D. (2012). When the world becomes “too real”: A Bayesian explanation of autistic perception. Trends in Cognitive Sciences, 16(10), 504–510. https://doi.org/10.1016/j.tics.2012.08.009
  4. Keenan, E. G., Gotham, K., & Lerner, M. D. (2017). Hooked on a feeling: Repetitive cognition and internalizing symptomatology in relation to autism spectrum symptomatology. Autism, 2012, 136236131770960. https://doi.org/10.1177/1362361317709603

Dreams & Interpretations (part 1)

I didn’t used to have a lot of dreams. Over the past few years, I’ve starting having more, some of them very vivid and strange. In this series of blog posts I’m going to attempt to find common themes within these dreams. I’m not analyzing them in the psychoanalytic sense; I’m merely looking at the composition of the dream and how it relates to itself and my life.

Body Horror

Dream: I’m suddenly unable to talk or make any sounds. I try to cry for help, but no sound comes out. I open my mouth and feel a string coming out of it. Slowly, I pull the string, and realize that a tampon is lodged in my throat. I gag and continue pulling the string, and eventually the tampon comes out and blood gushes out of my throat. I wake up.


Interpretation: This is actually a recurring dream I’ve had, although I haven’t had it for quite some time. It’s probably the one of the most aggressively transgender dreams I’ve ever had.


Safety Checks

Dream: I wake up in the middle of the night in a hospital bed. Dark, shadowy figures appear in the little window of my door and then vanish. I wake up.

Interpretation: Another recurring dream, often at the end of other dreams, like the first one. This one I used to have after my discharge from South Oaks Hospital. I didn’t like it there, and this dream (a fairly accurate representation of nighttime safety checks) was the result of my stress.


Trust Issues

Dream: I wake up in my hospital room to an electronic jostling sound, like an InkJet printer, coming from the vent above my bed. I go to get my vitals taken and eat breakfast in the day room, mentioning to a nurse that there was this weird sound in my room. I retire back to my bed. Two people step into the room, wearing white coats, and I expect them to be doctors — but I don’t recognize them. One of them pins me to the bed and the other injects me with a strange liquid, which makes the world hazy. I realize that these people must be scientists and the InkJet printer sounds must be their machines. Their injection was supposed to make me lose my memories of it.


I wake up later in the day, with my memories still intact — the serum didn’t work. Thankful, I decide I better contact someone. I call my psychiatrist on the phone and tell her that alien scientists are on the ward. “There are?” she says. “How do you know they’re scientists?” The white coats, I tell her. She assures me she will get to the bottom of this, but as we hang up, I realize my mistake: the alien scientists will simply wipe her memory.


I walk back to my room, but am confronted by the scientists in their white coats; I run in the opposite direction only to be stopped at the double locked doors with their “AWOL RISK DO NOT OPEN” signs. I laugh. Since their injection didn’t work on me, they’ll have to kill me. “I guess being killed by aliens is a pretty cool way to die,” I say. Suddenly, a beam of white energy enters my body and comes out through my palm, striking one of the alien scientists. He crumples to the ground, and his body slowly changes, reverse-aging until he is merely a fetus on the ground.


Interpretation: It seems fairly evident that the “alien scientists” in their white coats and brandishing IM injections are a stand-in for psychiatrists. What complicates that, though, is the fact that when I am looking for someone I trust to call, the first person I think of is my psychiatrist. So, there seems to be a distinction between trustworthy and untrustworthy psychiatrists. The reverse aging beam seems odd until it is considered that at the height of my psychiatric crisis I was age regressed into the mind of a child (an older child, I’d say 10-12 years old). In a way, what I inflict on them was the same pain I’d experienced myself. This might be a metaphor for opening up to them.


I’m lucky to have my bipolar disorder

There are times that I’ve felt cursed by having ultra-rapid-cycling, somewhat-atypically-presenting bipolar 1 disorder. My mood episodes are short (sometimes as short as one day, although usually lasting a few days to a week) and they can be very intense. I also suffer from mixed episodes, which are agonizingly painful to experience, and at times I have had profound suicidality that has led to multiple suicide attempts — one of which left me in a coma for three days and nearly claimed my life. Doctors said I wasn’t going to make it. But I did.

During the worst of times I’ve wished to have “classic” bipolar disorder instead of my bipolar disorder. In truth, “classic” features may be relatively rare; but it conjures the idea of long, bleak depressions punctuated by shorter, but still somewhat long, grandiose and euphoric manias. Separate and distinct periods of each, usually lasting for months at a time, with bouts of clean euthymia (wellness) in between.

I haven’t really experienced prolonged euthymia, instead merely catching glimpses of it over the course of my continuous ups and downs. My manias are “dirty” and dysphoric, tainted with depressive themes. My hypomanias are very productive; but if my mood spikes too high, my thoughts become dark and gruesome. If I were to jump off a building, it would be to kill myself, not because I believed I could fly.

And I’m also a researcher. Without a doubt, my research in the area of bipolar disorder draws upon my insights as a bipolar person. If I had “classic” bipolar disorder, the research I have done (some of it relying theoretically upon data collection of my own personal changes in mood) would not have been possible. Because I’m an ultra-rapid-cycler, I was able to capture long-term patterns that might take many years to become evident in “classic” bipolar disorder. I believe the same patterns exist in both, but when moods last for months at a time, it is harder to see those patterns.

My ability to detect patterns has served me well in life (including in my professional career) and to some extent, my bipolar disorder trained me to do it. Predicting my own mood was not only possible, thanks to the accelerated timeframe, but essential to my ability to cope with them. Part of the devastation of mixed episodes came with the loss of my ability to predict with reasonable accuracy when moods would peak or change and in what direction. Even so, I learned new patterns and slowly became able to tell what a “mixed episode” felt like, and whether I was experiencing one. This was not something I could do at first.

Insight into the emotions, cognitions, and memory issues that come along with my bipolar disorder developed over time, starting at an early age (as I first developed symptoms around the age of 10). In turn, this level of insight has allowed me to hypothesize connections no other researcher has yet seen. I understand firsthand how bipolar disorder intersects with changes in thinking and memory.

I have the opportunity to discern cause and effect in relation to changes in my mood much more easily than someone with “classic” bipolar disorder, thanks to the immediacy of any reactions. Upon hearing from my psychiatrist that nitrates in beef jerky were causally linked to mania, I took note of my own reactions. I had known for quite some time that beef jerky had a stimulant-like effect on me, but I was surprised to learn it did not have this effect on everyone. (Too bad!) I experience this stimulant-like effect almost instantly, while I’m still eating. The temporal proximity of the cause and the effect makes them easier to distinguish.

My bipolar disorder is a blessing and a curse. I have struggled immensely to control it, but I wouldn’t trade it for “classic” bipolar disorder or no bipolar disorder at all. The knowledge and abilities I have gained as a result of my battle with bipolar disorder — my bipolar disorder, not someone else’s — have actually, truly been indispensable to my life and my career. Plus, that excessively productive hypomania is pretty good too.


What is the goal of psychiatric medication?

The goal of medication isn’t to make everyone neurotypical. That would be boring as fuck. — Dr. Coats (my psychiatrist)

Different psychiatrists no doubt have different philosophies about the point of psychiatric medication, and different patients have their own goals for treatment which naturally vary. To some people, bipolar disorder is a gift to be tamed; to others, it’s a curse to be extinguished. Regardless of whether you choose to take medication for bipolar disorder or not, you surely have your reasons for doing so. Many of these reasons seem to hinge on what the perceived goal of treatment is.

Some goals are specific: for example, “I’d like to be able to go back to school and get my degree”. Some goals, on the other hand, are more vague: “I’d like to be well again”. What does it mean to be well? Certainly, it means different things to different people.

As my psychiatrist, Dr. Coats, has said, the goal of psychiatric medication isn’t to make everyone neurotypical. There are some psychiatrists who may believe that the optimal outcome for everyone looks like neurotypicality (the complete suppression of bipolar symptoms to look like a “normal” person), but for many people with bipolar disorder this isn’t one of their goals. Furthermore, for many people with bipolar disorder it simply won’t happen.

This tends to happen.

One study that followed 258 outpatients, all of whom were taking medication, for one year found that 63% had four or more mood episodes within the year.1 26% were ill for more than 3/4 of the year. It seemed that medication was more effective at controlling mania than depression, as participants spent 3 times more time in depressive states than in manic states. A wide variety of drugs were prescribed to participants in this study, including mood stabilizers, anticonvulsants, antidepressants, benzodiazepines, and thyroid medications. The average participant took 4 different medications. Despite this, only 11% of participants were virtually free of mood symptoms. 89% experienced symptoms to some degree.

The study identified many subgroups of bipolar participants, each with a distinct pattern of recurrence (or non-recurrence) of mood symptoms. For example, of the 26% who were ill for 3/4 of the year or more, there were several subgroups: A) ultra-rapid cyclers who were essentially ill for the entire year, B) those with predominant depressive episodes (but experienced mood cycling), C) those with predominant manic episodes, and D) those who had chronic persistent depression with very little cycling.

Based on which pattern is most accurate to describe a given individual, it would be appropriate to adjust one’s goals and expectations for treatment with medication. When I’m ill, I’m closest to pattern A. My goals include slowing down my cycling, reducing the severity of mood symptoms and suicidal thoughts, suppressing my impulsivity and anger, and sleeping regularly each night. For someone with pattern D, goals might look a bit different.

Me without medication

I think it’s helpful to identify specific goals. This helps you determine if you’ve made any progress towards what you want to achieve, even if you still experience symptoms. For many people, resuming a completely normal life with no symptoms of bipolar disorder may be a futile effort — or an unwanted outcome. Even in my most well periods I experience cyclothymic changes in mood and energy levels. My work style is somewhat erratic, and I might stay up for 2 or 3 days working on a paper until it’s finished, then be unproductive for a month or two. My goals aren’t to extinguish these features. I’m not trying to be neurotypical. I’m trying to protect my life and reduce suffering.

Because while bipolar disorder can come with tremendous gifts, it can also be the source of unbelievable pain and suffering. Only you can decide how to reconcile that in your own life. And if stifling mood episodes completely isn’t your goal, that’s okay. It’s possible that you can still harness the benefits of medication to reduce suffering. I recommend being honest about your goals to your treatment team. A good psychiatrist shouldn’t be forcing neurotypicality onto you. Being bipolar in itself isn’t a bad thing.

Bipolar people are cool!

References

  1. Post RM, Denicoff KD, Leverich GS, et al. Morbidity in 258 bipolar outpatients followed for 1 year with daily prospective ratings on the NIMH Life Chart Method. J Clin Psychiatry. 2003;64(6):680-690. doi:10.4088/JCP.v64n0610

Was Vincent van Gogh autistic?

There’s no doubt in my mind that Van Gogh had bipolar disorder. He had many symptoms related to bipolar disorder: manic episodes, depressive episodes, hallucinations, sleep disturbance, substance abuse, memory problems, nightmares, and anxiety, to name a few from his asylum files.

Yet, additional diagnostic labels could help to clarify his overall presentation. One diagnosis that has been put forward is BPD. It does seem to explain some of the events of his life, for example, his heated interpersonal conflicts and fears of abandonment related to Paul Gauguin. However, a diagnosis of autism has not been seriously considered. This is interesting in light of the heightened prevalence of bipolar disorder in autism — an autistic person is as much as 8.5 times more likely to have bipolar disorder than a non-autistic person (this number assumes no intellectual disability and a diagnosis before age 28).1 Another study found that 7% of autistic people also had bipolar disorder.2

As a child Van Gogh was described by his younger sister as “intensely serious and uncommunicative, and walked around clumsily as if in a daze, with his head hung low”, and went on to say that he was like a stranger both to his siblings and to himself. A servant said he was “an odd, aloof child who had queer manners and seemed more like an old man” than a child.3 These are characteristics often ascribed to some autistic children, even poor motor coordination (dyspraxia).

Vincent was deeply intelligent, thoughtful, and demonstrated what seemed like the capacity to be successful, but as a young man he struggled to find a vocation that could accommodate him. He drifted from an art dealership (where he was fired for arguing with buyers), to a teaching job, to a minister’s assistant for a Methodist church, to a bookshop where he reportedly doodled and translated parts of the Bible into English, French, and German, to religious studies. He failed his entrance exam in theology and his missionary course. Religion was a special interest for Van Gogh. He was endlessly devoted and passionate about the subject, but his odd behavior made him an ineffective preacher, and he was not a good student.

Van Gogh had severe social problems which seem to have started early in his life. People repeatedly thought that he was odd, and they didn’t want to be around him. His peculiarities were off-putting. Children were scared of him. Scholars suggest that he did not understand the concepts of diplomacy or salesmanship, that he lacked insight into the thought processes of others, and lacked the ability to cognitively understand their emotions and motivations.3 He was emotionally dysregulated and prone to agitated or impulsive meltdown behaviors. As his interest in painting became more intense and all-consuming, he neglected maintenance of his body or appearance, appearing even more eccentric.

One of the highlights of Van Gogh’s medical files that has yet to be parsimoniously explained is his chronic stomach issues. In particular, gastrointestinal problems seem to be an important feature of autism4 although bipolar disorder may also be related to stomach problems.

Vincent van Gogh (Dutch, 1853 – 1890 ), Green Wheat Fields, Auvers, 1890, oil on canvas, Collection of Mr. and Mrs. Paul Mellon

Finally, there’s the most obvious trait of Van Gogh’s: his artistic ability. Many people have suggested that Vincent might have had some form of synesthesia. Further, I hypothesize that hue discrimination may, like pitch discrimination, be enhanced in some autistic people.5

A diagnosis of autism didn’t exist in Van Gogh’s time — in fact, wouldn’t exist for over 50 years after his death. Perhaps it’s not so surprising that the autism connection has been overlooked. Vincent van Gogh’s wild, reckless nature combined with intellectual and artistic sensibilities (and lack of mathematical talent) defies narrow stereotypes of autism, yet embodies a certain reality of it: he was thoughtful yet lacked insight, seen as a stranger by the world around him while experiencing the world as fundamentally strange, and possessed incredible gifts yet was understood as deficient. Maybe it’s time to look beyond famous scientists and mathematicians for autistic historical figures.

References

1. Selten J-P, Lundberg M, Rai D, Magnusson C. Risks for nonaffective psychotic disorder and bipolar disorder in young people with autism spectrum disorder: A population-based study. JAMA Psychiatry. 2015;72(5):483-489. doi:10.1001/jamapsychiatry.2014.3059

2. Skokauskas N, Frodl T. Overlap between autism spectrum disorder and bipolar affective disorder. Psychopathology. 2015;48(4):209-216. doi:10.1159/000435787

3. Butterfield, B. The Troubled Life of Vincent Van Gogh. Vincent van Gogh website. September 21, 2002. Accessed May 24, 2020.
http://www.geocities.com/Paris/Louvre/9633/VincentVanGogh.htm

4. Adams JB, Johansen LJ, Powell LD, Quig D, Rubin RA. Gastrointestinal flora and gastrointestinal status in children with autism – comparisons to typical children and correlation with autism severity. BMC Gastroenterol. 2011;11. doi:10.1186/1471-230X-11-22

5. Heaton P, Williams K, Cummins O, Happé F. Autism and pitch processing splinter skills: A group and subgroup analysis. Autism. 2008;12(2):203-219. doi:10.1177/1362361307085270


What do mixed episodes feel like?

For me, mixed episodes are the worst part of my bipolar disorder. It’s hard for people without bipolar disorder to comprehend how it could be that you feel mania and depression at the same time. It doesn’t have to be simultaneous, per se — it could just be very quickly alternating — but for me it is, at times, simultaneous.

In actuality, mixed episodes aren’t rare. The most common presentation of bipolar 1 disorder is a combination of depression and mixed episodes (32%), followed by the combination of depression and manic episodes (30%; Grant et al., 2005). Mixed episodes are also common in bipolar 2 disorder (Benazzi et al., 2004) although, understandably, these tend more towards the depression side.

To understand my own mixed episodes, I draw a distinction between physical and mental energy. Mania typically involves high levels of both physical and mental energy: you feel physically great, you never seem to get tired, and your thoughts and ideas might be racing around in your head. In contrast, depression involves low physical and mental energy: you’re tired and sluggish, you might be in pain, and your thoughts feel jammed like a printer that just won’t print.

Your brain on depression.

My own mixed episodes tend to feature low physical energy and high mental energy. I can’t sleep at night because my thoughts keep me awake, but instead of feeling ready to go in the morning, I feel tired and miserable. I may pace around because of all the energy inside my head, but my body aches constantly. I tend to become very preoccupied with suicide. Mixed episodes are the most dangerous time for me.

I also might have hallucinations during mixed episodes, and they’re distinctly unpleasant. One that recurs for me is the bugs. I start out by feeling them crawling on my skin, particularly when I lie down in bed to try and sleep at night. No matter how many times I meticulously check my pillow, I can’t find any bugs, but I know they’re there (and know they’re not there — simultaneously). At times, though, this has progressed further to actually seeing bugs everywhere around my apartment, and not being able to tell which are real and which are imagined (because there probably were some real bugs). I once came to the conclusion that not all of the bugs could be real because there were simply too many different species living in my studio apartment. On another occasion, I heard voices mocking me from inside my dishwasher.

Other times, I acquire some delusional or near-delusional beliefs. I have been absolutely convicted that I had AIDS in one instance, Parkinson’s disease in another. I don’t have either of these diseases, but I couldn’t be dissuaded from my belief, at least in the moment. When I believed I had AIDS, I even started writing goodbye letters.

Though I’ve never departed too far from reality, personally — just wandered a little bit astray. I’ve been underwater, but always close enough to see the light on the surface. Some people experience psychosis in a much more encompassing way. Hallucinations and delusions can be truly terrifying, even life-changing experiences. Mine seem a bit mundane in comparison. No angels, no demons… just bugs.

To my horror, I’ve probably seen most of these at some point.

One could also envision a mixed episode with high physical energy and low mental energy. This might result in a kind of catatonic state, probably an agitated catatonia. This is considered a very dangerous state in its own right because catatonic patients are less than fully conscious of their actions, and if they are very agitated, they could pose a risk to themselves and others around them.

Do you have mixed episodes? How do you understand them?


Benazzi, F. (2007). Bipolar disorder — focus on bipolar II disorder and mixed Benazzi, F., Koukopoulos, A., & Akiskal, H. S. (2004). Toward a validation of a new definition of agitated depression as a bipolar mixed state (mixed depression). European Psychiatry, 19(2), 85–90. https://doi.org/10.1016/j.eurpsy.2003.09.008

Grant, B. F., Stinson, F. S., Hasin, D. S., Dawson, D. A., Chou, S. P., Ruan, W. J., & Huang, B. (2005). Prevalence, correlates, and comorbidity of bipolar I disorder and axis I and II disorders: Results from the National Epidemiologic Survey on Alcohol and Related Conditions. Journal of Clinical Psychiatry, 66(10), 1205–1215. https://doi.org/10.4088/JCP.v66n1001


Memory in bipolar disorder

People with bipolar disorder commonly have memory problems. This is actually something I’ve been doing research about as a PhD student at UCLA. Not only that, it’s something I struggle with myself.

There are two main categories of memory problems in bipolar disorder: problems that are associated with a mood episode, and problems that exist outside of mood episodes (during euthymia, or well periods).

During episodes of depression, problems with explicit memory are common. That’s the kind of memory you’re using when you try to recall facts or events — in contrast to implicit memory, which includes emotional learning (conditioning) and procedural learning (like learning how to ride a bicycle). Implicit memory tends to be preserved, but depressed people struggle to explicitly remember things. For example, trying to remember the names of past presidents might become extremely effortful. This is actually the same for unipolar depressives. Controlling for the severity of depression symptoms, bipolar and unipolar depressives are very similar in the area of memory performance (Bearden et al., 2006).

Multiplication tables might be very difficult for a depressed person to recall

Memory impairments are more pervasive in manic episodes. Research has found that during a manic episode, people perform more poorly at tasks requiring episodic memory (the kind of memory you use when you remember a scene you’ve lived through, typically from a first-person perspective), working memory, spatial attention, and problem solving (Sweeney et al., 2000). Many people who have experienced manic episodes have a great deal of difficulty remembering what happened during the episode. It’s possible that mania disrupts the encoding of new memories (King et al., 2013). For some of us, this is a double-edged sword: it’s painful to remember, and yet it’s painful not to remember. Sometimes we’re left trying to piece together what actually happened while simultaneously part of us is trying to move on from it. Even worse, sometimes other people remember better than you do.

Problems with episodic memory aren’t limited to mania, though.

Various studies have shown bipolar people who are euthymic (not currently having a mood episode) to perform poorly at memory-related tasks. Problems with executive functioning frequently come up — these problems can be similar to people with ADHD. But one of the most noteworthy findings is impairment in episodic memory about one’s own life. In particular, it seems like memory for specific events is impaired, but memory for personal facts (like one’s name or birthday) are not affected (Shimizu et al., 2009).

It’s hard for me to remember a lot of things I’ve lived through. Not infrequently I meet people who tell me we’ve met before, but I have no idea who they are. I have friends that I don’t remember how or where we met. Even memories I’d like to keep seem not to stick very well, which is saddening. I forget most of what happens after a year or two. Sometimes the things I do remember are a little strange. According to my psychiatrist, I have an incredible ability to know exactly how many times she’s told me the same story in the past, but I don’t remember the contexts I heard it in.

I feel like my psychiatrist would relate to this

One study (King et al., 2013) found that when they asked bipolar disorder patients to recall memories from their life, they were more likely to recall those memories from a third-person or observer perspective. It makes me wonder why that is. It’s like the people with bipolar disorder can’t remember being in their own head, even if they can “see” what happened in their memory. Something is disconnected between their past and present minds. They specifically can’t remember being themselves.

Bipolar disorder can be so much more than having emotional “ups” and “downs”. For some people bipolar disorder affects us every day and changes how we live life. Many people don’t realize how memory problems can affect us. When I write, I write about the present at least as much as I write about the past, because I know how transient the present really is.

Have you ever experienced something like this?


Bearden, C. E., Glahn, D. C., Monkul, E. S., Barrett, J., Najt, P., Villarreal, V., & Soares, J. C. (2006). Patterns of memory impairment in bipolar disorder and unipolar major depression. Psychiatry Research, 142(2–3), 139–150. https://doi.org/10.1016/j.psychres.2005.08.010

King, M. J., Macdougall, A. G., Ferris, S., Herdman, K. A., Bielak, T., Smith, J. R. V, … Mckinnon, M. C. (2013). Impaired episodic memory for events encoded during mania in patients with bipolar disorder. Psychiatry Research, 205(3), 213–219. https://doi.org/10.1016/j.psychres.2012.08.005

Shimizu, M., Kubota, Y., Mason, R., Baba, H., Calabrese, J. R., & Toichi, M. (2009). Selective Deficit of Autobiographical Incident Memory in Subjects with Bipolar Disorder. Psychopathology, 42, 318–324. https://doi.org/10.1159/000232974

Sweeney, J. A., Kmiec, J. A., & Kupfer, D. J. (2000). Neuropsychologic impairments in bipolar and unipolar mood disorders on the CANTAB neurocognitive battery. Biological Psychiatry, 48(7), 674–684. https://doi.org/10.1016/S0006-3223(00)00910-0


My medication history

I have a long and arduous history with medications. Sometimes, it takes quite some time to strike the right balance with meds and bipolar disorder. This is my own personal review of each medication I’ve been on. There’s a lot! My reviews won’t necessarily be applicable to other people because each person’s response to a medication is different, but hopefully this provides some sense of just how many trials it can take to find something that works.

Stimulants

Adderall — amphetamine salts, a classic stimulant drug. Adderall XR is an extended-release preparation. For some reason the XR didn’t work well for me. I still take the IR daily.

Ritalin — methylphenidate, a different stimulant drug. It has important differences from Adderall and may work better in some people. Slightly different forms of Ritalin go by other names, such as Focalin.

Vyvanse — basically a different kind of Adderall XR,; it is the same molecule as Adderall with an extra group attached that renders it inert, which is then cleaved in the liver over time to release Adderall. To me it feels less effective than Adderall, doses held equivalent.

Mood Stabilizers / Anticonvulsants

Lithium — I’ve taken doses ranging from low to high (currently I take a high dose). Lithium dose is measured by the concentration of it in your blood; the highest dose varies depending on individual differences. You do get frequent blood tests while the ideal dose is being determined, and less after that. It is incredibly effective for many people. Because I’m on a high dose, it sometimes makes me nauseous or makes me throw up, and my hands tremor quite a bit. The cognitive side effects are the worst, but they get better over time. 

Lamictal — lamotrigine. For some people with bipolar disorder, lamotrigine is a better drug than lithium. It is not strongly anti-manic (unlike lithium), but for some this may not be a problem; however, it may be superior at treating bipolar depression. Rarely, it can cause a horrifying skin reaction when you first start taking it (and for that reason, titration takes forever — for me, I believe it took 5 weeks to reach 200mg). Past that initial window, it is considered to have very few side effects.

Depakote — valproic acid. It’s more anti-manic than lamotrigine. It smells terrible, yet apparently it comes in a form designed to put in a patient’s food which psychiatrists call “Depakote sprinkles”.

Gabapentin — I took it for anxiety, and it did put me in a good mood, so I suppose it worked.

Antipsychotics

Seroquel — quetiapine. People pronounce it in wildly different ways, I say “kweh-tie-ah-peen”. It helped with my mixed episode, but eventually it lost effectiveness and I found myself staying awake all night on 800mg (that’s a lot of Seroquel). Basically, it’s good for putting you the fuck to sleep, or at least it should be.

Zyprexa — olanzapine. It made me gain a lot of weight. It was fairly effective, but I had to discontinue it due to problems with my liver and its effect on my metabolism. It’s also pretty good at putting you to sleep. I preferred the sublingual form during my inpatient stays (it’s vaguely citrus flavored) because it made me feel better really quickly when I was agitated.

Abilify — aripiprazole. This drug actually helped me for a long time, and it still seems to have some effectiveness but I developed a facial dyskinesia while taking it. That’s an involuntary muscle movement, in my case of my lower left face. This was thought to be uncommon at first, but it turns out with long-term Abilify use (4 years for me), it’s quite possible. I can’t take any drugs related to Abilify anymore — these include Vraylar (cariprazine) and Rexulti (brexpiprazole). Abilify is not usually good at putting you to sleep, but when I started taking it I was on a dose that was too high for me at the time and I was very somnolent most of the time. 

Geodon — ziprasidone. I felt well but it made me throw up a lot. I discontinued it and got some Zofran from the ER. You have to take it multiple times per day, so you hope it doesn’t put you to sleep. I usually did have to take a mid-day nap.

Latuda — lurasidone. You have to be sure to take it with food. It wasn’t very effective for me. 

Saphris — asenapine. Warning, it only comes in a sublingual form and it’s cherry flavored. Nope. I only took it once and I had nightmares about cherry flavor afterwards.

Clozapine — I didn’t actually take this one, but it was on the table. I chose Haldol instead. It is probably considered the most powerful antipsychotic because it has been shown to break through where other antipsychotics have failed, and it was the first “second-generation” or “atypical” antipsychotic. However, it is quite possibly the single most dangerous drug in psychiatry — the potential side effects include a catastrophic loss of white blood cells, among other serious effects. It’s a “drug of last resort”.

Haldol — haloperidol. Haldol is an older drug, one of the “first generation” or “typical” antipsychotics and it is the most potent among those, also with the highest likelihood to cause dyskinesias (including tardive dyskinesia, which is permanent). These side effects have led to the popularity of the “atypical” drugs listed above, which are less likely to cause dyskinesia. Haldol is very effective for me, and I don’t find it sedating at all (which is a blessing and a curse). Having taken most of the atypicals available in the US (except for clozapine, paliperidone, risperidone, and a couple others that are much more rare), I was surprised at how not sedating it is.

Thorazine — I haven’t taken this one either, but it’s been on the table because of its more favorable side effect profile. It is the original antipsychotic drug, from which tricyclic antidepressants were also derived. It has more action on the histamine receptors than Haldol, making it much more sedating. However, this also makes it less prone to cause troubling dyskinesias — for example, antihistamines are actually a treatment for dyskinesia.

Antidepressants

Prozac — fluoxetine. It’s pretty much the basic SSRI. It didn’t do much for my mood at the time. It’s often used in combination with olanzapine/Zyprexa.

Lexapro — escitalopram. It’s an SSRI, and it has high selectivity to affect serotonin reuptake and not norepinephrine reuptake, in contrast to Prozac (which is not very selective). I took it for anxiety and OCD symptoms; I wasn’t convinced it was effective. It also changed my sexual functioning for the worse. 

Wellbutrin — bupropion. It’s an atypical antidepressant that affects norepinephrine and dopamine uptake. I took it to help with smoking cessation. It did make cigarettes taste bad, but I continued smoking them and within short order the drug made me manic.

Trazodone — an atypical antidepressant and an oldie but goodie. This one puts me to sleep (most of the time), and thank God for that.

Remeron — mirtazapine. Another atypical antidepressant. Usually a sleep drug, sometimes used for straight depression, also a great anti-emetic (anti-nausea drug).

Benzodiazepines

Xanax — the only time I took Xanax was recreationally, but I didn’t feel very enamored with the experience. Xanax is highly addictive, I suppose some people find it euphoric in a way. 

Ativan — it’s like toned-down Xanax, it is quite effective but it’s not as euphoric. It has helped me in ways other drugs couldn’t, although whether I would recommend them would be situational due to the addictive potential.

Valium — I’ve only gotten it in the ER, but it lasts longer than Ativan.

Others

Propranolol — a beta blocker, it helps me with akathisia (a side effect of antipsychotics).

Cogentin — benztropine. An antichonlinergic drug used to treat the side effects of antipsychotics. I didn’t take it for very long.


Best books for people diagnosed with bipolar disorder

When I was first diagnosed with bipolar disorder, my therapist gave me a book that changed my life. Books can influence how you understand your own bipolar disorder, and yourself in relation to it. I haven’t read every single book out there, but here are a few that I have read.

Welcome to the Jungle by Hilary Smith

Technically, this is a self-help book. It contains a lot of good information, tips, and recommendations. The thing I like about this book in particular is its humorous and lighthearted style. I read the original edition of this book, and I no longer have it because I gave it to someone else, but I still remember some of the bipolar jokes! I recommend this book to anyone who has just been diagnosed with bipolar disorder but doesn’t know much about it, and needs a source of information.

Manic by Terri Cheney

Manic is a memoir. Memoir can be so helpful, in my opinion, because it allows us to have insight into the lives of people who have faced similar struggles as us. This book describes itself as “visceral” — focused on the experience of mania and depression from a very subjective viewpoint. Cheney herself said the focus is “on what bipolar disorder felt like inside my own body”. Paradoxically, it becomes very relatable by just how idiosyncratic it is. I recommend this book to anyone who feels alone in their struggles with bipolar disorder.

An Unquiet Mind by Kay Redfield Jamison

This is the book that changed my life. As a freshman in college, it single-handedly inspired me to pursue a career in research, and specifically bipolar disorder — which is now my career. Jamison is an authority on bipolar disorder, but this book is not a textbook — it’s a memoir. In a display of great vulnerability (at the time, nobody could know if this book would end her career) Jamison tells the story of her life, from childhood to a breakdown shortly after completing graduate school, mania, psychosis, depression, and a serious suicide attempt. Throughout it all, Jamison interjects wisdom and knowledge. This book simultaneously provides both deep information about bipolar disorder and a revealing look into the life of somebody who lives with it. I would recommend it to anyone who with a curious mindset, who wants to know more about the science of bipolar disorder and the culture of academic psychiatry, as well as the personal experience of living with bipolar disorder from the perspective of an expert.

Have you read any good books about bipolar disorder? Feel free to leave a comment!


Should I be afraid to take lithium?

Lithium has a reputation. When I was first prescribed it, I felt a sense of fear and also — somehow — a sense of achievement, like I had won the lottery for crazy. When you hear about lithium, it’s often to stress that it is only for those top shelf mental illnesses; and it is good for that, however, it’s not necessarily true that you’re on the top shelf just because you’re starting lithium. A lot of people take lithium. On some occasions it might be the first medication tried. There are a few things to know about lithium in order to make truly informed choices about what you’re getting into.

It’s highly effective

Lithium is one of the most effective medications for bipolar disorder. Which medication is the best varies by person, and a lot of people have success with anticonvulsants like Lamictal. But for many people, the most effective medication is lithium, and its effectiveness has been well-documented for many years (it was first used in psychiatry in 1949). According to one study, about 30% of people who try lithium witness a complete recovery, while 60% see some improvement.

Unlike some other medications, lithium isn’t just a treatment for symptoms of mania; it actually prevents future mood episodes. Relapses become less frequent and shorter. There is some evidence that lithium has a protective effect in the brain.

Lithium has a decent chance of working for any type of bipolar disorder, but there are some people in particular who are very likely to be lithium responders. Those people tend to have:

  • Fewer hospitalizations prior to starting lithium
  • Later age of onset
  • An episodic course (moods cycle and then resolve for a while, as opposed to chronic cycling)
    • About 44% of people with an episodic course have complete remission on lithium, compared to 15% of people with a non-episodic (chronic) course.
    • In one study, 90% of lithium responders who experienced full recovery had complete remission of mood symptoms in between episodes before starting lithium.
  • Mania occurs before depression (mood cycling starts with mania)
  • Strong family history of bipolar disorder and/or a family history of lithium responsiveness
    • One study found that 35% of patients without a family history of lithium response had a complete recovery (similar to other studies mentioned), but among those with a family history of lithium response, that number jumped up to 67% full recovery.

Yes, you’ll get blood drawn

The dosage of lithium is based on how much lithium is in your blood, not how many milligrams are in the pill. The therapeutic window (the space in between the effective dose and the toxic dose) for lithium is much more narrow than most other drugs, so you’ll have to get blood tests frequently, especially when you’re still trying to figure out what dose is best for you.

If you’re afraid of needles, you will probably overcome that fear.

Because lithium blood levels are the most important factor in dosage, it’s probably pointless to try comparing doses with any bipolar friends. Their minimum and maximum dose is probably different than your minimum and maximum dose, so you’re working with two different scales. The middle of their dose range isn’t the middle of your dose range.

Side effects

No doubt, lithium has side effects. The good news is that if you find a low dose is effective for you, you might experience few or no side effects. If you’re on a high dose, it’s more likely that you’ll experience some side effects. These could include:

  • Hand tremors. This can make your handwriting different, and makes it very hard to put Jello in the fridge.
  • Nausea and vomiting. This tends to happen at quite high doses, and it may be a sign that your dose is too high; however, switching to the extended release version of lithium may help.
    • It’s worth noting that your dose can get too high for a variety of reasons, including dehydration; taking ibuprofren or other NSAIDs (you should probably switch to using acetominophen); or climbing a mountain and reaching a very high altitude. That last one hasn’t happened to me personally.
    • If you do actually vomit, it might be very aggressive vomiting and it always seems to come on suddenly.
  • Brain fog. Attention and memory problems come naturally to bipolar disorder, but lithium makes them worse. You may feel that your brain is just working really slowly, and it’s hard to concentrate or read. (Some people also have visual distortions on lithium that make reading even more difficult. I find it easier to read large print.)

In conclusion

Many people are afraid to take lithium, but some experts argue that it’s actually under-used today due to the public perception of it. So, in my opinion, it’s certainly worth trying. Most people won’t experience too many problems; if you’re on a high dose, you might experience some weird stuff, but to me it’s worth it for reducing my mood symptoms, and all of the weird stuff is manageable if you make some small adjustments to your life.

References

Tighe, S. K., Mahon, P. B., & Potash, J. B. (2011). Predictors of lithium response in bipolar disorder. Therapeutic advances in chronic disease2(3), 209–226. https://doi.org/10.1177/2040622311399173