This article is about Bipolar Affective Disorder, but my own story is chaotic due to comorbidity. I have Bipolar (Type 1), Complex-PTSD (C-PTSD), Generalized Anxiety Disorder, Agoraphobia, Temporal Lobe Epilepsy, and Tardive Dyskinesia. Comorbidity is a difficult task for my supporters and me; however, for this article, I will attempt to concentrate mainly on Bipolar.

This article is my chance to tell my story as it dovetails into some of the psychiatric and neuroscientific research surrounding the disability, for which references are provided after the conclusion. I’m attempting to provide academic and personal knowledge in a compassionate and understanding way (so I’ll keep the tone as informal as possible, although a few technical explanations are necessary). In doing so, I hope to provide some valuable new information and ideas. I would also like to demonstrate that I walk the same path as you. You are not alone.

To those of you who know me, this article might be confronting. I cannot cover every manic or psychotic incident (i.e., “the juicy bits”) because there’s too much juice! So, you will only get some highlights. I should also say upfront that there is nothing that I am ashamed of that has been caused by my mental illness. There are things that I’ve done that I’ve never revealed, but if my stories make it easier for the next fellow Bipolar patient, then I’ve made the right choice in being entirely frank and open.

It is essential to address how our loved ones and colleagues deal with our illness: their reactions, perceptions, behaviours, and care. I will revisit some experiences from the spectrum of my varying relationships and share some tips. These are critical issues that are hardly ever adequately addressed. For our loved ones, it is very accurate that:

During a manic episode, you may have to cope with reckless antics, outrageous demands, explosive outbursts, and irresponsible decisions. Moreover, once the whirlwind of mania has passed, it often falls on you to deal with the consequences. During episodes of depression, you may have to pick up the slack for a loved one who doesn’t have the energy to meet responsibilities at home or work (Miklowitz D.J., Johnson S.L., 2006).

However, society needs to learn how to help mentally ill people, as much as it would be willing to instal a wheelchair ramp. No one is blameworthy when it comes to any form of disability. Compassion, empathy, patience, tolerance, and understanding are essential to successfully approaching these issues. Bipolar is sometimes wild, and I’m not suggesting it can be easy to deal with, but I am suggesting more effort needs to be made by those who ought to have a better attitude.

I will conclude the article by looking at optimum treatment standards (without going into pharmaceuticals too much). I also love the idea of help from the “lived experience” perspective, and we have to get the provision of “peer workers” to mental health patients the correct way because the power of that help must pivot from the existence of ultimate empathy via a “natural relationship.” If that is to be strained through bureaucracy, higher education, and administration, then the purpose of having “peer workers” is negated — because you are left with a stooge.

What is Bipolar Disorder?

Mood fluctuations in life are widespread, especially when facing stress — however, where there is an element of tension and impairment because of such moods, there may be an underlying disorder, such as Bipolar Disorder (BD). BD is a chronic and complex mood disorder characterized by manic, hypomanic, and depressive episodes.

It is one of the top causes of worldwide disability and morbidity. BD has been frequently associated with severe medical and psychiatric comorbidity, early mortality, high levels of functional disability, and compromised quality of life.

Unfortunately, for me (and for many of you), BD1 has a relatively poor prognosis, particularly for males. 50% of patients experience a second episode within two years of the first episode. In the general population, the lifetime prevalence of BD1 is around 1%, whereas the overall lifetime prevalence of bipolar spectrum disorders is 2–3%, with a prevalence of 0.4% for BD2. Overall, the evidence suggests an equal distribution between genders and ethnicity.

If you have BD1, you are at an increased risk of death by suicide. The incidence of death by suicide is 20 times more than the general population — a striking statistic. About one in three to one in two patients with BD attempt suicide at least once in their lifetime, and approximately 15–20% of attempts are successful. BD1, in particular, has a progressive course and implications for your cognitive and functional domains.

What are the Symptoms of BD1?

What is Mania?

Mania is more than just having extra energy. It’s a mood disturbance that makes you physically and mentally energized for a week or more. Mania can be severe enough to require you to be hospitalized.

What is Hypomania?

Hypomania is a milder form of mania. It is not usually as extreme as mania and may only last for a few days. If you are experiencing hypomania, your energy level is higher than usual.

What is a Depressive Episode?

A depressive episode can be characterized by low mood and other depression symptoms that last for two weeks or more. Symptoms of a depressive episode can persist for several weeks or months at a time. Less commonly, depressive episodes last for over a year but can linger for more. When experiencing a depressive episode, you can try to change your thoughts and behaviours to help improve your mood.

Bipolar 1 Disorder

(BD1) has been frequently associated with severe medical and psychiatric comorbidity, early mortality, high levels of functional disability, and compromised quality of life. The necessary feature of BD1 involves the occurrence of at least one-lifetime manic episode, although depressive episodes are common. Psychosis can lead from either pole and is most likely found in those with BD1.

BD2 needs the occurrence of at least one hypomanic episode and one major depressive episode.

Some History of BD

Hippocrates was the first to distinguish between different dispositions or touches of humour in mood — melancholic, choleric, phlegmatic, sanguine — but it was Jules Farley in 1854 who first described an alternating cycle of euphoria and melancholia. In 1899, Emil Kraepelin further elaborated upon this burgeoning distinction as he distinguished the psychosis observed in manic-depressive disorders from those with schizophrenia.

What is the cause of BD1?

Psychosocial Factors and Pathophysiology:

A significant life stressor, such as mine mentioned above, can lead to neuronal changes such as neurotransmitter levels, synaptic signalling alterations, and neuronal loss, implicated in the first episode of the mood disorder, as well as the recurrence of subsequent attacks.

BD is considered one of the most heritable psychiatric disorders; however, a multifactorial model, in which genes and the environment, in parallel with psychosocial stressors, dynamically interact to precipitate this phenomenon, is presently thought to be responsible.

My Background:

My Dad was a very abusive alcoholic. My Mum sometimes abused alcohol (to self-soothe — which meant she was sometimes an absent mother). My family was both chaotic and depressing. I witnessed my siblings’ bloodied faces when I was an infant, and later I was also hit and bashed (until I was old enough to fight back with due force). I remember one particular incident having to protect myself with a chair because Dad kept violently charging at me. Dad ended up in the hospital with a fractured eye socket. Even though it was self-defence, I still feel guilty to this day. Before my time, my brother, sister and Mum had had to protect themselves too. The police knew us well.

Very relevant to this was that the Christian Brothers in Belfast, Northern Ireland, had sexually and physically abused my Dad when he was a boy, and my grandfather physically and verbally terrorized his whole family. Moreover, his family were at the centre of the Irish Republican Army (IRA) issues of the day, with one of Dad’s brothers being murdered and another actively involved in a terrorist attack. My immediate paternal family were chaotic and violent.

On the other end of the spectrum was my Mum’s peaceful family: regular church-going teetotallers. My Mum and her siblings formed secure attachments with my maternal grandparents, as well as a closeness with one another that was severely lacking in my Dad’s life. But something about my Mum’s family I’ve learned is that they were prudish. I don’t necessarily mean in a sexual way, but in a way that promoted the covering up of “perceived unmentionables” by simply pretending they never happened. In an abusive environment, that makes life for the victim even more horrendous.

The overall template I was granted was terribly unbalanced from an attachment, trauma and neglect perspective, and I was predestined to live on its terms. Without any choice, I was an extension of all of it.

I believe my Dad had the same disorder as me. He had all the hallmarks of deep depression at times (constantly teary) through to manic episodes, in which he was the centre of attention without trying — he drew people in with his charisma, generosity, energy, and excitement. I like to believe that’s who my real Dad was (he has since passed away). I loved my Dad, who was my “Number One Fan.” It’s hard to believe, I know.

I had also suffered horrendous sexual and violent abuse under the age of 22 by multiple perpetrators (but not sexually by my Dad, I must stress). As well as this, I also suffered some intense physical and verbal (psychological) bullying in high school (and university for a short time). However, much of this seems more closely related to my dissociative symptoms in C-PTSD from a mental health perspective. And indeed, I live in the constant fear of being harmed by others (hypervigilance), which leads to dissociation. That is subject to work in progress, but once BP1 takes hold, things become challenging.

I had an unusually heightened sense of religiosity as a child (another aspect handed down from my parents) — that I had a special connection to God and was often experiencing something of a supernatural nature. I hallucinated under the age of 10 and saw an angel in my lounge room, holding a leaf of a pot plant, and he then looked back at me. I ran to get my Mum, but he was gone by the time we got back. I tell you this because my hyper-religiosity continued into my adolescence — granted, I was immersed in the traditional Roman Catholic faith in every way — but again, my experience was strange. I would put notes in the Bible, believing God would take them; I would see the ghosts of family members I had never met, and I would feel the fleshly presence of Christ in my prayers.

Nevertheless, one day, when I was 15, everything came crashing down. I slipped into the most profound depression you could imagine — one I could not climb out of for over six months. I had to do my schoolwork from home, which I astoundingly got through unscathed. However, I would fixate on religious icons. I remember I used to light a candle in a dark room and stare right into the flame, believing I was seeing the Holy Spirit; This was intercepted by moments of agitation and psychosis. One night I directed my anger at the Virgin Mary, whose picture hung on my wall. I violently smashed it with a baseball bat — I was “possessed,” full of extreme energy and heightened arousal. My Mum entered my room but then ran and hid until the “possession” had exited.

These flutters of “possession” that could last between a minute and a week were the main topic in my psychiatric sessions. My psychiatrist, an expert in adolescence, wanted me to go to the children’s hospital. Still, my parents would not allow it — something that is regrettable — but he diagnosed me with Manic Depressive Psychosis (now known as Bipolar 1).

I was deeply insecure (mainly because of my bodily appearance and sexuality, for which I was bullied), causing terrible inward angst. Still, I had streaks of success where mania assisted me in achieving on a grand scale, particularly regarding my academic and musical escapades. However, the depression was the total opposite.

It seems clear that the above influences and experiences shaped my mental health destiny.

Biological Factors

Genetic Factors:

The risk of BD is 10–25% when one parent has a mood disorder. Twin studies have shown 70–90% concordance rates in monozygotic twins. Chromosomes 18q and 22q have the most robust evidence for linkage to BD. BD1 has the highest genetic link of all psychiatric disorders.

Neuroanatomy:

The prefrontal cortex, anterior cingulate cortex, hippocampus, and amygdala are essential areas for emotion regulation, conditioning of responses, and behaviour response to stimuli.

Structural and Functional Imaging:

Patients with severe depression or a family history of mood disorder show increased glucose metabolism in the limbic region with decreased metabolism of the anterior cerebral cortex.

Biogenic Amines:

Dysregulation of neurotransmitters implicated in BD includes dopamine, serotonin, and norepinephrine.

Second Messengers:

G proteins or guanine-binding nucleoproteins are targets for mood stabilizers. Second, messengers regulate neuronal membrane channels.

Hormone Regulation Imbalance:

Adrenocortical hyperactivity is observed in mania. Chronic stress decreases neurokinin brain-derived neurotrophic factor (BDNF), which impairs neurogenesis and neuroplasticity. The growth hormone is released after stimulation from dopamine and norepinephrine, and its release is inhibited by somatostatin. Increased CSF somatostatin levels are observed in mania.

Immunological Factors:

Chronic elevation of cytokines and interleukins is associated with clinical severity.

Presentation of Patient During Illness — A Few of My Stories

Depression:

When I am in a depressive state, I am generally pessimistic about everything in my life. I feel pangs of guilt and remorse that seem to eat from within me. I usually do not leave the house (although that may also be due to anxiety and agoraphobia). At my worst, I haven’t left the house in over a year, except to go to the hospital. Unfortunately, suicidal ideation originates during the depressive phases and manifests upon transitioning to baseline or a subsequent manic state, as you can become more threatening. When I am extremely depressed, I demonstrate avolition and abulia — an extreme lack of willpower.

Hypomania:

I have recently come out of a major depressive episode, for which I was treated with electroconvulsive therapy (ECT) in the hospital. Still, I flipped from that to being hypomanic, studying for several postgraduate degrees, writing professional articles, and being awarded a scholarship and an honorary doctorate! On top of this, with the support of friends, family, and dedicated mental health professionals, we have begun building the Newosis Mental Health Foundation (www.newosis.net) to carry out novel mental and neurological health research, education, and support, according to a framework of compassion, empathy, benevolence, and the “lived experience perspective.” Things have been going at 100 miles an hour!

Mania:

But when I have full mania (140 miles an hour), it is often hyperkinetic, unpredictable, and erratic. I feel so high that I think I am the centre of everyone else’s world and tend to “impose” myself on them. I feel invincible. Moreover, when one is manic, they are more likely to demonstrate pressured speech, which implies a rapid and continuous production of speech that is difficult to interrupt (reciprocally, address is slow and soft in depression).

When manic, at its worst, you can expect distractibility, irritability, lack of concentration, illogical condensations, delusions of grandiosity, and flight of ideas.

After a few weeks of activity, one of my worst manic attacks bankrupted me. I had deluded myself into being a mega-rich playboy — and had fully immersed myself in the persona. I was sexually promiscuous, took significant financial risks, bought designer clothes, went overseas, ate at the finest restaurants, bought things for everyone, and vaunted all of it. Don’t get me wrong — I was a lawyer and “quite well-off,” but this episode took me to a level I could not sustain. Drugs and alcohol also accompanied mania in the early years, and I lost my driver’s licence twice in 10 years. Ambulances. Paddy wagons. You name it.

I had to leave my job, inevitably. Almost as quickly as the episode had started, I couldn’t pay my rent or bills. I was evicted, and not long after, I became bankrupt and homeless. Yes, you read that right: “homeless.” I was a drunken “psycho” who had nowhere else to go except to the hospital or my grave. It was nearly my grave, but my family “collected” me and took me back to Adelaide. Eventually, just like everything in our lives, the ordeal finally passed. Mania or psychosis is never forever.

During other times of mania, there has been far less “bling,” and I have even followed a calling from God to go to the Vatican! Not only that, but I also thought my mission was to convert people to Christianity, so I handed out free plastic rosary beads in the Muslim quarter of Rome. On the same trip, I was in dangerous situations in the middle of the night, being attacked and robbed several times. Similar “missions” occurred in Thailand and the Middle East. It is a miracle that I am still alive!

Overall, I’ve been in and out of the hospital for over ten years. Much of that was for suicidal ideation or attempted suicide. I have had near-death pharmaceutical overdoses, cut myself, and a few plans foiled thanks to the vigilance of those who love me (including being stopped from stepping in front of a hurtling freight train). I spend at least once a year in the mental health ward. I’ve spent well over a year in mental health wards over the last 12 years.

That is a part of my life that I must accept and manage, and I have reached a point where that is working for me. I have been blessed to be able to teach law at university, mentor and counsel disadvantaged and abused kids (utilizing my own “lived experience” and academic learning) and, undertake multiple postgraduate degrees at high levels of achievement, become “practically” involved with numerous charities, become a mental health researcher, and even direct a community music ensemble.

My life is interspersed with hypomania and mania, and if I can harness it properly, sometimes it can be very fruitful. So, BD has a lot to do with my success too. I wonder whether some of you (who have BD1) could relate to that? I have periods of extreme intellectual clarity, far exceeding my days of excelling as an undergraduate. It doesn’t make sense to me, but I am grateful for the blessing.

Psychosis:

There are also times that I have suffered from psychosis, hallucinating and feeling “possessed” (mirroring the religiosity aspect of my childhood), and I hear voices. I used to see a ghostly nun appear close to me, sometimes in the room with me, sometimes in the window. It was terrifying.

This psychosis (and possible seizure activity) had initially been ascribed to Temporal Lobe Epilepsy because hyper-religiosity is not uncommon in people who have hippocampal damage. Still, the neurologists and psychiatrists are in some disagreement about that with me. I just want it to be fixed. BD1 with psychotic features is essentially the presence of delusions, phobias, paranoid thoughts, auditory, visual, or other hallucinations.

Rapid Cycling and Mixed States:

Some different terminology goes with the “BD Show,” including “rapid cycling,” where there have been at least four distinct mood episodes within the same twelve-month period. You can have “mixed states,” where you feel more than one mood at the same time — this has been a problem for me and is extremely scary — it usually takes me a while to figure out whether it is “mixed states” from a BD perspective, or whether it is an acute attack of dissociation because of my C-PTSD.

I should probably say that I am experiencing “mixed states” right now. I was in a deep depression for a few hours, and then suddenly, I was on top of the world with racing thoughts — sometimes you can feel so depressed that you want to die, but at the same time, you are agitated, irritable, and have racing thoughts. Mixed states are the worst as you feel like you are being pulled (with great force) in two different directions, and the point of elasticity between those two forces is so painful — that’s the only way I can describe it.

Treatment

Various factors can affect pharmacological and psychological approaches; these comprise medical and psychiatric comorbidities, past or current treatments, treatment response or adverse effects in patients and relatives, and the patient’s inclination to be treated.

The patient’s safety (and nearby people) is vital during acute treatment, and stabilization is paramount. Additionally, engagement in treatment and developing a therapeutic alliance is essential in any chronic disorder that requires long-term adherence, and this collaboration is especially true during the first episode.

I have been lucky to have formed great alliances with healthcare professionals in the last five years. My psychiatrist has been more involved with my care than my previous ones and has been able to supervise and care for me each time in the hospital and ensure I have a team of professionals that are needed for my particular manifestations of psychiatric disability.

Pharmacology:

Mood stabilizers and antipsychotics are the foundation of acute management of BD mania and depression. Mood stabilizers are the primary pharmacological agents for treating BD, particularly in the maintenance phase of mania. Lithium is the most used drug for treating BD, particularly for its effectiveness in reducing suicide risk. 50 to 70% of patients treated with lithium show a decrease in mania.

I take a combination of Lithium and Sodium Valproate, for which I need to have regular blood tests. I was also on antipsychotics for fifteen years, but I developed Tardive Dyskinesia (TD), a neurological movement disorder — great, hey? — so my psychiatrist weened me off them for an extended period. The TD has remained (and is likely permanent), but it is much better than it was. I could hardly hold a knife and fork and couldn’t write with a pen or pencil. I still have difficulty, but it has improved. If needs be, I will have to go back on to antipsychotics, but luckily, I have a trump card for when the “wheels fall off.”

Electroconvulsive Therapy (ECT):

ECT is highly effective for treatment-resistant acute mood episodes like refractory depression or acute life-threatening mania, predominantly in patients with psychotic or catatonic features. ECT is the BEST treatment for me when the “wheels fall off.” I had found it terrifying but have never finished a course feeling worse than when I began. The team that carries out the ECT are very caring and attentive. You are given a sedative, then a general anaesthetic. It does not feel like an “electric shock treatment” at all. The effects of sedation can be enjoyable (but I probably should not say that).

Psychotherapies and Psychoeducation:

Psychotherapies and psychoeducation have also been constructive. I have seen counsellors, psychologists, psychotherapists — and life coaches. All have been very helpful. Nevertheless, it is excellent to seek proper therapeutic approaches such as cognitive behavioural therapy or compassion focussed therapy. With this extra help, my psychiatrist has acted as a team leader and coordinated my psychiatric care while keeping in touch with my pharmacist and other professionals concerning my BD1.

Improvements to be Made

Attitude-Shift:

For those caring for loved ones with BD, try not to take the shift away from who the actual patient is, but at the same time, make sure you have a self-care regime in place too. Looking back on my experiences, try not to take BD symptoms personally. When amid a BD episode, we may be reckless, cruel, critical, and aggressive. When depressed, we may be rejecting, irritable, hostile, and moody. It’s important to remember that these are usually the result of neuroscientific, biological, and environmental factors beyond our control.

When your loved one is well, negotiate a “treatment contract” and, more importantly, a “crisis plan.” This can include removing credit cards and car keys to going straight to the hospital, mainly if your loved one is suicidal or violent. It may be appropriate to call the police as well as the ambulance. But I reiterate, talk through all of these things together in wellness so that it is a “known factor” in the course of a flare-up.

Always seek help and update your learning (the science is changing)! Seek information and set boundaries for yourself. But if you do not adequately educate yourself about the condition, your support will have no concrete foundation and simply be reactionary. I have experienced this in a relationship where my ex-partner “didn’t want to hear about it” and didn’t research what they were dealing with. Despite being in and out of the hospital, it was my “personal” fault that the relationship ended. For BD patients, the fact that people who love us decide to give up on us can be the most painful part of our illness.

Some outstanding books and support groups exist for those living with BD (as supporters and patients). Everybody is different, but I suggest you be as diverse in your research as possible. My first mental health book was Anne Deveson’s Tell Me I’m Here, about her experiences with her schizophrenic son. It helped me to face the gravity of my mental illness in my mid-teens. Kay Redfield Jamison has written several excellent books (including An Unquiet Mind) concerning her BD that have helped me. Craig Hamilton’s Broken Open is another excellent addition to BD literature. I also follow many blogs and podcasts and trawl Youtube, as well as consult psychology and psychiatric textbooks! Knowledge is power!

Compassion:

It should go without saying that care should pivot from the concept of “compassion.” Gilbert (2010) defines compassion as a deep awareness of the suffering of another coupled with the wish to relieve it and sees it as having six attributes: sensitivity, sympathy, empathy, motivation/caring, distress tolerance and non-judgement. Just like any oppressed or marginalized group in society, the mentally ill require a “gentle touch” with a basis of rigorous scientific understanding rather than being blamed, shamed, or ignored. Failing to do so is more of an indication of society’s sorry nature than the symptomatology itself.

Patient Autonomy:

Patient autonomy is essential to a person’s sense of worth and self-esteem, and professionals might do well to be mindful in ensuring that it is the patient who is at the centre of treatment and that such treatment should pivot from that patient’s feelings, pain, concerns, and socio-cultural reality.

Multi-Dimensional Approach:

As alluded to above, a multi-dimensional approach to treatment is optimum, including the psychiatric team working with other relevant mental health workers (such as counsellors, psychologists, social workers, psychotherapists, pharmacists, and peer workers). This assists in predicting likely instances of mania, depression, or psychosis — because they get to know the individual and can talk with each other and compare notes on their concern and care for their patient. I am fortunate that this has been the case for me for around five years with my current mental health team. In Australia, severely mentally ill people also have access to the National Disability Insurance Scheme, which supports people on their mental health journey aspiring to gain more independence.

Peer Workers:

Peer workers are brilliant for recovery in the mental illness sphere. Having someone from the “lived experience” perspective in your network is an invaluable source of compassion, empathy, real-life relatability, and the provision of information that leads from that. Peer work needs to be expanded, and the worst thing that could happen would be to try and “mobilize” these people such that they have to “tick every box under the sun” to be able to give a very precious gift.

To be a peer worker, you must have lived through the disability; therefore, in regulating them, do not impose restrictive elements whereby they will be triggered and dissuaded from participating in mental wellness. I want people who are just like me to whom I can directly relate. I don’t want people like me “pretending to be social workers.” What is the reason we want to have peer workers? Because they have “lived experience.” Therefore, let such roles pivot from that “lived experience” and not some bureaucratic and administrative regime.

Concluding Remarks

It is not easy, but I know we can succeed despite BD. What we go through makes us some of the strongest people on earth.

Read my Narrative Curriculum Vitae (Plummer, S., 2022) not to show off but to show you what can be achieved despite being thrust into the “too weird” / “too full-on” / “too-hard” — basket.

The trick is to keep on learning as much as you can. Plan and make contingency lists. Notice when things begin to change. Tell your loved ones how they can help when times are getting out of hand for you.

Surround yourself with the best people and get rid of the worst! Life’s too short!

Never feel ashamed of your illness or disability. Be proud that you got up today and decided to keep on going!

Do it tomorrow and the next day too… I know you can do it!

And, while you’re at it, follow your dreams!

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