Latuda

First night on Latuda a success … I think

First nights are a critical test for me when it comes to new medication. After taking Latuda for the first time last night, I woke up with an even, solid mood, not too groggy, and most importantly, I had NO NIGHTMARES. Nightmares are an adverse effect some of my doctors have been unaware of but the product monograph for drugs like Seroquel warns of “abnormal dreams”. I woke up screaming the first night I took Mellaril; not really desirable in a drug that’s supposed to improve your mental health. It has been a serious problem with some of these drugs for me in the past.

The thing is, I’m not taking Latuda for my mood — at least, that’s not my objective in taking it. I want to improve my attention, focus and concentration. While I have my own in-born challenges when it comes to focus and attention, I suspect that my other meds are making things worse, particularly when it comes to concentration. It’s ironic because I’m so crippled when it comes to maintaining focus and attention that I’m hugely behind on filing my taxes. (And trust me, this goes way beyond normal procrastination!) Unfortunately, getting my taxes filed is the only way I will qualify for the catastrophic drug coverage that will help pay my $1,500 a month drug bill.

That’s what it will cost if I follow all the recommendations of my psychiatrist. At this point I don’t know how far along that road I will (or can afford to) go. Both my pharmacist and I did some research and I decided to start Latuda at half the dose my doctors wanted me to start on. And that dose is 1/6th of what they think they want me to end up taking. I’m doubtful of that target, but have been so frustrated by my cognitive challenges that I’m cautiously willing to try new things. I don’t usually take medication that has been on the market for less than a decade out of fear of unknown effects, but I’ve lost so much ground because of my attention, focus and concentration challenges that I feel that I need to re-evaluate all my approaches. Latuda is distinguished from many other psychotropic drugs by an apparent lack of interference with cognition.

It’s only day one … but I’m hopeful.

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Finding hope …

Yesterday morning as I looked out my bedroom window at bright sunny skies I was struck by just how much I didn’t want to get out of bed. This feeling is familiar to all of us who’ve been fortunate to have a comfortable, peaceful sleep. But at the time I saw it as comment on the overall state of my life.

As I lay there, reminding myself of all the times (in fact, as recently as last week) when I did not feel this way, I fortunately began to interrogate myself. What is this shadow that is consuming all my hope? As longer days, warmer temperatures, and bright skies should invite thoughts of Spring, why is it that all I want to do is shutter myself away in darkness?

And then, in exploring, I found an answer.

Unfortunately it’s neither an easy or predictable process, but time and time again there comes a point at which the source of that shadow is revealed. And it is at those times that I am reminded that my own experience has always been that a bleak mood may be unusually extreme and crippling, however the feelings are never irrational. And while understanding their source does not provide immediate release, often that understanding, and identification of a path through those circumstances, can provide the one thing that is otherwise so thoroughly lacking: hope.

Modern medications can be helpful. But whenever I have these moments I am struck by how out of touch the practice of modern medicine can be. I remember seeing an older psychiatrist, who, while certainly not shy about writing prescriptions, took the time to listen to what was going on in my life and responded with a completely rational assessment of my circumstances at the time, and suggested a practical way forward that had nothing to do with either medication or therapy. When he connected the dots between my circumstances and my feelings I suddenly felt, for the first time, feelings of hope and relief.

Thankfully those feelings have carried me forward since I rediscovered them yesterday. So has gratitude that those particular circumstances are not so outside of my own control that I cannot act to change them. Unfortunately for so many diagnosed with a mental illness, the root of the problem lies outside themselves, in circumstances, like poverty, homelessness, and other forms of ongoing trauma, that are much, much more difficult to escape.

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Strange solitude – choosing to take new medication

A week ago I was sitting in the office of a world-renowned psycho-pharmacologist. We were trying to find options to improve my focus, attention, and concentration with medication. Although I believe the ultimate solution to these challenges lies in changing my work (so as to be around people more) and job responsibilities (to be more engaged with people and social justice), I have an urgent need to cope with serious challenges that I am facing right now.

At some point I will write more about the experience of seeing this undoubtedly outstanding doctor, and what that experience says about the system he and I are both a part of. However right now I need to write about the fear and isolation I feel at the possibility of taking this new medication. It’s a bit sobering to observe myself feeling these feelings, and then to remember what it feels like to face taking psychotropic medication as treatment for the very first time. That is a daunting place to be, and many of us must face it at a point in our lives when we are at our lowest in terms of resilience and resources.

Thankfully I have a fair deal to fall back on in terms of both. But neither of my regular doctors has ever prescribed the drug that the specialist has recommended that I try. It’s that new. Even my pharmacist has only one client who is taking it, at a dose considerably lower than what the specialist is suggesting. When I asked a friend, who is well-connected to others living with a major psychiatric diagnosis, he was only able to think of one person he knows who is also taking the drug. My amazing pharmacist has found me several key studies on the medication, but it will be my first time feeling quite so isolated in my personal experience of taking a particular drug. I usually know others who are taking the same medications I am.

Some of the adverse effects of this drug, while rare, are serious and potentially irreversible. The drug is from a class of medications that I have not taken regularly in more than twenty years. It’s not a class of drugs I have fond memories of. Ironically I was the person who brought the medication to the specialist’s attention as one option I was curious about based on my own research. I wasn’t quite prepared for his unreserved and wholehearted recommendation.

I generally shy away from medication that has not been on the market for at least ten years because it’s impossible to know what the long-term effects of drugs are until they’ve been in use for decades. However I feel like I am facing an unusual and major challenge right now, and I need to be open to new tools. I was nevertheless disappointed when I expressed my concern that we know so little about the long term effects of the medication and the specialist said “oh but we do know”. This flies in the face of both common sense and systemic evidence that is well known and well documented.

His comment did not leave me feeling particularly confident in him, despite his accolades when it comes to drug knowledge. The doctors who ultimately command my respect are those who can acknowledge what is not known about the drugs that they are prescribing. We make choices about unknown risks every day; I think it’s best to be upfront about the fact that we are doing so. I have some suspicions as to why the doctor took the position that he did. Many people would prefer to hear the reassurance he tried to give. Very few psychiatrists have the necessary experience, training, or time to have nuanced conversations about the pros and cons of taking medication.

When one of my regular doctors handed over the prescription for the med that the specialist recommended he actually spoke about his discomfort in doing so. It was his first time writing that prescription and he, like me, prefers to know more about the long-term real-world performance of medication before using it.

As counter-intuitive as it may seem, I appreciated that my doctor acknowledged his discomfort. By doing so he helped me to feel that I was not alone in the fear and reservations I felt about this new treatment. I realised that he was stepping out of his comfort zone while asking me to step out of mine. Oddly that did not scare me, it left me feeling comforted. I know he can empathize. We are facing the possibility (I have still not decided what we will do) of this new choice together. While I realise his approach might not work for some (and I am sure he would not necessarily have admitted his discomfort to others in my situation), his approach definitely works for me. Ultimately writing this has reminded me that he has been my support and partner in maintaining my mental health for almost ten years. For that I am deeply thankful.

Van Gogh - Self Portrait With Bandaged Ear

Psychiatry – from treating disease to enabling wellness

Recently I participated in a discussion about the Hearing Voices Movement with another consumer/survivor and two psychiatry residents. The discussion was part of a program to help psychiatrists understand the experience of recovery in mental health. Neither of the doctors had seen Eleanor Longden’s TED talks (here are the shorter  and longer versions) so I, along with the second consumer/survivor, described to the doctors key concepts that Longden raises in the videos.

Longden started to hear voices at the beginning of her second term at University (exactly the same point at which my psychological unraveling began). Central to Longden’s story is the observation, in hindsight, that the more engaged she became with the psychiatric system, in an effort to cope with her voices, the more problematic and malicious the voices became.

Longden ultimately recovered remarkably; not from hearing voices but rather from her terrible experiences of psychiatric care. The voices continue to be a part of her life, but their impact is no longer negative. An idea that Longden stresses is that voice-hearing is not intrinsically pathological, and should be seen instead as a complex psychological phenomenon, often (but not always) in response to stress. She takes the position that hearing voices can be a manifestation of past trauma or current emotional upset that is not otherwise being expressed, and recommends approaches to the experience of hearing voices informed by this perspective.

When we shared these points with the doctors, both found them interesting. One suggested that there were two types of voice-hearing experiences (Oliver Sacks suggests that there are many). Her observations were that the type of voice hearing that Longden describes is dissociative, and much less responsive to the neuroleptic medications used to treat schizophrenia. However the psychiatry resident also suggested that there was another type of voice-hearing that was much more clearly a pathological symptom of a physiologically diseased brain, and these individuals usually saw their symptoms diminish considerably when on medication.

Despite having had some awful experiences taking these drugs, I believe that they, and other medication, can be an important and powerful tool in coping with the overwhelming challenges that arise when our minds are not responding in constructive ways to the circumstances around us. Neither I, nor my consumer/survivor partner in the discussion, were promoting an anti-medication agenda. Instead what we were trying to communicate was the idea that the psychiatric establishment plays a powerful normative role in shaping the experience of hearing voices (and indeed of all forms of “mental illness”), and that, regardless of the varied origins of voice-hearing, seeing the experiences as intrinsically pathological is a self-limiting approach to recovery.

This is one of the fundamental challenges in mental health. Our mind is the seat of our consciousness, our sense of self, and our sense of our place in the world. A diagnosis of mental illness can thus be an indictment of the self. A diagnosis can sometimes help to situate frightening and dangerous experiences in a framework that helps us to feel that we are not alone in our experience. However medicine also sees a diagnosis as a disease. This can quickly become corrosive to a healthy sense of self. Longden’s case is a clear example of just how harmful this can be.

In the days following the half-hour discussion I was struck by the fact that the doctor’s observation was, no doubt unintentionally, a manifestation of psychiatry’s resistance to shifting the paradigm in mental health from treating disease to enabling wellness. Although I am aware of other doctors who apparently, based on this article, disagree with the resident’s observations, I don’t have the experience necessary to assert that the resident is wrong. I do know of research that challenges her observations. I could not help but think that even if the resident’s observations are correct, Longden’s alternative perspective is fundamentally important in how we go about improving mental health as it is understood in medicine.

William James was one of the first psychologists to prominently espouse the idea that how we see the relationship between mind and body can have significant impact on our mental health (this article includes a succinct, less academic, description of one of James’ ideas). Just prior to the discussion above I was having a conversation with another consumer/survivor who was passionately making the point that how we think, how we feel, how we act, and how our bodies respond, are bound up intricately and inseparably. This means that changing any of those things has an impact on the others.

This interconnectedness is a foundation of mental health. There is considerable evidence that pre-natal experiences of stress, poverty and famine by mothers can increase the risk of schizophrenia for their offspring decades later. Psychiatry is becoming ever more focused on the structures of the brain and the chemical reactions within them. However this approach is marginalizing wellness strategies, like talk therapy, whose first line of approach is our thinking, our feelings, and our actions. There is a growing body of research suggesting that even adult brains show neuroplasticity - the ability to change physiologically in response to circumstances. When medicine frames unusual experiences of the mind as symptoms of a diseased brain, little room is left to explore circumstances under which our minds, and perhaps our brains, can change so as to make these unusual experiences less problematic and perhaps, at times, even constructive.

There is no escaping the fact that our minds can behave in extremely dangerous ways and that as a society we must cope with these circumstances. However healing those of us who have had such experiences involves situating even these extreme experiences within a larger psychological and wellness framework rather than treating them in ways that condemn us to the realm of the chronically diseased.

Health care is trying to achieve a shift in emphasis from disease treatment to disease prevention. For the reasons above psychiatry needs to be at the forefront of this trend, and perhaps may well need to situate itself beyond it. This means starting to see people and our unusual psychological experiences in terms of neurodiversity, rather than condemning our minds entirely to the realm of disease. That is not about ignoring the fact that extremely dangerous situations can arise when our mental health is neglected. It is about recognizing that the only real path out of these situations lies in approaching treatment with the fundamental belief that wellness is founded on being able to see ourselves and our experiences holistically, not divisively. Pathologizing unusual, even harmful, experiences of the mind as symptoms of an intractable physiology can only ensure that they remain pathological and intractable.

For those living with a major psychiatric diagnosis, wellness involves managing potentially harmful psychic experiences that often never completely go away. If mental health treatment is to improve, psychiatry must constantly rescue what it sees as symptoms of mental illness from a disease mindset that requires us to “defeat” our illness. Otherwise this mindset can easily put us at war with ourselves. It is a very difficult, even paradoxical, challenge for a doctor. However it is only in rising to that challenge that psychiatrists can help us to manage potentially harmful experiences in ways that enable our well-being.

 

 

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Living with a psychiatric diagnosis

My relationship with, and choice of, language used to describe the experience of being diagnosed with a major mental illness continues to evolve. I am cautious about using the term “mental illness”. However I do like the term “living with a psychiatric diagnosis” because it captures the fact that a lot of what is involved in coping with a diagnosis of major mental illness arises because of the experience of having been diagnosed, and subsequently treated by the psychiatric system.

Happy New Year!!!!

Last night I hung out with a friend who has known me since I was 14. We have been very close since the age of about 16. We have never drifted apart; we have always stayed in touch though that might only mean seeing each other once a year. By chance rather than design, as each of us has moved we have lived simultaneously in three different countries, and seen each other in each one. Last night as we were sitting on the subway together about to say goodbye she turned to me and thanked me deeply for our friendship. Not three seconds before I had started thinking the exact same thing; she beat me to it. Wishing you more of those moments in the year ahead. Happy New Year!!!

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Key Learning around ADD

Wow! More than four months since I last posted here!

August was just the beginning of a fairly bumpy period for me. Although I often talk about my challenges in terms of mood; overall at this stage in my life I would say my mood instability, on its own, is a fairly minor concern. What is more a problem is the feedback between challenges with attention and focus, and their consequences, and depressive mood. Or, in plain language: I struggle to get something done and get depressed about it, which makes it even harder to get things done. At a certain point all of my energy goes into coping / functioning and there isn’t any left for things like posting here … though when I am diligent I rediscover that writing usually helps in the overall coping effort.

The problem with challenges with focus and attention is that they can seem so intractable and can thus be deeply frustrating. Having a day when I literally lose hours of work time  because I have locked my keys in my car is something that can happen to anyone. But when something like that happens to you daily the situation becomes corrosive to your sense of self, of being capable.

Perhaps the most significant learning for me since being diagnosed with ADD, along with bipolar disorder, is captured in this article in the New York Times. The essential point of the piece is that attention problems in adults (and arguably even in children) are a function of context. With the right work environment and stimulation many people with ADD not only function well, but can be exceptional in some ways. The deficits remain, to some extent, but one has to look hard to find them. In the right context people with ADD can manage to cope/compensate in ways that make the condition a minor, even amusing, concern. This is how for most of my life I failed to recognize how severe my attention problems can be. It was only when my work changed that I found myself struggling.

That struggle can be real and have grave consequences. When a failure to focus has an impact on one’s income, and becomes a barrier to meeting basic obligations like filing taxes, the outcomes are sobering, to say the least. Add to that the fact that many doctors fail to understand how serious ADD can be for adults, and fewer still are willing to take on the complications that come with trying to medicate for ADD in the context of bipolar disorder (ADD is often treated with stimulants, which can precipitate mania), and the situation can become deeply depressing.

As the New York Times article points out, context can be a solution. Changing mine is a work in progress.

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kersplat

The last few months have been exceptionally good ones for me for the most part. Then about three weeks ago I got very physically sick (awful stomach bug), which knocked me out for almost a week. I never really caught up on my work obligations but that didn’t become clear until I was trying to prepare for a three-day out-of-town sailing trip while also coordinating several gatherings to celebrate my birthday (the idea of a single large gathering of good friends being too impersonal for the introvert in me).

In any case things fell apart last Saturday (today is Wednesday). I think I am only now beginning to pick up the pieces. In the spectrum of mental-health dysfunction five completely unproductive, over-eating, bed-bound days, are not really all that bad. However when one is running one’s own business without a partner that kind of inattention creates a calamity of unattended obligations. All the more so because in many ways my business is doing better than it ever has, with new clients calling every week.

(One would think that faced with such a situation I would pursue the rational solution: nose to the grindstone, work, work, work … Alas, some brains are not so well controlled, and mine, at least when I am alone, is one of them.)

So I cancelled two gatherings planned for my birthday, missed my planned sailing trip, justifiably pissed off the person I was to have gone sailing with, spent another day wallowing in bad (Freudian slip), and even as I climb out of it now, am still feeling pretty pessimistic about life. Finally, with the help of one of my staff, I’m starting to tackle what feels like a mountain of outstanding work commitments.

In the middle of it all news comes of Robin William’s suicide. Given my slump I was already actively, and thank God, successfully, beating away suicidal thoughts. Perhaps for that reason the news did not throw me as much as it otherwise might have. Nevertheless it is deeply saddening to lose yet another talent to the ravages of mental illness. (Addiction, to me, is also mental illness, and the deaths of Phillip Seymour Hoffman and Whitney Houston are two others that resonate harshly for me.)

I did think “there but for the grace of God go I.” And so, although it is a painful gift, I came to realise that William’s death brought some ease to the self-judgement that so often accompanies depression. If someone so talented, so capable, so wealthy, and apparently well-connected could lose a battle that I was still fighting, perhaps I should not judge my circumstances and my feeble efforts so harshly.

Ultimately the truth remains that despite all the resources that one can only imagine Williams had at his disposal, he still could not slay the demons that tortured him, and in the end chose the only path that he felt would guarantee him peace. With deep feelings of both loss and compassion I sincerely hope he has found it

 

Just life

Was thinking about how many posts I have in draft form; my style of writing (preachy?); how little I talk from the heart (from my perspective — I’m sure most of this seems very personal info to share publicly) about mental health challenges, particularly in ways that are most meaningful to others with a serious psychiatric diagnosis.

One of the things that is meaningful to most of us is medication. I’ve been doing remarkably well in the last four months. While there have been some major positive developments in my life that have helped, mood is always an underlying thing that go south no matter how much is good in your life. In the last year I’ve changed my meds completely and I think that’s really helped:

Instead of relying on cipralex, wellbutrin or a combo, omega fatty acid supplements, and intermittent clonazepam, I’m now on daily lamotrigine and daily moclobemide. Clonazepam remains a powerful last-resort intervention, but I use it far less frequently (usually 2 – 3 times per month for rapid mood stabilization). Moclobemide is probably the best antidepressant that I’ve ever taken. It’s amazing that old drugs can be so powerful and so underutilized. My biggest fear is that it may be pulled from the market. Expecting to return to the Omega 3-6-9 supplements soon.

Aside from that, saw this on Facebook and thought it was pretty cool.

That’s it!

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Loving ourselves – the Coles’ Notes version

There are so many dimensions to loving yourself. I got a wonderful note from a friend thanking me for teaching him to love himself more (not sure how I did that but happy to be thanked). I was about to send him a response talking about that journey and then realised that my words for him are words for me, and perhaps for all of us.

Learning to love yourself takes practise and effort. It’s one thing to love ourselves in terms of our thinking: learning to think positively about ourselves and unlearning thoughts of self-judgment. Those thoughts include our beliefs about ourselves and visions for our own future as well as seeing ourselves as unworthy or in ways that are negative and limiting.

It’s another thing to love ourselves in terms of our behaviour. That would include how we eat, exercise and take care of our bodies, and also how we respond to triggers that are rooted in past experience rather than the present moment.

Both are life-long projects but where these two spheres of loving overlap can be especially challenging territory: how do my beliefs about myself and my capacity to achieve, do, or be something affect my choices and actions every day? Learning to be comfortable in our own skin and lose self-consciousness so as to be unaffected around others is another area of overlap which for many of us can be very challenging. And addictions are another area where thinking and behaviour overlap to a degree that makes it difficult to love ourselves through our actions.

What is fascinating to me is that even when we have been loved deeply, all our lives (as I know I have been) there are still ways in which we neglect to love ourselves. Perhaps that is because love is not just a feeling. Love is something we do by committing and choosing to act in ways that are caring. And acting in caring ways is not as simple as it sounds, and learning to do so takes wisdom, practice, and effort. And that’s no different when the person I am loving is me.