Pediatric-onset bipolar disorder

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Traditionally, it has been thought that bipolar disorder emerges most typically in the early to mid 20s of a person’s life. It has been known since the time of Emil Kraepelin (circa 1921), however, that children can be affected by this illness. While adolescent onset (mid-to-late teens) is now recognized as common and similar to the presentation of adult bipolar disorder, pediatric onset bipolar disorder remains the subject of debate, and its presentation is somewhat different than adult bipolar disorder.

Why do some children get bipolar disorder?

We do have some idea why some people get bipolar disorder as adults, and others get it much younger. The effect is known as genetic anticipation, which occurs when certain genes accumulate in later generations. We know that bipolar youth are highly likely to have members of their family belonging to previous generations (parents, grandparents, aunts, uncles) with bipolar disorder. When those genes add up over successive generations, and the person has a LOT of the polymorphisms that cause bipolar disorder, they tend to get it a) younger and b) more severely. This also helps to explain why pediatric onset bipolar tends to be a clinically severe manifestation.

While adolescent-onset bipolar is not uncommon, bipolar disorder in children under the age of 12 remains rare. Nonetheless, it is important to diagnose. Studies have found that for every year of untreated illness, a child is 10% less likely to experience a resolution of symptoms for 2 months or longer — yet, an average of 10 years passes between symptom onset and treatment.

There is often a long delay between onset of symptoms and treatment. For me, it was 8 years (possibly more).

How does pediatric-onset differ from adult bipolar disorder?

Pediatric onset bipolar is commonly characterized by very rapid cycling. This is an uncommon phenotype (what the disorder “looks like”) in adults, but the majority of children with bipolar disorder are rapid cyclers. Chronic irritability is also common and is part of the reason pediatric bipolar disorder is so controversial. An episodic pattern of moods — whether the manias are dysphoric or euphoric — is arguably the hallmark of bipolar disorder; chronic irritability doesn’t seem to fit the bill, and in children who do not experience depression, an alternative diagnosis may be more appropriate. Nonetheless, irritability is a common symptom even among those children who seem to clearly meet the criteria for bipolar disorder.

Rapid cycling is the rule rather than the exception in children.

What happens to children with bipolar disorder?

Barring tragedy, children with bipolar disorder grow up to be adults with bipolar disorder. They need to be maintained on medication for the rest of their lives, or they are prone to relapse, just like any bipolar patient.

In my anecdotal experience (my symptoms started before the age of 10) I still have rapid cycling and dysphoric mixed manias as an adult. I urge those who are doubtful that rapid cycling bipolar is “real” or that it is somehow less valid to consider that many adults with this phenotype first experienced bipolar symptoms as children.

Recommended reading about bipolar in children

If you want to learn more about bipolar disorder in kids, I recommend the book The Bipolar Child by Demitri Papolos. It is really informative and helped me to better understand myself, as someone who had pediatric onset. I sat down in a library and read it all within a couple of hours.

After a suicide attempt

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Caution: this post contains explicit discussion of suicide

Two days ago (on September 10th) was World Suicide Prevention Day. Although it is important to address prevention of suicide attempts, the strongest predictor of a fatal (or “completed”) suicide is a history of previous, non-fatal suicide attempts. The risk factors for suicide attempts are more diverse and include: family history of suicide, early onset of bipolar disorder, extent of depressive symptoms, increasing severity of affective [mood] episodes, the presence of mixed affective [mood] states, rapid cycling, comorbid Axis I disorders, and abuse of alcohol or drugs1

Most suicide prevention effort focuses on people who are naive to psychiatric treatment and have reached a crisis point: people who don’t already have a psychiatric point of contact, and usually people who have never been treated in an inpatient setting before. In my experience, most people do not continue using crisis lines or similar services after they have been hospitalized once. Surmounting the fear and stigma around hospitalization itself is a primary reason crisis lines exist. Crisis lines are staffed by severely underqualified volunteers, who are usually following a script, and only have two action moves: call an ambulance, or tell you to go talk to someone else (sometimes your health insurance company). Yet, people find calling a crisis hotline less formidable than simply admitting themselves voluntarily.

But what about those of us with chronic illnesses, with volumes of psychiatric history, who have been admitted many times? This service is clearly not meant for me. If I spoke to a crisis line on what to me is an an average day, I might find myself being dragged to the ER and with an $800 ambulance fee to boot. There is no exception for chronicity. The stakes of a mistake are high, and the crisis line operator is equipped with a high school diploma.

There’s a gap between services for first-episode patients and services for profoundly disabled people who live in an institutional setting. After my close-to-fatal suicide attempt about two and a half years ago, I had to navigate what exactly life looks like after a serious suicide attempt. I consumed an amount of lithium equal to the 50% lethal dose in rats, and an antidepressant that is also a potent anti-emetic (anti-vomiting) drug. I knew I would absorb more of the lithium if I delayed the onset of (inevitable) severe vomiting.

I was hospitalized for only 16 days. The attending physician treating me thought I should go to a residential treatment program, but I was supposed to be at an academic conference and I begged to be realized in time to go. The head of the clinic evaluated the situation and decided to release me. I was discharged within hours of my flight to Europe. After the conference, I was enrolled in a partial hospitalization day program. The official length of the program was 8 weeks; I was probably enrolled for 4 months. My psychiatrist met with me nearly every day.

We tried a lot of medications, but for quite some time I was not permitted to take lithium. This was unfortunate, because lithium is probably the single most effective drug I take. I have cycled through almost every atypical antipsychotic: Seroquel, Abilify, Vraylar, Zyprexa, Saphris, Geodon… I’m sure I’ve forgotten something, it’s more than I can keep track of. I tried Depakote and Lamictal. Nothing has the same effect as lithium. Ironically, lithium also has a specific anti-suicide effect.

I continued to be suicidal throughout and beyond the partial program. I am lucky that my psychiatrist works well with me.

Chronic suicidality is probably more common than people realize. It doesn’t appear in the media. It’s taboo. You fear to acknowledge it exists somewhere. When we talk about improving mental health services, let’s give a little more attention to the people for whom posting a status update with the s-word in it is reason to panic and report it to Facebook headquarters.

References

  1. Hawton, K., Sutton, L., Haw, C., Sinclair, J., & Harriss, L. (2005). Suicide and Attempted Suicide in Bipolar Disorder: A Systematic Review of Risk Factors. The Journal of Clinical Psychiatry, 66(6), 693–704. https://doi.org/10.4088/JCP.v66n0604

Psychiatric disorders and discrimination by medical professionals

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There is much that could be written about the damage done by bad psychiatrists, but this post will specifically focus on non-psychiatric medical professionals: doctors, nurses, everyone involved with it.

Once I presented to the ER with a large abscess from a skin infection, and in great pain. I told the triage nurse that I had this abscess, and showed it to her (it was not subtle). She proceeded to look through my chart and started asking me about my bipolar disorder. I told her what she asked, and of course we got to “Are you planning to hurt yourself?” and I said no, because I wasn’t, I just really needed my abscess to be drained by a doctor.

Naturally, then, she put me in psychiatry and had a psychiatrist come speak to me. I told the psychiatrist what I told the nurse and showed him the abscess. He was horrified by it, and said he’d call my psychiatrist. After he spoke to her, he moved me to the medical area and gave his psychiatric stamp of approval. Finally, a medical doctor arrived and drained my abscess.

In retrospect, is it a big problem? I think it is. What if my condition were even more time-sensitive? They wasted significant time getting me a psych eval when I was not presenting with any major psychiatric symptoms, I just happen to have a chronic mental illness that I will have in my chart forever. What if I was having a heart attack? Would I have to get a psych eval because I’m bipolar?

If you have a label like “bipolar disorder type 1” they will always look for a psychiatric cause for your symptoms, even when the evidence doesn’t suggest it’s psychiatric (like, the huge abscess). They assume you are professionally crazy and anything you say is cause for suspicion, instead of an honest report of symptoms. Putting patients presenting with tangible physical illness in the psych area just because they have a diagnosis, but are not presenting with symptoms, is discrimination.

Anxiety and mania

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Recently, The Mighty published an article about the differences between anxiety and hypomania. However, I wanted to complicate the discussion by bringing up something that breaks the juxtaposition of anxiety and mania: primarily anxious mania, which is most likely a mixed episode associated with bipolar type 1.

The author describes how her anxiety leaves her “immobilized”. This can actually happen in mania, too — but usually not in hypomania. Hypomania is often very productive. Full mania is no longer productive — it’s frantic, potentially confused, and may be characterized by manic stupor. Emil Kraepelin used this term to describe a flight of ideas and elevated mood (not necessarily happy, but revved-up) combined with psychomotor slowness or immobility. I’ve been in this state, and I experienced it subjectively as intense feelings of anxiety paralyzing my every move. This might also be referred to nowadays as catatonia, and something similar can occur in severe depressive states; however, the catatonia that coincides with mania is likely excited catatonia (characterized by purposeless movements rather than being completely still).

Hypomania isn’t rare, exotic, or exciting to me. It’s just part of my life, and I take advantage of it when it comes around — which it will, no matter what. But, to me, full mania is to be avoided. Anxiety is also a daily part of my life, but the anxiety and paranoia I experience during a manic episode is even more excruciating than it usually is. Juxtaposing them as discrete, separate states can only take you so far in understanding what mania is and how it affects people.

One bipolar person’s drug regimen

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Currently, I take 8 medications for psychiatric reasons. I’ve also been on many others — including most of the atypical antipsychotics, several anticonvulsants, antidepressants, and more. These are my current drugs ranked in terms of how essential they are (if, for example, I could only get some of them, perhaps due to a catastrophe):

  1. Lithium — Big Pharma has yet to come up with something better. It could never be patented, it wasn’t paid for by anybody. It actually works. And it’s all-natural. But also, it sucks. Nature is brutal.
  2. Haldol — Indispensable, though I might be switching to Thorazine in the near future. I don’t picture myself living without an antipsychotic again. Typicals seem to work better for me than atypicals did, though I’ve notably NOT tried Risperdal (even though it’s a good fit for my symptoms) or clozapine. Both were considered, though.
  3. Ativan (lorazepam) — My symptoms tend to cluster around anxiety, insomnia, and irritability — maybe paranoia — all things helped by benzodiazepines. If it were not so problematic, I might have ranked it #2. It’s the best immediate symptom relief I can get aside from maybe sublingual Zyprexa (olanzapine).
  4. Adderall — I would never actually achieve anything in life without Adderall. That said, my need to do something with my life is inherently superseded by my need to be alive, which is why it ranks #4.
  5. Lamotrigine (Lamictal) — An anticonvulsant medication. It seems to be doing something, because I become depressed without it. Though I’m not exactly sure what it’s doing.
  6. Gabapentin — I’m supposed to be using it for anxiety to offset my lorazepam use. It’s also useful for severe headaches. I still feel the pain, but I kind of don’t care, like the pain just doesn’t command my attention.
  7. Clonidine — It’s a blood pressure med, but I’m using it for insomnia. I cycle through medications for insomnia because they all lose their effectiveness eventually. I haven’t been on clonidine before so I don’t know how long it will be useful for. Other drugs I’ve used for sleep: Trazodone, Remeron, Ativan, Seroquel (and other atypical antipsychotics)…
  8. Diphenhydramine (Benadryl) — An OTC drug! The original antihistamine. I take it as 50mg softgels (two of them, which is slightly more than the bottle indicates — consult your doctor). Sometimes works for sleep, not super reliable and fades quickly. Useful if I have a cold or flu because Sudafed is not the best choice for my wiring. Also potentially protective against Haldol-induced side effects. So overall, something I take regularly, but not every day.

Anyone want to share their regimen?

I’m lucky to have my bipolar disorder

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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.

Best books for people diagnosed with bipolar disorder

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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?

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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 disease, 2(3), 209–226. https://doi.org/10.1177/2040622311399173