Bipolar disorder and media consumption

Recently, on Twitter, I confessed that I had not been able to complete reading NeuroTribes (a very interesting book, and also a lengthy one). The other person insisted that a PhD student should be able to read a book and accused me of lacking academic integrity — basically, that I am lazy and don’t deserve my PhD.

I’m here to say that attitude is inherently ableist. But to give the benefit of the doubt, perhaps most people don’t know that bipolar disorder actually can affect your ability to read. I learned to read early as a child — I was a prolific consumer of text, and I had a college reading level in elementary school (this is called hyperlexia). But after being medicated for bipolar disorder, my ability to sustain focus and momentum while reading a long document has been very limited.

Lithium is probably the biggest offender. It kind of affects how you see words on the page — like a pseudo-dyslexia, the words seem kind of blurry and distorted. It can be impossible to read full books. I can still read journal articles because they generally have a defined structure and an abstract. I can also read poetry, which I enjoy. I recommend seeking out these kinds of texts if reading is something you struggle with.

Most of all, I want you to know that this is common, you are not alone in having an acquired inability to read and you still deserve your career, whatever that may be. It’s not a matter of “intellectual thoroughness”; it’s part of a disability, and it’s more common than you think.

I also find it difficult to watch videos, TV, or movies. The information conveyed through video media covers many modalities — sound (music), speech, visuals, movement (spatial), and the overall plot you’re supposed to be following. Sitting for the length of a movie is hard, but it’s also just hard to follow so many things at once. My brain gets overwhelmed with too much information of different kinds to process (evidence of poor sensory integration, a symptom of autism). But it helps to reduce the overload by using captions (combining speech with visuals, thus reducing the number of information modalities) or watching something animated, which compresses the demands of visual and spatial information greatly.

Have you ever had trouble consuming media?

What strategies have you used?


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

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


What’s it like to be in a psychiatric hospital?

I’ve been hospitalized 17 times. At this point, it seems perfectly routine. I pack my carry-on suitcase, grab my Pikachu stuffie, and I’m on my way. I know what to expect. However, whenever I’m in the “psych corner” of the ER, there’s always someone being admitted for the first time, and they’re usually crying. I cried during my first admission, too — my therapist told the police to wait until I stopped to put me in the car. I’d read about the hospital online, but still, I didn’t know what to expect and I was very scared.

So, if you’re ever hospitalized, here’s what to expect.

Limited Choices

Where you can go, what you can do, and even what you can eat are very limited when you’re in the hospital. Psychiatric units vary in size and structure, but it will likely be smaller than you would like. Everyday choices are made manageable for people with acute psychosis or severe mood disturbance, which means there are not very many choices.

Here are some activities which are generally allowed, and which I personally recommend:

  • Reading books. The choices of books on the unit are likely to be very slim, so I recommend bringing your own books. Easy to read books may be for the best, as medications can make reading challenging; I enjoy middle grade and young adult fiction.
  • Talking on the phone with friends and family. There is always a phone. I have been in really outdated units where the phones were actual pay phones that required quarters… but in my experience, this is very rare. Phones are usually made unavailable during groups and meal times.
  • Talking to other patients. The other patients in the hospital are likely to be interesting. Some of them will seem “normal” and some of them won’t; a few may be very agitated or aggressive. Don’t be afraid of them, they don’t mean you harm and if things get out of hand the staff will know what to do. It’s a good opportunity to get to know other people with mental illness, and I’ve had many interactions which I’ve remembered for years.
  • Card games. Sometimes there are board games, which may or may not be in playable condition, but there is almost always a deck of cards. Playing cards is a great way to pass time and interact with other patients at a level that isn’t very demanding. I learned to play Rummy 500 in a psychiatric hospital!
  • Take a shower. It’s easy to forget that you need to shower when everyone is wearing pajamas and look like they’ve been in bed for a year, but showering is something that can affect how the psychiatrists see your level of functioning. It’s also a way to pass time in itself. Sometimes you can bring your own shower products and deodorant, which I do recommend because it will make it seem like you’re doing your whole routine.
  • Go to groups. There will likely be a few groups throughout the day, particularly on weekdays. They are likely to be somewhat simple and plain, which makes it so everyone can participate as much as possible. Going to the groups is probably the single biggest action you can take to expedite your discharge. It’s not the only factor and it won’t make a miracle, but it’s worth a try.
  • Go outside. There will be some kind of small outside area. Sometimes it’s on the roof, sometimes it’s a courtyard or a fenced-in patio. You can usually go outside at designated times during the day, weather permitting.

What to bring and what not to bring

Hospitals do vary in their policies and if possible, you can look up their website or call in advance to see what they allow. But this often isn’t possible because when you go to an ER for psychiatric reasons, you could be (and often are) sent to a completely different hospital. Therefore, use your best judgement and pack what you can. I pack a small roller suitcase so that I can fit everything I want.

  • Don’t bring electronics. Cell phones will not be allowed, nor laptops or tablets, or anything that has the ability to take photos, record videos or audio, or access the internet through a browser. However, there are a few exceptions which may be made at some hospitals — UCLA has allowed me to bring old Game Boy consoles, which aren’t capable of anything except playing the inserted cartridge; a basic Kindle e-reader; and an MP3 player with Bluetooth headphones, no wires and nothing with any of the aforementioned capabilities. Bring chargers for your phone and any of these items if you bring them, but be aware you won’t be allowed to charge in your room and staff will supervise your items while charging. (P.S. I’ve heard that electronics are allowed in the UK, so I can only speak for the US.)
  • Bring a light jacket. If you live in a cold climate, you can also bring an outside jacket, but you will want a light jacket for inside the hospital because it’s usually a little bit cold in hospitals. If you bring a hoodie, make sure it does NOT have strings; the same goes for sweatpants and shorts. Strings will probably not be allowed.
  • Bring clothes that make you feel normal. Some people will specifically say to bring comfortable, casual clothing. That is a good idea, but I think the most important thing is to bring clothes that make you feel like yourself, because it’s very easy to feel disrupted when you’re in such a different environment than your usual life. Don’t wear a tuxedo or a $500 designer item, because you’re probably gonna spill cranberry juice on it and you know they wash everything on hot, but wear whatever you want — as long as it doesn’t have strings.
  • Bring slip-on shoes. Some hospitals will not allow you to wear shoes at all. The fancy hospital socks with treads on the bottom are very real, and you’ll get some in the ER. If shoes are allowed on the unit, you’ll have to take the laces out, so bring shoes without laces. Definitely don’t bring boots or anything with a heavy sole, as those will probably not be allowed.
  • Bring books.
  • Bring shower supplies and deodorant. It’s not essential, so if you don’t have space, don’t bring them. But I like them.
  • Bring a comfort item. I always bring my jumbo Pikachu stuffie. Something small would work, but I’m excessive.

Things to be aware of

  • Quiet room. That’s a euphemism, for sure. Most hospitals have one although I think at UCLA they just move you to a different unit if you’re in that place. Basically, this is where they put people who need to calm down. Injectable medications (seems like Zyprexa or Haldol, usually) are often involved, as are restraints. It might actually have padded walls like you see on TV. But if you’re worried about going there, in my experience, you’re probably not going there.
  • Furniture. You won’t notice this until you’ve been in a few hospitals, but they all have a similar physical design with very similar furniture. That’s because they’re designed so you can’t tie anything onto them, if you were to have strings. All safe furniture looks pretty much the same, and it’s very 70s for some reason.
  • Smoking. There are a minority of hospitals that still allow you to smoke cigarettes at designated times. Feel free to bring your preferred kind if you do smoke, but don’t load up; in hospitals I’ve been where smoking is allowed, there are usually house cigarettes available. They are very cheap and seem to be made with cigar tobacco, but trust me, it’s better than nothing.
  • Voluntary status. Not to scare you, but even “voluntary patients” are not 100% free to leave whenever you want. It is better to be admitted voluntarily than involuntarily, but if you do try to leave on a voluntary basis and your treatment team feels strongly that you’re not ready, your status can be changed. At least, mine has been in the past. So it is kind of a catch-22 situation. Some hospitals are more mindful about this than others. It also seems to vary by state.

I hope this overview has been helpful. And if you’re ever hospitalized, don’t worry; it is an adjustment, but most people get used to it very quickly. It’s designed that way. Meals, groups, outside breaks, and pretty much everything will occur at the same time every day. It’s weird how you start to feel hungry for dinner at exactly 5 PM. But it happens quickly!


How I explain bipolar disorder to people

I’m quite open about my bipolar disorder diagnosis (partly out of necessity) and so, I often get asked questions like, “What is bipolar disorder really like?” I’ve come up with a few good answers to explain to curious friends, family, and coworkers the reality of bipolar disorder in a way they might understand.

1. It’s kind of like epilepsy

Although bipolar mood episodes occur on a longer timescale, a mood episode has a lot in common with a seizure. It can be triggered by something or it can come on for seemingly no reason, and the person has little control over it (although to some extent we control our actions in response). It can end spontaneously or with medical intervention.

Recently, overlap in the neurobiology of bipolar disorder and epilepsy has been discovered. In fact, some medications that are effective treatments for epilepsy are also very effective treatments for bipolar disorder — prominently including Lamictal and Depakote, but also others.

2. Technically, mood episodes last 1-2 weeks or more

At least, according to the DSM (a manual of diagnostic criteria for mental disorders), they do. But that isn’t always the case and many experts dispute these requirements as being too restrictive in real life. My own bipolar disorder is rapid cycling, and I can have episodes that last for only a couple of days.

3. Mania isn’t happiness

Most people understand that depression encompasses sadness, although it also encompasses feelings of emptiness, numbness, profound lethargy, and irritation. They assume, then, that mania (being the “opposite” of depression) is a state of happiness or euphoria. This can be the case, but it often isn’t; mania can be angry, agitated, restless, irritable, confused, and it may include hallucinations and/or delusions which can be very scary or troubling. Further, mood episodes can be of a mixed type, including both manic and depressive symptoms. These can occur at the same time or in a rapidly alternating fashion. Mixed episodes are actually quite common.

4. There’s one symptom that is practically universal

And that’s changes in sleep. During mania, people sleep less — they may not even sleep at all. Research has shown that sleep changes actually precede manic symptoms; they may be the very first sign of a manic episode.

Meanwhile, people with bipolar depression usually sleep too much. Some experts (including my psychiatrist) believe that when people with depression severely oversleep, it’s a sign that they have latent bipolar disorder (which is to say, they just haven’t had a manic episode — yet).

5. There’s a pattern

One of the differences between bipolar moods and “normal” moods is that, in the majority of cases, there’s a distinct pattern to bipolar mood episodes. They don’t occur in a random order. Most people have either mania then depression, or depression then mania. It’s rare for people to flip between them. So, somebody that starts with depression will typically always start with depression.


So, that’s what I explain! Have you ever been in this situation? What did you say? Leave a comment!