I’ve been thinking lately about the blurred and perhaps ultimately nonexistent line between physical and mental disabilities. And how difficult it can be from the outside to understand why a certain accommodation is needed or a person could require physical accommodations for mental disabilities. And how sometimes the things that help me manage my disability can be really annoying and burdensome. And hey, I can illustrate all of those points by talking about one of my prescriptions – lithium. So please read along with this not at all official, comprehensive, or professional review of the medication!
Lithium is used primarily in the treatment of bipolar disorder and while it’s called a mood stabilizer, it’s more effective at controlling mania than it is depression. It’s not sufficient to control my depression, so I take some other stuff as well. I think it’s controlling my mania in that I haven’t been manic in at least 4 years or so.
Lithium carbonate is the actual compound used in the pills I take – the chemical element lithium with some carbons stuck on it, making it a salt. Lithium is pretty cool – it’s thought to have been created in the Big Bang, it’s the lightest metal and has kinds of industrial uses, including heat-resistant glass and ceramics, and it’s in batteries! It’s produced mainly in Chile and Argentina. It is also quite pretty and shiny. It was likely used as a treatment for mania beginning in the late 1800’s, but it was when Australian psychiatrist John Cade documented its effects in 1949 that usage became widespread. It was approved by the US Food & Drug Administration in 1970.
Indications and Dosage
Well, the main indication that it might be a drug for me was my wild and uncontrolled mania. I’d started on antidepressants to address my very serious depression, only to skyrocket into terrifying mania, put myself at immense risk, and end up hospitalized. At which point I was extremely interested in finding something that would prevent that from ever happening again. One would hope that doctors might be able to figure out an indication a bit earlier in the process, but hey.
Dosage has been 3 pills every day. I’ve taken thousands and thousands of them.
I’m not a doctor, chemist, or pharmacist, so I’m not going to try to talk about what the drug may or may not be doing to this or that neurotransmitter or neuron reuptake process. Especially since most sources say, basically, “It is not really known how lithium works.” If you’re a pharma nerd like some people I know, you may enjoy reading some alternate theories of the effect of lithium on the brain – here’s a good place to start.
“Fine hand tremor, polyuria, and mild thirst may occur during initial therapy for the acute manic phase, and may persist throughout treatment. Transient and mild nausea and general discomfort may also appear during the first few days of lithium administration.”
My hands hardly shake at all anymore, but there were years where they would tremble almost all the time. I had a very hard time with fine motor skills like handwriting (or putting on eyeliner – yikes). My polyuria (lots of peeing!) is directly related to my mild thirst – it’s very rare to see me without a beverage. I make sure I have lots of liquids in the car, I smuggle something into the movie theater because I can’t go that long without drinking something. These all have or continue to require accommodation – my hand tremor meant I couldn’t take exams by hand and my signature would sometimes look a little different (which was really fun to try to explain to the bank). I have to pay the exorbitant prices for bottled water in airport terminals so I have enough to drink on planes. When going to court for work, I have had vigorous discussions with the sheriffs manning the metal detectors at courthouse doors about whether I’m allowed to bring my water bottle inside (conclusion: plastic bottles ok, aluminum reusable bottle not ok, average delay created by water bottle issue is 10 minutes every time I go to court). It is of course not at all obvious how these accommodation needs are associated with my underlying mental disability, which makes people doubt whether I “really need” these accommodations and why I could possibly have muscle issues when I have a mental illness.
“Muscle hyperirritability (including twitching), stupor, nausea, indigestion, drying and thinning of hair, psoriasis.”
I do have muscle twitches, especially my left eyelid. I do need at least 9 hours of sleep a night, but that could be my other meds or my depression rather than a side effect. Nausea and indigestions persist, but nothing as bad as when I first went on the meds and had to get up to take them exactly on time and sit out in the dorm hall at 6am eating a bowl of cereal so I would neither wake up my roommate or throw up my pills. My hair and scalp are definitely affected – I have dry flaking skin on my scalp and, in a recent development, along my eyebrows! Yay! I haven’t yet needed accommodations from work to get sufficient sleep, but often times find myself explaining to friends that while I really would like to go to such and such event on a weeknight, I have to be home and in bed by 10pm, non-negotiably. This leads them to think of me as not very fun and a bit of a fuddy duddy.
There’s definitely a significant correlation between lithium and weight gain. Blah.
Warnings and Precautions
It turns out that the therapeutic level of lithium is pretty close to the toxic level of lithium and the amount of the drug in the bloodstream has to be carefully regulated. Because lithium carbonate is a salt, it can build up in the kidneys, which means that my water and salt intake also make a difference to my lithium levels. So the drugs come with a warning to “avoid becoming overheated or dehydrated during exercise and in hot weather” and to be careful about consuming not enough or too much liquid. Once after walking up a long hill on a hot sunny day, I could feel that I’d sweat too much and was very dizzy and confused from the concentration of the drug in my system and since then have been much more careful.
Taking a dose that is so close to being toxic also means that I periodically have my blood tested to measure the levels. It’s a bit of a hassle, as it has to be done first thing in the morning without having eaten and it’s in the opposite direction from work and the parking garage there is a nightmare. And I don’t love getting stuck with a needle, though I’ve found I can avoid getting lightheaded if I just don’t look at the blood coming out. The worst part for me is the bruise I get – I bruise easily so even a clean stick leaves the inside of my elbow blue and purple. And no, jokes about how I look like a heroin user are not funny, and yes, trying to cover it up when I go to court or meet with a client can be quite a hassle. (Especially as I have a history of self-harm and thus a history of trying to cover up my arms to avoid comments, this is also a bit of a trigger for me.)
Usage in Pregnancy or Nursing
Lithium is in the US FDA Pregnancy Category D, meaning “There is positive evidence of human fetal risk based on adverse reaction data from investigational or marketing experience or studies in humans, but potential benefits may warrant use of the drug in pregnant women despite potential risks.” NAMI has a very good discussion of risks and considerations during pregnancy, including a recognition that for some women, it’s not an option to stop taking it. It does pass into breast milk and can be transferred to an infant.
I think about this a lot. Even if I weren’t worried about the risks of passing on my bipolar disorder to my child, I do not think that going off lithium for any period of time would be safe for me. While it’s possible to stay on it during pregnancy, it does create risks and is certainly a far cry from friends of mine who are eating only hand-prepared food during their pregnancies to avoid preservatives and chemical additives.
Except for a brief flirtation with Depakote years and years ago, me and lithium have been hot and heavy since the way back. And because I expect us to be together forever, I see these side effects and potential toxicity as realities that I have to accept into my life and accommodate as best I can rather than things I could choose to be without. And I’d likely put up with a whole lot more than this before I considered breaking up. I just wish people could understand us better and help me get what I need – water, blood tests, tolerance for wonky handwriting – so our relationship can work.
10 thoughts on “A Patient’s Guide to Lithium”
Even with all that, I wish lithium had worked for me. Better the long summer I had trying to get the dosages right than the four! medications I have to take now to try to approximate the effect, with all the side effects they entail. I know four isn’t a huge number to a lot of folks, but I’m also on birth control, allergy meds, migraine stuff and GERD drugs, plus whatever OTC stuff I need to make it through the day with other issues, so it’s just a lot of pills to ingest. And of course none of them coincide timing-wise, really, so I’m at the drugstore at least once a week picking up something or other.
I <3 my lithium…
You missed off a biggie on the bad things it does – can stop your thyroid gland from working. Since hypothyroidism is something that can cause depression in itself, this is of course a bad thing. My thyroid bounces in and out of being properly functional – I get that tested with my lithium levels too.
I'm a terrible person for looking after myself and I've regularly been over-sweaty. In summer it can take me more than 24 hours to recover from strenuous exercise in the heat, because of the lithium.
This is an interesting post! Even though many/most of us here take a huge variety of meds for a variety of reasons, I’m willing to bet we have the shared experience of compensating for side effects. You and I certainly do, yet my disability is physical.
Flexeril makes me sun and heat sensitive, and combined with the dehydrating effect of Topamax, is probably a bit dangerous. One of the best purchases I have ever made was a Coleman collapsible cup. I keep it in my purse for when I find myself without water. We go the museums in DC often, and water costs a fortune there. I fill my little cup at water fountains. Good for taking pills, too.
A friend of mine is on Lithium, but I never connected his shaking hands to the med. He frequently either forgot to eat, or got stuck without anywhere to go eat between classes – he’s vegan, and there were very few options near our school. I think I just assumed his shakiness was from that, because it wasn’t to an extreme degree.
Ugh. Flaky head. I thought I was going to scratch my scalp off when my eczema migrated there. Oddly, shampoos free of Sodium Lauryl Sulfate helped quite a bit. I thought for sure it was going to be as hard to deal with as the eczema on my legs. I hadn’t figured out yet how to put Elidel on my head without giving myself a buzz-cut.
This is a great description of lithium.
I love lithium, well, Lithobid since I can’t take the nausea from straight lithium. I would not be here without Lithobid. We’ve been together for 7 years. 🙂
In addition to the other side effects, it also can cause severe acne (cystic/nodular acne) and it can shut down your kidneys in addition to your thyroid. I don’t care. Lithobid plus a low-dose antidepressant keep me sane. They keep me myself.
Thanks for this post.
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I never thought of it this way. Now I am not on any drugs apart from birth control and a PRN benzodiazepine and I don’t have side effects, but I have seen other people with very strong physical side effects from their psych drugs, and yet I never fully realized how this could make someone in fact physically disabled. Now that I read this post, I can think of many instances where I’ve seen physical issues being dismissed or attributed to someone’s mental illness even when it looked to me like they were pretty obvious drug side effects (eg. movement issues from antipsychotics). Of course in some of these cases, even with bad side effects, going off the drug is not an option due to the mental illness, but then now I see the physical disability should certainly be acknowledged.
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Just to say thank you so much for answering so many of my unasked questions. I can’t say I greatly care for being bloated, sweaty and shaky, but it’s so much better than the alternative…
Indeed, thanks for a guided tour of my current favorite element.
Medicine’s physical side-effects can be so disabling: the classic case is cancer treatment, yet it’s an issue folks with most any chronic illness cope with.
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I also got put on lithium after an anti-depressant made me manic, but in my case I don’t understand why they left me on both of them so long.
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Oh, lithium-induced flaky head. I have flaky head syndrome to begin with (some apparently undiagnosable eczema/seborrhea/psoriasis amalgam) but lithium honestly made pretty much all my skin fall off my body, along with a good deal of my hair. I second the above vote for shampoos without laurel/laureth sulfate. I would recommend the one that I use (Giovanni Tea Tree Triple Treat) but you have much longer and prettier and blondier hair than I do so it would probably be too drying. I’m sure there are other options available. Also, Elidel (prescription) was helpful for my eyebrow flakiness when I was on lithium.
I’m on sodium valproate (Depakote) for my bipolar, but I recognise some of these symptoms in myself. They’re threatening to take away my anti-depressant and I’m mostly depressed, I don’t have very many manic or hypomanic phases I’m rather wary.
Thanks for the post – drug side effects can be appalling on their own.
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