Bipolar Expeditions (27 page)

Lithium is surrounded by ambivalence. For all that some people appreciate how it can lift depression and dampen mania, others resist it more ferociously than any other drug that psychiatrists prescribe. Widespread informal consensus labels lithium the drug that elicits far more “failure to comply” than any other. Partly this is because lithium's side effects—on the liver and thyroid—are well known. But partly it is because people are loath to have the pleasures of a rising mood taken away from them.
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“I'd rather stand in front of a moving train than tell my psychiatrist I am manic, because I know she will make me take more lithium” was a not uncommon sentiment in my fieldwork. Kay Jamison explains that people who are not manic depressive cannot understand why there is such resistance to lithium, which promises you can “be normal”: “But if you have had stars at your feet and the rings of planets through your hands, [and] are used to sleeping only four or five hours a night… it is a very real adjustment to blend into a threepiece-suit schedule, which, while comfortable to many, is new, restrictive, seemingly less productive, and maddeningly less intoxicating.”
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As Jamison writes, manic depression “destroys the basis of rational thought.”
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If lithium restores it, then it is highly significant that some patients who have experienced being “irrational” refuse lithium precisely because it restores rationality, despite the agonies that manic depression can produce. Lithium is seen as a kind of stern schoolmaster, enforcing the rules and stopping the fun. Like a stern schoolmaster, it cannot be escaped without detection. Patients who take lithium under the care of a physician are required to have periodic blood tests that assess the level of lithium in the blood, in part to detect possible toxic effects. If you aren't taking your lithium as prescribed, your physician will know that, without a doubt. No other psychotropic drug can be easily assessed in this way, leaving lithium as the only one patients must take or be found out.

There is another dimension to the reluctance to take lithium that has come into play recently. In my fieldwork, some people insisted that the specificity in the design of recent psychotropic drugs adds to their potency. Marcy continued to explain her aversion to lithium, but added this twist at the end.

Marcy:
One of the reasons they might have given me the Depakote was that I
really
reacted to the lithium thing, like “I am not taking that, lithium is poison.” I mean, it's one thing to be ingesting a controlled substance; it's another thing to take poison, and to me lithium was poison because I knew that a high enough dose of it would definitely kill me. Even now, I will never take lithium. Even though I understand that based on the dosage it might actually be safer than taking Depakote, I still would prefer the Depakote. I associate very negative things with lithium and I for some reason can't handle the idea.

Emily Martin:
Does the fact that Depakote is a new drug, produced by new technology, make it more powerful in the way you think about it?

Marcy:
It's not more powerful, but taking it has less stigma.

Emily Martin:
Less stigma?

Marcy:
Yes, less stigma and also more of this, like, specificity. It's more specific. It's tailor-made for me and my disorder, it's tailormade for me and my disease
and only for me and my disease
and using my drug to treat some other thing takes away from—once again—the magical specificity property that it's going to uniquely help me.

Specificity was a trait many people valued in their drugs, a trait that they thought enabled the drug to produce one but not another particular mental capacity or state.
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At a support group meeting, Nicole, a petite, fortyish woman, said that she was off for the summer from her job as a guidance counselor for the public schools. Her doctor had her taking drugs five times a day. She had the bottles all lined up on the counter with her pillbox and it was quite something to get it all straight. Because of her continuing depression, the doctor had added an additional dose of antidepressant, Effexor, at 4:00. The last drug she takes before bed is another antidepressant, Seroquel: “I like the last dose of the day best of all, that is the Seroquel. I like the calm, drowsy feeling it gives me, and I sleep very, very well. But now I am having trouble making decisions. Before I never had this problem—like at restaurants I would always know what I wanted to eat. But now I am thinking I need some pill added to help with my decision making.” Seroquel does a good job making her calm and drowsy before sleep, so it makes sense that there might be another drug to help her make decisions.

Larry, a young, nattily dressed man with a gentle southern accent, told another group that he had gone back on lithium and was “going up.” “You know, now that I am taking lithium again, I am going up. Tegretol sent me down, you know.” John, the group facilitator, asked if he was worried about getting too high and manic. Larry said, “I have Risperdal to take if that happens.” John agreed: “If you feel mania, or have racing thoughts, you just pop a Risperdal and it brings you right down.”

The Web is another place to see how people describe the qualities of drugs, and on the Web there is no disapproval, as there is in support groups, of discussing specific drugs and dosages. Postings on Web newsgroups for bipolar disorder make it immediately apparent how many people are taking complex bundles, “cocktails,” of drugs that they try to adjust to ease new symptoms, side effects, or drug interactions. Here are some extracts from newsgroup postings:

On side effects:

Well, after getting sun blisters on Trileptal and double vision as well, my doctor and I have decided to try Topamax once a day to start and a Klonopin at night. I was on Seroquel for sleep but since I had no paranoia or hallucinations, it really wasn't necessary and Klonopin can act as a secondary mood stabilizer anyway. Wish me luck all, this is my 5th cocktail, hopefully it will work. My mind is racing so much and I am so angry, I feel like I'm losing it all.
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On recalcitrant symptoms:

I'm new, here's an intro.

I have been diagnosed with bipolar for about 3 years now, before that they were just diagnosing me with mood disorder, chronic depression, anxiety, and personality disorder.

My current meds are:

Wellbutrin SR = 300 mg daily

Lorazepam = .5 2× daily

Topamax = 200 mg daily (just reduced from 400 mg daily)

Depakote = 250 mg AM Depakote ER = 1000 mg PM

Lithium = 600 mg daily

We're currently playing with my meds again trying to get me stable once more, I'm a rapid cycler, and had a pretty quick cycle into high and then dropped out to a long lasting low that caused some problems.
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On side effects and recalcitrant symptoms:

From: selene

Subject: cocktail hour
dearest armchair psychopharmacologists, < i mean that as a compliment > can anyone make any recommendations for my new drug blend? i'm going in to see my pdoc. tomorrow and want to have an idea of what i'd like to try next. of course, i'll listen to her recommendation first… but i know we dedicate a lot of time to research around here, and consequently i value such well-read, if unofficial, input! i'm thinking about Neurontin and Effexor … here's my chemical resume: started Tegretol (400 mg/day) 3 weeks ago; got unusual red spots on my skin 2 weeks in, discontinued use as instructed by my doctor. also started Wellbutrin at that time—a tiny dose, only 75 mg per day. when i stopped the Tegretol, i continued on with the Wellbutrin. i have not lapsed into hypomania, and am, in fact, quite classically depressed. this is manifesting in a very physical way, more than usual—i feel ok emotionally, but have no motivation to leave the house, tidy up the place, or to do anything but the barest essentials with my time. i feel fuzzy in that i don't even know where to start, i felt much, much clearer before the Wellbutrin—i've been dulled! i have therefore stopped the Wellbutrin. if it seems as though i didn't give the Wellbutrin a fair chance, please note that i took it several years ago, with little/no result. past drugs i've given a fair chance and that haven't worked: lithium, Prozac, Norpramin, Depakote (had a reaction). but i suppose i can't be too choosy, since there's only Neurontin and Lamictal left.
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Much in these narratives resonated with my own experiences. At the time, I was taking lithium, Focalin (a form of methylphenidate, the active ingredient of Ritalin, prescribed for ADHD), and Lexapro, an SSRI. Because of my complaints about the side effects of Lexapro—emotional numbness and loss of libido—my psychiatrist convinced me to try Lamictal, an antiseizure drug that doctors had begun to use for manic depression. Depending on how I did on Lamictal, I might be able to get off the Lexapro. Graduating from lithium, Focalin, and an SSRI to lithium, Focalin, and Lamictal frightened me badly. My own prejudices were revealed: I was scared of sharing a medication with people suffering from even more stigmatized conditions than mine—epilepsy, brain damage—and I was scared of the side effects. My doctor told me with some urgency that if I broke out with a rash I should stop the medication and immediately call her. On the CVS pharmacy information sheet, I read: “Rarely, serious (sometimes fatal) skin rashes have occurred while using this medication. These rashes (e.g., Stevens-Johnson [SJ] syndrome) are more common in children … even after stopping this medication, it is still possible for the rash to cause permanent or life-threatening scarring along with other problems.” To me this seemed a bit more dire than a “rash.” On the Web I discovered that there is a foundation for SJ syndrome, and I learned (and saw horrifying pictures of) what it entails.

Painful blistering of the skin and mucous membrane involvement.
In many cases preceded with flu-like symptoms and high fever.
As it evolves the skin literally sloughs off.

Ocular involvement includes severe conjunctivitis, iritis, palpebral edema, conjunctival and corneal blisters and erosions, and corneal perforation.

In a way I was glad I didn't know what some of these things were. Wanting to be free of Lexapro, and aware that I was fortunate to have superb medical care—a caring psychiatrist, an insurance plan, and Internet access—I began taking Lamictal. Its effects were miraculous.

Some months into taking it, I credited the drug with an immense easing of symptoms of depression, anxiety, and obsessiveness, without the emotional flattening of the SSRI. That left me with just the fear of side effects, and the fact that every few weeks a strange lesion opened up on my face and bled. I was assured this was not “the rash,” but no one knew what it was. The lesions embodied ambiguity: were they the result of Lamictal, my fevered imagination, or something else? In any case, I was disconcerted at having escaped one set of side effects only to struggle with another.

In my fieldwork, the strategy of combining drugs into cocktails in pursuit of fewer side effects and fewer symptoms was a commonplace topic during informal discussions among doctors. I did not have access to ongoing clinical sessions where doctors discussed and adjusted medications with patients. Although it was less than ideal for the purpose, I was able to get some hints about the ways physicians talk about managing patients on drugs through Web forums set up (by pharmaceutical companies) for doctors to raise questions about medicating their patients.
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The pharmaceutical company that produces the drug sponsors the Web forum and it is usually company sales reps who give out passwords to doctors they hope will prescribe the drug. This is one way companies hope to foster off-label uses of their drug. One site to which I gained access through a generous person in a publications company (a pharmaceutical corporation had subcontracted the maintenance of the Web site to this company) showed me the extent to which postings from doctors were concerned about the intricate details of particular patients' overall health, the appropriateness of particular drugs, and how to meet patients' needs through elaborate combinations of drugs. For reasons of confidentiality, I call the drug that is the focus of the Web site “Drug R.”

The selection of postings below illustrates a common theme: patients commonly take a great many medications at once and their doctors write to the forum for advice about how to deal with cascading side effects. This doctor describes a patient experiencing significant thirst: “I'm treating a woman in her 40's for depression and panic disorder. She may have a subtle bipolar illness. She is currently on lithium carbonate 1500 mg a day, Drug R 45 mg a day, Depakote 625 mg a day, Klonopin 0.5 mg TID [three times a day] and Pamelor 50 mg a day. 1/27/00.” Another describes a similarly complex regimen that is still not handling the patient's depression: “Male 37 years old with previous documented sexual abuse as a child, current diagnoses: DID [Disassociative Identity Disorder], ADHD, PTSD [Post-Traumatic Stress Disorder], bipolar II with refractory depression … current meds: lithium 1200 mg, Lamictal 200 mg, Effexor 450 mg, Drug R 45 mg, Cytomel .25 mcg, Ritalin 80 mg.” When the patient recently became hypomanic, the doctor decreased his Effexor, Ritalin, and Drug R, but in three days, he again had the “most malignant depression I have ever treated.” Not all postings received a response, but this one did. The consulting online doctor replied, “With this understandable and heroic combination of meds, what to do? I suggest adding another mood stabilizer (Depakote or an atypical antipsychotic Olanzapine). 5/12/2000.” When drugs are causing problems, the solution is more drugs.

One doctor asks about a patient whose depression Effexor has relieved but who now experiences anxiety, insomnia, and agitation. He wonders about augmenting the Effexor with Drug R. The on-call expert replies that the combination is used more and more often in similar circumstances “with anecdotal success,” but that there are no controlled studies of safety and efficacy. He suggests a conservative starting dosage of Drug R. Another doctor asks for suggestions for ways of counteracting a patient's weight gain and sexual dysfunction while on SSRIs as well as Effexor and Drug R. He has tried augmenting with Wellbutrin and Buspar, but seeks additional advice. The expert suggests a number of options: switch to a low sexual dysfunction, weightneutral antidepressant (Wellbutrin or Serzone); try adding Viagra; try Gingko, even though there are no controlled data; try dose reduction, though you may lose therapeutic benefits; prevent the weight gain through diet and exercise, though this is easier said than done; add weight loss agents, such as Orlistat, though there are no controlled studies and it may block the absorption of the antidepressant; try weight loss agent Topamax, though it has a high incidence of CNS (central nervous system) side effects.