You want your life back. Your doctor wants to keep you out of the hospital.
Bipolar meds treatment. Treating mania in its initial phase is like striking out the pitcher in baseball. Anyone can do it. All you have to do, if you are a doctor, is administer way too much of any knock-out pill intended for an elephant or other large mammal and congratulate yourself for living up to the potential your mother saw in you.
But then what?
Psychiatrists do their residencies in psychiatric units where patients are brought in (often by the police) in a state of crisis. If it's mania, we are bouncing off of walls and ceilings, a danger to ourselves and others. It is a frightening state - of us at our worst - and it is generally a budding psychiatrist's first (and most lasting) impression of an individual who lives with bipolar. A compassionate and caring physician, quite naturally, never wants to see us in this wretched condition again. That's where the trouble begins.
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Bipolar Meds - A Time and a Place
Meds overkill is the logical - and indeed compassionate - response to a manic individual in a state of crisis. In the bad old days, someone unfortunate enough to flip out - unless he or she came from a rich family - was chained to a wall in a dank freezing cell, put on a starvation diet, and forgotten about until it was time for burial in an unmarked grave, which wouldn't have taken too long.
In this state of crisis, a clinician hardly has to worry about whether the med will interfere with the patient's ability to drive or have sex or stay thin. The only object of treatment at this stage is to safely bring the patient back to earth. Once back to earth, the doctor will ease up on the doses, but in this era of mangled care, the patient tends to be prematurely sent out the door, over-medicated and disoriented, unlikely to find a doctor brave enough to lower his or her doses.
Here's the rub: The recommended dosing you find on the labels of drugs used to treat mania - the ones that doctors follow to the letter - are based on clinical trials of patients in mania - that is patients in a state of crisis. These trials typically last four weeks.
Bipolar Meds - Out of Time, Out of Place
But your situation has changed. You are stable, no longer in a state of crisis. You are looking ahead - to the whole rest of your life - to returning to your normal life. Your doctor, on the other hand, is looking back - from the days or weeks that you emerged from crisis - at preventing another hospitalization. Already, there is a major disconnect between you and your doctor. In every field of endeavor, including this one, this portends disaster.
Clinical trials convincingly demonstrate that anti-manic agents are good at bringing patients out of mania. Where the evidence is far more tentative is in showing whether they are good at keeping patients out of mania or whether the side effects justify the result.
Long-term studies for name-brand drugs typically last 12 to 18 months and are aimed at merely showing delays to relapse (which may be sufficient to warrant an FDA maintenance indication) rather than actually preventing relapse. The major conclusion to draw from these studies is the high drop-out rates (eight in ten patients from one long-term Zyprexa study), indicating that even the best med in the world is useless if patients can't put up with the side effects.
This doesn't mean you should take yourself off of your meds. But it is your right to insist on a dose you can tolerate, even if the levels are significantly lower than what the labeling recommends. "Go lightly on the lithium," I recall Ross Baldessarini of Harvard advising a panel of journalists at the 2005 International Conference on Bipolar Disorder. Lithium (which is not a name-brand drug) is one of the few bipolar meds that has been extensively studied for long-term use and a lot of the credit goes to Dr Baldessarini, who, with colleague Leonardo Tondo, has found that relapse is likely if lithium is abruptly discontinued.
Over the years, recommended lithium dosing has dropped substantially, but psychiatry, Dr Baldessarini contends, is still heavy-handed. Unprompted, he referred to American psychiatrists as "cowboys" and in response to my follow-up question acknowledged that "patients don't want their wings clipped."
This is a point psychiatrists seem to miss entirely. A 2003 study by Pope and Scott pointed to a clear disconnect between psychiatrists and patients. The psychiatrists in the study thought that bipolar patients went off their meds because they "miss their highs." The patients who quit cited other reasons. In 2006, I heard Dr Scott talk about her study at the International Society of Bipolar Disorder conference in Edinburgh. When I included it as a PowerPoint slide in a grand rounds I gave two years later to clinicians at a hospital in Princeton, NJ I was greeted with stony cold frozen Kelvin grade silence.
Bipolar Meds - Finding a Middle Way
Keep in mind that full-blown manias tend to be rare events, non-existent in people with bipolar II and nowhere near as prevalent as depression in bipolar I. Manias are often precipitated by outside events, such as lack of sleep and working long hours. In a 2005 interview, John Gartner, author of "The Hypomanic Edge," told me that psychiatrists need to consider how many episodes the person has had, how prone they are to episodes, how long ago the prior episode was, and so on.
Medication decisions based on rational assessments of risk vs reward rather than fear would bring psychiatry into alignment with the rest of medicine. Trust me, the fear factor looms large when psychiatrists reach for their prescription pads. They don't want to see us back in the hospital, remember? The irony is that, in this scenario, rehospitalization is almost inevitable.
Overmedicated patients labor under burdensome side effects, often from one or more meds administered at full strength. The side effects can be horrific in their own right, but what may be worse is these effects militate against the patient gaining the upper hand over his or her illness. Individuals who feel like fat stupid zombie eunuchs are hardly motivated to get into the kinds of healthy routines that encourage recovery.
Both the 2002 and 2009 Bipolar Treatment Guideline put out by the American Psychiatric Association stress the goal of a return to remission, which they define as symptom-free AND a return to functionality. But this message has yet to filter down to the rank and file. They have the symptom-free part down pat. (Technically, an over-sedated patient is symptom-free, and a clinical trial will chalk up this type of result as a success.) The functionality part (which would include making sure no side effects are holding you back) only makes their jobs a lot harder, and they're not getting paid for that.
So, here's the patient, feeling his life slipping away, who, thanks to his doctor, is reduced to making an all-or-nothing decision. The patient goes off his meds, and - of course - lands in the hospital (usually after a brief and shining moment of feeling gloriously normal). See? says the doctor. I told you so.
I see the same individuals our doctors do, only I'm interpreting what I see a lot differently. I see too many patients living miserable half lives - stuck - unable to return to their old lives. I see failure. The doctors see these very same people as out of crisis and stable. They see success.
Bipolar Meds Treatment - Here's the Situation
You are on the 50 yard line, playing offense, trying to gain yardage, aiming for the end zone. Your doctor has you on the same 50 yard line, playing defense, trying to keep you from losing yardage, from winding up back in your own end zone. What your doctor sees as a win is a clear no-win for you.
An aggressive offense is often the best defense, but there are no guarantees, considerable risk is involved, and you need to be willing to put in the work. Let's get personal ...
Bipolar Meds Treatment - A Personal Perspective
My interest in the whole matter is more than academic. Although it is clear that my bipolar manifested in college, it wasn't till I was age 49 that I sought help. I was misdiagnosed with unipolar depression and prescribed an antidepressant which had me bouncing off the walls. Of all things, florid mania proved to be much safer than the suicidal depression I had been in. Ironically, bad psychiatry may have saved my life.
But that same psychiatrist also did something right, for which I am eternally grateful. The second time out, he put me on a low dose mood stabilizer (initially with an antidepressant). He didn't overmedicate me or turn me into a zombie. Yes, my thinking was slightly slowed down and my emotions were a bit blunted, but my brain had been running too hard and too fast and too unreliably, even in neutral. Slightly slow and blunted was good. Soon, I was on my way to a new career in mental health journalism.
Years later, purely by accident, I went to a half dose, ironically when the psychiatrist I was seeing at the time wanted to double it. That doctor, with no inquiry into how I was actually managing my life, simply saw that my dose was about one half of what his patients were receiving. With each successive visit (thankfully three months apart), his hints grew stronger and darker. Always, he framed his hints in terms of "him" putting me on a higher dose, as if my actual situation had nothing to do with it.
Depression was far and away my main issue, not mania. But my doctor showed little concern about how I was faring with this side of my illness.
Then, my health coverage ended, and I requested a switch to a cheaper generic version of the same mood stabilizer. This meant keeping track of four pills a day, which proved impossible. It wasn't long before the rest of my thinking came back on line, along with the rest of my emotions. Trust me, it felt wonderful having all my brain back, but could I manage the extra amplitude?
Over the years, I had picked up a broad range of recovery and coping skills, such as maintaining a strict sleep routine. Looking back, I realized I had only experienced two full-blown manic episodes in my life. The first, back in the eighties, came from a crazy work routine involving very little sleep. The second, years later, was triggered by an antidepressant. Obviously, my chances of mania were remote.
But what about managing the extra amplitude? Would my brain cooperate with me when I needed to focus on my work? Would I have dominion over my emotions when I found myself in a challenging social situation? Would I continue to enjoy my present peace of mind, or would I be spending most of my waking hours in a state of agitation?
I Make My Own Decision
It wasn't an all-or-nothing decision. I could always bump my dose back up, I realized. I could always go back to the more expensive one-a-day pill. So, I made my choice: High dose recovery, low dose med.
I didn't consult my doctor. Or, rather, my doctor never would have consulted me. Here I was, a mental health writer advising fellow patients to forge trusting relationships with their clinicians, going behind my doctor's back. It was clear I would have to fire my current doctor and find a new one. A year later, I booked an appointment with a new doctor. But then my life intervened. Next thing, I was on my way to California, where - eventually - I did find a doctor who actually listened to me.
I will be the first to acknowledge that managing the extra amplitude can be a challenge. Often I have to deal with emotions I don't want to deal with, but that is what "normal" individuals face all the time, as well.
Back when I was on a higher dose, I did not experience the same range of emotions the rest of the world did over the tragedy of 9/11. I needed to cry, if not real tears, then full-strength cathartic psychic ones. Yes, on a higher dose I was comforted by the thought that I could venture out in public without Crazy John showing up. But my daughter quickly picked up on the fact that the delightfully wacky side of my personality - one that played such a central role in the unique bond we had forged over the course her life - was missing.
My wacky side is back, much to the simultaneous delight and consternation of people I deal with. It is a legitimate part of who I am. Meds are not meant to medicate personality out of people, and heaven help if they ever came up with one that did. But earlier in my recovery, my leave of absence from this side of my identity was a very small price to pay to manage an illness I could not have otherwise managed. I consider myself very lucky.
Bipolar Meds Treatment - Real World Observations
Most patients I have witnessed in my years of attending support groups have not been nearly been so lucky. Their mood stabilizer doses are way higher than mine. Plus they are on other high dose meds. These are people in stable condition, but they never got better. Way too often, they got worse.
In his 2010 book, "Anatomy of an Epidemic," Robert Whitaker noticed a similar phenomenon, but he came to a conclusion I never would have considered: It was the meds that were turning these people into the permanently disabled, he claimed, not the natural course of their illness. There was nothing natural to the course of their illness once the meds structurally altered their brains.
According to Whitaker, back in the old days researchers and clinicians noted that illnesses such as bipolar naturally remitted over a relatively short time. Now something different was going on, and we're not just talking about the side effects most of us know all too well.
As a group, we are more depressed, more manic, more psychotic, more anxious, more stupid, and less able to function than we were before. The medications have changed our brains. And the only answer clinicians have to our meds-induced worsening of symptoms is to respond with - drumroll - yet more meds, in yet higher doses.
This is a very bleak picture Whitaker paints. Like all the rest of us, he is speculating, but his speculations are grounded in the same phenomena I have been witnessing at eye level, and which statistics bear out in the most distressing way:
According a 2001 finding from the Stanley Bipolar Network of the outpatients in its participating clinics: More than eight in ten had been hospitalized in the past, on average three times. Half had attempted suicide. A third were currently married, another third single, and the rest were separated, divorced, or widowed. Despite the fact that approximately 90 percent had high school diplomas and a third had completed college, almost 65 percent were unemployed and 40 percent were on welfare or disability.
Data from STEP-BD validates these findings, as does a European survey from the advocacy group GAMIAN.
Wrapping Up Bipolar Meds Treatment
I could have been one of those statistics. I just happened to have stumbled into a meds strategy that worked. But we should not have to stumble. We need smart meds strategies, capable of being tailored to our individual situations, that look to the future, aimed at leading fulfilling lives, that complement our recovery strategies.
Note, I did not say recovery strategies that complement our meds. Unless you are one of the fortunate exceptions, meds will merely get you out of crisis and into stability. Then the heavy lifting shifts to you. As the articles in the Recovery section make abundantly clear, you reorient every minute of your life to gaining the upper hand over your illness. Your meds, at this stage, need to be regarded as an adjunct rather than the cornerstone to your recovery.
Our meds are dumb, but in the hands of a smart clinician they may be recruited in the service of smart. But, in an era of too many dumb clinicians and even dumber health care, we need to be the smart ones.
Be smart. Live well.
Previous article: The Problem with Bipolar Meds
This article completely replaces earlier articles on treating bipolar, Jan 9, 2011
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