A couple of months ago, in the course of replacing many of my articles on mcmanweb, I found myself writing this:
I would emphasize that over the long term, meds need to be regarded as a complement to your recovery strategies, not the other way around.
Whoa We are constantly told that medications are the "foundation" to bipolar treatment and that all the other stuff (such as sticking to a strict sleep routine) is complementary. What gives?
For years, here on BipolarConnect and on my website and elsewhere, I have strongly advocated that our meds are only one part of the wellness equation, and often a very small part of that equation. But this is the strongest wording I have ever used. The statement came up in a section of an article on Bipolar I and Mania, "Controlling Mania."
Here is where I am coming from:
Obviously, when we are caught up in a full-blown manic crisis, we are in no position to manage our lives. Hopefully, a treatment team can get to us before disaster strikes. In these situations, meds overkill is both the logical and compassionate response. But later, the situation changes. As our condition stabilizes, our meds take on the new role of relapse-prevention, and for the time being there may be a number of trade-offs we need to make, such as feeling over-sedated and emotionally and cognitively blunted.
But this can’t go on forever. We want our lives back, and the general idea is that as we become more adept in managing our illness (such as being able to spot triggers) the less we need to rely on meds. This is where the trouble starts, as I mention in one of my new articles on mcmanweb, Treating Mania:
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. What you regard as a treatment failure (stable but by no means well), your doctor sees as a treatment success (stable and out of crisis).
The recommended dosing for mania is based on clinical trial results submitted to the FDA. But here’s the catch: Virtually all these trials involve patients in a crisis situation, aimed at achieving a quantifiable result in four weeks on the highest possible dose. These results all have to do with reduction in mania symptoms. No one is worried about "quality of life" in these situations.
The rare studies we have involving long-term maintenance (typically over 12 or 18) months involve such high drop-out rates (in the 80 percent range) as to be meaningless in all but one sense: Obviously, no sane person is willing to put up with meds that make them feel like fat stupid zombie eunuchs for the rest of their lives.
This is a point our doctors seem to miss entirely. In a 2003 study by Pope and Scott, psychiatrists thought that bipolar patients went off their meds because they “miss their highs.” The patients who quit cited other reasons. When I included this result as a PowerPoint slide in a grand rounds I gave in 2008 at a hospital in Princeton, NJ I was greeted with stony cold frozen Kelvin grade silence.
Do you sense a major disconnect? As your input to this series on "Up" has made abundantly clear, our manic highs are vastly over-rated and horribly misunderstood. "Dysphoria" appears to be the rule and "euphoria" the exception. So terrifying and psychically distressing are our manias that just about all of us are willing to do whatever it takes to keep them from returning.
But there is one small catch - eventually, we want our lives back. And the industrial-strength doses that got us out of crisis in the long run are likely to prove counter-productive. But what doctor is brave enough to reduce the dose below the recommendations on the label? Or, for that matter, come up with a more radical strategy?
In a study published in 2005, Melbourne-based researcher Sarah Russell interviewed 100 bipolar patients who had stayed well for the past two years or longer. Most were on meds, but meds-management was seen as minor compared to the lifestyle changes these individuals were willing to make. A year or two later, Dr Russell expanded her study into a small book, "A Lifelong Journey."
In the book, Dr Russell reports on Damien, who is microscopically attuned to early shifts toward depression or mania. He often heads off mania attacks with herbal tea, but has Zyprexa handy, as a standby med, with the permission of his psychiatrist. He used the Zyprexa twice in the past year.
Obviously, I am not recommending we all use Damien as a role model. The purpose of this piece is to provide food for thought. No doubt, you have already done quite a bit of thinking on these issues. If only your doctor were as thoughtful as you.
Your first-hand experiences provide by far the best database on this topic. Please, let’s hear from you. Comments below …
John is an author and advocate for Mental Health. He wrote for HealthCentral as a patient expert for Depression and Bipolar Disorder.