Tuesday, January 18, 2011

Treating Mania - Part II

My previous piece (the first half of my new mcman web article) examined the disconnect between us and our doctors. Following on ...

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 ...

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 the point. 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.

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 It Up

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 to mcmanweb 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.

1 comment:

Just Me said...

What an eye opening post! I agree with you completely. My MD finally reduced my meds as I have suffered and am on disability due to bipolar. Currently, I feel better than I have in the past four years. Like you, I had to find a doctor willing to listen to me instead of just constantly increasing my medication. Thanks for sharing this post. It is good to know I am not the only one.