Sunday, April 15, 2007

Feeling Grateful (Part 2)

As you'll remember from my earlier post, the purpose of my trip to Berkeley and to Davis, California, was to support my son who was viewing college campuses. (In a few days, I'll begin a series on "triggering events," which will provide a different look at all this.)

Although my husband, son, and I had a wonderful four-day trip, and that is truly something to be grateful for, I was concerned about my ability to express true happiness. About a year ago, I realized that even when I was happy, I felt a certain level of sadness. It's difficult to explain but the underlying problems were anger, grief, and loss.

During the years of my medication merry-go-round,when I was taking so many drugs that didn't work, caused such horrific side effects, and made me sick almost every day, I never "blamed anyone" because I accepted my doctors' explanation that I was medication resistant and thus one of the most difficult cases to treat.

In 2003, I learned that all of this was a lie. The real problem was that bipolar depression had been largely ignored. Psychiatrists were prescribing medications for which few studies had been conducted. In fact, the first full scale clinical study of the efficacy of medication, the Systematic Treatment Enhancement Program for Bipolar Disorder, STEP-BD, didn't begin until 1998 and concluded in 2005.

What that meant to me was that from 1993 to 2003, I'd been taking medication that had barely been tested. This was confirmed by the American Psychiatric Association 2003 Practice Guideline for the Treatment of Patients with Bipolar Disorder," in the section on "Somatic Treatments of Acute Depressive Episodes." (Although I can't find the report online any more, I will write about its findings tomorrow.)

Once I realized that I had been a guinea pig for a decade, I felt I'd been sucker-punched. I realized that I was sick because I never had a chance to be well. I was taking medication that no one had tested because they'd been concentrating on the manic side of this illness rather than the depressive side. Somehow, they "didn't realize" that most of the suicides occur during depression rather than mania, that more people relapse into depression than into mania, and that depression is responsible for a higher level of disability.

How could I have spent ten years researching this illness without understanding how little was being done by the psychiatric profession? I wondered.

I wished I'd never begun taking medication and that I hadn't bought into the whole story that "responsible people need to be compliant." And I was outraged at the psychiatric establishment in the United States for pretending they knew what they were doing when they clearly didn't.

While my illness had saddened me, this information enraged me. I felt such an overwhelming sense of loss and grief that I didn't know what to do with my feelings. I wanted someone to care that my treatment for bipolar depression was worse than the illness itself. I wanted them to publicly admit they were prescribing drugs without any idea of their short-term or long-term effect. I wanted them to apologize to my son.

It was bad enough that I had been sick, but none of us are sick in a vacuum. This illness has had a huge impact on my son. It wasn't diagnosed until after he was born. I began taking medication when he was four years old and continued until he was fourteen.

Over the years, I can't even begin to tell you how guilty I've felt about its impact on him. The day-to-day stuff was bad enough, even though I tried--with all my strength--to mitigate it. Yet, each time we had to cancel a family vacation, or change plans, or send him to an extra session of computer camp (because I used to feel terrible during August), I was devastated.

In 2003, once I began seeing a doctor of integrative medicine and started feeling better again--for much longer periods of time--a part of me couldn't seem to resolve my feelings of loss. Now that I believed that there had been no real reason for all my suffering, my grief was overwhelming. Writing about it wasn't enough. I felt like I wanted to go to the Wailing Wall in Israel, pound my chest, and cry aloud--preferably for months. I wanted to hike up to the Hollywood sign (I live in Los Angeles) and shout, "The treatment for bipolar depression is worse than the illness." (Yes, I realize that would have been "mentally ill" behavior.) I wanted to write a letter of condemnation to someone in Washington D.C. but I didn't know who to write to.

Finally, a few months ago, I decided I had to let go of my anger. At best, it was non-productive. At worst, it made me sick. I realized that I've got six months left until my son leaves for college. While there is no way to make up for what he's lost, there is no value in continuing to dwell on "loss and grief" rather than happiness and joy.

[to be continued]

4 comments:

marja said...

Are you not taking any medication at all now?

My experience has been different. Although I had a misdiagnosis of schizophrenia (psychosis being a big part of my problem), I was given antipsychotics which I still need to take. What I missed out on at the time was the mood stabilizers that I take now. I could not survive without medication. Sometimes I also need an antidepressant.

Syd said...

Susan,

Another compelling post. Having been completely dismissed, misdiagnosed, incorrectly medicated and overmedicated for years, I understand and share your anger at your mistreatment by the medical community. I found it interesting that you sought help from an integrative practitioner. The best care I've received through the years has been from 2 different integrative practioners (a doctor and then a nurse-practicioner). Have you found that experience to help with your BP? I share Marja's question about meds now.

Bipolar Writer said...

Marja and Syd,
I realize that most people who are bipolar need to be on mood stabilizers. And undoubtedly, if any of them had worked for me, I'd be on one. But they didn't work and we not only tried Lithium, Tegretol, Depakote, and Lamictal but a slew of others. We tried everything multiple times, in different dosages, and in different combinations.

What angers me most about mood stabilizers is the lack of research, the fact that so little funding has gone to develop new ones, and that most of what we're offered is medication that has been developed for other illnesses but is tried on us.

I will write more about my experience with medication in future posts. Actually, that's what I write most about in my new book and I'm not allowed to repeat the info but I'll try to write about it in a different way. The bottom line--for me--was that the mood stabilizers didn't work.

The only antidepessant that worked was Zoloft. Unfortunately, the psychiatrist who diagnosed my illness, gave it to me without a mood stabilizer. At the time--this was before everyone had Internet access--I didn't realize this was a terrible mistake. Finally, the Zoloft pushed me into a full-fledged mania (my one and only), and then we began trying mood stabilizers--which were totally ineffective.

Eventually, the Zoloft pooped out.
I've tried a host of different antidepresants but none of them helped at all.

What saved my life, oddly enough, was Adderall. It's a stimulant and is usually not prescribed for bipolar depression because it can easily cause manias. But I use it with great caution. I only take it during depressions and take the lowest possible dosage. The moment I feel the depression ending, I get off it immediately because it can cause a hypomania.

The reason it was life-saving was that it ended a horrific nine-month depression in one day.

Unfortunately, it's not a good long-term strategy for dealing with this illness but because I am medication resistant (and nothing else works), it's the best I could do.

That's also why I went to a doctor of integrative medicine. Syd, this is truly a long story but the bottom line was that she provided something that no one else was offering, which is hope.

However, like everyone else, once a depression hit, she was ineffective.

Perhaps I should say in a post that I'm not anti-medication. What continues to astound me is that it's prescribed without a lot of thought. People who come from the manic side of this illness are treated the same way as people who come from the depressive side.

Doctors seem to believe that "more" is better. For someone like me, who never took anything before this illness,a small dosage can work.

While some people need antipsychotics, others don't.

While I realize that unlike diabetes, a blood test can't show how much of a certain drug you need, or which drug will work for you, the reality is that psychiatrists have been prescribing medication forever without any major tests before the STEP-BD.

If 50 percent of diabetics attempted suicide and 20 percent killed themselves, there would be an international uproar. Yet, that's the case with bipolar disorder and the silence is deafening!

luckymud said...

Hi Susan, thanks for an interesting read - both your post and your comment! I'm now intrigued by integrative medicine. Syd, maybe you could speak to this too. What does it involve? How do you find an integrative practitioner? (I'm in Canada - does that change things?)