Seeking relief, yet finding despair

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[sSRI-Research] Seeking relief, yet finding despair

 

 

 

 

St. Petersburg Times, Sat, 10 Dec 2005 10:17 PM PST

 

 

http://www.sptimes.com/2005/12/11/Floridian/Seeking_relief__yet_f.shtml

 

 

Seeking relief, yet finding despair

 

 

 

One drug was meant to give relief from respiratory trouble, but

soon a whole new kind of trouble grabbed hold and nearly pulled her under.

 

By ALISA ULFERTS, Times Staff Writer

Published December 11, 2005

 

On April 2, 2004, I lit up my first cigarette in seven years. I

considered its glowing tip for a moment, then pressed it into my inner

arm. I took it away and pressed again. When I was done, a series of

concentric burns blistered black on a surface that stays white even in

summer.

 

I felt only the slightest needle prick with each circle. The smoke

that drifted off my skin resembled the fog that had settled over me

weeks before, anesthetizing me against pain. The next morning I was

surprised to wake with seven weeping sores in the crook of my arm.

 

After several nights of this, I found that burning myself, while

sickly satisfying, was not enough. A fallen martini glass provided

inspiration. I palmed one of the larger glass fragments and traced it

along my hip, raising seams of blood.

 

After that, it was Tylenol PM. First one pill, then two, then three

and four throughout the night. Even with the pills, I slept only four

or five hours. During the day I was wired and only vaguely aware that

my speech had increased in volume and speed.

 

This lasted for weeks, until the energy finally crested and crashed,

leaving me unable to leave my bed. I wondered if someone would find me

and take me someplace where I could feel safe and protected against

myself.

 

I knew something was wrong - but I couldn't have guessed the

prescription steroids I was taking to help me breathe were to blame.

 

* * *

 

I knew nothing of a link between steroids, depression and mania, nor

the nexus where the two extremes meet as bipolar, when my doctors

diagnosed me with severe mood disorder in June 2004. They prescribed

antidepressants and anti-epilepsy drugs, which are used off-label for

bipolar depression, but they weren't satisfied with my response. My

psychiatrist increased my dosage. Still my moods fluctuated wildly

between despair and rage, resting occasionally for a few hours' time

in between.

 

It wasn't until a few weeks after I stopped taking the steroids, which

I'd been prescribed in February for chronic lung infections, that I

began to improve. I stopped taking them, not because I suspected their

role in my psychiatric problems, but because all the drugs I was

taking, even with insurance, were costing me hundreds of dollars a

month. My lungs had improved, and I figured I could do without.

 

About a month after I quit the steroids I watched, stunned, as veteran

newscaster Jane Pauley described in a television interview how

steroids she took to combat chronic hives triggered her first

full-blown episode of bipolar depression. She described symptoms that

matched my own.

 

The next day, I called my doctors and asked if my steroid use was the

cause of my symptoms. The answer - after a week of research and

consultation - was heartbreakingly simple: Yes.

 

Part of the research/consultation my doctors did when they were trying

to decide if steroids caused my symptoms was to ask me if I had a

history of mental illness (no) and whether there was a history of

mental illness in my family (also no). The absence of such a history,

combined with the levels of steroids I was taking, led them to

conclude that the drugs had caused my symptoms.

 

Pauley's was the first in a series of revelations last year about the

unintended and dangerous side effects of certain drugs, most notably

arthritis drugs. Certain antidepressants, we also learned, could

increase adolescents' suicide risk. Other prescription painkillers

came under fire for stroke risk, as did some nonprescription drugs.

 

The rash of previously undisclosed side effects of commonly prescribed

drugs led to accusations that the Federal Drug Administration does too

little to ensure the safety of drugs after they reach market - and too

little to inform consumers about drug risks.

 

" Consumers tend to believe that advertised drugs are safer and more

effective than they are in reality, " Public Citizen, a consumer

watchdog group, recently wrote to the FDA, " and advertisements give

little real information about the health conditions requiring treatment. "

 

* * *

 

In February 2004, about two months before I held that first cigarette

tip to my skin, I couldn't walk up a single flight of stairs. A

four-month struggle with chronic respiratory infections had cost me

half of my peak lung capacity. Diagnosis: an unusual form of asthma.

 

My doctor prescribed prednisone, a common corticosteroid (as opposed

to body-building, anabolic steroids). Prednisone, I later learned, is

the steroid most commonly associated with psychiatric side effects. He

also prescribed fluticasone propionate, a potent inhaled steroid, to

help me rebuild lung capacity.

 

One drug turned out to be the fuse and the other was the match. I felt

crushed, weighted, as if someone had turned up the volume on gravity.

Shower? Not today, I can't deal. Eat? No, thanks - chewing is too

hard. Wash dishes? The stack has attracted a halo of tiny flies, but

who cares? Watch television? Read? I just want to sleep.

 

If our sense of self is anchored in the memories we hold at any given

moment, then I became a collage of past childhood trauma (my

17-year-old brother's death when I was 6), my father's Parkinson's

disease, my mother's grief and my own sudden withdrawal. Memories of

time with friends, reunions, Christmases and other holidays spent

laughing with family, which would have injected perspective into my

experience, had receded out of reach. That's the nature of depression:

It robs the mind of the things we live for. The sufferer knows nothing

but the immediacy of her pain and can't remember how it felt to be

without it. She doesn't feel her descent; she can't comprehend the danger.

 

My pain, a psychic pain so palpable it spread outward from my chest

through my limbs and settled in my joints, wrenched everything out of

me but the desire to make it stop. And if I couldn't get it to stop,

then I wanted enough physical pain to drown it out.

 

On my way home from work each day, I white-knuckled the wheel in my

fight not to drive the car into a tree.

 

At night I often felt wired and unable to sit still. I paced the

floors sometimes until 1 or 2 in the morning. When I couldn't bear to

be inside any longer, alone with myself, I walked up and down the

block outside while I waited for morning.

 

By June, when I got back from a writing seminar in Vermont, I'd

stopped eating. I couldn't care for myself, so I stayed with a friend

for a week, staring at the wall and rocking back and forth, while she

called in sick to work for me.

 

When she had to leave town for a day, I cowered on her couch,

convinced that a strange man was in the house. I searched every room,

every closet and the basement, only to see him slip away out of the

corner of my eye. Sometime during that night - it must have been about

3 a.m. - he materialized in front of me. He leaned against the bricked

wall and studied me as carefully as I studied him. I'd never seen him

before - I didn't know from which motley of acquaintances my mind had

drawn this composite - and yet he seemed faintly and sinisterly familiar.

 

I felt as though I were awake during a nightmare; the dwindling part

of my mind still in touch with reality told me he wasn't real, but it

was overpowered by this new, alien presence in my mind that whispered

to me that he wanted to cut me with his knife. I didn't move until

daylight broke and he disappeared.

 

Later that morning, my doctor suggested hospitalization in the

psychiatric ward. I refused. So he doubled the dosage on my meds and

warned me to watch for unusual reactions. As can happen in people with

underlying mood instability, the increased dosage - which included an

antidepressant - soon launched me into a " mixed episode, " a double

helix of manic and depressive symptoms experienced at the same time.

 

In my case, the mania took the form of irrational, uncontrollable

rage. On a visit home a week later, I began screaming at my mother

after a minor argument and threw a glass jar at her. It missed her by

inches and shattered on the floor. A piece of glass bounced off the

floor and hit my nephew, cutting his leg. He bent over and started to

cry. My sister led him away to the bathroom; a trail of blood drops on

the floor marked their path. My brother held me down on the floor and

wrestled my car keys out of my hands when I declared I was driving

back to Florida. I swallowed Xanax until I passed out on the bed. I

woke up briefly a few hours later to throw up.

 

* * *

 

Psychiatric side effects have been observed in some patients on

steroids ever since the drugs became widely available in the 1950s.

Although I'd never heard of the link between steroids and emotional

and mental disturbances before, it was no secret to the FDA. I combed

through the agency's records of adverse patient reactions and was

horrified to see hundreds of incidents of psychiatric reactions in

patients who were taking the same prescriptions I was.

 

Who is at risk for steroid-induced psychosis, depression, mania and

bipolar disorder? Some scientists theorize that people genetically

predisposed to mood disorders may top the list, but psychiatric side

effects have also been observed in people with no personal or family

history of mood disorder.

 

Why does it happen? The link between environmental stress, cortisol

(the body's natural stress hormone) and the synthetic stress hormone

found in corticosteroids may hold the answer. Environmental stress has

long been known to be a trigger for episodes of mental illness, and

some scientists theorize that the synthetic stress agent found in

steroids may overwhelm the brain's ability to neutralize cortisol.

Brain autopsies of people with severe depression have shown damage

from high levels of cortisol, and one group of scientists from the

University College of London Hospital say steroids may cause a

" cascade effect " in which an initial dose damages part of the brain

that regulates mood and emotion. That damage then would make the brain

vulnerable to future " insults " brought on by steroids, according to

the London study.

 

" How reversible this damage is, " the study authors wrote in January

2005, " is not yet clear ... "

 

* * *

 

It certainly isn't clear for me. No one can say whether I'll have

problems in the future with depression or mania, even if I avoid

steroids. I recently tried, more than a year after the worst of my

experience, to wean myself off my psychiatric drugs. I did well for a

couple of weeks, presumably while the drugs slowly leached out of my

system, but soon found myself unable to cope even with the simplest

stressors of everyday life. Laundry and dishes piled up while I slept

first nine, then 10, then 11 hours a day. Anxiety sent adrenaline

racing through my body, which only exacerbated the exhaustion.

Mornings were the worst, and I often found myself crying before my

head left the pillow, for no reason that I could discern. So I resumed

my dosage, and after about two weeks felt my energy and spirit return.

The damage to my brain, it seems, has not reversed itself yet, if it

ever will.

 

Assuming it doesn't, and that the statistics that govern people with

major depression or bipolar disorder apply to me, I will have to

remain vigilant for the rest of my life. I have a 50 percent chance of

having a second major bout of depression and mania. If I have a

second, there is a 75 percent chance I'll have a third. A third

episode gives me a 90 percent chance of having a fourth.

 

As alarming as those numbers are, the ones that follow scare me more:

There is a 50 percent chance that I will attempt suicide sometime in

my life. There is a 15 percent chance I'll succeed.

 

Like anybody else with a serious, chronic illness, I've struggled with

my identity since receiving my diagnosis. No longer can I stoke my ego

by piling on Herculean amounts of work and pressure as I used to do. I

am invincible no more. In fact, when it comes to my ability to manage

stress, I now am weaker than many.

 

And whereas a person with, say, cancer can incorporate " survivor " into

her sense of self, her cancer doesn't raise questions about the rest

of her personality. She is not kind, strong, generous, gregarious,

dark or introverted because she has cancer. But I must wonder where I

and my disease - and its pharmaceutical treatment - begin and end.

 

Depression has changed how I view myself and how, I presume, others

view me. Mental illness still carries a stigma. I like to think I have

more compassion for the mentally ill and the prejudices they - we -

endure, though I acknowledge the hypocrisy of the lengths I go to

point out that the origins of my illness are a result of my steroid

treatment.

 

When friends and co-workers who read this ask how I am doing, I will

hasten to assure them that I am once again stable, thanks to the drugs

I've been taking to keep me well.

 

But even that's not without cost. Some patients, it turns out, become

physically addicted to the drugs. These patients may never be rid of

debilitating " brain shivers, " a phenomenon I experienced when I missed

a dose. (What's a brain shiver? Shake your head back and forth really

fast for a few seconds, then stop and stick your tongue on a live

battery. Do this while watching a DVD on fast-forward.)

 

Chronic brain shivers are, in the language of the drug manufacturer,

" withdrawal syndrome. " To guard against this, my doctors say they will

phase me very slowly off the drug when we are ready to switch to

another. I also am downing vast amounts of flax seed and fish oil,

which have been shown by some health professionals to regulate mood.

 

And, I hate to admit, I still smoke. Cigarettes are the only drug I've

had in the last year whose side effects, while harmful, are at least

well known.

 

- Times researcher Caryn Baird contributed to this report.

 

- Alisa Ulferts is a Times staff writer on sabbatical for graduate

studies. She can be reached at aulferts

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