Medication Nation

http://bipolarblast.wordpress.com/

by giannakali (ICSPP Newsletter 2008–Number 3)

Before I went out on disability due to acute psychiatric drug toxicity I was a social worker. I worked first in hospice and HIV and then for many years I worked in mental health with the so-called “severe and persistently mentally ill.” During this time I was on more medication than any client I ever met. My cocktail at its height, when I was driven out of the work force, was 11 mg of Risperdal, 400 mg of Lamictal, 200 mg of Zoloft, 50 mg of Seroquel, 3 mg of Klonopin and at the end I was put on a round of trials with multiple stimulants since I could hardly function on the sedating cocktail I was on. When I had my conversion and figured out, with the help of Peter Breggin that “my drugs were my problem,” I was on 7 medications. I’ve been withdrawing from them for four years now. What follows is an essay I wrote on the symptoms I deal with, mostly directly associated with the process of withdrawal and not really any underlying problem, since basically there was no real substantial underlying problem.

When I was 19 I took LSD and became psychotic and manic. On this basis alone I was diagnosed bipolar. It’s pretty clear to me now that had I simply had a supervised washout period at that time, the next 20 years didn’t have to be what they were: life heavily drugged and lived in a stupor. I now, as my mind clears as a result of the withdrawal, find myself awaking to feelings that have been numbed for twenty years. It’s a challenge, but one I seem to be rising to.

I have been on medication for approximately 20 years and I’ve been doing my withdrawal essentially as Peter Breggin recommends in Your Drug May Be Your Problem. I also include a rigorously healthy diet and nutrients to support my ravaged body. Lately, changes I’ve made to my nutritional regime seem to have been key in allowing for some very noticeable improvements in my physical well-being. Meditation and exercise play a role as well. I believe that healthy living all around is what helps us heal. I try to address, as the cliche puts it: the body, mind and spirit.

I’m currently down to .4 mg Risperdal — yes, that’s point 4 mg down from 11 mg — 105 mg of Lamictal down from 400 mg, and 3 mg of Klonopin. No more antidepressant, stimulant or Seroquel. A huge reduction, but it’s taken 4 years. I hope I might be able to complete the process by my next birthday in February. (This was written a few months ago. I am now only on 3 mg Klonopin and 25 mg Lamictal)

The symptoms I am having as a result of withdrawal are first and foremost physical. I’ve been rendered physically disabled by the drugs — specifically a crushing fatigue has struck me. I am sometimes bedridden and often do not feel safe driving. This is a result of my particular body and history on medications. Certainly not everyone who deals with withdrawal will get physically sick like I have. Lately, as I’ve said, with the help of intensive nutritional counseling I have been improving markedly.

Pages: 1 · 2

http://www.narpa.org/
http://www.narpa.org/rae.unzicker.htm

Rae Unzicker, 52, died on March 22nd at her home in Sioux Falls, South Dakota. Rae was one of the world’s leading advocates for the civil rights of people with psychiatric disabilities. She was an adamant pioneer of the self-evident truth that people with psychiatric disabilities have the same rights as other people to exercise free choice about how and where they will live and how and where they will receive treatment, if any. That they must not be involuntarily imprisoned in institutions, nursing homes, group homes, back rooms, or any other places. That they must not be subjected to forced drugging or forced treatment of any kind.

Over the years Rae advocated in forty-three states and several foreign countries. She authored numerous articles and appeared on prime time national television many times. In 1995 President Clinton appointed her to the National Council Disabilities. It is my impression that she was the first – certainly one of the first – outspoken advocates for the civil rights of people with psychiatric disabilities ever to receive a major Presidential appointment.

Rae’s crowning achievement was her promoting and editing of the National Council’s landmark manifesto, From Privileges to Rights: People Labeled with Psychiatric Disabilities Speaking For Themselves. This was perhaps the first formal statement by any nation supporting the rights of people with psychiatric disabilities to exercise free choice in their all aspects of their lives.

Rae was a brilliant person and a passionate, articulate supporter of her principles. She was full of love for all with whom she came in contact. I was profoundly moved by her epic courage. The monumental accomplishments of her last several years were made in the face of continuous, excruciating pain from terminal cancer. Rae Unzicker was truly a great soldier of justice, a great American pioneer patriot.

Let us unite to honor Rae Unzicker by rededicating ourselves to the kind of passionate, courageous advocacy for justice for all that she exemplified.

Rae, we miss you.
We love you.
Lead on.

Justin and Yoshiko Dart

TIME Magazine: www.time.com

By Andrea Sachs Monday, Aug. 27, 2007
Elyn Saks
Will Vinet

“My mind has been both my best friend and my worst enemy,” says Elyn Saks, the author of The Center Cannot Hold (Hyperion). It’s hard to argue with that. While Saks has soared to the top of academia — a graduate degree from Oxford, a law degree from Yale, and a tenured professorship at the University of Southern California — she has also been shackled and involuntarily committed to a mental hospital. Saks, 52, has schizophrenia, a chronic brain disorder that affects one in a hundred Americans. People with schizophrenia (which affect men and women equally) sometimes suffer from hallucinations, delusions, and imagined voices. Saks’ remarkable new book is a voice from a country rarely heard from, the land of psychosis. Like Girl, Interrupted by Susanna Kaysen and An Unquiet Mind by Kay Jamison, The Center Cannot Hold is the beautifully written saga of a young woman grappling with mental illness and ultimately triumphing. A movie may soon be appearing at a theater near you, given Hollywood’s intense interest in the book. TIME’s publishing reporter, Andrea Sachs, met with Saks (no relation) during the author’s recent book-tour stop in Manhattan.

TIME: Was your illness evident when you were a child?

SAKS: In a way, I had a very good and normal childhood. I had loving and caring parents. But I had a lot of quirks or problems when I was growing up. I had phobias and obsessions. I believed that there was a man standing outside of my window every night, waiting to break in and kill us all. A lot of kids have that fear, but mine lasted for years and years.

When was your first episode?

At seven or eight. I asked my dad, ‘can’t we go to the cabana?’ He kind of snapped at me, ‘I already said no, and the weather’s not great. I need to go back to work.’ And at that moment, I disappointed my dad. It felt like falling apart, my self losing coherence. Imagine a sand castle with all the sand sliding away in the receding surf. So in the end, there’s no center to take things in and process them and view the world. That was the first kind of scary, weird thing. Even more alarming, when I was 16 or 17, I suddenly, having just read Sylvia Plath and identifying with her, got up in the middle of the day [at school] and started walking home several miles away, something I’d never done before. I was a good girl — I never skipped school. And as I was walking, the houses got very ominous and foreboding, and I started to think that they were sending me messages. ‘Look! See! You must see! You are bad! You are evil!’ I didn’t hear it as voices; they were thoughts, but I thought they were thoughts put in my head by the houses. It was very scary.

You were a Marshall scholar at Oxford University in England. You write that your life began to unravel there. What happened?

I became very depressed. I totally lost my appetite and lost a huge amount of weight. I thought that I wasn’t supposed to speak, because speaking would spread my evil around. Obviously, it’s hard to make friends if you can’t talk with people, so I was very socially isolated, which was extremely painful. And I had mild paranoid ideas that people were talking about me and laughing at me behind my back, which may have been true, because I looked kind of bizarre walking down the street gesticulating and talking to myself.

You were put in a mental hospital against your will. What was that like?

It was horrifying. It’s demeaning and debilitating to have choice taken away in general, to not be respected as an autonomous agent. To be put in a hospital is an extreme version of that. You’re totally isolated from friends and family, and from your work. Freedom of locomotion is gone; freedom of choice is gone…It causes resentment and anger. I don’t say that it’s the case that nobody should be ever be hospitalized against their will, but I think that we should really study ways to help people seek the treatment that would be best for them. One of the things that forcibly hospitalizing people does is deter them from seeking help in the future.

What’s it like to have a psychotic episode?

It’s like a waking nightmare. You’re terrified, you’re confused, you have beliefs that are bizarre and frightening and confusing. I hallucinate a little bit, but not much. Mostly I form delusional beliefs, like that I have killed lots of people with my thoughts, or people are setting off nuclear explosions in my brain, or my brain’s going to leak out of my ears and drown people. Weird things like that, which are obviously terrifying.

What protection does medicine offer you?

It’s very good. The new meds I’m on [Clozapine, an anti-psychotic medication] make the episodes come further apart; they last less long when they happen, and they’re less intense when they happen. So it’s a kind of floor below which I don’t go. When I was on Navane [another anti-psychotic medication] back in New Haven, and the first five or 10 years in L.A., I was teetering on the edge all of the time. A slight breeze would push me over into the land of psychosis. Now, I’m mostly well. I’m mostly thinking clearly. I do have episodes, but it’s not like I’m struggling all of the time to stay on the right side of the line.

Do you still experience schizophrenic symptoms?

Even today, with all the treatment and all of the medication, I still have transient psychotic thoughts, probably daily. Where a thought like, I’ve killed people, comes to my mind and I just say, oh that’s your illness acting up.

How has being schizophrenic affected your social life?

The first two years I was ill at Oxford, I had no friends at all. It was very painful. I was unable to work. Somehow my analysis with Mrs. Jones [her psychoanalyst] in England interrupted those kind of negative symptoms, and I became able again to work and make friends. To me, friends have been one of the main things that have kept me doing well. But in terms of romantic relationships, when I became ill, I went seven years without a single date. I was so tortured by my internal demons that there was no space for another person. And then I started flirting with this guy down in the library named Will, which he didn’t pick up on. He left the law school, and [later] we met in the hall, and I said, ‘Let’s do lunch sometime.’ So he called me up and invited me to lunch. The next day, he brought a feather from his parrot, and placed it on my computer. I asked my friend that night, ‘Kenny, do you think a guy who plucks a feather from his bird and places it on your computer likes you?’ He said, ‘I don’t know, Elyn, but he likes you better than he loves his bird!’ I ended up falling in love with Will [who is now her husband]. I actually told him that he was the first person I’d ever been in love with that way, and he said that made him very sad. But he’s been a really great part of my life.

What is the biggest misconception that people have about schizophrenia?

There are lots of misconceptions about schizophrenia, [like that] patients are truly wild. In fact, of all the major mental illnesses, they’re the least violent. People can’t hold jobs, certainly not high-powered jobs…Can’t have close friends and family. Can’t live independently. A lot of those have some truth; they’re true of a certain portion of people with schizophrenia. But it seems to me that a lot more than is now the case could be leading far more gratifying [lives]. When you tell someone, ‘you’re not going to be able to work,’ or ’scale down your expectations,’ then they do. And yet work gives most people so much of a sense of well-being, productivity. You’re taking away from someone a thing that could be an important tool in their recovery by having these kind of negative expectations.

What advice would you give to other people suffering from mental illness?

Seek good care and a clinician you can really trust. Choose your friends wisely, and also choose friends that you can trust. Try to learn your illness — what it looks like when it starts happening, so you can take steps before it really takes you over.

What has happened since you ‘came out’ as a schizophrenic?

Most people have been enormously supportive, and kind and encouraging, and some thankful. I’m getting a lot of emails from fellow consumers. People call us mental health consumers now — that’s the P.C. way to say it.

Read more about Elyn Saks on the Next Page:

Pages: 1 · 2

Link: http://natlshrinestdymphna.org/

Geel is well known for the early adoption of de-institutionalization in psychiatric care. This practice is based on the positive effects that placement in a host family gives the patient, most importantly access to family life that would otherwise have been denied. The 7th-century Saint Dymphna, who had moved to the Geel area from Ireland, is usually credited for this type of care. The earliest Geel infirmary and the model where patients go into town, interact with the community during the day, and return to the hospital at night to sleep, date from the 13th century.

Originally, this practice was religiously motivated and organized by a chapter of canons, attached to the church of Saint Dymphna. By the 18th century, however, the placement of patients was mostly done directly, without the intervention of the canons. The number of patients grew in proportion to the growing city’s reputation abroad and the economic benefits flowing to the city provided further motivation to the inhabitants. Attracted by the gentle care of patients, Vincent Van Gogh’s father considered sending his famous son to Geel in 1879. The high point came in 1938, with a total of 3,736 placed patients, compared with only 700 a hundred years earlier.

This novel type of psychiatric care was evaluated by various other institutions around the world (see for instance Eastern State Hospital in Virginia), but often seen as too revolutionary to implement. It is only in the early 20th century that the idea of de-institutionalization was adopted more widely elsewhere. Today, a modern psychiatric centre stands on the place of the old infirmary, and close to 500 patients are still placed with inhabitants.

http://en.wikipedia.org/wiki/Geel#A_model_of_psychiatric_care

A hospital and Shrine for St. Dymphna is located in Ohio: http://natlshrinestdymphna.org/

Dymphna was born in Clogher in County Tyrone, Ireland. Her father was a local chieftain. When her mother died she was only fourteen. Her father Damon scoured the world for a suitable and equally beautiful replacement. After the search failed, his advisors pointed out to the chief that his teenage daughter had inherited her mother's looks. Driven mad by grief, Damon made advances on Dymphna. Together with her confessor, the elderly priest St. Gerebernus, she fled to Belgium. There they took refuge at a chapel near the present day site of Gheel, not far from Antwerp.

http://en.wikipedia.org/wiki/Saint_Dymphna