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Saying no to drugs with Mad Pride
For some mentally ill people, being different is better than being doped up


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Depressed? There's a pill for that. Anxious? There's a pill for that too. Manic? Schizophrenic? Bipolar? There are pills for all of these conditions.

But psychiatric meds can produce serious and debilitating side effects - like weight gain or loss, a dulling of the senses, lowered libido, manic episodes and suicidal thoughts. This downside has spurred a grassroots movement among people with mental illness to try getting by without a little help from their pharmaceutical friends.

It's called Mad Pride, and although there are local adherents, the Mad does not stand for Madison. Rather, the movement is a revolt against the numbing of peculiar personalities with powerful chemicals. Those who take this path - sometimes with the help of medical professionals, sometimes in defiance of them - say they would rather embrace their madness then try to stifle it.

Among them is a Madison couple, Christin and her husband "Thom." Christin is her real first name; Thom is a pseudonym. Both are in their late 20s. Christin works at a local nonprofit; Thom is a personal-care assistant for people with dementia and Alzheimer's.

Christin was diagnosed with major depressive disorder at age 16 and with bipolar disorder eight years ago. She figures she's been prescribed almost 40 meds, including the antidepressants Paxil, Xanax and Effexor and mood stabilizer Lamictal.

"Being told you are going to be on an antidepressant for the rest of your life is quite a blow," says Christin. "Receiving treatment by a psychiatrist who doesn't know you as a person and wants to rewire your neurochemistry with meds was not what I wanted. I didn't feel a connection with my therapists. I felt isolated and alienated. I could relate better to my peer group who were going through the same thing that I was."

Thom, meanwhile, was diagnosed four years ago with bipolar disorder. He used alcohol and street drugs to help him cope. Then his doctor prescribed Effexor. The drug is meant to treat depression and anxiety, but Thom says it made him extremely manic, staying up for days without sleep. And when the mania ended, he became suicidal. He ended up going to the emergency room and was hospitalized for two days.

"At first I felt a lot of relief that he was getting help by professionals and that he would feel better soon," Christin explains. "I was so stressed out, feeling really helpless and confused. I was still in the mindset that getting professional help was the wisest and perhaps only way to deal with crisis situations."

Now she and Thom doubt it. They have come to see medication as part of the problem, not the solution, and are working to free themselves from it.

For Christin, it's the end of a long journey, to hell and back. "Eventually I couldn't tell if what I was feeling was because of the meds or because of what was going on in my life."

Christin has a term - "dumbed down" - for what Thom was like after he came home from the hospital with an array of prescribed medications. "I don't know which is worse," she says, "to be manic and dysphoric or to be subdued and soulless on a chemical cocktail."

During a four-year period, Thom was prescribed 20 different medications and experienced negative side effects with each. He gained 80 pounds while taking one med. While on lithium, he developed a benign thyroid tumor.

Currently he's on Depakote to stabilize his moods, Klonopin for anxiety and Geodon, an anti-psychotic. "My goal is to get off the meds, but if I go off the Depakote too quickly I could have a grand mal seizure," Thom says. He ended up in a detox clinic in Waukesha for two weeks after his dosage of Klonopin got too high. "It was a quality facility, but I was in there with heroin addicts and didn't feel that I belonged there."

In an interview, Thom seems preternaturally subdued, laidback and unenthusiastic. He says it feels as though his personality is slipping away. "I've become progressively dull. My creative drive to write music has declined substantially. My friends wonder what's happened."

Christin, for her part, is in the last stages of tapering off use of Effexor XR. But it isn't easy. This is her fourth attempt to get off Effexor because of withdrawal effects that include "brain zaps," periods of serotonin imbalance she says are unpleasant to the point of being painful: "It feels like some of the atoms in my body are stuck in time and kind of hiccup back and forth."

It was while surfing the web in search of answers that Christin learned about the Icarus Project, which began in Manhattan in 2004. The group, which now has more than 8,000 people on its web forum (www.theicarusproject.net), argues that those with mental illness ought to be able to treat their symptoms with such alternative methods as yoga and changes in diet and sleep patterns.

The Icarus Project is named after the boy in Greek mythology who flew too close to the sun with wings made of wax and feathers. Its co-coordinator is Will Hall, 43, who also co-founded the Freedom Center (www.freedom-center.org) in 2001. Based in Northampton, Mass., the Freedom Center is a support and activist organization that opposes the routine use of drugs as the medical standard for the mentally ill.

Both the Freedom Center and the Icarus Project are officially pro-choice with regard to medical treatment. They advocate a partnership between patients and therapists, as well as support systems among people with similar conditions. Explains Hall, "Having a community of people with whom you can share your experiences in the mental health system is beneficial."

For most of his life, Hall has experienced what he calls altered states of consciousness. He hears voices and has extreme emotions and out-of-body experiences. Afraid to share what was going on in his head, he isolated himself from others.

"My first experience with psychiatry was when I was 24," Hall relates in a phone interview. "The doctor prescribed Prozac, which at first made me feel better and productive. Then I started having manic episodes that included arguing with my co-workers, wearing weird clothes and acting strangely at work. Neither my doctor nor therapist warned me of the side effects or took me off the Prozac."

Hall's manic episodes cost him his career. He ended up wandering the streets of San Francisco hearing voices that urged him to kill himself. He was picked up and taken to a locked unit in a public psychiatric facility.

"I wasn't asked if I wanted to go," he says. "I was just taken." He was labeled schizophrenic and was in the public health system for a year, including two months in lock-up. Hall says that despite all the medications, his mental health problems went from bad to worse. "I wasn't exercising, ate more junk food and was traumatized by the things I saw and heard in the facility."

And so Hall began considering his options rather than accepting what authorities told him. He's now been free of psychiatric meds for 14 years.

"Mad Pride is the last frontier of civil rights," Hall says. "It's the least-valued set of civil rights."

In 2006, Christin and Thom were living in Minneapolis, where she started an Icarus Project group after one of her friends committed suicide. Eventually the group had about 70 people on its email list, and attendance at the weekly meetings ranged between five and 10.

The couple moved to Madison last August in order to live in a smaller, less hectic environment. But they missed the connection with others that the Icarus Project group provided.

And so, last December, Christin started the Mad Rads (short for Madison Radical Mental Health Collective). She says the first meeting attracted a dozen people; now attendance at meetings ranges from 10 to 20 people, with about 70 on the group's email list.

"It's still in the baby-steps stage," says Christin. "We have people who are trying to wean off meds, some who want to share their experiences with therapists and others who have found a med that works for them without hideous side effects but want the support of a peer group."

The group includes people diagnosed with bipolar disorder, schizophrenia, major depression, borderline personality disorder and other mental health problems. The group's website (www.theicarusproject.net/madrads) proclaims it a collective of "self-identified crazies, dreamers, manic depressives, compulsive (everythingers), dancers, thinkers, erratics and people with sensitive hearts and nervous systems."

Members meet weekly at the InfoShop on Williamson Street for two hours to share personal stories and offer support. They also talk about therapists who are supportive of their approach and those who aren't. "People ask how radical we are," notes Christin. "I reply that it's pretty radical to talk to a group of strangers about personal things in your life."

But the mainstream medical establishment looks at the Mad Pride movement with skepticism, even alarm. As they see it, patients with mental illness who stop taking their medication risk going into crisis and becoming ever more deluded.

Dr. Ronald Diamond, medical director of the Mental Health Center of Dane County and a tenured professor of psychiatry at the UW-Madison, has been in practice for 37 years, 23 of them at the Mental Health Center. He teaches psychopharmacology to social workers, counselors, nurses, clients and families of individuals with mental illness.

In his view, medications are used successfully to treat a wide range of illnesses. Sure there are side effects, but Diamond argues that they are seldom worse than the conditions they treat.

"There are no meds without side effects," he says. "Even aspirin has side effects."

While he wants to respect his patients' wishes, Diamond usually sees value in pharmaceuticals. "When patients come to my office and ask to get off their meds, I ask them how their life would get better without the meds," he says. "I try to steer away from moral judgment and not discourage them, but I have to ask them if they are better off living with the side effects."

One client, Diamond says, complained of weight gain from a medication that in other respects worked well. He says he responded: "You can either be a happy fat lady or an unhappy skinny lady, the choice is yours."

Diamond, who hadn't heard of the Icarus Project (the subject of a recent article in Newsweek), thinks abandoning medication is not a useful strategy. "People need to be educated about their diagnosis and the meds that will help them lead a more productive life." Yes, therapy and support groups are helpful, but he thinks these should augment medication and not replace it.

Other practitioners are more receptive to those who want to try different approaches.

"Everyone is different in how they tolerate antidepressants and other meds," says Susan A. Brown, Ph.D. Brown, an advanced practice nurse prescriber, has been in private practice for 30 years in Madison, and has helped wean patients from meds.

"If someone wants to get off their meds, it should be done under the counsel of the practitioner who prescribed the meds," she says. When she prescribes meds to patients, she has them sign a form so they know what they are taking along with the benefits and the risks.

People who abruptly stop taking antidepressants commonly experience symptoms including lethargy, insomnia, anxiety, dizziness, nausea and gastrointestinal problems.

In his book Comfortably Numb: How Psychiatry Is Medicating a Nation, Charles Barber talks about the overmedication of Americans. Barber, a lecturer in psychiatry at the Yale University School of Medicine, says in a phone interview with Isthmus that the vast majority of prescriptions for antidepressants are written by doctors who have no training in psychiatry and no clue as to how the drugs work.

"When a patient complains of the side effects, they are largely ignored," says Barber, who urges people to assert their right not to take things that make them feel bad. "People need to take charge of their health instead of being a passive recipient. Often they settle for taking a pill rather than taking control of their treatment."

Barber says that patients and therapists need to work as a team to determine the best course of action, and that therapists need to closely monitor patients taking antidepressants.

According to Barber's book, the use of antidepressants has skyrocketed over the past two decades. Thirty-three million Americans were prescribed at least one psychiatric drug in 2004, up from 21 million in 1997. Between 1995 and 2002, the use of antidepressants and other psychotropics increased 48%. By 2002, 11% of American woman and 5% of American men (which equates to about 25 million people) were taking antidepressants.

Zoloft's American sales of $3.1 billion in 2005 exceeded those of Tide detergent for the same year.

A study by the Centers for Disease Control looked at the 2.4 billion drugs prescribed in visits to doctors and hospitals in 2005. Of these, 118 million were for antidepressants. A year later, the number of antidepressant prescriptions rose to 227 million.

Barber explains that Big Pharma or the medico-pharmaceutical complex composed of companies that create psychotropic drugs have seen their profits soar. The combined profits of the top 10 drug companies in 2002 were greater than the profits of all the other 490 Fortune 500 companies put together.

Christin and Thom have discovered that they need to listen to their bodies and respond appropriately. "When I start to sleep less and eat less, I need to address it immediately so things don't spiral out of control," says Christin. "It's not as easy as it sounds, and it's not foolproof, but I am aware enough now that I know how to stabilize myself from stress and mood swings."

Taking vitamins, eating whole foods (including a pound of vegetables per day), following a vegan diet, maintaining a consistent sleep schedule and getting enough omega-3 fatty acids and B vitamins in her diet are ways that Christin copes as she tries to taper her meds.

Thom plans to enter nursing school to specialize in caring for those with second-stage dementia and Alzheimer's disease. He's turned to spirituality and hopes to soon be writing music again.

Getting off psychiatric drugs - some advice
Even those who advocate discontinuing the use of psychiatric drugs acknowledge the risks. They recommend some guidelines:

  • Prepare yourself by learning all you can about withdrawing from your psychiatric drug.
  • Timing is important. Wait until you have what you need - housing, stability, a regular schedule - in place.
  • Get help if you can. Working with a doctor or health-care practitioner who is on your side can make a huge difference. Involve supportive friends and family.
  • Create a "Mad Map" or "advance directive," a crisis plan telling people what to do if you go into serious crisis and have trouble communicating or taking care of yourself.
  • Strengthen your immune system with plenty of rest, fresh water, healthy food, exercise, outdoor air, sunlight, visits to nature and connections with your community.
  • Go slow and taper off gradually. Withdrawing from psychiatric drugs abruptly can trigger dangerous effects, including seizures and psychosis. As a general principle, the longer you are on a drug, the longer you should take going off it.
  • Start with one drug. Choose the one that is giving you the worst negative effects, the drug you feel is the least necessary, or the one that's easiest to stop.
  • If withdrawal is unbearable, too difficult or continues for too long, increase the dose again.

Extrapolated from the Harm Reduction Guide to Coming off Psychiatric Drugs, www.theicarusproject.net.

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