"People have the right and duty to participate individually and collectively in the planning and implementation of their health care."
Article 4, World Health Organization/UNICEF
Declaration of Alma-Ata, 1978, p 3.
This information has been compiled to assist those interested in some of the prescription drugs commonly prescribed in connection with psychiatric diagnoses. (The information was developed in 1991 and has not been updated to reflect new medications, new effects, new non-use and use strategies. SC 2003)
The ideas, suggestions and quotations are intended to help, to stimulate ideas and questions, and to be a starting point for each reader. But it is not a comprehensive answer for anyone, and should not be relied on as the sole source of information for any decision to add, change or withdraw from any medication.
It is not intended as medical advice, and has not been prepared in connection with any licensed physician.
Make your own decisions.
Include your family, friends, network, lover, spouse and doctor in your personal plan.
Be strong, and be well.
A project of Mood Matters, a 501(c)(3) non-profit association.
Sharewrite (s) 1991 Sylvia Caras. You may reproduce this material if your recipients may also reproduce it, you do not change it, you include this notice and my name.
This information was compiled from reports from more than 25 people in the United States, Canada, and England. The national networks spread the word that collected this information: The Teleconference, Peer Advocate, CAN, NARPA Tenet, Dendron.
This original hard-copy booklet was dedicated to each of you who contributed and to each of you who are now reading this. Thanks to mammaearth.com for formatting for the web and hosting
Definition and Preamble
Why People Stop Taking Drugs
Basics of Feeling Pretty Good
Support from Others
While Stopping Drugs
After Stopping Drugs
Choosing to Stay on Drugs
About Opportunity and Failure
To Learn More
DEFINITION AND PREAMBLE
Many people who have been given psychiatric diagnoses have also been given psychiatric medications to alter the feelings and behaviors that prompted the diagnoses.
Some people do not find these medications sufficiently useful.
Some people find the side effects unacceptable and want to discontinue the regimen.
These comments are directed towards people who have been taking one, many, or several different drugs for days or years, and no longer want to do that. And the comments are also directed towards people who have chosen to stay on medication.
Most of the information comes from testimony from people who have come off their medications and from people choosing to stay on.
The language used in this booklet is from generally accepted neutral vocabulary and, unless a direct quotation, is trying to avoid making any political statement.
WHY PEOPLE STOP TAKING DRUGS
Ask yourself some tough questions and have an answer that feels right for you:
Why do I want to stop at all?
What do I expect to feel like?
What do I expect to gain?
One person's memory lapses impeded him at school.
One person was in pain despite current medications because of a friend's death; professionals urged more drugs; she had insight that grief over the loss of a friend was meant to be experienced rather than suppressed; that was her turning point.
One person felt she was losing her sense of self to the doctors and drugs, that it was "you or me."
One person wanted to "learn to (control) myself rather than letting a drug do it."
One person was uncomfortably sensitive to light.
One person wanted one less thing to be dependent on.
One person had too severe side effects.
Off drugs, "the person I have forgotten, the 'real' self, emerges."
One person said "fear propelled me out of the system."
One person for whom anti-depressant drugs left her still unacceptably depressed stopped because "I can't feel much worse."
Most agree that drugs should be stopped 6 to 8 weeks before conception as part of safe planning for pregnancy. One mother felt the father should also stop 6 to 8 weeks before conception.
One person observed that aging may reduce the frequency of difficult emotional events and the intensity of experience. Dosages of all medications for those over 60 should be reduced, and some may not need at all the drugs they have been on for years.
Not much is known about long term use of any medications. People can have positive, ambivalent, neutral, or negative attitudes towards any form of medication or in particular towards psychiatric medication.
Understand your whole situation. You could trigger other medical predicaments by stopping drugs which mask other symptoms.
One estimate is that 10% of patients in psychiatric hospitals have an undiagnosed non-psychiatric illness.
Be sure you have an accurate diagnosis that comes from a complete medical workup.
"A holistic psychiatrist said that instead of manic depression I had a bad thyroid."
Thyroid conditions can mimic depression and psychosis. Get at least blood tests T3, T4, TSH from a dependable lab and get a correct interpretation of the results. One physician believes the free thyroxine index (FTI) is the most reliable indicator. Think about a more complete battery rather than a simple screening. Endocrinologists and internists understand thyroid function better than psychiatrists.
Lithium therapy lowers thyroid function. Candida is another illness that mimics psychiatric disorders. You may have environmental or other allergies. Are there perimenopausal factors?
You are a whole person. Are medications covering up social or psychological factors that could be better resolved another way?
Are you receiving Medicare, Medicaid, Social Security Supplements, disability insurance, subsidized housing, or aid from programs like that?
Some providers of medical care, housing, and other kinds of assistance may require that you take prescribed psychiatric medication in order to receive money, goods or services.
Find out whether you will be at risk of losing your benefits and whether providers should be told of your intention.
PLAN PLAN PLAN PLAN PLAN
A plan is important.
Some things to do are:
Understand the drugs that you are taking;
Research them; and
Know what to expect as withdrawal symptoms.
Your reaction may not be typical, may be just the opposite (paradoxical), may be unique.
For each drug, read the page in the Physician's Desk Reference (PDR) that public libraries and doctors' offices have, or the package insert for the drug that you may request from any pharmacist. The PDR is a collection of the inserts; the pharmacy insert is the most recent information from the manufacturer. This information is also available on the Internet.
Have an action plan if there is an aggravation of symptoms.
Give permission to drug or hospitalize (or not); and
Tell someone your wishes in event of a crisis for medication or for hospitalization or for someone to
stay with you or for someone to check on you.
Think about a way to handle any anger and irritability you may feel. Maybe plan a quiet safe place to be with familiar books, music, clothes, pictures.
Consider, if you take more than one drug, phasing them out one by one rather than all at once, or consider going off some, but not all.
"I used a tiny bit of Valium for a few days."
Tell people what you are up to.
Rehearse and role play how you will tell your decision to you a case manager or physician.
Those close to you may be apprehensive of the consequences that they anticipate.
They may worry about your present behaviors changing or reverting to previous distressful behavior.
They may see signs of trouble you don't experience.
They may interrupt your trying to withdraw precipitously.
Remember it is hard for your friends to see you suffer.
If your parents, children or other members of your family are a part of your life, tell them what you are planning and ask them to plan with you.
"I started to laugh hysterically and my daughter intervened and restored the drugs."
"I have a deal with my children that if severe symptoms return, I am to be hospitalized and stabilized on medication."
"My husband was great. He'd ask, 'Do you want to stop and sleep while you can choose to do so, or would you rather have cement in your brain?' (how I described Thorazine)."
As part of your preparation, set up a stable environment.
Devise precautions to take. Think about what discipline you will need.
One person separated himself from his mother (with whom he lives) to get through the high and regain stability.
Have a few sleeping pills and your regular drugs on hand just in case.
One person advised to expect to feel different, to create replacement tools, something to substitute, something that works.
Even if you are involuntarily hospitalized, in some states you may refuse medication.
Know the laws that effect you and who your Patient Advocate is. Get the phone number ahead of time.
"My physician said my irritability was a precursor to mania and advised more medication."
Do you have a favorite season that you look forward to, when you feel better? That season might be a good time to stop.
No matter how slow the withdrawal or how carefully you've planned, often there occurs an exacerbation, a recurrence, a blip of distress, before stabilizing again.
If this response burst is not understood, you may put yourself, or be put back, on drugs.
This phase can be gotten through. You need to figure out how you can go past this.
This rebound effect looks exactly like the start of a psychiatric episode.
Don't expect rebound within a few days. Many major tranquilizers are still in blood or urine up to six weeks after you stop medication.
Find out safely what your initial reaction will be. Several months before stopping take two 72-hour drug holidays.
Write down every one of your physical and psychological symptoms. Keep your notes for reference.
One person writes that doctors "can blame the client for adverse reactions and side effects which are actually caused by the drug," and professionals can let family and friends believe that what really are withdrawal symptoms are "underlying mental illness."
Elimination rates can change from first to zero order kinetics and medication levels in the blood change drastically.
A possible explanation for the rebound withdrawal phenomenon is: Assume your system is producing too much X and that the X is causing the psychiatric disorder. Drug D is prescribed and it stops some of the absorption of X. The body responds by creating more ways to produce and absorb X. Drug D inhibits those new ways also. You stabilize. Now you stop taking Drug D. Your body has all the original ways (maybe receptors) of using X and all the new ways that it produced to compensate when you were taking Drug D. Whoops, you over-respond. Your body produces too much.
The same process that worked for you to stabilize on the drug, will reverse eventually and adjust so that you can stabilize without it.
You can even out possible rebound effects by reducing doses slowly and modestly. One person's schedule: 2 weeks - 3/4 dose; 2 weeks - 1/2 dose; 3 days - nothing; 1 1/2 weeks - 1/2 dose; 3 days - nothing; 2 weeks - 1/4 dose. STOP.
The 1982 Physician's Desk Reference, says about Ativan that "abrupt withdrawal of any anti-anxiety agent may result in symptoms similar to those for which patients are being treated: anxiety, agitation, irritability, tension, insomnia, and occasional convulsions." This may be true for many drugs and especially for many drugs prescribed for psychiatric disorders.
Doctors speak of 'sympathetic discharge,' while the body adjusts to not having the medication.
Wait long enough before starting medication again to be sure that the symptoms you experienced were not from withdrawal, that you were really needing the medication.
GO SLOW. GO SLOW. GO SLOW.
Reduce dosages slowly.
One person said she tried cold turkey three times and got sick each time.
Allow enough time for your body to learn to regulate itself.
Reduce dosages incrementally.
Consider reductions in units of 10% of original dose, staying on each change for a week.
To adjust doses in units that aren't available from the manufacturer, dissolve tablets or empty capsules into a measured sterile solution and then divide dose. Pharmacists or chemists can help with the techniques.
BASICS OF FEELING PRETTY GOOD
Set up a healthy diet, cut way down on caffeine. Use herb teas, and know that they too are medicinal. One mineral that mineral waters may contain is lithium. Drugs used over time can deplete the body of vitamins. You can take supplements.
You may have some bowel changes like constipation or diarrhea and may want to eat more bulk and roughage, whole grains and salads.
Exercise any way that you enjoy. Walk whenever there's an opportunity. Dance.
Drink two quarts of water every day.
Sleep. Regulate your sleep. Sleep.
Keep your stress level low, however you can.
That may mean being with people more or being alone more, not answering the phone at all or calling friends often.
You may want to smoke more.
Don't use alcohol more even if you want to.
Some believe that body fat stores toxins and that losing weight may release these into the blood stream and that you may feel the effect long after you stop the drugs.
Take a holistic approach to realizing how all these things work together.
SUPPORT FROM OTHERS
"You really need people who know you well enough, and whom you trust enough to listen to their advice when they see a problem coming on. Your support system should be people who do not consider previous psychiatric diagnosis as limiting your potential to live the kind of life you choose."
One person's prior attempts failed for lack of peer support; the next time he was encouraged by a friend who had gone off and was an inspiration.
One person said he succeeded because of the "hand of God leading me out of the mess I was in. My spiritual values made me feel less alone, gave me something to fall back on."
One person's husband intervened and then they worked with their family doctor, instead of a specialist, to decrease dosages of neuroleptics.
A malpractice attorney recommends mandatory medication vacations from long term regimens to determine if need is still present. She believes it is a physician's ongoing responsibility to monitor both side effects and continuing need.
One person has a vision of paths of natural healing and personal balance through spiritual practices, and has adopted practices including:
Tai Chi Chih
staying in rhythm with nature
This person suggests that drug use is a secondary concern that will eventually slough away when a primary alternative is in place. "I find the path of letting go of meds lacking a framework or foundation. It seems to me a reaction to something outside oneself...To be free of meds, without an effective, sustainable supportive network, or community, or approach to living is throwing away a life preserver without first finding a serviceable boat or life raft to bring one to the shores of oneself."
One person writes "I now live on plant kingdom foods only."
Talk with some people who have cut out drugs. Find out what their experience has been. Remind yourself that others have been through this experience.
Know that your own experience may be different from that of others, or similar
One person was encouraged by the stories of others who succeeded in going off.
Find your inner peace.
"Apply the arts of living."
Affirm yourself as worthwhile, as capable of stopping drugs. One person has a special picture taped at eye level. That is the first image she sees when see wakes.
Listen to music that is centering, soothing.
One person advises, if you are fearful of going off drugs completely, you can protect yourself from long-term side effects and regain some energy and choice in your life by cutting your medication level by a third or a half.
One person writes, "I can control my hypomania and prevent it from developing into a manic state by following one simple rule: Do not stay awake for more than 24 hours no matter how good I feel."
One person sometimes uses over-the-counter medicines to induce drowsiness and sleep.
One person suggests a multiple approach, including vitamins, diet, herbs, and chiropractic.
One person reads something good for at least 15 minutes every day.
WHILE STOPPING DRUGS
"I went to a Zen Buddhist retreat center where the other guests and residents didn't fuel my mania. They were contemplative, weren't interested in engaging. I was able to feel an out-of-control spurt and quiet myself. I felt my depression more acutely but it was also relieved by the sense of community there."
"I was careful to not destroy acquaintanceships with my abruptness; although I was irritable and angry, my highly developed social skills remained intact. It was a strain; I needed to use a lot of self control."
"I was so used to taking medication, that I substituted aspirin, Tylenol, Sudafed, vitamins, cough syrup, but the over-the-counters were easy to give up in a few weeks."
"I go for acupuncture every three weeks, combined with herbal prescriptions and qigong exercises."
At first sign of problem, stop withdrawal, up dosage one increment, back off, wait for a while 'til you are calm; then proceed with withdrawal.
One person found fellowship in a work program. "I got into a work regimen I liked and I was determined to piece my life back together. I was doing "what I was good at doing previous to the 'illness'."
For any problems right now, think of drug-withdrawal related causes rather than psycho-social causes, at least until you re-stabilize.
Develop a reasonable expectation of how long you expect detoxing to take. Two months is not unusual.
Monitor the process. Keep a journal or calendar. Things
people said they did:
stopped answering the phone
stopped speaking on the telephone
restricted social involvement
stayed in peaceful places
created quiet around themselves
went to the country
went near ocean
went to church
went to the library
rode the bus round trip
avoided other pollutants like carbon monoxide and degassing synthetics like new carpeting, and
brand-new running shoes
"My doctor told me he has had many patients who withdrew from drugs while taking a homeopathic remedy."
AFTER STOPPING DRUGS
Allow yourself to use some medication as indicated, as desired, as needed. You keep changing and the world keeps changing so you should expect a continual stabilizing process.
It is not failure to intervene with an outside assist of medication, quickly and for a while.
Don't view the choices as either/or.
One person said that when her occasional depression begins to get too deep she takes Prozac.
"Nothing so far has worked. I'd try another anti-depressant, and even lithium with it, when a new one is marketed."
Rephrasing a Zen saying one person said: "After wellness comes the laundry."
One person manages her life circumstances carefully.
Now that you are not taking drugs, choose what to do about your psychiatric label. Some people call themselves psychiatric survivors. Some think of themselves in remission.
"I felt the effects for about 15 years. It felt that long to feel healed. Sometimes I think there may still be damage to my 'thermostat.'"
Have reasonable expectations for after you are past regular drug use and for taking some drugs, some times.
"Since I've been off the medication, my life hasn't been one continuous joy ride, there are ups and downs, highs, some hard to control."
One person is "bitchy when I'm over-extended."
Find safe spaces.
One person spoke of the different directions in our lives.
One person has been off three years and has some restoration of memory and ability to focus and organize.
"I've been off drugs for almost two years. There have been no big highs, some hypomania, much depression. I have more energy though still not much, am more creative and more productive, I have more of a sense of being in charge of myself."
One woman wears a T shirt which says "I'm OK, You're OK" on the front and "Recovering Anti-Psychotic Drug User" on the back.
One person is "refreshing (her life) with new languages, old skills."
One person is left with an inability to organize, to focus, and some memory loss.
CHOOSING TO STAY ON DRUGS
"I helped enthusiastically to get two people off phenothiazines. In each case (in one case two times) the person was in a mental hospital in three weeks."
"I'm scared to get off. Too many hassles and lost friends in the past."
"If I tried to get off ... and I ended up in the hospital, who would take care of my cat?"
"A lot of people depend on (drugs), for reasons they know best. ... (That's) important. Modern science has found ways of keeping them from going crazy, and they are reluctant (like me), of giving (drugs) up."
"I'm not entirely happy with lithium, but I continue to take it because its side effects are not debilitating (to me), and it has kept me out of the mental hospital for ten years."
"Once a year, when I'm on the 'depressed' swing of the cycle, I'll stop taking (lithium) for a month, just to clear out my system...Then I resume...I get more depressed as the month wears on, which goes away a few days after I start taking it again. I wouldn't dare stop it on the high side...I don't want to ever get manic again, if I can help it."
"I see lithium as different," a natural substance, a natural healing. I take "a typical daily dose every two or three days" as a "safety net." "You can go off lithium, of course, if you lead a very dull life and make sure you never get so stimulated that you can get thinking fast enought to get out of control. I, myself, would rather lead an exceptional life and do whatever I want, which is about twice as much as most people would even think about doing."
A nurse writes that "depression, panic, and anxiety are chemical imbalances that need skilled assessment and care."
ABOUT OPPORTUNITY AND FAILURE
"Keep starting over. Take vacations from efforts, if needed, here and there."
One person sent in these quotations about failure:
"Failure is, simply, a shortfall, evidence of the gap between vision and current reality. Failure is an opportunity for learning -- about inaccurate pictures of current reality, about strategies that didn't work as expected, about the clarity of the vision. Failures are not about our unworthiness or powerlessness."
"A mistake is an event, the full benefit of which has not yet been turned to your advantage." Edward Land, inventor of the Polaroid camera in Senge, p. 154.
"For most of us, beliefs change gradually as we accumulate new experiences -- as
we develop our personal mastery. But if mastery will not develop so long as we hold
unempowering beliefs, and the beliefs will change only as we experience our mastery, how
may we begin to alter the deeper structures of our lives?" Senge, p. 159.
The Fifth Discipline, Peter M. Senge, Doubleday, New York, 1990. Senge is a professor of business at MIT's Sloan School of Business Administration.
TO LEARN MORE
Connecticut's Changing Image newsletter reviews
The Physician's Desk Reference
Griffith, Drugs: The Complete Guide to Prescription and
Breggin, Psychiatric Drugs
One person recommends reading this description by a non- client anthropologist of her field work taking Prolixin: Estroff, Sue E., Making It Crazy: An Ethnography of Psychiatric Clients in an American Community, University of California Press: Berkeley and Los Angeles, 1981. In particular see pp. 105-106.
Edward M Podvoll, M D writes of recovery from medications in Chapter 5 of The Seduction of Madness: Revolutionary Insights into the World of Psychosis and a Compassionate Approach to Recovery at Home, Harper Collins, New York, 1990. In particular, he describes how the system can convert medications that are meant to sedate, to fuel emotional distress.
One person discovered Lithium increased her depression and fatigue.
One person is still recovering a year later from Lithium toxicity.
One person finds Depakote (Valproaic Acid) less sedating than Lithium.
One person went into a bad depression after stopping Clonopin (Clonazepam). The depression was suicidal, lasted two weeks, and was eased when the Clonopin connection was realized.
(Accurate in 1991:
For information about allergies to synthetics and to the environment, get in touch with the Human Ecology Action League (HEAL), Post Office Box 49126, Atlanta, GA 30359.
For the names of graduates in classical homeopathic methods, call IFH, 206 324 8230.
Several people recommend Stress Free herbal formula. )
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