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SO MANY QUESTIONS
The Quick Reference Guide
Some people who have schizophrenia experience symptoms for a long time, possibly many years, before they get help. Other people seem to develop symptoms very suddenly. But as they begin to feel better, everyone has many questions. For this reason, this chapter discusses issues that often worry people as they begin to recover. Here are the most frequently asked questions, with answers by our team at Zucker Hillside Hospital. If you have more questions, write them down and discuss them with the people treating you. You will also find more information in the chapters that follow.
SASHA
Special contributors: Julia Becker, M.D. and Delbert Robinson, M.D.
SASHA: I came from a dysfunctional family. All my life I was transferred from one foster home to another and in and out of institutions. I didn’t know my mother when I was young. I lived in an institution run by nuns until I was seven.
Now I am a 35-year-old woman with a 7-year-old son. I was a corrections officer making $40,000 a year. I was having suicidal thoughts because my life got me upset. I overdosed, so my stomach was pumped and I was referred for counseling.
I lost my job due to my psychosis and was placed in a psychiatric hospital where I was treated for schizophrenia. I had hallucinations: seeing people that looked like animals and horses with human heads; voices saying, “Sasha, how could you leave your son?” Other times they would say, “Leave him. He’d be better off without you.” I was a compulsive cleaner, washing everything with Lysol every day. There was something strange about my face, but I don’t remember. I used to masturbate a lot during that time. I thought somebody was talking through my mouth. I would polish my nails every day a different color. If I heard a voice when I was sitting on the bus, I would try to read a book. It sounded like the voice was next to me.
QUESTION:
What’s happening to me?
ANSWER:
When you came into the hospital you were experiencing symptoms caused by a chemical imbalance in the brain. These are symptoms of a psychotic illness, just as a fever and coughing are symptoms of the flu. See the Symptom List in chapter 4.
GENEVIVE: They never told me I was sick until I left the hospital. If I’d been told that it was an illness, and they had explained the nature of the illness, that would have helped. I knew I was hearing the voices, but how come I was hearing them? And why did I think that even my mother was going to poison me?
QUESTION:
Am I the only one?
ANSWER:
Schizophrenia is a brain disorder that affects one percent of the population of the world. That means that there are over two million people in the United States alone who have schizophrenia. That’s a lot of people. You are definitely not alone.
SHARON: I always felt like I was different from everybody else, always had to be in special education, always needed special attention. I wanted to be normal like everyone else. I hated the fact that when I was younger I had to take medicine because I was a hyperactive kid. All of a sudden they tell me I have an illness called schizophrenia. It made me feel ashamed of myself, like I couldn’t do anything right like a normal person.
QUESTION:
Why me?
ANSWER:
Why this illness happens to one person and not another is still unknown. A number of researchers are investigating different possible causes of schizophrenia, but for now the exact cause is unknown. We know that schizophrenia’s onset is usually between adolescence and age thirty-nine, but sometimes it affects younger or older people. We know that schizophrenia is not contagious. Although schizophrenia and other kinds of mental illness can run in families, we do not believe it is caused by family interaction. It is possible that there is a combination of causes at work. But no matter how this disease develops, it is important to remember that schizophrenia is an illness, and no one is responsible for causing it.
MARCUS: “Why is this happening to me and not to anyone else?” You were doing so good in the beginning and you didn’t have any problems at all and all of a sudden this hits you and you wonder, “Why did this happen to me?” I thought about it a lot, but after a while you get over it. The medication and the groups help.
QUESTION:
Why now?
ANSWER:
Most people who develop schizophrenia do so in their late teens to mid-twenties. Many people have wondered about why things seem to be going along just fine and then suddenly there it is: schizophrenia. What we do know is that the brain continues to grow until the late teenage years. At that time it begins to go through a pruning process, like cutting back the branches of a tree when it gets too large and unruly. One thought is that something goes wrong in the pruning. But that is only one idea. Scientists are learning much more about the developing brain than ever before and hope to answer this question in the future.
QUESTION:
Can schizophrenia be cured?
ANSWER:
Schizophrenia is an illness that can be treated, but there is no cure at this time. In this way it is like diabetes or high blood pressure: it requires careful monitoring and treatment. Recovery is a slow process that usually takes many months. As with any other illness, each person’s recovery is different. But most people experiencing schizophrenia for the first time respond well to medication. In time, many return to school or work, make friends, date, marry, and enjoy life again.
BEN: The first four times I was hospitalized, to me that was the learning process. For me it had to be, because if it wasn’t then this illness would be lifelong. I learned what my illness was and to live with it, what I had to do. It took four hospitalizations, but the main thing is to take my medication.
RESEARCH FINDINGS
Will I Get Better?
People with first-episode schizophrenia or schizoaffective disorder have very high rates of response to medication treatment. Nine out often people with first-episode schizophrenia or schizoaffective disorder get substantially better with treatment; the others usually have some improvement despite continued symptoms.—Delbert Robinson, M.D.
QUESTION:
How is schizophrenia treated?
ANSWER:
Most people are treated for the first time in the hospital. While you are in the hospital you are in a safe place. The first task of the psychiatrists is to interview you in order to get a good picture of your symptoms. Asking you questions is the only way to find out what is wrong. Learning about your symptoms is like taking your temperature when you have the flu. Then your doctor may order lab tests or other tests such as a CAT scan or MRI to eliminate other possible disorders that might be causing the symptoms. Next your doctor usually prescribes medication. You are watched for any side effects, and the medication is adjusted depending upon how well you respond to it. It usually takes a while for symptoms to be adequately controlled. Once you are feeling better and the psychiatrist believes you are ready, you will be discharged. How long this takes varies for each person.
After discharge you will begin treatment with a psychiatrist and therapist or you may join a day program, which will provide intensive treatment to you as an outpatient. You will attend groups for therapy and receive help to get you ready to resume your life. You will also have access to a psychiatrist and a nurse to deal with any problems you might have with your medication. You may also have an individual therapist and a case manager. A case manager is someone who helps you with problems you might encounter after being discharged from the hospital, such as finding a place to live or getting benefits.When you leave the day program you will continue to see a psychiatrist and therapist, but less frequently. Since there is currently no cure for schizophrenia, you will need to continue to see your doctor regularly. Your need to see the psychiatrist and therapist will probably decrease as you improve.
VANESSA: I know my sister went through the same thing. She has schizophrenia and she was telling me that it doesn’t happen to everybody. Some people don’t expect it to happen to them. But it happened to her. She had similar reactions to what I had. She told me not to be afraid, that the medication would help me, and as long as I continued therapy that would help also.
QUESTION:
What about medication?
ANSWER:
The medicines that help eliminate psychotic symptoms are called antipsychotic medications. These work to decrease the chemical imbalance that is causing symptoms. They are not addictive.
The psychiatrist gradually adjusts the medication so that you are getting the best dose for your individual needs. Since each person’s body metabolizes medicine differently, it often takes several months to find the right dose for you. For a more complete explanation of how antipsychotic medications work, see chapter 8.
JEFF: Sometimes I think, “Why am I taking the medication, because I am not having a hard time?” But they say if you stop taking it you will have a relapse. I don’t want to have any problems. It’s kind of nice not having problems. They say I am taking it so I don’t get into any psychotic moods.
RESEARCH FINDINGS
How Long Does It Take?
Most people have some improvement within one or two weeks of starting medication treatment. People continue to improve for a long time after that. The average length of medication treatment before the delusions and hallucinations totally go away is around two months. Don’t get discouraged too soon. Give the treatment time to work.—Delbert Robinson, M.D.
The thermostat in your house keeps the temperature from getting too hot or too cold. The medicine works in a similar way. It regulates the chemicals of the brain so that they stay in the “comfortable zone.”
QUESTION:
What are the side effects of medication, and should I be worried about them?
ANSWER:
Side effects are unwanted results of taking medication. Some people experience severe side effects, while others have mild side effects or none at all. Some common side effects of antipsychotic medications are weight gain, restlessness, tiredness, drooling, and muscle stiffness.
Some side effects decrease as your body adjusts to the medication. For instance, drooling and tiredness usually improve with time. However, it is important to complain to your doctor about any problems so adjustments or changes can be made. For example, don’t be embarrassed to tell your doctor if you experience lowered sex drive. Medication adjustments can help, but only your doctor can safely make adjustments or changes to your medication. For additional information on side effects, see chapters 8 and 10.
RESEARCH FINDINGS
Do the Medications Have Side Effects?
Each of the medications has potential side effects. You should discuss with your doctor the potential side effects of the specific medication you are taking. If you experience anything that you think may be a side effect, be sure to bring this up with your doctor. Many medication side effects can be lessened or eliminated, but your doctor needs to know about them in order to help you. People with untreated side effects are more likely to stop their medications and thereby have a relapse.—Delbert Robinson, M.D.
NEW SIDE EFFECT FINDINGS
Increased Cholesterol and Insulin Levels
Most people beginning treatment today take one of the newer medications that have been developed to have fewer side effect problems. Unfortunately, some of these newer medications, such as olanzapine, clozapine, risperidone, quetiapine, ziprasidone, and aripiprazole, may cause metabolic problems.
There are two metabolic problems of concern: high cholesterol and increased insulin levels. For most people the metabolic problems are the result of weight gain that stresses the body in ways that cause the increased cholesterol and insulin levels. This means it is important to have your cholesterol and insulin levels checked by your medical doctor every six months. And it means being extra careful to exercise and eat low-fat and low-calorie foods. See chapter 11 for diet and exercise recommendations.
AMBER: The first medication they put me on was clozapine. I had a lot of side effects. I drooled a lot, and at times I was constipated. I had to have weekly blood tests to test the white blood cell count, and I didn’t like the black-and-blue marks the needles gave me. I told my doctor about that, and she decided to switch me to another medicine called olanzapine. It has been working out great. I don’t drool as much, and I don’t have the constipation. It still makes me drowsy when I take it at night. But it helps me go to sleep, and it’s been working out for me. I haven’t had any symptoms since I was on Low III two years ago.
QUESTION:
How will the medication affect pregnancy?
ANSWER:
For females: If you decide to become pregnant, you should discuss it with your psychiatrist, who will advise you of your options. By planning carefully, you will be able to decrease risks to your unborn child.
For males: At this time there are no known risks to a child whose father is taking an antipsychotic medication at the time of conception. However, males on medication may have difficulty with sexual performance.
SAM: I had zero, less than zero, sexual interest when I was twenty-four on Prolixin. I didn’t tell the doctor for two years.
QUESTION:
Can I ever go off my medication?
ANSWER:
Eliminating the psychotic symptoms requires taking antipsychotic medication. Even when the symptoms are gone, the medication continues to work to prevent the chemical imbalance in your brain from returning. For example, people with diabetes take medicine and adjust their diets in order to keep their blood sugar controlled. This prevents flare-ups and complications in the long run. Likewise, if you have schizophrenia, it is important to take the medications and work with the doctors not only to treat the symptoms but also to stay well.
Other factors involved in staying well include sleeping regularly, eating well, and getting exercise. Keeping stress levels low is also essential. Relapse is not good for you, and it feels awful. It is very disruptive to your life; you may lose your place in school or at work. It upsets people who care about you and adds to your hospital bills. Most important, sometimes people do not recover as well after several relapses.
BUCK: I thought I could live my life without taking medication, but I ended up in the hospital again. Then it got worse. I started losing my concentration and my memory got bad. That’s when I finally realized I had to take the medication.
JEFF: The doctors say that 98 percent of the people who stop taking their medication go back into the hospital. So I take it. I don’t want to have problems like that. Such a large number of people relapsed; I don’t want to be a part of that. I want to be doing okay, just taking the meds.
QUESTION:
What if I refuse to take medication?
ANSWER:
If the medical team believes you are a danger to yourself or to other people, they will bring your case to a judge. The judge will decide whether you must remain in the hospital and take medication. If you are not in the hospital and you appear to be in danger of hurting yourself or others, anyone can contact the police to begin the treatment process. It is always in your own best interests to be a voluntary patient and work with your treatment team.
RESEARCH FINDINGS
Once I Get Better, Will My Symptoms Ever Return?
The medications improve symptoms but don’t cure the disease. Maintenance medication decreases the risk of relapse. People who take maintenance medication have one fifth the risk of relapse of people who do not take maintenance medication.—Delbert Robinson, M.D.
QUESTION:
How do they know it is schizophrenia?
ANSWER:
Often, once the doctor gets a history of symptoms, he or she can give a clear diagnosis. Sometimes, at the beginning, it is harder to tell exactly what is wrong. For instance, schizoaffective disorder is one form of schizophrenia, but it can look a lot like bipolar disorder (also known as manic depression). The doctor may need more time to make a diagnosis in such cases. For additional information on diagnosing schizophrenia, see chapter 6.
ZELDA: Doctors and therapists made their decision based upon observations of my situation—paranoia, mixed-up thinking, delusions, depression. These symptoms were real. So, if these signs all point to schizophrenia, I suppose I’ve got a case. Generally, that’s one description of who I am today—but that’s not the only one. I don’t fit that neatly into a box.