Living with Schizoaffective Disorder
Being schizoaffective is like having manic depression and schizophrenia at the same time. It has a quality all its own though which is harder to pin down.
Manic depression is characterized by a cycle of one’s mood between the opposite extremes of depression and a euphoric state called mania. Schizophrenia is characterized by such disturbances in thought as visual and auditory hallucinations, delusions and paranoia. Schizoaffectives get to experience the best of both worlds, with disturbances in both thought and mood. (Mood is referred to clinically as “affect”, the clinical name for manic depression is “bipolar affective disorder”.)
People who are manic tend to make a lot of bad decisions. It is common to spend money irresponsibly, make bold sexual advances or to have affairs, quit one’s job or get fired, or drive cars recklessly.
The excitement that manic people feel can be deceptively attractive to others who are then often conned into the belief that one is doing just fine — in fact they are often quite happy to see one “doing so well”. Their enthusiasm then reinforces one’s disturbed behaviour.
I decided that I wanted to be a scientist when I was very young, and throughout my childhood and teenage years worked steadily towards that goal. That sort of early ambition is what enables students to get accepted into a competitive school like Caltech and enables them to survive it. I think the reason I was accepted there even though my high school grades weren’t as good as the other students was in part because of my hobby of grinding telescope mirrors and in part because I studied Calculus and Computer Programming at Solano Community College and U.C. Davis during the evenings and summers since I was 16.
During my first manic episode I changed my major at Caltech from Physics to Literature. (Yes, you really can get a literature degree from Caltech!)
The day I declared my new major I came across the Nobel Prize-winning Physicist Richard Feynman walking across campus and told him that I’d learned everything I wanted to know about physics and had just switched to literature. He thought this was a great idea. This after I’d spent my entire life working towards becoming a scientist.
When Did it Happen?
I have experienced various symptoms of mental illness for most of my life. Even as a young child I had depression. I had my first manic episode when I was twenty, and at first thought it was a wonderful recovery after a year of severe depression. I was diagnosed as schizoaffective when I was 21. I’m 38 now, so I have lived with the diagnosis for 17 years. I expect (and have been emphatically told by my doctors) that I’m going to have to take medication for it for the rest of my life.
I have also had disturbed sleeping patterns as long as I can remember – one reason I’m a software consultant is that I can keep irregular hours. That’s a primary reason why I went into software engineering at all when I left school – I did not think my sleeping habits would allow me to hold a real job for any length of time. Even with the flexibility most programmers have, I don’t think the hours I keep now would be tolerated by many employers.
I left Caltech when my illness got really bad at the age of 20. I eventually transferred to U.C. Santa Cruz and finally managed to get my physics degree, but it took a long time and a great deal of difficulty to graduate. I had done well in my two years at Caltech, but to complete the last two years of classes at UCSC took me eight years. I had very mixed results, with my grades depending on my mood each quarter. While I did well in some classes (I successfully petitioned for credit in Optics) I received many poor grades, and even failed a few classes.
A Poorly Understood Condition
I’ve been writing online about my illness for a number of years. In most of what I have written, I referred to my illness as manic depression, also known as bipolar depression.
But that’s not quite the right name for it. The reason I say I’m manic depressive is that very few people have any idea what schizoaffective disorder is — not even many mental health professionals. Most people have at least heard of manic depression, and many have a pretty good idea of what it is. Bipolar depression is very well known to both psychologists and psychiatrists, and can often be effectively treated.
I tried to research schizoaffective disorder online a few years ago, and also pressed my doctors for details so I could understand my condition better. The best anyone could say to me is that it is “poorly understood”. Schizoaffective disorder is one of the rarer forms of mental illness, and has not been the subject of much clinical study. To my knowledge there are no medications that are specifically meant to treat it – instead one uses a combination of the drugs used for manic depression and schizophrenia. (As I will explain later, while some might disagree with me, I feel it is also critically important to undergo psychotherapy.)
The doctors at the hospital where I was diagnosed seemed to be quite confused by the symptoms I was exhibiting. I had expected to stay only a few days, but they wanted to keep me much longer because they told me that they did not understand what was going on with me and wanted to observe me for an extended time so they could figure it out.
Although schizophrenia is a very familiar illness to any psychiatrist, my psychiatrist seemed to find it very disturbing that I was hearing voices. If I had not been hallucinating he would have been very comfortable diagnosing and treating me as bipolar. While they seemed certain of my eventual diagnosis, the impression I got from my stay at the hospital was that none of the staff had ever seen anyone with schizoaffective disorder before.
There is some controversy as to whether it is a real illness at all. Is schizoaffective disorder a distinct condition, or is it the unlucky coincidence of two different diseases? When “The Quiet Room” author Lori Schiller was diagnosed with schizoaffective disorder, her parents protested that the doctors really didn’t know what was wrong with their daughter, saying that schizoaffective disorder was just a catch-all diagnosis that the doctors used because they had no real understanding of her condition.
Probably the best argument I’ve heard that schizoaffective disorder is a distinct illness is the observation that schizoaffectives tend to do better in their lives than schizophrenics tend to do.
But that is not a very satisfying argument. I for one would like to understand my illness better and I would like those from whom I seek treatment to understand it better. That can only be possible if schizoaffective disorder were to get more attention from the clinical research community.
Someone You Know Is Mentally Ill
One out of three people is mentally ill. Ask two friends how they’re doing. If they say they’re OK, then you’re it.
Mental illness is common in the entire world’s population. However many people are unaware of the mentally ill who live among them because the stigma against mental illness forces those who suffer to keep it hidden. Many people who ought to be aware of it prefer to pretend it doesn’t exist.
The most common mental illness is depression. It is so common that many are surprised to find out that it is considered a mental illness at all. About 25% of women and 12% of men experience depression at some time in their lives, and at any given moment about 5% are experiencing major depression. (The statistics I find vary depending on the source. Typical figures are given by Understanding Depression Statistics.)
Roughly 1.2% of the population is manic depressive. You probably know more than a hundred people – the chances are great that you know someone who is manic depressive. Or to look at it another way, according to K5’s advertising demographics, our community has 27,000 registered users and is visited by 200,000 unique visitors each month. Thus we can expect that K5 has roughly 270 manic depressive members and the site is viewed by about 2,000 manic depressive readers each month.
A slightly smaller number of people have schizophrenia.
About one in two hundred people get schizoaffective disorder during their lives.
More statistics can be found in The Numbers Count.
While homelessness is a significant problem for the mentally ill, most of us are not out sleeping on the streets or locked up in hospitals. Instead we live and work in society just as you do. You will find the mentally ill among your friends, neighbors, coworkers, classmates, even your family. At a company where I was once employed, when I confided that I was manic depressive to a coworker in our small workgroup, she replied that she was manic depressive too.
Life on a Roller Coaster
Nullum magnum ingenium sine mixtura dementiae fuit. (There is no great genius without madness.)
When I don’t feel like going to the trouble to explain what schizoaffective disorder means, I commonly say that I’m manic depressive rather than schizophrenic because the manic depressive (or bipolar) symptoms are more prevalent for me. But I experience schizoid symptoms as well.
Manic depressives experience alternating moods of depression and euphoria. There can (blessedly) be periods of relative normalcy in between. There is a somewhat regular time period to each person’s cycle, but this varies dramatically from person to person, ranging from cycling every day for the “rapid cyclers” to alternating moods about every year for me.
The symptoms tend to come and go; it is possible to live in peace without any treatment sometimes, even for years. But the symptoms have a way of striking again with an overwhelming suddenness. If left untreated a phenomenon known as “kindling” occurs, in which the cycles happen more rapidly and more severely, with the damage eventually becoming permanent.
(I had lived successfully without medication for quite some time through my late 20’s, but a devastating manic episode that struck during graduate school at UCSC, followed by a profound depression, made me decide to go back on medication and stay with it even when I was feeling well. I realized that even though I might feel fine for a long time, staying on medication was the only way to avoid being caught by surprise.)
You may find it odd that euphoria would be referred to as a symptom of mental illness, but it is unmistakably so. Mania is not the same as simple happiness. It can have a pleasant feel to it, but the person who is experiencing mania is not experiencing reality.
Mild mania is known as hypomania and usually does feel quite pleasant and can be fairly easy to live with. One has boundless energy, feels little need to sleep, is creatively inspired, talkative and is often taken to be an unusually attractive person.
Manic depressives are usually intelligent and very creative people. Many manic depressives actually lead very successful lives, if they are able to overcome or avoid the illness’ devastating effects – a nurse in Santa Cruz’ Dominican Hospital described it to me as “a class illness”.
In “Touched with Fire” Kay Redfield Jamison explores the relationship between creativity and manic depression, and gives biographies of many manic depressive poets and artists throughout history. Jamison is a noted authority on manic depression not just because of her academic studies and clinical practice – as she explains in her autobiography “An Unquiet Mind” she is manic depressive herself.
I have a bachelor’s degree in Physics, and have been an avid amateur telescope maker for much of my life; this led to my Astronomy studies at Caltech. I taught myself to play piano, enjoy photography, and am quite good at drawing and even do a little painting. I have worked as a programmer for fifteen years (also mostly self-taught), own my own software consulting business, own a nice home in the Maine woods, and am happily married to a wonderful woman who is very well aware of my condition.
I like to write too. Other K5 articles I have written include Is This the America I Love?, ARM Assembly Code Optimization? and (under my previous username) Musings on Good C++ Style.
You wouldn’t think that I have spent so many years living in such misery, or that it is something I still have to deal with.
Full-blown mania is frightening and most unpleasant. It is a psychotic state. My experience of it is that I can’t hold any particular train of thought for more than a few seconds. I can’t speak in complete sentences.
My schizoid symptoms get a lot worse when I am manic. Most notably I get profoundly paranoid. Sometimes I hallucinate.
(At the time I was diagnosed, it was not thought that manic depressives ever hallucinated, so my diagnosis of schizoaffective disorder was based on the fact that I was hearing voices while I was manic. Since then it has become accepted that mania can cause hallucinations. However I believe my diagnosis to be correct based on the current Diagnostic and Statistical Manual criterion that schizoaffectives experience schizoid symptoms even during times they are not experiencing bipolar symptoms. I can still hallucinate or get paranoid when my mood is otherwise normal.)
Mania is not always accompanied by euphoria. There can also be dysphoria, in which one feels irritable, angry and suspicious. My last major manic episode (in the Spring of 1994) was a dysphoric one.
I go for days without sleeping when I am manic. At first I feel that I don’t need to sleep so I just stay up and enjoy the extra time in my day. Eventually I feel desperate to sleep but I cannot. The human brain cannot function for any extended period of time without sleep, and sleep deprivation tends to be stimulating to manic depressives, so going without sleep creates a vicious cycle that might only be broken by a stay in a psychiatric hospital.
Going a long time without sleeping can cause some odd mental states. For example there have been times when I lay down to try to rest and started dreaming, but did not fall asleep. I could see and hear everything around me, but there was, well, extra stuff going on. One time I got up to take a shower while dreaming, hoping that it might relax me enough that I could fall asleep.
In general I’ve had the fortune to have a lot of really odd experiences. Another thing that can happen to me is that I might be unable to distinguish between being awake and asleep, or to be unable to distinguish memories of dreams from memories of things that really happened. There are several periods of my life for which my memories are a confusing jumble.
Fortunately I have only been manic a few times, I think five or six times. I have always found the experiences devastating.
I get hypomanic about once a year. It usually lasts for a couple of weeks. Usually it subsides, but on rare occasions escalates into mania. (However I have never become manic when I was taking my medication regularly. The treatment is not so effective for everyone, but at least that much works well for me.)
Many manic depressives long for the hypomanic states, and I would welcome them myself, if it weren’t for the fact that they are usually followed by depression.
Depression is a more familiar state of mind to most people. Many experience it, and almost everyone has known someone to experience depression. Depression strikes about one quarter of the world’s women and one eighth of the world’s men at some time in their lives; at any given time five percent of the population is experiencing major depression. Depression is the most common mental illness. (See Understanding Depression Statistics.)
However in its extremity depression can take on forms that are much less familiar and can even be life-threatening.
Depression is the symptom that I tend to have the most trouble with. Mania is more damaging when it happens, but it is rare for me. Depression is all too common. If I did not take antidepressants regularly, I would be depressed most of the time – that was my experience for most of my life before I got diagnosed.
In its milder forms depression is characterized by sadness and a loss of interest in the things that make life pleasant. Commonly one feels tired and unambitious. One is often bored and at the same time unable to think of anything interesting to do. Time passes excruciatingly slowly.
Sleep disturbances are common in depression too. Most commonly I sleep excessively, sometimes twenty hours a day and at times round the clock, but there have been times when I had insomnia as well. It’s not like when I’m manic – I get exhausted and wish desperately to just get some sleep, but somehow it evades me.
At first the reason I sleep so much when depressed is not because I am tired. It is because consciousness is too painful to face. I feel that life would be easier to bear if I were asleep most of the time, and so I force myself into unconsciousness.
Eventually this becomes a cycle that is difficult to break. It seems that sleeping less is stimulating to manic depressives while sleeping excessively is depressing. While sleeping excessively my mood gets lower and lower, and I sleep more and more. After a while, even during the few hours I spend awake I feel desperately tired.
The best thing to do would be to spend more time awake. If one is depressed it would be best to sleep very little. But then there’s the problem of conscious life being unbearable, and also finding something to occupy oneself during the interminable hours that pass each day.
(Quite a few psychologists and psychiatrists have also told me that what I really need to do when I am depressed is get vigorous exercise, which is just about the last thing I feel like doing. One psychiatrist’s response to my protest was “do it anyway”. I can say that exercise is the best natural medicine for depression, but it may well be the hardest one to take.)
Sleep is a good indicator for mental health practitioners to study in a patient, because it can be measured objectively. You just ask the patient how much they’ve been sleeping and when.
While you can certainly ask someone how they’re feeling, some patients may be either unable to express their feelings eloquently or may be in a state of denial or delusion so that what they say is not truthful. But if your patient says he’s sleeping twenty hours a day (or not at all), it is certain that something is wrong.
(My wife read the above and asked me what she was supposed to think about the times when I sleep twenty hours at a stretch. Sometimes I do that and claim that I’m feeling just fine. As I said my sleeping patterns are very disturbed, even when my mood and my thoughts are otherwise normal. I have consulted a sleep specialist about this, and had a couple sleep studies done in a hospital where I spent the night hooked up to an electroencephalograph and electrocardiograph and all manner of other detectors. The sleep specialist diagnosed me with obstructive sleep apnea and prescribed a Continuous Positive Air Pressure mask to wear when I sleep. It helped, but did not make me sleep like other people do. The apnea has improved since I lost a lot of weight recently, but I still keep very irregular hours.)
When depression becomes more severe, one becomes unable to feel anything at all. There is just an empty flatness. One feels like one has no personality whatsoever. During times I have been very depressed, I would watch movies a lot so I could pretend I was the characters in them, and in that way feel for a brief time that I had a personality – that I had any feelings at all.
One of the unfortunate consequences of depression is that it makes it difficult to maintain human relationships. Others find the sufferer boring, uninteresting or even frustrating to be around. The depressed person finds it difficult to do anything to help themselves, and this can anger those who try at first to help them, only to give up.
While depression initially can cause a sufferer to feel alone, often its effects on those around him can result in his actually being alone. This leads to another vicious cycle as the loneliness makes the depression worse.
When I started graduate school I was in a healthy state of mind at first, but what drove me over the edge was all the time I had to spend alone studying. It wasn’t the difficulty of the work – it was the isolation. At first my friends still wanted to spend time with me, but I had to tell them I didn’t have time because I had so much work to do. Eventually my friends gave up and stopped calling, and that’s when I got depressed. That could happen to anyone, but in my case it led to several weeks of acute anxiety that eventually stimulated a severe manic episode.
Perhaps you’re familiar with The Doors song “People are Strange” which neatly summarizes my experience with depression:
People are strange
When you’re a stranger,
Faces look ugly
When you’re alone,
Women seem wicked
When you’re unwanted,
Streets are uneven
When you’re down.
In the deepest parts of depression the isolation becomes complete. Even when someone makes the effort to reach out, you just cannot respond even to let them in. Most people don’t make the effort, in fact they avoid you. It is common for strangers to cross the street to avoid coming close to a depressed person.
Depression may lead to thoughts of suicide or obsessive thoughts of death in general. I have known depressed people to tell me in all seriousness that I would be better off if they were gone. There can be suicide attempts. Sometimes the attempts are successful.
One in five untreated manic depressives ends their lives at their own hands. (Also see here.) There is much better hope for those who seek treatment, but unfortunately most manic depressives are never treated – it is estimated that only one third of those who are depressed ever get treatment. In all too many cases the diagnosis of mental illness is made postmortem based on the memories of grieving friends and relatives.
If you come across a depressed person as you go about your day, one of the kindest things you can do for them is to walk right up, look them straight in the eye, and just say hello. One of the worst parts of being depressed is the unwillingness that others have to even acknowledge that I’m a member of the human race.
On the other hand, a manic depressive friend who reviewed my drafts had this to say:
When I am depressed I don’t want the company of strangers, and often not even the company of many friends. I wouldn’t go as far as to say I “like” being alone, but the obligation to relate to another person in some way is loathesome. I also become more irritable sometimes and find the usual ritual pleasantries unbearable. I only want interaction with people with whom I can really connect, and for the most part I don’t feel like anyone can connect with me at that point. I begin to feel like some subspecies of humankind and as such I feel repulsive and repulsed. I feel like people around me can literally see my depression as if it were some grotesque wart on my face. I just want to hide and drop into the shadows. For some reason, I find it a problem that people seem to want to talk to me wherever I go. I must give out some kind of vibe that I am approachable. When depressed my low profile and head-hanging demeanor is really meant to discourage people from approaching me.
Thus it is important to respect each individual, for the depressed as for everyone else.
The Strange Pill
This leads me to another odd experience I have had a number of times. Depression can often be treated quite effectively by drugs called antidepressants. What these do is increase the concentration of neurotransmitters in one’s nerve synapses, so signals flow more easily in one’s brain. There are many different antidepressants that do this via several different mechanisms, but they all have the effect of boosting one of the neurotransmitters, either norepinephrine or serotonin. (Imbalances in the neurotransmitter dopamine cause the schizoid symptoms.)
The problem with antidepressants is that they take a long time to take effect, sometimes as long as a couple of months. It can be hard to keep up hope while waiting for the antidepressant to start working. At first all one feels is the side effects – dry mouth (“cottonmouth”), sedation, difficulty in urinating. If you’re well enough to be interested in sex, some antidepressants have such side effects as making it impossible to have orgasms.
But after a while the desired effect begins to happen. And here is where I have the odd experiences: I don’t feel anything at first, the antidepressants don’t change my feelings or perceptions. Instead, when I take antidepressants, other people act differently towards me.
I find that people stop avoiding me, and eventually start to look directly at me and talk to me and want to be around me. After months with little or no human contact, complete strangers spontaneously start conversations with me. Women start to flirt with me where before they would have feared me.
This of course is a wonderful thing, and my experience has often been that it is the behaviour of others rather than the medicine that lifts my mood. But it is really strange to have others change their behaviour because I’m taking a pill.
Of course, what really must be happening is that they are reacting to changes in my behaviour, but these changes must be subtle indeed. If this is the case the behavioural changes must happen before there is any change in my own conscious thoughts and feelings, and when it starts to happen I cannot say that I’ve noticed anything different about my own behaviour.
While the clinical effect of antidepressants is to stimulate the transmission of nerve impulses, the first outward sign of their effectiveness is that one’s behaviour changes without one having any conscious knowledge of it.
One friend who is also a consultant who suffers from depression had the following to say about my experiences with antidepressants:
I’ve had the almost identical experience–not just in how PEOPLE treat me, but how the entire WORLD works. For instance, when I’m not depressed, I start getting more work, good things come to me, events turn out more positively. These things COULDN’T be reacting to my improved mood because my clients, for example, may not have talked to me for months prior to calling and offering me work! And yet, it truly does seem that when my mood looks up, EVERYthing looks up. Very mysterious, but I do believe there’s some kind of connection. I just don’t understand what it is or how it works.
Some people object to taking psychiatric medications – I did until it became clear I would not survive without them, and even for some years afterwards I wouldn’t take them when I was feeling well. One reason people resist taking antidepressants is that they feel they would rather be depressed than to experience artificial happiness from a drug. But that’s really not what’s happening when you take antidepressants. Being depressed is as much a delusional state as believing oneself to be the Emperor of France. You may be quite surprised to hear that and I was too the first time I read a psychologist’s statement that his patient sufferred from the delusion that life was not worth living. But depressive thought really is delusional.
It’s not clear what the ultimate cause of depression is, but its physiological effect is a shortage of neurotransmitters in the nerve synapses. This makes it difficult for nerve signals to be transmitted and has a dampening effect on much of your brain activity. Antidepressants increase the concentration of neurotransmitters back up to their normal levels so that nerve impulses can propagate successfully. What you experience when taking antidepressants is much closer to reality than what you experience while depressed.
A Risky Treatment
An unfortunate problem that antidepressants have for both manic depressives and schizoaffectives is that they can stimulate manic episodes. This makes psychiatrists reluctant to prescribe them at all even if the patient is sufferring terribly. My own feeling is that I would rather risk even psychotic mania than to have to live through psychotic depression without medication – after all, I’m not likely to kill myself while manic, but while depressed the danger of suicide is very real and thoughts of doing harm to myself are never far from my mind.
I had not been diagnosed when I took antidepressants for the first time (a tricyclic called amitryptiline or Elavil) and as a result I spent six weeks in a psychiatric hospital. That was the summer of 1985, after a year I had spent mostly crazy. That’s when I was finally diagnosed.
(I feel that it was irresponsible of the psychiatrist who prescribed my first antidepressant to not have investigated my history more thoroughly than she did, to see if I had ever experienced a manic episode. I had my first one a little less than a year before, but didn’t know what it was. Had she just described what mania was, and asked me if I had ever experienced it, a lot of trouble could have been avoided. While I think the antidepressant would still have been indicated, she could have prescribed a mood stabilizer which might have prevented the worst manic episode of my entire life, not to mention the ten thousand dollars I was fortunate to have my insurance company pay for my hospitalization.)
I find now that I can take antidepressants with little risk of getting manic. It requires careful monitoring in a way that wouldn’t be necessary for “unipolar” depressives. I have to take mood stabilizers (antimanic medication); presently I take Depakote (valproic acid), which was first used to treat epilepsy – many of the medicines used to treat manic depression were originally used for epilepsy. I have to do the best I can to observe my mood objectively, and see my doctor regularly. If my mood becomes unusually elevated I have to either cut back the antidepressant I take or increase my mood stabilizer, or both.
I’ve been taking imipramine for about five years. I think it is one of the reasons I do so well now, and it upsets me that many psychiatrists are unwilling to prescribe antidepressants to manic depressives.
Not all antidepressants work so well – as I said amitryptiline made me manic. Paxil did very little to help me, and Wellbutrin did nothing at all. There was one I took (I think it might have been Norpramine) that caused a severe anxiety attack – I only ever took one tablet and wouldn’t take any more after that. I did have good results from maprotiline in my early 20’s, but then decided to stop medication entirely for several years, until I got hospitalized again in the spring of 1994. I had a low-grade depression for several years after that (when I tried Wellbutrin and then Paxil). I wasn’t suicidal but I just lived a miserable existence. A couple of months after I started taking imipramine in 1998, life got good again.
You should not use my experience as a guide in choosing any antidepressants you might take. The effectiveness of each is a very individual matter – they are all effective for some people and ineffective for others. Really the best you can do is try one out to see if it works for you, and keep trying new ones until you find the right one. Most likely any that you try will help to some extent. There are many antidepressants on the market now, so if your medicine is not helping, it’s very likely that there is another that will.
What if Medicine Doesn’t Help?
There are people for which it seems no antidepressant will help, but they are rare, and for those who cannot be treated by antidepressants, it is very likely that electric shock treatment will help. I realize that’s a very frightening prospect and it is still controversial, but ECT (or electroconvulsive therapy) is widely regarded by psychiatrists as the safest and most effective treatment there is for the worst depression. Most effective because it works when antidepressants fail, and safest for the simple reason that it works almost immediately, so the patient is not likely to kill themselves while waiting to get better, as can happen while waiting for an antidepressant to yield some relief.
Those who have read such books as Zen and the Art of Motorcycle Maintenance and One Flew Over the Cuckoo’s Nest will understandably have a low regard for shock treatment. In the past shock treatment was poorly understood by those who administered it and I have no doubt that it has been abused as depicted in Kesey’s book.
Note: While you may have seen the Cuckoo’s Nest movie, it’s really worthwhile to read the book. The inner experience of the patients comes through in the novel in a way that I don’t think is possible in a motion picture.
It has since been found that the memory loss that Robert Pirsig describes in Zen and the Art of Motorcycle Maintenance can be largely avoided by shocking only one lobe of the brain at a time, rather than both simultaneously. I understand the untreated lobe retains its memory and can help the other one recover it.
A new procedure called Transcranial Magnetic Stimulation promises a vast improvement over traditional ECT by using pulsed magnetic fields to induce currents inside the brain. A drawback for ECT is that the skull is an effective insulator, so high voltages are required to penetrate it. ECT cannot be applied with much precision. The skull presents no barrier to magnetic fields, so TMS can be delicately and precisely controlled.
At the hospital back in ’85 I had the pleasure to meet a fellow patient who had once worked as a staff member at another psychiatric hospital some time before. He would give us the inside scoop on everything that was going on during our stay. In particular he had once assisted in giving ECT treatments, and said that at the time it was just starting to be understood how many times you could shock someone before, as he put it, “they wouldn’t come back”. He said you could safely treat someone eleven times.
(It actually seems to be common for those who have mental illness to work at psychiatric hospitals. “The Quiet Room” author Lori Schiller worked at one for a while, and even now teaches a class at one. A bipolar friend worked at Harbor Hills hospital in Santa Cruz when I knew him back in the mid-80’s. At her first job, Schiller managed to keep her illness a secret for some time until another staffer noticed her hands shaking. That’s a common side effect of many psychiatric medications, and in fact sometimes I take a drug called propanolol to stop the tremors I get from Depakote, which got so bad at one point that I couldn’t type on a computer keyboard.)
You’re probably wondering whether I have ever had ECT. I haven’t; antidepressants work well for me. Although I feel it is probably safe and effective, I would be very reluctant to have it, for the simple reason that I place such a high value on my intellect. I would have to be pretty convinced that I would be as smart afterwards as I am now before I would volunteer for shock treatment. I would have to know a lot more about it than I do now.
I’ve known several other people to have ECT, and it seemed to help them. A couple of them were fellow patients who were getting the treatment while we were in the hospital together, and the difference in their whole personalities from one day to the next was profoundly positive.
Coming Up: Schizoid Symptoms
In Part II, I will discuss the schizophrenic side of schizoaffective disorder, something that I have not felt comfortable to talk about much before, publicly or privately. I will cover auditory and visual hallucinations, dissociation and paranoia.
Finally in part III I will tell you what to do about mental illness – why it’s important to seek treatment, what therapy is all about, and how you can make a livable new world for yourself. I will conclude with an explanation of why I write so publicly about my illness and give a list of websites and books for further reading.
This article originally appeared on kuro5hin.org and is reprinted here by permission of the author.
Crawford, M. (2013). Living with Schizoaffective Disorder. Psych Central. Retrieved on July 6, 2015, from http://psychcentral.com/lib/living-with-schizoaffective-disorder/