Excuse the poor video quality here though the sound is fine. Not sure whether using the “selfie mode” on my iPhone made the video poor or what?? Anyone have suggestions? Anyhow I would love reactions to my reading below….(Just nothing obvious on how bad the vid quality is. I ALREADY know this! By the way, I made this for David H. and his project in the U.K. so that is why I referred to the Brits in it…
6:30pm this coming Wednesday evening Sept 13, 2017.
Please join us to listen and participate!
Please listen to this. You will find Cortland Pfeffers intro fascinating, and of course pamela as usual has much to say!
Here is a little new art to entice, just a small drawing i did while at fhe hostel in Boston during the Hearing Voices Congress. I hope to post that power point soon.
Am I opinionated or what? But someone has to SAY these things!!! Peace!
I did this chair tonight with drawing Vine charcoal I made in the grill. I peeled wild grape vine then roasted the pieces in wired-together tin box pierced with a nail to let out the gases, for an hour..Inside after that was nice black vine charcoal!
The Second piece is my drawing in progress of which I will try to post a few stages..I have not come anywhere near to finishing it! Nor do Have any idea what it will look like when done!
Psychiatric Disorders Associated With Epilepsy
Author: Fahad Salih Algreeshah, MD; Chief Editor: Jose E Cavazos, MD, PhD, FAAN, FANA, FACNS more…
Updated: Oct 28, 2013
The International League Against Epilepsy (ILAE) and the International Bureau for Epilepsy (IBE) define epilepsy as a disorder of the brain characterized by an enduring predisposition to generate epileptic seizures and by the biologic, cognitive, psychological, and social consequences of this condition. This association may reflect the anatomical and neurobiological source of both epileptic seizures and the behavioral manifestations.
Antiepileptic drugs (AEDs) can play a role in the genesis of psychiatric symptoms; on the other hand, some psychotropic medications can lower the seizure threshold and provoke epileptic seizures.
Indeed, there is a general agreement that the incidence of neurobehavioral disorders is higher in patients with epilepsy than in the general population, although some authors argue that this apparent overrepresentation is due to sampling errors or inadequate control groups. Many, but not all, authors also accept the proposition that the link between neurobehavioral disorders and temporal lobe or complex partial epilepsy is particularly strong.
Go to Epilepsy and Seizures for an overview of this topic. Additionally, go to Psychogenic Nonepileptic Seizures for complete information on this topic.
Factors in the relationship between epilepsy and behavioral disorders
Mechanisms for a relationship between epilepsy and behavioral disorders include the following:
Ictal neurophysiologic effects
Inhibition or hypometabolism surrounding the epileptic focus Secondary epileptogenesis
Alteration of receptor sensitivity
Secondary endocrinologic alterations
Primary, independent psychiatric illness Consequence of medical or surgical treatment Consequence of psychosocial burden of epilepsy
Multiple interacting biologic and psychosocial factors determine the risk for the development of either schizophreniform psychoses or major depression in patients with epilepsy, and
behavioral disorders in epilepsy have multiple risk factors and multifactorial etiologies. Role of the neurologist in the psychiatric management of patients with
As neurologists, we tend to focus on seizure control, and psychiatric comorbidities are often underestimated. Recognizing psychiatric manifestations is an area that needs improvement.
Once symptoms are identified, the following questions arise :
Are the symptoms related to the occurrence of seizures (preictal, ictal, postictal)?
Are the symptoms related to AEDs?
Is the onset of symptoms associated with the remission of seizures in patients who had previously failed to respond to AEDs?
Because of the phenomenology of epilepsy, the close association between epilepsy and psychiatry has a long history. The traditional approach to epilepsy care has been to focus on
the seizures and their treatment. Concentrating only on the treatment of the seizures, which occupy only a small proportion of the patient’s life, does not seem to address many of the issues that have an adverse impact on the quality of life of the patient with epilepsy.
Sackellares and Berent stated that comprehensive care of the epileptic patient requires “attention to the psychological and social consequences of epilepsy as well as to the control
Although undoubtedly important in the care of the patient with epilepsy, advances in neurologic diagnosis and treatment tended to obscure the behavioral manifestations of epilepsy until Gibbs drew attention to the high incidence of behavioral disorders in patients
with temporal lobe epilepsy.
Frequency of psychiatric disorders in patients with epilepsy
It is estimated that 2030% of patients with epilepsy have psychiatric disturbances.
Of patients with intractable complex partial seizures, 70% may have 1 or more diagnoses consistent with the Diagnostic and Statistical Manual of Mental Disorders, Revised Third Edition (DSMIIIR); 58% of these patients have a history of depressive episodes, 32% have
agoraphobia without panic or other anxiety disorder, and 13% have psychoses. The risk of psychosis in patients with epilepsy may be 612 times that of the general
population, with a prevalence of about 78%; in patients with treatmentrefractory temporal lobe epilepsy, the prevalence has been reported to range from 016%.
Differences in the rates may result from differences in the populations studied, time periods investigated, and diagnostic criteria.
The most common psychiatric conditions in epilepsy are depression, anxiety, and psychoses. [8, 9, 10, 11, 12, 13] (See the Table below.)
Table. Prevalence Rates of Psychiatric Disorders in Patients With Epilepsy and the General Population (2007 data) (Open Table in a new window)
The psychiatric symptoms characteristic of the neurobehavioral syndrome of epilepsy (ie, Morel syndrome) tend to be distinguished in the following ways:
Atypical for the psychiatric disorder Episodic
Psychotic disorders are severe mental disorders that cause abnormal thinking and perception. Psychotic individuals lose relation with reality. Symptoms generally described as either positive, such as hallucinations, delusions, and disorganized behaviors, or negative, such as diminished range of emotion, reduced speech, and inability to initiate and sustain goaldirected activities.
Vuilleumier and Jallon found that 29% of patients with epilepsy have psychotic disorders. Perez and Trimble reported that about half of epileptic patients with psychosis could be
diagnosed with schizophrenia.
The etiology and pathogenesis of psychosis in epilepsy are poorly understood; however, neuroanatomical changes have been observed in patients with psychosis and include the following:
Asymmetry of amygdala and anterior segment of the hippocampus 
Rule of hippocampalamygdala complex in pathogenesis of schizophrenia 
Smaller gray matter volume in the left and middle temporal gyri and left posterior superior temporal gyrus 
Patients With Epilepsy
Major depressive disorder
Rule of bilateral middle frontal gyrus (prefrontal cortex) in overt psychosis occurring with schizophrenia 
Superior temporal cortex and dysfunction of corollary discharges in auditory hallucination 
Patients with temporal lobe epilepsy and psychosis of epilepsy have significantly smaller brain volume than people with temporal lobe epilepsy alone, and psychosis of epilepsy is a
distinct nosologic entity differing from schizophrenia.
Kanner states that various classifications have been proposed for the psychoses associated with epilepsy. He asserts that for the neurologist, the most useful might be that which distinguishes among psychoses closely linked to seizures (ictal or postictal psychosis), those linked to seizure remission (alternative psychosis), psychoses with a more stable and chronic course (eg, interictal psychosis), and iatrogenic psychotic processes related to antiepileptic
Status epilepticus (ie, complex partial status epilepticus and absence status epilepticus) can mimic psychiatric disorders, including psychosis.
So and colleagues distinguished between postictal psychosis, which is characterized by well systematized delusions and hallucinations in a setting of preserved orientation and alertness, as well as postictal confusion. They also distinguished between selflimited postictal
psychosis and the unremitting chronic interictal psychosis seen in longstanding epilepsy. Criteria proposed by Stagno for postictal psychosis include the following :
Psychotic or other psychiatric symptoms occur after a seizure or, more frequently, a series of seizures, after a lucid interval, or within 7 days of the seizure(s)
The event may be psychosis, depression, or elation or may be an anxietyrelated symptom
The event is timelimited, lasting days or, rarely, weeks; no significant clouding of consciousness occurs
Logsdail and Toone believe that clouding of consciousness, disorientation, or delirium may be noted, and, if consciousness is unimpaired, delusions and hallucinations are present; a
mixture of both also may be noted.
Clouding should not be attributed to other medical or psychiatric causes (eg, drug
intoxication, complex partial status epilepticus, metabolic disturbance).
Interictal psychotic phenomena, particularly hallucinations and delusions, are common in patients with epilepsy.[26, 27, 28]
Although many etiologies of psychosis in epilepsy have been proposed, the significance of such factors as the type of seizure, epilepsy classification, lateralization of foci, and age at
onset of epilepsy remains uncertain.[29, 30, 31, 32]
Tarulli et al documented cases of patients who had multiple episodes of postictal psychosis
before developing interictal psychosis. They concluded that a progression from postictal to interictal psychosis may be at play and that increased awareness and prompt treatment of postictal psychosis may inhibit or prevent the development of some instances of interictal psychosis.
Factors in the development of psychosis
The following variables are believed to have particularly strong links to the development of psychotic phenomena in patients with epilepsy:
Family history of psychosis Patients who had a positive family history of psychosis were extremely susceptible to psychosis, so a genetic factor appears to be involved Age at onset of epilepsy Patients with interictal psychosis showed a significantly
earlier onset of epilepsy [34, 35, 36, 37, 38]
Type of seizure The existence of complex partial seizure (mostly temporal lobe
epilepsy) may be strongly associated with interictal psychoses [39, 40]
Intelligence Patients with borderline intellectual functioning tend to develop psychotic symptoms relatively frequently [34, 35]
The risk factors for developing psychosis in epilepsy found in some studies also include the following :
Partial complex seizures, especially with temporal lobe foci The presence of “alien tissue” (eg, small tumors, hamartomas) Mesial temporal lobe gangliogliomas
Lefthandedness, especially in women
With regard to the first item above, some authors have noted a predominance of leftsided foci. Frontal lobe epilepsy is also common.
Schmitz et al studied risk factors and classified them by the following system:
Earlier onset of epilepsy
More severe epilepsy
Disturbed family background
Lack of interpersonal relationships
More frequent temporal lobe and unclassifiable epilepsies and less frequent generalized epilepsies
With regard to the last item above, no significant differences in types of epilepsies between patients with epilepsy and psychosis and patients with epilepsy without psychiatric disease have been found.
Trimble and Schmitz believe that the conclusions presented in the literature on risk factors are highly controversial.
In a review study of patients with epilepsy who developed psychosis, Tandon and DeQuardo found that the patients’ psychoses were usually a form of schizophrenia, most commonly
Stagno reported that persistent interictal psychoses of epilepsy and the schizophrenialike
psychoses of epilepsy are distinguishable from schizophrenia in the traditional psychiatric sense by the following :
Lack of negative symptoms of schizophrenia, particularly flattening of affect and personality deterioration
Better premorbid personality
Delusions of reference
More benign and variable course
Status epilepticus and ictal abnormalities are treated in the same way as nonpsychiatric epileptic events. Postictal events are treated by improving seizure control.
So et al believe that postictal psychosis remits spontaneously even without treatment but that
the use of effective neuroleptics may shorten the duration. Interictal psychosis is treated with antipsychotic drugs. Medications that lower the seizure threshold should be avoided. Some studies indicate that risperidone, molindone, and fluphenazine may have better profiles than older antipsychotic medications; clozapine has been reported to confer a particularly high risk of seizures.
Treatment of any of the psychoses of epilepsy should take into consideration the phenomenon termed forced normalization, which is a concept described by Landolt in the 1950s. When the electroencephalogram (EEG) in psychotic patients is normalized, often with anticonvulsant medicines, the psychiatric problem worsens.
Alternative psychosis, or antagonism between seizures and behavioral abnormalities (ie, worsening of behavior with improvement in seizure control), is a similar phenomenon that has been known for a longer time. Forced normalization frequently is described in patients treated
with ethosuximide; anecdotally, however, forced normalization effects have been produced by treatment with most antiepileptic agents, including the newer agents. The mechanism underlying these interesting phenomena is not yet understood. Many authors consider the idea of forced normalization to be somewhat controversial.
Bipolar Affective Disorders
Bipolar affective disorder is chronic psychiatric disease with severe changes in mood with a wide spectrum of clinical manifestations. A number of studies have demonstrated that affective disorders in epilepsy represent a common psychiatric comorbidity; however, most of
the neuropsychiatric literature focuses on depression, which is actually prominent. The incidence of developing bipolar affective disorder in epilepsy is 1.69 cases per 1000
personsyear, compared with 0.07 in the general population.
Bipolar symptoms were 1.62.2 times more common in subjects with epilepsy than with migraine, asthma, or diabetes mellitus and are 6.6 times more likely to occur than in healthy subjects. A total of 49.7% of patients with epilepsy who screened positive for bipolar symptoms were diagnosed with bipolar disorder by a physician, nearly twice the rate seen in
Depression is a mental state or chronic mental disorder characterized by feelings of sadness, loneliness, despair, low selfesteem, and selfreproach. Accompanying signs include psychomotor retardation (or, less frequently, agitation), withdrawal from social contact, and vegetative states, such as loss of appetite and insomnia.
Depression is the most frequent psychiatric comorbidity seen in patients with epilepsy. It is more likely to occur in patients with partial seizure disorders of temporal and frontal lobe
origin. It is also more frequent in patients with poorly controlled seizures.
Two possibilities exist: (1) depression is a reaction to the epilepsy or (2) depression is a part
of the epilepsy.
Mendez et al compared patients with epilepsy to matched controls without epilepsy but with a similar degree of disability from other chronic medical diseases and found that while 55% of the patients with epilepsy reported depression, only 30% of the matched controls reported
Mendez et al concluded that depression is related to a specific epileptic psychosyndrome.
On the other hand, Robertson concluded that with few exceptions, the phenomenology of the depression to a large degree is not attributed to neuroepilepsy variables; however, not all
studies have found this difference.
In patients with refractory epilepsy, the presence of depression is one of the most important variables to have an impact on their quality of life, even more than the frequency and severity of the seizures.
Several studies have documented that the quality of life improves significantly in patients with epilepsy who are made seizure free. If those patients are excluded, Boylan et al have found
that the quality of life is related to depression but not to degree of seizure control. Despite its high prevalence in patients with epilepsy, depression very often remains
unrecognized and untreated. The reasons for clinicians’ failure to recognize depressive disorders in patients with epilepsy include the following :
Patients tend to minimize their psychiatric symptoms for fear of being further stigmatized
The clinical manifestations of certain types of depressive disorders in epilepsy differ from depressive disorders in patients without epilepsy and therefore are not recognized by physicians
Clinicians usually fail to inquire about psychiatric symptoms
Patients and clinicians tend to minimize the significance of symptoms of depression because they consider them to be a reflection of a normal adaptation process to this
chronic disease 
The concern that antidepressant drugs may lower the seizure threshold has generated among clinicians a certain reluctance to use psychotropic drugs in patients with epilepsy
Risk factors for the development of depression in patients with epilepsy include the following:
Temporal lobe (but not frontal lobe) partial complex seizures Vegetative auras
Family history of psychiatric illness, particularly depression Laterality effects, which are controversial
Physiologic factors associated with epilepsy and depression
Decreased serotonergic, noradrenergic, and GABAergic functions have been identified as pivotal etiologic mechanisms in depression and have been the basis for antidepressant
pharmacologic treatments. Decreased activity of these same neurotransmitters has been shown to facilitate the kindling process of seizure foci, to exacerbate seizure severity, and to intensify seizure predisposition in some animal models of epilepsy.
Therefore, parallel changes of serotonin, norepinephrine, dopamine, and GABA may be operant in the pathophysiology of depressive disorders and epilepsy. Jobe et al have presented evidence that some types of depression and some types of epilepsy may be
associated with decreased noradrenergic and serotonergic transmission in the brain. FlorHenry speculated that depression might be related to right (nondominant) foci, a finding
confirmed by a few other investigators.
Some authors have suggested that elation is associated with rightsided lesions and depression or sadness with leftsided lesions. Most studies that find a relationship between laterality and depression have found depression to be more common with leftsided foci.
LopezRodriguez et al found that major depressive episodes were statistically more frequent in patients with left temporal lobe seizures than in patients with right temporal lobe seizures. 
Other authors report no laterality differences in depression rates.
Other factors associated with depression in epilepsy
One of the variables linking depression and epilepsy is a family history of depression.
A greater frequency of depression has been found in patients with seizures originating in limbic structures; also, a frontal lobe dysfunction has been associated with depression.
The quality of life is often suboptimal for patients with epilepsy, and this may adversely affect mood.[58, 59, 60, 61, 62]
Increased financial stress, life stressors, and poor adjustment to seizures are predictive of increased depression.
The lack of control over the illness may be an additional risk factor for depression.[64, 65]
Depression in epilepsy may also result from iatrogenic causes (pharmacologic and surgical).
The AEDs most frequently associated with iatrogenic depressive symptoms include the following :
Phenobarbital Primidone Vigabatrin Levetiracetam Felbamate Topiramate
Depressive disorder can also occur following the discontinuation of AEDs with positive psychotropic properties, such as carbamazepine, oxcarbazepine, valproic acid, and lamotrigine.
Frequency of depression in epilepsy
In patients with epilepsy, the reported rates of depression range from 848% (mean 29%, median 32%); the prevalence of depression in the general population ranges in different
epidemiologic studies from 617%.
In a study of patients with epilepsy who were admitted to a psychiatric hospital, Betts found
that depression was the most common psychiatric diagnosis.
Williams studied 2000 patients with epilepsy and found that depressed mood was part of the attack in 21. According to Williams, depressed mood was the second most common emotion
constituting part of the attack, with fear being the most common. Others have found similar results.
Characteristics of depression in patients with epilepsy
Characteristics of patients with epilepsy who also have depression include the following:
Fewer neurotic traits
More psychotic traits
Higher trait and state anxiety scores
More abnormal affect and chronic dysthymic disorder High hostility scores, especially for selfcriticism and guilt Sudden onset and brief duration of symptoms
Perhaps 1020% of persons with epilepsy have a periictal prodrome consisting of depressedirritable mood, sometimes with anxiety or tension and headaches. Although Williams noted in his patients that the mood disturbance would persist for 1 hour to 3 days
after the ictus, postictal affective syndromes have received little attention in the literature. Blumer has defined an interictal dysphoric disorder in patients with epilepsy in which
symptoms tend to be intermittent.
On average, the patients tend to have 5 of the following symptoms (range 38):
Depressed mood Anergia
Paroxysmal irritability Euphoric moods
Kanner has noted that the symptoms of depression in patients with epilepsy are different from those in patients without epilepsy. He believes that patients with epilepsy who are felt to warrant antidepressant therapy often do not meet formal DSM criteria for a mood disorder and concludes that the problem of depression in epilepsy may be underestimated by using
screening instruments designed for use in psychiatric patients.
Kanner continued with this research using the DSMIV criteria. Most symptoms presented with a waxing and waning course, with symptomfree periods. He referred to this form of depression as “dysthymiclike disorder of epilepsy.”
Caplan et al believe that depression in children and adolescents with epilepsy tends to have a different presentation from that seen in adults with epilepsy, although some adolescents with depression may present with a syndrome similar to that seen in adults. They reported that children with depression often do not appear sad and that the depression may be
manifested by the following :
Irritability Oppositionality Aggression Anger
For this reason, special instruments are used to assess depression in children.
ThomeSouza et al reported that depression in children with epilepsy may be underdiagnosed and untreated for longer periods than in adults. They found that 70.5% of children and adolescents in the study had psychiatric disorders and that the most frequent psychiatric disorder in children was attentiondeficit/hyperactivity disorder (ADHD) and the most frequent psychiatric disorder in adolescents was depression. They found that family
history was also an important determinant in mood disorders in children and adolescents.
Preictal symptoms of depression
Categorizing depression in patients with epilepsy as depression occurring periictally (preictally, ictally, or postictally) and interictally may be useful.
Preictal symptoms of depression are believed to present as symptoms of irritability, poor frustration tolerance, motor hyperactivity, and aggressive behavior in children with epilepsy.
However, very few studies have been performed in the literature.
Ictal symptoms of depression
Ictal symptoms are the clinical expression of a simple partial seizure. Psychiatric symptoms occur in approximately 25% of auras. The most frequent symptoms include feelings of
anhedonia, guilt, and suicidal ideation.
Postictal symptoms of depression
Postictal symptoms of depression have been recognized for a long time, but they have been poorly studied in a systematic manner.
Interictal symptoms of depression
For patients with epilepsy to experience depressive episodes that fail to meet any of the DSMIVTR criteria is not unusual. Kraepelin and Bleuler were the first to describe affective symptoms of prominent irritability, intermixed with euphoric mood, fear, and symptoms of
anxiety, as well as anergia, pain, and insomnia.[76, 77, 78]
In 1986, Mendez et al used the term atypical depression in epilepsy patients using the DSM
The treatment of mood disorders in patients with epilepsy includes reevaluation of the anticonvulsant regimen, cautious but aggressive use of antidepressants, and psychotherapy.
First and foremost, treatment involves seizure control with appropriate anticonvulsant therapies. A phenomenon analogous to alternative psychosis, worsening of behavior with better seizure control, has been reported in epilepsyassociated mood disorders.
There is evidence that some anticonvulsant therapies, including vagus nerve stimulation, valproate, gabapentin, carbamazepine, and lamotrigine, also have antidepressant effects and may prove effective in treating depression in patients with epilepsy. Phenobarbital is known to produce depression.
According to Schmitz, vigabatrin has been linked to psychoses and to major depression, and phenytoin has been associated with toxic encephalopathies.
McConnell and Duncan cite some patients in whom phenytoin had been linked to depression and mania. A case has been made that the GABAergic drugs may be associated with an
increased incidence of psychiatric problems.
However, antidepressants may be necessary to effectively treat depression in these patients. When an antidepressant is prescribed, the epileptogenic potential, adverse effects, and drug interactions must be evaluated. Selective serotonin reuptake inhibitors (SSRIs) such as citalopram (owing to its lack of drug interactions) and multireceptoractive compounds such as nefazodone or venlafaxine are suggested as firstline treatments. Bupropion, maprotiline, and clomipramine should be avoided.
Virtually all non–monoamine oxidase inhibitor (MAOI) antidepressants have been reported to lower the seizure threshold. In the treatment of epilepsyrelated depression, priority should be given to optimizing seizure control, since improved psychosocial functioning tends to accompany seizure remission. Antidepressants may manifest convulsant and anticonvulsant effects. Maprotiline and amoxapine have the greatest seizure risk; doxepin, trazodone, and fluvoxamine appear to have the lowest risk.
Electroconvulsive therapy is not contraindicated and may prove effective for epilepsy patients with severe, treatmentresistant, or psychotic depression.
It is imperative that depression be recognized and treated in patients with epilepsy. Further prospective studies of new treatment options for depression in this patient population are
In a carefully selected series of patients with epilepsy, Williams found that only 165 of 2000 patients had complex, including emotional, ictal experiences.
Of those 165 patients, only 3 described elation. Mania and hypomania are rare in association with epilepsy.
Manicdepressive illness is also rare; of 66 patients with epilepsy and major depression, only 2 had bipolar disorder. This rarity is probably, to some degree, secondary to the antimanic effect of drugs such as carbamazepine and valproate. However, mania was uncommonly associated with epilepsy even before the use of modern antiepileptic drugs.
Suicidality (completed suicide, suicide attempt, and suicidal ideation) is significantly more frequent among people with epilepsy than in the general population.[81, 83, 84, 85, 86, 87]
The risk of suicide in the general population averages about 1.4%. Depression is one of the psychiatric disorders that increases the risk of suicide. The risk of suicide in depressed patients is believed to be around 15%.
On average, the risk of suicide in patients with epilepsy is about 13% (prevalence rate ranges from 510 times that of the general population). Although some authors question its methodological and patient selection techniques, most authors cite Barraclough’s meta analysis, which revealed that the risk of suicide in patients with temporal lobe epilepsy is
increased to as much as 25fold that of the general population.
Even so, depression remains underrecognized and untreated. The relationship between
epilepsy and suicidality is complex and multifactorial.
Psychiatric adverse events, including symptoms of depression and anxiety, have been reported with the use of several AEDs, particularly barbiturates (phenobarbital and
primidone), topiramate, tiagabine, zonisamide, vigabatrin, and levetiracetam.[89, 90, 91, 92]
The incidence of suicidal phenomena linked to specific AEDs has not been systematically well studied. These data may either reflect the natural course of an underlying, recurrent psychiatric illness with no real effect from AEDs or could suggest that AEDs lower the threshold for manifesting psychiatric symptoms in individuals who are vulnerable because of a genetic or historical predisposition to psychiatric disorders.
Frequent risks associated with suicidality include the following :
Current or past history of mood and anxiety disorders
Family psychiatric history of mood disorders, particularly of suicidal behavior Past suicidal attempts
In January 2008, the US Food and Drug Administration (FDA) issued an alert regarding the association between suicidality and AEDs, having concluded that there was a statistically significant, 1.8fold increased risk of suicidality with exposure to AEDs. This conclusion was based on the results of a metaanalysis that included data from 199 randomized clinical trials of 11 AEDs: carbamazepine, felbamate, gabapentin, lamotrigine, levetiracetam, oxcarbazepine, pregabalin, tiagabine, topiramate, valproate, and zonisamide. The meta analysis encompassed 43,892 patients treated for epilepsy, psychiatric disorders, and other disorders, predominantly pain.
In the study, suicidality occurred in 4.3 of 1,000 patients treated with AEDs in the active arm, compared with 2.2 of 1,000 patients in the comparison arm. The results of this metaanalysis
must be considered with great caution, and more research is necessary.[81, 93, 94]
The FDA has decided to insert suicide warnings in the package inserts of all AEDs; thus,
physicians need to identify patients with increased risk of suicide. Anxiety Disorders
Anxiety is an experience of fear or apprehension in response to anticipated internal or external danger, accompanied by muscle tension, restlessness, sympathetic hyperactivity, and/or cognitive signs and symptoms (hypervigilance, confusion, decreased concentration, or fear of losing control).
Anxiety is common in patients with epilepsy; of 49 patients with epilepsy attending a tertiary epilepsy care center, 57% had highlevel anxiety.
Anxiety in patients with epilepsy can be ictal, postictal, or interictal.
GABA is the most important inhibitory transmitter in the central nervous system. Evidence suggests that the abnormal functioning of GABA receptors could be of great importance in
the pathophysiology of epilepsy and anxiety disorders.[82, 81]
Differentiating between spontaneous fear and reactive fear (ie, reaction to the knowledge that a seizure may occur) can be difficult. Panic disorder can produce paroxysmal symptoms, which can be confused with epileptic events and may go unrecognized in patients with epilepsy. Anxiety also may be related to nonepileptic attack disorder.
Symptoms of anxiety in epilepsy
Symptoms of anxiety in epilepsy may result or be exacerbated by psychological reactions, including responses to the unpredictability of seizures and restrictions of normal activities.
This results in low selfesteem, stigmatization, and social rejection.[1, 83, 84] According to Goldstein and Harden, epileptic events can produce symptoms indistinguishable from those
of primary anxiety disorder.
Fear and anxiety are often associated with simple partial seizures. Torta and Keller estimated that fear occurs as an aura in as many as 15% of patients, and Goldstein and Harden concluded from several studies that fear is one of the most common ictal emotions.
Ictal anxiety symptoms manifest as fear or panic, sometimes with other characteristics of temporal discharges, such as depersonalization and déjà vu, as well as other psychological
and autonomous phenomena.[1, 86]
Anxiety in association with type of epilepsy and frequency of seizures
The highest rates of psychiatric comorbidities, including anxiety, are reported in patients with chronic, refractory seizure disorders.[1, 83, 86, 87]
Interestingly, however, Goldstein et al found that patients with epilepsy with high seizure frequency had lower anxiety scores than did patients with lower seizure frequency.
The risk of anxiety is higher in focal (more frequent in temporal lobe) epilepsy than in generalized epilepsy. In patients with temporal lobe epilepsy, Trimble et al reported that 19% of the patients were diagnosed with anxiety and 11% were diagnosed with depression.
Edeh and Toone found that patients with temporal lobe epilepsy scored higher for anxiety than did those with focal, nontemporal lobe epilepsy.
Anxiety can also be seen in frontal lobe epilepsy.
Ictal and interictal anxiety
Anxiety in epileptic patients may occur as an ictal phenomenon, as normal interictal emotion or as part of an accompanying anxiety disorder, as part of an accompanying depressive disorder, or in association with nonepileptic, seizurelike events as part of an underlying primary anxiety disorder.
Interictal anxiety has a great influence on the quality of life of patients, since most of them have a permanent fear of new discharges. Torta and Keller have estimated that as many as 66% of patients with epilepsy report interictal anxiety. Goldstein and Harden proposed 2 major psychological mechanisms for this, as follows:
Fear of seizure recurrence (seizure phobia) Issues surrounding locus of control
They concluded that documented cases of actual seizure phobia are rare but that a sense of dispersed locus of control can cause profound problems in patients with epilepsy.
Several studies have shown that pregabalin, used as an adjunct for partial seizures, has been an effective, rapidly active, and safe treatment for generalized anxiety disorder.
Although, as shown above, studies looking into the association between anxiety and epilepsy have been performed, because of the difficulty in separating the anxiety that accompanies a chronic disease from pathologic anxiety, studies investigating anxiety in epilepsy have nonetheless been relatively few.
Personality disorders in epileptic patients can cause abnormal behavior that can have a direct impact on seizure control and quality of life. The question of the relationship has a long history and remains controversial. In 1975, Woxman and Geschwind described a syndrome consisting of circumstantiality (excessive verbal output, stickiness, and hypergraphia), altered sexuality, and intensified mental life in a patient with temporal lobe epilepsy. It was called
Bensan and Herman reported that data are insufficient to state with certainty that a consistent pattern of behavioral changes occur in patient with temporal lobe epilepsy. The complex partial epilepsy should not be diagnosed on the basis of the presence of Geschwind
syndrome without any paroxysmal episodes that can be proven to be epileptic.
The link of personality disorders to epilepsy was not only seen in temporal lobe epilepsy. Trinka et al found that personality disorders were present in 23% of patients with juvenile
Trimble has summarized the data and concluded that the personality profile of a patient with epilepsy can be explained by a complex combination of the effect of (1) dealing with a chronic illnesses, (2) AED effects, (3) and temporal lobe pathology. He supported that certain personality disturbances in epilepsies should be viewed as associated with cerebral
abnormalities that also lead to seizures. AttentionDeficit/Hyperactivity Disorder
Attentiondeficit/hyperactivity disorder (ADHD) is another psychiatric comorbidity in patients with epilepsy and is more common in children. The cooccurrence may result from altered neurobiological mechanisms involved in early brain development.
The incidence of ADHD is about 7.76 cases per 1000 personyears in patients with epilepsy and 3.22 in patients without epilepsy. The incidence of epilepsy is 3.24 cases per 1000
personyear in patient with ADHD and 0.78 in those without ADHD.
A neuropsychiatrist may find difficulty in differentiating impaired attention secondary to
absence of seizure and attention deficit as a phenotypical representation of ADHD.
Many AEDs can cause symptoms mimic ADHD, and the most common implicated are the GABAergic drugs such as barbiturates, benzodiazepines, and vigabatrin.
Methylphenidate can cause aggravate seizures in patients with ADHD, although generally it is considered safe in those who are seizure free.
Psychotropic Effects of Antiepileptic Drugs
Knowledge about the psychotropic effects of AEDs is crucial and yet very limited in the epilepsy population. Evidence suggests that lamotrigine and the vagal nerve stimulator may have antidepressant properties that could be of use in light of common comorbid depression.
Carbamazepine, valproate, lamotrigine, and possibly oxcarbazepine may have mood stabilizing properties. Gabapentin, pregabalin, and tiagabine may have anxiolytic benefits.
There is a risk of depression related to barbiturates and topiramate, and possibly to phenytoin. Underlying depression and anxiety symptoms may be exacerbated by levetiracetam, while psychotic symptoms, albeit rare, have been reported with topiramate,
levetiracetam, and zonisamide.
Psychiatric Disorders and Epilepsy Surgery
Generally, psychiatric outcomes improve or no changes are noted with epilepsy surgery. A history of psychiatric disorders before epilepsy surgery is associated with poorer chance of postsurgical seizure remission. After resective surgery, only patients with good or excellent seizure control had sustained longterm improvement in mood.
Postsurgical patients had higher suicidal mortality rate compared with the general population, and people who continue to have seizures after surgery had a higher suicidal mortality rate,
in contrast to those who were seizure free after surgery (45 times). In a series of 26 patients, gamma knife radiosurgery for mesial temporal lobe epilepsy showed no significant
psychiatric changes from preoperative baseline for up to 24 months.
The risk factors for depression after epilepsy surgery include preoperative history of mood
disorders and mesial temporal lobe surgery.
Disturbed behavior may interfere with the preoperative evaluation, and the patient may not be able to provide informed consent for investigation and surgery.
Vagus nerve stimulation showed better responses in patients with chronic major depressive
disorders over 12 months of study.[98, 99] In small studies, Elger et al and Harden et al showed that treatment with vagal nerve stimulation improves depression in epileptics independent of effects on seizure frequency. Vagal nerve stimulation is a useful therapeutic
tool in treatmentresistant depression. Patient and Family Education
For patient education information, see Epilepsy, Depression, Schizophrenia, Bipolar Disorder, and Anxiety.
The following Web sites are useful patient and family education tools:
American Epilepsy Society
Centers for Disease Control and Prevention, Epilepsy
Epilepsy Foundation, Communities
Medline Plus, Epilepsy
National Institute of Neurological Disorders and Stroke, NINDS Epilepsy Information Page
Psychiatric comorbidities in patients with epilepsy are relatively frequent. Despite the high prevalence rates, few data are available. Because of this, the data used are from primary psychiatric disorders, assuming it can be applicable to patients with epilepsy.
Early recognition and management of psychiatric disorders in patients with epilepsy is extremely important, because it improves the quality of life, decreases suicidality, and aids in better seizure control.
Contributor Information and Disclosures
Fahad Salih Algreeshah, MD Head of Neurology Unit, Department of Medicine, King Saud Medical City
Disclosure: Nothing to disclose.
Selim R Benbadis, MD Professor, Director of Comprehensive Epilepsy Program, Departments of Neurology and Neurosurgery, Tampa General Hospital, University of South Florida College of Medicine
Selim R Benbadis, MD is a member of the following medical societies: American Academy of Neurology, American Academy of Sleep Medicine, American Clinical Neurophysiology Society, American Epilepsy Society, and American Medical Association
Disclosure: UCB Pharma Honoraria Speaking, consulting; Lundbeck Honoraria Speaking, consulting; Cyberonics Honoraria Speaking, consulting; Glaxo Smith Kline Honoraria Speaking, consulting; Sleepmed/DigiTrace Honoraria Consulting; Sunovion Consulting fee None; Supernus Speaking, consulting; UpsherSmith Grant/research funds None
Specialty Editor Board
Andrew S Blum, MD, PhD Director, Adult Epilepsy and EEG Laboratory, Comprehensive Epilepsy Program, Rhode Island Hospital; Associate Professor of Neurology, The Warren Alpert Medical School of Brown University
Andrew S Blum, MD, PhD is a member of the following medical societies: American Academy of Neurology, American Epilepsy Society, and Massachusetts Medical Society
Disclosure: Nothing to disclose.
Francisco Talavera, PharmD, PhD Adjunct Assistant Professor, University of Nebraska Medical Center College of Pharmacy; EditorinChief, Medscape Drug Reference
Disclosure: Medscape Salary Employment
Jose E Cavazos, MD, PhD, FAAN, FANA, FACNS Professor with Tenure, Departments of Neurology, Pharmacology, and Physiology, Assistant Dean for the MD/PhD Program, Program Director of the Clinical Neurophysiology Fellowship, University of Texas School of Medicine at San Antonio; CoDirector, South Texas Comprehensive Epilepsy Center, University Hospital System; Director, San Antonio Veterans Affairs Epilepsy Center of Excellence and Neurodiagnostic Centers, Audie L Murphy Veterans Affairs Medical Center
Jose E Cavazos, MD, PhD, FAAN, FANA, FACNS is a member of the following medical societies: American Academy of Neurology, American Clinical Neurophysiology Society, American Epilepsy Society, American Neurological Association, and Society for Neuroscience
Disclosure: LGCH, Inc Ownership interest Consulting
Pedro E HernandezFrau, MD Clinical Neurophysiology Fellow, Department of Neurology, Tampa General Hospital, University of South Florida College of Medicine
Pedro E HernandezFrau, MD is a member of the following medical societies: American Academy of Neurology
Disclosure: Nothing to disclose.
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Medscape Reference © 2011 WebMD, LLC
From KEVINMD.COM and Steve Balt’s WONDERFUL ThoughtBroadcast.com
Why I’m not sure that psychiatric medications work
I have a confession to make. I don’t think what I do each day makes any sense.
Perhaps I should explain myself. Six months ago, I started my own private psychiatry practice. I made this decision after working for several years in various community clinics, county mental health systems, and three academic institutions. I figured that an independent practice would permit me to be a more effective psychiatrist, as I wouldn’t be encumbered by the restrictions and regulations of most of today’s practice settings.
My experience has strengthened my long-held belief that people are far more complicated than diagnoses or “chemical imbalances”—something I’ve written about on this blog and with which most psychiatrists would agree. But I’ve also made an observation that seems incompatible with one of the central dogmas of psychiatry. To put it bluntly, I’m not sure that psychiatric medications work.
Before you jump to the conclusion that I’m just another disgruntled, anti-medication psychiatrist who thinks we’ve all been bought and misled by the pharmaceutical industry, please wait. The issue here is, to me, a deeper one than saying that we drug people who request a pill for every ill. In fact, it might even be a stretch to say that medications never work. I’ve seen antidepressants, antipsychotics, mood stabilizers, and even interventions like ECT give results that are actually quite miraculous.
But here’s my concern: For the vast majority of my patients, when a medication “works,” there are numerous other potential explanations, and a simple discussion may reveal multiple other hypotheses for the clinical response. And when you consider the fact that no two people “benefit” in quite the same way from the same drug, it becomes even harder to say what’s really going on. There’s nothing scientific about this process whatsoever.
And then, of course, there are the patients who just don’t respond at all. This happens so frequently I sometimes wonder whether I’m practicing psychiatry wrong, or whether my patients are playing a joke on me. But no, as far as I can tell, I’m doing things right: I prescribe appropriately, I use proper doses, and I wait long enough to see a response. My training is up-to-date; I’ve even been invited to lecture at national conferences about psychiatric meds. I can’t be that bad at psychiatry, can I?
Probably not. So if I assume that I’m not a complete nitwit, and that I’m using my tools correctly, I’m left to ask a question I never thought I’d ask: Is psychopharmacology just one big charade?
Maybe I feel this way because I’m not necessarily looking for medications to have an effect in the first place. I want my patients to get better, no matter what that entails. I believe that treatment is a process, one in which the patient (not just his or her chemistry) is central. When drugs “work,” several factors might explain why, and by the same token, when drugs don’t work, it might mean that something else needs to be treated instead—rather than simply switching to a different drug or changing the dose. Indeed, over the course of several sessions with a patient, many details inevitably emerge: persistent anxiety, secretive substance abuse, a history of trauma, an ongoing conflict with a spouse, or a medical illness. These often deserve just as much attention as the initial concern, if not more.
Although our understanding of the pathophysiology of mental illness is pure conjecture, prescribing a medication (at least at present) is an acceptable intervention. What happens next is much more important. I believe that prescribers should continue to collect evidence and adjust their hypotheses accordingly. Unfortunately, most psychopharmacologists rarely take the time to discuss issues that can’t be explained by neurochemistry (even worse, they often try to explain all issues in terms of unproven neurochemistry), and dwindling appointment times mean that those who actually want to explore other causes don’t have the chance to do so.
So what’s a solution? This may sound extreme, but maybe psychiatry should reject the “biochemical model” until it’s truly “biochemical”—i.e., until we have ways of diagnosing, treating, and following illnesses as we do in most of the rest of medicine. In psychiatry, the use of medications and other “somatic” treatments is based on interview, gut feeling, and guesswork—not biology. That doesn’t mean we can’t treat people, but we shouldn’t profess to offer a biological solution when we don’t know the nature of the problem. We should admit our ignorance.
It would also help to allow (if not require) more time with psychiatric patients. This is important. If I only have 15-20 minutes with a patient, I don’t have time to ask about her persistent back pain, her intrusive brother-in-law, or her cocaine habit. Instead, I must restrict my questions to those that pertain to the drug(s) I prescribed at the last visit. This, of course, creates the perfect opportunity for confirmation bias—where I see what I expect to see.
We should also make an effort to educate doctors and patients alike about how little we actually know. The subjects in trials to obtain FDA approval do NOT resemble real-world patients and are not evaluated or treated like real-world patients (and this is unlikely to change anytime soon because it works so well for the drug companies). Patients should know this. They should also know that the reliability of psychiatric diagnosis is poor in the first place, and that psychiatric illnesses have no established biochemical basis with which to guide treatment.
Finally, I should say that even though I call myself a psychiatrist and I prescribe drugs, I do not believe I’m taking advantage of my patients by doing so. All of my patients are suffering, and they deserve treatment. For some, drugs may play a key role in their care. But when I see my entire profession move towards a biochemical approach—without any good evidence for such a strategy, and without a fair assessment of alternative explanations for behavior—and see, in my own practice, how medications provide no real benefit (or, frequently, harm) compared with other treatments, I have to wonder whether we’ve gone WAY beyond what psychopharmacology can truly offer, and whether there’s any way to put some logic back into what we call psychiatric treatment.
This article is an important OPEN LETTER that I just found at BEYOND MEDS:
The Hearing Voices Movement: In Response to a Father – ‘My Daughter, the Schizophrenic’
January 21, 2013
There was a heart-breaking and disturbing story in this weekend’s Guardian newspaper entitled ‘My Daughter, the Schizophrenic’, (1) which featured edited extracts from a book written by the father of a child called Jani. He describes how Jani is admitted into a psychiatric hospital when she is 5, diagnosed with schizophrenia when she is 6 and by the time she is 7, she has been put on a potent cocktail of psychotropic medications:
”Jani is on three medications: Clozapine, lithium and Thorazine (known in the UK as Largactil). This combination has been the most successful. Are her hallucinations completely gone? No, but as she will tell us, they are not bothering her. It’s like having the TV on in the background, volume turned down, while you’re doing something, and every so often you look up at the screen to see what 400 the cat and other hallucinations are doing. They remain on Jani’s periphery, but she can still function in our common reality.”(2)
This harrowing description exemplifies the worst excesses of responding to a deeply troubled child’s distress as if it were a pathological illness, with the full psychiatric arsenal. What ensues can only be described as an account of psychiatric, human rights abuse.
If only Jani and her family were offered alternative kinds of help such as that developed by Voice Collective, (3) a London-wide project set up to support children and young people who hear, see and sense things others don’t. Voice Collective works with children, young people & families, and with professionals and organisations offering a whole range of services including peer support groups, so young people can meet with other young people with similar experiences, creative workshops, 1-2-1 support around making sense of voices and finding coping strategies, an online support forum. Voice Collective also offers a range of support services to families as well as supporting schools, social services, child and adolescent mental health services and other youth agencies to work with children & young people who have these experiences.
As one parent who has been supported by Voice Collective said:
‘You have brought us ‘normality’ within these experiences. You have taught us that with the appropriate support young people can lead happy and successful lives. You recognise the love we have for our children and have taught us how to support them”. – (Mother of a 12 year old)
How different things could be for Jani, her family and countless other children and families around the world if there were greater awareness that such humane and healing alternatives exist; approaches which help without doing more harm. (continued below the break)
——————————(Questions, comments and/or reflections are welcome on this website or via Twitter @JacquiDillon Jacqui Dillon’s website: http://www.jacquidillon.org
- January First: A Child’s Descent Into Madness And Her Father’s Struggle To Save Her, by Michael Schofield, published on 1 February by Hardie Grant Books.
Jani and her family originally appeared on the Oprah show in 2009. Many of us within the Hearing Voices Movement were so saddened and disturbed by Jani’s treatment that we wrote an open letter to Oprah Winfrey. Here is the open letter from INTERVOICE – the International Network for Training, Education and Research into Hearing Voices – an international organisation dedicated to spreading positive and hopeful messages about the experience of hearing voices across the world, reprinted again.
We are writing in response to your programme about “The 7-Year-Old Schizophrenic”, which concerned Jani, a child who hears voices, which was broadcast on the 6th October 2009. We hope to correct the pessimistic picture offered by the mental health professionals featured in your programme, and in the accompanying article on your website. What upset us most and moved us to write to you, is that parents will have been left with the impression that they are powerless to help their children if they hear voices. We are also concerned that the programme gave the impression that children with voices must be treated with medication. We note that the medications mentioned in your programme all have very serious side effects. (For example, antipsychotics such as Haldol cause neuronal loss, block the dopamine pathways in the brain required to processes rewarding stimuli, and carry a high risk of neurological and metabolic side effects such as Parkinsonianism and diabetes. Their effects on the developing brain are largely unknown and, in our view, they should only be given to children as a treatment as absolutely last resort.)
We have been researching and working with adults and children like Jani for the last twenty years, and our work has led us to very different conclusions from those reached by the mental health professionals on your programme. One of our founding members, Dr. Sandra Escher from the Netherlands, has spent the last fifteen years talking to children who hear voices, and to their parents and carers. This work is the most detailed and thorough investigation of children who hear voices carried out to date [1, 2]. The most important findings from recent research on hearing voices are as follows:
Prevalence of Voice Hearing in Adults and Children
Recent large-scale population (epidemiological) studies have shown that about 4-10 % of the adult population hear voices at some time in their lives [3-5]. Only about a third seek assistance from mental health services. Amongst children, the proportion hearing voices may be even higher  and, again, only a minority are referred for treatment. Hence, it is wrong to assume that voice hearing is always a pathological condition requiring treatment.
Everyone has an inner voice. Psychologists call this phenomenon ‘inner speech’ and it is an important mechanism that we use to regulate our own behaviour (plan what we want to do, direct our own actions). Child psychologists have long understood that this ability begins to develop at about 2-years of age [7, 8]. Hearing voices seems to reflect some kind of differentiation in the mind’s ability to tell the difference between inner speech and the heard speech of other people [9, 10].
Link to Trauma
A common theme in research with both adults and children is the relationship between hearing voices and traumatic experiences. In adults, around 75% begin to hear voices in relationship to a trauma or situations that make them feel powerless [11-13], for example the death of a loved one, divorce, losing a job, failing an exam, or longer lasting traumas such as physical, emotional or sexual abuse. The role of trauma was identified in 85% of the children we have studied, for example being bullied by peers or teachers, or being unable to perform to the required level at school, or being admitted to a hospital because of a physical illness. In short, our research has shown that hearing voices is usually a reaction to a situation or a problem that the child is struggling to cope with.
Voices have a meaning. A related and equally striking finding is that the voices often refer to the problem that troubles the child, but in an elliptical manner. To take just one example from the children studied by Sandra Escher:
The voices told an 8-year-old boy to blind himself. This frightened his mother. But when we discussed whether there was something in the life of the boy he could not face, she understood the voices’ message. The boy could not cope with his parents’ problematic marriage. He did not want to see it.
We wonder whether anyone has attempted to establish why, in Jani’s case, the rat is called “Wednesday”, why the girl is called “24 Hours”, and why is the cat called “400″? What do these mean for her? Why does Jani want people to call her “Blue-Eyed Tree Frog” and “Jani Firefly”?
Good Outcomes Without Treatment
Recently, Sandra Escher conducted a three-year follow up study of eighty children who heard voices, aged between 8 and 19 . Half received mental health care but the other half were not given any specialist care at all. The children were interviewed four times, at yearly intervals. By the end of the research period 60% of the children reported that their voices had disappeared. Very often, this was because the triggering problems were dealt with or because the child’s situation changed – for example, following a change of schools.
Helping Children Who Hear Voices: Advice to Parents
It is important to appreciate that the desire to make voices disappear, although usually the goal of the mental health care services, is not necessarily in the best interests of children. Some children do not want to lose their voices. If children can find within themselves the resources to cope with their voices, they can begin to lead happier and more balanced lives.
The most important element in this process is support from the family. Unfortunately, we have found that mental health services often fail to have a positive effect on children’s voices, because they foster fear rather than coping. However, we have found that referral to a psychotherapist who is prepared to discuss the meaning of voices is often helpful.
It is important that parents do not assume that hearing voices is a terrible disaster but instead regard it as a signal that something is troubling their child. If parents assume that voices are a symptom of an illness, and are afraid of them, the child will naturally pick up on this feeling. This can lead to a self-defeating cycle in which the child becomes fearful and obsessed by the voices.
We would like to offer this 10-point guide for parents, indicating what they can do if a child tells them that he or she hears voices:
1. Try not to over react. Although it is understandable that you will be worried, work hard not to communicate your anxiety to your child.
2. Accept the reality of the voice experience for your child; ask about the voices, how long the child has been hearing them, who or what they are, whether they have names, what they say, etc.
3. Let your child know that many other children hear voices and that usually they go away after a while.
4. Even if the voices do not disappear your child may learn to live in harmony with them.
5. It is important to break down your child’s sense of isolation and difference from other children. Your child is special – unusual perhaps, but really not abnormal.
6. Find out if your child has any difficulties or problems that he or she finds very hard to cope with, and work on fixing those problems. Think back to when the voices first started. What was happening to your child at the time? Was there anything unusual or stressful occurring?
7. If you think you need outside help, find a therapist who is prepared to accept your child’s experiences and work systematically with him or her to understand and cope better with the voices.
8. Be ready to listen to your child if he or she wants to talk about the voices. Use drawing, painting, acting and other creative ways to help the child to describe what is happening in his or her life.
9. Get on with your lives and try not to let the experience of hearing voices become the centre of your child’s life or your own.
10. Most children who live well with their voices have supportive families who accept the experience as part of who their child is. You can do this too!
In conclusion we would like to stress that, in our view, labelling a seven-year-old child as schizophrenic and subjecting her to powerful psychotropic medication and periodic hospitalisation is unlikely to help resolve her problems. Indeed, the opposite is most probable: children treated in this way will simply become more powerless. Because your well respected, award winning show reaches out to so many people, we are concerned that there will be many viewers who will be left with the impression that the treatment Jani receives is the only method available. We fear that this may cause some children to be subjected to an unnecessary lifetime in psychiatric care. It is very important to recognise that hearing voices, in itself, is not a sign of psychopathology.
We hope you will give consideration to the possibility of making a future programme showing the other side of the story, one of hope, optimism and with a focus on recovery. Perhaps you could make a programme about a child with similar voice experiences to Jani, who has been helped to come to terms with her or his experiences and to discuss with the child, parents and therapists how this was achieved? If there is any way we could help make this happen, please contact us.
We look forward to hearing from you on the issues raised in our letter.
(Letter re-edited with the kind assistance of Professor Richard Bentall)
For the Selected bibliography please see original piece at Mad In America. http://www.madinamerica.com/2013/01/the-hearing-voices-movement-in-response-to-a-father-my-daughter-the-schizophrenic/
Here are the first several comments that followed:
Novel ‘Avatar Therapy’ May Silence Voices in Schizophrenia
LONDON ― A novel treatment may help patients with schizophrenia confront and even silence the internal persecutory voices they hear, new research suggests.
Avatar therapy allows patients to choose a digital face (or “avatar”) that best resembles what they picture their phantom voice to look like. Then, after discussing ahead of time the things the voice often says to the patient, a therapist sits in a separate room and “talks” through the animated avatar shown on a computer monitor in a disguised and filtered voice as it interacts with the patient.
In addition, the therapist can also talk by microphone in a normal voice to coach the patient throughout each session.
In a pilot study of 26 patients with treatment-resistant psychosis who reported auditory hallucinations, those who received 6 half-hour sessions of avatar therapy reported a significant reduction in the frequency and volume of the internal voices ― and 3 reported that the voices had disappeared altogether.
“Opening up a dialogue between a patient and the voice they’ve been hearing is powerful. This is a way to talk to it instead of only hearing 1-way conversations,” lead author and creator of the therapy program Julian Leff, MD, FRCPsych, emeritus professor at the Institute of Psychiatry in London, told meeting attendees.
Dr. Julian Leff
“As the therapist, I’m sharing the patient’s experience and can actually hear what the patient hears. But it’s important to remind them that this is something that they created and that they are in a safe space,” Dr. Leff told Medscape Medical Newsafter his presentation.
Two presentations were given here at the International Congress of the Royal College of Psychiatrists (RCPsych) 2014 the day after the study results were released in the print edition of Psychosis.
According to the investigators, 1 in 4 people who hear phantom voices fail to respond to antipsychotic medication.
Dr. Leff explained that this program started a little more than 3 years ago, after he had retired “and could start thinking clearly again.” He had been interested in the phenomenon of phantom voices for more than 40 years.
“Our mind craves meaningful input. That’s its nourishment. And if it’s deprived of nourishment, it pushes out something into the outside world,” he said. “The aim of our therapy is to give the patient’s ego back its mastery over lost provinces of his mental life.”
The researchers used the “off-shelf programs” Facegen for the creation of the avatar faces and Annosoft LIP-SYNC for animating the lips and mouth. They also used a novel real-time voice-morphing program for the voice matching and to let the voice of a therapist to be changed.
In fact, Dr. Leff reported that one option the program provided changed his voice into that of a woman.
After a patient chose a face/avatar from among several options, the investigators could change that face. For example, 1 patient spoke of hearing an angel talk to him but also talked about wanting to live in a world of angels. So the researchers made the avatar very stern and grim so that the patient would be more willing to confront it.
Another patient chose a “red devil” avatar and a low, booming voice to represent the aggressiveness that he had been hearing for 16 years.
For the study, 26 participants between the ages of 14 and 74 years (mean age, 37.7 years; 63% men) were selected and randomly assigned to receive either avatar therapy or treatment as usual with antipsychotic medication.
The length of time for hearing voices ranged from 3.5 years to more than 30 years, and all of the patients had very low self-esteem. Those who heard more than 1 voice were told to choose the one that was most dominant.
Dr. Julian Leff shows examples of faces used in avatar therapy at RCPsych 2014.
During the sessions, the therapist sat in a separate room and played dual roles. He coached the participants on how to confront and talk with the avatars in his own voice, and he also voiced the avatars. All of the sessions were recorded and given to the participants on an MP3 recorder to play back if needed, to remind the patients how to confront and talk to the auditory hallucination if it reappeared.
“We told them: It’s like having a therapist in your pocket. Use it,” said Dr. Leff.
All of the avatars started out appearing very stern; they talked loudly and said horrible things to match what the patients had been reportedly experiencing. But after patients learned to talk back to the faces in more confident tones, the avatars began to “soften up” and discuss issues rationally and even offer advice.
Most of the participants who received avatar therapy went on after the study to be able to start new jobs. In addition, most reported that the voices went down to whispers, and 3 patients reported that the voices stopped completely.
The patient who confronted the red devil avatar reported that the voice had disappeared after 2 sessions. At the 3-month follow-up, he reported that the voice had returned, although at night only; he was told to go to bed earlier (to fight possible fatigue) and to use the MP3 player immediately beforehand. On all subsequent follow-ups, he reported that the voice was completely gone, and he has since gone on to work abroad.
Another patient who reported past experiences of abuse asked that his avatar be created wearing sunglasses because he could not bear to look at its eyes. During his sessions, Dr. Leff told him through the avatar that what had happened to the patient was not his fault. And at the end of 5 sessions, the phantom voice disappeared altogether.
Although 1 female patient reported that her phantom voice had not gone away, it had gotten much quieter. “When we asked her why, she said, ‘The voice now knows that if it talks to me, I’ll talk back,’ ” said Dr. Leff.
“These people are giving a face to an incredibly destructive force in their mind. Giving them control to create the avatar lets them control the situation and even make friends with it,” he added.
“The moment that a patient says something and the avatar responds differently than before, everything changes.”
In addition, there was a significant reduction in depression scores on the Calgary Depression Scale for Schizophrenia and in suicidal ideation for the avatar participants at the 3-month follow-up assessment.
A bigger study with a proposed sample size of 140 is currently under way and is “about a quarter of the way complete,” Dr. Leff reports. Of these patients, 70 will receive avatar therapy, and 70 will receive supportive counseling.
“In order for others to master this therapy, it is necessary to construct a treatment manual and this has now been completed, in preparation for the replication study,” write the investigators.
“One of its main aims is to determine whether clinicians working in a standard setting can be trained to achieve results comparable to those that emerged from the pilot study,” they add.
“Fascinating” New Therapy
“I think this is really exciting. It’s a fascinating, new form of therapy,” session moderator Sridevi Kalidindi, FRCPsych, consultant psychiatrist and clinical lead in rehabilitation at South London and Maudsley NHS Foundation Trust in the United Kingdom, told Medscape Medical News.
Dr. Sridevi Kalidindi
“I think it is a novel way of approaching these very challenging symptoms that people have. From the early results that have been presented, it provides hope for people that they may actually be able to improve from all of these symptoms. And we may be able to reduce their distress in quite a different way from anything we’ve ever done before.”
Dr. Kalidindi, who is also chair of the Rehabilitation Faculty for the Royal College of Psychiatrists, was not involved with this research.
She added that she will be watching this ongoing program “with great interest.”
“I was very enthused to learn that more research is going on with this particularly complex group,” said Dr. Kalidindi.
“This could be something for people who have perhaps not benefitted from other types of intervention. Overall, it’s fantastic.”
International Congress of the Royal College of Psychiatrists (RCPsych) 2014. Presented in 2 oral sessions on June 26, 2014.
Original Article From MEDSCAPE:
TAKE THESE BROKEN WINGS…
This is an incredible video, which, though long, is well worth watching. For anyone who believes that recovery without medications is impossible or not likely, you should watch this with at least half an open mind. And for anyone who has given up hope, this should give you a lot of hope. I usually cannot watch entire videos half this long, but I watched this one all the way through, even though I admit I had to take breaks because (Yes, I take meds myself) my attention span is short…But it was worth it to learn that one of the women featured not only recovered from her severe schizophrenia without taking psychiatric medication, she remained absolutely psychosis free and became a psychiatric nurse for 30 years. What I would give to speak to her about the sorts of treatment, or abuse that passes for treatment here in CT! But be that as it may, do watch this if you can. It is absolutely astonishing. And beautiful too.
When I saw at the end of this film, part four, before the depressing note that stated all that Indian law might not permit Reshma to do in her life, how she was making a living by painting, all I could think was, WOW! Go for it! At the very least, she is not being held back by the strictures of disability law and Medicare and Medicaid earning limits, or being forced into a permanent sick role because of same, simply in order to have a roof over her head and food to eat. No, she was lucky enough to have a family that both really and truly took care of her in her worst moments and fought for her in the best sense of the word, and also one that let her go when she needed to fly free. Most of us are not so lucky…alas. I think the support that she got all through her illness played an enormous role in her recovery, frankly. And I dunno how many of us get that sort of community or family support, but I wager that it is not many. I certainly did not. I wish I had, but it was very much to the contrary. Instead of support, I was abandoned entirely, both financially and emotionally. Left high and dry, to such an extent that people who met my parents after the break, never knew I existed, not for thirty-five to forty years. Some are only just learning of my existence now, as they meet me when I visit my mother. They didn’t even know or understand that all along Lynnie had a twin!
But I do not wish to dwell on that, except to say that things did not have to be as they were. And we do not have to live as second class rejects in society, except insofar as we accept that role. And take it on, along with the disability status and payments that we are told we should apply for at the first psychotic break. I disagree. If a person has a work history (and history is the single best predictor of the future, if anything can predict it) and has shown that he or she can hold a job, then why after a psychotic break should they be told they will never work again and that they should apply for social security disability? Disability signifies Permanent and total disability, that’s what it is for. You are not supposed to get better, and it’s meant to be “for good.” No, it is not impossible to get off SSDI and you can in fact earn your way off it. But how many people do? Not a single person I know who ever obtained SSDI payments ever got off it or ever even tried to do so. The best they did was earn just below the legal limits of what one can earn before they start counting against your disabled status. Which is to say, they worked, yes, but only a little, and only to the extent that it never threatened their standing as a disabled person.
What a crappy system. Someone a few months back when I was in the hospital asked me why I was so angry at the System, and why I counseled anyone under 50 not to go for disability…and this is why. Because it paralyzes a person into doing nothing with his or her life, it keeps them mired in permanent poverty, and it encourages lethargy and breeds depression and recurrent illness. I believe it does NOBODY any good. Frankly. True enough, I cannot say that I am not grateful as hell that I have had a monthly income for all my adult life, as I have never been able to work an 8-hour day regular job. But if, instead, there had been creative rehab or job counseling and creating, maybe someone would have discovered my artistic abilities earlier in my life and got me going, and using them earlier in a more productive and income-earning capacity.
I was never, and never claimed to be, unable to do anything at all. I simply could not follow a routine of any kind or go into an office or workplace from 9-5pm. Since that made me unemployable in their lights, I was “disabled” and put on the SSI and SSDI rolls. But in truth, while it guaranteed me an income, it also sidelined me for life, because I didn’t have to do anything to survive or even to get ahead. And in fact I was not allowed to get ahead or I would have lost the very disabled status that I now needed simply to qualify for housing and food. It was a terrible catch 22 situation that only perpetuated itself once I was caught in it. I could never get out of it once I accepted the first check…
And it only got worse when I moved into the cushiness of subsidized housing. Now, not only can I not move (it is HUD housing not Section 8 so it isn’t even portable) but I am “used” to a piddling rent of 1/3 of my piddling income. I have stopped knowing how to scrimp and save and live on pennies a day…because I do not have to. Everything is guaranteed here. Everything is safe. But I am suffocating, because I have no life, and no prospects for any change or growth or movement because at age 60 my life is at an end…I will live and die in these measly 2 rooms, living on SSDI and SSI, earning nothing, doing art and storing it away for nothing and no one…What good is that?
That, my friend who wanted to know why disability is such a bad deal, is why I counsel anyone who is not close to retirement not to go the disability route, not unless you want to do nothing and live in poverty for the rest of your life, and are content with a life of watching TV and a strict budget, using food-stamps and coupons. Because it will come down to that, that is, if you have a TV. And lucky you if you have a car and can afford to keep it on the road….If not, think about whether or not you can get rides, because the bus can be a drag when it is raining or snowing and you have a lot of groceries to carry. You better keep the car in tip top shape in any event, because you won’t be buying another anytime soon on disability from Social Security…I dunno about you, but no one I know gets much more than $1000.00/month from SSDI and usually we get hundreds of dollars less than that. One car repair bill can rip a monthly check to shreds.
I dunno what most wage-earning people think a life on disability is like, but it isn’t a cushy life of luxury, not at all. I haven’t bought or been able to buy new clothes in nearly ten years. (I wouldn’t want to anyway, because I like to buy used clothing and not generate new carbon, but do you really think I could afford on my SSDI check the price of any clothing except Walmart’s, that abomination of a store?) I cannot even afford to get food at Stop and Shop, let alone new clothing anywhere. I buy literally everything used, at GOodwill, or I barter or get things free through Freecycle. Or I do without. The only new purchases I make are art supplies, when I cannot get them at tag sales, or through other outlets. And I do not replace my erstwhile beloved pet Eemie, because I know I cannot afford a cat. You make choices in this world. If you choose to go on disability, I believe they should tell you precisely what sort of life you are choosing. Or give you options so that disability is only one of several equally feasible ones. It ought not be simply: go back to work at the same job, at the same level of stress, or go on disability. That is stupid, especially if one has been psychotic. But it also ought not be, You have been psychotic, and we are certain it will recur, so you will never be able to work again. That is double nonsense. NO ONE can predict the future, or tell a single soul that a psychosis will or will not recur. Only time will tell, and predicting a good prognosis has been shown to pay off with better outcomes than telling a patient that the future looks dire.
Okay, enough for now. I hope I haven’t been too oldy and moldy-sounding. I’m just very discouraged about my own limited and stagnating life. I do not feel as old as the system is making me behave. I could have a good life for the next two decades or more and maybe even a career. After all, Grandma Moses didn’t start painting till she was much older than my mere 60 years, and she had a long painting life ahead of her. No one told her she should just hide her head in the sand and wait to die. Or if they did, she ignored them and went ahead and painted and painted. I won’t give up on art, but I am frustrated and feel utterly stymied by a system that has clipped and cauterized my wings.
Finally, this is the large Turtle that I owe Tim, as it looks at present. I am going at it very slowly but surely.
This video was made during our “book tour” of 2005-6 after DIVIDED MINDS: Twin Sisters and Their Journey through Schizophrenia was published. I had not seen it for several years when my good friend, the poet Mizzy Hanley, located it by chance on YouTube. I am surprised, frankly by how eloquent my speech is, though I cringe, today, at some of the things I said. How differently my talks today are! In any event, much of it still holds true, though now I would couch things in somewhat different language, and might not so readily give the voice of certainty to such statements as “I suffer from schizophrenia.” Nevertheless, the comments underneath are certainly encouraging, and if it helps anyone for us to have said what we did then good.
This was the third picture I did at Yale. During the three weeks I was there, I often had a difficult time when I heard another patient yelling or getting angry. At one point, a young woman (younger than I at any rate) did a fair amount of screaming and complaining. And I heard a lot of noise that I thought portended or suggested violence was happening. I became very scared, terrified in fact, not because I thought I would be hurt, or that she would somehow hurt me. I am never ever afraid of other patients. My only fear at any time, aside from fear of the staff behavior towards me, is fear that another patient will be hurt or traumatized by staff use of seclusion or restraints or other violence on them.
Christine Simpson, the LCSW assigned to me on my team, recognized that I was panicking, and at least three times that day sought me out and just sat with me, talking to reassure me both that I was fine and that the other woman was fine, whatever was going on. She even came back before she went home to check on me and make sure I was okay before leaving, well after 5pm. I don’t think I ever thanked her enough for her support in the other posts, so I hope this does so. She was wonderful and I think she went out of her way to make sure I was not only “just okay” but that everything was as good as it could possibly be.
I am so profoundly grateful and remain astonished, both, that YNHPH has a philosophy of patient-centered care, of dignity and respect for the person, and also practices it so well that it doesn’t need to preach anything to the patient at all. You know, I believe the Washington Square 2 unit “advertises” itself online using the words Dignity and Respect, but I did not know this before I wrote my first blog post about yale or went there. I simply understood it from the way they treated me and everyone else. It was also perfectly obvious to everyone who visited me there.
I have donated picture #2, the one with the red bird of fear (“oiseau de peur”), to Yale Psychiatric Hospital, because of Chris Simpson and Dr Milstein and everyone else on the team and all the aides and counselors on the unit who work so well together. A huge thank you, to all of you.
This is from a 2011 entry on my About Schizophrenia blog. However I have changed it and updated and added to it, so I thought I would post it here. Dunno how many of my wordpress readers might not have seen the first version at all. I have also added a discussion of Xyrem, my sleep medication to the “mix” as I consider it a “minor miracle” that has been underreported and never before used.
Okay, I admit it, I have had my conflicts surrounding schizophrenia and the issue of medication — whether to take it, when to take it and what, if anything, I will take. In fact, I admit that this remains an issue, though less of one so long as there is a medication that I find inoffensive. But more on that later. First let me address the problem of that conflict itself.
In the “old days,” which is to say, during the 1980’s and early 90’s, I was treated with the so-called “typical” neuroleptics like low-potency Thorazine and Mellaril (in doses as high as 1500mg which left me with an eye problem known as chorioretinopathy, which activated once and could reactivate at any time and potentially lead to blindness…). I was later treated with high potency, lower dose drugs like Haldol, Trilafon, and Prolixin, either orally or by long-lasting depot injection. Although I was compliant with these meds for a while, I eventually found them so troublesome that while hospital doctors insisted they “helped” me, more often than not I would take them in order to be released from the hospital, only to stop them again.
This became a pattern that led, familiarly, to what was called the revolving door in and out of psychiatric units. While I understood this only vaguely, I found the dulling side effects, not to mention the physical discomfort of these medications so terrible that even if not taking them meant yet another hospital stay, nevertheless I often refused — in fact I could not bear to take them despite the psychosis that resulted. Had anyone bothered to ask me why, I would have told them that the drugs’ side effects were simply worse than the illness; they were hell and there were no two ways about it.
All the hospital staff and outpatient doctors and nurses believed that no one could possibly wish to choose “madness” over mere drug side effects, but I was someone who frankly preferred the former to the agony of the latter.
Now, while I speak as if I knew I was psychotic, that is not altogether true. All I knew was that I was being hospitalized a great many times, that I had been told that if I took the pills I was given, I would be able to stay out. I did not at the time believe that I had any illness at all, and did not for a very long time believe it. However, what I did want was to avoid the often brutal treatment of various hospitals, and their use of four-point restraints, sometimes for days at a time, spread-eagled tied to the corners of the bed, in the 90’s , and that was what sometimes persuaded me to take them, not the understanding or agreement that I was ill.
But surely I was not alone in feeling that the side effects of the meds were worse than the consequences of not taking them. There would not be so many people with schizophrenia who like me refused them, if so. Whether I believed I was ill and needed to take medication or not, it hardly matters when the pills I was given caused unbearable pain, or so deadened me, I felt, that my life was scarcely worth living…
I know those meds in particular– the older drugs both lower potency and higher potency, at almost any dose, caused me physical side effects and physical suffering. That alone was enough to make me ambivalent about taking them. What I never knew, and still do not really know for certain, was whether the drugs themselves emotionally deadened me, or whether what I came eventually to appreciate might in fact have been illness after all was the cause of my feeling deadened. Did I lack enthusiasm and passion because of the illness or because of the medication side effects?
Through the early 90s, I was on Prolixin as the least distasteful anti-psychotic, and having been more or less forced to take the long-lasting depot medication, I could not “stop” taking it, not once my weekly injection had been given. Then finally, Connecticut’s Medicaid program started paying for Clozaril, and I was among the first people in the state to try it. All went well at first, and I seemed to be off to a good start. But unfortunately, once discharged to home, “all hell broke loose” with devastating side effects that were if anything worse than anything I had experienced on Prolixin or any other older neuroleptic. This may have been unusual, I do not know, but I had horrendous and immediate side effects: sensations of impending doom that made me afraid of falling asleep; then an inability to swallow even my own saliva; a kind of uncontrollable jerking, seizure-like, while I was conscious; and when I was awakened — nearly forcibly — in the morning, I experienced an unbearable sedation that took hours to wear off…
I gave the drug several trials, but I was not disappointed when I developed a very low white cell count and was no longer permitted to take it. After that, it was back to Prolixin, and back to what had never really lifted, not even with the so-called awakening miracle drug of Clozaril: the deadened feeling. I felt hopeless, as if nothing would ever really work better for me, but then again, why should it when I didn’t really suffer from an illness like schizophrenia to begin with?
My therapist, the one who had tried me on Clozaril so many times, left her practice, and I was shunted to a nurse-therapist at the Clinic, one who took an immediate disliking to me. I felt a similar antipathy for her and so with no love lost between us, it was a huge surprise to me when, after she gruffly suggested I try this new drug, called Zyprexa, that I woke up only a few days later feeling, well, not only awake and better, but awakened. Awakened, alive, even reborn. I could read, I could remember what I read, I could study and I felt enthusiastic about it all in a way that before then I could only dream of.
Oh, I knew that I wanted to feel that way, but it had literally only been a dream or a wish before then. I had been vaguely hungry for this, but until I took Zyprexa, it seemed that I had been completely unable to grasp or fulfill my wish to do any of it. On the drug, I could pay attention and concentrate for longer than I had in decades, and learn things and retain what I learned. I felt that I had a whole lifetime to make up for, and started to make up for lost time. What is more, I was so confident in my ability to read and study now that I had found a drug that helped me, it seemed entirely possible to do so.
Why do I tell you this? Because while Zyprexa was the real miracle drug, a medication that did not so much give me back my life as give me a life I truly never had, it was, as I may have said before, also the side effect drug from hell. As I would soon discover, my weight started to increase almost from the first week, and it kept going up and up, despite my longstanding history of strict weight control and a vegetarian diet. Also, it is a very sedating drug, so that I had to fight off sleepiness that added exponentially to the sleepiness that my narcolepsy had caused for years.
Luckily my psychiatrist soon thereafter was also a sleep specialist; she had no problem treating this with the appropriate drug, Ritalin, and so it was not the problem it might have been, but the weight issue was, and is in fact, one of the reasons I have on-going conflicts over taking that particular medication.
Side effects of any sort remain 1) the major reason I will not take a given medication, and 2) the major reason I do take the medications that I take. If this surprises you, let me explain. First the latter: Of my present medication regimen, the salient ones for this discussion are Abilify and Geodon, and I take them not for the reasons my psychiatrist may have prescribed them, but for their “side effects,” at least as I perceive them. For instance, it was only once I started taking Abilify combined with Geodon — I could never tolerate Abilify by itself — that I found myself able to do art, and to write so fluently and so abundantly as to be unable to stop once I start. In fact, I call these two my output combo, medications that make my creative productivity enormous, whereas Zyprexa is just as literally my input drug, my intake drug, insofar as I can read and absorb information, and also eat, eat, eat.
For the same reason, though, I will not take Zyprexa because of its intensely dispiriting side effect of causing obesity and with it diabetes and and the concomitant conditions that go along with that. I wish I could take it: I miss reading terribly, miss the heady feeling of intellectual confidence and the ability to learn and remember and such.
Unfortunately, despite my early paean of praise for Latuda, I have to admit I have reconsidered it, as I found that though I cleaned my apartment regularly, I slowed down on my drawing and writing, and at the same time had not found myself interested in reading, nor even in watching my usual documentaries…It felt like a kind of straitjacket. I had weathered the psychotic crisis, but after that its usefulness seemed to be limited, and limiting. I agreed to take it, if necessary, in a crisis, but aside from then, I did not find that it helped beyond attenuating the worst symptoms.
Actually, in the two years since i took Latuda that one time, i have come to believe that the drug did little or nothing for me. I think that i simply managed to pull myself out of a bad time by myself… It can be done, and most especially when i am not facing that critical six month vulnerability time. And this was in fact in between the six months – during a period of relative strength. So my sense is that the latuda functioned mostly as a placebo, and that i myself pulled myself out of trouble.
In truth, given my druthers, in a crisis and forced to choose between one hell versus another, I might prefer Zyprexa over Latuda, since the benefit of the first outweighs the complete lack of any positive benefit from the latter. Which is to say, even if both happened to treat psychosis, only the Zyprexa has any positive side effect in addition to that. Latuda only has the negative side effect of strait jacketing me in the process.
The next two paragraphs were in my original post…i keep them as is here only so that i can follow up with a “but now” discussion of how things have changed:
One other “benefit” from taking Zyprexa, discovered within just the first week or so, was the realization that a medication made a difference, a huge difference. The conclusion I began to draw from this was not so sudden, and it was reluctant, but eventually I had to decide that perhaps, if a medication made such a radical difference, and a medication, Zyprexa, supposedly “treated an illness called schizophrenia” perhaps, whether it was schizophrenia or not, I did have some illness. Surely, if this medication, which did not help most people, made such an enormous difference for me, it must mean something…
I was reluctant for a long time to answer that further, and still cannot say a lot more without cringing. But if indeed there is a real entity, a real singular illness of schizophrenia, as opposed to a syndrome, and if Zyprexa really is a treatment for it, an effective and appropriate one, then god bless it, I will accept the diagnosis. I might still refuse to take the drug, but I would accept that I have the illness and continue to say that Zyprexa was the best miracle drug from hell I ever took!
But now i still cringe and cannot use the word schizophrenia without wanting to say, Psychiatry is an art of making an opinion…and even more often of making judgments. Two worse things to base a field of so-called medicine on i cannot conceive. Yes, Yale diagnosed schizophrenia, and did NOT decide to diagnose a personality disorder on top of it, which was, truth to tell, a huge relief*, because I KNOW that it is only the abusive hospitals that do that, and they diagnose an Axis II disorder largely to blame the victim, blame me for PTSD behavior that they induced! You simply cannot seclude or 4-point a vulnerable patient, viciously and brutally, and expect that person not to respond with traumatized behavior, which is predictably unpredictable…But can be described and has been.
In any event #1 how interesting that Hartford Hospital, in the 90s, when it was independent of the IOL, and often kept me for months, never saw any personality disorder in me when Sharon Hinton was head nurse…ONLY “schizophrenia, chronic” as I would read upside down on my admission papers. Personality disorders are lifelong and chronic. You do not suddenly develop them midstream in your life. It makes NO sense that Hartford Hospital as the IOL would now suddenly “detect” an axis II borderline disorder that they never did before. No, in fact, what happened was they traumatized me, and then blamed the victim for TRAUMA behavior…Or actually, for no behavior at all, since I never even resisted the restraints except once. And then the last night when I screamed bloody murder. And I did not even know that I would be released the next day. That was purely chance…and good luck.
In any event #2, I also took Zyprexa at Yale Psychiatric Hospital in February and March, and this disturbs me, because while I did some reading, my art output was tremendous as well. And Zyprexa was supposed to be only an INput drug. Of course, I gained ten pounds in two weeks…Worse, ever since I left, and got back on the Abilify and Geodon, and am taking NO Zyprexa, I haven’t done a thing, no poetry, no artwork of any sort. Not even a single trading card.
I do NOT believe in schizophrenia, not for me at any rate. I do not think I even need Zyprexa. But on the other hand, I wish I could take it, because I feel so much better when I take it and I do not know why. I mean, even when I am not fighting voices, I feel better on it. WHy is that? That doesn’t make sense…You should only take Zyprexa for symptoms that’s what I have always felt. Once the voices go away, forget it. Yet, yet, yet…I know my brain works better on it, and always has. It doesn’t seem fair. (Not that life is or should be fair…But I mean, really, my single most hated drug in the arsenal, and it is the one that works best and not only that it works really well…???) CRAP! My biggest fear is gaining weight. I understand how petty that is, and I should be bigger than that spiritually, but I am not. I simply cannot do it.
So there I am, and that’s the picture. Now you know how two-faced and hypocritical I am about medication. I tell people to take theirs. Or not. And I wont even take the one medicine that I know helps me, because it will make me fat. That is really the only reason I do not take it. The only reason. It is that petty, and that simple. But that impossible.
One additional drug that I take now, in addition to Abilify and Geodon and Ritalin is Xyrem, sodium oxybate, an anti-narcolepsy sleep drug, that helps me get delta sleep at night, slow wave deep sleep and to need less Ritalin during the day. As far as I am concerned the less Ritalin I take the better. I have never liked needing it or taking it, but I have always needed it just to stay awake during the course of a normal day. I haven’t gotten through a single day without several periods of sleepiness since college, when I would fall asleep at any time of the day, very unexpectedly.
Now that I take Xyrem at night, twice a night, though, I need fewer pills for alertness during the day, which is great. I also find that my appetite is vastly reduced, which might help with the Zyprexa, except that I could not take the two drugs together, as they are both very sedating and cannot be combined…What it does do is prevent any confusion of dreams with reality. I simply do not remember any dreams, and do not confuse the two any longer, I do not know why. I am not sure if this effect would hold true for all or if it is just for me. It is possible that dreams would increase for others. I only know that I used to have a huge problem, before the Xyrem and the other meds, with nightmares every night and being unable to tell dreams from reality…but now that I no longer dream I simply have neither problem at all.
*A huge relief: When I write that I am glad and relieved they did not Dx a borderline personality disorder, I must tell you that I am aware that in the hospitals where I have been abused, they dx such Axis II disorders as a way of communicating to all the staff that a patient is “manipulative and devious” and basically you cannot trust anything they say. I KNOW this to be the case because I have two psychiatrist siblings so I have gotten the lowdown, ie the truth about such terms in hospital REALLY mean. And to be called “A Borderline” in a hospital, is not a good thing. It is shorthand for being called a Royal Pain in the Ass.
Now, having Borderline Personality Disorder is something different from being called A Borderline…And having the disorder means you are suffering a great deal ALL the time. But in the hospital, when they claim to “suddenly detect” borderline personality, it is something wrong with the hospital, not the personality. And my point is that when they have brutally secluded or restrained a patient, that is NOT the time to suddenly be detecting anything except iatrogenic PTSD…
Today I have a guest poster, someone who has been contributing a lot of comments to my blog and who wrote one that I thought deserved a post of its own. Without a lot of introduction, since she tells it pretty much as it is, I offer the following: one brave woman’s unique and amazing recovery story.
From “LADY QUIXOTE”:
I believe it is a normal part of grief to have moments of hearing and seeing those close to us who have died. This is true of our pets, as well as the people in our lives, who have recently passed on. I’ve experienced it, as have many people I know, most of whom have never been diagnosed with any kind of mental illness.
What I don’t know, of course, is whether these experiences are “real,” meaning do they exist independently of our own grieving mind? I believe that at least some of these ghostly grief visitations may be real. The reason I think this, is because on two separate occasions, with two different deceased loved ones, my paranormal experience was witnessed and experienced simultaneously by other people who were with me at the time.
Life is a mystery. Death, even more so.
When I feel that someone who has recently died may be trying to communicate with me in some way, I tell them that I appreciate their caring enough to contact me, and that I miss them and hope they are in a wonderful place where I will join them someday – but to please refrain from contacting me again, because it is a “trigger” for the schizophrenia I was diagnosed with in 1967. I have not been bothered with continual voices since 1969, and I don’t ever want to go back to that miserable real-life-nightmare, again.
In most cases, when I make this request, the “visitation” immediately and permanently stops. On the rare occasion when it has not stopped, I prayed to my Creator for help and protection, and I also studiously ignore the voice or vision, and in every case it soon stopped.
My voices started when I was 14, shortly after my paternal grandfather died. His spirit seemed to visit me twice, the first time immediately after his death, when I was sitting at my desk in school and had no idea that my grandfather was about to die. Suddenly, I “knew” he was dead. It was so real, that I started to cry, right there in the classroom. When I got home from school that day, my mother met me at the door and said, “I have some bad news…” I stopped her and said, “I already know what it is, my Grandfather ‘R’ died today.” She asked me how I knew, and I said I “just did.”
A few months later a friend of mine introduced me to her Ouija Board. She said it was a tool for contacting the spirits of the dead. I had never heard of such a thing and was eager to try to contact my grandfather through her Ouija Board. We seemed to have success in contacting some kind of spirit, but whatever it was, it wasn’t my loving grandfather
My friend who owned the Ouija Board then decided to hold seances with me and some of our other friends, but nothing much came out of those, except that one girl starting screaming at the top of her lungs during one of the seances, saying that she saw a horrible vision. But no one else could see whatever it was that had her so terrified.
Around that time another school friend told me he had heard about the seances I was involved in, and he loaned me a book which he said gave excellent instructions on how to contact the dead. I don’t remember the name of that book, but it should have been entitled “Spiritism for Dummies,” or better yet: “How To Become A Schizophrenic in 5 Easy Steps!”
That book gave point by point instructions for things like “autonomic” (spirit) handwriting, and also on how to become a medium, so that spirits could use your body and your mouth to speak through. Good grief, what was I thinking when I went ahead and followed those instructions? I really must not have been very bright, when I was 14.
So, naive me, I carefully followed the book’s instructions and put myself into a trance, then I called forth the spirits, and – lo and behold – suddenly my hand was writing words all by itself, and the next thing I knew, I had a head full of loud voices that would not shut up even for a second. My only escape from the nonstop circus in my head, happened when I was asleep. During my waking hours, every moment was a real-life NIGHTMARE.
I begged the voices to PLEASE go away, go back to where they had come from. But they just laughed, cursed, and mocked me. Sometimes they told me to kill myself if I didn’t like my life anymore. They even told me to pray to Satan, since praying to God didn’t seem to help. Truly, I was in a living hell!
In desperation I went to my mother and told her about the Ouija Board, the seances, the How-to-be-a-Medium book, my “success” with autonomic spirit handwriting, and the visions and the voices that would not leave me alone. I desperately wanted help to get rid of those maddening voices, because I couldn’t even go to the bathroom without a crowd watching, mocking, and commenting! I couldn’t have a private thought without a multitude listening to it, and commenting and mocking me for the silly 14-year-old things I thought about! I asked my mother if she knew what I could do to make the horrible spirits go away?
My mother responded by making ME go away. Although I had never tried nor threatened to harm anyone, myself included, she immediately put me into a mental institution. The year was 1967, during that era when the answer to mental illness was to drug you up, lock you up, and throw away the key. My mother assured me that I would only be in the institution for a few weeks, until they made me well. But right after taking me there, as I later learned, she went home and took every item I owned to the town dump. I was never supposed to come out of the insane asylum, you see, because the schizophrenia I had been diagnosed with was “incurable.”
One of the other young teenagers involved in our seances, also ended up hearing voices, seeing visions, diagnosed schizophrenic, and committed to the same insane asylum. He had been trying to contact his mother, who died when he was six.
After nearly 2 years in the asylum, a social worker who saw me periodically because of my young age, asked me why I was there, when I always “seemed” so normal? (I was asked that question a lot, because I was not one of those who went around behaving oddly. I never talked aloud to my voices; I had no need to, since they could hear my thoughts, anyway.)
I told the social worker that I heard voices, and she asked me how the voices had gotten started. So I told her all about the Ouija Board, the seances, and the book on spiritism that had taught me step-by-step how to put myself into an hypnotic trance and contact the dead.
Then this brilliant social worker said, “Well, it seems to me that all you did was hypnotize yourself into hearing voices! You’ve seen hypnotists on TV, haven’t you? How they can hypnotize a person into believing something ridiculous, such as that they are a dog, and the next thing you know that person is barking and behaving like a dog? Then the hypnotist gives them the suggestion that they are no longer a dog, that they are themselves again, and they instantly revert to their normal human behavior. Why don’t you try hypnotizing yourself once more, and while you are under hypnosis, tell yourself that the voices are not real, and that when you wake up, you will not hear those voices, ever again.”
I went back to the ward, got into my bed, and did what she said. I highly doubted it would work, because the voices seemed as real to me as anything – how could I make myself believe via hypnosis that they were not real, when I “knew” better? But, I went ahead and tried the self-hypnosis-reverse-suggestion like my social worker had advised me to do, and…. IT WORKED! When I woke myself out of my self-hypnotic trance, the voices were GONE! There were only a few, very distant, occasional “echoes” of “little voices” now and then, for a brief period of time, but they were so quiet and intermittent that they were very easy for me to ignore, and soon even that stopped.
In this manner I have been free of voices, 99% of the time, since 1969 when I was 16 years old. I have also not taken any anti-psychotic medication since that time. The only exception to my not hearing voices is, like I said at the beginning of this long-winded post, when someone close to me dies. But in every case, I handle it by telling them to please leave me alone, with a brief explanation of why I need for them to leave me, and most do so immediately. Those that do not comply with my request, quickly go away after I pray to the Lord for help, and then I tell the voices to “get behind me,” and after that I ignore them until they get bored enough, I suppose, to go bother someone else. 😉
Today, my residual “mental problems” have to do with my chronic PTSD, general anxiety, and an occasional dark depression. I am in therapy for those things, and I also take a low dose of an antidepressant and an anti-anxiety medication. But I have no schizophrenia, and no psychosis of any kind, not in over 40 years, YAY!
I shared my story here in the hopes that it may help you in some way. You are someone I feel very privileged to call a friend, and I feel sad when you are having a rough time.
What is real? Is anything true and factual? Or are we all just deluded and mad as hatters? This is a serious question.
What I recall and what was written down in my chart about a certain four days in July 2012 are so different it is difficult to figure out whether my experience was fact in any sense of the word or, as “they”claimed, simply paranoid and delusional. Of course there is some truth in paranoia and delusion, since even a paranoid’s beliefs are based in feelings that arise honestly and from a foundation, I firmly believe, in true things sensed but unacknowledged. Feelings always have their own veracity. But whatever the philosophers may say about the fiction of facts, still there is, there must be, something more to the consensual world of what happens than mere perception.
I mean, either that security guard in the Emergency Department last July deliberately attempted to strangle me, or he did not. Either it happened or in some fashion I imagined it. It is that simple, isn’t it? Yes or no, red or green, one or zero. Like a digital configuration, there’s nothing vague about it: either it happened or it didn’t.
There are records. I know what the ones they wrote say, as far as they go. But how to interpret them since so little was written down, and unless my memory is so completely at odds with reality as to have confabulated the entire episode – which by the way, is what they claimed all along – how to explain the discrepancies when so much is not even mentioned. That they whisked my gurney into a seclusion room and assaulted me en masse is my version. In theirs, the room change is noted only in passing, and of the IM medication all that is said is that it was given “NOW”. Nothing else of the incident I recorded in great detail in my journal some days later, and raged about from the first day I was admitted to the day I left. In fact, I’m still outraged, months later.
I wanted to go home, they wanted me to stay. That I was abjectly terrified of being kept there meant to them that I was “paranoid.” I claimed I had no problems and had never been diagnosed with a psychiatric disorder. That was a problem for they had more power than I did as well as my lengthy psychiatric history on their side to prove I must be crazy to make such a claim. Worse, I was loud, demanding, and in my increasing panic, getting angry. They saw my screaming as a threat. Even though I was blind to what was going on, any onlooker could have seen that I could not win and in the end of course I lost mightily.
But let me go back towards the beginning.
It didn’t help that I had arrived at the ED by ambulance and immediately refused to have my “vitals” taken, asserting that I was “fine!” I then accused the nurse of just wanting to get paid for taking them. In short order I was whisked to the so-called “purple pod” where the psych patients were buried for hours until the on-call psychiatrist deigned to come down to see them.
“Here,” someone said, thrusting a hospital johnnie and a pair of pajama pants at me. “Undress and put these on.”
I looked down and saw that I was already wearing pj pants from another hospital. No one ever knew the real nature of what I wore — they simply passed for scrubs — and they were so comfortable that I kept them on day and night. “I’m already wearing pajama pants. I only need to change my shirt,” I said.
“No, you are wearing very nice blue slacks. Now, put on the pajamas, or do you want a couple of strong men to put them on for you?”
“Actually,” I sniped, “they are hospital pajama pants. I pilfered them from –“ and I named the hospital. But I made a show of undoing the snaps so they would see that I was going to comply. The last thing I wanted was anyone touching me or “helping” me undress.
Soon an APRN, came by and I thought, Wow, they are quick here, maybe it isn’t so bad being taken to a big hospital. Maybe I can get discharged from here in no time. Unfortunately, she was there only to do a 15 second “physical exam” that consisted of looking in my mouth and listening to my back with her stethoscope. Period. Pronouncing me cleared for a psychiatric interview, she rushed off to clear someone else. Then I sat on the gurney in my cubicle and waited. And waited.
I remember being cooperative for what felt like a long time. I tried to sleep, and I listened patiently to what was going on around me. I swore that I would simply hold my breath and bide my time until someone saw me, so that, calm, I could present my case and they would see I was safe and sane enough to be sent back home, not admitted or sent to some hospital against my will. But it was taking so long, it was taking hours for someone to see me, and I knew they were doing it to me on purpose. Did they think I, too, was drunk or on drugs just like the others here? I started to complain that I had waited long enough and needed to see someone. I was NOT drunk, did not need to dry out. Where was the doctor? There was nothing wrong with me, I did not need to be here. I wanted to go home!
Things started happening then. Memory fails me however and even the chart, which I just obtained a couple of days ago leaves out way too much. All it says is that I was uncooperative, then irritable, screaming and combative. Meds were “offered”.
I remember this: When I refused to take soul-deadening Haldol by mouth, they descended on me, wheeled my gurney into a solitary room and jumped on me, intending to inject me by brute force. In the struggle, a guard gripped my neck and compressed the arteries, strangling me. I tried to get the nurse’s attention, burbling through forcibly compressed lips that I could not breathe. But her response, attending only to her needles and not even looking at me, was an impatient, “You’re all right!” In a pulse of panic, I jerked away as she started to shove the first needle into my arm.
“Damn!” she cried as a rush of blood spattered us and the needle danced away from my skin. “Hold still!”
I’d hoped to get some respite from strangulation but instead of letting go of me, the guard reasserted his grip on my neck and pressed down harder. I felt the light go black as blood failed to reach my brain. Darkness descended. Sounds grew confused and dim. Suddenly I knew that I could die, that this was how patients had been “accidentally” killed during notorious restraint episodes in Connecticut. I did the only thing I could: I went limp, hoping the nurse would get the injections over with quickly and that the guard would not kill me before she was through.
One, two, and then, astonishingly a third needle punctured my arm. She wiped my deltoid muscle with an alcohol wipe then removed herself from the gurney. “All done,” she said, removing her gloves with a smack and she nodded, indicating the door.
With a cruel leisure, the guard let go of my neck, but he leaned down as he did so and muttered in my right ear: “That’ll teach you a lesson about bringing a JCAHO case against M— Hospital…” Then he and all the others strode out of the room, leaving me alone in what I had already been warned was a soundproof room where you can “scream all you want, but no one will hear you.”
In other circumstances, I would have screamed, soundproof or not, as the door was left open. But nothing was ordinary anymore. A guard – thuggish bully, no doubt a reject from the police academy — paid to protect people, had just partially strangled me in revenge for – what? What had I done to him? My case against that other hospital should have meant nothing to him. But what was clear to me, trying to get a breath and calm myself, was that I was not only not protected in the this ED, I was in mortal danger. I could not scream or rage in outrage, I could not even complain or demand to see a patient advocate. My life was imperiled. Still panting, trembling, in shock, I lay in the semi-dark of that single room and prayed — not to any god, mind you, but simply for my life, prayed to get out of that ED alive. I promised myself that I would not say or do anything “wrong,” would comply with everything they asked from then on in order to survive the night. But it was a long night ahead of me and I had no idea whether or not the guard would come back and finish the job. I was so terrified my teeth chattered. I felt a hollow coldness inside me of unutterable fear. And there was nothing I could do but lie there and hope he did not return.
I did not name the hospitals in the piece above, though I usually do, and I refrained from doing so because I do not know whether what I am going to write now is indeed true or not. But if it is not, then I do not want certain people being alerted to this blog post and reading it and taunting me with “Yehaw, we got away with it!” Read on, and you will see what I am talking about further on.
So as I said, I am in possession of my chart, the entire thing, 60 pp for a mere four day stay in the hospital about which I speak, including an approximately 10 hour stay in the ED. In it, there is absolutely no evidence that anyone ever took me or what I had to say seriously at any time. Everything I said was dismissed as paranoid and delusional, grandiose, disorganized or confabulating. (BTW Confabulate does not mean lying, it means to unintentionally “fabricate imaginary experiences as compensation for loss of memory.” But whatever they thought I was confabulating I have not the faintest idea. Or memory. Alas, the chart says nothing of what I spoke about.)
What has completely upset the applecart is my own statement, written in my journal and elsewhere: “Why on earth would that guard care whether or not JCAHO was involved in that other hospital?” On that thought rests everything, because of course, he had to have cared mightily to have wanted to strangle me for it. Or did he? Did he care, and in fact did he try to strangle me, and did he even say those words in my ear? I am serious.
You have to understand something: Once, years ago, I heard, or hallucinated, hospital nurses announce over the public address system in nearly the same words how they were going to “teach me a lesson” about — whatever it was I had done…and I knew I had heard it, knew I was hearing it at the time, except for the fact that I was on the phone with my sister at that time. I held out the phone in the air so she could hear it too, but she told me she heard nothing, assured me that I was hallucinating. What I described was not only unlikely but so beyond the realm of the likely that she was certain it could never have happened. “Its just your voices, Pammy,” she said, “you have to trust me, you are hallucinating.”
So remembering this, it gives me pause. For why would that guard care about JCAHO and that other hospital in the first or even the last place? What could it possibly mean to him? Security guards are usually hired from outside agencies so his over-involved concern with another hospital’s accreditation suddenly seems to me absurd. And if he did not care, why would he have tried to strangle me? Oh, maybe he did hold me down too hard, and I felt that, yes. But if I could speak, then I know I could breathe, so I was not actually being strangled either.
Perhaps I was simply frightened? And could it be that in fact he never said anything at all? That I “imagined” those words, hallucinated them, and then continued to believe that I heard him say them and that he wanted to kill me, all the time since then? Could it possibly be that some of what the hospital personnel said was true — NOT all of it, but some part of it. That I was in fact hallucinating and delusional? It doesn’t make their behavior right. It doesn’t justify throwing me into seclusion and injecting me with IM meds when I was not a danger to myself or others. It doesn’t even make admitting me to the hospital the proper thing to do in the first place. But, but, but…if I have heard people say things, visible people say things that they simply have not said, when they have not said anything at all, and I know this has been the case, then it is, I admit, just possible that what happened at the ED this summer might be another instance of the same…It pains me to think this. It frightens me to think that I could have been so mistaken for so long.
But what’s more, I worry that I am wrong to believe I might be wrong! That the guard DID say what I think he said, did intend to strangle me, and that I am giving him what he wanted: I am letting him drive me into believing I was/am crazy!
I do not know what to think. And I may never know for certain what happened. Not about this. However, one fact that I can corroborate in the record I am painfully aware I “knew” for months: I was given 3 IM drugs during that episode. Yet you only have to read my chart to see that I was given only 2: Geodon and Ativan. The third drug, Haldol, was canceled immediately after it was ordered. The records clearly state that only the Geodon and Ativan were ever administered. This is so striking an error of memory that it too makes me think again about trusting what I was certain I heard in that terrifying room where they held me down and injected me.
I don’t know what to do with this…I don’t know how to handle it or deal with it. It doesn’t feel good, or give me any sense of relief. I dunno how I feel. Just shocked, I guess. And perturbed, because I don’t know what else I have experienced that never “really” happened.
Thanks to the excellent blog, Dispatches from the Underclass, we have the post above. It is disgusting but true that in some – too many states! – “we” are still executing the most severely mentally ill…