August 30, 2017 | Tricia Rispoli, LMHC,
For patients that are battling chronic medical conditions, there are many opportunities to experience trauma. Trauma is defined as a “deeply distressing or disturbing experience.” With Autoimmune Encephalitis, the way the disease itself presents can be traumatic, as a person can lose control over their body and mind. In the acute phases of Autoimmune Encephalitis, a person can be hospitalized for many months. With this comes the loss of financial security, personal safety and privacy, and affluence and respect. Patients are subjected to frightening medical procedures and medications that can sometimes hurt and cause terrible side effects. Autoimmune Encephalitis can change the shape and outcome of a person’s life, even if that person goes on to have a complete recovery. As a caregiver of someone with Autoimmune Encephalitis, watching this disease progress and unfold in someone we love is scary and stressful. Many times you are also mourning the loss of a life you once knew, and in some rare cases, you are mourning the loss of a life. In this blog I will discuss Post-traumatic Stress Disorder (PTSD) and Generalized Anxiety Disorder. Both, while similar, can have equally devastating impacts, and left untreated, can leave a person with many years of debilitating symptoms and dysfunctional behaviors. PTSD and Generalized Anxiety Disorder can impact patients and caregivers alike. Being under constant stress as a patient or caregiver as a result of managing every aspect of Autoimmune Encephalitis leaves our bodies in a constant state of “fight-or-flight.” Even when the threat of harm is gone, the frightening memories and reminders of this disease do not go away.
Post-traumatic Stress Disorder
I remember the moment that it occurred to me that I was suffering from Post-Traumatic Stress Disorder (PTSD). My daughter was six months post diagnosis of Autoimmune Encephalitis. Six months had passed since the first time we rushed her to the Emergency Room in the middle of the night, unresponsive; unsure if she would live or die. Six months in she had had multiple grand mal seizures, surgeries, chemotherapy drugs, and more hospital stays than I had in my lifetime. It was a typical Monday morning, and I was on the way to work, listening to music and sipping my coffee. I was just a few blocks from work at a stop light when I heard an ambulance approaching from behind. I followed traffic laws and pulled off the road into a small parking lot to allow them to pass. I watched in my rear view mirror as they approached rapidly, going much faster than ambulances typically do through this busy intersection. As they passed, I noticed following on their bumper was a mini-van, who was matching their speed, weaving in and out of traffic, very obviously trying to stay with the ambulance, and by assumption, whoever was in there. There was nothing significant about that mini-van, or even the ambulance, but I remember suddenly not being able to breath. My heart was pounding in my chest and in my ears, and I felt an intense feeling of fear. I was shaking and gripping the steering wheel of my car so hard, my knuckles were white. Before I could stop myself, I began to sob violently. I didn’t know what was happening, but through that entire moment, I couldn’t get the sight of the ambulance out of my head. I kept replaying the urgency at which they were trailing the ambulance over and over in my head; the thought filled me with panic, as if I was the one driving the vehicle. It took me about ten minutes to calm myself. Thankfully I was able to recognize that I was having a panic attack, and could use self-calming strategies to gain control of my body. Afterwards, I was confused and felt exhausted. What just happened? I’ve never had a panic attack before. It wasn’t until later in the day, as I processed what happened with a colleague that they confirmed it was a panic attack, triggered by the ambulance from that morning. My colleague, well versed in trauma, said to me, “Tricia, have you considered that you may have PTSD?” The truth is, I hadn’t. You’d think being a trained Therapist I might have noticed or recognized some of my symptoms that I had been having as a sign of something more; I hadn’t been sleeping, crying on and off for no reason, flashbacks of certain aspects of my daughter’s illness. When I reflect on it now, I believe that I was so immersed in the trauma that it didn’t register. When a person is diagnosed with Post-Traumatic Stress Disorder, it comes after they have either directly or indirectly felt a threat to their life, or that of a loved one. Even as a trained Therapist, I downplayed my experience, but it was true; I almost lost my daughter to this disease. There are many moments during the months of pre-diagnosis, and post diagnosis where I felt intense fear, worry, and stress. There were days that I cried on the way home from work, because I drove past the blood bank, or a song reminded me of that morning I found her not breathing. The symptoms of anxiety and hypervigilance were interrupting my life, and some days I found it hard to function. I knew that I needed help.
What is Post-Traumatic Stress Disorder?
The National Institute of Mental Health defines Post-Traumatic Stress Disorder as, “A disorder that develops in some people who have experienced a shocking, scary, or dangerous event.” These events are almost always a direct or indirect exposure to death or threatened death, or serious injury. It’s natural to feel scared during and after a traumatic situation. The “fight-or-flight” response is a typical reaction meant to protect a person from harm. During a traumatic situation, or something that our body deems as hurtful or harmful to us, that “fight-or-flight” response is activated. When that response is ignored, because it’s not appropriate, or we are not able to escape the harm, a host of problems and reactions can occur in one’s body. When these problems are not resolved, and begin to impact daily functioning, a person is diagnosed with PTSD. A key characteristic of PTSD is that even when the trauma is removed, a person can continue to feel stressed or scared, even when they are not in danger.
Symptoms of Post-traumatic Stress Disorder
It is important to remember that if you are suffering from PTSD, there is nothing wrong with you! You are not crazy. You are not defective, and you have done nothing wrong! This disease and subsequent life are difficult, and your reactions and feelings are normal and valid. The following list of symptoms are in no way “black or white,” meaning, your PTSD can present and look very different from someone else’s. If you suspect that you may be suffering from PTSD, please contact your general practitioner to discuss treatment options.
Criterion A: stressor
The person was exposed to: death, threatened death, actual or threatened serious injury, or actual or threatened sexual violence, as follows: (one required)
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Direct exposure.
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Witnessing, in person.
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Indirectly, by learning that a close relative or close friend was exposed to trauma. If the event involved actual or threatened death, it must have been violent or accidental.
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Repeated or extreme indirect exposure to aversive details of the event(s), usually in the course of professional duties (e.g., first responders, collecting body parts; professionals repeatedly exposed to details of child abuse). This does not include indirect non-professional exposure through electronic media, television, movies, or pictures.
Criterion B: intrusion symptoms
The traumatic event is persistently re-experienced in the following way(s): (one required)
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Recurrent, involuntary, and intrusive memories. Note: Children older than six may express this symptom in repetitive play.
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Traumatic nightmares. Note: Children may have frightening dreams without content related to the trauma(s).
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Dissociative reactions (e.g., flashbacks) which may occur on a continuum from brief episodes to complete loss of consciousness. Note: Children may reenact the event in play.
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Intense or prolonged distress after exposure to traumatic reminders.
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Marked physiologic reactivity after exposure to trauma-related stimuli
Criterion C: avoidance
Persistent effortful avoidance of distressing trauma-related stimuli after the event: (one required)
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Trauma-related thoughts or feelings.
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Trauma-related external reminders (e.g., people, places, conversations, activities, objects, or situations).Criterion D: negative alterations in cognition and mood
Negative alterations in cognitions and mood that began or worsened after the traumatic event: (two required)
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Inability to recall key features of the traumatic event (usually dissociative amnesia; not due to head injury, alcohol, or drugs).
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Persistent (and often distorted) negative beliefs and expectations about oneself or the world (e.g., “I am bad,” “The world is completely dangerous”).
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Persistent distorted blame of self or others for causing the traumatic event or for resulting consequences.
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Persistent negative trauma-related emotions (e.g., fear, horror, anger, guilt, or shame).
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Markedly diminished interest in (pre-traumatic) significant activities.
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Feeling alienated from others (e.g., detachment or estrangement).
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Constricted affect: persistent inability to experience positive emotions.
Criterion E: alterations in arousal and reactivity
Trauma-related alterations in arousal and reactivity that began or worsened after the traumatic event: (two required)
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Irritable or aggressive behavior
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Self-destructive or reckless behavior
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Hypervigilance
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Exaggerated startle response
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Problems in concentration
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Sleep disturbance
Criterion F: duration
Persistence of symptoms (in Criteria B, C, D, and E) for more than one month.
Criterion G: functional significance
Significant symptom-related distress or functional impairment (e.g., social, occupational).
Criterion H: exclusion
Disturbance is not due to medication, substance use, or other illness.
Specify if: With dissociative symptoms.
In addition to meeting criteria for diagnosis, an individual experiences high levels of either of the following in reaction to trauma-related stimuli:
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Depersonalization: experience of being an outside observer of or detached from oneself (e.g., feeling as if “this is not happening to me” or one were in a dream).
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Derealization: experience of unreality, distance, or distortion (e.g., “things are not real”).
Specify if: With delayed expression.
Full diagnosis is not met until at least six months after the trauma(s), although onset of symptoms may occur immediately.
References: American Psychiatric Association. (2013) Diagnostic and statistical manual of mental disorders, (5th ed.). Washington, DC: Author.
PTSD & Autoimmune Encephalitis
AE can present with a variety of symptoms. It’s important to talk first with your Neurology Team if you suspect you are suffering from PTSD to rule out symptoms of PTSD versus disease flare. Feeling tense, on edge, intense panic, anxiety, as well as having difficulty sleeping and withdrawing from others can be symptomatic of AE, alone. Treatment for disease flare would be steroids, as Therapeutic interventions are not helpful.
What is Generalized Anxiety Disorder?
Experiencing high levels of stress, such as AE patients and their families do during treatment and recovery phases, can create the development of other disorders such as Anxiety. Anxiety, similar to PTSD gives you the feeling of being “on edge.”
Symptoms of Generalized Anxiety Disorder:
A. Excessive anxiety and worry (apprehensive expectation), occurring more days than not for at least 6 months, about a number of events or activities (such as work or school performance).
B. The individual finds it difficult to control the worry.
C. The anxiety and worry are associated with three (or more) of the following six symptoms (with at least some symptoms having been present for more days than not for the past 6 months): Note: Only one item required in children.
1. Restlessness, feeling keyed up or on edge.
2. Being easily fatigued.
3. Difficulty concentrating or mind going blank.
4. Irritability.
5. Muscle tension.
6. Sleep disturbance (difficulty falling or staying asleep, or restless, unsatisfying sleep).
D. The anxiety, worry, or physical symptoms cause clinically significant distress or impairment in social, occupational, or other important areas of functioning.
E. The disturbance is not attributable to the physiological effects of a substance (e.g., a drug of abuse, a medication) or another medical condition (e.g., hyperthyroidism).
F. The disturbance is not better explained by another medical disorder (e.g., anxiety or worry about having panic attacks in panic disorder, negative evaluation in social anxiety disorder [social phobia], contamination or other obsessions in obsessive-compulsive disorder, separation from attachment figures in separation anxiety disorder, reminders of traumatic events in posttraumatic stress disorder, gaining weight in anorexia nervosa, physical complaints in somatic symptom disorder, perceived appearance flaws in body dysmorphic disorder, having a serious illness in illness anxiety disorder, or the content of delusional beliefs in schizophrenia or delusional disorder).
References: American Psychiatric Association. (2013) Diagnostic and statistical manual of mental disorders, (5th ed.). Washington, DC: Author.
In conclusion
Post-Traumatic Stress Disorder and Generalized Anxiety Disorder is not something that goes away over time. Triggers may fade, and symptoms might lessen, but if left untreated, these disorders can lead to more serious problems and maladaptive behaviors. Living your life with a feeling of being “on edge,” or in a constant state of arousal is not safe, nor healthy for your body. Seeking immediate help from your General Practitioner, Licensed Therapist, Psychologist, or Psychiatrist is the most appropriate choice for managing Stress Disorders. Treatment options for both PTSD and Generalized Anxiety Disorder typically include talk therapy, cognitive-behavioral therapy, EMDR (Eye movement Desensitization and Reprocessing Therapy), Relaxation Techniques, and in some cases, Medication Management.
For more information, please visit the following websites:
https://www.nimh.nih.gov/health/topics/post-traumatic-stress-disorder-ptsd/index.shtml
https://adaa.org/understanding-anxiety/generalized-anxiety-disorder-Generalized Anxiety Disorder
