It’s Alright Not to Feel Okay…

For the most part, I try to stay positive about what I post on this blog. But, as most of you already know, life with a chronic illness is hard and it is definitely not always sunshine and rainbows as one might think – although I do believe that both would make things slightly easier to handle, don’t ya think? Nevertheless, there are just some things that come along with living “the sick life” that truly shake you to the core sometimes. For me, it’s hearing about other patients that have the same (or similar) diagnosis and have passed away as a result. I posted the following on my personal Facebook page a little while ago but felt it was important to share on this page as well. Sometimes you just have to say what’s on your mind because it’s good for the soul. In a way, venting allows me to grieve – not only on behalf of those that have passed but also for myself.


Sometimes I get so tired of hearing about my fellow warriors dying because their pain was not taken seriously or they couldn’t find the help that they needed. It’s becoming way too common lately and just thinking about how others have been treated because of their illness – hell, how I’ve been treated at times – makes me both physically and emotionally sick.

Trust me when I say that majority of people can’t even begin to comprehend the level of pain that those of us with vascular compressions live with each and every day. Or how much has been lost as a result of illness? Although I don’t necessarily agree, I can absolutely understand why many have chosen to take their own life.

Honestly, I’ve been lucky. It took a lot to just simply survive. Being misdiagnosed could have killed me. So could have all the wrong medications, treatments, and surgeries that have been offered to me along the way. I had to educate myself and challenge my care at every single step along the way. I’ve had to stand up to my doctors. I’ve had to fire some doctors. I’ve had to prove myself over and over again – prove that I was, in fact, sick; that I wasn’t imagining the pain – just so that my concerns would be heard and taken seriously. So that someone would help. Basically, I’ve had to fight with every bit of strength left inside of me just to get to where I’m at today – and no, I’m not better yet.

Obviously, this hasn’t been easy and I’m still in pain almost every day. Yet, somehow, I still hear that I’m not actually sick or that I’m not sick “enough”, even though test after test show’s that something’s seriously wrong and has been for a while. Eventually, something has got to give in the way we do medicine, especially when it comes to managing chronic or rare conditions. The gender bias in treating young women needs to stop as well.

No, it’s not anxiety! It’s not depression! And it’s definitely not in my goddamn head! These conditions are real and you would know that if you took a minute to listen.

Mostly, though, I’m angry – angry that this is somehow okay; that this is acceptable. I’m also incredibly sad as well. These tragedies could have been avoided. Most of these deaths are senseless. Something could have been done. The worst part, however, is that nobody cares. I repeat: nobody gives a damn.

Do you think the doctors cared when they heard that their patient had died? I doubt it.

Do you think the friends or family members who left when the person became ill and couldn’t get out anymore really cared? Not enough, obviously.

What about all the other people in their life who judged them, told them to try harder – to do more – to be more- to stop being lazy? Do you think they cared at all, really?

I cared, though… I still care.

Part of this is selfish, though, because I think about how easily that could have been me – and could still be me someday. I hear about the others just like me dying so frequently lately that the idea of death no longer scares me – it’s just par for the course at this point. How sad is that? I tell you, having a chronic illness makes you jaded.

I’m really trying not to be negative, but I’m so incredibly frustrated and disgusted that I just needed to vent. I just hope someone out there is listening.

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Whenever you need or want somebody to listen, I’m here. Just send me a message either here or on the Undiagnosed Warrior Facebook Page – I’d be more than happy to hear your story anytime.

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suicide

National Suicide Prevention Lifeline Magnet, SVP05-0126

National Suicide Prevention Lifeline Magnet

Please keep fighting fellow warriors!

Unidimensional Approach to Medicine: Why It Isn’t Working

From a global perspective, a multidimensional approach to health and wellness has long been considered the gold standard for both diagnosing and treating physiological and psychological illnesses or disease. Even the most widely used definition of health, which comes from the World Health Organization (WHO), defines health as being “a complete state of physical, mental, and social well-being” (Gurung, 2014, p. 6). However, the United States focuses the majority of its interventional programs and healthcare management around the traditional medical model of health – a unidimensional approach that provides a simple black and white definition of health in terms of simply lacking disease. According to Shi & Singh (2009), the medical model “emphasizes clinical diagnosis and medical intervention in the treatment of disease or its symptoms. Under the medical model, health is defined as the absence of illness or disease. The implication is that optimum health exists when a person is free of symptoms and does not require medical treatment; however, it is not a definition of health in the true sense but a definition of what is not ill health” (p. 28). The efficiency of the medical model in health is highly debatable and has proven to be ineffective in managing the overall health and wellness of the American population thus far. “Many of the peculiarities of this system can be traced back to the beliefs and values underlying the American culture. The delivery of healthcare is primarily driven by the medical model, which emphasizes illness rather than wellness. Even though major efforts and expenditures have been directed toward the delivery of medical care, they have failed to produce a proportionate impact on the improvement of health status” (Shi & Singh, 2009, p. 46). As we have learned throughout this semester, assessing health from a multidimensional approach is far more practical, especially given the complexity of health and health-related behaviors. Still, much of the contemporary model of health in America is still based primarily on the medical model of health for a number of reasons.

For instance, one of the key explanations that Americans rely solely on the medical model is that have had little to no exposure to other medical models of practice. It’s human nature to stick with what is comfortable and changing behavior or perspective is often a difficult and tedious process. Considering that both psychologists and medical professionals have long developed interventions and treatment programs around the medical model, primarily because it centers around what they’ve learned both in school and in clinical practice, it’s difficult to move away from the medical model as the accepted norm for managing health. As Gurung (2014) mentions, there are three main obstacles that prevent health-related interventions from reaching the clinical populations they have been designed for: “(1) researchers not always understanding the clinical applicability of their basic research; (2) a reluctance of clinicians to accept the value of their basic research; and (3) various institutional-level constraints such as the lack of time, training, or funding” (p. 435).  All of these become problematic in approaching health from an alternate perspective because the lack of knowledge or evidence drives enough motivation for change. For example, both training programs and continuing education for health practitioners don’t generally educate on the biopsychosocial approach health, making the idea seem even more unfamiliar or accepted. “Only a few existing programs provide the necessary training to facilitate the development of health collaborations, and this is another key training area for the field to incorporate” (Gurung, 2014, p. 435). Similarly, since the biopsychosocial approach is relatively new in terms of research and practice in the United States, despite being around for centuries in other cultures around the world, there is just not enough evidence not clearly support or influence professionals to transition to the biopsychosocial approach. Finally, healthcare professionals are reluctant to move away from the current medical model, even when they strongly believe in the biopsychosocial approach to health because of the financial burden it places on both themselves and their patients.

Many of the biopsychosocial approaches to health care and management often are reimbursed by insurance under the current medical model of health and billing becomes problematic with the limited availability of medical codes that are acceptable for what insurance sees as unnecessary, experimental, or alternative treatment options. For example, there are six codes that clinical health psychologists are permitted to use and only certain health plans accept all six of the codes. Medicare, for instance, accepts only five of the six CPT codes for insurance reimbursement (Gurung, 2014). “Not being reimbursed by insurance companies has been one of the biggest reasons for not enough attention being paid to psychological factors and treatment – most patients cannot afford to take care of their mental or physical health if their insurance refuses to pay for the services they need; if health providers do not get paid, they cannot afford to conduct research” (Gurung, 2014, p. 437).  Also, the diagnostic codes for mental illness are subjected to the scrutiny in a similar manner as CPT codes. Take the treatment of mental illness, for example. According to McLeod (2013), “psychiatric diagnostic manuals such as the DSM and ICD (chapter 5) are not works of objective science but rather works of culture since they have largely been developed through clinical consensus and voting. Their validity and clinical utility are therefore highly questionable, yet their influence has contributed to an expansive medicalization of human experience” (para. 38). Assessing and diagnosing patients under psychological or psychiatric care also becomes an issue in terms of credentialing, which can vary state by state, and ethical concerns have been raised about psychology professionals both diagnosing and treating patients without a traditional medical license. Although there is increasing evidence of the effectiveness of the biopsychosocial approach to medicine and health, there likely won’t be any advancement in moving the healthcare system of the United States over to a biopsychosocial approach until many of the above issues have been formally addressed and regulated.

Aside from the limited exposure to the biopsychosocial model in terms of professional utilization, the American public will likely remain reluctant in accepting a multidimensional approach to health for additional reasons outside of the current system of healthcare. For starters, the public overall lacks general knowledge in proper management or coping skills in dealing with health. Most of the information that is accessible to the public is both overwhelming and confusing, and many health reports provide conflicting information. Take the question of “what is the best diet?” for example. It has been ingrained in us from a young age that in order to be “healthy” we need to both eat right and exercise regularly. However, this concept often brings up more questions than it does answers. For instance, what is healthy to eat? What is a balanced diet? How much and when should I eat? How much should I exercise? What type of exercise? The questions are nearly endless. For those looking to change health behaviors, such as diet or exercise, often look for answers to the questions above. However, it’s likely to cause more confusion since there is no consensus or definitive evidence that constitutes right or wrong answers in this specific example. This becomes more evident in reference to the difficulties in defining the term health, as there are too many aspects to account for defining optimal health, making it challenging despite the growing number of theories regarding health and wellness.

Lastly, the importance of practicing healthy behaviors is, unfortunately, deficient within the modern American culture. As I mentioned earlier, both lifestyle choices and behaviors are among the chief determinants of health, however, initiating or activating behavioral change is extremely difficult to achieve and maintain over time. It’s human nature to be uncomfortable with self-awareness and often resistant to acknowledging their own unhealthy or negative habits that may contribute to health. Changing over to a biopsychosocial approach “would require a fundamental change in how Americans view health. It would also require individual responsibility for one’s own health-oriented behaviors, as well as community partnerships to improve both personal and community health” (Shi & Singh, 2009, p. 47). Once again, the lack of biopsychosocial approaches to interventional health behavior contributes to the minimization of healthy behaviors or practices and not all practitioners are sold on solely a biopsychosocial approach. “Surprisingly, not all parts of the scientific community saluted the importance of health behaviors, a controversy in the field of health referred to as the great debate” (Gurung, 2014, P. 423). Furthermore, the American culture has become increasingly sensitive about discussing health behaviors as to not offend others around them and there is limited knowledge of the health disparities affecting the majority of the population in one way or another.

Still, despite the number of obstacles still left to overcome, the biopsychosocial approach to medicine and health is slowly gaining momentum in the United States.  As more patients are becoming increasingly frustrated with American health care practices under its current standards, Americans are considering alternative forms of treatment as an option for managing their health, including holistic medical practices and therapies focused on the mind-body connection. It’s likely that as the field of health psychology continues to expand while health care in the United States declines, both medical professionals and their patients will be more willing to change their opinion on the biopsychosocial approach to overall health.

References:

Gurung, R. A. (2014). Health Psychology: A Cultural Approach (3rd ed.). Belmont, CA: Wadsworth.

McLeod, S. A. (2014). The Medical Model. Retrieved on February 26, 2016, from http://www.simplypsychology.org/medical-model.html

Shi, L. & Singh, D.A. (2009). Essentials of the U.S. Health Care System (2nd ed.). Sudbury, MA: Jones and Bartlett Publishers.

Is it POTS or Panic?

Now that my class is over in research methods, I can finally post a copy of the paper I worked on all of last semester. I ran into trouble when my computer crashed and I lost ALL of my work, so it wasn’t as good as I had originally planned but I still got an A on it.

So here it is – my research proposal.

Hope you enjoy.


Is it POTS or Panic?

Differentiating Between the Diagnostic Criteria for

Postural Orthostatic Tachycardia Syndrome and Panic Disorder

By The Undiagnosed Warrior

Abstract

The objective of this study is to identify features that could assist the medical community in correctly diagnosing and treating patients by differentiating between Postural Orthostatic Tachycardia Syndrome (POTS) and Panic Disorder (PD). According to Dysautonomia International (2014), approximately 85 percent of POTS patients have been told by at least one medical professional that their symptoms are “all in their head”. POTS patients are commonly misdiagnosed as having Panic Disorder (PD) because these two conditions share a vague presentation symptoms associated with autonomic dysfunction. Since the characteristics of POTS can be attributed to a number of differential disorders, the ability of a doctor to determine a definitive diagnosis for patients is becoming difficult and the consequences of misdiagnosis are monumental.  In testing physiological and psychological measurements, this study is expected to  identify specific characteristics associated to each disorder and, therefore, can be used to create concise diagnostic standards to be utilized by the medical community. Three study groups will be evaluated: POTS patients, PD patients, and a healthy control group. Subjects will be compared using formal medical diagnostic testing, including Tilt-Table Testing, Magnetic Resonance Imaging (MRI), and blood serology. Psychological measurements will be evaluated through self-assessment using the Panic Disorder Severity Scale (PDSS) and the Wahler Physical Symptoms Inventory (WPSI).  In identifying the key factors differentiating POTS and PD, this study could essentially contribute to the improved process for clinical diagnosis.


Is it POTS or Panic?

Differentiating Between the Diagnostic Criteria for

Postural Orthostatic Tachycardia Syndrome and Panic Disorder

Postural orthostatic tachycardia syndrome (POTS) is an exceedingly under-recognized form of dysautonomia, which is the umbrella term used to define a wide variety of conditions resulting from a malfunction in the autonomic nervous system itself. Dysautonomia can cause a severe range of symptoms as the autonomic nervous system controls the majority of the body’s primary automatic physiological processes, such as the ability to maintain heart rate, blood pressure, and even digestion. According to Dysautonomia International (2012), it is estimated that over 70 million people in the world live with some form of dysautonomia. Despite the prevalence of dysautonomia, it takes most patients years to get diagnosed due to a general lack of awareness between the public and medical professionals, leaving patients feeling abandoned in their health care (Dysautonomia International, 2014). Although there is no cure for any form of dysautonomia at this time, including POTS, research into these disorders is currently underway in hopes of developing better treatment plans for patients, in addition to improving the overall diagnostic methods currently utilized by the medical community.

The average amount of time for a patient to receive a diagnosis of POTS is about six years and approximately 85 percent of POTS patients have been told by at least one medical professional that their symptoms are either “all in their head” (Dysautonomia International, 2014) or they were sent for a psychiatric evaluation before they were diagnosed as having POTS.  Not surprisingly, POTS patients are commonly misdiagnosed as having Panic Disorder (PD) because the two conditions share a vague presentation of autonomic symptoms. In current practice, patients with POTS experience extreme delays in diagnosis or misdiagnosis due the complexities of their symptoms. The current diagnostic criteria needed to obtain an official diagnosis is defined by either an increase in heart rate of at least 30 beats per minute or the presence of a heartbeat exceeding 120 beats per minute occurring within a 10 minute period upon standing. In children and adolescents, a change of 40 or more beats per minute is needed since the variability of heart rate differs between adolescents and adults (Dysautonomia International, 2014).

The “gold standard” in diagnosing POTS is through the use of a tilt-table test, which monitors a patient’s vital signs as the table moves from a supine or lying down position to an upright position. A simpler and cheaper version of this test, called the “poor-man’s tilt table test”, is also useful in establishing a diagnosis and entails a similar process of measuring a patient’s heart rate and blood pressure while the patient is lying down, sitting up, and in a standing position. Additional methods include other forms of autonomic nervous system testing, such as Quantitative Sudomotor Axon Reflex Test (QSART), Thermoregulatory Sweat Test (TST), gastric motility studies, blood serology, and other forms of cardiac evaluation.

Although the severity of POTS can differ between patients, the more common presentation of this condition include the physiological indications of autonomic dysfunction, such as heart palpitations, dizziness, shortness of breath, decreased concentration, headaches,  gastrointestinal disturbances, fatigue, hypovolemia, blood pooling into the lower extremities, and episodic syncope or pre-syncope (Khurana, 2006). The symptoms of POTS are the result of the movement toward an upright position, like sitting or standing, and the onset of symptoms can either be acute or chronic depending on the underlying cause of the disorder. Given how often the triggering agent of this condition (sitting up or standing) occurs throughout events of everyday life and depending on the frequency and intensity of experienced symptoms, POTS can cause a great deal of dysfunction for those affected by this disorder.

According to Dysautonomia International (2012), approximately 25 percent of POTS patients experience such severe symptoms of autonomic dysfunction that they are considered to be permanently disabled.  Despite the intensity and significance of symptoms, POTS is namely an “invisible illness” because patients outwardly maintain a normal appearance. Since the disability in POTS patients is not initially clear to those around them, patients often are left feeling misunderstood by their family, their friends, and even those within the medical community. Delays in diagnosis are unfortunately quite common within the POTS community, especially during the early stages of this disorder.

According to Dysautonomia International (2014), about 34 percent of patients first noticed their POTS symptoms during their adolescent years (ages 13 to 19), although the average length of time between onset of symptoms and a formal diagnosis was approximately six years. Additionally, while only six percent of the POTS population received a diagnosis during their first physician visit, about 27 percent of patients needed to visit with 10 or more doctors and another eight percent had appointments with more than 20 doctors before they obtained their diagnosis. (Dysautonomia International, 2014). Doctors in the field of cardiology diagnosed the study subjects most often, with primary care physicians being the second most common category of doctor to make a diagnosis this condition. However, family practice or primary care physicians only identified the symptoms of POTS and provided a diagnosis in 12 percent of patients. Ultimately, the lack of resources and available doctors specializing in this disorder has continued to make it difficult for a patient with POTS to receive both the proper diagnosis and management of this condition. For example, one study showed that POTS patients had to travel quite a large distance from home just to receive treatment for this condition, with 50 percent of patients traveling over 100 miles, 21 percent over 500 miles, and eight percent over 1,000 miles (Dysautonomia International, 2014). Essentially, the lack of treatment available to POTS patients is a direct result of the limited number of doctors with the knowledge to both diagnose and treat autonomic nervous system disorders.

The reality is that there are too many obstacles that hinder doctors from identifying a definitive diagnosis. First, the primary characteristics of POTS can easily be attributed to a number of differential diagnoses, including those of a psychological nature. Therefore, in what should be a relatively simple and straightforward process, the diagnosis of POTS is then missed because the majority of medical professionals have not been properly educated or trained to detect specific disorders of the autonomic nervous system and many of them will not encounter a single patient previously diagnosed with dysautonomia, even after multiple years of practicing medicine. Determining a formal diagnosis is further complicated by the fact that the standard diagnostics ordered by physicians generally doesn’t account for modifications associated to postural or autonomic processes that are essentially typical of POTS. When labs and other testing return within normal limits and a diagnosis cannot be confirmed, the next option for physicians is to provide a referral to either a specialty clinic or for a psychological evaluation. For patients with POTS, it is usually the latter.

According to a study by Dysautonomia International (2014), approximately 83 percent of patients reported that they had been diagnosed with a psychiatric disorder at one time or another while seeking treatment for their symptoms. Since both POTS and panic disorder stems from the autonomic nervous system, causing similarities in the presentation of symptoms, it is also not surprising that the majority of patients were first diagnosed as having an anxiety disorder. Sadly, a large percentage of patients report that a medical professional had inferred that their symptoms were “all in their head” (Masuki et al., 2006). Although some patients seemed to show improvement following diagnosis and treatment of their POTS condition, a greater part of the subjects stated they either they felt the same or they got worse following intervention protocols. Researchers ultimately concluded that more awareness and education about POTS is needed throughout the medical community since “the lengthy delays that POTS patients experience in obtaining a diagnosis results in longer periods of suffering without proper treatment, increased costs to patients, and wasted healthcare resources” (Dysautonomia International, 2014, p. 21).

The likelihood of being misdiagnosed continues to grow every year in the United States, as the amount of pressure placed on the current healthcare system has doctors working harder than ever before. Current estimates imply that approximately 12 million individuals, or about one out of every 20 people, are misdiagnosed each year and perhaps even worse is the number of patients that never receive a diagnosis at all (Singh, Meyer, & Thomas, 2014). The consequences following misdiagnosis are monumental; a patient’s overall health or condition may not only deteriorate, but they could be at risk of losing their life as well. Not to mention that treatment between different diseases and disorders will almost always differ, especially in comparison to techniques involving physiological and psychological management.

The inability of doctors to generate an accurate diagnosis is mainly attributed to the deficient amount of time essential to thoroughly review a patient’s history and perform the physical exam, as well as order the necessary diagnostic tests to confirm potential or suspected diagnoses. Even then, some issues can remain undiagnosed if the labs fail to provide any valuable answers or the symptoms themselves are easily associated to a multitude of conditions, essentially making it nearly impossible to substantiate an appropriate diagnosis. Furthermore, the process of validating differential diagnoses is much more complex in patients whose underlying condition is either quite rare and, therefore, is not well understood by the medical community, or the presentation of symptoms involves a mixture of both physical and cognitive indications, where the origin of disease is virtually indistinguishable.

Take somatization disorder, for instance. According to Smith (2013), “somatization is a mechanism in which a patient with emotional pain exhibits that problem as if it were a purely physical problem, but no physical problem can be found. These complicated clinical problems don’t neatly fit into a specific diagnosis” (p.5). On the other hand, there is also a variety of biological disorders commonly associated with psychological symptoms. In multiple sclerosis, for example, patients may experience the loss of memory, verbal fluency, concentration, visual perception, and the ability to perform higher cognitive functions. Additionally, the etiology in a number of conditions is not currently known at this time (e.g. irritable bowel syndrome or chronic fatigue syndrome) and diagnosis can only be obtained through a process of exclusion (Smith, 2013). As a result of these intricacies in the developmental diagnosis, a substantial number of patients are mislabeled as having a psychiatric illness.

This is particularly prevalent in patients suffering from a variety of chronic symptoms, such as POTS or other rare disorders. “According to the National Institutes of Health (NIH), a disease is considered rare if it has a prevalence of fewer than 200,000 affected individuals in the United States and there are roughly 7,000 rare diseases currently identified” (National Organization for Rare Disorders, 2015, p. 1). Although POTS is still commonly considered a rare condition by the medical community, current estimates show that POTS may actually affect anywhere between 1,000,000 to 3,000,000 Americans, contrary to reported statistics on this disease (Dysautonomia International, 2012). The primary reason for this discrepancy is the direct result of the failure to diagnose or the misdiagnosis of this condition.

Patients with POTS are most often misdiagnosed as having PD primarily because of the resemblance of symptoms that two conditions share with one another. Like many other chronic conditions, both POTS and PD can initially present with seemingly vague and indiscriminate symptoms that could easily be misinterpreted as beings caused by a number of other disorders, both physical and psychological in nature. In both POTS and PD, patients often experience heart palpitations, shakiness, dizziness, nausea, shortness of breath, and abdominal distress. These symptoms, along with many others, occur in a chronic condition similar to POTS and PD because as a way to compensate for either a dysfunction or imbalance of other systems within the body. Prior research into the other forms of dysautonomia outside of POTS, specifically pure autonomic failure and vasovagal syncope, also exhibit either really high or really low autonomic response, causing similar symptoms (Umeda et al., 2015).. Therefore, it is essential to evaluate the activity resulting from the autonomic nervous system in order to fully understand the complexities with each condition.

The autonomic nervous system is one of the primary systems in the body and is responsible for the functioning of the majority of internal organs, including such structures as the “blood vessels, stomach, intestine, liver, kidneys, bladder, genitals, lungs, pupils, heart, and sweat, salivary, and digestive glands” (Merck Manual, 2015). Given the magnitude of the autonomic nervous system, it is further broken down into two smaller parts: the sympathetic and parasympathetic nervous systems. The sympathetic nervous system is primarily responsible for activities in response to perceived danger or emergency situations. For instance, the fight-or-flight response experienced during a panic attack occurs as the result of sympathetic activation. Alternatively, the parasympathetic lowers the sympathetic response in order to conserve energy. In parasympathetic activation, for example, a person’s heart rate will decrease and digestion may stall in order to restore the energy consumed during sympathetic activation. Essentially both systems balance one another to maintain appropriate response in both internal and external influences.  From a psychological perspective, however, it seems as though POTS differs substantially from the majority of the diagnostic criteria outlined for Panic Disorder (PD).

Where PD really begins to differ from POTS is in the psychological indications associated primarily emotional manifestations of PD, including the extreme feelings of fear or anxiety, losing control or going crazy, and even a fear of dying. According to the DSM-IV, the diagnostic criteria of PD either with or without agoraphobia includes the presence of both  recurrent and unexpected panic attacks that are not directly the result of substance abuse or a general medical condition (American Psychological Association, 2013). Additionally, individuals with panic disorder are often concerned and worried about the potential for a future attack, which can also lead to a variety of behavioral changes in an individual as a way to compensate or cope with the fear associated with panic attacks. For example, patients with panic disorder with agoraphobia avoid a place or a situation for fear of the embarrassment associated with panic.

Gabor (1996) states that the most common form of PD is what Gabor has termed as the cardiac attack, which is often associated with symptoms of dizziness or lightheadedness, similar in presentation to many of the symptoms associated with POTS. The characteristic symptoms of PD, such as feelings of fear or panic, don’t come until much later when treatment is sought for this disorder. Gabor (1996) also mentions that the symptoms of PD can initially present similar to a variety of other disorder, also analogous to POTS, including the presentation of an abdominal attack that is typically marked with bouts of nausea and a variety of other gastrointestinal manifestations. Although patients with POTS may experience feelings of fear or anxiety similar to those in PD, it is common in individuals with any type of chronic illness because of the uncertainty in life, particularly in regards to their health and future.

In order to differentiate between POTS and Panic disorder, it may be easier to study the pathophysiological abnormalities to identify specific characteristics that medically define each of these disorders. For instance, neuroimaging studies have identified specialized regions in the brain that are likely responsible for the dramatic nervous system response initiated in PD patients. It was theorized that POTS patients should also display similar abnormalities in the brain as well. One study did find significantly lower amounts of gray matter in POTS patients in comparison to the healthy control group, primarily in the right middle frontal gyrus, although the volume of gray matter in the striatium and the right middle temporal gyrus were higher (Umeda et al., 2015). Additionally, the quantity of white matter in the left middle temporal gyrus was elevated in POTS patients as well. More importantly, though, Umeda et al. (2015) determined that there was actually a negative correlation between left insula volume and anxiety or depression scores, furthering the idea for autonomic dysfunction to result from abnormalities in the brain. Still, historical research identified inappropriate neurological activity associated with the flight-or-fight response, common in PD patients, mainly occurs in the amygdala and this part of the brain has yet to be identified in any of the physiology of POTS.

Heart rate, on the other hand, may be an easier feature to study. Both POTS and PD are associated with cardiac abnormalities, like heart palpitations and shortness of breath, stemming from problems with regulations of the autonomic nervous system. . The implementation of assessing heart rate variability of patients with PD could potentially supplement other forms of diagnostic testing, including serological and biochemical measures, to confirm a more accurate diagnosis of these disorders.  For instance, a study by Ito et al. (1999) identified a significantly higher heart rate in LF, HF, and TP levels during the tilt table testing. Former research has shown that these levels may indicate over activity of the sympathetic nervous system, resulting in the increased potential for panic-like symptoms to occur. Surprisingly, though, no differences were noted between respiratory measurements of patients in either the tilt table test or when in a resting position. Ito et al. (1999) speculated that this is likely due to the activation and response of both the sympathetic and parasympathetic nervous system, which often accompany one another to maintain homeostasis within the body. Based on the results of this study, Ito et al. (1999) concluded that reactivity of both systems of the autonomic nervous system may be prevalent in the early stages of PD, which could easily account for any discrepancies found in the autonomic responses of individuals with a longer history of PD as illustrated in earlier research studies.

Another study by Cohen et al. (2000) found that PTSD patients had both higher and lower heart rate changes than those in the control group, which they believed to “reflect a basal autonomic state of hyeractivation” (p. 7). Additionally, they found that subjects in the PD group also had higher and lower heart rate variability in comparison to individuals of the  control group, but they showed less fluctuation overall than those with PTSD. The PD and PTSD experimental groups both demonstrated a significantly higher low-frequency (LF) and a lower high-frequency (HF) component of heart rate variability than those in the control group as well. During periods of recalling stressful events, the PD subjects displayed greater intensities of sympathetic activity and decreased parasympathetic activities, which coincided with the findings in the control group. The PD subjects had also demonstrated “the expected increase in sympathetic activity upon standing, indicating that this component of baroreflex response improved with treatment, so that is was comparable to that seen in healthy control subjects” (Cohen et al., 2000, p. 9). Ultimately, the results of this study provided support to the researcher’s hypothesis that there would be marked differences between the nervous system’s response in those with either PD or PTSD

Psychological variations may also assist in demonstrating measurable differences in the presentation of POTS and PD symptoms. For instance, although POTS patients often mention past experiences with some symptoms commonly associated with panic attacks, Khurana (2006) theorize that these feelings corresponded to  increased orthostatic intolerance since resolution of symptoms occurred directly after testing had completed or when the subjects were placed back into supine position. Also, the POTS patients had no prior family history of PD, as well as the fact that many of the common cognitive symptoms accompanying PD (such as fear of dying or feelings of detachment) were not reported by the patients with POTS either, indicating negative correlation between the disorders. As expected, no symptoms were noted in any member of the control group of this study. However, the most interesting and influential finding of this study was that personality patterns were different between the disorders, with POTS patients scoring within normal limits, along with the control subjects, when evaluated during personality assessments.

In a different study, Masuki et al. (2006) hypothesized that the orthostatic stress experienced by patients with POTS was not a result of anxiety. In order to test their theory, the researchers used a number of psychological assessments often used for clinical diagnosis of anxiety disorders. To measure mental stress, the researchers administered the Stroop colored word test on a computer while measuring the subject’s heart rate, arterial pressure, and forearm blood flow. Additionally, psychological variables were evaluated using multiple questionnaires, including the Anxiety Sensitivity Index (to measure anxiety related sensations within the body), the Body Vigilance Scale (also to measure body sensations), and the Coping Strategies Questionnaire Catastrophizing Scale (to measure levels of catastrophic thinking patterns) (Masuki et al., 2006). In concluding the study, Masuki et al. (2006) found that patients with POTS demonstrated minimal variability from those of the healthy control group, especially in relation to either mental stress scores or the psychological indexes used primarily to diagnose anxiety disorders. The main different between POTS patients and healthy subjects was only present in terms of physiological responses during orthostatic testing. Essentially, these findings indicate that POTS is very much a physiological disorder and, therefore, not a result of an anxiety disorder, despite their similarities.

Summary

POTS patients experience a variety of problems associated with the etiology of their condition. About 85 percent of POTS patients having been told that their symptoms are either “all in their head” or they were sent for a psychiatric evaluation before they were diagnosed as having POTS. Often physicians misdiagnose or fail to diagnose POTS due to the presentation of its symptoms. The problems associated with misdiagnosis are obvious, leading to delay in care and even death in some cases.

POTS patients are commonly misdiagnosed as having Panic Disorder (PD) because the two conditions share a vague presentation symptoms associated with autonomic dysfunction. Since the characteristics of POTS can be attributed to a number of differential disorders, the ability of a doctor to determine a definitive diagnosis for patients is becoming difficult and the consequences of misdiagnosis are monumental.  Past studies evaluating both POTS and PD have provided insight to why these conditions are often confused with one another.

Essentially, it is hypothesized that investigating the symptoms associated with the primary response of the autonomic nervous system in both PD and POTS will identify key features as to the etiology of each disorder. Through measuring both the physiological and psychology factors mutually associated with these disorders, the results of this study could essentially contribute to improvement in the process of clinical diagnosis, giving back hope to the patients and trust about receiving appropriate treatment.

Method

Participants

This proposed study plans to measure and define specific criteria that could easily differentiate a diagnosis of either POTS or PD. Subjects in this study will be recruited primarily through physician referral from the University of Colorado (UCH) Anschutz Medical Campus located just outside of Denver, Colorado. Three groups of volunteers will be evaluated for this study: patients with POTS, patients with PD, and a control group. The POTS group will include a total of 20 patients given a formal diagnosis of POTS by the Cardiac Electrophysiological program at UCH. The PD group will consist of a total of 20 participants as well, 10 of which have been diagnosed with panic disorder with agoraphobia and 10 without agoraphobia, all of which will be referred from UCH’s outpatient psychiatry services. The final set of test subjects will be the control group, consisting of healthy patients recruited through the primary care avenue within the UCH network.

Procedure

Upon receiving approval and funding for this proposed project, screening for final selection of participation in the study will take place. In order to be eligible for this study, all participants must undergo both a physical and psychological exam prior to the start of this study in order to exclude any underlying conditions or comorbid disorders that could potentially influence the outcome of this research. The physical exam will include several forms of medical testing, such as an electrocardiogram, urinalysis, and common blood screenings. The psychological screening will then evaluate patient on elements of personality and anxiety levels by utilizing the Psychological Screening Inventory (PSI) and the Beck Anxiety Inventory (BAI) (Benet, 2014). Individuals found to have comorbid disorders, whether biological or psychology would then be excluded from participating in this study. The pre-exam process will aid in the overall control of possible extraneous variables that could potentially damage the outcome of this study, such as alcohol and drug use, for instance.

Both biological and environmental controls will be put in place to help ensure validity in the results of this study. Measurements will be taken at a set time during the morning hours over a 3 days period. The will be asked to not eat, drink, smoke, exercise, sleep, or consume caffeine at least 4 hours prior to beginning the study, since each of these elements could potentially affect metabolic activities within the body and, therefore, influence the overall results. Also, participants will be placed in a supine position for a minimum 15 minutes prior to the start of any orthostatic testing to decrease autonomic activity resulting from external factors (e.g. stress from driving to the study) and to habituate them to a laboratory setting. Environmental controls will also include the pre-exposure of participants to the sounds and equipment in the laboratory for approximately 15 minutes before any measurements are taken for this study to lower levels of both anxiety and arousal often stimulated in unfamiliar environments. Also, a consistent temperature of 72 degrees Fahrenheit will be maintained in the room during testing, since research has shown that this specific temperature is optimal for the majority of the human population. All of these outlined procedures are necessary to assure both the accuracy and strength in the experimental design.

Measures

            This study will evaluate the three subject groups on a variety of physiological and psychological measures in order to compare and identify the essential differences between groups in hopes of classifying specific factors that can later be used to either diagnose or differentiate between the characteristics associated with both POTS and PD. Physiological variables will be evaluated using specific medical diagnostics, including the use of a tilt-table test, an MRI, and blood serum analysis.

A tilt-table test is often ordered to evaluate orthostatic intolerance and other potential causes of fainting. Following the initial control measures listed above, patients in this study will begin in a supine position for a minimum of 20 minutes. Heart rate, blood pressure, and respiration will be recorded throughout the study. Before moving each patient, blood will be drawn to measure baseline amounts of catecholamines, specifically epinephrine, norepinephrine, and dopamine. Measurements will continue to be taken on all variables at intervals of five minutes following tilt into an upright position. Subjects will be left upright for a total of 45 minutes and variables will once again be documented upon returning to a supine position. Any symptoms experienced throughout the test will also be freely recorded as reported by each subject. If clarification is needed, subjects will be asked to further specify experience of feelings.

In addition to testing for orthostatic intolerance in the tilt-table test, this study will utilize an MRI machine to determine if any regions of the brain show any type of abnormality or either an increase or decrease in activity which may potentially identify any of the two disorders of interest. Patients will be placed into the apparatus following initial control procedures. The first set of imaging will be taken in silence to get a picture of the brain without stimulation. Once this is complete, the patient will then listen to an assortment of music through the use of headphones, including classical music, pop music, country music, and heavy metal. Each genre is meant to represent common emotional responses known to either stimulate or diminish activity in different parts of the brain.

The psychological measurements of this study will include two types of assessments commonly used to evaluate the severity of symptoms as they are perceived by each individual participant. The two forms selected for this study include the Panic Disorder Severity Scale (PDSS) and the Wahler Physical Symptoms Inventory (WPSI) (Benet, 2014). Formatted as a self-reported questionnaire, the PDSS is a common instrument used by both medical and psychiatric professionals to assess and diagnose patients based on the levels of symptoms consistent of patients with PD. To review a list of questions measured by this questionnaire, please refer to table 1. Alternately, the WPSI is a test that is designed to measure both the degree of both physiological and somatic symptoms self-reported by each participant of the study, with focus on differentiating between potential psychological disorders and those of a somatic nature. Again, to review an example of questions reviewed in the WPSI assessment, please refer to table 2.

Discussion

Ultimately, the results of this study should support our hypothesis that there would be marked differences between the nervous system’s response in those with either PD or POTS when evaluated through neurological, psychological, and biological testing. It is expected that this study will clearly show how autonomic symptoms should differ, seeing as though POTS is a physiological dysfunction while PD is more consistent with fear and a catastrophic thought process. The medical testing proposed in this study is also expected to back up this idea.   By highlighting both the similarities and the differences between POTS and PD, the results of this study could help by easing the process for obtaining a clinical diagnosis while ensuring that patients with either disorder are not left misdiagnosed. Additionally, any contributions to the limited literature available on POTS can hopefully one day lead to a cure for this condition. Nevertheless, the main focus of this study still remains in isolating definitive features to differentiate POTS from PD.

Although this proposed study takes extra measurements to ensure validity, it is not free from limitations. For instance, despite the fact that the proposed research does consists of a relatively moderate population size given the complexities of this study, there is still the potential for bias in the selection of  participants since all of the patients are being recruited through physician referral of patients receiving treatment in one specific state – Colorado. Additionally, while this project attempts to eliminate patients with comorbid disorders during the initial selection process, the medical diagnostics used in screening may not identify every possible disorder that could potentially influence the results. Finally, self-reporting on the psychological assessments will be completed by paper and hand-scored for this project, and, therefore, could be subjected to operator error. Despite these limitations, though, this project opens up the possibilities for future research into the nervous system response seen in patient with both PD and PTSD.

Prospective research is going to be needed to better understand and implement the initial findings of this study, particularly in identifying additional differential diagnoses and comorbid conditions. Earlier studies have identified the possibility that patients can, in fact, have a dual-diagnosis of both physical and mental health related disorders, including patients with both POTS and PD. For instance, in a case study by Kataoka (2001) described a patient that not only met the diagnostic criteria both POTS and PD, but also demonstrated both disorders through a variety of testing. During a tilt-table test, the case subject began to experience symptoms almost immediately after initiating the head-up tilting of the table and the patient’s heart rate immediately increased from 79 beats per minute up to 140 beats per minute, confirming the diagnosis of POTS. Most interestingly, though, was that there seemed to a correlation between the number of symptoms experienced and the amount of time that the patient was placed in a head-up position. At the 21-minute mark, the patient had a “panic disorder-like reaction”, which consisted of crying, hyperventilating, numbness in the extremities, pre-syncope, and feelings associated with fear (Kataoka, 2011).

Also surprising was the fact that the whole time this exaggerated reaction was occurring,  the patient’s measurements of catecholamine blood serum levels increased along with her vital signs: epinephrine increased from 82ng/ml at baseline to 269 ng/ml; dopamine increased from <10 ng.ml to 28 ng/nl; and norepinephrine showed the most drastic change from 301 ng/nl to 585 ng/nl (although the serum concentration and the age on onset did not exemplify the diagnostic criteria for an extremely rare form a POTS known as hyperadrenergic POTS)  (Kataoka, 2011). Also, measurements of arterial blood gases throughout the study suggest that severe hypocapnia and a higher pH occur alongside the presence of an experienced panic attack (Kataoka, 2011). Based on the results of this study, Kataoka (2011) ultimately concluded that:

The etiology of the syncope was orthostatic tachycardia syndrome complicated by panic attack-associated hypocapnic hyperventilation, which presumably caused a greater degree of deep cerebral hypoperfusion than would be expected with orthostatic tachycardia alone, ultimately leading to the patient’s symptoms, including syncope. (p. 91)

Given this information, it may be wise to further assess these variables to see if there are changes across larger populations of study.

Finally, another approach that may be effective in evaluating both POTS and PD is to examine how cultural differences and expectations influence the presentation of symptoms in these disorders.  Although there have been a number of studies in more recent years that examined cross-cultural differences and their influence on anxiety disorders, this topic of study has not been actively documented in relation to patients with POTS.  However, one study did take a similar approach by assessing the presence of orthostatic intolerance during panic attacks. Hinton, Pollack, Pich, Fama, & Barlow (2005) chose to study Cambodian refugees due to alarge number of individuals of this population being treated in mental health clinics all over the United States. Cambodian refugees are predominantly diagnosed with Post Traumatic Stress Disorder (PTSD) and Panic Disorder (PD) at significantly high rates due to events occurring prior to arriving at the United States. According to Hinton et al. (2005), “trauma seems to predispose to panic attacks, initially, during the trauma, by conditioning arousal to specific interoceptive and exteroceptive cues, and subsequently, by producing persistent arousal” (p. 301). Additionally, the researchers believed that orthostatic intolerance occurred during these attacks based on the presentation of the perceived nature that the panic attacks were culturally specific, perceiving feelings of dizziness or instability as a primary symptom.

The results obtained by Hinton et al. (2005) did identify the positive correlation between orthostatic panic and catastrophic reasoning as the researchers originally hypothesized. Current amounts of perceived panic were elevated in the majority of refugees, demonstrating no difference between genders. Also, the SCL-90-R showed high levels of not only PTSD and PD, but generalized anxiety, phobic anxiety, somatization, and depression as well. According to Hinton et al. (2005), associated flashbacks and catastrophic cognitions not only mediated an increased orthostatic panic response but also seemed to be an indicator to overall psychological functioning as well.


References

Benet, W.E. (2014). Tests used for psychological assessment. Center for Psychological Studies Library. Nova Southeastern University. Retrieved on October 11, 2015 from http://www.assessmentpsychology.com/testlist.htm

Cohen, H., Benjamin, J., Geva, A. B., Matar, M. A., Kaplan, Z., & Kotler, M. (2000). Autonomic dysregulation in panic disorder and in post-traumatic stress disorder: Application of power spectrum analysis of heart rate variability at rest and in response to recollection of trauma or panic attacks. Psychiatry Research, 96(1), 1-13. doi:10.1016/S0165-1781(00)00195-5

Craske, M., Wittchen, U., Bogels, S., Stein, M. & Lebeu, R. (2013). Severity Measure for Panic Disorder – Adult. American Psychiatric Association. Retrieved on October 11, 2015 from http://www.appi.org

DSM-IV. American Psychiatric Association. (1994). Diagnostic and Statistical Manual of Mental Disorders (4th ed.). Washington, DC.

Dysautonomia International. (2014). Physician Patient Interaction in Postural Orthostatic Tachycardia Syndrome [PDF document]. Retrieved from Lecture Notes Online Web site: http://www.dysautonomiainternational.org/pdf/PhysicianPatientInteractionInPOTS.pdf

Dysautonomia International (2012). Ten Facts Doctor’s Should Know About POTS. Retrieved on October 4, 2015 from http://www.dysautonomiainternational.org/page.php?ID=180

Gábor, S. P. (1996). The cerebral and abdominal forms of panic disorder and their differential diagnosis. European Neuropsychopharmacology, 6, 205-206. doi:10.1016/0924-977X(96)88267-8

Hinton, D. E., Pollack, M. H., Pich, V., Fama, J. M., & Barlow, D. H. (2005). Orthostatically induced panic attacks among Cambodian refugees: Flashbacks, catastrophic cognitions, and associated psychopathology. Cognitive and Behavioral Practice, 12(3), 301-311. doi:10.1016/S1077-7229(05)80052-5

Ito, T., Inoue, Y., Sugihara, T., Yamada, H., Katayama, S., & Kawahara, R. (1999). Autonomic function in the early stage of panic disorder: Power spectral analysis of heart rate variability. Psychiatry and Clinical Neurosciences, 53(6), 667-672. doi:10.1046/j.1440-1819.1999.00623.x

Kataoka, H. (2011). A case of orthostatic tachycardia syndrome presenting with panic attack during tilt table testing. Cardiology, 120(2), 91-94. doi:10.1159/000333131

Khurana, R. K. (2006). Experimental induction of panic-like symptoms in patients with postural tachycardia syndrome. Clinical Autonomic Research, 16(6), 371-377. doi:10.1007/s10286-006-0365-0

Low, P. (2015). Overview of the Autonomic Nervous System. The Merck Manual of Diagnosis and Therapy Online (Professional Edition). Retrieved on October 11, 2015 from http://www.merckmanuals.com/home/brain-spinal-cord-and-nerve-disorders/autonomic-nervous-system-disorders/overview-of-the-autonomic-nervous-system

Masuki, S., Eisenach, J.H., Johnson, C.P., Dietz, N.M., Benrud-Larson, L.M., Schrage, W.G… Joyner, M.J. (2006). Excessive heart rate response to orthostatic stress in postural orthostatic tachycardia syndrome is not caused by anxiety. Journal of Applied Physiology, 102, 896-903. doi: 10.1152/japplphysiol.00927.2006

National Organization for Rare Disorders (2015). Resources and Frequently Asked Questions. Retrieved on October 4, 2015 from https://rarediseases.org/for-patients-and-families/information-resources/resources-faqs/

Singh, H., Meyer, A.N., & Thomas, E.J. (2014). The frequency of diagnostic errors in outpatient care: Estimations from three large observational studies involving U.S. adult populations. BMJ Quality & Safety, 0: 1-5. doi: 10.11136/bmjqs-2013-002627

Smith, C.W. (2013). The real problem with misdiagnosis. Journal of Participatory Medicine. Retrieved on October 4, 2015 from http://www.medscape.com/viewarticle/782258.

Spector, P.E. & Jex, S.M. (2007). Physical Symptoms Inventory: PSI Page. Retrieved on October 11, 2015 from http://shell.cas.usf.edu/~pspector/scales/symppage.html

Umeda, S., Harrison, N. A., Gray, M. A., Mathias, C. J., & Critchley, H. D. (2015). Structural brain abnormalities in postural tachycardia syndrome: A VBM-DARTEL study. Frontiers in Neuroscience, 9:34.  doi:10.3389/fnins.2015.00034


Table 1

The Panic Disorder Severity Scale (PDSS)

PD

Table 2

Physical Symptoms Inventory (PSI).

During the past 30 days did you have any of the following symptoms? If you did have the symptom, did you see a doctor about it?

During the past 30 days did you have?

No Yes, but I didn’t see doctor Yes, and I saw doctor
1. An upset stomach or nausea
2. A backache
3. Trouble sleeping
4. A skin rash
5. Shortness of breath
6. Chest pain
7. Headache
8. Fever
9. Acid indigestion or heartburn
10. Eye strain
11. Diarrhea
12. Stomach cramps (Not menstrual)
13. Constipation
14. Heart pounding when not exercising
15. An infection
16. Loss of appetite
17. Dizziness
18. Tiredness or fatique

All scales are copyright Paul E. Spector and Steve M. Jex, All rights reserved, 1997.

I Will Let The Wind Decide…

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Everything is a difficult decision, at least to me. 

I’ve struggled with indecisiveness my whole life, but it seems to be getting worse the older I get. Simple things, fun things, everything… becomes such a chore because I spend more time thinking and worrying about it than actually enjoying myself. Granted, I’ve always been extra cautious my whole life, but I think a lot of this also comes from being sick my entire life. I’m afraid to pick or do the wrong thing, have regrets, or even worse- disappoint somebody that I love. It’s a constant battle that is raging inside of me and it’s becoming extremely exhausting.

Here’s a good example: we purchased a new bed this weekend because I’ve had trouble sleeping for months. When you’re sick, there’s nothing more that you want than to just relax and sleep, sometimes all day. There’s nothing more in this world that I love more than sleeping (okay, maybe that’s not 100% right but you get the idea). Still,  I literally can lay in the bed for hours- in pain, not sleeping- all because of the current condition of our bed. To be fair, our current bed was a hand-me-down from my brother, so it’s quite old to begin with. The bed frame, made of wrought iron with faded paint, is broken. The queen mattress sags in the middle now, so we tried to compensate for it by adding a 4-inch memory foam mattress pad (and not one of the cheaper ones either) . All of this has been tolerable, that is, until the rashes, muscle pain, and arthritis increased tremendously  for me over the last 6 months or so.  The mattress pad itself is probably the worst, though, as it is so thick and dense that it is actually harder than the mattress itself. Needless to say, after being unable to sleep (even an hour) for three days straight last week, my husband and I decided to bite the bullet and bought a new bed.

Luckily, we got a smoking deal on a king sized pillow top mattress that is mixed with memory foam (the soft kind). It was the highest end model (and most expensive) they had in the store, but it was still way cheaper than the Sleep Number, Temper-Pedic, and all the other mattresses we had looked at online that we knew we could never afford (Have you seen the new Sleep Number bed -the X12– Holy cow!). Anyways, we got the perfect king mattress that feels like we’re sleeping on a cloud, with the platform leather base, and delivery for less than the average cost of a twin mattress from most mattress stores. It should be delivered this week once the next shipment comes in. I haven’t been this excited about ANYTHING in so long, I can’t even remember.

Picking out the new bed was easy because I wanted the exact opposite of what we have now. The problem then lies in buying new bedding for it, as all we currently own is for a queen size bed (not to mention the linens needed to be replaced as well). Sure enough, three days later, and I’m still searching for the “perfect” bedding. There’s too many options: what is the best I can get for the money? I don’t want to spend too much (the bed was more than I should have spent, but needed). What look am I going for? I like so many things and have too many ideas. And why are the 75,000 mattress protectors, 30,000 sheet sets, and 500 comforters in the color I want. It’s just too much! It’s driving my husband crazy. But to me, I don’t want to put “cheaply” made bedding on a brand new bed. Plus, the bed linens set the stage for the feeling and design of the bedroom. Ugh, I just can’t decide. I don’t want to PICK the WRONG thing.

Now hours (days) into my quest for new bedding, I still have nothing in my online shopping cart as I’m left both tired and feeling like a complete failure. Oddly enough, it feels oh so familiar to my ongoing search for a diagnosis. Is there anything in my life that is simple? -Nope-

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Why is it so hard to make decisions?

In life and in chronic illness

Those of us living with a chronic illness have to not only make the everyday, regular decisions (like the rest of the population), but we also have the added burden of having to make complicated choices about our overall healthcare and well-being. Although deciding on which new bedding to buy may not be the easiest decision in the world (as I learned this weekend), imagine how much harder it is, then, to be sick with a chronic condition and every healthcare decision you make could result in truly life or death consequences. Talk about pressure! It’s no wonder that both myself and many others in similar situations have such a hard time getting past indecisive behaviors.

Think about it:

  • We make so many choices in day-to-day life around our conditions.
    • Will I take these medications the doctor prescribed, despite the side-effects?
    • How is my energy best spent today: cleaning the house or visiting with a friend?
    • Do I have enough spoons to make it through the day?
    • Should I call the doctor about this symptom or wait to see if it gets better?
    • Will I eat healthy today? Will I eat at all?
    • Maybe I’ll just go back to bed…
  • We also make decisions that could impact the future of our health and quality of life.
    • We put our bodies through hell with testing, medications, experimental treatments, etc.
      • Exposure to too much radiation or nuclear medicine (there’s a reason that radiology techs always wear protective gear and are monitored while they are working).
      • Many of our medications are serious stuff and could have long-term or devastating effects.
        • some medications are highly addictive.
        • some medications are capable of shutting down your organs over time.
        • some of us even take doses of chemotherapy to help our conditions.
        • most of our prescriptions are for a lifetime.
        • and more importantly, we could die without some of these medications.
      • To have surgery or to not have surgery: that is the REAL question.
    • Balancing budgets and financial obligations can be hard.
      • Sometimes we miss days, weeks, or months of work because of our illness. Some of us can’t even work at all.
        • no work = no money, plain and simple.
      • Healthcare is not cheap. Medical bills add up.
        • if you’re chronically sick then you are also “chronically” visiting the doctor’s office or hospital.
          • not just any ordinary doctor’s office, of course, but more often than not we are seeing specialty doctors – in every field of medicine.
          • and not just any hospitals – specialty hospitals, world-renowned hospitals, and even research hospitals.
        • prescriptions can be expensive as well. And we need them. See above.
        • some us  also need accessibility equipment or certain items to help manage our conditions:
          • handicapped rails.
          • adjustable beds.
          • home care or nursing.
          • compression socks or stockings (anywhere from $10-150 a pair – for socks!)
          • specialized diet foods.
          • service animals (and the extra pet care costs).
          • pill counter or alarm.
          • medical alert accessories.
          • books or videos on management or therapy.
          • a new bed (just kidding!), but the list can go on and on depending on the person’s condition or individual needs.
  • We want to have a sense of control since we have lost control over so many other things in our lives.
    • I know what you’re thinking… it doesn’t make sense. Or does it? 
      • We want to get the control back because we feel like we have lost it. However, having full control over life requires a lot of work and is often a huge burden. Sometimes fear can get the best of us when we perceive that the world is in our hands. This added stress then makes us question ourselves and lose confidence in the choices we make. Once confidence is gone, it becomes harder to make decisions, thus back to feeling like we have no control once again. Ultimately, it’s a vicious circle.
  • And our choices not only affect our own lives but the lives of our loved ones as well.

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Given the amount of pressures we face, it’s not at all surprising that a lot of us are quite indecisive then, is it? Still, in addition to what is mentioned above, there are many other factors that can influence one’s inability to make decisions:

  • Anxiety about making the wrong decision.
  • Not wanting to disappoint others with our choices.
  • Fear of change.
  • Need for security.
  • Too many options offered in our modern society (i.e. bedding).
    • and technology makes everything both easier and complicated at the same time.
  • Expectations of perfection.
  • Fear of rejection or failure.
  • Low self-esteem.

44f76732474693922c819855d1f9859eSince being sick often requires a great deal of planning, over-thinking, and decision-making, it would be nice to have the ability to take a break once in a while.  How nice would it be to have someone else make the important decisions for us once in a while? I can’t even count how many times I’ve said to my husband or my friends, “Just tell me what to do!”. Obviously, it’s not always that simple.  When it comes down to it,  these decisions involve your body and your life, and therefore, they are your choices to make and your’s alone (unless, of course, your underage and/or not medically able to make your own decisions legally). Learning how to manage the anxiety and stress that comes with chronic illness will help tremendously in many aspects of life, as well as in learning to cope with indecision.

How can I stop being so indecisive?

I found some great, detailed info from House of Insights that outline some steps that can be taken to overcome the inability to make decisions. According to Lorna Atkinson, the author of the article entitled 12 Tips To Overcome Indecision, “the key to making empowered decisions is to know yourself. The more aware you are of your personal biases, habitual thoughts, feelings and emotional states the greater your ability to avoid old patterns and tendencies.  By disrupting old patterns, we also disrupt automatic responses and behaviors.  This makes room for a fresh perspective free of past references which greatly enhances the chances of making informed decisions.

1. Know your patterns. Constantly thinking the same way programs the brain to respond in a fixed manner by flooding the body with a chemical/hormonal cocktail that produces the feelings compatible with your repetitious thoughts. We get hooked on our own thoughts and emotions that loop and feed one another.

Only by monitoring your patterns to be aware of them will you have a chance to override them and their related feelings.

2. Discernment. Learn how to approach information with a critical mind and discern between beliefs, opinions and facts. Develop the ability to see the situation objectively by taking your personal preferences, biases and fears out of the equation.

3. Bust confirmation bias by stepping back and looking at the big picture.
Confirmation bias is our inclination to favor information that supports our beliefs – which is not a good thing if our beliefs are inaccurate or outdated. Cultivate the ability to bypass the brain’s filtering system by considering multiple alternatives, not just one or two

4. Modeling the successful solutions of others.  Investigate what others in a parallel situation have done and model their procedures, with your own personal twist of course.

5. Change your perspective. Play devil’s advocate and consider the opposing view point.

6. Get some distance from the problem. Sleep on it and re-evaluate by looking at it from various points of time in the future such as in a week, a month and a year. Thinking long-term helps to bypass the emotional pull of short-term solutions.

7. Write it out. With pen and paper, free associate to resolve inner conflicts. The simple act of writing gets the thoughts out of our head and seeing them on paper helps to settle confusion.

8. Wait a bit. Don’t waste time and energy stewing on it before the decision is needed. Usually, new info will come in that makes the decision easier.

9. Make a commitment. Be accountable to yourself or someone else to bolster your determination.

10. Turn your problems into opportunity. Accept what is and look for the silver lining. what possibilities does it offer to move you in the direction you desire? Or to learn and grow?

11.  Ask yourself better questions. Know the four basic questions to ask when faced with a decision:

  •   alternatives – what is possible? Or probable? Or impossible?
  •   expectations – what consequences will follow?
  •   preferences – what is the inherent value of the consequences?
  •   decision rule – how is a choice to be made?  What are the strategies to be employed? What are the loss functions of each action?

12. Be a nonconformist. Conformity is the urge to “fit in” and belong to a group, the result of real or imagined group pressure.  It’s driven by social anxiety and the individuals’ desire for status. And while group loyalty has its’ place, it has its’ perils as well.  Such as committing to an idea that you don’t really believe and deferring individual interests to the well-being of the group. Often, we don’t even ask ourselves if we really benefit from the group affiliation. To make powerful decisions, learn to value your independence and self-sufficiency.  Your decision must first benefit you, then the group.

Now that we have the basics to consider when faced with making a decision, those situations that used to be frightening and challenging for us are now a platform for practicing the steps to make empowered decisions.

Use the tips above and start with small decisions. Making small decisions will build the characteristics of self-esteem, confidence, and self-reliance.  And these traits help develop the emotional makeup necessary to be successful in life.  And once we have some success with our new procedures, making the big, important decisions will be much easier in the future” (Atkinson, 2013).

Remember:

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Welcome to the new age, to the new age…

The anticipation had been killing me, but I finally received the call that I had been eagerly waiting for from the vascular surgeon. I was in my therapist’s office when the call came in, but luckily she was kind enough to let me take it since she knew it was something I had long been waiting for. I think she was curious herself. Needless to say, it was probably a good thing I was in her office when the call came in, as I was not a happy camper.


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He started by saying he looked at my CT Angiography results and he had spent some time doing research, as well as talking to fellow vascular surgeons. 

Good.  I figured he had some research to do, considering the result. 

He goes on to say my renal vein definitely shows a large amount of compression.

Okay, go on.

He asks how I’ve felt lately.

“Terrible.”

“Remind me of your symptoms again?”

*sigh*

“Well, I have had horrendous stomach pain every day.

I’m nauseous constantly.  

I can’t eat anything without being sick. I don’t digest my food.

I have diarrhea and/or constipation that is limiting.

I am tired all the time. And not just tired, EXHAUSTED.

Dizzy, heart palpitations, spinning, and chest pain.

My limbs go numb. I have arthritis. My legs are stiff and painful.

I have livedo reticularis. 

I have painful rashes. They are getting worse and change day-to-day.

My hands are now so blistered I can barely hold on to anything…”

He says, “well none of those explain Nutcracker Syndrome…”

“Right. I haven’t had hematuria in years. Just the back pain and left, flank pain. Abnormal, unexplained bleeding. But all my abdominal pain is on my left side…

“So yeah, nothing relating to the Nutcracker Syndrome. Like I said before, I don’t believe in it.”

“What about the Superior Mesenteric Artery Syndrome? Or the May-Thurner? Both were noted in the results.

“I saw it, but I don’t believe they are the cause of your symptoms” he says.

“Well, SMAS can cause severe abdominal pain, nausea, anorexia, vomiting…”

” No vascular compressions typically causes any symptoms at all. None of us (vascular surgeons) believe that these ‘syndromes’ exist.”

“Oh…”

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“Besides, on the small chance that these conditions even exist, they are so rare. It’s not possible for you to have all three. “

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So the report it wrong? Because it says I have all three.

I felt my face getting really red. I didn’t know whether to cry or scream.

“I think whatever you have is systemic.”

“But it’s not showing in my blood work. If it was systemic, you’d think my blood work would show it…”

(I think this to myself, but I can’t say it out loud. I’m too frustrated and  taken off guard to even say almost anything at all)

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“Like I told you during the consult, I want to take a very ‘conservative approach’ to this. I don’t suspect the Nutcracker syndrome is causing your illness. I suggest you continue looking for the cause of your illness elsewhere. After you have exhausted everything else possible, then come back and I’ll re-examine you again. If at that time, you don’t have a diagnosis despite exhausting all other options, then we can go ahead and try to balloon the vein and see if there is any relief.”

“Okay. Thanks for calling.” I hang up.

I’m positive that there was no hiding the disappointment and  sadness in my voice during that call.

I don’t care though. Maybe it’s something he should hear. Not that he cares.

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I am beside myself at this point. I can barely breathe, my chest is tight, and I have no idea what to do.

So let me get this straight…

All these world-renowned doctor’s, who have researched these disorders extensively, don’t know what they are talking about?

The Mayo Clinic, The Cleveland Clinic, and The NIH know less than you, is that correct?

All the patients in my support groups are just lying about their symptoms?

Everyone in the Nutcracker Syndrome Group?

The Superior Mesenteric Artery Syndrome Group? The Wilkie’s Group? SMAS Support?

The May-Thurner Syndrome Group as well?

Not to mention these patient’s doctors (world-wide) who not only diagnosed them with these “imaginary” syndromes but also are treating them for it too. Are they lying?

The invasive surgeries that these patients have undergone, their feeding tubes that have saved their lives, their medications… Is it all for nothing?

All of those people with these ‘non-existent’ disorders, particularly SMAS, that have lost their lives to these conditions… must have never existed either, right? 

What a crock of sh*t!

{Excuse my language.}

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I debate on sending him all the research and case studies I have found.

There’s so many, but it probably wouldn’t matter anyways.

GARD Superior Mesenteric Artery Syndrome

Superior Mesenteric Artery (Wilkie’s) Syndrome as a Result of Cardiac Cachexia

Wilkie’s Syndrome

Wilkie’s syndrome causing persistent vomiting

Patient with Both Wilkie syndrome and nutcracker syndrome

Nutcracker Phenomenon and Nutcracker Syndrome

Case Report: Nutcracker syndrome: A rare anatomic variant

Current trends in the diagnosis and management of Renal Nutcracker Syndrome: A review

May-Thurner Syndrome

The list goes on and on…

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I feel panic inside. Now, what do I do? Where do I go from here?

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I tell my therapist what was said. Of course she thinks this is crazy. At least it’s not just me. She has looked into every condition and every medication the doctors have mentioned or I’ve found in my research. This is why I like her so much and why I continue to keep going. She tries to understand me. She respects my opinions. At least there’s someone.

I see her look down at my hands and legs. My hands are red, swollen, peeling, and visibly painful. My legs clearly look bruised in spots, with purplish-molted discoloration.  

She asks me, “what’s next?”

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I have composed myself by this point. No point in breaking down, anyway. There’s nothing I can do to change this doctor’s mind. Plus,  I’m used to being disappointed by doctors. He’s not the first one to not believe me, or give up on me. Sadly, he probably won’t be last either. 

“I find another vascular surgeon. Get a second opinion. I start over… again.”

“How do you feel about that?”

“I’m just tired of it, really. I feel nothing anymore. You get so close, then hit a wall. Over and over again.”

“That’s frustrating. It shouldn’t be that way”

“No, it shouldn’t. It’s unfair and it sucks, but that’s the reality of it. This is how it is to be chronically sick. Normal people don’t see this side of healthcare in their yearly check-ups or their infrequent appointments for a cold or flu. But we (those with chronic illness) deal with it every day.  Every day is a fight to get the proper care. These doctor’s don’t care. Health care in the United States was not meant for us (chronically ill). Yet, we keep fighting, who know’s how. Probably because there is no other choice. What else can you do?”

I lean further back in my chair. I’m not hiding my frustration or disappointment well. I know she understands, or at least can acknowledge,  how I feel. This alone makes me feel better. Well, at least better enough not to scream or cry, which was my initial reaction to the news. Even though I have had plenty of time to process what was said by now, I’m still in a bit of shock.

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As per usual, today was spent picking up all the pieces.

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I called multiple vascular surgeons all over the entire state and I found a few actually in town that accepted my insurance. Although I know an in-state doctor more than likely won’t have a great deal of expertise on any of my conditions, it’s the only option I have currently. I’d prefer to see one of the very few doctors (all in the highly accredited and well-known clinics across the country) that specialize in these disorders, but my insurance won’t pay out of state and it’s just not feasible for me financially. At least not at this time, maybe ever.  

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I made sure to ask them if they had surgeons who were familiar with ‘rare vascular compression disorders’. Of course, a lot of explaining of the conditions ensued and I had to be placed on hold multiple times while they asked the doctors, but I found two potential offices that may be able to at least give me a second opinion. They need another referral, however, which wouldn’t be an issue if my primary care office would actually answer their phone so that I could schedule an appointment with my doctor. But alas, both yesterday and today I got the infamous voice mailbox that literally goes nowhere. (There’s no actually recording, just a beep to leave a message. And every time I do leave a message, I NEVER get a call back) I guess I’ll try back on Monday.

Thankfully, Monday is the start of a new week.

It’s a good day to start from the beginning, once again.

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