Dear readers, recently I’ve been experiencing yet more medical issues. During my research on my potential new diagnoses, I made a rather startling connection. My mind has been blown with what I’ve discovered. Today, this post may be a bit of a rant as I connect all the dots. It took me five years to make all these realizations.
My entire life I was ruled by responsibility, I even accepted responsibility for things that weren’t my fault – just to keep the peace between the man who donated his sperm for my mother’s eggs and his bed-warmer. I try not to hate him or blame him and accept responsibility for my own well-being but I’m in a place in my life where I can longer ignore his role and it makes me mad. Livid, really. From the beginning of my existence, SHE told me there was “nothing wrong” with me and to stop being a hypochondriac like my grandmother. I believe, truly that neither of them really wanted to raise children – they just seemed to want a maid (her) and to not die alone (him). None of my needs were met by them. They didn’t even believe in ADHD, and I see now that I got punished for things that were completely out of my control because they believed I lacked discipline. Raising my kids now makes me hate them both even more. With each diagnosis or genetic disorder, I’m left feeling depressed, let down, abandoned, used, and abused.
I won’t get into the science or anything like that, but trust that everything I write here and how it relates to me is based in real science. Medical science.
The vagus nerve is at the root of everything that is shit in my life. The vagus nerve is the main component of the parasympathetic nervous system, which oversees a vast array of crucial bodily functions, including control of mood, immune response, digestion, and heart rate. The thoracic and abdomen cavity is impacted by the function of the vagus nerve, decreasing heart rate, bronchoconstriction, and increasing gastrointestinal activity. Trauma has a way of holding onto us. It puts us on edge and keeps us in a persistent state of fear–in part by overwhelming the vagus nerve’s ability to keep us calm. The vagus nerve helps the body recognize when a threat is no longer present, but this process can be disrupted by trauma – like c-PTSD. Trauma disrupts the function of the vagus nerve(s) and can lead to dysfunction in other parts of our body.
- Messages we receive from outside of our body may impact our heart rate, i.e., trauma and complex trauma.
- Heart rate may decrease due to dissociation-a relationship may exist between the heart and dissociation symptoms. This is how I survived my childhood – I dissociated. I still do that today when I get overwhelmed with life.
- The content of a trauma memory may contribute to the heart decreasing to a harmful level, i.e., less than 60 beats per minute.
- Trauma memory leads sometimes to the production of excess stress hormones that lead to physiological effects (e.g., thyroid, gastrointestinal issues, and asthma symptoms).
- Environment cues impact physical reminders of safety (or lack of safety).
Enter the parasympathetic nervous system and the vagus nerve. The vagus nerve, which travels from the base of the brain down to the organs and muscles, sends signals to the body to slow heart rate, lower blood pressure, and otherwise calm the body down. Mine is pretty broken, but I’m learning, in therapy to change my automatic responses. It takes a lot of hard work and it’s taking a really long time. It stresses me out.
Complex trauma (complex PTSD / c-PTSD) refers to exposure to multiple traumatic events that are severe and ongoing, such as exposure to domestic violence, childhood abuse – physical, sexual, emotional or neglect of a child’s basic needs (like love and affection, being taken to a real medical doctor when ill, etc.).
While many people think of trauma as being a mental or psychological experience, trauma is also “stored” in the physical body–think “muscle memory.” And, because of the mind-body connection, our mental and physical experiences can feed off each other. The force of this is very strong in me.
Your emotions have a direct influence on the activity of your parasympathetic and sympathetic nervous systems, meaning that they also impact associated organ systems. Trauma is frequently associated with depression and anxiety via vagus nerve activity–or lack thereof. This is because the vagus nerve is responsible for counteracting stress, for me i was never NOT in a state of stress so my body doesn’t know what to do with that. Sometimes I end up sabotaging myself for a familiar reaction.
Trauma can cause us to get “stuck” in the fight-flight-freeze response. Following a traumatic event, our body starts to more frequently anticipate threat which is why I’m often very jumpy or startle very easily. The vagus nerve may not inhibit this fear response as it would before the traumatic event–its normal functioning simply may not suffice after trauma. This physical change to our nervous systems happens in our body’s attempt to prepare us for future threatening events. For ideal well-being, we want to cope with, process, and eventually accept or move on from our trauma. Being stuck in a fear response keeps us stuck in coping mode. That means we don’t get the chance to heal and move forward. I feel like I’ve done a lot of work on this, and I still have a lot to do. In therapy, I work on remembering how I was treated, identifying the emotion, and crying through it then I can actually SEE and realize how wrong it was and how shitty and unprotected my father left me which makes me cry all over again. When I’m done crying and I feel I can move on my body feels like it released some anger and hurt.
Feelings of safety emerge from inside the body, and humans, are on an enduring lifelong quest to feel safe. C-PTSD symptoms may be viewed as the product of a reconditioned autonomic nervous system that developed during extreme and/or repeated exposures to threat like when an individual’s sense of safety, or danger is sensed.
When humans feel safe, their nervous systems support homeostatic functions of health, growth, and restoration while they become accessible to others without feeling threatened and vulnerable. When the nervous system detects danger during a traumatic experience, a withdrawal of the parasympathetic system is initiated in the fight-or-flight response as a protective mode. While the fight-or-flight response is adaptive in acutely dangerous and life-threatening situations, in the context of everyday life, it can become damaging.
In environments that are considered safe, a chronic fight-or-flight state is maladaptive and may lead to significant hypervigilant psychosocial distress and poor health outcomes. Post-traumatic stress disorder (PTSD) is a maladaptive, debilitating neuropsychiatric condition that involves the dysregulation of normal fear processes. Patients with PTSD often experience abnormal fluctuations in the autonomic states that influence the fight-or-flight behaviors of withdrawal, immobilization, and dissociation without an intervening calm state. The symptoms of PTSD for me, often include persistently re-experiencing the traumatic events, intrusive thoughts, flashbacks, dissociation, and an intense negative emotional and physiological reaction to being exposed to the traumatic reminder. Problems with sleep and concentration, irritability, increased reactivity, increased startle response, hypervigilance, and an avoidance of traumatic triggers also occur.
Over time, changes in autonomic, endocrine, and immune function contribute to deteriorating health, which may be expressed as mental health disorders, asthma, cancer, back pain, peripheral vascular disease, gastrointestinal problems, thyroid disorders, and cardiovascular disorders. I already have severe food allergies, IBS, back pain, and pain all over, really, including debilitating migraines.
When I was little, I had ADHD. That’s why I wasn’t supposed to eat red candies or things with too much sugar, etc. except that they also told me ADHD doesn’t exist and it’s because kids don’t have enough discipline! ADHD is a Neurobiological Developmental Disorder, meaning it’s related to the brain, runs in families, and impacts a child’s development and ability to learn. The main symptoms include impulsivity, hyperactivity, distractability, poor concentration, racing thoughts and emotional reactivity. Interestingly, these symptoms can also be seen in chronic hyper-arousal after trauma. I was being traumatised every day in their “care”.
I assure you that I did all of these as a kid and at any point it could have been the ADHD or the PTSD:
In response to trauma, I was programmed to “look out” for behaviour, activities or events that were perceived as threatening. This is “hyper-vigilance” in trauma, but it was also hyperactivity and distractability associated with ADHD.
What appeared as inattention and “daydreaming” behaviour was nearly always symptoms of dissociation or subconscious avoidance of trauma triggers. As I heal from my abuse, it now becomes part of my ADHD.
Intrusive thoughts, memories or other reminders of trauma made we always feel confused, agitated, and nervous which probably got confused for impulsivity and aggression.
Brain development studies for ADHD and child maltreatment show significant similarities in the areas of the brain that are affected (areas responsible for emotional regulation, decision making, memory, social processing, and concentration). I remember very little of my life until I moved to attend university.
Perfectionism can be understood as a function of shame and having been shamed as a child – my father was an expert at making me feel shame. The development of perfectionism in an ADHD brain is that people growing up with ADHD are statistically more likely to have been shamed for their behaviours, despite the fact that these are brain-driven behaviours originating outside of their immediate control. As a result, ADHD brains as more likely to be ‘on guard’ (involuntarily, and at all times) against any possible sign of not measuring up (and have a nervous system with a similar involuntary counterattack ready to go, at all times). As an adult, I have remained an island unto myself, acting ‘strong’, not wanting to rely on people for fear of feeling the shame and isolation of being ignored again, why I didn’t have a well-developed skill of strong self-advocacy, or the ability to ask very clearly for what I want or need.
So to recover (permanently is my goal) from c-PTSD, I have to make new brain connections so that I stop repeating my survival habits. But to do that, I have to go back to my past and re-experience the bad things because I never emotionally dealt with it and that’s what causes my depression. My anxiety is caused by hypervigilance and my worry about the future. Being stuck in the fear response mode means being flooded with difficult thoughts, images, and feelings that are often pushed to the side or avoided.
Once in a calm state of body and mind, I can begin to face the reality of my trauma. As I examine the impact of my trauma, I have discovered distorted thoughts about myself (such as feelings of shame, beliefs that I should have done something differently to prevent the trauma, and thoughts of helplessness).
With my psychotherapist, I work on challenging these thoughts, with a focus on separating them from the reality of the trauma. Upon challenging these beliefs, the trauma can then be processed for what it is, but it’s a delicate process. Simply re-living one’s trauma can do more harm than good. The processing has to be accompanied by a purposeful examination of one’s thoughts and beliefs related to the trauma.
So that covers the mental health aspect of me… hahahaha here’s the physical.
The vagus nerve is one of the connections between the brain and the gastrointestinal tract as well as closely related to the control of mood, immune response, digestion, and heart rate.
Lynch Syndrome – you know what that is by now, the cancer gene. Essentially, a broken communication system activated this disorder in my body because my immune system has been very much impacted negatively by my entire childhood and so I had a 50/50 chance of being a carrier but never developing cancer. Unfortunately, that’s not what happened for me.
Ehlers Danlos Syndrome – For a lot of people hypermobility isn’t an issue at all. But that’s not applicable to me! I have to laugh, or I swear to god I’ll just cry all day every day.
Dysautonomia refers to problems of or dysfunction of the autonomic nervous system. Since the autonomic nervous system regulates automatic or involuntary bodily functions, such as controlling the activities of organs, glands, smooth muscles, and cardiac muscles, when the autonomic nervous system malfunctions, the organs it regulates malfunction. For this reason, when individuals suffer from dysautonomia, they often exhibit numerous maladies and symptoms.
Postural Orthostatic Tachycardia Syndrome (POTS) is one of the dysautonomia that many times has a ligamentous or instability cause. POTS sufferers often present with numerous musculoskeletal conditions, as POTS is frequently associated with hypermobile conditions such as Ehlers-Danlos Syndrome.
There is a strong connection between Joint Hypermobility Syndrome (JHS) and autonomic nervous system dysfunction. In fact, significant dysautonomia is observed in JHS patients with symptoms such as orthostatic intolerance, palpitations, chest discomfort, fatigue, and heat intolerance. These symptoms are significantly more common among hypermobile patients. Autonomic abnormalities in patients with joint hypermobility are typically manifested as POTS.
Symptoms of dysautonomia include exercise intolerance, due to an inability to alter heart rate and regulate the cardiovascular system. Excessive or insufficient sweating is a problem due to problems regulating temperature (for me I don’t sweat enough, and it makes me break out in painfully itchy rashes). Slow digestion causes nausea, loss of appetite, bloating, diarrhea or constipation, and difficulty swallowing. Problems with vision include blurry vision or the failure of the pupils to react quickly enough to changes in light and also my eyes don’t produce tears and they’re always so dry and that contributes to my blurred vision. And the list goes on…Fatigue, abnormal breathing patterns (I have sleep APNEA), vertigo, gait problems, hypoglycemia, “anxiety,” insomnia/non-restorative sleep.
The sympathetic nervous system helps make adaptations to current situations by adjusting heart rate, blood pressure, and breathing rate to dramatically increase when exercising or during physically demanding tasks. The parasympathetic nervous system is an energy management center. When you are done being in “fight or flight mode,” or are using techniques to end a panic attack or to catch your breath, or calm yourself down, the parasympathetic nervous system helps automatically reduce heart rate and blood pressure.
The sympathetic nervous system and parasympathetic nervous systems main highway of communication is the vagus nerve of which there are two running down each side of the neck. The vagus nerve has a great impact on heart function, as the cardiovascular messages to the brain. The majority of work the vagus nerve does is getting messages back and forth from brain to heart. These messages “in” go through the nodose ganglion (nerve bundle) which sits in front of the atlas (C1 vertebra). If the C1 vertebra is unstable and causes problems of “nerve pinching” this is how upper cervical instability can affect the heart rate variability. Many of the vagus nerve sensory fibers that regulate blood pressure are in the carotid artery and the glossopharyngeal nerve fibers. The nerves are part of a network that carries impulses to the brain that tells the brain what is going on with heart rate and blood pressure moment to moment. I have issues with those vertebrae.
Although joint hypermobility has primarily been thought of as a rheumatological disorder, increasing evidence shows significant associations between EDS and inflammatory disorders. To date, the strongest associations of these two conditions are with anxiety disorders, orthostatic tachycardia, various functional gastrointestinal (GI) disorders, and pelvic and bladder dysfunction.
Mast Cell Activation System (MCAS) is an immune, inflammatory disorder. A suggestion is that something is causing a misfiring of the autoimmune system. Mast Cell Activation Syndrome is primarily found in young hypermobile females, including those with EDS and POTS. Dysautonomia is far more common in EDS, POTS, and allergic-type disorders than in the general population. Mast Cells are in the connective tissues, near blood vessels, where they store and release histamine and other immune-modulating substances in response to antigen and other pathological stimuli associated with tissue injury, inflammation, and autoimmunity. Mast Cells are critical for proper microbial defense, epithelial integrity, immune regulation, and proper neurological activity of organs and tissues.
EDS patients are at risk for Mast Cell Activation Syndrome (I’m pretty sure I have this, but I’ll be tested when I see the specialist at the EDS clinic in 6-8 months) through many mechanisms including loose connective tissue in the GI tract and blood, being on medications that raise histamine levels as well as ligamentous upper cervical instability-induce dysfunction of the vagus nerve.
What is Ehlers-Danlos Syndrome (EDS)? A group of inherited disorders that affect and weaken the connective tissues such as tendons and ligaments. Primary sites of involvement include skin, joints, and blood vessels. Joints are typically hypermobile with excessive joint range of motion as a result of a defect in collagen formation.
Is Ehlers Danlos painful? Yes! Overall, approximately 90% or more EDS patients suffer from chronic pain. Common sources of pain include tissue trauma, myofascial, joint, and nerve-related pain. Hypermobile joints are unstable and susceptible to sprain, dislocation, subluxation, and hyperextension which can cause muscle, tendon, ligament, and joint injury and pain.
Does hypermobility affect the spine? Yes, and this is why my son needs to go to Sick Kids’ EDS clinic to be evaluated for his scoliosis. The lumbar spine is comprised of 5 intervertebral bodies and discs. The lumbar spine is stabilized by supporting muscles, tendons, and ligaments. The supra, interspinous ligaments, and thoracolumbar fascia in the low back are critical stabilizers and can be affected in patients with EDS. Laxity of the supporting ligaments and fascia can result in injury to the disc, facets, and lumbar nerves.
The sacroiliac joint can also be a source of low back pain, which is my major issue. In real life, all these things are manageable… it’s my body slowly falling apart or turning to absolute rust that I’m having a really hard time with. For me, it means chronic pain whether I’m asleep or awake. the feeling of being tenderized with a mallet all over my body. Not enough to break bones, but hard enough to leave bruises.
My joints are lax, and messages get mixed up between the brain and where they’re going meaning that doing the most routine of things (like standing up) requires my muscles to work extra hard. It makes me tired. Things like going from standing to sitting and then up again can be exhausting. It explains how I can sleep like fifteen hours straight and wake up exhausted still. My body must work twice as hard as normal people. My joints can move and bend a lot more than what most people experience. My body makes all kinds of noises sounding like I’m full of pop rocks. Was that a gunshot? A firecracker? Nope, it was my foot hahahahaha.
For me a flare-up begins with a low fever, next comes the pain. Every day is painful with EDS. It brings pain and an increase in symptoms to my entire body; pain, GI distress, MCAS reactions, dislocations, subluxations, dysautonomia symptoms, insomnia, fatigue, brain fog, a sense of being “wiggly” or dangerously clumsy.
At least I feel like I actually am getting to know ME better.
Read from the beginning:
Prologue : FamilyChapter 1: The Early Years
Chapter 2: Protector: 1979-1981
Chapter 3: Pre-Teen Years 1981-1987
Chapter 4: Teen Years: 1987-1993
Reality Bites - The Truth Reveals Itself
Chapter 5: University: 1993-1998
Chapter 6: Young Adulthood
Healing
Chapter 7: Parenthood: 2007 - now
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