More Symptoms Than Doctors Know What To Do With…
A Theory About Unexplained Symptoms and Mitochondrial Dysfunction
I sent an email to Walter Reed trying to make the case that my UC Davis doctor’s theory of a Mitochondrial and/or Metabolic Disorder was causing all of my symptoms, from my major diagnoses of Postural Orthostatic Tachycardia Syndrome, Chronic Fatigue/Fibromyagia, Impaired Sweat Response, Complex Regional Pain Syndrome and my high urine volume and low Aldosterone… even my sensitivity to light, sounds and smells… all those pesky little symptoms no one seemed to care about.
This intro paragraph is full of analogies. Maybe one day I’ll get it sorted out better, but bear with me; I think you will get the jest. I was originally diagnosed with autonomic dysfunction; then several forms of it, and then some more. I joked I was collecting symptoms and disorders like a kid would collect stamps. From what I was being told, my concept of the Autonomic Nervous System was that of a huge switch board with thousands of little switches; more like fuses that could get tripped. If one switch got flipped “off” then you developed a symptom. But as the body tried to work around that symptom and to mediate the dysfunction, other switches (or systems) would get overloaded, triggering those switches to get flipped too. As a broader view, the whole body acts as a series of connected circuits all interdependent on sufficient energy being pushed down the line. Some short-circuits occur because there simply isn’t enough energy to go as far (or do as much) as needs to be done, so a switch gets flipped (like redirecting train tracks) to avoid less necessary functions so energy can be conserved for more critical functions (sometimes to the point of just trying to stay alive). Less train tracks, less resistance, less energy being sucked up by non-critical functions along the way, more energy to attempt to recuperate. Ultimately, everything happening is the body’s way of trying to reduce load, improve function, heal and return to a neutral point (homeostasis). This email really became my overall theory that after many more years of study, for the most part, I am pretty sure I was right on the money.
Obviously this is a simplistic view of a very complex system (really a complex system of many different complex systems). But I think it can help explain a lot for folks suffering with so many things going wrong all at once or consecutively over time. Once you can recognize the cycle of your disease (knowledge), you can start to see places where you can interrupt the cycle and help your body as it tries to give you the best health that it can offer you. After all, balancing out huge swings that can send you into energy crises is so much easier that trying to recover from the day to day struggles of Mito.
The following is an excerpt from an email I am writing to one of my doctors. I do reference some personal stuff (tests, ect.). But it was this email that led to them finally seeing how all of “MY DOTS” really did fit together under one disease process, verses an otherwise very healthy person suddenly having more diagnoses than any one person could possibly live with… and to see that giving me a prescription for each symptom was ultimately not addressing the underlying issue and was only going to work to make things worse.
So with that being said, here is my theory:
My various conditions have significantly limited definitive testing and most testing I have already undergone has either turned out “normal” or with inconclusive or unexplained results. My high lactic acid, low aldosterone, high urine output and through the roof norepinephrine levels being only some of those. But based on what we do know, I have a theory:
If there were an end-process metabolic dysfunction impairing proper ATP production(either through a lack of oxygenation or, for me, what appears to be lack of ATP production despite proper oxygenation,as suggested by UC Davis Sports Medicine), this could decrease the metabolic acidosis threshold, even with mild activity (as seen on the ABG from the Cardio-Pulmonary Stress Test from February 2011). This could indicate impaired aerobic functioning, causing a quicker-than-normal shift to the anaerobic process which would decrease pH levels as metabolic acidosis persists. The body should respond to mediate the high acid level. Since 75% of acid-base buffering occurs through renal function, this could explain the isolated low Aldosterone, as the body works to flush the excess hydrogen ions through the urine to contribute to increased alkalinity. Since anaerobic functioning is far less efficient, any increased demand on cellular activity could trigger the symptoms associated with extreme exercise intolerance (fatigue, muscle cramps,tremors/multiple muscular shaking, breathlessness/air gasping, brain fog and activity induced syncope), by further reducing appropriate oxygen utilization and taxing an already compromised ATP process.
In this regard, low Aldosterone would be the mechanism of mediation of increased acidity verses a disorder. Unfortunately, along with the hydrogen ions, the body also flushes salts and fluid which can lower blood volume and either cause or exacerbate the presentation of POTS symptoms. Furthermore, water soluble vitamins / minerals / electrolytes are also excreted which can negatively affect multiple body systems dependent on such substances and cause additional impairment of the ATP process through absent or ineffective coenzymes. This would compound the problem of diminished available energy required for proper functioning, including the biggest consumer of energy, the brain; hence, the Autonomic Dysfunctions.
Over time, the effect can appear degenerative as the multiple systems struggle to find work-arounds in an effort to maintain homeostasis. The work-arounds, though fixing an immediate problem, end up, in effect, short circuiting other systems, triggering other symptoms that appear to be completely unrelated and otherwise have no clinical explanation (e.g. tests appear normal so there is no explanation for why that symptom exists).
The natural response of“Fight or Flight” that occurs when the body senses danger can also account for a number of less critical, yet still annoying symptoms that appear to be unrelated. As blood flow and energy are redirected to “essential” body functions, other less critical systems decline in function or can practically shut down. Other systems achieve a heightened state. Absent true “danger” that can be escaped through fight or flight, the person is left with an energy drain from the soaring hormones and the physiologic response to them, decreased function in some body systems (GI, small-task brain function and memory, body temperature control, etc.), while other body systems are in overload (sensitivity to light, sound, smells,etc. – the increased alertness/awareness). These symptoms triggered by fight or flight, absent an emergency that can be cognitively/consciously recognized (you can’t really “tell” what your body knows is wrong), can also appear as anxiety and/or panic attacks.
That ends the excerpt from the email. I am including the following as an overview of fight or flight… because I determined that a lot of my “symptoms” were being triggered due to existing in a near constant state of fight or flight. When the UC Davis doctor explained this to me, it was a very big “AH HA” moment that helped to put me a little more at ease; that is, to know that there really wasn’t that much wrong with me. I was merely experiences several symptoms of fight or flight.
Triggering the sympathetic nervous system causes the sudden flood of epinephrine, norepinephrine and dozens of other hormones that cause changes in the body that include:
- heart rate and blood pressure increase
- pupils dilate to take in as much light as possible (light sensitivity)
- increased sensitivity to sounds and smells (overall increased alertness)
- veins in skin constrict to send more blood to major muscle groups (responsible for the “chill” sometimes associated with fear — less blood in the skin to keep it warm)
- blood-glucose level increases
- muscles tense up, energized by adrenaline and glucose (responsible for goose bumps — when tiny muscles attached to each hair on surface of skin tense up, the hairs are forced upright, pulling skin with them)
- smooth muscle relaxes in order to allow more oxygen into the lungs
- nonessential systems (like digestion and immune system shut down to allow more energy for emergency functions
- trouble focusing on small tasks (brain is directed to focus only on big picture in order to determine where threat is coming from)
All of these physical responses are intended to help you survive a dangerous situation by preparing you to either fight for your life or run for your life (hence the term “fight or flight”).
If you are experience symptoms that could be associated with fight or flight, it is important to evaluate what could potentially be triggering such an effect. For Mito patients, it could be a sign that an energy crisis is near.
CALMING SYMPTOMS ASSOCIATED WITH FIGHT OR FLIGHT
If you are in the midst of an energy crisis, resolving the associated symptoms won’t be quick or easy. However, those symptoms can be perpetuated as you expend more energy stressing over the impact those symptoms are having on your life. One way to help interrupt symptoms associated with fight or flight is to trigger the the parasympathetic nervous system, (the one in control when your sympathetic “fight or flight” nervous system isn’t kicked into overdrive).
Exercise and meditation are excellent ways to reduce stress, but aren’t always readily possible. The technique of slow, focused, deep/relaxing breathing (in through the nose, hold, then out through the mouth in a 4-7-8 ratio) can be done anywhere at anytime and has been shown to calm the sympathetic nervous system. It also works to improve oxygenation of the body and reduce stress. So when symptoms begin to spiral out of control, don’t forget to breath.