And God Laughs
I told God my plans and He laughed. So now I am living, laughing, and loving according to His Plans.

Dysauto-what?


Dysautonomia is a term I utilize frequently on this site but have never, to the extent of my memory, really explained in any depth. There is a brief synopsis on the right hand side under "who's on first" but not a lot of detail. Severe non-familial dysautonomias like I have are considered to be extremely rare and therefore not a lot of research has been undertaken in pursuing their causes or treatments. To begin at the beginning, which is usually a good place to start, the word dysautonomia means a failure or malfunction of the autonomic nervous system. The autonomic nervous system is like the cruise control of your brain - it handles all of the automatic functions that your body must do minute to minute, hour to hour without conscious thought. It is absolutely amazing to consider how much our bodies process and maintain without any conscious input from us. In dysautonomia, this auto pilot or cruise control does not work right and so all of those automatic functions are at risk of being compromised. Symptoms vary from person to person, but I will use my particular presentation to illustrate what life with dysautonima can look like.

Neurological symptoms: Ataxia (difficulty coordinating and maintaining balance in space), Lack of proprioceptive awareness (not being aware of where my body is in space), Severe migraines, Difficulty concentrating, Absent circadian sleep wake cycle, inability to feel thirst or hunger, dizziness and near fainting from low blood pressure or low blood sugar

Respiratory: Severe apnea as an infant, Easy shortness of breath upon exertion

Cardiology- Postural orthostatic tachycardia syndrome, episodes of ventricular tachycardia, extremely low blood pressure, arrhythmias

Dermatology: Inability to produce the natural oils that protect the skin

Endocrinology: Inability to regulate body temperature (get fevers for no reason, or when in a hot environment; also drop below normal body temperature for no reason but especially in a cold environment); high risk of heat stroke, absence of the ability to sweat even when extremely hot, frequent episodes of low blood sugar usually from not eating due to not feeling hunger

Urology: Neurogenic bladder, bladder spasms, frequent infections

Gastrointestinal: poor gastric motility, delayed gastric emptying, IBS like symptoms of alternating extremes, abdominal pain, bloating, frequent severe nausea, dysphagia

Others: Dysautonomic crises or what I call crashes when my BP drops radically, my heart rate and rhythm become unstable, I develop a severe migraine, severe nausea sometimes with vomiting, dizziness, personality changes; severe fatigue

Some of these symptoms overlap with the Mitochondrial Disease, so it is difficult to tease out which are strictly from dysautonomia and which are from Mito. But it does demonstrate that it is a disease that impacts your entire body and your entire life. All because somewhere in my brain the messages get scrambled and discombobulated and can not process correctly.
2 comments:

yup, that's the medical stuff--
But I love the humor, emotion and conviction that one day you will be well and you will be able to be what you wish.
That day is coming and until then I will wait on the Lord, he is with you --cause I asked HIM to be ! :)


My prayers for you are added to Stacey's. He listens.

Barbara


Job 8:21

"He will fill your mouth with laughter and your lips with shouts of joy."



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Wild Olive

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Creative Victory

This is Me

I am a thirty year old enigma who has defied every expectation ever placed upon me and refused every definition created for me. My greatest passion in life is to make a difference in the lives of children with special needs and their families. As a special education teacher I broke all of the unwritten rules to make sure that my kids received the services they needed and had a right to receive. I have never been so proud to be reprimanded before in my life. Now, due to unpredictable twists in life, I am learning first hand what life is like when you rely upon a wheelchair for mobility. I am a medical puzzle with the pieces slowly being identified and put together, and my medical bills alone could fund a small nation. It takes a village to keep me alive. :) However, I am not defined by the genetic misspellings. I am a teacher, a daughter, an aunt, a friend, a dreamer, a reader, an amateur photographer, a writer, an advocate, a star gazer, a world changer. I am stubborn, situationally shy, quick to use humor and wit to make others laugh or cope with a situation, sarcastic, fiercely independent, giving, compassionate (sometimes to a fault), protective of those I love, defiant of arbitrary boundaries, perfectionistic, self conscious, self assured (yes you can be both!), articulate and occasionally dramatic. And that is just what I could fit in two sentences! :)

Who's On First, What's On Second, I Don't Know! (Third Base!!)*

Simple Vocabulary Definitions for those who may not speak fluent medical :)

Undiagnosed Progressive Neurological Disorder- This is the diagnosis that is believed to make everything else fit together. It explains my frequent infections, my muscle weakness and dystonia, my dysautonomia, my cardiac issues, my inability to regulate blood pressure, my dysphagia, my ataxia, my severe fatigue, my extreme nausea, my gastrointestinal dysmotility and IBS like syndrome, my unbelievable migraines, my sensory changes in my arms and legs, my vision issues, my hearing loss (so much for blaming medication), and so much more. Going back to infancy and childhood, this would explain the severe apnea, the significantly delayed motor skills, the reason why I could never keep up with my peers in physical activities, the neurogenic bladder, the malfunctioning thyroid, and my frequent illnesses and vomiting. This is the diagnosis now being used since the DNA testing for Mitochondrial Disease came back odd and I can not afford the expenses of a workup at the Mayo Clinic. We are treating symptomatically.

Pan-Dysautonomia- "Pan" means that it impacts many different systems of my body, "dysautonomia" is a failure of my autonomic nervous system or the part of my brain that does all of the automatic things that do not require conscious thought like telling your heart to beat, regulating your blood pressure, adjusting your body temperature, maintaining balance in space, digesting food, hunger and thirst, etc. It is believed that I have had this from birth based upon my history of symptoms, including severe life threatening apnea as an infant, but the cause remains elusive at this time

Dystonia- abnormal muscle tone and spasticity, including painful spasms, that primarily impacts my feet and lower legs and is now starting to be a problem in my back

Ataxia- difficulty maintaining balance and coordinating/executing movements

Dysphagia- difficulty swallowing due to any number of causes including muscle weakness and poor muscle coordination

Adipsia- the absence of a sense of thirst



Other Medical Issues- Lupus Anticoagulant (autoimmune disease that causes me to tend to form blood clots and has already caused two deep vein blood clots and one mild stroke), Migraines, unknown connective tissue disorder, abnormal gastric motility, allergies, history of v-tach and severe sinus tachycardia, changes to my echocardiagram that include leaking valves and a new murmur, low blood pressure, ataxia, untreated PFO (small hole in my heart that increases the risk of stroke), chronic lymphadema in my left arm, Hashimoto's Thyroiditis, Narcolepsy/Idiopathic CNS Hypersomnolance (believed to be a result of the dysautonomia and my brain's inability to regulate the sleep/wake cycle), mild hearing loss, malformed optic nerves, polycystic ovarian syndrome, pernicious anemia, vitamin deficiencies


* Title comes from an old Abbot and Costello routine that I chose to memorize in 6th grade and absolutely love.
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