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

Anatomy of a Dysautonomic Crash

Yesterday I experienced one of my more severe, most dreaded Dysautonomic crashes (also known as crises but I prefer the term crash as it is very much like suddenly slamming into a brick wall doing 60 mph and crumpling to the ground). I had simply gone to the pharmacy to pick up three much needed medications and this act resulted in my body being unable to process the input it was receiving and I went from functioning to slamming into that brick wall in about 10 seconds flat. The typical crash goes like this - my blood pressure peers over the edge, contemplates the alternatives, and then plummets. It is secretively a sadomasichistic entity that loves to torture itself and the body in which it dwells by climbing peaks and throwing itself off of them, never knowing where it will land. I develop a headache that makes my migraines look appealing and that is impervious to pain medicine. Laying absolutely flat - no pillows, no incline at all- in a pitch dark room and not moving a muscle can take a little of the edge off of the headache. I am dizzy and if I try to move into an upright position frequently tap dance very close to passing out. Nausea follows the headache, and last night I ended up vomiting. Impressively, I vomited in the dark into a trash bag lined garbage can and did not miss a drop - nothing on the bed, nothing on me. I am a professional. My heart rate does weird things during these crashes and it frequently alternates between skipping beats and throwing extra ones in for the fun of it. This started at about 4pm yesterday and the fun did not end until sometime around 6am. I finally fell asleep around 3:30am after being able to slip some meds into my stomach and convincing it to keep them down, but at that point I still had the massive headache.
Today I am in the "hangover" phase in which it feels very much like I have done 10 rounds in a boxing ring, then gotten run over by a semi truck as I crawled home. I slept basically all day today as my body tried to reset itself, and I have been having to try to push fluids to make up all the ones I lost out on. If I am going to feel this hungover, I at least want the night of drinking before hand and the embarrassing stories to go along with it. Preferrably with pictures and or video. I have never even been near drunk, but I know what a hangover must feel like, including the little man who pranced in a field of manure and then danced a jig in my mouth while I slept last night. Evil little creature!  The frustrating thing is that, while I can avoid known triggers of these crashes, they still happen out of nowhere and slam me hard and fast and viciously. All that seeking ER treatment would do would establish IV fluids, there is no other treatment plan for these crashes as any medication administered has a risk of triggering another extreme reaction. I do have access to zofran, pain medication, and reglan at home but they only do so much. This is a part of living with Dysautonomia that few people see, that few people understand, and that does not neatly fit on a checklist of daily living skills for assessment.

So sorry Bethany.Really horrible and I know it isn't nearly a comparison to what you live with every day or during these episodes but I have this lovely disorder called Meniere's and what you described is eerily similar to what I go through when one hits me out of no where.Not fun.

Hoping tomorrow is a better day.Praying for it.

I can't help but wonder how you got home from the pharmacy? I don't suppose the IV fluids would be worth the trip? I mean, dehydration causes nausea - > vomiting?

No matter what I ask, know that you are in my prayers. Barbara

And you still have to explain to someone why you can't work? Imagine that hitting you in the middle of a school day. I hope that these don't come too frequently. I would offer to send Audrey over with a cupcake, but sugar and chocolate are probably awful triggers. (((hugs)))

Hey Bethany,
Sorry to hear that you have to go through that...sounds miserable. I know you don't think the ER can do anything but push IV fluids and try to control the pain with meds you already have access to at home, but you described plummetting BP and dysrhythmias...two very unstable conditions which could necessitate the use of a crash cart (I'm pretty sure you don't have one of those laying around...LOL). Also, I seem to recall you being scolded by your doctors last time for not taking your butt to the ER when your BP crashes that low. I'm just scared and concerned for you and I'm pretty sure your docs would scold you again if/when they found out about this! I pray for your speedy and always! Love ya!

Job 8:21

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

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Wild Olive

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.