Dis oughta know me, uhhh?!?

Dysautonomia, pronounced dis’-oughta-know’-me-uh, means dysfunction of the autonomic nervous system.  Your autonomic nervous system controls everything you don’t have to think about: your heart rate, blood pressure, breathing, digestion, body temperature, sleep cycles, sweating, and more.  Living with dysautonomia is like trying to drive a car to a destination, but not having any control over gear changes, and not knowing when the car will shift itself into a different gear, including Park, Neutral, and Reverse.  

Dis oughta know me…uhhh, but it don’t.

Dysautonomia can cause lightheadedness, dizziness, fainting, headaches, cognitive impairment (brain fog), insomnia, nausea, chest pains, blood pooling in the extremities (blue feet), trembling and shaking, too fast or too slow heart rate, too fast or too slow-moving gastrointestinal tract, too much or too little sweating, and poor blood flow to the heart, brain and other organs.  There are many types of dysautonomia including postural orthostatic tachycardia syndrome (POTS), neurocardiogenic syncope, and orthostatic hypotension (OH).

Dysautonomia is an invisible, dynamic disability.  At any given moment, bodily processes that most take for granted go awry, rendering you nauseated, running for the bathroom before you poop your pants, shivering cold, unbearably hot, dizzy, lightheaded, and/or passed out.  Some, but not all, dysautonomia symptoms can be minimized by lying down.  This helps improve blood flow to the brain and heart. 

Because of my OH, I can’t be upright and/or in the heat for too long before I experience intense pain in my neck and shoulders (coat hanger pain), nervous agitation, jumpiness, clumsiness, and an inability to recall the names of everyday objects, process information, and think and speak coherently and clearly.  The cumulative effect of being upright and/or exposed to heat beyond my threshold of tolerance is that I would feel really depressed, even suicidal.  That’s scary at any age, but particularly when you’re young and don’t know what’s causing it. 

Every doctor I saw misattributed my symptoms to stress, hormones, or, a normal part of aging (I was in my 30s).  So, I addressed my stress and hormones, which did nothing to attenuate my symptoms.  So, I flogged myself harder, thinking I had some serious psychological and personality defects, when, in reality, I had a serious medical problem.  “Weak", “lazy”, “stupid", echoed in my head every moment of every day.

Even after I was diagnosed with Sjogren’s, a serious autoimmune disease that can damage autonomic nerves, and was referred to three different neurologists, my symptoms weren’t taken seriously, because neurologists rarely and barely recognize dysautonomia.  I waited 6 months to see a neurologist.  He refused to examine me because I hadn’t experienced any symptoms for 2 weeks.  The next told me it was all in my head.  The third one admonished me for my self-observations and doing my own research and altered how the tests were done, so that the results appeared normal, when they weren’t.  

Disgusted and despairing, I gave up on neurologists and figured it out with the help of other Sjogren’s patients, Sjogren’s Advocate, The Dysautonomia Project book, and Dysautonomia International, the leading non-profit that advocates for individuals living with dysautonomia.  I measured my orthostatic vitals at home, then shared my data and conclusion that I most likely had OH with my doctors.  They didn’t take me seriously.  After a year of managing my OH with salts and homemade electrolyte mixes, and spending most of the summer on the floor with my feet in the air every chance I got (a crippling way to live), my naturopath suggested I bag all the salts I was ingesting daily to keep my blood pressure up and then show it to my doctors.  That got their attention.  I was immediately referred to a cardiologist, who took one look at my data and bag of salts and told me I had OH, I was managing it well, and there was no need to do formal testing.  At this point in my arduous ordeal, I insisted on getting formal tests to prove to myself that I wasn’t insane.  

So, I did the tilt-table test, which confirmed that I had OH.  The relief, self-validation, and confidence that test gave me was priceless.  What my body was telling me, however confusing, inconsistent, scary, and downright weird, was real, despite what everyone else told me.  The depression and suicidal feelings I had while living with unmanaged OH were my body’s way of letting me know that I didn’t have enough blood going to my brain and heart.  

Just like me, many people with dysautonomia take years to get diagnosed and treated once they’re diagnosed, because most clinicians haven’t received training on how to recognize, diagnose, and treat autonomic nervous system disorders.  Medicine has blind spots and, appallingly, neurologists are frequently unfamiliar with autonomic nervous system disorders, despite the fact that they impact many millions of Americans.

The invisibility of dysautonomia makes it difficult to have anything like a life. It’s mentally, emotionally, and physically draining to continually have to adapt to a malfunctioning autonomic nervous system, especially if the functionality waxes and wanes, allowing you to do certain tasks on some days and not others.  Moreover, people can’t see and accommodate dysautonomia the same way they see and accommodate a person on crutches.  All they see is that you were able to do an activity one day and not the next.  You’re controlling if you try to accommodate your invisible symptoms.  Or, if you show up late or cancel at the last minute because a symptom flared unexpectedly, you’re a flake.  Although you look well, you’re not and you simply have to live differently.

The cumulative impact of being upright through the day is like using a credit card that’s close to its limit.  I have to carefully budget my daily tasks to avoid exceeding the limit, which varies and is unpredictable.  The cost of going over my limit isn't momentary and can’t be easily repaid by a short rest.  The cost of overextending may be total or partial loss of functionality for the day, or a lengthy, laborious series of steps to recover from simple tasks that most take for granted, things like shopping, cooking, vacuuming, or driving.  

Dysautonomia affects over 70 million people.  Many cases are triggered by infections; dysautonomia is seen in about 70% of people with long Covid.  Other common causes of dysautonomia include diabetes, Sjogren’s, MCAS, ME/CFS, celiac disease, multiple sclerosis, and Parkinson’s.

October is Dysautonomia Awareness Month.  You can find resources here.

 A version of this blog post is published in my local newspaper, the Davis Enterprise.  You may have to create a free account to read my article 

1 comment

  • Please include PBC as one of the other autoimmune diseases that cause dysautonomia. Also Sjogren’s frequently overlaps with those of us with PBC. In fact, one doctor told me Sjogren’s is PBC’s best friend. I remain disappointed this isn’t highlighted more within the Sjogren’s community. Thank you.


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