October is dysautonomia awareness month! Wait. What is dysautonomia? Is it contagious? Is it made up? Does it have a cure ? Is it terminal? Do I know someone with this thing?
WHOA, SLOW DOWN YA'LL.
Let's break it down.
This big scary term isn't contagious. It is a real thing. ICD-10 code and all. At this time in medical advances there are medications and treatments to tolerate symptoms however there is no cure. Depending on comorbidities ; dysautonomia can be terminal.(Don't worry mine is not.)
Dysautonomia on average takes 4-6 YEARS for a diagnosis.
Dysautonomia is an umbrella term used to describe medical conditions that cause malfunction to the autonomic nervous system. Think heart rate, blood pressure, kidney function, temperature control, breathing, and more.This is known as an invisible illness. Sure I look fine. I may even be able to hide my central lines that give me my medications. But even when I "don't look sick," my symptoms can be debilitating.
Some studies even state that POTS patients have a similar quality of life similar to patients on dialysis .
There is more than one type of dysautonomia, which can also go unspecified. I have the sub-type called POTS. POTS stands for postural orthostatic tachycardia syndrome. This syndrome affects majorly how blood flows through the body. Classical diagnosis is made when your heart rate increases over 30 beats a minute, or over 120 beats a minute, within ten minutes of standing.
Did you know it takes a person with POTS 3X as much energy to stand as if does for a normal person?
You know that feeling of dizziness or wooziness when you stand up too quick? YUP. That's my every day feeling. Plus a plethora of other fun symptoms. My biggest symptoms are fainting (ALOT), high heart rate, constant brain fog, blood pooling, fatigue ( cue the CFS),heat intolerance , nausea, vomiting, shaking, chest pain, and shortness of breath. There are so many symptoms I could write a novel, but I will spare the gory details. So let's talk treatment. First line of defense is an increased water consumption, compression stockings, and SALT! Next step is medication. Currently there are no "POTS specific" drugs FDA approved . So for most it is a beta blocker (heart medication). My POTS is severe, so a beta blocker on it's own didn't control my symptoms enough. My cardiologist added a hyperpolarization-activated cyclic nucleotide-gated channel blocker added. This is fancy talk to a medication used to systematically lower your heart rate. (FUN FACT: This is usually used in heart failure patients.) Another treatment is normal saline infusions.This leads the patient to having some sort of central line, a whole slew of its own problems on its own. My most recent type of central line is a power port. This is a device implanted under the skin that uses a needle to access and use. These normal saline infusions keep me vertical. These keep me safe.
60% of patients are told " it's all in your head." I seriously thought I belonged in the nut hut.
As the month goes on I'll dive into a bit more of dysautonomia and a day in the life. But until then let's light it up teal. I know my porch will be. If you're looking for more information or to hear other stories, look up #wegotdys on social media. Spread awareness. Share this blog. Share the hashtag.
