Last weekend, I was at my parent’s house not watching the super bowl, and my mom brought out a pile of pictures she was going through. She handed me a picture that gave me a punch in the gut. This is a picture from when my parents took my husband, my sister, and I to Hawai’i a few years ago:
What It Is:
This is the present. I was diagnosed with dysautonomia and POTS (Postural Orthostatic Tachycardia Syndrome) in May 2012 when I did my first Tilt Table Test. Dysautonomia and POTS are very rare conditions and are very rarely diagnosed. It’s estimated that 500,000 people are diagnosed with POTS. There is no pamphlet or brochure for this condition and most of the doctors and specialists out there have never heard of it. There are no specific medications for dysautonomia. Many with the condition will hear from doctors that your symptoms are "all in your head." It's an almost universal experience. This is why it took me over a year to get diagnosed. It’s been almost 3 years and I’m still trying to get a more complete diagnosis. Once you get a diagnosis, a cardiologist and a neurologist are the first lines of defense in the battle.
I am no medical professional (though I would argue I may deserve an honorary medical degree at some point), but as far as I know a Tilt Table Test (TTT) is the only way to get a definitive diagnosis for POTS. The test sounds simple: you are strapped to a table while lying horizontally. Your blood pressure and heart rate are monitored continually and they lift you slowly up to vertical while still strapped to the table. My heart rate immediately increased almost 80 beats. 72 at horizontal to 145 at vertical. It was unpleasant. If your heart rate increases by 30 beats, you have a definitive diagnosis of POTS. I was earning extra credit with the 80 beats. POTS is subset of dysautonomia, which means a dysfunction of the Autonomic Nervous System. Not everyone with dysautonomia has POTS. There are a variety of subsets. Dysautonomia is is referred to as an "umbrella term." It is important to find out which subset you have to get more focused treatment.
The ANS controls all of the functions your body preforms automatically: breathing, heart rate, blood pressure, digestion, body temperature, sweating, etc. "Autonomic Dysfunction" means the body is no longer able to self-regulate these functions. Normally, when you stand your body is able to adapt to gravity and maintain blood flow to your essential organs. The words “postural orthostatic” and “tachycardia” mean that upon standing the blood pools in the legs, your blood pressure drops, and your body goes into overdrive to maintain blood flow to your brain. This is why fainting (syncope) is often associated with dysautonomia and POTS. This condition can be result of nerve damage so the nerves (your direct line of communication in the body) are no longer working as the connection between the brain and the body. It’s like the body just suddenly forgot how to be a body (you had ONE job!). I explain to people that it’s like my “wi fi” was turned off and I swear I paid my internet bill.
Symptoms typically related to dysautonomia include dizzinesss, excessive fatigue, GI problems (including gastroparesis and dumping syndrome), blood pooling, syncope, brain fog, difficulty sweating and maintaining body temperature regulation, tachycardia, bladder problems, hypovolemia, etc. Symptoms manifest uniquely for each individual, which makes diagnosis that much more challenging.
Dysautonomia is not a disease; it is a symptom and a condition. The real struggle is not getting the diagnosis. It’s finding the cause. The Elusive Cause is more difficult to track down than Sasquatch and for most people The Cause is never confirmed. My doctor at Stanford believes The Cause for me is likely a conglomeration of genetic predisposition, multiple neck injuries (in gymnastics and a car accident), and other factors. The Cause is still elusive for me because my doctors couldn’t tell me why I had sudden onset of the condition. Most of the time people acquire dysautonomia after a major illness, often a viral illness. Recent research shows that dysautonomia also has an autoimmune component. It seems most dysautomoniacs (if not all) have a variety of other illnesses and conditions. As one of my doctors said to me with much appreciated empathy “Some people are just lucky.” Dysautonomia is incredibly unique for each individual and presents differently. It can be severely disabling to the point that some are unable to work. I was unable to work the first year and I work now but with varying levels of success.
There are very few physicians who have heard about this condition and only a handful in the world who are experts on the subject. If you get a diagnosis, I recommend seeking one of these individuals out at a specialty, research hospital. That was the best thing I ever did. I am now treated by an expert at Stanford University. There is autonomic testing which can help narrow a diagnosis but only a few places in the US that I am aware of have the facilities to perform these tests. Many of these tests were created at the Mayo Clinic. I’ve heard that’s one of the best places to go for autonomic dysfunction.
There are no replacement surgeries for the nervous system. It can’t be grown on a rat and transplanted into your body. You’re stuck with that lemon. And here’s the kicker: there is no cure either. The only option at this point for dysautonomiacs is treatment of symptoms. But there is hope. Sometimes the condition improves on its own and sometimes it doesn’t. There is medication used off-label to treat dysautonomia/POTS and there are non-pharmaceutical options (my favorite kind) to manage the symptoms as well. Treatment for dysautonomia often involves medication that raises blood pressure such as Midodrine or Florinef, an increase in salt intake, exercise to build strength and avoid deconditioning, and other medications to manage the wide range of symptoms patients have related to the condition. I take a calcium channel blocker (Verapamil) to lower my heart rate, Florinef to help my body hold on to salt and raise my blood pressure, and salt pills. It seems that more people and medical professionals are becoming aware of this condition.
There are a few great websites that explain POTS and dysautonomia that are indispensable to understanding the condition and finding treatment:
The most important thing to remember is that there is hope and dysautonomia may be part your life but it cannot take away your humanity, your values, and your spirit. There are resources to manage the condition so that you can live the best life possible.
Arming yourself with information is essential in the battle because you will often have to be the expert when talking to doctors, and taking ownership of your health is imperative. I stepped through the looking glass, but I came out the other side a warrior.