Dysautonomia. A long, complicated-sounding word and even more complicated medical diagnosis. But what is it, exactly? October is Dysautonomia Awareness Month, so let’s delve a little deeper into this little known, yet extremely common health condition.
As defined by Dysautonomia International, dysautonomia is “an umbrella term used to describe several different medical conditions that cause a malfunction of the Autonomic Nervous System. The Autonomic Nervous System controls the “automatic” functions of the body that we do not consciously think about, such as heart rate, blood pressure, digestion, dilation and constriction of the pupils of the eye, kidney function, and temperature control. People living with various forms of dysautonomia have trouble regulating these systems, which can result in lightheadedness, fainting, unstable blood pressure, abnormal heart rates, malnutrition, and in severe cases, death.”
Sounds daunting, right? You’re probably thinking, oh, that’s one of those conditions that I’ll likely never be faced with because it’s totally rare and I’m completely healthy.
The thing is, dysautonomia is not rare, it’s just rarely diagnosed.
Many people living with dysautonomia don’t even know they have it because they are relatively asymptomatic. Sometimes it takes a triggering event to spark the chain reaction of symptoms. And other times, patients exhibit life-altering symptoms every day for their entire lives.
Explaining the “Umbrella” of Dysautonomia
Dysautonomia is very frequent in migraine patients and vice versa, as it is considered a comorbid condition. Common symptoms that patients with both health issues experience in combination include hypotension (low blood pressure), syncope (fainting), vertigo or dizziness, photo- and phonophobia (sensitivity to sound and light), and aphasia (trouble speaking).
Two of us here at The Migraine Mantras live with multiple forms of dysautonomia. We’ll touch on our experiences below and how they affect our migraines, but first we’ll explain the gist of each condition we live with specifically.
POTS: Postural Orthostatic Tachycardia Syndrome
Both Kirstie and Jorie live with Postural Orthostatic Tachycardia Syndrome (abbreviated as POTS), a form of dysautonomia that affects heart rate upon sitting or standing, and also tends to result in tachycardia even during resting periods.
Dysautonomia International estimates that this condition impacts 1 out of 100 teenagers and a total of 1,000,000 to 3,000,000 Americans. That’s a lot of POTS clashing around. Symptoms of the disorder include, of course, tachycardia, as well as lightheadedness and dizziness, syncope (fainting), headaches, fatigue, shortness of breath, shaking or tremors, and more.
The impact of POTS on patients widely ranges from minor to severe and presents differently for everyone. Some people are able to lead a fully functioning life with very few symptoms or episodes, while others are confined to disability, experiencing the effects of POTS 24/7.
The symptoms of POTS combined can leave us at a higher risk of triggering a migraine, especially because of the way our bodies respond to certain stimuli. Our vascular systems differ from a “normal” one, and this can greatly affect the dynamic of living with and triggering migraines.
NCS: Neurocardiogenic Syncope
Jorie also has Neurocardiogenic Syncope (abbreviated as NCS), a disorder of the autonomic nervous system that is caused by a drop in blood pressure, quickly followed by faster, then slower heart rate which results in poor blood and oxygen flow to the brain. This causes temporary loss of consciousness.
NCS is considered a flight or fight response and prior to syncope, typically causes lightheadedness and dizziness, vertigo, nausea, paleness and clamminess, blurred vision, and even seizure-like movements. A specific trigger is often the culprit for patients living with NCS, causing their autonomic reflexes to kick into gear, mistakenly thinking their body is in danger. Triggers can include fears, heat exposure, standing for too long, straining, and more.
As the most common form of dysautonomia out of all the types, NCS is believed to affect tens of millions of people globally according to Dysautonomia International. Some people go their whole lives undiagnosed, some only experience a few episodes of NCS, and others battle it 24/7.
IST: Inappropriate Sinus Tachycardia
Kirstie battles the side kick to POTS as well: Inappropriate Sinus Tachycardia. Inappropriate sinus tachycardia (IST), a form of dysautonomia that impacts around 1.2% of the population. IST is characterized by unexpectedly fast heart rates at rest, with minimal physical activity. The syndrome of IST is defined as a sinus heart rate over 100 beats per minute at rest.
Patients with IST range in no symptoms, to extremely debilitating symptoms such as palpitations, weakness, chest pain, shortness of breath, fatigue, dizziness, or near syncope. If IST is suspected, a medical review and physical exam should be performed in order to rule out secondary causes for the tachycardia such as: infections, myocardial infarction, heart failure, pulmonary issues, medications, structural heart disease or thyroid disease. Some individuals who have(POTS) have overlapping IST.
IST often results in a diminished quality of life. Currently there are no long-term, prospective, clinical trials that have demonstrated a substantial improvement in outcomes. Symptoms can even continue in some patients despite heart rate control, according to Dysautonomia International.
Living with Dysautonomia and Migraines: Our Experiences
My first episode and doctor visit with my journey to being diagnosed with POTS (postural orthostatic tachycardia syndrome) wasn’t easy. I was always in a cold sweat and had shortness of breath, even when doing simple things like climbing steps. I also began to have tremors when my heart rate reached a certain threshold, in turn causing a need for more testing.
On this journey to being accurately diagnosed, I completed what seemed like hundreds of tests – including event monitors, Holter monitors, echocardiograms, blood draws, EKG’s, 24 hour urine collections, tilt-table testing, pulmonary function test, even a psychiatrist. I visited with three cardiologists, one electrophysiologist, two primary physicians, two neurologists, and many emergency physicians.
Throughout testing, I was given diagnoses ranging from heart blocks, to anxiety, asthma, and others. I was given prescriptions for more drugs than I can count, and offered interventions such as surgery, consumption of two gallons of water per day, de-stressing, and more.
During this ordeal, I became categorized as a “hypochondriac” because I denied their medical advice with the belief that I was being misdiagnosed with all of these extra things.
I knew what was happening, I just knew it was my heart… and I was right.
The third and final cardiologist got to the bottom of my conditions, even calling me a “medical mystery” that he was willing to solve. I now have the official double diagnoses of POTS and IST (inappropriate sinus tachycardia).
Learning to live with POTS and IST isn’t an easy task. Things you take for granted in your daily life change drastically, from getting out of bed, to showering, and even going to the grocery store. You have to learn to take everything one step at a time, literally.
Making life easier for yourself can be a lifesaver. Slowly rising from bed or being seated for a lengthy time, (POTS patients can pass out suddenly from changes in blood pressure or heart rate), sitting down when you need to while brushing your teeth, or showering with a chair. It’s essential to make sure you take your daily medications at the same time, each day.
As a POTsie you may feel bad for having to stop and rest when out with friends, or family…but don’t. Take the extra needed time, your body will thank you.
My diagnosis of NCS came far before my diagnosis of POTS, but the two do go hand in hand nowadays and both have an impact on my life with migraines.
Remember what we said above about NCS often involving a triggering moment that causes symptoms to unfold? Well, that’s exactly what happened to me.
And my trigger? Needles. Cue the eye rolls.
As you can imagine, having needles as a trigger for an NCS episode isn’t exactly convenient as someone with multiple health conditions.
The day it all happened, I was visiting my family doctor getting several shots to prepare for my freshman year of college. If I remember correctly, it was the Tetanus vaccine that set me off. It was probably the 4th or 5th round of vaccinations that day and as the nurse and my doctor left the room, I suddenly felt extremely woozy. The room was spinning and my body broke out in a cold sweat.
Then… my world went black.
The rest of the story came from Mom, as she typically comes to appointments with me to make sure we cover all bases. I fell back onto the examining table and started having a seizure — tensing up, eyes rolled to the back of my head, skin white as a sheet. Mom screamed for anyone at all to come help.
I woke up, sobbing and anxious, as a nurse was attempting to comfort Mom and me. She handed me a cup of water and I shakily sat up, gulping it down, wondering what on earth had just happened.
Then, my doctor came strolling back into the room nonchalantly after hearing the story. “No big deal,” he said. “You just had a vasovagal reaction. At least now we know!” (Note: A vasovagal reaction is medically called NCS).
I wasn’t feeling so light-hearted about the incident as he continued to explain it to Mom and me, but I’ve now become accustomed to realizing when I will be triggered and how to properly deal with it.
Fainting and seizures aren’t as much of a problem anymore, with my NCS or with POTS. Specifically for NCS, I know that I have to lie down if I’m going to be dealing with needles coming anywhere near my body these days, and I know that I’ll need to have my blood pressure and heart rate monitored closely for any adverse effects.
My POTS diagnosis was slightly more difficult to achieve, but not as long-winded and complicated as Kirstie’s story. It was a gradual puzzle game over time that my doctor finally pieced together.
Each doctor’s visit I went to, my vitals would be all over the place, all the time. My heart rate would be off the charts — as if I had just finished running a marathon — but my blood pressure would fall extremely low. Yet my body was always at rest during these measurements. Luckily, my doctor was well-versed in POTS and after a few simple tests and evaluations, he made the conclusion.
We found specifically that my heart rate jumped upon sitting or standing, a hallmark symptom of POTS. I also noticed that this was a major reason why I couldn’t handle strenuous exercise or intense cardio — hard work out sessions would send me into migraine-mode in the snap of a finger and make me feel faint, nauseated, and weak.
Though I typically only have flares and don’t live with the symptoms 24/7, it can still be despairing. POTS literally feels like your heart is going to break out of your ribcage just by sitting or standing, so it’s become second-nature for me to do these things slowly. It feels like the kind of gasping for breath you experience with running up a flight of stairs. It’s a throbbing head, the psychedelia of vertigo, clammy hands, and wobbly legs. It even feels like the crushing anxiety of a panic attack at times.
Because of the combination of POTS along with NCS, my blood pressure often drops to a dangerous level, while my heart rate rapidly increases, as I mentioned above. This in itself has a significant impact on my migraines due to the vascular nature of migraines. My migraines can feel more intense with movement because it causes my vitals to go haywire.
Just sitting up too quickly can cause my head to pound immediately. Overexertion or getting overheated triggers an instant migraine. The symptoms tend to crossover, and frequently I can’t distinguish between the two because they so often happen simultaneously. While it can be complicated, I’ve learned to adapt.
It’s just part of the game of chronic illness.