dysautonomia awareness month 2019…

As you may know, October is Dysautonomia Awareness month. I’m a procrastinator, so I like to wait until the end of the month to suggest that you spend the entire month raising awareness about dysautonomia. There’s an event next weekend here in southern California if you are local and interested in attending.

I don’t post as much about dysautonomia lately, mostly because my POTS is better controlled than my small fiber neuropathy at the moment. Most of my medical research and discussions as of late center around nerve pain, rather than the symptoms of autonomic dysfunction. However, in honor of Dysautonomia Awareness month I thought I would share a little about POTS.

POTS

POTS is a form of dysautonomia, meaning a dysfunction of the autonomic nervous system, or ANS. Your ANS controls all of those automatic body processes you don’t think about, like blood pressure, heart rate, temperature, breathing, sweating, pupil dilation, and digestion. In people with dysautonomia, those processes may not function normally.

The “tachycardia” in the name postural orthostatic tachycardia syndrome suggests that it’s a heart condition, but it’s not. It’s true that my heart doesn’t function like it should, however, my entire ANS doesn’t function like it should. The orthostatic tachycardia is just the easiest quantifiable measure of that dysfunction.

POTS is typically diagnosed by a tilt table test, although a QSART or holter monitor may also be ordered.

Definition of POTS

POTS is defined as an increase in heart rate of at least 30 bpm, or an HR of at least 120 bpm, within ten minutes of standing. When the average person stands up, gravity pulls blood towards the feet. The heart works a little harder to keep blood circulating back up where it is needed most – the heart and brain. The heart rate of a typical person may slightly increase upon standing to counteract gravity, but quickly returns to normal as the blood vessels constrict and the heart pumps harder to promote circulation. In those of us with POTS, those mechanisms don’t work as well and blood pools in our legs. Our heart rate continues to increase, trying to pump blood back up. However, we often cannot return the amount of blood needed back up to the brain, resulting in lightheadedness and presyncope or syncope (fainting).

POTS is not rare

POTS is often mistaken as a rare condition, probably because it’s not well known. But it’s not rare. It is estimated that approximately 1-3 million Americans have POTS. In fact, it’s more common than multiple sclerosis, Parkinson’s disease, and Amyotrophic Lateral Sclerosis‎ (ALS), yet most people are more familiar with those illnesses.

Symptoms

Because dysautonomia affects so many different bodily functions, POTS causes an array of symptoms, including lightheadedness, dizziness, headaches, brain fog, nausea, motility issues, abdominal pain, blood pooling, tremors, presyncope/syncope, anxiety, chest pain, fatigue, shortness of breath, inability to regulate temperature, excessive sweating or lack of sweating, exercise intolerance, and difficulty sleeping/insomnia. Every POTS patience experiences symptoms differently.

Quality of Life

Because the frequency and severity of symptoms varies greatly from person to person, so does the quality of life. POTS specialists have claimed that the functional impairment of POTS is similar to that with congestive heart failure or chronic obstructive pulmonary disease (COPD). I have POTS friends that can work, run a 10k, and participate in most standard daily activities without much thought. I also have POTS friends that are disabled and wheelchair bound, unable to leave the house often. I probably fall somewhere in the middle. I own a walker but rarely use it because I don’t go places where I would have to stand for long periods of time. I have a job, but don’t work a full 40 hours per week. I can exercise and do so regularly, but still get a little dizzy walking my dog everyday.

I am fortunate that tachycardia isn’t a huge issue for me anymore. My heart rate used to easily jump to 140+ when I stood up. However, with the increase in exercise over the past year (I exercise 5-6 times per week), my heart has become a lot stronger and my resting heart rate is lower. My heart rate still jumps when I stand, usually from about 55 to 105 instead of 70 to 140 like it did previously. However, I still get symptoms of autonomic dysfunction, because as I mentioned above, the increase in heart rate upon standing is just a visible measure of the problems with my autonomic nervous system. A lower heart rate doesn’t mean that my heart is “fixed”, since there was never anything wrong with it in the first place.

Treatment

Unfortunately, there is still no cure for POTS. A lot of research is being conducted into the cause of POTS, and more and more studies seem to suggest it is an autoimmune condition where the body attacks the blood vessels. Given the functionality of POTS, there’s some logic to the autoimmune theory.

In addition to the lack of a cure, there is also a lack of medications to treat POTS. There’s no medication that treats your entire autonomic nervous system. All medications prescribed for POTS are prescribed off-label to treat the individual symptoms. Commonly prescribed medications are beta blockers and ivabradine for tachycardia, midodrine for blood vessel constriction, and fludrocortisone (Florinef) for sodium retention. Lifestyle modifications can also help, such as using a mobility aid, heating pads, cooling vests, exercise, drinking lots of fluids and consuming sodium to help retain fluids (which then raise blood volume), and dietary changes.

Things to keep in mind

No one wants to have POTS. No one wants to get tired walking the 15 feet to the bathroom, or repeatedly call out sick and try to explain why, or worry about what strangers will do to your unconscious body if you faint in public. Like most chronic illnesses, POTS is life-altering. Accusations of laziness or attention-seeking aren’t helpful, and frankly just display ignorance. Most of us just want our old life back. So please be patient with us.

Happy Dysautonomia Awareness Month. Go celebrate.

“Your problem is how you are going to spend this one and precious life you have been issued. Whether you’re going to spend it trying to look good and creating the illusion that you have power over circumstances, or whether you are going to taste it, enjoy it and find out the truth about who you are.” ― Anne Lamott

Smell ya later.
– Linds