A personal note to share with you, and a rather long blog post.
"It's a mystery"
I have been working with doctors since last January to get to the bottom of what has been causing a long flare up of chronic pain accompanied by lightheadedness, nausea, "brain fog," and fatigue in one of my kids.
After five doctors, many appointments, multiple medical tests and one biopsy, a few rabbit trails, and a lot of intense internet research (glued to the computer for months), a few weeks ago we received a diagnosis: a disorder called Postural Orthostatic Tachycardia Syndrome (POTS, for short) with Orthostatic Intolerance.
POTS is not a well known disorder, and for many who have POTS, diagnosis can be elusive -- hence this post, our story, and the information below.
This experience has given me a heightened compassion for people who face the unknown with medical issues. It also has burdened me with an obligation to share what we have learned, in case it may help someone.
The Central Nervous System (CNS) and POTS
You might remember some aspects of the central nervous system
from high school biology. Or, if you are a Gen Xer, like me, think back to Schoolhouse Rock
on Saturday morning cartoons. "It's a telegraph line, you've got yours, and I've got mine!"
The autonomic function of the central nervous system manages things your body does automatically: regulate heart rate, digest food, etc.
POTS is a condition where the autonomic system is not working properly. It falls under a group of disorders labeled "Dysautonomia." A dysfunctional autonomic system.
When one part of the central nervous system is not working well, things happen. The heart races and slows, blood pressure isn't well-regulated, digestion doesn't work well and can be painful. Hence, nausea is common, fainting or lightheadedness is common, "brain fog" and trouble "finding the words" for things, chronic pain and fatigue, and more.
Some patients struggle with anxiety. (I am not sure if this is because of the brain's key role in the CNS, or because POTS people may be worried about "brain fog" and losing words, falling down or becoming weak and sick, or not making it through a day with out a crash. This kind of thing on any level can be stressful over time.)
Some of these issues can be almost constant, and some may flare up when you least expect it.
POTS is a disorder that is frequently misdiagnosed, and some doctors have not heard of it or just do not know much about it. In our case, for a while I was exclusively focused on one particularly bad symptom -- completely missing the other symptoms and clues which seemed unrelated to the problem.
I now realize we have been dealing with this condition longer than we thought, though the January flare up was the catalyst for us to become focused on seeking new help. Lots of pieces of the puzzle are coming together. Pain was the overriding symptom determining my focus. Even good doctors who know about POTS can only use what they know from patient reporting and tests.
Mayo Clinics around the country are specialists on this syndrome, but there are other specialists who can diagnose and treat POTS. A cardiologist at our local children's hospital was able to diagnose it for us immediately with a heart test, once we knew which direction to look. (See link for list of docs.)
Official diagnosis occurs by tests measuring heart rate and blood pressure in various positions and with various postural changes. Because of this particular way of diagnosing it, cardiologists are as informed on the matter as neurologists. Some GP's will have heard about it as well.
What does POTS feel like?
My child does not have a severe version of POTS. That means my kid looks like a completely healthy person on the outside when you see her, and if she is careful, she can participate in most regular activities.
And we are thankful for this lack of severity -- some patients need a wheelchair/walker, regular IV treatments, and must be tutored or homeschooled.
POTS people can face different symptoms, all with differing levels of severity, and many have one or two symptoms that for them causes the most distress.
But in general, as I have indicated before, POTS folks tire much more easily than you and me (body working overhard just to stand), are prone to onset of lightheadedness and fainting, have nausea, experience "brain fog" or loss of words, and some have abdominal pain or other pain. (In our case, this is the most severe symptom. And this is not an exhaustive list.)
Treatment will vary. It will probably involve Rx meds, and, for sure, heavy fluid intake (for us at least 96 ounces of fluid a day), along with dramatically increasing salt intake (weird, I know) and electrolyte intake.
It can be hard to get enough salt and electrolytes. We have salt tablets and currently use a product you can buy called Banana Bag
-- a great supplement for athletes, btw, but mix it with juice, not water. There are many electrolyte solutions out there and POTS patients have their favorites -- and strong opinions about them.
Doctors also have people increase sleep time to amounts more than what is usually recommended for a patient's age, wear compression socks or hose, and start -- or continue, in our active kid's case -- moderate exercise. My kid is determined to stay active and play sports.
But for those with severe cases (people who can barely walk at times) exercising at all is a huge challenge. Other people with severe symptoms can have trouble drinking and eating. So the treatment that will help can itself be hard to implement.
For a measure: doctors say POTS patients use 3 times more energy just standing upright than others. You might be having a great day physically (good days and bad), but moving up and down can undo you. A very minor illustration: my athlete cannot do so-called "suicides" (drills) due to going down and touching ground then coming up constantly -- will become faint. Standing up from bed or a desk, leaning over to pick up a pencil, etc, can make you pass out. There even seems to be anecdotal evidence that barometric pressure may have an effect on people.
That said, exercise is encouraged and helps keep you strong and your blood circulating. But even for a moderate or mild case, too much exercise or not being able to get enough electrolytes and fluids in your system can cause a "crash/flare up" and bed rest, or a fainting episode (and with that comes concussion risk, etc). The online support groups are full of stories of concussions, broken arms, etc from falls due to fainting. And for some people, weekly or more IV therapy becomes necessary.
Finding an answer
We are thankful for an answer, a mild-moderate case, excellent local doctors, and a course of treatment. And we have encouragement since, for many, this resolves itself eventually in adulthood.
For people I keep reading about with this disorder, it is especially trying for those who wait years for a diagnosis, or who are misdiagnosed and find no relief or help.
Given the frequency of these types of stories, I have felt compelled to write ours and share some information about this disorder on this page, for anyone who may want to explore this.
I've included two links, below, which may be helpful to you.
The best thing you can do if you suspect you have POTS is to reach out to a doctor who is familiar with it -- this would most likely be a cardiologist or cardio-neurologist or any specialist at the website, below -- for a basic test to diagnose. Before you go to a doctor not on this list, make sure their office is familiar with this diagnosis and treatment.
I am thankful we have doctors who are willing to listen and keep searching and trying, thankful for internet access, and thankful for a protocol and medicine to help relieve things. I joke about secretly being a Luddite, but these are times (along with dental appointments!) when I am glad to live in the 21st century.
has lost of information and, importantly, links to doctors who may be able to diagnose and treat you if you have these symptoms.
This POTS video
helps broadly explain in layman's terms what is happening in the body due to this disorder.