Once upon a time, on a college campus somewhere in America, a girl walked into the building that held her Calculus class.
Her class was on the 4th floor, which was better than the 2nd floor because it was just high up enough that you wouldn’t get the side eye for taking the elevator.
So of course, she took the elevator every day.
Until one day, when she ran into a boy from her class on the way in the door. Never being one to miss the opportunity of talking to a cute boy, the girl trailed behind as he headed for the steps.
It was only halfway up the first flight of steps that she realized what a truly awful idea this had been.
The fourth floor seemed hours away. She needed a nap. The walls started moving slightly, and she certainly was turning a very unflattering shade of red.
…..that girl was me.
Now I’ll admit that I’m a flirt by nature, so it wasn’t like nerves were causing this reaction. I’ve always been in a healthy weight range, I don’t have asthma, my lungs have been tested and apparently are fully functioning.
So, what could cause a seemingly healthy 20 year old girl to collapse in a sweaty, wheezing fit at the slightest mention of aerobic exertion?
Well it turns out it was just a simple condition called postural orthostatic tachycardia syndrome.
And there it was, an explanation in the form of a POTS diagnosis.
But really, I felt no different than finally having a handy acronym to assign to the embarrassing set of symptoms that had plagued me throughout adolescence.
Rather than the usual fumbling “uh, I just really hate exercise” I could now say, “well I can’t do ‘x activity’ because I have POTS.”
Clearly the queen of cool excuses, I am.
There’s still a lot of trial and error to learn how to best manage my POTS, but here are the things I wish I had known on that first day.
What Is POTS?
As stated above, POTS stands for postural orthostatic tachycardia syndrome. This is a very long and complicated name that can be easily broken down:
Why Does POTS Occur?
Although the name (and the feelings of having a heart attack), may lead you to believe differently, POTS is not actually a heart condition.
POTS does not affect the structure of the heart, and is more rooted in the nervous system!
- Lower amount of blood in the circulation
- Excessive pooling of blood in the lower half of the body when standing
- Elevated levels of certain hormones such as adrenaline and norepinephrine
POTS may begin after an apparent or confirmed viral illness, but it can also appear following surgery and other health events.
POTS and Dysautonomia – What’s the deal?
So, sometimes this can get a little confusing.
Dysautonomia is a term use to describe a set of medical conditions that are all related to the autonomic nervous system.
The autonomic nervous system is the part of our nervous systems that is in charge of the things that we don’t think about – like breathing, body temperature, heart rate, and some other fun stuff.
People living with different forms of dysautonomia have trouble regulating certain key systems, which can result in things such as lightheadedness, fainting, unstable blood pressure, abnormal heart rates, and some more wacky stuff.
There are various conditions that can be classified under dysautonomia, however as you probably guessed the one we’re going to talk about is POTS!
Who Does POTS Impact?
Dysautonomia International estimates that POTS affects between one and three million people in the U.S.
The majority of them are women, although men may also develop POTS.
POTS is less common in young children as opposed to adolescents, and symptoms can often develop during puberty.
What Are The Main Symptoms of POTS?
- Severe and/or long-lasting fatigue
- Lightheadedness (especially upon standing) that can lead to fainting
- Brain fog
- Forceful heartbeats or heart palpitations (a feeling of the heart pounding or skipping a beat)
- Nausea and vomiting
- Excessive sweating
- Intolerance of exercise or a prolonged worsening of general symptoms after increased activity
- A pale face and reddening or purple discoloration of the hands and feet if the limbs are lower than the level of the heart
Treatment for POTS Syndrome
Disclaimer: I am not a doctor or a health professional, and therefore any adjustments to your daily routine and health plan should only be done under the supervision of your doctor.
Step 1: Lifestyle Adjustments
Increase Salt and Fluids
It is recommended that POTS patients increase both their water and salt intake to help reduce symptoms.
Except for the hyperadrenergic subtype of POTS, a fluid intake of approximately two liters and an intake of 3,000 mg to 10,000 mg of sodium is typically recommended per day.
This increase in salt and water can help alleviate some of the symptoms for POTS.
You should work to track your intake and symptoms alongside your doctor to find the ideal amounts for you!
Some of my favorites to get my salt up:
Eat Smaller Meals
Have you ever felt your symptoms flare immediately after eating a huge meal?
This can be because the process of digestion causes the body to divert blood to your stomach and intestines. This leaves less blood to flow between the rest of the body!
Eating smaller meals throughout the day can alleviate these symptoms.
Learn Your Triggers and Limit Them!
There are certain things that can trigger POTS symptoms, and these vary from person to person.
Alcohol is generally a major trigger for people with POTS (which maybe is a scientific explanation that my hangovers are so unbelievably brutal).
Some people may find that caffeine is a trigger, but others may find it has no impact or can even help their symptoms. Lastly, heat and extreme changes in temperature can be a trigger for a flare.
Others note that things like the time of day can have an impact on their symptoms.
Myself, along with many other patients seem to notice symptoms worsen in the mornings. Being mindful of this allows me to make sure not to plan super important events very early in the morning!
Compression garments (such as stockings or socks) can be worn to help with the blood pooling in legs that can be common in POTS patients. Once again, it is important to consult with your doctor to see what the best option for you is!
Dysautonomia International provides an awesome guide to compression stockings here
This is the hardest part of treatment for POTS patients.
As my cardiologist commented, “how the heck are you supposed to exercise when you almost pass out from walking up the stairs?”
This is the reason why I have turned down endless invites to spin and zumba classes over the years. How do you explain to people that you’re out of breath and lightheaded just from walking over to the class?
Related Post: How To Share The News About A Chronic Illness Diagnosis
The key, however, is building up your tolerance for exercise by doing a little bit at a time and building up from there.
Easier said than done, right? The bad news is that it’s probably not going to be too enjoyable.
The good news is that this really is shown to help POTS patients increase their quality of life.
The Children’s Hospital of Philadelphia (CHOP) has a guide for exercising with POTS, and it is extremely thorough!
Standing Up To POTS recommends implementing a reward system to help you keep on even when it feels impossible. You can put beads in a jar for every five minutes of aerobic or resistance exercise and then choose a reward when the jar is full.
As I mentioned above, temperature control is key for POTS patients.
Heat is often reported to aggravate symptoms, so make sure that you are prepared if you have to be in warmer environments.
Wear loose clothing designed to help regulate temperature, and you can use bags of frozen veggies as an easy ice pack!
Elevate Head of Bed
It is recommended that you elevate the head of your bed, which can be done using bricks or a few large textbooks.
This is done in order to help (re)condition the body to properly distribute oxygen when upright.
It is important that you are elevating the whole body, so that your hips are higher than your feet. This is why the entire bed needs to be tilted!
Pro tip: if your symptoms are really bothering you (particularly after standing for an extended period of time), try laying down with your feet propped up like mine in the picture below! This will help push blood back towards your brain and heart + alleviate some of those symptoms (:
But what happens if all of this stuff doesn’t help?
Step 2: Medical Intervention
When the above “lifestyle adjustments” do not work as a treatment for alleviating POTS symptoms, you and your doctor will work together to develop another plan that could possibly include options such as:
- Improving blood volume through infusions
- Helping the kidneys retain sodium (e.g., fludrocortisone)
- Reducing heart rate or blocking the effect of adrenal hormones on the heart (e.g., beta blockers)
- Improving blood vessel constriction (e.g., midodrine)
Remember that although it can sometimes feel like it, you are not alone in living with your POTS symptoms and they are very real. Research has shown that the disability in POTS patients is comparable to the disability seen in conditions like COPD and congestive heart failure.
Read that again.
The disability in POTS patients is comparable to the disability seen in conditions like COPD and CONGESTIVE HEART FAILURE.
I starting showing symptoms of POTS when I was age 10 after having a severe illness. Doctors repeatedly wrote me off, even diagnosing me with asthma while simultaneously indicating in my chart that my lung functioning tests were completely normal and did not show anything that would point to me having asthma.
So for the next fourteen years I lived with these symptoms.
Even when they repeatedly landed me in the ER, doctors saw a healthy young girl and scoffed at my insistence that I couldn’t WALK a lap around the track without getting so lightheaded that I physically needed to sit down.
They encouraged me to work on my anxiety without ever even picking up a stethoscope, and I learned that it was acceptable to walk around feeling comparable to someone in congestive heart failure.
Growing up, I was forced to participate in gym classes and physical activities that truly made me question if I was dying. I tried insisting to everyone that my heart, indeed, might really be exploding out of my chest and everything looked a little blurry, but over and over I was told that I was fine.
But I wasn’t fine.
I shouldn’t have been forced to do activities that I physically was not able to do, and neither should anyone reading this post. You shouldn’t feel pressured into joining that hot yoga class with your friend, or going out for a night of binge drinking. You shouldn’t feel judged for not taking the steps to the 6th floor (or even the 2nd one, damnit) or for asking to save that outdoor activity until the sun goes down and it cools off outside.
No one would even think to give a person with congestive heart failure or COPD a hard time about any of those things listed above.
You don’t deserve them either.
Just because your illness may not always be the most obvious, doesn’t make it any less valid or any less severe. And THAT’S the biggest thing that I wish I had known when I received my POTS diagnosis.