6 Symptoms of Dysautonomia/POTS and How They Actually Affect My Life

I was diagnosed with my first form of dysautonomia when I was going into my junior year of high school. Postural orthostatic tachycardia syndrome (POTS – you can imagine the jokes I got telling people I had POTS at age 16) is actually way more common than you might think. Although not everyone who has it is severely affected — in fact, many don’t even know they have it — it is estimated to affect between 1 and 3 million Americans.

The basic diagnostic criteria for POTS are a heart rate increase of 30 beats per minute (bpm) or more or a heart rate higher than 120 bpm in the first 10 minutes of standing. A tilt table test is usually used for diagnosis. Some of the major symptoms of POTS (as well as of other forms of dysautonomia) include abnormal heart rate and blood pressure, lightheadedness and dizziness that can lead to fainting or pre-syncope, fatigue, headaches, nausea, exercise intolerance, brain fog or trouble concentrating, chest pain, and more.

Now that you have a basic understanding of dysautonomia/POTS and some of the basic symptoms, I want to explain further a few of these symptoms and how they affect me and other people who have this condition.

1. Temperature Regulation

Since getting sick, I’ve developed an awful problem with being unable to regulate my body temperature. Whenever the outdoor temperature drops below 72 degrees, you’ll find me dressed in layers with goose bumps on my arms and legs. When it’s below 60, it’s hard for me to go outside without getting awful, full body chills, no matter what kind of coat I’m wearing. Rain, wind, and any other kind of overcast yuck just speeds up the quick drop in temperature that happens whenever the weather isn’t a perfect 75 and sunny!

By temperature regulation problems, I mean my temperature will drop as low as 92.5 degrees F (95 and below is hypothermic!) and stay there until I spend an hour or more wrapped up in blankets in front of my favorite fireplace. Full body shivers, goose bumps, purple lips, feeling like you’re laying in a freezer, and all of this because I walked outside on a 60 degree day. It’s pretty frustrating. During the winter, going anywhere can be a challenge. Having my temperature drop so low when I’m not somewhere where I can warm myself back up is not fun and it’s not healthy.

On the flip side, I have a pretty severe heat intolerance. Going out in the sun on a 85 to 90 degree day can send me into a flare-up that leaves me dizzy, fainting, and fatigued to the point that I need a two-hour nap and a liter of fluids. Not being able to go outside for any length of time during the summer is a bummer. No sun bathing, no walking my dog during the day, I can’t take the kids I watch to the park unless it’s overcast or I have my sister with me so I can sit in the shade or in the car. It’s very limiting and frustrating to have these intolerances, but it’s pretty common for those with dysautonomia.

2.  Stand up slowly!

So, imagine waking up in the morning and having to lay in bed for anywhere from two to 10 minutes (for some people it’s even longer) before sitting up, and then sitting on the side of your bed for at least a minute or two, sometimes more like five minutes, before standing up. For people with dysautonomia/POTS, this is a daily routine. Because of the change in heart rate and blood pressure, going from laying down to standing up too quickly can lead to losing consciousness.

Now, this doesn’t only affect you first thing in the morning. If I’m lying on the couch and someone rings the doorbell, I can’t just get up and run to the door. I have to sit up — wait — and then slowly stand up and make my way to the door; otherwise, I’ll end up on the floor. Yes, I know this from experience.

3. Driving

Many people with different forms of dysautonomia cannot drive. Because of fainting spells, brain fog, and chronic fatigue, driving can be an extremely difficult task. Imagine living an adult life without access to a car. Now imagine trying to get to and from weekly doctors appointments, therapies, and ER visits without being able to drive yourself. Not everyone who suffers from these illnesses has a good support team and it can make it extremely difficult to get adequate care when you aren’t supposed to drive.

4. Orthostatic intolerance

I mentioned that changing position is extremely difficult for those of us with POTS, but for many people with POTS as well as for people with other forms of dysautonomia such as neurocardiogenic syncope, just standing in one place or walking for too long can be difficult. Things such as grocery shopping, cooking dinner, or even just taking a shower become very difficult when your heart rate and blood pressure are so affected just by standing up.

5. Exercise and heart rate

Exercise intolerance is another one of the most frustrating parts of dysautonomia/POTS. We are encouraged to exercise to strengthen our legs and core to try to help our symptoms, yet at the same time we are told that exercise can make our symptoms worse. Because our heart rates are so high and orthostatic intolerance prevents us from certain exercises, it can be difficult to find the right form of exercise as well as the right balance between exercising enough to help strengthen without pushing too far, and creating more problems. Some of the forms of exercise recommended for those with POTS
are reclined exercising, recumbent biking, swimming, rowing and weight training.

6. Fatigue

The fatigue that dysautonomia/POTS can bring on is… exhausting. Some days it’s nearly impossible to get out of bed. Because our bodies have to work so much harder every time we stand up, we get much more tired much quicker. Sadly, this can lead to loss of jobs and having to take time off of school. It’s not just being tired or lazy, it’s muscle weakness and full body and brain exhaustion. I would say it’s like running a marathon and taking the SAT in the same day, but I would rather do that.

Having a severe case of any form of dysautonomia is truly debilitating. It can take away your ability to work, to care for yourself on your own, to socialize the way you want to, and to live the kind of full life that you had planned out. Dysautonomia is also a chronic and invisible illness. It can be extremely difficult to find adequate care. Even most doctors aren’t up to date on these illnesses, and many don’t even know what POTS is. Being a young, chronically ill woman can be hard and discouraging when your illnesses are not ones that have a lot of research and treatment behind them. Finding doctors that have knowledge about your illness as well as respect for their patients is truly a challenge.

October is Dysautonomia Awareness Month, so thank you for reading this article and please take time to share and continue the conversation on this condition as well as others that need attention in order to continue to work towards a cure.

Follow this journey on Positively Rachel.