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12 'Embarrassing' Symptoms of POTS We Don't Talk About

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Although postural orthostatic tachycardia syndrome, or POTS, is often associated with changes in heart rate, it can actually cause a variety of symptoms throughout the body. And while these symptoms may be out of your control, the reality is that sometimes they can feel a bit “embarrassing.”

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According to Stuart Berger, M.D., the executive director of the heart center and interim division head of cardiology at Ann & Robert H. Lurie Children’s Hospital in Chicago, POTS is most likely a syndrome in the realm of autonomic dysfunction.

The autonomic nervous system (ANS) controls all the “automatic” or involuntary functions in the body, such as blood pressure, digestion and breathing. “[It] is important in the health and disease of essentially every organ system in the body,” Dr. Berger told The Mighty. “Therefore if there is an abnormality in this system it can affect any and all systems and can manifest in a multitude of ways.”

While there are numerous forms of autonomic dysfunction, POTS has very specific criteria that hinge upon the response in heart rate to orthostatic changes. This means symptoms typically develop upon sitting or standing from a reclining position and can be relieved by sitting or lying back down.

Though the effect of orthostatic changes on heart rate is one of the defining characteristics of POTS, symptoms can vary widely as autonomic dysfunction can affect so many different parts of the body. “When you have a systemic issue such as an autonomic issue, it can manifest in so many different ways, and every patient’s a bit different,” Berger said. “If you have a problem with the autonomic function it can affect each and every organ.”

If you live with POTS, you’re likely familiar with the wide range of frustrating symptoms the condition can cause. And while there’s no reason to feel ashamed of any symptoms or side effects you experience, the reality is that it can still feel embarrassing sometimes when autonomic dysfunction causes you to suddenly faint in public or sweat uncontrollably during an important work meeting.

Even though many of the symptoms of POTS may be challenging to cope with, know there are options available. According to Berger, the prognosis for those with POTS is generally good. “Depending upon the symptom constellation patients with POTS may benefit from consultation with numerous sub-specialists including generalists, cardiologists, neurologists, gastroenterologists, rheumatologists, psychologists, and psychiatrists,” he recommended.

There are also a number of treatments available depending on your symptoms. Berger explained:

[POTS] is typically treated with supportive care but some of the mainstays of therapy include assuring adequate hydration status and promoting aerobic exercise. It is ideal to try this approach initially recognizing that it can be successful for an undefined subset of patients. Others may potentially benefit from medical therapy such as mineralocorticoids or beta-blockers.

Whatever symptoms or side effects of POTS you may be struggling with, know you’re not alone. Our Mighty community is always here for you as well.

It can be difficult to talk openly about these more “embarrassing” symptoms, but in doing so, we’re both raising awareness of these symptoms are reminding other POTS warriors that they’re not alone. That’s why we asked our Mighty community to share some of the “embarrassing” symptoms of POTS they’ve experienced — symptoms we may not talk about often, but ones that deserve recognition and understanding nonetheless.

If any of the following experiences sound familiar, know you’re not alone.

Here’s what our community shared with us:

1. Inability to Regulate Temperature

Since temperature regulation is controlled by the autonomic nervous system, autonomic dysfunction (including POTS) can make it difficult for the body to maintain an even temperature. You may find yourself feeling way hotter or way colder than those around you – and your body might not be the best at adjusting to extreme temperatures.

While it may feel a bit awkward at times to run at a different temperature than your friends, know there’s no reason to feel ashamed for doing whatever you need to do for your health. Maybe that means carrying around a portable fan in case you get too hot, or wearing several pairs of socks because you always run cold. You do you!

Not being able to regulate my temperature and sweating like crazy when everyone else is comfortable or cold.” – Micca H.B.

“Having it warm all the time while other people are saying, ‘do just normal, it is cold.’ Or: that I forget to turn on the heating in my house because I am always warm. Having people who are coming to visit me with an extra sweater because my house is so cold.” – Nick B.

“The extreme body temperature drops I experience. I will just sit with full body shakes for hours.” – Melany M.

2. Brain Fog

Brain fog is a type of cognitive dysfunction that involves memory problems, poor focus, and a lack of mental clarity. It is a common symptom across many chronic illnesses, including the various forms of autonomic dysfunction.

According to Berger, every POTS patient is different and may experience different manifestations of autonomic issues. Some POTS patients may experience occasional brain fog, while for others, it could be one of their most predominant symptoms. It is completely possible for someone with POTS to experience primarily neurological symptoms, Berger explained.

While physical symptoms can certainly be difficult and “embarrassing” at times, brain fog may be especially challenging — and even a bit scary at times. Know that however “foggy” you may feel, in no way does it affect your intelligence or value as a person.

Brain fog. I can be so out of it at times that when I talk it sounds like I’m drunk. I slur, stutter, repeat things, and forget the words for common things. It makes me horribly self-conscious if I’m in a bad flare because I know it gets worse whenever I’m in a bad way. But, then overthinking it makes me feel like it’s even more apparent. I avoid talking to new people at all costs and sometimes even limit speaking to those close to me to save myself the embarrassment. It’s a catch-22, though, as that’s when I need people the most.” – Caitlin M.

“Forgetting the names of things. It just makes me sound younger and ditzy when I’m at work and people then don’t take me as seriously.” – Maria M.C.

3. Dilated Pupils

The autonomic nervous system typically controls pupil dilation, automatically widening or narrowing your pupils in response to their exposure to light. If you’re experiencing autonomic dysfunction, this could affect your pupil dilation.

However, dilated pupils (also known as mydriasis) could be caused by a number of factors, including medications, brain injury, and drug abuse. It can be hurtful if others make assumptions or judgments simply based on looks.

“Dilated pupils; everyone thinks I’m on street drugs and treats me terribly; I have had strangers approach me and yell at me to ‘get off the drugs.’ It is awful.” – Jo C.

4. Tremors

According to the National Institute of Neurological Disorders and Stroke, tremor is an involuntary, rhythmic muscle contraction leading to shaking movements in one or more parts of the body. It is a common movement disorder that can occur on its own, or as a symptom of an underlying medical condition. Those with POTS may experience tremor as one of the characteristic symptoms of orthostatic intolerance, along with shakiness, anxiety, and cold, sweaty extremities.

While many people may go from sitting to standing without a second thought, it can be challenging to experience visible symptoms in response to an “everyday” activity — especially when others don’t understand your illness or how it affects you.

“Having significant tremors in your body standing up because your body is trying to compensate [for] the improper blood flow. It’s embarrassing to all of a sudden look like you don’t know how to walk and your hands go limp or curl in due to nerve malfunction/spasticity.” – Cristina M.

“An embarrassing part of having POTS that I haven’t heard many people discuss is how difficult it is to shave your armpits, lol. I can’t keep my head turned in that position because I’ll pass out. Another thing is how much I tremor, and the daily hypnagogic jerks I get. They’re like the jerks/muscle spasms people get when they’re falling asleep, except I get them in the middle of the day for no reason at all.” – Elizabeth M.

5. Excessive Sweating

Sweating is one of the bodily processes controlled by the autonomic nervous system, so those who have POTS or other autonomic disorders may experience either excessive sweating (hyperhidrosis) or a lack of sweating (anhidrosis).

Excessive sweating can sometimes be a bit embarrassing — whether you’re spending time with friends or attending an important job interview — but there’s no need to be ashamed of something that’s out of your control. There are a number of products and tips that may help you cope, and your doctor may be able to provide recommendations as well.

“Sweating. It’s super excessive and causes skin issues. It makes me smell gross sometimes.” – Kacee A.W.

“Sweating — my body (nervous system) constantly works in overtime and it causes my body to sweat excessively. I can be doing nothing and still sweat, which is pretty embarrassing. So black clothes are my best friend!” – Amber M.S.

“Bro, the random sweaty feet and palms. Trying to shake a superior’s hand and not blush when your hands meet because you know your hand feels gross.” – Ashley V.

6. Nausea/Vomiting

Since every POTS patient is different, some may primarily experience gastrointestinal symptoms, such as nausea, vomiting, or poor feeding, Berger explained. Others may experience GI issues in conjunction with other symptoms, such as fainting. This can occur because digestion and the passage of food and drink through the GI tract is controlled by the autonomic nervous system, which malfunctions in those with POTS.

No one wants to be ill — whether you’re in public or private. That being said, getting sick in public can be especially difficult if it attracts unwanted attention.

“I have heat intolerance due to POTS and when I get overheated, I get violently sick with projectile vomit.” – Brittany N.

“Passing out in the worst places and the vomiting after passing out.” – Yesenia R.

7. Fainting/Syncope

Orthostatic intolerance — the defining characteristic of POTS — means that the blood pressure does not remain stable when a person goes from lying down or sitting to standing. This can result in lightheadedness or fainting (also known as syncope).

Passing out in the middle of a crowd or waking up to a group of concerned onlookers can be uncomfortable, but it can also be scary to lose consciousness, whether you’re alone at home or out and about. If you need to quickly sit down and put your feet up to help avoid fainting, there’s no shame in doing so, no matter where you are.

Presyncope/syncope — standing up and never knowing if I will pass out, fall backwards, fall into things, plus grabbing the walls or door frames to hold myself up.” – Ashlea M.

“Passing out is always embarrassing, especially if I wake up to an ambulance crew.” – Shayla F.W.

“Having to sit or lie down in the middle of a store when the presyncope or extreme fatigue and weakness hits. I hate drawing attention to myself, so I usually pretend to just be looking at something on the bottom shelf.” – Kelsey M.

8. Blood Pooling

The autonomic nervous system is responsible for controlling heart rate and blood pressure. When a healthy individual stands up, gravity naturally pulls their blood down to their feet, but the ANS helps it keep circulating and flow back up to their heart. In those with POTS, this function typically performed by the ANS doesn’t work as well, so blood tends to “pool” in their lower extremities upon standing.

Blood pooling can cause your lower legs and feet to change color, turning shades or red or purple. Coping with the more “visible” symptoms of your condition can sometimes be tough, but know it’s OK to sit down and take time to rest and recover if you need to.

“Blood pooling/swelling. It’s always so embarrassing wearing sandals and having people look at my feet.” – Kayleigh C.

“Once, while waiting for an elevator, I was moving my legs around a lot to prevent blood pooling, and another woman waiting looked at me strangely and with a little concern and said, ‘honey, do you need to pee?’ I am in my late 30s, so this was embarrassing and made me self-conscious about some of the things I need to do to manage during the day.” – Rose S.

9. Exhaustion

Fatigue and exhaustion are common in the POTS community. Though the exact mechanisms behind POTS-related fatigue are not well understood, some believe people with POTS tend to be more exhausted because the heart has to work harder to pump blood throughout the body.

If you’ve ever had to cancel plans or lie down in the middle of a store to rest because you’re just so exhausted, you know how hard it can be to function with very different energy levels than your healthy friends. Know you deserve to utilize any accommodations that help you navigate life a bit more easily.

“The exhaustion. My HR [heart rate] constantly being up means my body thinks its running all the time, and it’s exhausting. It causes chronic fatigue, which causes brain fog. I lose things, forget things, call out of work a lot and bail on plans with friends and family because I’m too tired or forget. I fall asleep if I have to drive too far, or if I don’t get to nap at least once a day.” – Alexandra E.

10. Dizziness

Along with the lightheadedness that can result from orthostatic intolerance, some people with POTS may also experience dizziness after standing up. Some studies have also found that vestibular symptoms, including dizziness, vertigo, and gait unsteadiness, are common in those with POTS.

Feeling dizzy or unstable can be tough to manage, especially if the people around you don’t understand why you’re feeling or behaving a certain way. Dizziness can occur for any number of reasons, so others might make incorrect assumptions about the reasons behind your symptom.

“When I get really bad dizzy spells I sometimes zone out to control the symptom and anyone around me gets confused and tries to snap me out of it. It’s frustrating and embarrassing because I’m aware of my surroundings one moment and then not the next. It doesn’t happen often, but when it does it’s frustrating!” – Yölanda A.

“Being dizzy constantly and trying to walk. Sometimes I can look like I’m under the influence. Now I just walk with a walker or cane, making it easier to catch myself. I still get stared at which is unfortunate.” – Carlie L.W.

11. Facial Flushing

The autonomic nervous system controls functions of the skin and blood vessels, which includes facial blushing and flushing. Facial flushing occurs as a result of increased blood flow. It can be a response to an emotional state, or a sign of an underlying medical issue if it’s recurring. Though the exact cause isn’t known for sure, people with POTS may experience facial flushing or redness due to autonomic dysfunction and issues with their blood vessels.

Even if you’re not “blushing” out of embarrassment, you may feel a bit self-conscious if your face tends to flush for no apparent reason. Just know you are beautiful, no matter what shade your cheeks may be.

“Most common is my face flushed for no reason. Not like a little pink in the cheeks, more like my whole face is red.” – Ansley D.M.

“Flushing very noticeably and easily! My face gets so red!” – Serena V.

12. Bladder and Bowel Incontinence

Since the autonomic nervous system controls digestion, urination, and defecation, autonomic dysfunction can affect these processes, causing issues such as incontinence.

It can certainly feel a bit uncomfortable to try to explain that no, you can’t hold it, and yes, you really need to go to the bathroom now. But with millions of people in the United States dealing with urinary incontinence every single day, know you are far from alone.

“The autonomous dysfunction — needing to pee at random and suddenly when I’m in a flare.” – Celia E.R.

“Sudden bowel incontinence — being unable to control my bowels. One minute I am fine with no urge to use the restroom and the next I either have to race to the bathroom or it is too late. It is so embarrassing and sometimes I have to carry more clothing with me in case I have an accident.” – Hannah W.

“My friends make a joke about how I always have to have the entryway to a bathroom anywhere we go but it’s tough too because I am always having to leave to pee. Although I’m glad we can find some humor in this wild chronic illness life.” – Alyssa A.A.

What’s an “embarrassing” symptom of POTS you experience? How do you cope with it? Let us know in the comments below.

Photo by Benjamin Voros on Unsplash

Originally published: April 18, 2019
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