Being told you have a chronic condition like POTS can be a scary thing to hear. It doesn’t matter if you are newly diagnosed or searching for more information. This article is for you! Hopefully, this post can also be helpful to share with your friends and family to explain what you are dealing with. Today’s post will take a look and answer this question, “What is POTS and how does it affect people?”
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What is POTS?
I’m going to warn you, this post will contain a lot of big fancy medical terms! Hopefully I can explain this in a way that’s easy to understand. POTS, or Postural Orthostatic Tachycardia Syndrome, is a chronic form of Dysautonomia, or malfunction of the autonomic nervous system, to which there is no known cure. Each one of the big fancy words in the acronym has a meaning:
- Postural- this is related to the position of your body
- Orthostatic- this is related to standing up
- Tachycardia- this is related to your heart rate
- Syndrome- this means a group of symptoms that happen together
In short, people with POTS have an exaggerated heart rate from sitting or lying down to standing up. This is a type of orthostatic intolerance. Generally, your autonomic nervous system controls your heart rate and blood pressure to prevent this from happening. However, this act of constricting blood vessels to control blood flow does not occur regularly in those with POTS. Unfortunately, this can lead to a long list of symptoms which can affect people differently. So, let’s take a look at some of the common symptoms to further find out the answer to our question, “What is POTS and how does it affect people?”
How Does POTS Affect People?
POTS has the word “syndrome” in the acronym because it can cause a long list of conditions and symptoms. Oddly enough, these symptoms can be completely different from case to case. Here is a great video that explains more about POTS and also discusses some of the common symptoms it can cause:
As you undoubtedly can see from from this video, POTS can be a very troublesome condition to live with. This is due to the broad range of symptoms POTS can create.
Common Symptoms of POTS
- Forceful heartbeats or heart palpitations (the feeling of your heart pounding or skipping a beat)
- Light headedness and/or dizziness
- Higher or lower blood pressure
- Faster or slower heart rates
- Syncope, or passing out
- Severe and long lasting fatigue
- Headaches and body aches
- Sound and light sensitivity
- Blurred vision
- Nausea, upset stomach, vomiting
- IBS- irritable bowel syndrome
- Blood pooling particularly in lower extremities
- Brain fog
- Low tolerance levels to physical activity
- Excessive sweating, most commonly during sleep
- Insomnia
- Constant Flu like symptoms
- Anxiousness
- Numbness and tingling in extremities
- Shortness of breath
Surprisingly, this is just a short list! Recently, doctors have also discovered that the symptoms can be different based on what triggers POTS. For instance, studies like this one have revealed that POTS symptoms can be more severe, or in “fight or flight” mode, if caused by COVID. I can also personally attest to this as my POTS was triggered by a mild case of COVID. Consequently, my symptoms have been severe and very difficult to manage.
Read this post on My Unexpected Battle With POTS to find out more about my story!
What Causes POTS and Can It Be Prevented?
Unfortunately, there is no single cause of POTS. Instead, there are many things that can lead to POTS. As a result, doctors are still trying to determine what actually causes POTS. Sadly, there is also nothing you can do to prevent getting it. However, there are certain factors that may increase your chances of getting it such as:
- Significant diseases or conditions (like Multiple Sclerosis, Diabetes, and Anemia)
- Illnesses and viruses (like Mononucleosis and COVID)
- Serious infections
- Pregnancy
- Physical trauma, such as a head injury
- Surgery
People who have autoimmune conditions like Sjogren’s syndrome, lupus, and celiac disease, are also more likely to develop POTS.
Does POTS Affect A Certain Group of People?
POTS does not affect only one specific gender or age group. However, it is most common in females ages 15-50. Recently, there have been an increase in cases with males post-COVID.
It is estimated that 1-3 million Americans currently have POTS. Shockingly, as common as it may be, the medical world is still trying to figure this chronic condition out. As a result, there are not a lot of doctors who know how to diagnose and treat POTS. It is crucial to your recovery to find a POTS and/or Dysautonomia specialist who can help you! I would also suggest that you find others who have POTS. No one understands what it’s like to live with a chronic condition better than those who also have one.
If you do have POTS, I highly recommend visiting Dysautonomia International’s website. They have search tools to help you find doctors and support groups in each state!
How is POTS Diagnosed?
POTS can be difficult for doctors to diagnose due to the many symptoms that can occur over time. People with POTS may have symptoms for months to years before finally being diagnosed. It personally took me 8 months before I was officially diagnosed with POTS.
Typically, your doctor will ask questions about your symptoms. Next, they will review your medications and medical history. After that, they will begin a series of tests and examinations in order to rule out other possibilities. This process of elimination is what takes so long to find a diagnosis. However, they must do this in order to rule out other conditions.
A tilt table test is the main way doctors diagnose POTS. The tilt table test measures your heart rate and blood pressure as you change from laying down to standing up. However, it is possible to “fail” the tilt table test and still have POTS. This is because you need to be experiencing symptoms when the test is performed. As you know, POTS varies from day to day. So, if you get tested on a day that you are feeling well and having minimal symptoms, then you could possibly have a negative result.
Besides the tilt table test, your provider may order other tests to help confirm a POTS diagnosis or rule out other possible causes of your symptoms, including:
- Blood and urine tests for causes of POTS and conditions that mimic POTS
- QSART (a test that measures the autonomic nerves that control sweating)
- Autonomic breathing test (this measures your blood rate and pressure response during exercise)
- TST (tuberculin skin test)
- Skin nerve biopsy
- Echocardiogram
- Blood volume with hemodynamic studies
How Is POTS Treated?
Treatment for POTS also varies from case to case. This is due to the fact that no single case of POTS is the same. However, here are some common treatment plans you can try!
- Increase fluid and salt intake (try using these electrolyte packets from LMNT!)
- Eat multiple small meals each day instead of 2-3 large ones
- Wear compression stockings like these (waist high is best with medical grade 20-30 mmHg compression)
- Exercise Therapy Plan like the Levine Protocol
- Diet and Nutrition Plans high in fiber and low in simple carbs
- Learn your triggers and make life changes to avoid them
- Sleep with your head elevated a minimum of 4-6 inches (try this wedge pillow!)
- Avoid sitting or standing for log periods of time
- Get on a daily sleep schedule and avoid taking naps
- Avoid alcohol (read this post to find out some great non-alcoholic alternatives!)
- Avoid heat and humid environments
- Medication
Check out these other posts for other helpful tips:
5 Simple Tasks That Will Change Your Life
My Top 5 POTS Savers That Will Make A Huge Difference
Is There A Cure for POTS?
Unfortunately, there is no cure for POTS. This means it is very important to find a treatment plan that works for you and to stick with it. It is also crucial for you to learn what your symptom triggers are so you can know how to avoid them.
Check out this post on POTS triggers and how to avoid them!
Dealing with a chronic illness can be a very difficult thing to handle mentally. It is hard to not feel defeated by your illness. As a result, it is important to focus on your mental health.
Do not be afraid to seek help if you are struggling mentally. Just try to focus on whatever it takes to improve your quality of life.
Here is a helpful post on how mental health can make or break your symptoms.
What is the Outcome for People With POTS?
POTS can affect people differently so the cases range from mild to severe. The majority of people with POTS can eventually return to a normal level of functionality. Most people see their symptoms decrease or go away completely over time. Others will have ongoing relapses and triggers in symptoms throughout their lives. However, only about 25% of cases lead to major physical impairment and disability. I am currently one of the 25% but am doing my best to get stronger each day and hope to out of this statistic group soon!
The functionality of those with more severe cases have been compared to those who have chronic obstructive pulmonary disease (COPD) or congestive heart failure. Also, the quality of life has been compared to those who are on dialysis for kidney failure. All of this depends on the severity of your case. However, POTS can be a very debilitating condition that can make simple tasks such as brushing your teeth be difficult.
The outcome and severity of POTS also depends on what type of POTS you have. Here are the 4 different types:
- Neuropathic POTS: when peripheral denervation (loss of nerve supply) leads to poor blood vessel muscles, especially in your legs and core.
- Hyperadrenergic POTS: when your sympathetic nervous system is overactive and you have higher levels of the stress hormone, norepinephrine.
- Hypovolemic POTS: when reduced blood volume can lead to POTS. Low blood volume can cause similar symptoms that may overlap in neuropathic and hyperadrenergic POTS.
- Secondary POTS: when POTS is associated with another condition known to potentially cause autonomic neuropathy
Each one of these types are caused by different factors that will also create different levels of symptoms and severity.
Closing Thoughts
Although POTS can be a scary condition to be diagnosed with, it doesn’t have to be a death sentence! Statistically, you have a great chance to beat it. Just remember, only 25% of cases of POTS lead to major physical impairment or disability. That means 75% of people with POTS eventually get back to a normal functioning level of life. That’s a high majority of positive results!
Keep trying and don’t lose hope! You will need to make some life changes and that can be exhausting. For instance, you will need to exercise consistently as long as your body can physically handle it. Sounds tiring right? However, it will be worth it in the end! As a result, you will also get in the best shape of your life.
Be honest and open with your friends, colleagues, bosses, and family. This will help you gain support from those around you and also explain why you may need to avoid certain activities. Most importantly, speak with your doctor to find what works for you and stick with that plan! You got this!
Hopefully this post clearly answered our question, “What is POTS and how does it affect people?” One thing I have learned is you have to be your own advocate. So, don’t stop researching and fighting for your recovery!
I would love to hear more about your journey with POTS and how this blog is helping you. Please feel free to comment below!