POTS & DYSAUTONOMIA
Postural orthostatic tachycardia syndrome (POTS) produces dizziness with standing and activity. It is a disorder of the autonomic nervous system (the autonomic nervous system controls functions that occur automatically like heart rate, blood pressure, digestion, sweating). Other symptoms include fatigue, nausea, vomiting, headaches and fainting.
We do not know what exactly causes POTS but it may come on suddenly after a viral illness, pregnancy, surgery or an injury. Many times there is no trigger. A significant percentage of people have an underlying genetic disorder of connective tissues called Ehlers-Danlos syndrome (EDS).
POTS is rather common, first showing up in adolescence or age 20-40. Both genders can be affected but POTS is more common in women. Fortunately, there is growing awareness of POTS, but even so many patients are told they are just anxious or there is nothing wrong with them.
Dr. Saperstein has diagnosed and managed over 2,500 patients with POTS. Here at the Center, we will help you deal with a potentially debilitating condition.
WHAT HAPPENS WHEN YOU HAVE POTS?
With POTS, the body does not control blood pressure or heart rate as it should after you stand up. So for a brief time, you may not get enough blood to your brain.
People with severe fatigue and dizziness may find it hard to keep up with daily living. But treatment can help.
WHAT ARE THE SYMPTOMS OF POTS?
POTS can make you feel dizzy and lightheaded. You may faint. You may also feel tired. Blurred vision and feeling anxious are also symptoms. And you may have trouble with keeping your attention focused. Symptoms can range from mild to severe.
People with POTS commonly have gastrointestinal symptoms as well, such as nausea, bloating, diarrhea, and constipation.
Some things can make symptoms worse. These include heat, eating, exercise, showering, sitting too long, and menstrual cycle changes.
When you first notice symptoms, sitting or lying down may help you feel better.
WHAT CAUSES POTS?
POTS may follow a viral illness, a surgery, pregnancy, bed rest, or a severe trauma. Some patients develop POTS as part of a genetic disorder of collagen called Ehlers-Danlos syndrome. In many cases, there is no clear trigger. Experts don’t understand what causes POTS, but different body systems seem to be out of balance.
HOW IS POTS DIAGNOSED?
To learn what is causing your symptoms, your doctor may:
- Ask about your symptoms, including when and how they started.
- Check how your blood pressure and heart rate change when you move from lying down to sitting to standing.
- Do a tilt table test. The test uses a special table that slowly tilts you to an upright position. It checks how your body responds when you change positions.
HOW IS POTS TREATED?
Medications can help but there is also a large role for so-called “self-care” that involves lifestyle changes.
- Medications: For some people, taking medicine that is normally used for high blood pressure can help. Taking medicine that keeps the body’s fluids balanced may also help.
- Everyday self-care. These practices can be a key part of helping the body get back in balance.
- It is important to avoid standing still for prolonged periods of time. Walking in place of tensing your calves can help. If you feel lightheadedness coming on, there are some so-called “counter-maneuvers” that can help eliminate or decrease orthostatic intolerance symptoms. One is crossing your legs and tensing the muscles in your legs, stomach, and buttocks until the symptoms pass. Another maneuver is squatting down on one knee.
- Drink plenty of fluids. Daily intake should be 2 to 3 liters (70 to 100 ounces, or just under one gallon). That amounts to 4 to 6 bottled waters.
- Some patients find that drinking a glass or bottle of water quickly can temporarily relieve their orthostatic intolerance symptoms. Drinking water before getting out of bed helps some patients.
- Most people with POTS need to significantly increase their daily sodium intake. Daily needs for salt for POTS range from 3 to 10 grams. One tablespoon of salt equals 15 grams.
- Elevate your head during sleep. This is done in order to help condition the body to the effects of gravity. The best way to do this is to raise the head of the bed with a few bricks or large books. A wedge pillow is not very helpful for this. Elevating the whole body and having the feet lower than the hip area is needed to get the intended benefit. A wedge pillow only elevates the shoulders and head but does nothing to change the position of the hips or the lower legs.
- Compression garments. Compression support hose and abdominal binders can be helpful for some POTS patients by lessening pooling of blood in the legs and, therefore, keeping more of the blood getting to the brain. The most effective compression hose are 30-40 mm Hg of ankle counter pressure and go waist high. There are many different varieties such as closed-toe and open-toe, knee-high and waist-high. All varieties are available for each gender and may be subsidized through some insurance plans as a durable medical good with a doctor’s prescription. Some brands are more comfortable and breathable than others, so don’t give up on compression stockings simply because the first pair you try are not comfortable. Two websites that are helpful for finding compression stockings are compressionstockings.com and www.brightlifedirect.com. Compressionstockings.com will tell you how to determine what size you need. Do not wear compression stockings to bed.
- Avoid heat as much as possible. Heat can aggravate the symptoms of POTS.
- Try a special exercise program. Your doctor may give you a program of specific exercises. You start short and slow, especially if fatigue is a problem. Add a little at a time. At first, you only do exercise when you’re reclined. After a few weeks, you start to add upright exercise.
- Adjust your activities. POTS may require you to reduce your activity load, get more sleep, and change your schedule. It is helpful to plan activities for the time of day that is best for you; for many POTS patients, the morning is particularly difficult. It is also helpful to keep your schedule flexible as symptoms can flare-up without much notice or forewarning.
- POTS symptoms can be aggravated by a variety of situations and activities. It’s helpful to find out what exacerbates your symptoms so you can avoid or mitigate a flare-up and plan ahead.
What is Dysautonomia & POTS?
POTS Symptoms & Treatments
What Treatments Do You Offer for POTS that Are Different?
Dr. Saperstein’s Success Stories
Hyperadrengenic POTS
Seizures & Fainting in Dysautonomia
Brain Fog
POTScast E:90 – How Did You Become an Expert in POTS?
POTScast E:90 Do We Know What Causes Brain Fog?
POTScast E:90 Neuropathy & How it Relates to POTS
“Coat Hanger Pain” Part 1
“Coat Hanger Pain” Part 2
POTScast - How Do You Describe POTS?
Salt Supplementation in POTS Part 1
Salt Supplementation in POTS Part 2
Salt Supplementation in POTS Part 3
FREQUENTLY ASKED QUESTIONS
(from our social media followers)
The best results come from treating, as best as possible, the underlying causes, such as dysautonomia, MCAS, and sleep disturbances.
This would be unusual. However, a number of patients with POTS have episodes that look like seizures, but are complications of not getting sufficient blood to the brain due to POTS.
It is hard to give a general answer to this as it depends on many factors. There are specific diets and medications that can help with gastroparesis and nausea/vomiting. Abdominal pain can be from POTS itself or from MCAS.
It is very common. Heat can aggravate, or flare POTS. Best to make sure showers are not too hot.
It very much depends on what is causing the pain (such as neuropathy, abnormal gastrointestinal movements, bladder issues, migraine). This includes taking into account issues often seen with dysautonomia such as EDS and MCAS.
“Idiopathic” is a term we use when we think something is not secondary to any other disorder or condition. Often we make this diagnosis by default (e.g., we have not found any other explanation). It is important to carefully assess every patient, but sometimes “idiopathic” is the best dx.
A heart rate in the 50’s can be normal, especially while sleeping. Whether or not bradycardia is a concern depends on when it happens, how long it lasts, and if it causes symptoms. A cardiology workup can determine whether or not this is something to be concerned about.
It is hard to give a general answer to this as it depends on many factors. There are specific diets and medications that can help with gastroparesis and nausea/vomiting. Abdominal pain can be from POTS itself or from MCAS.
Many patients with ME/CSF (but not all) have POTS when tested for it. The symptoms of the 2 conditions overlap. There are many theories, but no one is really sure what causes ME/CFS or how best to diagnose it. If someone has POTS (with or without ME/CFS), treating the POTS and related conditions such as MCAS usually helps the most.
Neurocardiogenic syncope is fainting because heart rate and blood pressure drop at the same time. This is often seen in the setting of pain or someone seeing blood. However, it can occur randomly for unclear reasons. While some patients with POTS faint, most do not. To further complicate matters, some patients with POTS can experience Neurocardiogenic Syncope on occasion. In my experience, NCS is often an incorrect diagnosis given to someone with POTS or another autonomic disorder. Features of NCS can be triggered after someone is given nitroglycerin. Many cardiologists do this as part of tilt table testing to increase the chance of a test being abnormal. However, a significant percentage of normal, healthy people will show NCS and faint after being given nitroglycerin.
This is hard to do but largely depends on the types of activities that bring on the fatigue and how long it lasts. The bottom line is treating POTS as optimally as possible.
By seeing a doctor (cardiologist or neurologist) who specializes in these conditions. They should do a tilt table test.
No. Neurogenic Orthostatic Hypotension is a condition where your blood pressure decreases when you are standing. In POTS, blood pressures usually do not decrease. There is a term “Orthostatic Intolerance” that sometimes gets confused with Orthostatic Hypotension. “OrthostaticIintolerance” simply refers to any situation where someone does not tolerate being upright. It can happen with NOH, POTS, and a number of other conditions.
This is not what we “typically expect” but we see it in a number of patients. Sometimes it is part of POTS, but other testing should be done to look for MCAS, seizures, or other neurological issues that could be causing this.
Most commonly this is a diagnosed from in-office testing called autonomic testing or at least a tilt-table test.
POTS may come on after procedures and surgeries. So this is possible.
Determining if someone has POTS vs a different form of dysautonomia depends mainly on what happens with blood pressure during tilt. Measuring blood flow to the brain during tilt can help diagnose some patients where neither heart rate nor blood pressure change much during tilt.
Tilt table testing is generally the same. Cardiologists tend to keep patients tilted for longer, 30 minutes or more. Autonomic specialists tend to tilt for just 10 minutes. The information from the tilt table test that is most important is what heart and blood pressure do during tilt. This is available no matter who does the tilt table. While tilt table testing is usually the most informative test, there are tests of autonomic function that are separate from a tilt table. Cardiologists will typically just do the tilt table.
Atomoxetine could affect the results of the test.
People with POTS often feel short of breath, but their lungs are usually fine.
There can be many reasons for Inappropriate Sinus Tachycardia (IST). Sometimes it is a dysautonomia.
There are a number of potential treatments. These range from increased intake of water and salt, certain exercises, and a number of medications.
It is not clear if there are long-term effects. It certainly causes a lot of day-to-day problems. Most of our patients, when treated, do not seem to have lasting effects.
Coat Hanger pain is treated by addressing the underlying problem that is preventing sufficient blood flow. This could be POTS or another autonomic disorder. Treatments include increased salt/electrolyte intake, compression stockings, exercise, and medications.
Any condition that can prevent sufficient blood flow when standing can cause this. POTS and OH are the most common.
Not high BP by itself. However, some autonomic disorders can produce high blood pressures at times and low blood pressures at others.
Neck issues can resemble coat hanger pain. An evaluation by a physical therapist and provider is important, but sometimes it can be hard to be sure. Sometimes the response to treating POTS and OH gives the answer of whether the pain was coat hanger pain.
It may be pain from another reason. However, if it seems like coat hanger pain is present, then careful assessment for POTS or similar conditions is warranted.
Various headache conditions are common in people with POTS. So maybe. Occipital Neuralgia is not something we commonly see in POTS patients.
Mild cognitive impairment (MCI) involves damage to the brain and can be measured on cognitive tests. People with brain fog have more intermittent symptoms and do not show the same findings on cognitive testing (in fact, their cognitive tests are often normal despite the brain fog).