Get Help in New MexicoPOTS (Postural-Orthostatic Tachycardia Syndrome) (FAQ)
- What is POTS?
- How do you get POTS?
- What are the symptoms?
- How is it diagnosed?
- When can we expect symptoms to get better?
- Will anyone else in the family get POTS?
- What is the treatment?
- How will my family's life be changed?
- What should schools know about POTS?
- Why have I been told that POTS is not a real diagnosis?
- How do I find high-sodium foods that are healthy?
- Can my teen eat too much salt?
- What else do I need to know about POTS?
- Resources
What is POTS?
Postural orthostatic tachycardia syndrome (POTS) is a condition that develops mostly in adolescents and includes chronic fatigue, dizziness, increased heart rate upon standing, and often abdominal discomfort or other chronic pain. The symptoms of POTS are caused by problems with the autonomic nervous system (dysautonomia). The autonomic nervous system controls many of the body’s functions—heart rate, breathing, digestion, and other body processes. POTS is the most common type of dysautonomia.
How do you get POTS?
The onset of POTS symptoms may be triggered by an injury or viral illness like mononucleosis (aka Epstein-Barr virus) or COVID-19, but the cause of the problems with the autonomic nervous system is unknown.
What are the symptoms?
Typical symptoms of POTS include:
- Light-headedness or dizziness when standing that improves when lying down
- Tiredness, fatigue, lack of energy that lasts for 3 months or longer
- Dizziness and/or fainting when standing
- Nausea or other abdominal discomfort
- Poor temperature regulation that may lead to heat intolerance
- “Brain fog” – the feeling that they can’t think clearly or remember things
- Chronic pain
- Momentary loss of eyesight or blackouts
Some patients will also have anxiety or depression, which may be because of symptoms.
How is it diagnosed?
The diagnosis is based on the symptoms, history, and physical exam. A typical finding is finding an increase in the heart rate of 40 beats per minute or more when standing after having been lying down. No X-rays or blood tests that help with diagnosis. Diagnosis may be delayed, largely because POTS is not thought of as a cause of the symptoms.
When can we expect symptoms to get better?
Will anyone else in the family get POTS?
What is the treatment?
POTS is mainly managed with:
- Increasing fluid intake, aiming for 3-4 L per day.
- Increasing salt and other electrolyte intake, which makes the body hold the water in blood vessels. Aim for 3-4 grams of sodium per day.
- Compression pants or stockings and abdominal binders may help some patients.
- Exercise to rebuild strength and stamina – this is key to recovery. Doing this under the guidance of a physical therapist can enhance improvement.
- Cognitive Behavioral Therapy (CBT) – a form of counseling/therapy – is very important to help make the needed lifestyle changes. See Behavioral Therapies (see NM providers [17]) for providers.
- Medications may be helpful
for some people with POTS:
- Medications to help the body retain fluid and salt (corticosteroids)
- Medications to help control blood flow and heart rate
- Treatment for depression
and/or anxiety, if present, which may involve
- Counseling
- Medications like antidepressants
- Raising the bed at the head so the entire bed is on an incline can help.
How will my family's life be changed?
Adapting to your child’s fatigue, discomfort, and inability to participate actively in school, recreation, and family life can be hard. Learning how to support your child in taking in more fluids and salt and exercising despite fatigue is key. Working with their school and other activities to adapt expectations while encouraging progress takes time and energy.
What should schools know about POTS?
Schools play a key role in helping your teenager succeed despite a POTS diagnosis. Your child might need accommodations for POTS to help them get through school. Accommodations should always be individualized to the student’s specific issues. Each person is unique, but here are some typical accommodations that have been used to help students with POTS. A few examples include:- Allowing access to fluids and salty snacks throughout the day. Salt helps retain fluids and keep up blood volume and pressure.
- Give a permanent bathroom pass. Frequent urination and stomach issues often accompany POTS.
- Reduce extended periods of standing. Accommodations may be needed for the lunch line, fire drills, outside recess, etc.
- Consider allowing a portable fan and the removal of outer layers of a uniform as heat exacerbates symptoms. Similarly, allow extra layers when the room is cold.
- Allow the student always to have a phone. The student can get help immediately if lightheaded, dizzy, or had a fainting spell from the bathroom, hall, or school fields where an adult might not be present.
- Be flexible with assignments and deadlines since POTS patients suffer from brain fog and concentration issues.
- Note-taking may be difficult. Assign a buddy to take notes. Allow the student to tape the class, have the teacher give the student a copy of the notes, or use technology like podcasts to catch up.
- Symptoms can change in severity daily, leading to missing school frequently. There should be no limit on absences allowed due to medical illness.
- Prioritize core academics. Reducing workload allows the student to complete major assignments in a timely manner. There is a limited window when students with POTS are well enough to work.
- Allow participation in all school activities (but with accommodations as needed). Feeling connected is critical to their emotional and social development, especially while battling POTS.
Why have I been told that POTS is not a real diagnosis?
POTS is a recent diagnosis, formally identified in the 1990s. There is not yet much research about the condition. ” POTS is an invisible illness, with no specific tests to diagnose it. Because people with symptoms of POTS often otherwise look good, and many are female, it was common to dismiss their symptoms as being part of anxiety or “it’s just in your head.” However, this is changing rapidly as health care professionals gain awareness about POTS being a real diagnosis, and more research is being conducted.How do I find high-sodium foods that are healthy?
- Sprinkling salt on your favorite foods is a great way to increase salt intake.
- Try adding ¼ teaspoon of salt to sliced cucumbers, watermelon wedges, sliced apple or banana with peanut butter, scrambled or boiled eggs, popcorn, edamame, or kale chips.
- While water should be your number one drink, you can also choose salty drinks (such as sports drinks) to increase salt. Aim for over 100 oz. of fluids every day. Avoid caffeine.
- You could also enjoy salty snacks. Alternatively, take Salt Tablets. These can
be purchased over the counter. Below are some ideas for high-salt drinks,
snacks, and tablets.
- Fluids: Sport drinks (e.g., Gatorade, LMNT, Propel, NUMI Sport), V8 vegetable juice, chicken broth
- Salty snacks: Salted seeds and nuts, baked potato chips, pretzels, goldfish, cottage cheese, Cheez-It, pepperoni or jerky
- Salt tablets: Thermotabs(2 with each meal), Vitaaium (2 with each meal), SaltSticks (often better tolerated than traditional salt pills)
Can my teen eat too much salt?
Unless your child has been diagnosed with hypertension, don’t worry about too much salt intake. Most teenagers end up not getting enough salt. The recommended sodium intake in POTS is 3-4 grams per day which is around 2 teaspoons of table salt daily, although some experts recommend 8-10 grams of sodium which is about 4-5 teaspoons of salt.What else do I need to know about POTS?
Physical
activity plays a major role in recovery. Remind your child to pace themselves
and increase exercise endurance slowly, especially if your teen is very
athletic. Having high expectations for exercise initially can get in the way of
recovery. For a specific exercise plan, see the POTS Exercise Program (
1.4 MB).
Resources
Information & Support
Related Portal Content
Postural Orthostatic Tachycardia Syndrome (POTS)
Assessment and management information for the primary care
clinician caring for the child with postural orthostatic tachycardia
syndrome (POTS).
For Parents and Patients
Find a Doctor (Dysautonomia International)
Provides a list of doctors nationwide who treat POTS.
Standing Up to POTS
Research, advocacy, and support, including many podcasts, videos, and a teen support group.
POTS Exercise Program ( 1.4 MB)
This is an example of a specific exercise program for patients with POTS.
10 Facts Doctors Should Know About POTS
This list can help parents and doctors better understand POTS, including its symptoms and how it is diagnosed; Dysautonomia
International.
Services for Patients & Families in New Mexico (NM)
| Service Categories | # of providers* in: | NM | NW | Other states (3) (show) | | NV | RI | UT |
|---|---|---|---|---|---|---|---|---|
| Behavioral Therapies | 17 | 1 | 19 | 32 | 36 | |||
For services not listed above, browse our Services categories or search our database.
* number of provider listings may vary by how states categorize services, whether providers are listed by organization or individual, how services are organized in the state, and other factors; Nationwide (NW) providers are generally limited to web-based services, provider locator services, and organizations that serve children from across the nation.