Living with POTS
POTS makes your heart race when you stand up. It is real, it is common, and it gets better with a steady daily plan.
From Dr. Kenny Civello, cardiologist and electrophysiologist
POTS stands for postural orthostatic tachycardia syndrome. When you stand, gravity pulls blood toward your legs and belly. Normally your blood vessels tighten to push it back up. In POTS that response is weak, so your heart speeds up to keep blood moving to your brain.
How we diagnose it
Heart rate rises 30 beats per minute or more within 10 minutes of standing. For ages 12 to 19 the number is 40. Blood pressure does not drop much. Symptoms have lasted 3 months or longer.
What it feels like
Racing heart, lightheadedness, fatigue, brain fog, shakiness, and trouble exercising. Symptoms are worse upright and better lying down.
What to expect
POTS is not life threatening. It can still limit daily life. Most people improve a lot with the plan on this page. It takes weeks to months, so stay with it.
Why did this start?
POTS often begins after a stress on the body. Common triggers:
- A viral illness such as mono, the flu, or COVID
- Surgery, injury, or a long stretch of bed rest
- Pregnancy
- Autoimmune conditions such as lupus or Sjögren's syndrome
It is more common in women ages 15 to 50. It is also more common in people with very flexible joints (hypermobility or Ehlers Danlos syndrome) and in people with mast cell problems. Often there is more than one cause.
Are there different types?
Doctors describe a few patterns. Many people have a mix.
- Neuropathic. Small nerves that tighten the blood vessels in the legs do not work well, so blood pools.
- Hyperadrenergic. The body releases too much adrenaline on standing. Shakiness and a pounding heart are common.
- Low blood volume. There is less blood in the system to begin with.
The daily basics below help all three.
Is my heart damaged?
No. In POTS the heart muscle and its electrical system are normal. The fast rate is a reaction to blood pooling below the heart. We check an ECG and sometimes an ultrasound or a monitor to make sure nothing else is going on.
The four daily basics
These do more than any pill. If you only do one part of this page, do this part every day.
Fluid
- Drink 16 ounces of water before you get out of bed.
- Carry a bottle and sip all day.
- Drink extra in the heat and before exercise.
Why
More fluid means more blood volume. More blood volume means less pooling and a slower heart rate on standing. A large glass of water can raise standing blood pressure within minutes.
Salt
- That is about 4,000 mg of sodium. We will set your personal goal.
- Salt your food freely. Choose salty snacks such as broth, pickles, olives, and salted nuts.
- Spread it through the day with fluid.
Why
Salt holds water in your bloodstream. Without it, the extra water you drink leaves through your kidneys. Salt and fluid work as a pair.
Compression
- Waist high stockings or compression leggings work best.
- An abdominal binder helps a lot and is easier to put on.
- Put them on before you get out of bed. Take them off to sleep.
Why
Most blood pools in the belly and thighs, not the calves. Knee high socks alone do little. Squeezing the belly and legs pushes blood back toward the heart.
Exercise
- Rowing, recumbent bike, or swimming to begin.
- Build up slowly over 3 months.
- See the full plan below.
Why
Training increases blood volume and makes the heart pump more with each beat. In studies, a 3 month program improved symptoms in most patients who finished it.
A high salt diet is wrong for people with high blood pressure, heart failure, or kidney disease. Do not raise your salt unless we have told you it is right for you.
Ways to get your sodium
Electrolyte mixes are a convenient way to take salt and fluid together. Pick a low sugar version. Amounts are approximate, so check the label.
| Source | Serving | Sodium |
|---|---|---|
| Table salt | 1/4 teaspoon | about 575 mg |
| Broth or bouillon | 1 cup | about 800 mg |
| Dill pickle | 1 large | about 800 mg |
| LMNT | 1 packet | 1,000 mg |
| Liquid I.V. | 1 packet | about 500 mg |
| Nuun Sport | 1 tablet | about 300 mg |
| Salt tablet | 1 gram tablet | about 390 mg |
What about vitamins and supplements?
No supplement has strong evidence as a POTS treatment. The ones worth checking are those where a true deficiency can cause symptoms.
- Ask us to test your ferritin (iron stores), vitamin B12, and vitamin D. Replace them only if you are low.
- Magnesium, CoQ10, vitamin C, and NAD infusions have no POTS data behind them. Save your money.
Habits that help
Stand up in stages
Sit on the edge of the bed for a minute before you stand. Pause again before you walk.
Squeeze when you feel symptoms
Cross your legs and tense your thighs and buttocks. Clench your fists. Do calf raises. Sit or lie down if it does not pass.
Don't stand still
Shift your weight and move your legs in lines. Use a stool in the kitchen and a chair in the shower.
Eat small meals
Four to six small meals instead of three large ones. Large or sugary meals pull blood to the gut and worsen symptoms.
Stay cool
Heat opens blood vessels. Take lukewarm showers. Skip hot tubs and saunas. Plan outdoor time for cooler hours.
Limit alcohol
Alcohol opens blood vessels and dries you out. Most people with POTS feel worse after drinking.
Test your caffeine
A small amount helps some people and makes others jittery. See what it does to you. Avoid energy drinks.
Raise the head of your bed
Put 4 to 6 inch blocks under the head of the bed frame. This helps your body hold on to fluid overnight.
The 10 minute stand test
This is a simple way to see how your heart rate responds to standing. Use a watch, a pulse oximeter, or count your pulse. It is not a diagnosis. Write the numbers down and bring them to your visit.
How to do it
- Have someone with you. Stand next to a bed or a wall.
- Lie flat and rest quietly for 5 to 10 minutes. Record your heart rate.
- Stand up and stay still. Do not talk, shift, or lean on anything.
- Record your heart rate at 2, 5, and 10 minutes.
- Stop and lie down right away if you feel like you may faint.
Enter your lying down heart rate and at least one standing heart rate.
If you have a blood pressure cuff, record your blood pressure lying down and at each standing time too. Morning tests show the biggest change.
The exercise plan
Exercise is the most effective long term treatment for POTS. It is also the hardest, because upright exercise brings on symptoms. The fix is to start where gravity is not working against you and move upright slowly.
Month 1Lying down or seated cardio
- Rowing machine, recumbent bike, or swimming.
- Start with 5 to 10 minutes, 3 days a week. Shorter is fine if that is what you can do.
- Add a few minutes each week.
- Pace: you can talk but not sing.
- Add leg and core strength work on the floor 2 days a week: bridges, leg lifts, side planks.
Month 2Build time and effort
- Work up to 30 minutes per session, 4 days a week.
- Stay with seated or lying down machines.
- Keep strength training twice a week. Seated weight machines are a good choice.
- Keep a log of minutes, heart rate, and how you felt.
Month 3Move upright
- Add an upright bike first. Then walking on a treadmill or outside.
- Swap one seated session a week for an upright one. Add more as you tolerate it.
- Goal: 30 to 45 minutes, 4 to 5 days a week, plus strength work twice a week.
- Jog only if walking feels easy.
- You may feel worse for the first 2 to 3 weeks. That is common and it passes.
- Drink 16 ounces of fluid with salt before each session.
- Cool down slowly. Do not stop and stand still.
- If you miss a week, drop back a step and rebuild. The gains fade if you stop, so plan to keep going after month 3.
Medicines
Medicines are added on top of the daily basics, not in place of them. No drug is FDA approved for POTS. We use medicines that are approved for other conditions and have been studied in POTS. The choice depends on your pattern of symptoms.
Medicines that slow the heart rate
- Low dose beta blocker such as propranolol. Small doses work better than large ones in POTS. Can cause fatigue.
- Ivabradine. Slows the heart without lowering blood pressure. Can cause brief bright spots in vision. Not for use in pregnancy.
Medicines that tighten blood vessels
- Midodrine. Taken during the day while you are upright. Do not take it within 4 hours of lying down. Can cause tingling of the scalp and goosebumps.
- Pyridostigmine. Boosts the nerve signal to the blood vessels. Can cause stomach cramps or loose stools.
Medicines that raise blood volume
- Fludrocortisone. Helps your kidneys hold on to salt and water. We check your potassium while you take it.
- Desmopressin. Lowers urine output. Used only now and then because it can lower blood sodium.
Medicines that can make POTS worse
Bring a list of everything you take, including supplements. Some medicines raise heart rate or lower blood volume. Examples include water pills, some antidepressants and ADHD medicines, decongestants, and some blood pressure drugs. Do not stop any medicine on your own. We will review the list together.
Tracking at home
Numbers help us see what is working. You do not need to watch them all day.
Watch or fitness band
Apple Watch, Garmin, Fitbit, and similar devices track heart rate all day. Look at trends across weeks, not single spikes.
Blood pressure cuff
Use an upper arm cuff. Check lying down and after 3 minutes of standing, once or twice a week or when we change a medicine.
Pulse oximeter
A cheap way to spot check heart rate. Oxygen levels are normal in POTS.
Symptom log
Note your fluid, salt, exercise, and how you felt each day. Patterns show up quickly.
What about the Lumia ear device?
Lumia is a small sensor worn in the ear that estimates blood flow to the head. Early research suggests its readings track with symptoms in some patients, even when heart rate looks normal. It is new and it is not needed to diagnose or treat POTS. Ask us if you are curious about it.
If checking your numbers makes you more anxious, check less. A weekly look is enough for most people.
When to call us
- Fainting, especially with an injury
- Fainting or near fainting during exercise
- A racing heart that starts while you are resting or lying down, or that starts and stops suddenly
- Symptoms that keep getting worse despite the daily basics
- Side effects from a medicine
Call 911 for chest pain, trouble breathing, or fainting without waking up quickly.
Other guides
Lowering your AFib riskEating for your heartSleeping wellLowering your blood pressureMy watch says I have AFibGetting ready for your ablationLiving with a pacemaker or ICDThis page is general education for my patients. It does not replace advice from your own doctor. Talk with us before you change your salt intake, start a supplement, or start an exercise program.