POTS (Postural Orthostatic Tachycardia Syndrome): When Your Blood Pressure and Pulse Go Haywire

As we discussed earlier, people with CFS, fibromyalgia, Lyme and long COVID have "tripped a circuit breaker" in the brain called the hypothalamus. This controls three main functions:

1. Sleep
2. Hormone balance
3. Autonomic function, including blood pressure and heart rate

Research has shown that all of these are going awry in long COVID. We’ve discussed treating the first two. Now let’s look at loss of blood pressure and pulse control. The current fashion is to call it POTS (Postural Orthostatic Tachycardia Syndrome), but it has traveled under many different names.

Do you find you sometimes get briefly lightheaded when you stand? Have problems with occasional racing heart? Get brain fog when you’ve been standing up for a while? All of these suggest POTS. And research shows that it is present in the majority of people with long COVID.

Another Poorly Understood Condition

The good news? In university centers, at least as the diagnosis of POTS is well accepted, almost no one is treating it like a psychological condition. Meanwhile, a good number of studies have shown this to be frequently found in long COVID.

The bad news? Most doctors don’t even think of the diagnosis of POTS and are not familiar with diagnosing and treating it. So, it’s something that you may need to bring up and guide your doctor about.

Fortunately, more doctors are recognizing that it is not necessary to do the tilt table test to make the diagnosis. The tilt table testing is unreliable, costs thousands of dollars (often not insurance covered) and often leaves people feeling awful for a few days. The two tests below, which you can do at home, would be my recommended way to go. And more and more experts are agreeing.

What’s Going On?

If you think about it, the human body is really just a big bag of water. Stand us vertically, and gravity sends our blood down to our legs. For most animals who spend their time horizontally on four legs, this is not a big problem. But to become an upright species, it’s something we had to address.

We did so in the autonomic nervous system. Think of this as having two components. The nervous system creates a balance between adrenaline and calming. It regulates numerous bodily functions, such as blood pressure, heart rate and its force of contraction, digestion, respiratory rate, urination, and even sexual arousal.

In many people with long COVID, the nervous system seems to get stuck on the adrenaline side. So you feel like things are racing and then get exhausted. Kind of like a car that’s in neutral while you press the gas pedal.

So it’s not surprising that you may not only feel your heart racing, but also pounding. Digestion may also be getting a bit funny. And your libido may not be so hot either.

All this is annoying. But another key problem occurs when you stand up, and your blood goes to your legs and stays there. Your heart tries to make up for this by beating faster. But when it can’t keep up, the blood flow to your brain goes down and you get brain foggy.

This is all aggravated by being dehydrated because of the hormonal problems. A drop in adrenal stress hormones (which the research has now demonstrated in long COVID as well as CFS and fibromyalgia) and deficiency of the hormone called antidiuretic hormone (ADH, or the“anti-peeing” hormone) can leave you depleted of both salt and water — as we mentioned earlier, “peeing like a fish and drinking like a racehorse.” So people need to increase their salt and water intake.

Sound familiar? The good news is that knowledge is power!

How to Make the Diagnosis

There are two simple tests you can do at home, and I would recommend doing both. If either one is positive, especially if your symptoms are suggestive, there are things you can do on your own. There are also things your doctor can help you with once you help them become aware of the diagnosis.

Historically, as noted above, the standard way to confirm this diagnosis was to undergo the tilt-table test. In this test, you are strapped to a table and held upright to see if you pass out. There is a growing school of thought that it doesn’t add much (except for expense and making you feel sick).

The simple quiz below was shown to be about as reliable as the tilt-table test in a study in the peer-reviewed journal Mayo Clinic Proceedings.

More good news? Treating with the S.H.I.N.E.® protocol can help not only CFS/FMS but POTS as well.

For those of you who would like very in-depth information on orthostatic intolerance, download this PDF document at “General Information Brochure on Orthostatic Intolerance and Its Treatment” by Johns Hopkins professor Peter Rowe (my favorite OI researcher).

Orthostatic Intolerance Quiz

Below is a quick quiz that has been shown in the Mayo Clinic Proceedings to be a good screening test for orthostatic intolerance.

Self-Report Orthostatic Grading Scale¹

Orthostatic symptoms include worsening dizziness, fatigue, racing heart, or brain fog when standing. Circle 0–4 below as best applies to you.

A. Frequency of orthostatic symptoms:

0. I never or rarely experience orthostatic symptoms when I stand up.
1. I sometimes experience orthostatic symptoms when I stand up.
2. I often experience orthostatic symptoms when I stand up.
3. I usually experience orthostatic symptoms when I stand up.
4. I always experience orthostatic symptoms when I stand up.

B. Severity of orthostatic symptoms:

0. I do not experience orthostatic symptoms when I stand up.
1. I experience mild orthostatic symptoms when I stand up.
2. I experience moderate orthostatic symptoms when I stand up and sometimes have to sit back down for relief.
3. I experience severe orthostatic symptoms when I stand up and frequently have to sit back down for relief.
4. I experience severe orthostatic symptoms when I stand up and regularly faint if I do not sit back down.

C. Conditions under which orthostatic symptoms occur:

0. I never or rarely experience orthostatic symptoms under any circumstances.
1. I sometimes experience orthostatic symptoms under certain conditions, such as prolonged standing, a meal, exertion (e.g., walking), or when exposed to heat (e.g., hot day, hot bath, hot shower).
2. I often experience orthostatic symptoms under certain conditions, such as prolonged standing, a meal, exertion (e.g., walking), or when exposed to heat (e.g., hot day, hot bath, hot shower).
3. I usually experience orthostatic symptoms under certain conditions, such as prolonged standing, a meal, exertion (e.g., walking), or when exposed to heat (e.g., hot day, hot bath, hot shower).
4. I always experience orthostatic symptoms when I stand up; the specific conditions do not matter.

D. Activities of daily living:

0. My orthostatic symptoms do not interfere with activities of daily living (e.g., work, chores, dressing, bathing).
1. My orthostatic symptoms mildly interfere with activities of daily living (e.g., work, chores, dressing, bathing).
2. My orthostatic symptoms moderately interfere with activities of daily living (e.g., work, chores, dressing, bathing).
3. My orthostatic symptoms severely interfere with activities of daily living (e.g., work, chores, dressing, bathing).
4. My orthostatic symptoms severely interfere with activities of daily living (e.g., work, chores, dressing, bathing). / I am bed or wheelchair bound because of my symptoms.

E. Standing time:

0. On most occasions, I can stand as long as necessary without experiencing orthostatic symptoms.
1. On most occasions, I can stand more than 15 minutes before experiencing orthostatic symptoms.
2. On most occasions, I can stand 5 to 14 minutes before experiencing orthostatic symptoms.
3. On most occasions, I can stand 1 to 4 minutes before experiencing orthostatic symptoms.
4. On most occasions, I can stand less than 1 minute before experiencing orthostatic symptoms.

_____ Total Score

Scores of nine or higher suggest orthostatic intolerance. In long COVID, a score of seven or higher is suggestive.

The Second Test: The 10-Minute Pulse Test

Minimize salt intake one day. The following day, simply lie down on your back quietly for 10 minutes and then check your pulse (and blood pressure if able). Then stand up and check your pulse again (and blood pressure) every two minutes for 10 minutes while standing in place (don’t walk around or lean on anything).

If you have CFS/FMS/Long COVID and your pulse rate goes up by 15 beats per minute any time during the 10 minutes while standing (relative to when you are lying flat), this is suggestive (to me) of orthostatic intolerance. If it goes up 30 bpm or more, it confirms the diagnosis of orthostatic intolerance. It is helpful to also check your blood pressure at the same time as the pulse if you can, but the pulse is most important.

Checking BP is more important if you have been sick with these illnesses for over five years, as the body may no longer be able to mount the pulse increase. I consider a drop of more than 10 points in the top BP number (the systolic BP) to be suggestive of orthostatic intolerance.

When the Dizziness Is Not (Only) POTS: Disequilibrium

Disequilibrium is another cause of dizziness in CFS and fibromyalgia. It is not to be confused with vertigo, which is when you feel like you’re actually spinning in a circle. Vertigo is suggestive of infectious triggers for the CFS/FMS. Disequilibrium is more what it feels like to be standing on the deck of a moving boat.

A simple home test for disequilibrium is called the Romberg Test.

The Romberg Test

The Romberg Test is very simple. Stand with your hands on your hips and close your eyes for 30 seconds. Alternatively, you can put your arms out from your shoulders in so that you’re forming a cross. This three-minute YouTube video can show you how to do this. Instead of treating this symptom, in most people the disequilibrium resolves over time by simply using the S.H.I.N.E.® protocol. In severe cases though, the antibiotic minocycline 100 mg a day for 6 weeks can help as can TMS (Transcranial Magnetic Stimulation). PEA (see below) may also have effects similar to the antibiotic.

Key Treatments for POTS

These simple treatments can markedly improve function and they can be combined as you find helpful. But except for the first five below you will need a prescription. It is reasonable to simply start with the first four, adding in prescriptions as needed when your doctor is on board:

1. Increase salt and water intake. In addition to drinking more water, people with this condition need to add salt, sometimes even occasionally putting sea salt crystals under their tongue. If you notice improvement, you will know that your body was craving salt. Salt restriction with this condition is a good way to crash and burn.
2. Wear compression socks. It is remarkable how much improvement many people will see by simply using medium pressure (20 to 30 mm) compression stockings. Preferably, use ones that go to at least mid-thigh, but if you can’t wear those, then knee-high ones can still help. You should wear them during the day when you are active (not when you are lying down for extended periods). Although inexpensive, these first two treatments are very helpful. Wearing something that constricts the abdomen, such as a corset or a girdle, may also be helpful. But it usually is not needed.
3. Improve adrenal function. This is a critical part of our holding onto salt and water. As discussed in earlier articles, some will benefit from prescription low-dose hydrocortisone (do not go over 20 milligrams daily, which is like 4 mg of prednisone). In addition, natural adrenal support with Adrenaplex® is very helpful for optimizing adrenal function.
4. PEA (Palmitoylethanolamide). This remarkable nutrient reverses microglial activation (brain inflammation), a core part of this entire process. It dramatically decreases pain and sensitivities along with helping the POTS. Using a special highly absorption form that includes the enzyme serratiopeptidase is critical, so I use the PEA Healthy Inflammation Response. Give it time though. Although it often works much more quickly, it takes three months to see the full effect. The dosing is 300 mg twice daily. For a more potent effect, I give 600 mg twice daily for one month, then 1,200 mg twice daily for two months to see the full effect. Then the dose can usually be lowered to 300 to 600 mg daily. I give it morning and night (basically when you brush your teeth) on an empty stomach.
5. Change diet. Some people find that a gluten- and milk-free diet is also helpful. These changes can dramatically help CFS/FMS and long Covid in general. A four to six week trial will tell you if this will help in your case

Medications for POTS that I Start with

1. Increase sympathetic/adrenaline tone. The medication midodrine (ProAmatine) can be helpful after six weeks of use; the usual dose is 2.5 to 10 milligrams twice daily (morning and early afternoon). People should not use the medication after 5:00 p.m. or when lying down, as it can drive blood pressure too high. Lower the dose or stop if it causes too much of a blood pressure increase (routinely going over 150/88) or shakiness. I will occasionally increase the dose to a maximum of 10 milligrams three times daily, with the last dose at 4:00 p.m. The blood pressure should be checked after a week or two on the medication to make sure it is not going over 150/88.
2. Desmopressin (DDAVP). This is an antidiuretic hormone or “anti-peeing” hormone. It is made in the hypothalamic pituitary area and is also commonly suppressed in long Covid and CFS/FMS. When this hormone is low, holding on to water is like trying to keep water in a bucket full of holes. Usually, I give one or two tablets (0.1 milligrams) in the morning, and give it six weeks to work. If people are waking up frequently during the night to urinate, I may also give one or two at bedtime to control this so they can sleep. With higher dosing, it can alter the salt balance in the body, so your physician may consider checking electrolyte levels every so often.          

   I also consider giving 0.1 milligrams of fludrocortisone (Florinef). This is a prescription synthetic adrenal hormone, which helps the body hold on to salt and water. Because of this, it can help in POTS. Although more helpful in those under twenty years old, it may also be helpful in those with a chronically racing heart rate.

   Both of these hormones can cause headaches in a small percentage of people by shifting fluid balances too quickly. If this happens, I stop them until the headaches pass, and then resume with just a quarter tablet a day. Then I slowly increase the dose as is comfortable. These two hormones can be used together and they can be synergistic.

3. Increase serotonin and dopamine. Fluoxetine (Prozac), sertraline (Zoloft), and dextroamphetamine-related medications (Dexedrine, Adderall, or Ritalin—do not go over 20 milligrams a day to avoid addiction) have all been shown to help POTS and autonomic dysfunction.

Other Helpful Treatments (Which I Rarely Need)

1. Many physicians use beta-blockers such as Propranolol (Inderal). These may be helpful, but unfortunately in long Covid and CFS/FMS, I find they are more likely to aggravate fatigue. They are, however, worth using if you feel better. If using with the ProAmatine, consider 25 milligrams of atenolol (Tenormin) a day instead of propranolol.
2. Ivabradine (Corlanor) is a selective sinus node blocker. Basically, it slows down the heart rate without triggering the fatigue of beta-blockers. Its main downside was that it is about $15 a pill. But it recently went generic (44 cents a day using GoodRx, and breaking the 5 mg pill in half). So it is an excellent option now. Of those who tolerated it, 44 percent found 5 milligrams a day decreased both heart rate and fatigue after six months, although the benefits were likely seen much more quickly. Lower doses of 2.5 milligrams once or twice a day usually worked better than higher doses. The main side effect was a transient brightening of vision. This is now an excellent medication to begin with.
3. Pyridostigmine (Mestinon) can help in refractory cases. Its main side effect is diarrhea, so I am more likely to try it in people who have constipation. It doesn’t help many people, but in a few very severely ill cases, it has been a life changer. I suspect this small group has antibodies to a brain chemical called acetylcholine triggering their CFS/FMS.

References:

¹Christine Schrezenmaier, Jade A. Gehrking, Stacy M. Hines, Phillip A. Low, et al., “Evaluation of Orthostatic Hypotension: Relationship of a New Self-Report Instrument to Laboratory-Based Measures,” Mayo Clinic Proceedings 80, no. 3 (March 2005): 330–334.