Dizziness on standing & POTS

What is orthostatic intolerance?

Orthostatic intolerance (OI) means symptoms get worse when you’re upright (standing, or even sitting) and improve when you lie down. It’s the most commonly missed treatable part of ME/CFS.

Symptoms can include:

• lightheadedness or dizziness
• brain fog that gets worse when upright
• a racing or pounding heart
• nausea
• blurred or greying vision
• shakiness, sweating
• blotchy, purple or mottled legs when standing
• needing to sit, crouch or lie down, or fainting

POTS (postural orthostatic tachycardia syndrome) is one type: the heart rate rises by 30 or more beats per minute within 10 minutes of standing, without a big drop in blood pressure.

The home “lean test” (NASA 10-minute lean test)

This test was developed by NASA and adapted for ME/CFS by the Bateman Horne Center; in a study of 150 patients, at least 5 minutes of standing was needed to reveal the abnormal responses.^1,2 You can do a version of this at home. Do it with someone else there in case you feel faint, and stop if you feel unwell.

1. Do it in the morning, before caffeine.
2. Lie flat for 10 minutes. Record your heart rate, and blood pressure if you have a cuff.
3. Stand and lean your upper back against a wall with your heels about 15 cm out from the wall. Try not to move.
4. Record your heart rate every minute for 10 minutes (and blood pressure at 2, 5 and 10 minutes if you can). Note any symptoms: lightheadedness, nausea, vision changes, mottled legs.
5. A positive result is a sustained heart rate rise of 30+ bpm, or not being able to finish the 10 minutes.
6. Write the numbers down and take them to your GP.

Managing it

Talk to your doctor before starting any of these. Salt in particular isn’t right for everyone.

Notes on medications:

• Pyridostigmine has ME/CFS-specific data: a placebo-controlled trial found it improved how the heart and circulation respond to exercise. RCT⁶ See Medications.
• Ivabradine lowered heart rate but did not improve symptoms in the RECOVER-AUTONOMIC Long COVID trial (181 patients). RCT Adjacent field⁷

Choosing compression garments

Why waist-high? Much of the problem in POTS is blood pooling in the abdomen and pelvis. Knee- or thigh-high stockings don’t address that, and the trial above found abdominal compression did most of the work.⁵

Tips:

• Comfort: waist-high garments can be very tight in the groin. The medical term to search for is “open crotch”. It’s a standard medical option.
• Alternative: thigh-highs (some attach at the waist or have silicone top bands) avoid groin pressure but give no abdominal compression. They can be paired with an abdominal binder.
• Sizing: measure in the morning before any swelling: ankle, calf, upper thigh, and floor-to-buttock length. Or get fitted at a pharmacy or compression clinic.
• Putting them on: they snag easily. Rubber donning gloves help a lot.
• Brands: Juzo, Jobst, Sigvaris and Bauerfeind are all medical-grade. Australian stockists include Compression Stockings Online, Bodyment and BrightLife Direct.
• Cost (Australia): with private health extras cover, a prescription or fitting from a physio or GP may make them claimable.

Why this matters

Reduced blood flow to the brain when upright is closely linked to brain fog. For many people, treating OI is one of the few things that makes a clear, practical difference.