Living with Orthostatic Intolerance (OI)

by | Oct 4, 2024 | BHC News, Long COVID, ME/CFS, Orthostatic Intolerance, Patient Education, Provider Education

Living with Orthostatic Intolerance (OI)
by Melanie Hoppers, MD
 

If you’ve ever felt like simple, everyday activities drain your energy, you’re not alone. Living with orthostatic intolerance (OI) can turn activities like standing in line, taking a shower, or even sitting for too long—into exhausting tasks. OI happens when your body struggles to regulate blood pressure and heart rate when changing positions, like moving from lying down to sitting or standing. 

At the Bateman Horne Center (BHC), we refer to “upright activity” as any time your feet are on the floor. For those with OI, managing how long you’re upright is crucial, because it can trigger uncomfortable and/or debilitating symptoms that make it harder to go about your day. 


 What is Orthostatic Intolerance? 

OI is especially common in patients with ME/CFS and Long COVID. And because so much of life requires being upright, managing OI can really improve how you feel and function day-to-day. 

Think about a bottle of soda—when you hold it upright, gravity pulls the liquid to the bottom. Something similar happens in your body when you stand up. Gravity causes blood to pool in your lower body.  When the body senses that there is less blood flow to the brain it tries to correct by releasing neurotransmitters such as epinephrine and norepinephrine. This is how everyone’s body reacts to standing. Healthy people respond appropriately, and blood flow returns to the brain normally. But for people with orthostatic intolerance (OI), the body doesn’t respond to these attempts by the body to correct itself. This leads to a variety of symptoms from lack of blood flow getting to the to the brain.   The body, like the soda bottle, will equalize the blood throughout the body once in a lying down position, thus returning blood flow to the brain and reducing symptoms.  


Common Warning Signs of OI 

So, what does OI feel like? The symptoms can vary, but some common “warning signals” include: 

  • Dizziness or Lightheadedness: That faint, unsteady feeling when you stand up or stay upright for too long.
  • Palpitations or Increased Heart Rate: You may feel your heart racing or feel like it is beating very hard. Fatigue & Heaviness: An overwhelming sense of exhaustion or heaviness in your limbs that often eases when you lie down. 
  • Nausea: A queasy feeling, sometimes accompanied by an upset stomach. 
  • Headache: Head pain that gets worse the longer you’re upright. 
  • Trembling or Shakiness: Feelings of internal vibrations or shaking. 
  • Visual Disturbances: Blurry or tunnel vision. 
  • Brain Fog: Difficulty concentrating, finding words, paying attention or remembering information.
  • Sweating: Unexpected, sudden sweating without any physical exertion. 
  • Fainting: in extreme cases, a brief loss of consciousness. 
  • Muscle Twitching: Involuntary muscle twitches or contractions (fasciculations).
  • Anxiety: Feeling like you are stuck in “flight or fight” or like you are having a panic attack. I have had many patients go to the emergency department only to be told they were “just” anxious.

How to Manage Orthostatic Intolerance 

The good news is that managing OI is possible with a combination of strategies to help extend your “upright time” and improve your daily quality of life. But before you try anything new—like supplements or increasing salt intake—it’s important to check with your healthcare team to make sure the changes are safe for you. 

Some common ways to manage OI include:  

  • Hydration and Salt Intake: Consuming  2-4 liters of water with 8-10 grams of salt can help expand your blood volume reducing symptoms. Drinking more water without increasing your salt intake will not be effective and your kidneys will keep you running to the bathroom.
  • Compression Garments: Compression stockings, abdominal binders, or compression boots can help improve circulation by assisting your muscles to return blood to the blood vessels. These garments can be found at most medical supply stores or pharmacies.  High waisted full-length compression is best.   
  • Medications: Certain medications can help increase blood volume or improve circulation, which can make a big difference in how you feel.  Medicines for OI often work better when you are consuming adequate water and salt. 
  • Physical Counter-Maneuvers:  Simple actions like crossing your legs, clenching your fists, or tightening your thigh and glute muscles can sometimes help counteract the effects of gravity. But be cautious—these moves use energy and could trigger post-exertional malaise (PEM) in some people. PEM will make your symptoms of OI worse and difficult to manage. Remember to pace and find ways to conserve your energy.
     

Supporting People with ME/CFS, Long COVID, and OI 

Understanding OI is so important for those living with ME/CFS, Long COVID, and other infection-related conditions. At BHC, we’re committed to educating both patients and healthcare providers about the profound impact OI can have on daily life. 


Looking for More Information?

BHC created a guide on managing OI, which includes pharmacological and non-pharmacological options. You can find it here. 

Or view this video: Basics for Patients: Orthostatic Intolerance, part of our series of informational videos.