EDS, POTS and Brain Fog: Is this normal?

Estimated reading time: 5 minutesI wasn’t aware of the term brain fog until I started working with the chronic illness community 17 years ago. 

When I first learned about it, I was relieved that I now had a name for what I’d experienced for most of my life.

I’d lived with undiagnosed hypermobile Ehlers-Danlos Syndrome(hEDS), POTS, CFS, and MCAS for so long that I just assumed everyone experienced the same symptoms as me. That this was how everyone’s brains functioned.

I certainly didn’t know that these conditions could be causing or contributing to my brain fog.

Symptoms that I would characterize as brain fog include struggling to find the right words, trouble concentrating, mental fatigue, and feeling a sense of what I called “jet lag”.

We are all different, and brain fog can impact people in different ways. It is commonly discussed in The Zebra Club community, so please know many people share this experience.

Let’s explore it in more detail.

What is brain fog?

While not an official medical term, it is a term commonly used by doctors and patients with chronic conditions to describe various forms of cognitive impairment (1).

There are some hypotheses, but the cause of brain fog is not fully known.

The most frequently used descriptions for brain fog

A survey was done with young people with Postural Orthostatic Tachycardia Syndrome (POTS) with the goal of identifying common descriptors for the term brain fog (1). The most commonly used were:

• Forgetful
• Difficulty thinking
• Difficulty Focusing
• Cloudy
• Difficulty finding the right words or communicating

I’ve had movement therapy clients describe it as their brain being disconnected or offline.

Participants in another research survey on people with POTS described it as blanking out, losing thoughts, experiencing confusion, or other terms like “walking through mud” or “cloudy thinking (2).”

Importantly, in that first study we cited, the researchers concluded that based on the descriptions, the fog is related to impaired cognition and performance of cognitive tasks, and NOT the descriptions usually associated with fatigue, anxiety, or depression (1).

How would you describe it? Let me know in the comments below.

EDS & Brain fog

EDS has so many symptoms, but chronic pain, poor sleep, proprioceptive challenges, and fatigue all seem to contribute to that brain fog feeling.

In one small study on patients with hEDS and hypermobility spectrum disorder (HSD), 36% reported experiencing it often, while 33% reported it sometimes, another 20% said rarely, and only 10% said they never experienced it (3).

It is so common in our community.

Living in a variable, unpredictable body demands a huge cognitive effort, and I’m not sure this is fully understood by people outside of the chronic illness world.

Many commonly co-occurring conditions alongside EDS are often associated with or potentially contributing to brain fog

These can include:

• Craniocervical or upper cervical instability in the neck (4).
• Dysautonomia (POTS and OH) – see below
• Mast Cell Activation Syndrome (MCAS) – See below
• Long-covid (5)
• Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) (6)
• Sleep disorders (7)
• Chronic pain (2)

Many of us experience different combinations of these conditions.

If you are on this spectrum and are experiencing brain fog, please know that you are not alone.

The role of POTS in Brain Fog

When I’m in a POTS flare, I definitely see my brain fog increase.

One theory is that with the autonomic nervous system unable to regulate blood flow properly, the amount of blood that reaches the brain (cerebral blood flow) may be reduced (2).

Research studies have shown that there are clear cognitive impairments in upright postures in people with POTS (8).

But others have shown that people with POTS still have cognitive issues when they are sitting or semi-recumbent and not experiencing orthostatic challenge. So, it may not be simply blood pooling but another component of the condition (7, 8)

Regardless of the cause, cognitive impairments in POTS can exist from mild to significantly impacting schooling, work, and life (7).

This is not laziness or poor work attitude; it is a physiological response. 

Triggers commonly reported for brain fog in POTS (1):

• Physical fatigue
• Lack of sleep
• Prolonged standing
• Dehydration

Don’t forget MCAS!

Brain fog is often mentioned as a symptom of Mast Cell Activation Syndrome, a condition often seen alongside EDS and POTS.

One theory involves the mast cells in the brain interacting with cells called microglia. Activation of these mast cells leads to mediator release that could lead to neuroinflammation and the cognitive dysfunction seen in MCAS (5).

This is hypothesized to be similar to what happens in Long-COVID, but again, research has not yet fully explained these mechanisms(5).

Daily survival strategies for Brain fog

There are some tools to try to reduce and manage brain fog. Again, everyone is different, so try and see what works for you.

These are not medical tips, and addressing treatment of any co-occurring conditions with your medical team may also help.

• Address Movement and Blood Flow

  • Gentle supine or seated movements to stimulate circulation without pushing and forcing.
  • Breathwork to calm the nervous system and support oxygen delivery. This must be introduced gently – too much oxygen all at once can also cause dizziness.
  • Legs up a wall to reset and help blood flow. I like to rest here and breathe.
  • Calf pumps, heel raises, and walking on the spot can all help promote blood flow. These are called counterpressure maneuvers.
  • Supine arm circles to improve flow – easily done in bed
  • Vagus nerve stimulation exercises can be helpful for some people
  • It may help to stay supine or seated if being upright worsens your brain fog. We can still achieve a lot in this position. Conditioning of leg muscles and other strategies may help this.
  • If you are seated for a long time, getting up and moving around for short periods may help with blood pooling.
  • Compression socks and garments can also be helpful. Research has shown full-length abdominal & leg compression is the most effective in reducing symptoms in a head-up tilt table. Other levels of compression do help as well, but just may not be as effective (Bourne)

• Hydration

  • One small study found a clear benefit in POTS patients by drinking 500ml of water within 5 minutes can help reduce cognitive symptoms in an upright tilt test (8).
  • Check out our Electrolyte Guide by Nutritionist Lorna Ryan for more information on salt, electrolytes, and hydration.

• Take a break

  • Learn to listen to your body and take a break when you need to. I used to push through and ignore that creeping feeling of brain fog coming on. It made my recovery time even longer. Now I stop and go do something totally different.
  • Small steps – break a big task into chunks so you don’t overwhelm the system
  • I always prefer doing my heavy cognitive work in the morning when I am fresher. You may find it easier in the afternoon. Find what time of day works for you and schedule your day around that.

• Address your environment

  • Noise-cancelling headphones can help prevent sensory overload
  • Quiet downtime away from electronics and screens can help with overstimulation
  • Cooling – heat can make brain fog worse. Check out our guide on Heat Intolerance for some ideas to manage this.

What strategies have you found to help with brain fog? Let me know in the comments! 

Members of The Zebra Club can find a presentation by Emily Rich, OT, PhD, a POTS researcher on Nonpharmacological Interventions for POTS in the presentations folder in the resources section. This presentation includes more strategies for addressing POTS symptoms like brain fog.

A Self-Compassion Meditation

Self-compassion is a great tool to have if you tend to be hard on yourself when experiencing brain fog. In this video I explain a little about this practice and then lead you in a meditation.

FAQ

Can POTS cause brain fog?

Yes, POTS is often associated with brain fog. Research has clearly demonstrated that it is associated with upright postures in POTS patients, but some have symptoms sitting and lying down as well. The cause is not fully known.

Can EDS cause brain fog?

Many people with EDS report brain fog. The cause is not fully known and could be due to co-ocurring conditions like POTS, MCAS, CCI/UCI, and more. More research is needed.

What flares or triggers commonly worsen brain fog?

There are a number of common ones triggers for brain fog. These can include overexertion, dehydration, sustained upright postures (especially in POTS), lack of sleep, and more.

Jeannie Di Bon

Jeannie Di Bon is a movement therapist, educator and author specializing in hypermobility, Ehlers-Danlos Syndrome and chronic pain. She is the founder of The Zebra Club app and the creator of the Integral Movement Method.