Diagnosed with MdDS, PPPD or Vestibular Migraines? It Might Be Toxic Mold Illness.

If you haven’t read up on my personal toxic mold illness journey, be sure to catch yourself up here. If you are worried you might be suffering from toxic mold illness and want to take a symptom assessment, check out that article here.

During my initial search of finding a medical provider to figure out why my wife had gone from a healthy, energetic and vibrant career woman to a debilitated, fatigued and chronically ill 30-year-old with chronic dizziness and migraines, she received an alphabet soup of diagnosis. At first it was chronic migraines, which evolved into vestibular migraines. We trialed a variety of medications from Botox, physical therapy, multiple migraine medications to migraine supplements. Not even slight improvements were experienced.

The next specialist gave us a diagnosis of PPPD (read more about PPPD below) with a vestibular disorder. Vestibular therapy and vision therapy were prescribed, and a treatment plan followed for months. We did experience temporary improvements in my wife’s balance and dizziness with vestibular therapy, but they were short lived and symptoms flared back up shortly after with no continued improvements.

The final Neurologist concluded she was suffering with Mal Debarquement Syndrome (MdDS). A trial of antidepressants, anti-anxiety and then anti-seizure medications were trialed with no improvements. If anything, symptoms worsened. An interesting symptom for those suffering from toxic mold illness is an unusual and atypical response to medications. Mold toxins in the blood can decrease the body’s ability to breakdown and excrete medications appropriately by downregulating detoxification enzymes. There are also a variety of medications that are made from mold and mold byproducts due to their ability to suppress their immune system. Think about the antibiotic penicillin, derived from the mold penicillium, and how it was discovered from mold growing on a petri dish.

What is Mal Debarquement Syndrome (MdDS)?

Mal de Débarquement Syndrome (MdDS) is a rare neurological disorder where individuals feel a persistent sensation of rocking, swaying, or bobbing, usually after disembarking from a boat, plane, or other motion-based activity. Unlike typical motion sickness, this sensation does not resolve quickly but can last for weeks, months, or even years.

Key Points:

• Cause: Often triggered by prolonged exposure to passive motion (e.g., cruises, flights, long car rides).

• Symptoms: Chronic dizziness, imbalance, and a persistent feeling of motion, especially when stationary.

• Diagnosis: No specific test; diagnosed based on symptoms and history.

• Treatment: No definitive cure; treatments focus on vestibular rehabilitation, medications, or neuromodulation therapies.

Common Treatment Approaches

1. Vestibular Rehabilitation Therapy (VRT)

• Specialized physical therapy to help the brain adapt to the false motion perception.

• Often includes balance exercises and gaze stabilization techniques.

2. Neuromodulation Therapies

• Transcranial Magnetic Stimulation (TMS) or transcranial Direct Current Stimulation (tDCS) may help reset brain activity.

• Some patients find symptom relief through these non-invasive brain stimulation techniques.

3. Medications

• Benzodiazepines (e.g., clonazepam, diazepam) – Can temporarily reduce symptoms but are not a long-term solution.

• SSRIs/SNRIs (e.g., venlafaxine, sertraline) – May help regulate brain function and improve symptoms, especially if anxiety is a factor.

4. Lifestyle Modifications

• Avoiding triggers like prolonged screen time, visual overstimulation, or certain movements.

• Regular exercise and stress management techniques (yoga, meditation) can help.

5. Readaptation to Motion

• Some people find relief by briefly exposing themselves to motion again (e.g., short boat rides) and gradually reintroducing stability.

What is Persistent Postural-Perceptual Dizziness (PPPD)?

Persistent Postural-Perceptual Dizziness (PPPD) is a chronic vestibular disorder characterized by persistent dizziness and a sensation of unsteadiness, often triggered by motion, visual stimuli, or upright posture. Unlike vertigo, which involves spinning sensations, PPPD feels more like a constant rocking or imbalance.

Key Features of PPPD:

• Symptoms: Chronic dizziness, unsteadiness, and non-spinning vertigo lasting for at least three months.

• Triggers: Standing, walking, busy environments (e.g., supermarkets, scrolling on screens), or sudden head movements.

• Causes: Can develop after a vestibular disorder (e.g., vestibular neuritis, BPPV, migraines) or even psychological stress.

• Diagnosis: Based on clinical history; no definitive lab tests or imaging can confirm it.

Treatment Approaches:

1. Vestibular Rehabilitation Therapy (VRT) – Helps retrain the brain to process balance and motion signals more effectively.

2. Cognitive Behavioral Therapy (CBT) – Addresses anxiety or maladaptive thought patterns that can worsen symptoms.

3. Medications – SSRIs or SNRIs (like sertraline or venlafaxine) can help regulate brain function and reduce symptoms.

4. Lifestyle Adjustments – Reducing stress, engaging in regular physical activity, and limiting visual triggers.

PPPD is a functional disorder, meaning there’s no structural damage to the brain or inner ear, but it persists due to a misfiring balance system. Recovery varies, but with proper treatment, many people see improvement over time.

What is a Vestibular Migraine?

A vestibular migraine is a type of migraine that primarily affects the vestibular system, leading to dizziness, vertigo, and balance disturbances instead of—or in addition to—the typical migraine headache. It is one of the most common causes of recurrent vertigo.

Key Features of Vestibular Migraines:

• Symptoms:

• Episodes of vertigo (lasting minutes to hours, sometimes days)

• Imbalance or unsteadiness

• Motion sensitivity

• Nausea and light/sound sensitivity

• May or may not include a headache

• Triggers:

• Stress, lack of sleep, dehydration

• Hormonal changes

• Certain foods (chocolate, caffeine, alcohol, aged cheeses)

• Bright lights, strong smells, or visual overstimulation

• Diagnosis:

• No specific test; diagnosed based on symptoms and medical history

• Often ruled out from other vestibular disorders (e.g., Ménière’s disease, BPPV)

Treatment Approaches:

1. Lifestyle Modifications:

• Regular sleep, hydration, and stress management

• Avoiding dietary triggers

• Vestibular rehabilitation exercises if dizziness is chronic

2. Medications:

• Acute treatments: Triptans or NSAIDs for migraine pain

• Preventive options: Beta-blockers, calcium channel blockers, antidepressants (SSRIs/SNRIs), or anticonvulsants

3. Vestibular Therapy:

• Helps retrain the brain to process balance signals properly

4. Supplements:

• Magnesium, riboflavin (B2), and CoQ10 have been suggested to help reduce migraine frequency

Vestibular migraines can be debilitating but are manageable with the right combination of treatments.

Final Thoughts on MdDS, Vestibular Migraines and PPPD

Many can find relief of their chronic symptoms through the traditional medical interventions listed above. But, if you felt worse with treatment, have been on medication treatment for many, many months to years with no improvement, or continue to have set flare ups and setbacks in your recovery, consider the possibility of toxic mold causing your symptoms. Be aware, if you bring this up to your doctor, you will likely be ignored, told there is no such thing or even told there is nothing that can be done about mold illness. This is not true! I have lived it along with countless others.  

If you are located in the Austin, Tx area and are interested in having a free 20 min consultation regarding your chronic health issues you can contact us here. If you suspect toxic mold illness may be causing your health symptoms, we can help.