Yvonne Linton

No matter how difficult, always find a way to keep moving--if only your toes, then wiggle those!

Age: 56

Diagnosis: Persistent Postural Perceptual Dizziness (PPPD)

When Balance Goes Topsy-Turvy

The tipping point for seeking help for my balance was toppling over on my bike while waiting at a stoplight. As someone who enjoyed training for triathlon events, this could prove hazardous. I was also becoming increasingly dizzy in choppy open water, while backing up in a car, or sitting in heavy traffic with cars inching by- especially with extra stressors like windshield wipers swishing back and forth. Watching a train roar past made my head spin, or strolling in heavy crowds.

The Dizziness Merry-Go-Round

Vestibular dysfunction can be worsened by stress but is not solely caused by stress.
Feeling dizzy and failing to process sounds and sights correctly can be stress inducing in itself! Panic attacks can bring on dizziness– or be caused by them. Dental visits, barometric pressure from weather changes, and pain can also be triggers, I discovered. And having a sensitive nervous system can also tax the sympathetic nervous system. (I am in remission from Complex Regional pain syndrome, a nervous system disorder formerly known as Reflex Sympathetic Dystrophy.)

My husband studied the vestibular system at NASA to see why certain astronauts would become impaired in space. But you do not have to float in space to feel flighty. Due to long-term undiagnosed vestibular issues, I frequently felt lightheaded and loopy. I blamed it on seasonal allergies, sinus issues, or subpar sleep. (People with vestibular issues frequently have sleep disorders, like I do.) The constant stress on the nervous system of trying to orient one body’s in space also impacts attention.

Cognitive Aspects of Vestibular Dysfunction

Health professionals gave me many labels over the years from ADD to OCD. High school classmates nicknamed me Space Case. Later in life, an ENT doctor dismissed my concerns and handed me the name of a psychiatrist.
Due to my rosy-cheeked complexion one day, and a wobble in my gait, a well-meaning stranger asked me if I was a friend of Bill’s. This apparently is code for finding fellow Alcohol Anonymous members— Bill Wilson founded AA! (I also happened to be wearing a gold camel around my neck, from my time spent living in Saudi Arabia). In reality, I get tipsy over a whiff of alcohol. All these labels affected my psyche, causing a deep sense of hurt and shame. I began to doubt my abilities, regardless of my many significant achievements.

Despite obvious intelligence, the deficiencies in my brain at times frustrated me—and likely others—to no end. Upon seeing a doctor for menopausal challenges and brain fog, she reported afterwards, “Patient vented in a random stream of consciousness.” Ouch! I started to guard my feelings more, for fear of getting hurt. My Internet trail eventually led me to a VeDA lecture of psychotherapist Kenneth Erickson, M.D. While reading his article on the cognitive aspects of vestibular dysfunction, I began to weep, as I related so well to it. People with vestibular deficiencies—like those with ADD/ADHD—can give the impression they are poor listeners, slow verbal processors, or plain anxious. This is especially true when meeting new people, which can hyper-stimulate the nervous system. Conversations often lack balance too, not always having linear thought patterns or set stopping points when ending one topic and starting another.

Know When You Need Help

After years of trying to get fix my brain, the tumble from my bike finally prompted me to seek proper help once and for all. First I had to assess for injuries…I staggered to the nearby clinic and an assistant attempted to take me to the X-Ray department in a wheelchair. That only made me woozier. Taking a pill for every problem was not cutting it anymore. I needed to retrain my brain before my luck ran out.
First I needed answers. Most doctors are well aware of the major senses in the body like hearing and vision, smell and touch. But they are less familiar with the complexities of the vestibular system, and the important role it has in tracking the body’s positioning in space (proprioception), which helps us recover when we start to fall. Most of us give vestibular dysfunction little thought until our body sends signals. We might bend over and see stars from standing up too fast, feel tipsy in high seas, or get hopelessly dizzy from spinning on a merry-go-round.

Vestibular Dysfunction Versus Motion Sensitivity

With vestibular imbalance, the sensory input received from the eyes, muscles and joints, conflicts with one another. We may feel like we are still moving in a boat long after we have reached dry land. Or feel discombobulated in a parking lot when the car next to us starts backing up just as we are reversing. Or, we may sense we are moving even if we are not, and get dizzy from swarms of shoppers on a Saturday at Costco. (This was one of the exercises my vestibular doctor prescribed!)
Feeling off balance can come with navigating challenging surfaces like slippery shower stalls, but can also result from reaching up or looking down and losing equilibrium. Balance deficiencies can occur from the natural aging process, from improper neural development early on in life, and from improper biomechanics. Medication, disease, viral infections, concussion and pain or trauma can all affect the vestibular system as well. A minor car accident or whiplash can cause it too.

Tests For Vestibular Issues

Assessing vestibular dysfunction includes more than checking for loose crystals in the ears, signs of a virus, or faulty postural mechanics. Vestibular diagnostics cover a wide variety of tests to assess the balance portion of the auditory and visual systems. Practitioners measure physiologic responses in the ears and eyes. A common test is the Computerized Dynamic Postural Topography Tests (CDP), which tests how the vision, proprioception, and vestibular systems each function and how they work together.

Tests include positioning the head and body in certain ways, and measuring a person’s ability to maintain balance in response to various stimuli. At Stanford University Ear Clinic, an Otolaryngologist and Neurologist tested me for involuntary or rapid eye movements with a VNG test. These movements, known as nystagmus (which I had), affect depth perception, balance and coordination. I was also strapped in a harness to an open-ended machine that resembled an airport scanner. While standing on a platform, I was bombarded with visual stimuli to test how my body would react. I pitched forward. The movement of the floor did not cause me to stumble; it moved up to catch my fall. I was diagnosed with Vestibular Migraines, also known as Migraine Associated Vertigo (MAV), and Persistent Postural-Perceptual Dizziness (PPPD).

An audiologist also performed tests for check fluid and pressure in the ears, and to measure how the inner ears responded to sound stimuli. He also looked for abnormalities in the auditory pathway from the external ear to the top of the brain. But the primary focus was to assess the ability of the auditory system’s ability to maintain balance. In a subsequent test, I was strapped into a tilting table to check my heart rate variability changes (followed up by a deep breathing heart rate variability test). It showed I had very low heart rate variability, a sign of a stressed nervous system. I now pay more attention to low heart rate training zones while working out and I take regular rest breaks. And I give myself more compassion and grace.

Holistic Treatments

A functional neurologist at the Norcal Brain Center in San Jose, CA was the first to treat my vestibular dysfunction. Dr. Tran takes a multi-faceted approach to diagnose and treat balance problems. “Not only do we have to look at the triggers, but we need to have perfect recalibration of the vestibular system and cerebellum. Our approach includes specific head and eye positioning maneuvers to sync the information coming from the environment with what is being processed in the brain.” In other words, the brain needs to be retrained so that routine movements and triggers are no longer disorienting.

The first major step towards treatment was to improve the gut issues and to determine food sensitivities through food elimination testing. Initially, I thought my chronic congestion was causing the headaches, but the neurologist concluded that migraines and inflammation was likely causing the congestion. And I was prescribed heavy doses of exercise. My kind of medicine! I now rarely take anything for headaches. (Note, migraines can also appear without head pain, cause vision and hearing changes, and contribute to lightheadedness). I was also urged to drink more water to support the brain and nervous system, to eat frequent small meals and stick to a clean Mediterranean style diet with protein.

Balance and Attention

I did many exercises to improve balance and hand-eye coordination and to strengthen attention. Attention and focus issues often accompany balance problems, as the body is working hard already just to stay upright. My eyes grew better accustomed to tracking movement. (It is not just an eye issue; it is how the brain processes what it sees.) I practiced moving my eyes to track images, lines or dots, without moving my head. Over time I was able to focus, without the images swimming or becoming blurry.

Other exercises involved double and triple tasking memory tests to assess auditory and visual attention. Gradually my brain was able to handle increased demands without feeling dizzy.

Vestibular Rehabilitation Therapy

I also did vestibular rehabilitation exercises with a physical therapist. Walking in a straight line (like a drunk test), standing on uneven surfaces, and looking at busy images scrolling by on paper or a computer screen were some of the exercises. Lots of one-legged balance exercises helped me improve the initial stumbling. Gait stability with static and dynamic balance exercises helped reduce joint pain and running injuries.

Just as allergy sufferers are continually exposed to allergy shots with gradually higher dosages of allergens, those with balance issues are exposed to repeated challenges of increasing complexity. At first, the testing brought on symptoms and some were given while I was lying down. But I quickly improved, from standing on a flat surface and looking straight ahead, then up and down and to each side. The doctor measured the amount of body sway I had. I progressed to standing with closed eyes on a flat surface, then on a moving disc. Then I moved up to balancing with my eyes closed, on one leg or while standing on a cushioned surface. The goal is see what triggers the imbalance and desensitize people to motion stimuli by gradually increase the demands on the nervous system.

Balance Therapy Benefits

Like many people with vestibular issues, I thought the unsteadiness I experienced was normal; I did not know any better anymore as I had learned to compensate. I tolerated symptoms and found ways to cope. Vestibular therapy also helped my spatial memory, so I no longer constantly lose track of where I set things down. Keeping up with regular balance exercises has improved my proprioception, as I no longer perpetually tilt forward. (Some physical therapists thought this postural tendency was just due to sloppy habits.)

With keeping up balance exercises, my brain does not have to work so hard, so I tire less quickly. Basic executive tasks, daily chores, and sustained reading efforts are less taxing. People always thought I had endless energy, when in fact I often exercised to feel awake or to clear my head. I am now less prone to falling asleep in inappropriate places, like my hot tub (I even fell nodded off on the back of a motorcycle once).
Finding a New Normal

It was liberating to learn that my fatigue and spaciness was not from a psychiatric disorder but a neurological one, and that the general anxiety and restlessness was not a sign of emotional weakness, but a compromised nervous system.
With vestibular problems, as with many complex health issues, we might settle for feeling out of synch. Or we are not fortunate to find someone to offer sustainable solutions. As with my recovery from a rare pain disorder, it takes stubborn determination and advocacy to keep seeking help. But the key is to keep searching for a compassionate doctor who treats the whole person, and does not settle for patients feeling less than their best.

Learning to Say No

When piling endless demands on bulging schedules and overtaxed nervous systems, it is easy to skimp on the regular rest and recovery time our brains all need. The best gift, I have learned, is to grant myself permission to slow down, to become more mindful, and to find more grace in each moment. Once I finally learned what calm and relaxation felt like, I learned to make more thoughtful decisions and to set boundaries. And I freed myself from the feeling of having to achieve in order to prove competency or worth.

I did pass one final test of the nervous system- competing in a half ironman triathlon with about 2000 participants, an event that involves swimming 1.2 miles, biking 56 miles and running 13.1 miles. I gave myself permission to slow down and walk on occasion, and I considered it a victory just to reach the starting line. Sometimes being successful means redefining our idea of success!