By Jana Eisenberg
Randy Atlas was experiencing dizziness so debilitating that he could neither work nor drive; he ended up in bed for eight months.
“I traveled to different cities, seeing neurologists who specialized in dizziness,” the Tonawanda resident recollects. “Each gave a different diagnosis.” Then he found treatment for his condition right here in Buffalo.
Atlans now runs a support group — dizzygroup.org — to help other people.
At one point, Atlas was experiencing dizziness so debilitating that he couldn’t work or drive; he ended up in bed for eight months.
He is among the millions of adults who experience dizziness and vestibular disorders.
The various causes and symptoms make these disorders difficult to diagnose and, as a result, they are not always treated properly.
The Vestibular Disorder Association says that patients see on average four or five doctors before being diagnosed. And even then, it’s not always correct.
This was Randy Atlas’ experience.
“I traveled to different cities, seeing neurologists who specialized in dizziness,” the Tonawanda resident recollects. “Each gave a different diagnosis. One of the most common disorders is benign paroxysmal positional vertigo (BPPV), which is related to the inner ear. And that was one diagnosis I was given. I was also told that I was imagining it, or that I was ‘malingering’; that I didn’t want to work…I would have given anything to work and drive again.
Randy Atlas was experiencing dizziness so debilitating that he could neither work nor drive; he ended up in bed for eight months. “I traveled to different cities, seeing neurologists who specialized in dizziness,” the Tonawanda resident says. “Each gave a different diagnosis.” Then he found treatment for his condition right here in Buffalo. Atlas now runs a support group — dizzygroup.org — to help other people.
“Finally, in 2014, Dr. Lixin Zhang, a neurologist and director of the Dent Institute’s Dizziness and Balance Center, suggested that my problem was more related to the brain, not ears. He prescribed a medication that is normally used for seizure patients,” adds Atlas. “After he and his colleague Dr. Capote explained it, it made sense.”
Patients have also found that physical therapy can work to recondition and retrain the brain — in the absence of medication or surgery to “fix it,” says physician Susan Bennett.
Bennett, who holds appointments in University at Buffalo’s department of neurology, rehabilitation medicine and communicative disorders, is active in the American Physical Therapy Association. She is also a physical therapist at Susan E. Bennett PT & Associates.
The first thing she does when meeting a new patient is a comprehensive examination to determine the cause of the dizziness. “The most important thing in diagnosing these disorders is listening to the patient and taking a really good patient history. Also, therapists need to know anatomy and pathology,” she attests.
“The most common type of dizziness is based in the inner ear — if someone is lying down and they roll over, they’ll experience a sudden burst of true room-spinning dizziness” she says. “It can be short-lasting, and be accompanied by nausea…”
“The second most common is ‘vestibular neuritis;’ it’s an infection of the cranial nerve VIII [vestibulocochlear], which affects balance,” says Bennett. “This can be a nemesis — it can come on suddenly, and patients can’t get comfortable. It can be present 24/7. Patients often have to try and stay as still as possible; sometimes they’ll think they’re having a stroke.”
“BPPV is positionally provoked,” adds Bennett. “Sometimes both vestibular and cochlear can be involved. The third most common disorder that we see is Meniere’s disease. That’s when the fluid — endolymph — that circulates through the vestibular canals and balance apparatus is blocked. The fluid accumulation increases pressure, which pushes on hair cells, which causes sudden attacks of disequilibrium.”
Randy Atlas found physical therapy helpful. “The goal it is to train your brain to get used to situations that make you dizzy,” he describes. “Eye and balance exercises are also helpful.”
Bennett describes this way: “We have balance retraining programs for peripheral neuropathy and vestibular neuritis — with peripheral, patients can’t tell where their feet are, and with vestibular, they can’t tell where their head is in space. It’s conceptual retraining, where people learn to use vision to override and compensate for dysfunction coming from elsewhere.”
Patients start out sitting, and making small, controlled head and eye motions. They progress to larger motions and more demanding postures, such as standing while holding on, standing with a wide base, standing with a smaller base, etc. “Every patient who follows the program responds, and has been able to get back to ‘quality of life’ and activity,” attests Bennett.
Atlas started a monthly support group [dizzygroup.org], so people — and friends or caregivers — can come together in an understanding environment.
“I decided to start the group as I was recovering,” says Atlas. “I wanted to see who else was going through similar situations. We share feelings and coping strategies, and get new information from guest speakers.
“We try to keep it positive, which is very important; we can also vent. People feel comfortable sharing things they may not be able to elsewhere. Family and friends may not understand. Having a dizziness problem can negatively affect your life and your family, like it did to me.”
“Walking is part of my physical therapy,” says Atlas. “It’s good to get out of the house, to feel more steadiness, focus in the distance. Feeling grounded is the best thing; knowing that the floor is not moving, that the room isn’t turning. Once you realize that, it helps. Now I can do more, play with my daughter, walk her to school and drive her home. I couldn’t dream of doing that before.”
“I wish we didn’t have to have a support group. But people still have these problems, and it helps convey that there’s hope,” says Atlas. “If I could improve from rock bottom, others can too.”
What’s Randy Atlas’ Diagnosis Again?
When we asked the Tonawanda resident to be specific about his diagnosis, it took him an email to explain his condition. Here’s what he says:
“I have been diagnosed with several conditions:
1) Persistent Postural —Perceptual Dizziness — with an anxiety component
2) Chronic Subjective Dizziness (very similar to the above)
3) Migraine-Associated Dizziness (a.k.a. Vestibular Migraine) — mine is without headaches, but with visual disturbances
The above are all brain-related / central nervous system conditions.
4) Cervicogenic dizziness (possibly).”