Managing Vertigo When You Have MS
Feel like the room is spinning while you're standing still? Dizziness and vertigo affect many people with multiple sclerosis, but there are strategies that can help.
There are days when Amanda Ellis Graham, of Salt Lake City, feels like the rug has been pulled out from under her. She compares the vertigo she lives with to walking on a trampoline.
Graham, who was diagnosed with multiple sclerosis (MS) when she was 18, combines daily medication and other approaches to help control her vertigo. Still, it has had a severe impact on her quality of life.
Graham says vertigo has been her most debilitating MS symptom. She no longer drives because her severe vertigo is unpredictable and scary.
“It feels like when you go through a fun house, and there are those moving floors and flashing lights," she says. "You feel like you’re going to throw up when it gets really intense." She often tries to focus on something that isn’t moving to “reset” her brain.
“People will ask, ‘Do you need to go lie down?’" Graham says. "It’s an understandable question, but lying down actually makes it worse." With her doctor’s help, she has come up with her own strategies for coping with vertigo, such as focusing on a stationary object and avoiding noise and bright lights to cut down on sensory overload.
What Causes Vertigo in MS
Symptoms arising from vestibular system dysfunction (or a disturbance in the body’s balance system) are observed in 49 to 59 percent of people with MS, according to research published in November 2020 in BMC Neurology. These symptoms may include vertigo, dizziness, and/or imbalance.
Dizziness is a common symptom of MS, and people with MS may feel off-balance or lightheaded. Vertigo — or the sensation that you or your surroundings are spinning — is much less common, according to the National Multiple Sclerosis Society (NMSS). Vertigo and dizziness in MS are due to lesions, or damaged areas, in the brain pathways that coordinate balance, notes the NMSS.
Research published in the Journal of Neurology suggests that when MS is more active — meaning new brain lesions are forming or old ones are getting bigger — vertigo is more often reported.
“What we found is that there are many parts of the brain responsible for producing dizziness," says John Pula, MD, a neuro-ophthalmologist at NorthShore University HealthSystem in the Chicago area and lead author of the Journal of Neurology study. "Acute vertigo can happen in MS and may be responsible for some of the symptoms and disability that happen in MS.”
Beyond a relationship between the brain lesions and vertigo, Dr. Pula says there are other reasons people with MS might experience more vertigo than others, including:
- Benign Paroxysmal Positional Vertigo This is a sensation caused by dislocation in your inner ear. Because falls and trauma may cause this, people with MS, who tend to fall more often, may be at greater risk.
- Changes in Vision Your sense of balance relies in part on your visual system. MS-related vision changes can also lead to a sensation of dizziness or vertigo even if you are standing or sitting still.
- Changes in Brain Structures If MS attacks the cerebellum, your balance can be affected.
Other conditions that can cause vertigo include benign tumors of the acoustic nerve, which connects the ear and the brain, and middle ear inflammation, according to the NMSS. But these conditions are not related to MS.
Because the possible causes and symptoms of vertigo vary, the treatments do as well. Work with your doctor to pinpoint the cause of your vertigo. When you see your doctor, try to be as specific as you can in describing what you are feeling.
One tip when talking with your doctor: If possible, stay away from the word "dizziness."
“It’s not that descriptive,” says vestibular rehabilitation specialist Helen Cohen, EdD, a professor of otolaryngology and associate director of the Center for Balance Disorders at the Baylor College of Medicine in Houston.
“I’ve had people come in and say they feel dizzy, but they really mean off-balance, while another person means lightheaded. People with vertigo typically feel that they are moving — it’s a sense of internal motion.”
“Be careful what you say to your doctor, because it’s your description that will put your doctor on the track to solving your problem,” stresses Dr. Cohen.
She points out that for most people, dizziness is not an emergency situation and can be addressed at your next doctor visit. But she advises going to the emergency room for acute vertigo if:
- You have sudden hearing loss.
- You have heart disease risk factors.
- You have other signs of a stroke, such as a sudden headache or loss of speech and motor coordination.
- You are also nauseous and vomiting.
- You have fallen or lost consciousness.
- You suspect an overdose or a negative interaction involving alcohol, drugs, or medication.
Coping With Vertigo
Vertigo can be scary, annoying, frustrating, and worrying. Experiment with various strategies to reduce vertigo:
- Review your medications. Medication can cause side effects such as lightheadedness and dizziness. Go over your medications with your doctor or pharmacist to make sure you’re taking them correctly and that there are no unwanted interactions.
- Get a total health check. Although vertigo and MS go hand in hand for some people, don't assume MS is the root cause. Stroke, infections, dehydration, low blood sugar, aging, and heart disease can all contribute to dizziness. If you’re experiencing dizziness, let your doctor know.
- Treat the vertigo. Based on your doctor’s evaluation, you might need additional medication temporarily or on a longer-term basis to treat the vertigo or its cause. Usually, vertigo symptoms respond to anti-motion-sickness drugs, according to the NMSS. For more severe cases, a short course of corticosteroids may be prescribed.
- Use assistive devices. Graham says it took her a while to accept that using a cane would be helpful to her. Now, looking back over the past few years, “I don’t know how many times I would have fallen over if I wasn’t using that cane," she says. A cane or walker can stabilize you when you’re feeling out of balance.
- Stay hydrated. Graham makes drinking enough fluids a priority and says this helps reduce her feelings of vertigo. It’s also good health advice in general — so drink up!
- Try acupressure. Graham gets some relief from touching key pressure points. Work with an acupuncturist or acupressure specialist to figure out which pressure points work best for you.
- Know your best times. If there’s a pattern to when you feel vertigo during your day, respect it. Complete tasks that require a good sense of balance, such as showering or cleaning your home, when you’re less dizzy.
- Consider vestibular rehabilitation. Work with a specialist in this area of rehab on specific exercises that can improve your balance and problems related to dizziness and vertigo.
- Exercise. Vertigo might make you want to stay still, but Cohen believes that being physically active can help reduce sensations of it in some people. Choose safe and appropriate activities.
The bottom line, Cohen says, is that you don’t have to accept living with vertigo forever. “It’s extremely rare to have vertigo that can’t be treated or helped,” she says.