Lately, my life has been revolving.

“Like a circle in a spiral, like a wheel within a wheel
Never ending or beginning on an ever spinning reel”

The world swirls around me every time I move my head or change position – from sitting to standing or lying down in bed. I roll over and the room spins. Get up and the room spins. Bend down and the room spins. Turn my head and the room spins.

“Like a snowball down a mountain, or a carnival balloon
Like a carousel that’s turning running rings around the moon”

I grab the furniture to steady me. Run my hands along the walls. Bang my way through doorways. Grip the handrail on the stairs.

My movements feel strangely uncoordinated. My stomach is upset. I don’t know when or where it will hit me – or even IF it will come again. A cross between an amusement ride and Russian roulette.

I can’t drive. Or go anywhere on my own. I’m not able to do the groceries, the laundry or any other household chores. I can’t play the piano, take pictures with my camera, go for walks with my husband or swim. And even reading is a challenge, when words are dancing across the page.

“Like a clock whose hands are sweeping past the minutes of its face
And the world is like an apple whirling silently in space”

I’ve had dizzy spells before, and they’ve stopped me momentarily. But I’ve never experienced this kind of chronic vertigo before. Nor did I appreciate how debilitating it can be. It not only limits every aspect of your daily life and makes you feel sick. It shakes your confidence in everything.

When you can no longer trust the ground beneath you, or believe that your surroundings are firmly anchored in place, you feel tentative, anxious and unsure. It’s like you’re walking on eggshells all the time, expecting something to break. Falling becomes a very real concern, not an intangible threat. This is the first time since being diagnosed with MS that I have felt unsafe. Vulnerable to injury. On high alert.

And the fear it breeds is more pervasive than that. As the spins begin to mercifully subside, I wonder: Will they come back? And if so, when? Is this seasick feeling that I’m left with my new normal? Will I ever feel solid again? And is this new symptom a sign that my MS is progressing? Am I transitioning to secondary-progressive MS?

These thoughts go round and round and round in my head on a never-ending loop.

“Like the circles that you find in the windmills of your mind.”

Some things to know about vertigo:

  • Many people with MS feel dizzy, light-headed or off-balance. But vertigo is an especially disconcerting form of dizziness that involves a sensation of movement in relation to one’s surroundings. It’s a whirling or spinning feeling.
  • It affects about 20 percent of people with MS.
  • It can be caused by damage to the vestibular system, which coordinates visual and spatial information to control our sense of balance. Lesions in the brain stem and cerebellum are particularly problematic.
  • It’s important to rule out causes other than MS before treatment, as vertigo can also result from infections, debris or inflammation in the inner ear, Meniere’s disease, strokes or tumors, head and neck injuries, migraines and medication side-effects.
  • Vertigo is sometimes accompanied by other symptoms, including visual disturbances, hearing loss or ringing in the ears, walking and standing difficulties, nausea and vomiting.
  • There are some drugs for treating vertigo. These include over-the-counter motion sickness medications, such as dimenhydrinate (Gravol, Dramamine); prescription drugs, such as ondansetron (Zofran) and meclizine (Bonine, Antivert); and corticosteroids.
  • Vestibular rehabilitation with a trained physical therapist may be helpful if the spinning is provoked by changes in body position.
  • Safety is a real concern with vertigo. The risk of injury is high. Don’t drive. Be extra careful on the stairs. Use a mobility aid, if necessary. Take your time moving around and changing positions. Turn on lights when it’s dark. Remove tripping hazards. And above all, SIT DOWN until the spinning sensation passes.

Related posts:

(With credit to Alan and Marilyn Bergman for the lyrics to “The Windmills of Your Mind.”)