Category: case_studies


A family affair

One night a few weeks ago, my spouse awoke at 2:38 a.m. with vertigo. They tried to get up to go to the bathroom, felt the room spinning, and immediately lay back down flat on the bed, their hand scrabbling under the covers to grip my arm. Thus awakened, I asked questions to determine what was going on and then offered advice based on my many months with vertigo. What was frightening to my spouse was old-hat and not at all alarming to me, so I could offer some calming words.

  • I had them put their feet flat on the mattress as they lay there. This provides reliable data for the vestibular system and helps promote stability.
  • They told me that the spinning died down after a few minutes, and I reminded them that the same thing would happen with the spinning they experienced when they sat up. I encouraged them to sit up and then hang in there while the spinning subsided. (First I got a big bowl in case it was needed for nausea!)
  • After they sat up, I held their hand and helped them scoot back so their back was against the wall and then had them bend their knees so that their feet were once again flat on the mattress. This position has been very helpful for me when I am trying to help my body know where it is in space and the data from my eyes is unreliable.
  • I coached them as they got out of bed and moved carefully to the bathroom, suggesting that they put their hands on the door jambs and walls and that they not bend over.
  • I held their hand as they eased back into bed and waited for the spinning to stop.

In the morning, they felt better but not completely well, so I urged caution while exercising and while driving. I have found that if I modify my usual 30-minute exercise routine to accommodate any unsteadiness I feel, I usually feel close to normal by the end of it. Going through the motions and moving my body in a variety of ways seems to help recalibrate my vestibular system.

My spouse said they gained a new appreciation for what I went through during my many months with vertigo. They couldn’t imagine feeling “that way” for so long. Thankfully, their vertigo cleared up by the end of the day without treatment. Whew.

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My swimming hero!

In April 2014, Betsy Stengel got back into the pool after four months of Meniere’s symptoms kept her from her usual workouts. You can read about her experience on her coach’s Tumblr, and I’ve also copied the text below. Stengel includes a video on the webpage, and when I watched it I kept thinking, “I want to be like Betsy! I want to do bilateral breathing again!!”

SWIMMING WITH A VESTIBULAR DISORDER: A DIZZY CONCEPT?

   Rolling over carefully to keep my head straight, I open my eyes and look up at the ceiling. Nothing is moving. That’s good. I turn a little more to see out the window for a hint of the weather.  Gray, low clouds could mean low pressure that can cause anything from headaches to vertigo.  No…not using that as an excuse today.  I’ve been waiting four months to get back in the pool.  I can do this.

   Half an hour later, I step out of the women’s locker room onto the pool deck, hoping that I’m showing a confidence I don’t feel. Good, the pool is empty save for 2 women exercising in the far lanes. I wave back at their greetings acknowledging my several months’ absence. No distractions right now, please. Fortunately the furthest right lane, the one with the ladder, is free.  No more thinking about this, let’s get to it, I tell my brain.  

   I’ve been doing a lot of talking to my brain lately.  Current research on vestibular (balance) disorders as well as tinnitus (ringing in the ear) shows some success in slowing dizziness and reducing noise in the head through meditation, including self-communication with the brain.  For the past four months I have been struggling with vertigo, imbalance, fatigue, and tinnitus.  For several years, I’ve been quite deaf in my left ear, and the hearing in my right ear is declining, so I wear hearing aids.  These symptoms and several other unpleasant challenges are due to Meniere’s Disease, a condition in the middle ear that I was diagnosed with some twenty-five years ago.  

   I am not alone in my dizziness.  Meniere’s Disease is but one of the many vestibular disorders experienced by about 69 million American adults over the age of 40 at some point in their lives. That’s more than 35% of the US population. Many of these vestibular conditions become chronic, making life truly challenging for these patients and their families.  Moreover, tinnitus is not only a Meniere’s symptom.  In total, 60 million Americans experience tinnitus at some level, with 16 million having severe enough symptoms to seek medical attention and about 2 million become truly debilitated by the condition.   This number has increased as many veterans from Iraq and Afghanistan report serious problems with tinnitus.  In fact, for three consecutive years tinnitus has been the number one service-connected disability because it is most often the result of extreme noise exposure from either a single impulse noise or the accumulation of noise exposure.  

   I consider myself fortunate  because while I do experience prolonged periods of Meniere’s, usually when I’ve become overtired and stressed, a treatment I received about 12 years ago that is not successful for many Meniere’s patients, greatly reduced my vertigo symptoms and has allowed me to live a fairly “normal” life, including  swimming and yoga, both of which I consider important to maintaining my health and wellbeing at every level.

   So here I am standing at the end of the lane, adjusting my cap, ear plugs, and goggles, partly to give me time to settle down and focus on why I’m doing this. I nod my head as I remember my visit a few weeks ago with my ENT (ear, nose and throat) specialist, who is one of the world’s experts on Meniere’s Disease. Dr. Rauch asked me what I missed most since dialing back my life because of dizziness, tinnitus, and overwhelming fatigue. “Swimming,” was my instant reply. “Then for goodness sake, get back in the pool,” he answered, adding, “just trust your judgment about how long and how often.”  

   “Here I am, Dr. Rauch,” I say quietly.  No more delays. I glance at the wall clock, not because I’m timing for any races but because I like to start on an even number of minutes and seconds. Silly habit but today it helps ground me to my routine.  Three deep breaths, and I finally push off the wall and glide under the water, arms locked in front, body “straight as a pencil” (Coach Bill’s term), legs pulled together for a few short kicks to keep me under water until I surface beneath the flags.  After that it’s just habit – arm following arm above and below the water, check my catch, head rolling every three strokes to breathe.  I touch the wall at the end of the lane and repeat the push-off and swim routine back to the starting point. After I turn again and am headed back up the lane, I allow myself to realize that my shoulders are relaxed into the familiar habit of swimming, my legs are giving me a fairly strong kicking, and, best of all, my head is turning in opposite-side breathing without making me dizzy.  Wow! It’s really happening.   When I make my next turn and relish the neat glide of my body, I begin to giggle out loud under water. Surfacing, I turn over to enjoy a slow backstroke, watching the ceiling tiles high above me pass and mentally noting that they aren’t making me dizzy.  Nor are the reflections in the water, the stripe moving beneath me on the floor of the pool, or the motion of my arms rhythmically moving with my stroke.  

   I don’t know if there’s a “swimmer’s high” like there is a “runner’s high.”  But whether there is or not, I definitely reached it that day. I had spent the past four months monitoring my motions, my diet, my energy output for anything that would trigger the swirling in my head, unsteady walk, nausea and noise in my head.  But this swim let me drop my caution and be myself. It took discipline to make myself get out of the pool after 20 minutes. “That’s enough for today.  Let’s see how you respond to this, “ I warn myself. 

   Smiling as I head back to the locker room, I glance back at the pool, where several more swimmers have filled the lanes.  I notice one man grinning at me with his thumb up.  Thanks, Bill, for not making a big deal of it.

   This return to swimming happened in April, 2014.  I continued to be limited by Meniere’s symptoms for several more months, but I swam two or three days per week.  During a clinic in the summer at which Bill filmed us to help check our technique, I was so deaf that he had to use hand signals when I failed to pick up his directions to us  (it would be an expensive mistake to wear hearing aids in the pool).  Although I love swimming outside, I sometimes became disoriented by the dancing reflection of sunlight above and below the pool surface.  And there was no question that on my swimming days I was more fatigued.  But I was also no longer letting Meniere’s define my life.  Now, nearly a year later, I am almost symptom-free and have returned to the active lifestyle I love, and my swim workouts last longer than twenty minutes.

When I was getting my vestibular testing a few months ago, I picked up a brochure about research being done to understand hearing loss, inner ear disease, and balance & vestibular disorders.  After reading it, I decided to donate my inner ears to science after I die, and now I’m telling lots of other people to encourage them to register as donors, too.  Even people with no inner ear or hearing problems are needed so that researchers understand how “normal” ears work.  After all, the inner ear is a very difficult and minuscule thing to study!

diagram of inner ear structures

The thing is, the registration form is not online…it is on paper.  And it is taking me a while to get around to finishing it and mailing it.  Since I am also feeling guilty about not posting lately, I figured I would feed two birds with one seed by putting up this post and creating a little accountability to send in those forms this weekend.

On the project website, you can download the PDF registry form or request that one be mailed to you.  Do it today!