Hello, Nystagmus, my old friend

Out of the blue a few weeks ago, I experienced nystagmus when turning my head to the right in bed. It has been ages (years) since I had my eyes jerking around like that. I have no idea what precipitated it.

In other news, since then I have restarted the neck/back physical therapy that I had to stop in 2014 when my vertigo got bad. The first time the PT was working on my neck when I was supine, I felt dizzy. I asked if it was OK for me to place my feet on the treatment table, and they said yes. From that day on, I always bend my knees and keep my feet flat on the table when supine. I also keep my eyes open. My eyes and my feet provide reliable proprioceptive information that counteracts any confused messages sent by my vestibular system. I haven’t felt dizzy on the table since.

Last week I felt distinctly unsteady when I left my PT appointment. I had learned a new exercise that required me to be supine with my head flat on the ground (usually my supine treatments are on a pillow). Then immediately after that, my PT tried to manually adjust my back. I started supine, and as part of the adjustment she rolled me to my right. I felt fine as the appointment ended, but as I walked out of the room I felt unsteady and had to slow my pace. Instead of getting out my keys while walking, as I usually do, I deliberately stopped and took care of that before walking again. I got into the car to drive away and did not notice any more symptoms. Lying flat and turning to the right were big problems when my vertigo was at its worst.

I am doing back & neck exercises and stretches at home, which means I am challenging my vestibular system every day. I have become habituated to many movements over the past four years, but there are still some movements that are outliers–and I am finding them through physical therapy.  Today I nearly fell in the shower, which is alarming no matter how infrequently it happens. I was leaning over and tilted my head to the right in just the right way, apparently, and started to careen over. Thankfully I caught myself, heart pounding.

Ceiling fan

Recently I purchased a ceiling fan for our home. Installation was not difficult (I’ve installed fans before), and although I considered using my belay glasses to avoid tilting my head, I decided against it, figuring I would be OK. My spouse helped me, and that decreased the amount of time I was peering overhead. Success! I did not feel dizzy or experience nystagmus.

A few hours later, I was planting a container garden on our deck. Twice I stood up after working on a planter and then lurched to the right. I didn’t feel like I lost my balance–just misstepped or something–but after the second lurch, my spouse asked if I was OK. I realized that looking up at the ceiling during the fan installation had indeed rearranged some otoconia in my inner ear, and looking down at the planters and then standing and looking forward was enough to throw off my vestibular system. Those two instances were the only problems that I noticed.

Cycling – still not my favorite thing

2017 was the first summer in 15 years that I didn’t ride my bike. My spouse and I were busy hiking, and September came and our bikes were still in storage.

2018 was almost the same, but we made an effort and managed to ride twice before Labor Day. I am still quite fearful on my bike. Getting rolling is hard for me. I think the trouble comes from looking straight down at the pedals to get my feet set and then looking up at the road before I begin to move, sometimes also swinging my head left and right to check for traffic. If I move my head too quickly, my balance feels scrambled. My solution is to wait a few beats after I look up and then start pedaling. Even so, my “takeoff” is still wobbly and nerve wracking.

Our first ride was in the small town/suburb were we live. We decided to bike a mile to a nearby park. The route required two right turns and had a sizable shoulder (ersatz bike lane), so it seemed like something I could easily do. It is still hard for me to check for traffic while riding and I can barely signal turns, so my spouse rides ahead of me to do these tasks for us both. (Same as in this 2014 post.) Even though this ride was short, I asked my spouse to ride slowly and stay with me. That made me feel a lot safer.

Our little jaunt around the corner to the park was terrifying for me. I actually talk out loud to myself as I ride in an attempt to calm myself down. I remind myself to breathe, to relax the muscles in my legs, to not deathgrip the handlebars. I repeat over and over, “You’re OK. Relax. You’re safe. There is plenty of room to ride here. You can always put your feet down and stop. Relax.” Yes, I say this out loud! Thankfully, the wind carries my voice away, and I don’t think my spouse notices.

Our second ride this summer was on a bike path that we know well. I feel safest cycling on bike paths, especially the ones that are flat and straight. (This one was hilly and curvy, but beautiful.) My spouse loves pedaling fast and picking up speed on the downhills (which scare me), while I prefer to go slow (even slower downhill) and ride my brakes. Our solution is for my spouse to bike as fast as they want and leave me in the dust, then wait at the major intersections so we can meet up and turn together. (Sometimes they bike back and join me.) This allows me to go at a slow pace that is comfortable and enjoyable.

Bifocals

After about a year of “getting by” with deteriorating near vision, I finally went to the eye doctor and was not surprised to walk out with my first prescription for bifocals. I went to a local, privately-owned optical shop (i.e. not one of the big chains) so that I would have a maximum number of options and bells and whistles available to me.

Once I determined that my new prescription would work in my old frames, I spent thirty minutes discussing the lenses with the optician. I explained my past trouble with vertigo and my lazy eye (still somewhat lazy despite surgical correction) as well as current troubles with maintaining a turned position with my neck (long story; it’s better now than it used to be!). I was willing to order lenses with a visible straight line across them if that would be best for my body. Nowadays the line between the top and bottom of the lens can be made invisible, but this means that the areas where you can see clearly are circumscribed and do not extend from edge to edge across the lens. I was afraid that using the clear areas would have me holding my neck in an uncomfortable position.

The optician listened carefully and described my options. They placed opaque tape over the bottom part of my current pair of glasses to mimic the bifocal and then had me walk up and down a short set of stairs in the office. That was when I realized that vertigo would not be a problem for me. Having bad vertigo for so long made me more tolerant of not seeing and having mixed information come into my vestibular system, so having the stairs be a bit blurry was no big deal.

I opted for the lenses without the obvious line. Based on the work I do and my hobbies, as well as concerns I expressed about using bifocal lenses, the optician decided to increase the upper part of the lens by 1mm. This particular optical has a 90-day return policy, and the optician promised that if I hated the bifocals (or if they caused me pain in my neck), I could bring them back and they’d make me a pair with the visible line for free.

I’m happy to say that the glasses are working out fine. I adapted very quickly to them and have had no problems with my balance because of them.

Float Tank

I recently received a gift of 60 minutes in a float tank. This is a relaxation technique that involves floating alone in a tank of 92-degree water with a saline content so high that you easily float. You can make it dark, and silent, and can even close the lid on your tank or float pod. (It does not latch or lock, of course!) The lack of sensory input can be profoundly relaxing and meditative; some people even sleep while floating.

The natural position of my head while floating was slighting tilted back, with the water coming about halfway between my hairline and my eyebrows. Relaxing the neck and head into this position can be hard for first-time floaters since the body’s instinct is to lift the head away from water to ensure easy breathing. One must consciously relax and allow the salty water to fully support the head so that the muscles in the neck can completely relax. I concentrated on doing this, and as I found myself periodically tensing my neck and lifting my head, I re-relaxed again and again.

The amazing thing was that I experienced no vertigo during or after my float. Tilting my head back was a major trigger during the years that my vertigo was the worst, and I actually avoided tilting my head back entirely for a very long time. (I’ve recovered my range of motion and flexibility now. See Neglected Muscles for related info.)

My spouse, on the other hand, got nauseous in the float tank. About halfway through their float, they had to sit up, open the lid for cool air, and turn on the light to avoid getting sick. I would float again; they will not!

Bowling

My workplace held its holiday party at a bowling alley this year — it was a lot of fun! I noticed, however, that the unique sequence of movements in combination with the lighting caused me to be a bit unsteady.

Lighting: We were “glow bowling,” which I though meant everything would be black lit with neon bowling pins, but in actuality it just meant that the lights over the lanes were dimmed and extra rows of colored and flashing lights made the ambiance festive.

Movements: I sat on a low bench watching my teammates bowl. I frequently looked up at the ceiling-mounted scoreboard. When it was my turn, I quickly glanced up at the board to confirm that I was next, then stood and walked to the ball return, looked down and bent over to get my ball, then turned and looked down the lane, ready to bowl.

Twice I tilted or stumbled as I rose from the bench. (This mortified me, since I was with coworkers, and my boss was on my team!) And more than once, I felt a little “off” as I readied to throw my ball. I believe this was due to the dim lighting over the lanes; after the sequence of movements that I followed to get to the head of the lane, my body needed to “reset” when I finally stood still, and the dim lighting meant that the visual input my vestibular system was processing was less sharp than usual.

Do over: Two weeks later, a friend had a bowling party for her birthday. I had no problems. Compared to the work party, these lanes were fully lit, and instead of sitting on a low bench to watch my teammates, I sat on a high stool or stood. I bowled a great game!

 

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.

Neglected muscles

I recently experienced excruciating back pain every day for two weeks. It’s a long story, but suffice to say that this was unusual for me. I had a physical therapy evaluation last week and am now working on stretching some specific muscles that had become over tight. I already feel better!

During the evaluation, the PT asked me to flex and extend my back while standing. Although I regularly bend over (my hamstrings are in good shape!), I have not extended my back while standing upright for at least three years because tipping my head back was my most reliable trigger for vertigo. (In fact, a month ago in a different context, a nurse asked me to extend my neck while sitting upright, and I outright refused to do so.) But last week at PT, I leaned back without hesitation because my gut told me that I would be fine. And I was! It felt like seeing a familiar friend again, and I marveled at the flexibility I still had. The PT put me through a series of measures that had me standing, sitting, lying prone, lying supine, and lying on my sides. I moved through them all with no problem. My gut told me to take extra care moving from a prone position, so I did; otherwise, my movements were basically normal.

So that’s the good news. The bad news is that I couldn’t do even one sit up. Not one! The swinging head motion in sit ups is something that I have avoided for years due to vertigo. I’ve been exercising regularly for the past 15 months, but apparently certain ones of my core muscles still need work. For the first time, I realized the impact vertigo had on my overall body strength. Because I could not move and exercise normally, some of my muscles became weak. I modified exercises as best I could and managed to restart a regular exercise program, but still, problems remain. I’d like to see vestibular physical therapy include creative solutions for these types of muscle problems in patients with ongoing balance problems.

Boot camp graduate – sort of

Last month I decided to complete a self-designed Balance Boot Camp to fine tune my vestibular system. For two days I did the balance exercises that my vestibular physical therapist gave me two years ago, and in addition, I walked up and down stairs without using the walls or handrail. (Especially at home, this had become a bad habit.)

After two days, I saw improvement and totally slacked off on the exercises. So much for boot camp! All month I continued to use my eyes–instead of my hands–while walking up and down stairs. It feels dicey sometimes, and that’s how I know it is good for me to push my limits. I’ve been turning on the lights in the stairwell at home to help me be more safe and secure. I avoid walking indoors in dim light or darkness because that is when my eyes “check out” and I rely on my hands instead.

When I look back, I realize that I was running into the walls a lot during June. I was off balance to some extent every day. Now that it’s August, I am pleased that these modest efforts improved my balance.

 

Balance BOOT CAMP

I am embarking on a self-created balance boot camp–join me!

My BPPV has been very mild for about a year. The last notable “improvement” I can remember is 13-14 months ago when I began a workout program. I was laying down on my back to do exercises a few times a week, and each time I felt nauseous and the room spun briefly. As the weeks passed, though, my symptoms improved until I could lie down without any vestibular nonsense. Success!

Since then things have stayed pretty stable, which is to say that I have a vestibular issue at least once a week. These episodes are short-lived and mild and for the most part do not interfere with my daily life. (I believe this is true; I need to check my notes to be certain that I am not wearing my rose-colored glasses here.) Periodically my symptoms worsen while remaining mild. During these times I have mild symptoms several days in a row while my vestibular system is obviously trying to sort itself out.

For the past several months, though, the increased symptoms have been my norm. I have been careening into door jambs with some regularity, and I lose my balance around the house fairly often. I decided that since I have had no major flare-ups for a year, it is time to clean up this mess. I am headed to BOOT CAMP!

I have pulled out the exercises that my vestibular physical therapist gave me and will be doing them throughout the month of July. I will tune my vestibular system as finely as possible and reach my maximum ability–which I hope will be “normal” (but I’ll settle for as good as possible). Beyond the exercises, I’ll be challenging myself to walk down stairs without using the handrails (it is so easy to “check out” with my eyes if my hands are telling where I am in space) and looking for other ways in which I am cheating my vestibular system. Wish me luck!