Tag Archive: symptoms

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.

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.



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!

Getting into bed

Before my 2013 vertigo episode started, I got in and out of bed in a very active way. I was in constant motion as I approached the bed, tucked my hands under the pillow, placed a leg on the mattress, and slid into bed nearly horizontally, ending on my right side. Getting out of bed was similarly fluid: a sudden movement to flip onto my left hip, raise the blanket, and lever upward, then an immediate step forward into walking away. (I should mention how startling this was to my cat if she happened to be sleeping on the comforter!)

All that changed with vertigo. Lying flat was my worst trigger, and going to bed became a nightly torture of nausea and holding on for dear life as the room spun. I got into and out of bed very carefully. Verrrry deliberately. I wake every night to use the bathroom, and I would walk with my arms out, ricocheting off the walls and doors jams as I made my way down the hall.

I believe it was summer 2015–around the time my tinnitus died down–that I found my self climbing into bed with my old habits. Not quite as vigorous, a little caution to be sure, but definitely a flowing move toward horizontal. I realized my nightly walk to the bathroom was more upright, more sure-footed. This was a clear sign of how far I’d come on my path to returning to health and normalcy. A small, but meaningful, sign.

Monday, Monday…

So this morning I got out of bed and noticed right away that I had some vertigo going on. The best way to describe it is to say my eyes felt wobbly. To be honest, things have been a little worse lately, if I can even say that with my symptoms being so mild. Not long ago I was rejoicing in my ability to pull a sweatshirt over my head while walking down stairs (!!) and to duck laterally under a barrier at the airport in order to retrieve my dropped boarding pass. But recently I fell out of balance twice in one day, hit the wall in my stairwell a few times (always when I am turning the corner), and even took off my sunglasses before going down steps. Clearly my vestibular system was struggling.

I decided to try my exercise video this morning and to stop if I couldn’t do it. The routine starts with jogging in place, and I took one step and almost burst out laughing. There was no way I could jog! So I followed the “modifier” on the video and marched in place. I modified many of the moves and found that by the end of the video, I was nearly back to normal. It seems that 30 minutes of familiar, controlled, and constant movement was enough input for my vestibular system to get its groove back.

Update: I noticed a pattern of having vertigo on three of the past four Mondays. At first I thought: gee, am I that stressed out about going to work on Mondays?! But then I realized that I do a yoga exercise routine on Sundays, and in that routine I bend over and put my head straight down for at least 30 seconds. I think that is the problem. I have had this happen before where the trigger and the symptoms are separated by a day. (Lying down in bed seems to exacerbate things.) So  next Sunday I’ll not put my head in such extreme positions, and we’ll see how I feel on Monday.

Later update: it worked! I haven’t had any “Monday trouble” since modifying my Sunday yoga workout.

Yesterday I had the opportunity to attend a Muslim prayer service. I had never visited a mosque before, and I was excited to not only tour the building but also be a guest at the Friday afternoon service called Jumu’ah. During the service we sat in chairs in a balcony so we could observe.

During each of their five daily prayers, Muslims follow a sequence of movements leading to prostratration, where the forehead, hands, knees, and toes are the only body parts touching the ground. I immediately noticed that this could be difficult for a person with a vestibular disorder, even thought there are pauses between the positions “to let the bones settle.” The woman guiding our group tour explained that if Muslims are physically unable to move through the prayer, they can pray by sitting in a chair and approximating the movements. The prayers can even be done lying down by crooking and straightening one’s finger to represent the usual body movements. I appreciated that the prayers of Muslims with permanent or temporary physical disabilities are considered just as holy as those of their brothers and sisters who move through the complete prostration.

Two of us from the tour group stayed with our guide and attended the Asr prayer. We knelt on the floor waiting for the call to prayer. Our guide said I could either sit and observe or join in the prostration if I wished. I knew I shouldn’t put my forehead to the floor several times in a row, so I said I would just sit and stand with the group. I forgot about the move where everyone bends at the waist, though. I felt very odd standing with everyone bent, so I bent over, too. I didn’t think this would be problematic since I bend to tie my shoes in the morning and also sometimes in exercise classes.

Yet, last night, I felt very strong vertigo in bed as I rolled over in my sleep. This was not the mild stuff I usually get upon lying down. It was true, strong, centrifugal vertigo — the likes of which I hadn’t experienced for months. I was scared to get up. I hoped I was dreaming.

But when I got up, I didn’t feel too bad. I shaved my legs with my shoulder braced against the shower wall, but I couldn’t tell if I really needed to do that or if I was just frightened and uncertain. As the morning went on, I could tell there was truly something going on. Maybe I didn’t get out of bed with spinning vertigo and puke (which seemed like a distinct possibility when I first woke!), but I tilted and fell leftward when putting on my socks, pants, and shoes. That’s not normal for me. I tilted left a few more times during the rest of the day as well.

I went ahead and went rock climbing in the gym as planned. I didn’t get any sudden swoops on the wall, which is what usually happens if I climb with vertigo, but I came down from one climb feeling distinctly nauseous. It happened a few more times but more subtly. I wouldn’t feel nauseous exactly, yet my mood would be subdued and down. Then after my head had been still for several minutes I would suddenly perk up and be my usual cheerful self. In the past I’ve felt “off” like this for days, and it begins to feel normal after a while. It’s only when it goes away completely that I can really perceive how poorly I felt.


A few months ago, I was awakened several times in the middle of the night. By the third time, I figured out through my sleepy haze that I had tinnitus clanging in my head. Loud enough to wake me. Oh great, I thought as I rolled over. A new symptom.

Thankfully, it has never been loud enough to bother me during the daytime. Twice when I came home to a still, quiet house I could hear it, but otherwise I hear it only at night, when I lay down in bed and that particular, heavy silence settles over me. I normally wear earplugs at night, and those make the tinnitus seem louder because the ambient noise is muffled and no longer competes with my internal soundtrack. (The first few nights I took out the earplugs while sleeping!) The tinnitus has two main pitches, a C# and a G# an octave and half higher.  The G# was sustained, but the lower C# has an annoying Morse Code-type rhythm.  The irregular pattern is incredibly distracting.  I was often aware of an extremely high hiss as well.


C# and…G#. Fantabulous.

I phoned my otoneurologist to find out if I should be worried. Since my hearing was stable and I had no new symptoms other than the tinnitus, he said not to worry and sent me on my way. I’m still not sure what I think about that. There is so much more that he could have said that would have been helpful–but more on that in another post.

I found some message boards online and was reassured to see that many people posted about tinnitus “flares.” This mirrors my experience. It got worse and better, louder and quieter, simpler and more complex over time. I didn’t find any clear correlations. One night I had an entirely different sustained pitch, and one morning–during a time when the tinnitus was only one pitch and relatively quiet at night–I woke on my left side with the familiar C#-G# clanging in my head again.

I’m guessing the tinnitus is here to stay, but there is a part of me that hopes it is triggered by the unusual work stress I am facing, and that it will all go away once the work problems resolve. Here’s hoping!

Return to cycling

Every summer, my wife and I take a day trip to a nearby state conservation area where we enjoy a beautiful three-mile bike trail. I’ve been trying to get back on my bike in preparation for a triathlon later this season, and this trail was going to be my first bike outing since last fall. Back then cycling was pretty scary for me. It took a lot of concentration, and since I couldn’t let go of the handlebars to signal, I had to stick with closed roads. It was stressful. It was not fun.

This spring I experimented with using adult training wheels on my bike for stability, and I tried different bike mirrors in an effort to eliminate the need to look over my left shoulder (turning my right ear down is a trigger for me). A few weeks ago I rode around in circles in a parking lot to see how I was doing. I was OK riding but had some trouble getting going, making sharp turns, and signaling. I hoped to practice more before our day trip, but I didn’t have a chance.

This past weekend was my test on the bike trail. It was awesome! I was steady but nervous on a short section of road we had to go on to reach the trail. My wife checked for traffic and told me when it was safe to turn left. On the trail I cruised along and eventually realized that I was biking without thinking about biking — just like before I got vertigo! I’ve always been cautious on downhills (I assumed it was due to a bad crash I had as a child, but maybe it is also the inner ear hypofunction), but otherwise I was confident and unconcerned. On the way back I road with traffic like a pro and even signaled a turn! It was amazing.

This demonstrates how far I’ve come. I’ve regained other skills recently such as drinking the dregs of my tea while walking to the sink, and staring at something over my left or right shoulder as I walk past it IN A STRAIGHT LINE. I went on a hike this weekend as well and discovered that I can hike without thinking about hiking. That is also a big difference! Sometimes my unsteadiness is quite subtle, but even if the adjustments I make are nearly unconscious, I always notice when the need to pay extra attention is gone.

This feels great, and I am so excited!

Return to ONE PILLOW

sleep_300px-Little_Nemo_1906-02-11_last_panelI have been sleeping up on two pillows for the better part of a year and half. Every time I tried to go down to one, my vertigo got worse, so I’ve stayed up–but my goal has been to get back down to one. I decided I would make my move after the Splash and Dash I participated in this summer. (I didn’t want to screw things up right before I was to swim in the ocean!)

I had hints that it might work out. First, last January I had an MRI and had absolutely no vertigo even though I was lying flat on the table. I was so surprised! And second, the vertigo and nystagmus that I have experienced nearly every night for the past 500 nights when I lie back in bed has gradually diminished. It was a curious process, as the nystagmus got very disorganized and weaker, symptoms came and went, very inconsistent. But lately I can lie back and feel nothing. Nothing at all. Novel!

I’ve been getting acupuncture to help manage my stress levels and occasionally to help with the nausea of vertigo. My acupuncturist has been very willing to work with me, for example, when I suggested doing habituation exercises (which are nausea-inducing) immediately before treatment. Likewise, she was game for me to experiment with one pillow during treatment. I lay on a table with only one…and it was fine. That night I went down to one pillow in bed. That was…weird. It felt very unfamiliar and as if my head was at a negative tilt, even though it was level. I was unsteady for a few days, but now I am sleeping on one pillow with no ill effects. It’s been such an easy transition that I am wondering if staying up for as long as I did was a mistake! Then again, the nightly vertigo was so nauseating and strong that I think I can forgive myself. Even my vestibular physical therapist thought I might never sleep on one pillow again. So we’ll see how it goes. Maybe I can put my extra pillow back in storage!