Titubation part 2…

———————————— Family ————————————

My mom and step dad are now mainstays at our house, visiting from Chicago every week. They help with driving, child care, cooking, basically everything.  I like to warn those around me of this ‘head shaking,’ so they’re not so taken aback by it when it occurs.  I remember both warning them and their first encounter with it.  We were all in the car on the way to a restaurant when I turned to my son and said, “Remember daddy’s head shaking?  It might happen in the restaurant.”  (I was essentially addressing the whole car, not warning just my son).  It did not occur in the restaurant but it did start when I sat down for dinner with them that night. These days, it happens basically every time I sit down to eat.  I remember this being a particularly bad episode, with the shaking being more vigorous and lasting longer as well.  My son, who was used to it by then even mentioned it, “Dada, your head’s really shaking.”  I stood up from the table and left the room, hoping to quell the episode and also feeling embarrassed by the shaking.  My mom’s reaction was first to ask me if I was okay.  When I told her I was fine and that it would pass, I heard her then say to my stepdad, “I’ve never seen this before but it seems really bad.”  The next day I was doing some of my daily iPad programs[1], and my mom was out, leaving me with my stepfather.  I was doing a program called “Glowburst,” a game that asks you to order numbers from lowest to highest.[2]  My stepdad wanted to see the game and how I would fare.  He was impressed by my speed, enough so that midway through the game he motioned to my wife to watch, by subtly nodding his head along with a raise of his eyebrows.  It was at that time that my head began to shake.  I finished the game, but was not happy with the result.  I said something to the effect of, “I can do better than that,” and got up and left the room.  From the other room I could hear mumbling between my stepdad and wife- I could not make out the conversation, but I’m sure it centered on my latest display.  To this day, I am not sure whether that episode was triggered randomly or by my nerves at seeing my stepdad nonverbally telling my wife to watch my performance.[3]

In December of 2013 my little sister, Alice, underwent back surgery at Allegheny Hospital in Pittsburgh, as she was suffering from back pain due to severe spinal stenosis.[4]  I decided that I would surprise her and join my parents in their drive to Pittsburgh to see her[5].  After seeing her I warned her in the hotel lobby, “Alice, I’ve been having this thing happen to me. At random times in the day my head will shake.”[6]  It was at the hospital at the end of her pre-operative physical that she witnessed it first-hand.  We were waiting for the hotel shuttle to arrive when my head began to shake.  She immediately noticed and was concerned.  She got up and came to me and said, “Is this the shaking you were talking about?  Let me try something.”  She then began to rub my neck.  Unfortunately, that did not work as my head kept bobbling.  I could see her distress at seeing the titubation.

Allegheny Hospital-in downtown Pittsburgh
Allegheny Hospital-in downtown Pittsburgh

About a month later I visited both my father and my older sister, Amy, in San Diego.  Flying there proved to be an ordeal, but I’ll discuss that later.  Neither my sister nor my father had witnessed my titubation episodes yet.   I had warned them beforehand over the phone, but I knew that hearing it described over the phone and seeing it in person were completely different.  My dad had scheduled a Urology conference there and figured it was a good time to see me, my sister, and her three children.  When I arrived in San Diego my father and I went to eat at a local restaurant.  We decided to eat outside, as the weather was nice and warm.  We began to discuss his studies in Taoism and Tai-Chi, both of which he had devoted his life to.  He said to me that he had hoped I would one day write a book on Tai-Chi and its effects on health.  As he was telling me this, my head began to shake.  My dad at first did not notice, but the shaking became vigorous enough that he commented, “Is this the shaking?  That’s okay, just ignore it.”  He then went on about his thoughts on the ancient art of Tai-Chi.  Throughout the trip, I would suffer from episodes of titubation every time we sat down to eat.  His reaction to it each time was the same “It’s fine, just ignore it,” and, “It will pass.”  When I spoke to him of the titubation, he would always tell me to ignore it and that it would pass.  In his eyes, as long as it did not occur in certain situations, like when I’m behind the wheel[7], it would have no detrimental consequences.  To him, it was a symptom that was out of my control and thus not worth fretting over. 

I mentioned earlier that I had an older sister in Long Beach Island (LBI), in New Jersey.  I also mentioned that she and her husband were not happy in LBI and were looking to move.  Well in January they both found work in an Emergency Department in San Diego and had subsequently moved to Carlsbad (a suburb just outside of San Diego).  My sister and her husband had also had their third child recently, whom I had yet to meet.  Thus, once I touched down in San Diego I called her to arrange a time to meet.  She immediately suggested that I spend the night there.  Her husband, Amir, a fantastic cook, always prepares me salad and steak when I visit them.  I remember that I was sitting down to eat one of his patented meals when my head began to shake.  By then, I had become attuned to the shaking, enough so that I could feel it coming on.[8]  I was worried, more than before thinking thoughts like, what would they think?  Would it be a bad episode?  I’m not sure why these thoughts crept in to my head as I had gone through this countless numbers of times.  My sister and her husband tried to ignore it; however they were both clearly put off by it.  I remember asking my brother in-law a question to which he responded, “what?”  Even though my speech is delayed and often difficult to understand I could tell that this instance was not a simple case of not understanding.  The titubation had thrown him off so much that he did not even hear my question. 

The next morning Amy approached me and said, “Chris, this titubation thing really worries me, so I emailed Dave about it.” (Dr. David Jho is a neurosurgeon friend of my sister’s who has provided us with priceless medical advice throughout this ordeal.  He was also the surgeon in Pittsburgh who operated on my younger sister’s back).  His response to her was that this sometimes occurs after midline brain surgeries and is art of the surgical recovery trajectory, resulting in the shaking.  He also added that the symptoms can last for up to two years, and that it could take that long to determine if it’s permanent.  My sister’s and my reaction to this were completely different.  My sister was relieved that Dave had at least seen this before, and that it could go away.  I, on the other hand, had not yet entertained the possibility that this could be permanent or that the symptoms could last for up to two years.

Dr. David Jho- neurosurgeon
Dr. David Jho- neurosurgeon

You may wonder why I did not include my wife or older son in the discussion of this titubation.  The answer is simple; I do not remember my first experience of titubation with them.  My reasoning for this is that I have a level of comfort with them that I do not even notice when it occurs when I’m with them.  It’s akin to having it when I’m by myself, I do not notice it at all.

 

———————————– Friends —————————-

While the apprehension I get when I feel the onset of the titubation with my family is high, I get even more nervous about it occurring when I’m around friends.  Again, I attribute this to the level of comfort with my friends versus family. (For example, I would rather it happen around friends than a stranger I just met).  This is one of the reasons I try not to leave my house. My nightmare would to be in a public place with lots of people and to have the shaking begin, causing everyone to stare. 

Thus, I have managed to avoid these situations by essentially becoming a recluse.  However, there are certain instances that stick out in my mind.  The first occurred when I was having a check up with a local neuropsychologist.  I had just undergone extensive testing through them (IQ tests, motor tests, etc.) and this visit was to discuss the results and my possible return to work.  I was incredibly nervous.  When we sat down my head began to shake vigorously.  I vividly remember this clinician stopping midsentence and asking, “are you okay?”

“It’s fine,” I replied, “just a tremor.”

“Well, make sure to tell your doctor.”  I could see the discomfort in her eyes- this was no doubt a rare phenomenon, not one she was trained for or possibly even seen.  She was clearly thrown off by it and I could tell.  I remember leaving that encounter angry, not angry at the news given to me (she told me at that visit that while my memory was actually above the average, she thought my attention and motor skills had taken a big hit.  Enough so that she thought that me returning to work at that time was a bad idea), but angry at the way she, a professional clinician, had reacted to the titubation.  Every episode of this has caused me great embarrassment, however this was the first and only time (to date) that this caused a mix of embarrassment, shame, and bewilderment in the person I was with.  What made this worse was that she is a professional who spends her days in encounters.  Perhaps not like this one where the patient’s head bobbles and shakes vigorously, but encounters with patients with psychological issues. I would hope her training would have prepared her for situations like this, or at least increased her sensitivity towards others. Unfortunately, I was wrong. 

Another instance I remember is one with a close friend and colleague of mine, Kyle.  The winter of 2013 in Lansing was a particularly bad one, one that left us without power for almost a week.  Luckily for us, Kyle’s sister, also a friend of mine and former colleague had both power and a room for us to stay in.  Kyle was also without power and subsequently stayed with his sister.  The reason this is relevant is that for that week both Kyle and I were in the same house.  One night, Kyle decided to watch a movie and have dinner with us (my family and me).  We decided that in order to do this we needed to go to the local grocery store to get the dinner and movie.  I did not want either of my sons or wife to have to be outside in the cold, so I decided I would tag along with Kyle.  During the drive there my head began to shake.  I had not warned him of this beforehand, so I was curious to see his reaction.  He completely ignored it that initially I was not even sure if he noticed.  By the end of the drive, with my head shaking, we had carried out a conversation without any mention from him about the shaking.  We have not spoken about that car ride since, so to this day I do not know if he noticed or not.

The last instance that comes to mind occurred during one of my physical therapy sessions.  After leaving the hospital’s Rehabilitation Floor I was referred to a physical therapist who had had previous experience with brain injury patients.  I began by going to therapy five times per week.  As I mentioned earlier the titubation does not occur when I stand, thus with my therapist, Cheris Grasse, as I’m always standing for our sessions, had never occurred in front of her before.  However, this particular session was different in that she was required to perform a re-evaluation.[9]  Normally, in my sessions with Cheris we go from one exercise to the next, with no breaks in between.  Due to the re-evaluation there was some downtime in between the tests.  Some of this downtime involved me sitting.  Like clockwork, after sitting for a minute or so, the titubation began.  Both Cheris and I were surprised.  Cheris because she had not seen this happen to me before.  I was surprised because in the previous nine months of therapy this had not occurred there before.  I would describe her reaction to the titubation as concern for me.

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Having gone through this symptom for almost a year now, my reaction to it has evolved.  Initially my reaction was more introspective worrying about the titubaton itself and what it meant to my health.  Now my focus is more geared towards the reaction of the people around me.  To me it is interesting to see how the different people in my life react to it.  As my father said, the symptom is out of my control, I can’t stop it, I can only (maybe) quell it.  My ultimate hope is that the titubation resolves and goes away, but if it does not perhaps my thought on it will evolve more.


[1] I had been given some programs to do by a local therapy business, programs like Vision Tap, designed to train my cognitive abilities, motor skills, and vision tracking.

[2] The game gives you a screen with bubbles of floating numbers, as well as a countdown timer.  For example the numbers ‘0, 17, 5, 33’ are given and the object of the game is to hit them in the order of ‘0, 5, 17, 33’.  There is a time penalty for hitting them out of order.  Also as the game progresses, more and more numbers present on each screen and negative numbers are introduced.  I measure my progress as round attained.

[3] My stepdad still claims that, because of this episode, he believed the titubation to be triggered by intense focus, which I disagree with.

[4] This is a condition in which the spinal canal is narrowed (typically either by trauma or as a result of a birth anomaly) compressing the nerves contained in the spinal canal.  The symptoms of this can vary from completely painless to crippling pain.

[5] Pittsburgh is about a 7 hour drive from Lansing.

[6] I still could not eloquently describe it.

[7] I had not told him that it has never occurred when driving, however if it did I had planned to pull over to the side of the road until it passes.

[8] The problem is that once I feel it coming on there are no maneuvers that I have discovered that can stop it.

[9] I am essentially run through a battery of tests to gauge progress.

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