Titubation part 1…

Imagine having to carry around a sign in your pocket that says “Look at me” and at random times in the day having to take it out of your pocket and put it around your neck. You also have to put this sign around your neck when you’re nervous or tired. Beginning in the late summer of 2013 my neck began to tremor causing my head to shake like a bobble head toy. At first, I thought nothing of it. I barely noticed it because it happened so rarely. Then, it became more and more frequent. Initially, it would occur once every three days. But then once every three days became once every other day, then daily, then multiple times per day, and so on.

How I feel when this occurs
How I feel when this occurs

———————— Now it has a name ———————————— In the fall of 2013 I was at one of my scheduled appointments with my neuro-ophthalmologist, Dr. Kaufman. With all doctor’s visits there’s a point in the visit where you’re asked, “Do you have any concerns?” We’re trained to ask that, as most patients go into a visit with a specific issue in mind they want addressed. There have been instances where I would forget to ask this, and invariably as I’m about to leave the room the patient adds this concern to the visit. It can be something as benign as “Could you refill my blood pressure medication? I’m running low,” to something as serious as “I meant to tell you Doctor, I’ve been feeling this sharp pain in my chest for the past few days.”[1] It happens so frequently that we have a term for it: a doorknob question. Typically when I’m asked this as a patient, my response is “no”. But this time was different. When he asked me this (which he did because he’s a very good physician), my reply was, “Actually, yes. For the past several months my head randomly shakes.” He then tested some of my eye movements in an attempt to elicit the shaking. Luckily, for both of us, his attempt was successful and the shaking began. “Oh yes, I see it now. Tell me, when does it happen?” Even though the shaking was becoming more frequent I hadn’t yet began thinking of propagating factors. “Do you notice it when you’re nervous?” After thinking about it, I replied, “Yes, in fact I do.” “What you’re experiencing is something called titubation. I can prescribe you some medication and I know someone in town that sees patients that have this.” I try to avoid taking any medications, even over the counter medications, if I can avoid it, which is ironic as part of my training is in the field of pharmacology, the study of medications and their effects on the human body. But because of this aversion I declined his request (I anticipated that this referral would ultimately end with the movement disorder specialist offering me medication). “I think I’d like to see how this plays out before I take anything,” was my reply to his generous offer. The symptom now had a name. Prior to this I had simply referred to it as ‘head shaking’. In my mind, this was progress, the fact that it had a name meant someone before me had gone through this before. The optimist in me hoped that this titubation would go away by itself, sooner preferably than later. Unfortunately I was wrong.

———————– Progression ——————————–

My hope was that this titubation would spontaneously resolve itself. In the next few months, instead of resolving or even improving, it actually worsened. Already being a very self-conscious person I abhorred anything that brought attention to me. That is one reason this whole ordeal has been so tough for me- -seeing a 6’2 Asian guy with scars all over his head already screams for attention. Now on top of that add an incredibly odd gait and delayed speech. I’ve always been very aware of being looked at even before the tumor was found, and now with the after-effects of the surgery these looks became amplified. It took a large effort on my part to learn to ignore the stares and to come to the realization that I will be looked at for the rest of my life. The problem is that I had come to terms with being stared at due to my odd gait and delayed speech, NOT my head bobbling. For me, this was a separate issue; my hope is that ultimately this resolves. I envision myself two or three years down the road speaking and walking normally. Hoping this was difficult but not impossible given the words of the neurosurgeon himself.[2] From all my readings it may be temporary but many articles also state that it also may be permanent. The possibility of this affliction being permanent is hard for me to think about. People seem more put off by the head shaking, even more so than my abnormal gait and speech. The episodes became frequent enough that I decided to log them, keep a titubation diary. It’s ironic, I tell patients to keep diaries all the time. If a patient were to come to me complaining of headaches before pedaling medications I would encourage them to first keep a headache diary and to document items like when the headaches occur, what time of day, and how long it lasts. If a diabetic sees me for high blood sugar readings I always tell them to keep a blood sugar log, detailing their blood glucose readings, date and time of those readings and what was eaten before or after the readings were taken. I often have patients that tell me that they are worried about their weight. My first action is typically to ask them to keep a food diary- a log of every meal and what was eaten. These logs not only provide me a source of information but also prove beneficial to the patients themselves; it allows them to tangibly see or decipher any possible patterns. Here is an example of my thought process as I scrutinize these logs: Let’s see, this diabetic patient’s food log shows that at 8pm every night before bed he has a candy bar. My first course of action would be to try and cut out this habit and see how his sugars respond.[3] This titubation diary did help me. I extrapolated a few patterns from it: The titubation occurs in three situations: 1. When I’m under any duress 2. When I’m fatigued and 3. Randomly The titubation does NOT occur randomly when I am standing, BUT fatigue and duress will trump standing every time. In other words, if I am nervous, simply standing up does not stop the titubation episode. It also does not occur when I am driving. It is the effect it has on those around me that I still have trouble getting past, which I plan to discuss in the next post.

http://www.youtube.com/watch?v=SjIJVmSq5Xo

This is a great video depicting the titubation.  I considered taping myself during one of the episodes but decided against it, especially after seeing this clip and realizing how close it resembled my symptoms.

[1] Because of the seriousness and reversibility of a heart attack (we call it Acute Coronary Syndrome or ACS), chest pain is not a complaint we take lightly. When I say reversible, I don’t mean there’s a magic pill that can stop a heart attack, but once it is discovered specialized cardiologists can intervene to ‘clean’ the affected artery(ies)

[2] He tells me at every visit that he expects a full recovery.

[3] Unfortunately, not all cases are this straight-forward– in this case what would probably happen is that even with this lifestyle change his blood sugars would remain persistently high, at which time I would change his insulin dosage

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