One of my mentors in neurology at Yale was making a point to me as we were struggling to figure out how to help an intractable headache patient in clinic one day. Literally nothing helped this person. No standard treatment made any difference. All her tests were normal and she appeared totally normal, yet had headaches all day every day that she described as the worst pain imaginable. As you can imagine she was also very anxious and had a lot of stress. In this situation we always say, “Well of course the patient has anxiety, she has daily intractable headaches.” His point to me, however, was sometimes a symptom such as headache can be part of a person’s mindset more than anything else. It just may be the way they express distress. Maybe the headache is caused by the distressed mental state and not the other way around. What he said to me was, “Just sit for a while and think about your head. If you try, you can talk yourself into a headache.” I tried it and found out that he was right.
I’ve always tried to experience what my patients do whenever I can. I know what carpal tunnel feels like after riding a road bike for a long time. I’ve had a migraine visual aura. We’ve all had anxiety, palpitations, insomnia, headache, and we’ve probably all felt dizzy, including the “head rush” of standing up too quickly. But there’s a huge separation between symptoms and sickness.
In an article called “Persistent postural perceptual dizziness is on a spectrum in the general population,” researchers theorized that PPPD, a life changing and disabling condition in many, is present to some degree in many normal people. PPPD is a feeling of dizziness or a non-spinning vertigo provoked by complex visual stimuli or movement. The study showed that many normal people report having the same symptoms as a patient who is “sick” with PPPD. This was demonstrated by two questionnaires given to PPPD patients and a group of healthy volunteers and students.
One of the questionnaires used in the study, the Visual Vertigo Analogue Scale (VVAS) looks at nine items including: walking in a supermarket aisle or shopping mall, riding in a car, being under fluorescent lights, watching traffic go by, going down an escalator, watching a movie in a theater or action on TV, and walking on a patterned floor. All of these stimuli can cause disabling symptoms in a person with PPPD. But many people have these symptoms without being distressed by it. In other words they have the symptoms but they aren’t sick. The study found that, depending on the group and the measure, between 4% and 54% of non-patients scored greater than a 25th percentile range of patients with PPPD. The authors theorize that these symptomatic but not sick people are an at risk group that may develop the disease if they suffer some insult such as labyrinthitis (an inflammation in the inner ear sometimes from a viral infection), or a concussion for example. It’s an interesting question.
To me, though, it begs another question: “If you think about your head long enough, can you feel dizzy?” If I’m standing by a tree and look up at it, I feel fine. I can look up into the tree and look down again and it doesn’t bother me. I’ve been to the Empire State Building and I’m afraid of heights so I feel nervous up on the observatory. If I’m standing on the observatory and then look up at the radio tower above it I feel nearly like I’m going to fall. It’s my situational PPPD. Why is that? Maybe I’m starting with that uneasiness of being up high and it predisposes to a distressing feeling that doesn’t happen on the ground by a tree.
I think about these things, and wonder: that patient of mine that has trouble walking into a supermarket – how can I help them make that their tree, rather than their radio tower?