The Medical Consumer's Advocate
That spacy feeling
Q: 
I have been dealing with
chronic head, face, and neck pain (discomfort?) which has
remained unchanged essentially for 30 years since I had
mono in college. I have visited many doctors, undergone many tests, and
tried many treatments. Currently I have the diagnosis
"fibromyalgia" and am taking Klonopin and
Elavil. This has increased my ability to function but has
not really reduced the symptoms. I have never really
believed this diagnosis was correct. I have few of the
typical characteristics such as tender points or
flare-ups.
Over all of these years, I have found the pain tolerable. What
troubles me most is a
"spacey," full feeling in my head. Even when I
was younger, I had experiences with this, such as at
times when there was a great deal of noise around me. For
30 years, however, that feeling has been constant.
Recently I had a head cold and flew on an airplane. I
experienced considerable discomfort in my ears. They
"plugged up" and remained so for a few weeks.
Now I am concentrating on the area around my ears. I
realize that the feeling I had immediately after the
flight was merely an intensification of what I always
feel.
My question: is there such a thing as chronic
eustachian tube dysfunction? Have you ever heard of a
person with the type of long-term discomfort that I have
described? The pain is never acute as in sinusitis;
however I always have discomfort over my ears, cheek
bones, and behind my eyes.
I would appreciate your thoughts and will relay them
to my internist.
A: I, too, am skeptical about the
diagnosis of fibromyalgia, but since I am pretty ignorant on
that topic I am going to keep my mouth shut. Instead, I will
focus on your observation that the plugged sensation you had
after the flight was basically a heightened version of your
usual sensation.
Might you have chronic Eustachian tube
dysfunction? Absolutely. I see people all of the time in
their 30s, 40s, 50s ... you get the idea... who have had
symptoms that sound very suggestive of ETD, for decades.
But can ETD cause neck pain, pain behind the eyes, or
pain in the cheek bones? Probably not. Your internist should
consider the possibility of chronic sinusitis, the
symptoms of which can be VERY subtle -- a bit of colored
postnasal drainage, a bit of facial pain may be the only
symptoms. This would explain the pain in the cheek bones and
the pain behind the eyes. This is easily diagnosed with a
"noncontrast CT of the paranasal sinuses" (your
internist will know this), but the more cost effective
strategy is to treat you empirically and obtain the CT only
if you do not respond well to the empiric treatment. There is
no single "cocktail" to prescribe in such a
situation. Someone (usually an ENT) has to ask you a lot of
picky questions to get some sense as to whether allergies are
playing a role in the problem, whether your nose is
excessively dry, excessively wet, excessively congested, and
so forth. Based on this line of questioning, I can generally
decide what combination of drugs to use to treat someone for
what I think might be chronic sinusitis.
By the way -- I have no idea what is causing your neck
pain. Any chance this is something unrelated, such as
arthritis, an old neck injury, "chronic tension
headache," or something else?
Getting back to the "spacy" feeling, this could
be due to ETD. A very simple, painless, and inexpensive test
called a tympanogram would rapidly prove or disprove the
presence of ETD (but, bear in mind, even if it looks like you
have ETD, this is no guarantee that any of your symptoms are
actually due to ETD!)
The spacy feeling could also be due to chronic sinusitis.
Many ENTs believe that there is a sinus equivalent of ETD
(basically, air trapped in a sinus develops a pressure
difference relative to the outside world, and this pressure
difference is sensed as pain, pressure, etc.) Not exactly
sinusitis, but similar. Other inner ear problems can result
in a spacy feeling, but you have not described any auditory
symptoms, no vertigo or imbalance, so I would lean away from
other inner ear problems.
No offense to your internist, but an ENT would be the
best person to sort through these possibilities. But I have
to warn you, you have one of those nebulous "todo mi
cuerpo duele" problems (my whole body hurts) that
scares some ENTs away. You can best deal with this by coming
to the appointment well-prepared, which means well-organized.
Look at some of the Symptom Guide essays on my
site, such as the one on stuffy nose,
or the one on dizziness. These
essays might give you some idea what sorts of things your ENT
will need to know to arrive at an appropriate differential
diagnosis.