Trigeminal and Geniculate Neuralgia-Like Symptoms

These symptoms could really go under the same category of “Intracranial Pressure and Headaches” and “The CNS Symptoms” because they went hand in hand with those symptoms or were actually part of those symptoms.  But I’m mentioning them here as a separate category simply because there’s a diagnostic name for some of these symptoms.  After my Nov 2010 flare, I essentially lived with these symptoms to some extent every single day.  When I hit the “hormonal sweet spot”, these symptoms might be gone for a few minutes, or a few hours, but they always returned as my “homeostatic sweet spot” ended.  There was no doubt in my mind that TH/Iodine homeostasis greatly affected these symptoms.  There were subtle differences in the symptoms depending on whether or not rapid increases or decreases in T3, T4 or Iodine occurred.  But I would say that in general, rapid increases in TH and Iodine, resulting in a more “hyper” state, increased the sharp, stabbing or shooting, or “electric shock-like” pains in my face and deep through my ears.  Of course, the flares increased these symptoms as well.  My facial neuropathy was just as bad when I was “too low” or in a “hypo” state; the pain was just as intense, but it was of a different character than the stabbing “electric shock” like pains that occurred when I was “too high”.   It’s too difficult for me to describe the facial pain when I was “too low”, but it was just as painful.

Here is the write up of my symptoms which I presented to a neurologist after my first Nov 2010 flare:

Facial “neuropathy”: like a tingling/numbness around my eyes in particular:  just below the eyes on the cheek, just above on the brow, across the bridge of my nose; also my upper lip.  Right side is worse than the left and a small area on my right cheek seems to be the nidus or focal point.  Basically, the symptoms seem to follow the ophthalmic and maxillary branches of the trigeminal nerve, and are like a trigeminal neuralgia.  At its worst, the symptoms were continually moving around this area, waves every 10-15 seconds, round the clock, often initiating on the right cheek area and spreading to the left side.  Symptoms tend to be less in the AM, progress throughout the day, and worst in the PM.  Symptoms seem to be exacerbated by eating.  Very very rarely have I experienced a mild tingling around the lower lip, essentially, that area hasn’t been of concern yet.  At the height of the symptoms, I experienced numbness across the bridge of my nose and in the sinus area.  Although I had decreased sensory to the skin in this area, it was like the numbness and symptoms were “deep” to the skin as well, and particularly present in the sinus area.  At the height of the symptoms, I experienced mild to moderate bilateral earaches, sharp shooting deep pains to ears, right more than left, as well as occasional moderate to severe tinnitus, and even a little numbness to my gums above my back upper molars.  Also during the worst of these “flare ups” I experienced “brain fog” and disorientation and “headache”.  Additionally, these symptoms seemed to either cause, exacerbate, or correlate with my severe dry eyes, “eye” pain, severe dry sinuses, and moderate back of the throat dryness (I still have saliva from my lower lip area, but I haven’t really experienced the “neuropathy” symptoms to that area either).

After doing an MRI to rule out a brain tumor, the neurologist had no further insights as to what might have been causing these symptoms.  Over time, especially once I was ON TH medication, it became clear that these symptoms were greatly improved with appropriate doses of TH.  And I experienced incredible bouts of pain free clarity while on higher doses of iodine with lower serum TH levels, which felt rather miraculous at the time.  On the other hand, these symptoms were greatly exacerbated when I was NOT on TH, and in particular, when I was in a “Hashitoxicosis” state.

I personally suspect that at least some of these CNS symptoms may potentially be something called “Hashimoto’s Encephalopathy”.  In general, this diagnosis isn’t made until the person is practically seizing, or is psychotic or comatose, and the person has an extremely high antibody titer (in the thousands).  However, I suspect that many people with Hashi’s who are having all kinds of CNS symptoms, such as myself, may be suffering from an unrecognized and under diagnosed version of this.  I have a pretty high TPO antibody titer, ranging from 300-600 depending on the lab measuring it.  Although this is considered “too low” for HE, I strongly suspect otherwise, especially since antibody titer levels aren’t supposed to be diagnostic of the severity of Hashi’s overall.  Additionally, I think there could easily be other antibodies coming into play here, that are as yet unrecognized or simply unknown.  Most people with Hashi’s have some kind of CNS symptoms, and it wouldn’t surprise me if these antibodies – or whatever it is that’s causing Hashi’s – has something to do with this.

There’s a reason they call Trigeminal Neuralgia “The Suicide Disease”.  These CNS symptoms are incredibly painful, debilitating, disorienting, and disabling.  I had no idea a person could live with such continuous symptoms, and I certainly had no idea that I would be one of them someday.


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