Shocks on BOTH sides of face

[Nancy T]

Since 1999 I've had what I believe are trigeminal-nerve symptoms on BOTH sides of my face.

They include, at various times over the years, excruciating split-second shocks below my ears (first "attack"); painless but distinctly electrical shocks going in a semicircle around my eye and often running into the side of my nose and upper lip (almost daily); a "stabbing" itch up my left nostril and on my right forehead; a "half-numb" sensation on parts of my face; needle-sharp electric shocks in the teeth (usually the upper and lower "eyeteeth" simultaneously, like when the dentist touches a nerve); crawling on one side of my chin, upper lip, or nose; an "electrified spider" jumping repeatedly onto my right cheekbone; etc.

At one point a neurologist told me that I had MS (more on the basis of Lhermitte's, I believe, though I also had long-standing dizziness, sudden unilateral hearing loss that occurred shortly after the first "shocks" attack, paresthesias elsewhere besides the face, etc.), but later they said I didn't. Haven't seen a neurologist since 2003. I also have highly abnormal auditory evoked potentials on both sides (not just the hearing-loss side), way off the charts!

The shocks and "crawling" episodes in my face continue, though mostly they are painless. All these symptoms occur about 90 percent on the left side of my face, but also very distinctly on the right.

My question: what else besides MS can cause these symptoms on BOTH sides in a 42-year-old woman? What is the differential diagnosis?

And would you call these symptoms trigeminal neuralgia (despite their not being excruciatingly painful, except the first batch), or is there another term used?

The doctors I saw never really said anything about the facial symptoms, because my main issue was always dizziness and hearing loss.

Thanks much,
Nancy T.

[Nancy T]

Thanks, Dr. Lim--and everyone--for your comments. I appreciate them very much.

I know doctors can't always find the answers, and I long ago gave up expecting a diagnosis (and I don't really need one)... but I still can't help wondering!

Nancy T.

[Michael Lim, MD]

Dear Nancy,

I think that your question goes beyond trigeminal neuralgia.  I am going to refer you to our neurologists.

[Nancy T]

Dear Dee--I understand what you're saying--my heart goes out to those suffering from real TN.

I only experienced the really excruciating shocks for a short time in 1999--maybe a couple dozen of them altogether over a couple of weeks. They only lasted a second.

But they were so incredibly sharp and painful, making me sit bolt upright in pure shock and surprise, that I know if I had these in a prolonged way like people with real TN, it would be unbearable.

I didn't see a doctor then because the shocks stopped, and I vaguely assumed they must have been some kind of "sinus" problem; I knew nothing about cranial nerves! Four or five months later stuff started happening again, but mostly short-lived or else painless.

It sounds like you have suffered a lot. My heart goes out to you. I do have a lot of weird things going on, and the years and years of wondering and having had (some) doctors say or imply that my problem was anxiety took a severe psychological toll at times, but I am constantly thankful that my physical problems are relatively mild and under good control. I know I'm very lucky.

Best wishes to you,

Nancy T.

[Cithmore]

Pardon the typo the dilantin I take has me in a real fog.

[Dee52]

If you do have Trigeminal Neuralgia and don't have much pain you should thank GOD and I do mean thank Him.  They described TN in the old days as the sucide disease.  Just to give you a hint of how most people suffer with it.  I'm in no way saying you don't have TN I'm just saying thank GOD you don't have the pain most feel with it.

It sounds like you have more than one thing going on expecially, with your vibrating in your lower left leg.  Don't give up on trying to find a good doctor~you have so much going on in your body don't delay go to a  doctor.  Start with your family doctor they usually can send you to the right doctors.  I hope the doctor on this forum takes the time and reads the extra problems you have and posts a comment.  
Good Luck!
Dee52

[Nancy T]

Thanks--do you mean that BILATERAL trigeminal neuralgia "does not often happen"?

I feel lucky that I don't have much pain with it, just occasional painful jabs. The crawling is annoying and the itching drove me nuts for a while!

On the other hand I have a lot of other symptoms, e.g. dizziness all the time, hearing loss, strange paresthesias, a vibrating lower left leg (like a motor running inside),  and periods where my feet wouldn't always land exactly where I meant to plant them, or when my "reach" was a bit short and I kept missing handles the first time I tried to grab them--weird stuff like that.

Good luck to you,

Nancy T.

[Cithmore]

Hi,
I have tri geminal neuralgia and mu doctor told me last week that TNG can be unilateral however it does not happen often to many of the 1.5%of 10, 000 people who get TNG.
Good luck

[Nancy T]

I had 4 brain MRIs (1999 to 2003) to rule out acoustic neuroma and MS; they all showed "small scattered" nonspecific lesions, i.e., they could have been MS but could have been due to migraine, high blood pressure/cholesterol, etc. The radiologist wrote that there was "clearing" of some lesions and appearance of others, but one neurologist said this could be due to different "slices," and neither neurologist thought the MRI findings significant.

Both of them talked about a spinal tap and one attempted it, but could not get any fluid out (I have lumbar scoliosis), and later said I didn't need one. Neither of them shut the door entirely on MS (which the first neurologist had brought up and all but told me I had, at my first appointment, even though I'd already had an MRI, originally read as normal, to rule out acoustic neuroma). But both said they "didn't need to see me anymore" after a year had passed.

So I haven't been back, as my symptoms have remained mild or at least nonspecific (and the strong implication by one neurologist, and the PCPs etc. who read his reports, that I was a hypochondriac was too devastating and painful to risk again). The Lhermitte's really puzzled me, but the second cervical MRI (done by orthopedist in 2006) showed bone spurs "flattening" the surface of the spinal cord, so I presume that may be the cause of the Lhermitte's although the orthopedist didn't think so.

I did not have evoked potentials testing except auditory, which was "highly abnormal" on both sides on all measures, some of them double the standard latency (?). Acoustic reflex decay test was "consistent with 8th nerve disease" on the left, my sudden-hearing-loss side, although acoustic reflex itself was normal, I think. A couple of years ago I had some left-sided BPPV that was really weird because whenever I tipped my head to the left and the ceiling started jerking up and down, I would get a strong thumping noise/feeling in my RIGHT ear--which I know is not a normal part of BPPV!!

Blood tests in those years were all normal (ANA, thyroid, B-12, CBC, probably a few others). Office exams were basically normal. ENGs performed by otologist in 1999 and 2006 were normal.

The neurologist--a dizziness/hearing specialist--mentioned vaguely that the abnormal ABR "could have been a virus," but he never said anything about the face shocks and paresthesias. (We were focused on the dizziness.) In the end he said he did not know what I had, although he helped me find medications for the "fog" due to dizziness, at first Provigil, Ritalin, and finally Strattera which is a godsend!!

Do you agree that a virus could cause a bad ABR and the trigeminal-nerve symptoms? I didn't have any illness prior to the face shocks and hearing loss. Or could cervical bone spurs or other mechanical problem cause these? I have NO neck pain or stiffness.

[Michael Lim, MD]

Did your doctor perform any tests to check for MS?  

[Nancy T]

P.S. Is it possible that migraine can cause the facial symptoms I described? Can an unspecified "virus" cause them? Except for the painless shocks around my eye/nose/upper lip, which occur randomly throughout the day almost every day except for occasional "remissions," the patches of crawling or stabbing tend to last maybe 20-60 minutes on and off, then recur like that several more times through the day, usually for days or weeks at a time. Then they go away...and come back months or years later, in the same or different spot.