Facial Pain, Numbness with Chronic Neck Pain and TMJ

[CrVala]

   Hello,
I am a 24 year old female with TMJ and chronic neck pain.  I have been getting treated for the TMJ for a year and half, though I've had symptoms for it since I was 10.  I've been seeing a chiropractor for 4 months when my neck pain got worse instead of better like my TMJ doctor had told me.

For the past 5 months now, I have been having pain on the right side of my head, eye, eyebrow area, eye socket, cheek, and right side of the nose.  This is also the same side my neck pain and jaw clicking occurs.  The pain is deep, achy, and at times throbbing, except for the on the cheeks, which can sometimes feel like a stabbing at the top of my cheek bone or the bottom of my eye socket, can't tell which it would be.   I also feel twitching sensations at the tip of my nose and sometimes in my eyelid.    Occasionally my cheek will just go numb, as if it's gone asleep.  It will stay like that for about 5 minutes, and I can still move my face when it happens.  

The most prominent pain is my neck and eye.  The other pain comes and goes (though still occurring everyday or every other day), but the neck and eye pain is constant and both in very specific spots.  The eye pain is in the upper corner, right where the eye socket meets the very top of the nose, where that curve is.  And I often feel it in my eye in the inner corner, when I move my eye that direction.   It hurts more when I touch and put pressure on that spot, as I've compared to what happens when I put the same pressure on the other eye's corner and it doesn't hurt there at all.

I should also mention that my eyelid is drooping.  I'm not sure if its considered the eyelid or part of the eyebrow area, but it is the skin directly below the eyebrow and directly above the skin that actually covers the eyeball.  It started drooping  very gradually, starting almost a year ago on the outer corner of the eye and now the drooping has spread full across the entire eye area from the outer to inner corner,  making that eyeball appear like its sinking down my face.

This is all extremely hard for me to deal with as I don't have health insurance and most of the doctor's I've seen have not been able to do full testing on me because I can't pay for it.
I've seen an opthamologist who just assumed it was allergies, did no tests, and just gave me eye drops.  When I came for a follow up 3 weeks later with my symptoms of course not improved, she said the same thing and gave me more eye drops.
I've seen a neurologist who told me that the appearance of my eye must have always been this way and I never noticed, and to do lighter less aggressive form of stretching so the neck isn't always in pain.  She also recommended I come back after I get insurance so I can get an MRI.
I saw an ENT who did a CT scan but found nothing wrong with my sinuses.  

So after having spent $800 on these doctor visits alone, I just don't know where to go next.  I was trying to save money by skipping a primary doctor (that I don't have anyway) and go straight to a specialty.  But now I don't know what specialty to go to.  I also would like to know how lower income people and students are able to get an MRI without paying full price.  

I truly appreciate any responses. thanks alot.

[Holly23102]

Just wondering if there is anymore people that can shed any light on this??
I had my MRI on the 14th. Still not got my results back. I guess no news can only be good news right?!
I had been almost pain free for a few weeks, despite a few headaches on my right side and except my right eye which almost constantly hurts. But tonight out of the blue the pain came back again, the right side of my face, my right arm and leg. The pain in my knee and ankle joints was excrutiating at one point. Its almost gone off now but my face is stinging around my right temple and eye socket.
When i feel like this i am almost too afraid to sleep. Just in case i don't wake up....or i wake up paralysed.

[emariab]

I have had many of the same symptoms on the RHS.  Mine started in my right eye. I went to a opthamologist.  My eye pressure was 60.  VERY HIGH!  Treated with prescription drops (including steroidal)   My original diagnosis was SECONDARY glaucoma because the pressure and inflammation was the symtom not the problem   She ordered several blood tests and chest xray to rule out various autoimmune diseases.      Recently saw a uveitis specialist (referred by opthalmologist).  The specialist ordered more autoimmune tests and HIGH RESOLUTION CT scan of chest..  Original xray showed small granuloma on chest.   We are currently ruling out more autoimmune.  The focus seems to be ruling out sarcoidosis.    Some of you sound like your other symptoms are the same as mine.   I have also started having really bad TMJ right side.  Dentist doesn't see any abscess, etc.   I just read that sarcoidsosis can affect the TMJ joint.     All my problems are on my right side - from the armpit to my head (sinus, eye, cheek, headache, etc etc)  After my next visit to the uveitis specialist, (reviewing the tests) she will be referring me to a rheumatologist. Hopefully my problem has helped someone here.    Make sure your rheumotogist or GP has all the test results from every doctor, dentist, etc that you have seen.   Use doctors that listen!  Good luck to all of us!

[Micki552]

I as well as you all have been experiencing these symptoms... it started about 8 months ago when I was told I had TMJ. After doing an exercise for my TMJ all the head problems seem to come on.. At first I was dizzy all the time my head was full of pressure and headaches after going to the doctors the thought it was allergies but not so my head became worse having sharp dull pains, warmth sensations etc, I had all the tests done CT, MRI, bloodwork, nerve tests and everything came back fine except I was told that I had some small cysts in my sinus cavity so they gave me a nose spray and that was that.. I was told that I may be experiencing tension headaches because I also had tenderness with my head it hurt to even wash it...  needless to say now I am having like tickle/twitching feeling in my nose, cheek, chin, eyes, it feels weird. I just want to feel better and feel normal again.. could this all be from TMJ and tension?? I don't know anyone have idea's please let me know!

[AlishaS]

I have been having these symptoms too & am very frustrated w/ the docs for always saying "everything looks normal"!  Well I'm sorry, but I don't feel normal, so something obviously must be wrong!  On one of the many MRI's I've had recently they show a "Mild benign Cerebellar Tonsillar Ectopia w/o Chiari 1 malformation".  They don't think that it could be causing all of my symptoms though (debilitating HA's for over 3 wks now & horrible dizziness where sometimes I can't even walk & last few days tingling in my leg).  My MRI shows the bones in my neck are extremely straight & they're supposed to be curved.  I went to a chiropractor who specializes in putting curves back in peoples necks.  He told me he feels certain that once I get the curve back in my neck my symptoms will go away!  He said give it 3 months of twice a day physical therapy program called Pettibon.  I have just started this program & don't have any results yet, but to me, it's worth a shot b/c no other docs have any ideas on what could be causing my severe symptoms!  I'm extremely frustrated, but am holding on to this hope that the Pettibon program of Chiropractic will help save me!

[Raisinhead]

I have had varying degrees of facial pain, headache etc on right side of my face for many, many years.  (started in teens, now 67yrs old).  I have been the specialist route and diagnosed as migraine years ago with the numerous drugs prescribed.
Today, my GP suggested Lyrica.  Have any of you tried Lyrica?  If so, has it helped reduce the pain and do you feel comfortable with the drug?

Eileen in Canada

[eb2003]

Jesus, this is not encouraging.  I hurt my neck about four weeks ago exercising and believe that I may have torn a ligament in the back of my neck- since then I have had swelling at the site of the injury, numbness in the jaw and face, roof of the mouth, numbness on my left side, fingers and foot, difficulty focusing, headaches, trouble with my balance, etc.  I have had a neck MRI, a brain MRI with contrast, an MRA of both the head and neck with contrast, an ultra sound on the arteries in my neck, a ton of bloodwork, and visits with an opthamologist (2), a neurologist, an orthopedic, 2 GPs, all test results normal. It's a nightmare, I don't remember how it felt to wake up feeling normal.