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Odd cheek/temple sensations

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Old 04-21-2017, 05:41 PM   #1
Join Date: Apr 2017
Location: Washington, DC
Posts: 1
pinballpatient HB User
Unhappy Odd cheek/temple sensations

I've been diagnosed with TMJD for half a year, but I don't fit the typical patient profile (is there such a thing?) My user name comes from the sentiment that I feel like a pinball being bounced back and forth between different specialists, so with that said, I'm hoping to see if anyone else has been down this path before. I'm mid-thirties/male.

I have this odd sort of "pulling" or "pressure" tension/sensation in my temple. It feels oddly similar to a spasm/cramp, but just off the outer side of my eye. Usually it's my right temple, but sometimes it's both. If I press my finger below my right eye, or do some jaw movements, I can make this happen (unfortunately, it also happens on its own). If it's really bad, even blinking on that side feels a little weird. A neurologist suggested this is probably muscular and pointed to sore spots on my neck and jaw.

I've also been getting this thing where my cheeks feel taut, or stretched, almost like maybe they might be swollen except when I look in the mirror, they don't appear that way and aren't red or tender to the touch. Sometimes it feels like my skin is drying like after a shower, but it's not wet. The temple/cheek stuff starts out mild but tends to get worse as the day goes on. I do have an occasional twitch around an eye or my mouth, and most randomly, this all started with tingling sensations around my chin/cheek/neck (the Feather Fairy hasn't visited me for a while, but this, rather than jaw pain, was the first symptom that started me on this path)

I have an overbite and have been told that I have an "underdeveloped jaw", whatever that means. I've also been told I'm a grinder and wear a nightguard (upper) every night. I do get jaw pain and clicking and sometimes pain can be evoked by pressing on both sides where the jaws connect. If my lower jaw goes too far forward for too long, it will start shaking.

ENT believes they can rule out sinusitis and has told me my masseters and pterygoids are inflamed. Panoramic x-ray showed my right disc was smaller than the left but that everything seemed otherwise okay and that it could heal.

Sometimes I get a transient headache or minor phantom toothache that isn't real (dentist recently did a very thorough check including x-rays and confirmed everything was fine, said I take great care of my teeth). None of this ever happened until six months ago when I had an upper endoscopy (I was awake for it and clenching).

So this seems like it has the makings of a decent story, I have TMJD brought on by that stressful clenching and all these muscles being chronically inflamed and tense is causing all of this. I really, really want to believe that's all it is... and hopefully maybe find a way to get rid of all this tension and spasm!

Recently, the oral surgeon I've been consulting scared me by saying it could be trigeminal neuralgia or brain cancer or what have you, and that he should first have the neurologist rule those out. Now I'm stuck in this sort of purgatory where the oral surgeon and the neurologist never get in touch with each other and I'm left in limbo waiting for an MRI and a diagnosis that never happens. I DID have a head CT half a year ago with no significant result other than paranasal sinuses being somewhat congested.

The oral surgeon has me on 10mg Flexeril nightly - Two weeks so far, giving me dry mouth like crazy and about ready to drop it - at first it felt like it was taking the edge off the temple thing but it doesn't seem to be helping much. Could the Flexeril be contributing to my cheek stuff by messing with my salivary glands?

I've been on variations of between two and four Advil three times a day for a couple months after a flareup that has yet to end. Think this may be starting to give me rebound headaches...

Has anyone been through any of this before? Was it resolved? Did you get a diagnosis that you felt like explained it?

Any TMJ specialist recommendation for the Washington, DC area?

Last edited by pinballpatient; 04-21-2017 at 07:38 PM.

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