Five years ago I was diagnosed with trigemential neuralgia after face pain started and it did seem to match. however, as it progressed some things didn't add up like the pain crossing over both sides of the face.
Additionally as it went on and I began to pay more attention, I had migraine like symptoms.
Then as I began to pay more attention, I noticed it would falre up immediately if sitting on a soft couch or leaning forward, etc and the pain was also originating under my chin often, and extremely tight/tender/painful muscles on each side of the neck and even as it progressed over the years into the collar bones, and breast.
From the get go, I had told them it often started like a muscle cramp up the right side of back of neck and sometimes the occiptal nerve and up over the head like a spike through the occipital nerve and eye. But really perplexted and was ignored by neurologists is how I would continually tell them about the pain in the chin/thyoid area and how if i press on that pain, it would cause instant flare up in nerves in my face and a cold mask sensation across the lower part of my face like wearing a mask across my mouth ear to ear.
I get a clicking in the my throat when I swallow, sometimes when the pain flares up, it feels like something is squeezing my airway. If i Press on the area around just above my adam's apple, i get clicking and the pain all flares up instantly. When it flares up (even without pressing) it often feels like someone has shoved forceps through my skin into the soft area behind my chin upwards toward my mouth and is pinching them closed around the skin and muscle, etc between the points.
Sometimes the base of my tongue would spasm or even lock up. Often times when the pain is starting up it comes first in my teeth and I know the next few days are going to get really bad. And when it's really bad, the gabapentin, baclofen and tramadol do very little except after I've taken several doses by the end of the day and go to sleep.
When I came across hyoid bone syndrome, I couldn't believe it – every symptom I've tried telling neurologists about is listed there to the letter. And yet, no one seems to know about this and so mentioning it to docs just gets me ridiculed or head scratching.
Is anyone aware of doctors that specialize in this or know anything about it at all? I have had an assault to the neck area before. I have been to TMJ doctors who said maybe a little but not enough to need a bite plate. I went to an ENT who stuck a scope down my throat and refused to do an ultrasound or anything and sent me on my way annoyed with me.
I have been going to neurologists for 5 years who just kep handing me meds for trigemenial neuralgia and saying "see you in six months." Once they tried an occipital nerve block which did absolutely nothing to help. The other wanted to crack my skull open and cauterize the TN nerve. But the pain originates in my chin the most and then causes TN branch pain.
I've tried hunting down doctors who have written articles about hyoid bone syndrome only to be told they've retired or specialize in something different.
Appreciate any help or leads.