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Hyoid Bone Syndrome
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.
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I found this thread 4 years later, and I'm kinda in the same boat. My holistic chiropractor made a comment that my hyoid bone keeps shifting. This started the same time my TN symptoms started. I mentioned it to my neurologist and was redirected quickly. Did you ever find someone to check it out?
I had a neck/throat click for 2.5 years.
I adjusted my own hyoid (omg the pain) and click is magically gone.
Hello @divinityrose
I just found your post from year 2020, after days of researching what it seems to be exactly what you were/are experiencing.
Did you ever find the correct doctor to help you? This is what I'm trying to figure out myself, which kind of doctor to go to. The pain debilitates me 1-3 days straight.
Just to add to your findings, I have noticed the following:
1. I'm pretty sure it has something related to the hyoid bone because every muscle attached to it hurts when going through it, chin area, area between the neck and shoulder, tongue, throat, clavicle, high in the neck, etc.
2. It will flare up if I wear a sport-bra which has its straps closer to the neck, rather than a normal bra that has its straps closer to the shoulders. Same thing applies when wearing a crossbody purse, the strap sits closer to the neck. (Affecting the Omohyoid muscle I believe).
3. It will flare up if I practice mouth Mewing. I began to do so because of a Tongue Thrusting issue, and to correct my tongue position towards the roof of my mouth. I've been able to correct the positioning of the front area of my tongue, but when I focus on the back part of my tongue towards the roof for too long, the pain is sure to arrive in a matter of a few hours.
4. Deep tissue massages with a gua-sha on the neck (front and back), and chin area (under, over and sides), and all over the head (back, top and front) seem to alleviate the pain a bit.
5. Icing (cold packs) my neck, chin, and head also alleviates the pain for the following day.
6. I've learned not to do A.) Pushups (I won't do more than 10reps, 3 sets anymore, slowly and on my knees B.) Dips (Can't do 1 or I'll be in pain for sure) C.) Hold my baby on my side hip for too long, and when I do I try my best to align my body as much as possible.
7. I read that releasing a tongue tie could help. I'm looking into this right now. (I have a link to share)
8. I have my eye on a doctor in OK. www oklahomaccd com
9. I also read that releasing the fascia might help. (I have a link to share)
10. At first I thought it was a Cervical issue, but now I truly believe it starts with the hyoid bone. Pain then shoots all over towards my head, right eye, right ear, right neck shoulder area, chest/clavicle area, chin, and at times it will develop into a migraine. The pain will last 1 to 3 days straight. And nothing really helps it, just alleviates it a bit meanwhile, massages make it worse, only doing the gua-sha on my self is OKAY.
I hope to hear from you soon, and I hope this information helps you, me and everyone else going through this debilitating situation.
Thank you,
I began to notice that leaning forward with my back taut or back curved in poor posture would set it off.
Regular stretching and exercise to improve core strength and wearing a posture corrector brace for a while helped a lot. Also becoming aware of early signs so I could stand/move or correct posture. Things to relax like floats in tanks or massages. It dropped me from being on medications daily to maybe 2 or 3 times a month at a very low dose instead of the heavy doses that I had been on previously.
Stress and tightening of the shoulders, upper back etc or wearing things that press on the nerve bundles in the collar bone can set it off. The whole area and STM muscles get angry.
By the way. I was diagnosed with Ehler's Danlos Syndrome. I always knew I had hyper mobile joints but there is a lot more to it than that.
Things slip slightly out of place and mess with other things, cause chronic pain. Connective tissue is also too stretchy.
@ashlaurenr -
Please do not take this the wrong way, but you are going down the wrong path.
You need to assess your overall self, lifestyle and health. You can not spot treat your way out of tight musculature/tension/stress.
This whole “mewing” craze is ridiculous in my opinion. Making you hyper focus on an area bringing more awareness to it, causing you to think that is the issue.
Overall body strength, health, tension/stress is what needs to be adressed not individual bones or tongue placement.
You will drive yourself nuts if you keep chasing body parts in sections and not looking at yourself in a holistic approach to health and wellness.
Careful of the people who create these new “issues” that people pay money for to fix. Tongue ties? My goodness never knew so many tongue ties existed until people figured out a way to convince others that was there said “problem”. Where there is money to be made and issue will be created. Be careful. Address yourself first and be honest with how well you are taking care of yourself and putting yourself first.
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