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,