@kleider13 I'm the exact same and I've noticed it happening more frequently. I've tried looking it up so many times and this is the first time I've come across other people who have the same issue.

I’ve had this happen to me since I was in high school, first time it happened I was washing my hair in the sink. I started to panic but then I was able to pop it back in place. I’m 49 now, I’m on here today because it happened again last night in my sleep and I’m not able to pop it back in place. This happened on the left side, painful to swallow and also feels like something is pulling all the way up to my ear. I have also told my doctors about this and they told me they’ve never heard or seen anything like this. I don’t know what to do, but you’re right it’s getting harder and harder to pop it back in place. I was looking online to see what I could do to get it back when I came across this support group.

THIS HAPPENS TO ME. I’ve never met anyone with this same issue and I’ve never met a doctor or other person that knows what this couldn’t be. I’ve never seen anything on the internet either. This is the most hopeful thing I’ve ever found…just knowing other people go through this makes me feel so less alone.

During the day if I bend my neck weird (haven’t figured out a specific position that makes this happen), it usually feels “shallow” enough and I have a specific hand pushing/sweeping motion I can do to get it back in place. It literally feels like it clicks back but doesn’t make an audible sound. When I wake up in the middle of the night (which is rare but just happened a few minutes ago), it usually feels SO deeply dislocated it makes me anxious and I don’t know what to do to get it back into place. I almost started to cry but the flaring of muscles that happen when you start to cry was SO uncomfortable that I stopped. Wildly enough when I did this, whatever it was went back into place! I was shocked. Not sure if this is a helpful trick or if it was bc I was praying for a miracle at 3am. But it worked!

For reference, this NEVER impairs my swallowing or breathing. Like it’s not inside my throat. But it is uncomfortable to swallow (which is how I know it’s out of proper place when it happens). Doesn’t seem to affect me besides this discomfort which isn’t necessarily “painful” but definitely not something I’d want to just leave alone and see if it goes back to place.

Best description of location I could give is it feels like it’s in the region of suprahyoid muscles. Something that should be superficial but when displaced goes deeper into the neck. Feels like pressure makes it worse and pulling at my neck (almost causing suction) can sometimes help get it back into place. Really hoping just to KNOW what this is, to understand it better.