That’s really interesting- obviously not great for you- sounds like a real possibility that the tension could’ve aggravated tissues and maybe caused calcification…
It never occurred to me that a tongue tie could cause forward head posture but makes sense! I’m surprised you weren’t diagnosed as a baby or toddler. Most of the time severe tongue ties are taken care of at a younger age. I’m sorry you were older & are now having to deal w/ the consequences of a long-term tongue tie.
@F_t Wow, yea it sounds like we are experiencing the same thing! I am so sorry to hear that, I wouldn’t wish this on my worst enemy! If I was offered the resection of hyoid bone/thyroid cartilage I would do it without a second thought. I really think that is what’s causing the symptoms. If I hit a dead end with the neurologist I will be seeking out a doctor that can do this for me. I hate that basically all the treatments are experimental though and you almost have to convince them to do it.
Does the click move around and change for you depending on how you hold your head? Like most of the time for me I feel it right under my chin on the left, but sometimes it feels like it’s happening lower down almost near my sternum, sometimes it will click in the middle and then the worst one is when it feels like something whips me in the throat from the right side. The globus sensation is also HORRID and makes me dry heave uncontrollably. This is no life. I cannot imagine dealing with it for 8 months 
it’ll only be 3 for me next week and I wanna tear my head off and throw it across the room lol. Keep me updated on what they decide for you! I would love to hear that you feel better after your surgery! We deserve relief from the awful click and the pain!
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@campsay I had my wisdoms out 8 years ago and I just finished my 2nd round of ortho a few weeks before my symptoms started. Tonsils are still in tact though, never had issues with them either!
Could it really have been from the orthodontic work 
@Clarebear if you don’t mind sharing, what is your treatment plan for your GPN?
I’m currently on 300 mg of carbamazepine morning and night for a total of 600 daily. It does help with the pain but I DO have breakthrough pain spells regularly. My neurologist wants me to consider a microvascular decompression but it sounds really scary.
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@Clarebear I’m sorry to see you still get pain often 
if you decide to have the surgery, I hope it will provide more pain relief. My PCP started me on carbamazepine 100mg last week to see if it could help hold me over until I see the neuro. I take it 3x daily. So far it’s barely even touched the pain.
Do you also get weird sensations in your throat like the clicking when swallowing?
The nerve pain medications do take a while to build up in your system enough to help, so maybe it’ll start working for you soon @a_catindisguise
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It could be too low of a dose OR you might not have GN. I’m so sorry you’re uncomfortable! I don’t have the clicking sound but do have odd sensations all the time.
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Front left side for me too. Yep, i reckon we have the same for sure. Depending on how i hold my head it may move slightly, and yeah pretty much the same locations as you. When you look down does it feel further down your neck?
I think that at about the 3 week mark i was about to rip my head off as well. Had to go on valium to calm me down. The species all told me it was in my head and the valium would fix me. I was rather floaty for a week there but kept on clicking. So turns out it wasn’t just in my head. Go figure. But 8 months on its still frustrating as anything, just not to the rip head off point. You will manage too, if that is what you have to do. One day at a time. But i do hope you get yours diagnosed sooner.
I’m happy to have you DM me if you wanted to ask anything. But my next specialist appointment isn’t until August. If you’re looking for a surgeon, i know at least one who is willing, and maybe a second one pending my appointment! But i do live in Australia though so i suspect it will be a bit of travel for you! 
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I also had symptoms similar to yours. Have u had a CT of your facial bones? I had that in November of 2021 and report showed correlates to Eagles Syndrome. I saw a TMJ Specialist (I was diagnosed with that in 1985). Many treatments were tried for TMJ to no avail. The TMJ specialist I saw in August, 2023 who did numerous testing and results also showed correlates to Eagles Syndrome. Did my research on Eagles Syndrome and found Dr. Ryan Osborne in Los Angeles. Contacted his office after reading a lot of testimonials. Sent him medical reports and he did diagnose me with Eagles Syndrome and not TMJ. He specializes in Eagles Syndrome Surgery. He will look over your medical reports and if you do have Eagles Syndrome he will verify that to ease your mind.
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TMJD symptoms have been known to reduce or go away after styloidectomy(ies). I had that experience even though my TMJD is fairly advanced.
@Cheryl48 Hey! I appreciate your input so much. I did have a head and neck CT done and it was not consistent with Eagle Syndrome according to the radiologist and my old ENT. I was really frustrated upon finding that out because I didn’t know what else it could be. Then I found out that Hyoid Bone Syndrome can produce the same symptoms, so I am looking into the possibility of that now. I posted my scans in another post on here, feel free to take a look! My styloid process does not seem to be elongated and there’s no evidence of calcification of the ligaments either. However, me and some of the lovely people on this forum have noticed my hyoid bone seems to be elongated and very close to my spine.
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@F_t Yea, I live in America. Although I would love to come visit Australia, maybe under better circumstances 
I’m so happy I found someone that has the clicking like me! I hate that we are both going through it, but it does help me feel less crazy and less alone. I’m glad you found a medication that helped to calm you down. I am still looking for mine. I’ve been on Lorazepam for years due to an existing diagnoses of anxiety disorder. Im also on an SSRI for depression and it’s helped me manage until this started happening. I’ve also tried muscle relaxers that didn’t help and I’m still taking the nerve pain medication trying to see if it will build up in my system and take some of the pain away.
Seeing that you are still fighting after 8 months gives me the motivation I need to keep going. I will never give up until I am treated! Thank you for being open to talking with me privately, I may take you up on that! I hope your appointment in August goes well!
Hugs from the USA 
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Another throat clicker here. It just started last week and got diagnosed with ES and also have an enlarged hyoid. Needing surgery as well😩
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@Maddy wishing you the best of luck do you have a surgeon yet?
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Trying to get scheduled with Dr nakaji in az for the styloid and his opinion on my clicking! I’m hoping they can do some sort of scan and watch it happen to see where it’s rubbing.
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@Maddy I always wished I could see exactly what was rubbing too! I was diagnosed mostly by exclusion but she was able to take measurements from my scans too and that’s how it was decided. I was a weird case in that my styloids and ligaments were not involved.
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Hi I read your story. Wow. For the last 3 years I’ve been dealing with what I thought was and have been told was tmd muscle dysfunction and pain due to night time clenching. Over the last 6 months noticed my neck is stiff meaning limited motion turning my head. Especially to the left. I pulled my neck and it’s never been the same. Since December 2024 I’ve noticed that when I swallow usually during sleeping my throat on the right side feels bruised or like strep. I tested swallowing my head turned left and there’s no pain then I turned my head right and swallow and there seems to be a lot more muscle engagement in my whole Adam’s apple and muscles move up and there’s an ache. Kind of triggers what they now call my post traumatic neuropathic pain. I do these my functional exercises and I’ve been doing them because it’s good for TMD chin, tucks and tongue to the roof of the mouth and open the mouth and side side jaw side to side and I thought I might’ve irritated some of the muscles in the neck because of those chin talks, cause I wanna do a chin talk. It hurts my neck inside my neck same area. Also I do the Latore scapula stretch to help with movement left and right and it helps, but that might be irritating so I’m kind of grasping at straws. I also scrape my tongue pretty regularly after I would brush my teeth and I do it aggressively and so I’m not sure if the tongue sticking my tongue out and scraping the tongue could irritate the throat, so I’m kinda like don’t know what to think. I want to see a ENT in December talking about that showing how my right engages more than my left when I swallow when I turn my head, left the right how the Adam’s apple and the neck muscle is just engaged completely differently when I have my head turned right she looked through my nostrils and looked at the throat and said there’s nothing in there blocking it so you’re good there if you have any issues come back but that’s about it. I’ve rescheduled for another appointment. I’m just so frustrated. I’m using voice to text so I hope you understand what I’m saying. Thank you for any response.
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It does sound from your profile as if you could have Trigeminal Neuralgia- the Trigeminal nerve is commonly affected with ES, & can cause pain in the jaw & teeth, lots of members (including me) have had dental work done thinking it was the teeth but it doesn’t go away…there are nerve pain medications which can help with that. Using the tongue always set off pain for me before surgery, lots of members have trouble talking etc. It could be that you have a calcified stylo-hyoid ligament one side which would affect your swallowing & how your Adams apple looks.
If you see the same doctor, you could push for a CT scan to see if you’re styloids are elongated, or otherwise make an appointment to see a doctor from our list who knows about ES? Here’s a link:
Doctor Lists – no discussion - Symptoms and Treatments / Doctor Information - Living with Eagle
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