My story and symptoms, misdiagnosed as TN, ATN, wondering if this could be Eagles

Thank you so much for the valuable advice, I’ll look into all the options. I’m currently in Kentucky as my husband has a traveling job so me and our 3 year old son are with him. I did call the office of Dr.Hackman today and asked my PCP to fax some paperwork over. He’s booking at 1st of January but I’m hoping to get on the cancellation list.
I have tried various nerve meds 6 years ago when it all started and gave them a long enough time to work but got nothing except side effects in return.

If you don’t mind me asking is there a link to your Eagles story? I’d be interested in reading about your symptoms and experiences on your journey with Eagles. Thank you again for all the support.

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I’m afraid my story is dotted about all over the place! I’ll give you a brief version- I had bad tooth & jaw pain, coinciding with a salivary gland stone, had a new filling done & investigations, I was very lucky that a junior doctor spotted the elongated styloids & diagnosed ES. So for me it was pretty quickly diagnosed, although when I joined the site & read up on symptoms I realised I’d had some for years without knowing. I had a bad whiplash injury nearly 30 years ago which I think caused my ES. I was prescribed Amitriptyline which helped with the nerve pain in my jaw, so I felt I could live with the symptoms & didn’t pursue surgery, but a year later I had a prolapsed disc C5-C6, which I’m guessing shifted things in my neck a bit so I started getting vascular symptoms. I had bilateral IJV compression (diagnosed by a CT with contrast) which caused some intracranial hypertension symptoms (dizziness, off-balance feeling, difficulty concentrating, head & ear pressure & some weird sucking/ brain rolling up feelings!) & that was a bit grim, so I saw a UK surgeon I found out about on here & had the worst side done first. That resolved alot of the symptoms, & a year later I had the other side done. The vascular symptoms have pretty much all gone unless I get very stressed, I still have a bit of trigeminal nerve pain but the Amitriptyline helps with that, so the surgery has been great for me!
Dr Hackman has done lots of surgeries, so would be a good bet if you can see him. Alot of doctors will only do one side at once because of the swelling, but Dr Hackman does both sides at once, & those who’ve had it done seem to have done well, although temporary issues with the facial nerve can be quite common.

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I’m so glad I’ve seen your post because I get quite a lot of this too and I have been suffering with it for 2 years and only to be told constantly that’s it’s anxiety, stress, tension, depression. Mine did start after a huge anxiety meltdown and some of my symptoms have gone but the pressure when leaning the head back that you describe is still with me. What I found out via my dentist is that I am doing what he called “posturing” with my jaw, I do it without realising, I sort of move my lower jaw back and forth and I also move an tense my tongue. This is a symptom of stress/tension and can cause quite a lot horrible symptoms like the ones you’ve described and I have caught myself doing this when the pain is bad. I am waiting for a referral for a CT scan (I am in the UK) because I believe I might have Eagle as well. However I’m also aware that muscle dysfunction in the hyoid area can cause similar symptoms, but I need the CT scan to know either way. Sorry about the long reply, it’s just that a lot of your symptoms are very similar to mine and I’ve never seen someone mention the back of the head thing before so I just wanted to say you’re not alone and these random symptoms are so frustrating because no one believes them or takes them seriously. I just keep being told anxiety or attention seeking.

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Thank you for telling your story, I appreciate it. It’s so fortunate that you were able to get diagnosed so quickly. I can’t imagine how people go multiple years with severe symptoms without resolution or improvement. What makes it more difficult is the variability of symptoms that makes you constantly question whether it is truly Eagles or something else. Craniofacial disorders have so many overlapping symptoms that sometimes it’s hard to tell them apart. And in the case of Eagles surgery is the only definitive tool to diagnose which is a pretty radical diagnosis technique.
So happy you were able to achieve a level of relief that lets you lead a normal life. I can’t wait to be in the same place, I’m not even hoping for a full resolution of symptoms but enough to sustain a life where I can work and be a mother I need to be to my little kids. In the present state it’s impossible. Hoping for the better, fingers crossed :crossed_fingers:

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Hi Skatkat, and thank you for your comment, sorry you’re in the same boat with the symptoms and no validation from doctors, I know this too well first hand where it’s blamed on anxiety, stress etc. Although my symptoms did start amid horrific stress I don’t believe it is right to blame physical symptoms on emotional distress. Yes anxiety and stress do intensify or sometimes trigger physical response but they can’t be responsible for structural issues within the body. If there’s a link to your story and symptoms I’d love to read about it. I hope you get your imaging done soon and a proper diagnosis. You deserve a pain free life. Big hugs to you :heart:

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Thank you. This is a link to my story, although this is only a summary really: Newbie, my story, CCI, AAI, eagle and anxiety

Mine started in 2019. I had a massive panic attack and went to hospital because I was struggling to breathe and felt like I was choking. Since then, some of my symptoms have gone as I’ve calmed down (I had burning feelings in my skin, and very tight muscles) Some symptoms I’ve just got used to and know how to cope with them (the head pressure at the back of the head, vertigo, neck tension, popping in my nose, intermittent slapping noises when I swallow, popping noises in my throat and soft palate, random pains in the hyoid area) but I’d love to go back to my normal self. Before all of this I was really active, I ran 5k twice a week and went to the gym. Now I struggle through the days with random symptoms. I’m now calmer than I’ve ever been, I’m really lucky not to have any stresses in life at the moment but still have symptoms so I can’t accept the anxiety diagnosis. Neck issues can cause anxiety and after ruling out CCI/AAI, I’m convinced that Eagle is what it is.

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Thank you for sharing your story. I do see we share more than one similar symptom. Especially those weird sounds that throat makes with talking or swallowing, I can’t adequately describe the sound except clicking/clunking/popping. I know healthcare in the UK is much more difficult to navigate with the referral system and such but I truly hope you get to the bottom of this and get the validation you deserve. This is no way to lead life in constant anxiety and pain. I know exactly how you feel, stay strong :heart:

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Thank you, I hope you get treatment and relief from it too.

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@Elena & @Skatkat - clicking, clunking, popping when swallowing is often a sign of calcified stylohyoid ligaments either along w/ elongated styloids or w/o. We’ve had a few members whose styloids were normal length, but their stylohyoid ligaments had calcified extensively down to the lesser horns of the hyoid bone. This calcification tethers the ligaments & prevents normal movement of the hyoid bone thus they can’t move freely as needed when you talk, sing, cough, sneeze, breathe, swallow, etc. As a result you hear & feel the clicking, clunking, popping because these body parts that are meant to move freely can’t.

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Thank you for this information, it makes so much sense. I would often feel like a loony describing this symptom to the providers I was seeing but none of them had a clue as to what it might be, neither of multiple TMJ specialists, orofacial pain specialists, neurologists, not even any of the several ENTs I saw back home in Nebraska. This gives me even more hope that I’m finally on the way to a proper diagnosis which is essential for the right corrective treatment. Differential diagnosis is what all Craniofacial pain specialists need more training in that’s for sure. Thank you again for this valuable piece of information.

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Hi @Elena , I do suffer from facial pain & pressure around cheek/masseter muscles. It feels like that my cheeks are being pulled down and my temples squeezed usually at the end of the day and when I am upright (driving or standing). I also have the clogged ears (feels like I am under-water) but then I have bilateral mild to profound hearing loss. This is the most bothersome symptom and my face looks droopy when it is happening (makes me look like old). I wonder if increased pressure in the head is somehow affecting the mandibular branch of trigeminal nerve or whether a CSF leak is causing traction of the TN. BTW, I do not have any electric shock type sensation that is the hallmark of TN.

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I never had the electric shock sensation, had the Type 2, constant aching, burning, boring pain…

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@Jules Did your cheeks droop? I mean since I was hit with this, people think I have aged. My face looks old and the skin sagging above the cheek. Not sure if this is related to constant masseter muscle spasms.

What is so weird is that, when I run on the treadmill for 20 minutes, the pressure pain on the cheeks and the pulling down feeling lessens. So this is the mystery?

Hi @KoolDude and sorry you can relate to my symptoms. My pressure in more in the cheeks and feels like a hot poker is pressing in at its worst, it’s unbearable especially of combined with a headache, sometimes I can’t tell where the face pain ends and headache starts. Pressure spreads to the eyes with headaches. For some reason sitting (on the couch or at the table or while driving) makes the pain worse, I feel better when I’m up and moving around. My ears don’t feel clogged but I do have hearing loss same as you and different sounds, like popping, crackling, sounds sensitivity, reaction to my own voice or outside noise. I’m certain that either styloid or the calcified ligament is somehow irritating maxillary branch on the trigeminal nerve, especially in my left cheek where it all started 7 years ago but back then I felt it in the teeth. I don’t have electric shocks either but occasionally I do get sharp stabbing pain :persevere: Are you planning on having a surgery?

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Hi @Jules, I’ve never had electric shocks either, but have had occasional sharp stabbing pain. Otherwise it’s constant or near constant burning pain. I wouldn’t call it boring lol but it’s not entertaining either :joy: It’s searing at its worst and I’ve didn’t resorted to applying cayenne pepper extract directly on my gums and capsicum cream externally to offset the nerve burning :fire:

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I have gone through left side Styloid removal in Oct 2022 and a month and few days ago (Oct 18, 2023), I went through C1 shaving. I still have not seen dramatic improvement of my symptoms. I am at loss now as to what could be causing this. Is your hearing loss bilateral or unilateral? I thought you only have hearing loss in the left side.

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@Kooldude - I’m very, very sorry your symptoms are ongoing after all the effort you’ve made to take care of the left styloid & IJV compression. Have your totally ruled out that the right side could be causing some of the symptoms you still have?

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@KoolDude Audiology report showed bilateral hearing loss, left worse than right but it’s mild, I can still hear just fine but if I plug my right ear I can tell the difference immediately. For example at night in bed if I turn my head to the right I can’t hear the air vent/furnace at all, so it has to be certain frequency because otherwise I can hear fine with both ears. The left one is also the one I have all sorts of weird sounds (intermittent, not constant). I’m sorry to hear your surgeries haven’t helped you. I assume you have already ruled out TMJ issues? As they can cause symptoms similar to ES including facial pain (both muscular and nerve ones).

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I have not ruled out TMJ. But my pressure on the jawline under cheek does not appear to be mechanical. It comes and goes and it is worse when I am tired or stressed. It does not click when I open the mouth either. It is also mostly on the left side where I had the Styloid and C1 trimmed.

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I have not but my right side is way smaller than the left so I expect the blood flow to be much less. I assume it is only carrying 10%.

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