Please help/advise For the last year my symptoms have increasingly got worse. Started of being triggered now and then to now being triggered all the time by movement. I’ll go into more detail below. They are tinnitus, both ears but mainly right.
The main symptom is the worst it’s always on the right, I get this extreme pressure/pulling directly at the back of my throat, and towards the top and also right side of the root of my tongue, it’s very intense and causes me to jolt at times, if I don’t move it intensifies and is extremely uncomfortable, if I don’t move I feel like I will shut down, I have to get up and walk or lay completely flat, if it intensifies it can cause a tingly/pulling sensation on my right cheek and eyelid too…I don’t really know how to explain it… when this happens I also feel as though my hyoid is strangling me. The only constant symptom is my swallow feels strange, like the front outter part of my throat don’t move smoothly when I swallow and feels restricted. All other symptoms only happen when I’m standing/sitting up, not when laying down. They happen after walking, It also happens if I speak for a long time or if I move my neck around too much when I’m upright once I stop it will happen. It’s always after movement once I’ve stopped moving. But not when laying. I can not sit on any kind of transport as this makes my symptoms increase, I can’t get a car or train or bus . It’s really effecting my life. I’m not sure if this is eagles or something else. Like a nerve pinched after movement? Or a vein? I also get dizziness and heavy head feeling. Sometimes my armes feel a bit weak too.
Does anyone else experience similar throat symptoms? They are only relieved by laying down. I don’t have real bad pain, I do get some little pain here and there in neck but nothing significant. just this intense feeling that is unbearable. Over the last month I’ve basically been unable to do anything, I’ve quit working too. Any advice would be great please as I’m not sure what is actually wrong. I’m awaiting a neuro app but not sure what to ask for. Or could it be something else? Any advice would be great please 
I think you commented on one of the other threads about similar symptoms that @JugularEagle has so won’t go into too much detail…I didn’t get the throat/ tongue symptoms you describe, but I did used to get tingling all across my face, I believe this was the Trigeminal nerve being irritated by the styloid on my left side, & although surgery hasn’t completely taken away the pain I used to get before surgery, it has improved & I don’t get the tingling at all now. It does sound as if you could possibly have either hyoid bone involvement (quite a few members who have elongated hyoid bone processes/ cornu have had strangling sensations), or possibly calcified stylo-hyoid ligaments …
I did use to get a horrible sensation of almost like my brain being rolled up, I felt like it might even die, but mine was when I was laying down, & I’d have to sit up quickly, so the opposite of yours, it was caused by bilateral jugular vein compression. (The dizziness & heavy head feeling could be jugular vein compression symptoms, but laying down does usually make this worse) It could be maybe that the vestibulocochlear nerve is affected & causing issues with the movement, that’s just a guess…Arm weakness can be caused by the accessory nerve being irritated, it’s another common symptom.
Your best bet would be to try & get a referral to Mr Hughes at UCLH, and to push for a CT with contrast to be done to see if there are any vascular issues. I think only a consultant can order a CT, so it might be a wait…If you can’t get a referral to him then we suggest that you print out any research papers which mention similar symptoms and taking them with you when you see the Neuro, as you’ve discovered there is much ignorance about ES with doctors, but there are UK doctors that do treat it!
Here’s a link to the research papers category:
Latest General/Research Papers topics - Living with Eagle
This paper might not be that relevant to your symptoms, but it is by respected UK doctors, so if your Neuro or GP don’t listen to you they might take notice of this?!
Certainly push your Neuro for a Ct though if you can…
I get all of what you describe and I don’t know what I have done but I got it quite a lot when I first ever started having symptoms exactly 3 years ago. Since then I have had all of the sensations you describe on and off, sometimes I feel like I’m getting better only for it to start again. I haven’t been able to properly tie the flare ups to a cause over the last few years, I sometimes wondered if it was GERD because that seems to flare up around the same time, or something to do with looking at screens because I find not looking at a screen can make it better. I used to be incredibly active and now I can’t, I tried to go back to the office 4 days a week recently which involves riding my bike for 10mins to the railway station and back each day and this seems to have made my symptoms flare up. I’m currently sitting here typing this and my symptoms are the worst they’ve ever been, the right hang side of my tongue feels tied, I’ve got loads of pulling under my tongue and pulling down by my right ear. Yesterday, I went to put my coat in the cupboard and I reached up and something cracked in my throat and I couldn’t swallow properly for ages, then a little while later my family got home (I have a husband and 3 kids) and I had to eat and I ended up with my food sticking in my throat a few times which was awful. It’s like my hyoid can’t move properly. I haven’t been told I’ve got eagle syndrome, I saw doctor Hughes in London and he wasn’t convinced my symptoms were due to eagle syndrome, my styloid processes are 3.5cm right side and 3cm left and I have discontinuous calcification of the ligaments. I sometimes get tight suboccipital muscles on the right when all of this happens and eventually this tightness goes down my entire shoulder. I really don’t know what the answer is but just wanted you to know you’re not going alone with these symptoms.
I also seem to push my tongue and jaw forward a lot and also bite the back of my tongue, I can’t seem to find a proper resting place for my tongue or jaw. I’ve also noticed that I breathe quite shallowly sometimes and lying down and breathing deeply will make some of the tightness go away, have you ever noticed yourself doing this?
I’m really sorry Mr. Hughes dismissed you rather than offering to do surgery for your most symptomatic side @Skatkat.
I wish doctors would think outside the box more often & base their diagnosis on symptoms not just on what length the styloids appear to be on the diagnostic scans. As we often say here, which is also backed up in a few research papers, it’s not just the length of the styloids that can cause problems. It can also be thickness, angle of growth, how curved, twisted, pointed, knobby, etc they are that can be more relevant in causing symptoms than length.
Would you be able to see Mr Hughes again & make an appeal based on your symptoms & the physical features of your styloids & discuss that it’s not always just the length that determines symptoms?
I’m on the waiting list with the NHS, I’m going to contact my health insurance and see if I can have another appointment with him sooner. Fingers crossed.
This strangling issue is a big problem for me but there are so many wild symptoms. For example, for some reason my tongue goes forcefully to the roof of my mouth with A LOT of pressure that has to be bad for my jaw. I also feel like the tongue is too big. This could be anything or nothing but it does burn a lot.
I will say this to you. This week I have dealt with a lot trauma drama in trying to alleviate pain. For example, I went to Interventional Pain Management only to get nowhere because an ENT put a note in my file that I don’t have Eagle Syndrome which I then had to dispute. This has been a week of spiraling. As I spiral my symptoms get worse. Are they really worse? Is it just in my head? Or is the stress affecting my body and my symptoms. I can’t answer that but what I can say is that I think it is important to find some method to try to help you relax. Easier said than done. 100 mg of Gabapentin helps me sleep and deal with the feeling of being strangled. I am afraid to take more because of all the horror stories but because I have been spiraling I am going to try more this weekend just to knock me out.
There is a Stock Trader called Scott Redler on Twitter who tries to say motivational things. Today he said something about being thankful you are above ground and have 10 fingers and toes because if you lose one you are really going to miss it. I try to say every day what I am thankful for in the universe.
When you “spiral” (i.e. stress) your cortisol level ramp up in your body. Cortisol is part of your fight, flight or freeze hormonal system (closely related to adrenalin). When cortisol levels are high so is inflammation which in turn causes an increase in symptoms. Thus it’s safe to say your symptoms increase is part of your body’s response to your stress level. I’m glad you’ve found ways to help yourself settle down & it’s great that Gabapentin is helpful both for sleep & symptoms reduction.
Your tongue symptoms are probably being caused by your glossopharyngeal nerve which is one of those frequently irritated by elongated styloids. I also had a tongue symptom but it was different. It felt like something was pressing hard on the back of my tongue but only on the left side. That stopped when my styloids were removed.
The strangulation feeling can sometimes be caused by the greater horns of the hyoid bone (AKA Hyoid Bone Syndrome). We have a couple of specialists on our Doctors List who deal specifically with that - Dr. Dewan in Louisiana & Dr. Chhetri in Los Angeles. If you can post 3D images of your CT scan when you get them, we can give an opinion re: your hyoid bone if it’s in the imaging.
This is EXACTLY what happened to me at the start of my symptoms. The tongue is also a stabiliser for the neck and at the time I’d spent a lot of time with my head bent down, weakening the back of my neck. I was also quite stressed emotionally which also results in these tongue issues. Over the last 3 years all the “stress” symptoms have gone but I’ve still been left with these tongue symptoms which is why I’m going to try to see Dr Hughes again too ask for another opinion (have had wisdom teeth out, completed CBT for anxiety which I now don’t have, lots of other things since first appointment).
EDIT: 3 years down the line I am now not pushing my tongue to the roof of my mouth, instead I push my tongue forwards and bite the sides of it at the back, I think I’m essentially using my tongue as a splint. Things get better when I lie down because I can relax it, but when I stand up it happens automatically.
You mentioned that cycling seems to have made your symptoms worse- I loved cycling before ES but have had to give it up, I think that hunching shoulders over the handlebars & head forward position aggravated ES. I did end up with a disc prolapse C5-C6 which then I think shifted the structures in my neck to cause vascular symptoms. It could be the neck positioning which is aggravating your symptoms, unless it’s an intolerance to exercise- if the vagus nerve is affected or there is any vascular compression maybe that’s part of it too?
I hope that you can persuade Mr Hughes to help you- he has seen another of our members privately, @Hema , & offered to do hyoid resection if I remember right for her, so if you’re ligaments are calcified too he should be able to remove them. Maybe if you can explain the steps you’ve taken to rule other things out, like your wisdom teeth, then he might revisit his decision? 
I really hope so, I’ve ruled quite a lot out now so I’m hoping I’ll get to see him again soon and explain everything. I do seem to have an intolerance to exercise, I used to be able to do what I wanted whenever I wanted but now even doing say 10 body weight squats or anything todo with toning the muscles is just a no-go, I end up with stiff muscles that just never let up and a whole host of other symptoms. It feels a bit like my muscles are slow to react as well. Cardio is a bit better as long as I don’t do too much, I seemed to be ok doing two days a week in the office but I switched to four days and had a massive flare up of symptoms, now I feel like I’m back at square one.
What a frustrating cycle for you, @Skatkat! I also had to cut back on exercise when my ES symptoms were at their worst. For those of us who are used to being active, ES symptoms sure are a killjoy! I hope your next round w/ Mr. Hughes goes better. Stand up for what you need/want & don’t let him rush you out the door w/o at least some answers or a solid referral.