When dealing with eagles pain, do the symptoms come and go or are they constant just different pain levels?
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Many members find that the symptoms come & go, sometimes for months at a time, & often without any obvious reason! But some pain can be constant; I had atypical/ type 2 Trigeminal Neuralgia so had tooth/ jaw pain I presume from styloid irritation which was fairly constant until controlled by medication.
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Im still trying to find a doctor to listen to me so i was curious. The symptoms i get usually come and go and were pretty well in the summer but as soon as the cold weather made an appearance all bets were off. Its been pretty rough since around Thanksgiving. I dont even know if its eagles or not just get the run around. But here are the symptoms i get.
Under ear pain
Ear fullness and itchy
Jaw pain at jaw joint and or under ear
Teeth/ gums ache top and bottom
Mucus or something caught in throat, varies from place to place sometimes I feel like it’s in my soft pallet, sometimes by my tonsil and sometimes can feel further down
Jaw crackling
Tongue pain down back and side
Roof of mouth is sore as well
Neck pain
Shoulder and upper back pain
Headaches
Sinus issues
Tired all the time
All on right side.
Went to ears nose and throat doctor last year did a scope.didnt see anything suspicious and they were over it. Tried to get an apointment again and ots not until June. So ive been searching for another one. Its exhausting.
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@Sara - all the symptoms you’ve mentioned have been noted with ES. Ear, jaw joint, teeth/gums & sinus pain are likely related to trigeminal/facial nerve irritation. Tonsils, roof of mouth & tongue can be from the glossopharyngeal & vagus nerves. Tongue can also be the hypoglossal nerve. Neck, shoulders & upper back pain are likely from spinal accessory nerve irritation. Fatigue is likely from your pain but can also be a result of the vagus nerve being upset. We believe there are 7 of our 12 cranial nerves that can be affected by elongated styloids &/or calcified stylohyoid ligaments.
@Jules has written a great post that goes over the affected cranial nerves:
I highly recommend you contact Dr. Cognetti’s ofc. He will do an initial virtual consult if he’s too far away for you to see him in person easily. He would be able to refer you for a CT scan. If you can’t make an appt. w/ him because you aren’t officially diagnosed w/ ES, ask his ofc if they can refer you to someone who will give you a referral for a CT scan which is diagnostic for ES.
•Dr Cognetti, Thomas Jefferson University Hospital, Philadelphia 215- 955- 6760 (Has done many successful surgeries on members). Only removes ligaments if calcified. https://hospitals.jefferson.edu/find-a-doctor/c/cognetti-david-m.html
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Thank you so much, hes about 3 hrs from me so a video conference would be ideal for the first one and then take it from there. I can try to see if i can get in with another doctor to see id they will do an updated cat scan as the only other one i had is 5 urs old and idk if they still have it anywhere sue to the hospital closing! I greatly appreciate all of this!
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My symptoms were worse in the cold weather too, I’m not good with cold & I think probably tensing up in it made things worse…
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Good idea to get an updated scan. That would help a lot. Make sure to have the referring doctor specify it’s for evaluation of your styloid processes, stylohyoid ligaments & hyoid bone. Ask for styloid measurements (though these most likely won’t be perfectly accurate).
@Jules noted her symptoms were worse in cold weather & many other members have noted increase in symptoms w/ cold, hot or humid weather. Try keeping your neck warm when inside or outside during the winter & see if that helps.
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Hey Sara !
This varies from person to person, but consider Eagle Syndrom as something Chronical. And it will depend wich off the types off ES you have, and how much it has developed.
Chronical illness often are constant, but there are days with little to almost no pain, but fatigue is often constant.
I’ve noticed that symptoms off ES, is often triggered by something, but for many off us it is constant wether it has been triggered or not.
For myself it is constant, but it is almost sporadic or periodic when the pain level is at it’s worst. When i talk about sporadic or periodic i mean that this is when symptoms can not be managed with painkillers or any other aproaches, i will be bedriden for days or almost sporadic for few hours, or suddently have to lay down and rest because off intense headpressure.
When i have days with little or no pain, i will feel slightly burning in my ears and jaw. My neck will be sore, and as for my shoulder blades. But this will be managable with painkillers or other aproaches, but i will be fatigued.
However i have learned that in my own experience that it will also depend on how far or how severe your ES have become. I have been dealing with it for seven years, at the start/outbreak off my symptoms it came and went often just a week with pain, and then it would stop for weeks/months. But the past years it has been constant and sporadic.
I have also learned that temperatures and seasons will cause great impact for some off us, wich i don’t have any great answeres to other than that i belive that since my ES is calcified ligaments, that it will be the same for people who have or is struggeling with Gout. People with Gout often have greater pain in winter time and bad weather(that is why some elderly people can predict bad weather).
For myself, it is very bad in the winter time and summer time but i have learned that spring and fall is when i have the best days(few to almost no days with pain).
As for many and myself, we are constant fatigued. This can be because off tremendouse pain or lack off propper rest and sleep, for myself i don’t sleep very good because off pain and periodic insomnia and sleep apnea. But when i started using aid for sleeping, i get much more quality sleep out off 4-6 hours sleep. Fatigue can also become severe because off the physcological affect ES have on your nervesystem, depression/anxiety often leads to fatigue as it did for me.
So my conclusion is treat your ES as a chronical illness, and pay attention and listen to your body.
-Henrik
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Sara.
I hope you will find a doctor that can help you and listen to you, don’t give up! It is your body and you have to fight for it!
The gold standard is to get a CT scan and messure your styloids and also chek for calcified ligaments.
The ENT who diagnosed me, would also pay great attention to pain areas/spots. By touching my jaw,neck, behind ears etc, he did also take a spoon and put it at the back off my tongue and pressed down to chek for pain or how much he could move it, he did also take a small “spoon” inside my ears and would press down, almost like he used the spoon like a crowbar to push my ears down. He noticed then i got pressure relife and pain relife from this. That was when he was on to ES, but he confirmed it with CT.
ENT doctor cheked also my vision and hearing, by using a steel pin that vibrates, cool instrument! He moved it from left to right, and from top to bottom and asked me when i heard the vibration sound and when i started to see the pin in my vision.
As for pain details, he did also pay close attention to symptoms and overall well being.
-Henrik
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Mine came and went for years. I had the feeling of something in my throat on and off for about eight years before my pain became near constant. My gastro even widened my throat two years ago, but he said he didn’t see anything to indicate it was closing. I could even feel a noticeable lump on the left side of my hyoid, which no doctors took seriously until my second appointment with an ENT this year.
About three years ago, I began getting intense eye pain flares and facial nerve pain. I’ve had multiple episodes of facial nerve pain since, averaging about once every couple of months.
About six months ago, I developed visual snow and some other neurological issues. It wasn’t until this happened that my throat and inner ear pain became near constant.
My neck and upper back pain have been constant for years; it would be nice if they were connected. Your symptoms sound like they could definitely be linked to eagles. Have you been able to get a CT done?
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Around 5 yrs ago but they never looked styloids due to looking for something or anything else. Planning in finding either a new ent since mine doesnt have any availability until june or talking to my primary to tell her everything just keeps getting worse when its during a “flare”. When it first started there was no neck pain or headaches, both are usualy constant.l now.
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Your plan to talk to your PCP is a good one. She has the ability to refer you for a diagnostic CT scan for ES if she’s willing to. We’ve suggested to new members who are trying to get diagnosed that you copy a research paper or two from our research paper list where your types of symptoms are mentioned & take that to your doctor when you see her. Another option is to print off the relevant parts of the posts @Jules has written about ES symptoms & their causes - I gave you the link to one of those in the discussion above this one & the other is below.
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I strongly recommend using/reffering to this forum to show posts or copies off discussion to whom it will be in the healthcare system. It has been usefull every single time when both me and doctors have had doubts about something!
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Yeah i would reccomend Dr.Bjorge at the highest! Think that he is suitable for be putting on the doctors list at this forum. I have never met a doctor that has been so warm and so thoughtfull, and doctors with professional pride is rare to see.
Dr.Bjorge is working at a private ENT clinic, wich is probably why he was so innovasive with his diagnostic technuiqes. Often sadly private clinics have the time and freedom to think outside the box and have time/money for creative ways for cheking.
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I appreciate all ypur guys time and effort into doing all you do, and the responses i receive for any questions i have! Thank you all so much!
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Can you give us Dr. Bjørge’s first name, a website link or phone number, @Henrik? I tried looking him up & could only find a page in Norwegian which I can’t read. 
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His full name is Oddvin Bjorge, a private ENT clinic in Aalesund wich is a city at the west coast off Norway. The best with this clinic is that in the same building they have a private radiologist, wich they can order directly CT scans so they can start studying the scans right away and you have full access to your scans an hour or so after, just pay a small fee and you can study your scans for yourself.
Dr Bjorge is not expensive either, neither the radiologist.
Website: https://www.bjorgeonh.no/
Phone number: 004746901420
Email: post@bjorgeonh.no
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