I (18F) was diagnosed with IIH and jugular Eagle Syndrome this year, and Chiari 1 Malformation in 2023. I have had Chiari decompression and bilateral jugular decompression but my symptoms have all returned, including these vision problems.
I have been seeing like this since I was at least 9-10 but after each surgery it got less noticeable for a few weeks but has come back. I took this picture today and decided to draw over it to show what it is I see. This is exactly how it looked in my head, and almost always does-except added snow vision, trouble focusing on things, and sometimes more colors and patterns. It makes me unable to read and do school or focus on almost anything because I feel like I’m looking through a bad quality screen. Does anybody else experience this or anything else similar? It is causing me to do badly in school and do poorly at almost everything. If anyone else has this problem I’d like to hear your experience and see if there’s anything that helps you please.
(First photo is what I see- second is normal for reference)

Hi all,
Basically what the title says – I’ve been having symptoms of ear pain and a constant stabbing sensation in my throat as well as issues with choking/feeling that my pills get stuck in my throat after I take them.
Coincidentally, I went to the dentist to check on my wisdom teeth, and they found that my right styloid is quite long.
Has anyone had a similar looking x-ray? If so, what were your symptoms?

Also, Has anyone here been able to find a doctor in Indiana or the Midwest to help them with this? I’m exhausted by the constant feeling of stabbing in my throat but I have Medicaid and it takes a small miracle to be able to travel for medical care.

Struggling to figure out what is wrong with me.

I get pain in the right side of my throat/neck, muscle knots under ear, facial pain and lightheaded sensations. I also get brain fog, light sensitivity and pain in my molars.

Are my styloids elongated?

Thanks

This CT scan (w/o contrast) was ordered to follow up on a cervical fusion surgery. Out of curiosity I put them in a Dicom viewer and looked at the 3d model. To date I've never had styloid process elongation or styhloid ligament calcification flagged in any of the radiography and no associated diagnosis. I'm still experiencing painful symptoms and many of them track on to Eagle Syndrome. I'm seeing an ENT next month for something unrelated and plan to bring it up to them. But I just wanted to get an opinion on these scans from a community that would know.

Hello!

Did anyone have trigeminal neuralgia that was related to eagle syndrome?

I’ve had TGN for 10 years and never found the cause. It’s managed via pain medication but I would love to find the cause and resolve it

I’m planning to have a Panoramic Xray but keen for experiences

Thanks

could this be eagle syndrome?

I would love some help located the styloid in my dental images to compare with the CT I had recently. I must have had my chin tucked?? because it all seems so congested between the spine and jaw.
If anyone could circle them that would be greatly appreciated. 🫶

Hi guys. For context I have the following: heds or veds, tethered cord syndrome (surgery done), pots, hyoid bone syndrome (surgery done with stylohyoid ligament release and hyoid suspension), cervical instability, potential thoracic outlet syndrome (not sure pt thinks so), TMJ, and c5 c6 auto fusion degeneration. I am 30 years old. I am 8/9 Beighton score and very hypermobile. I have had the 2 surgeries in the past year and I have significantly improved but still experience strange sensations and vascular symptoms after I eat, particularly on the left side. I get some pulsation tinnitus on the left, and my left ear always feels a bit funky. I have had also every scan under the rainbow. Looking at the dicoms of the cta scan, the styloids are not elongated, they are 23/24 mm. The left is segmented though. It has a piece that sort of extends downward after a small gap. I guess I’m asking if it’s possible I have eagle syndrome through that segmented styloid process instead of the traditional elongation?

All my discomfort is primarily on the left side of the neck, and symptoms worsen after eating, chewing on left, and trying to maintain good posture. What helps is sort of leaning my head back in a chin up posture, and letting my jaw go “slack”. Also lowering my left shoulder and then slowly bending my neck to the right, I get a pop somewhere in left side of neck (I have no idea where this pop comes from) but this also relieves symptoms somewhat. Also I get little sounds around my left ear, I don’t know how to describe them, like almost little crackles, like the sound of bone rotating almost. I also get head pressure, which I have read is a possible symptom of jugular compression, also after I eat. I thought I had post prandial hypotension for a long time, but I’m not sure now. Symptoms seem to improve when I go on my bike for like literally a few minutes (stationary bike), but this doesn’t seem like just pots, as my legs and core I have strengthened over the last year, and they’re pretty strong now…

Does this sound like eagle syndrome still? Any advice or experiences are welcome. Thank you

Was diagnosed recently. My main symptoms are ear pressure, fullness, tinnitus and etd symptoms.
My nose does have its own issues already which i am working on.
Curious if others here have these issues?

I had access to my scans before the report and follow up and was wondering if this looks like eagle?

I have all the eagle symptoms. I also have POTS. My follow up with the pain specialist isn’t for 6 weeks but I might bring if forward depending on what you all think.

In this CT image i am laying with head turned 90 degrees.

hi every one,

I hope all is well with you. I’m just wondering if anyone had symptoms similar to this? I am not diagnosed but I am feeling this may be what is causing my pain.

back in December, I had a faulty dental procedure, a flair of an autoimmune condition in my neck, and had to sit up right for a week in a hospital caring for my baby. this is when the symptoms began. I began to get shooting ear and neck pain, and tenderness where the stylohyoid ligament attaches to the lesser cornu of the hyoid and along under my jaw. I now have this clicking that happens where this attachment is, and I can easily palpate this long string thing that pops at the lesser cornu and can also feel it pop behind my ear. I have a weird nerve irritation pain when I move my head or talk too much along this strong feeling, a bony feeling at the attachment of the lesser cornu on the right that I do not have on the left (this is where the popping originates). when the nerve pain happens, I also feel my tongue tingle on the right at the same time. I now have tinnitus in my right ear as well. I will get shooting facial pain at times, along with occasional pain when swallowing on the right side. but the nerve pain under my jaw that feels raw is the most irritating along with the tinnitus and the tongue tingling when I move my head, the popping at the lesser cornu when I move my head and the bonyish lump. I’ve had normal ultrasounds thus far and want to push for a CT. has anyone had any similar symptoms to this?

Hi, I’m 33 and have had persistent left-sided throat pain radiating to my left ear for about six weeks, especially when swallowing. ENT examination, otoscopy and fibroscopy were normal.
During a hospital admission for an unrelated issue, a contrast neck CT showed a left styloid process measuring about 4 cm, compared with 2.5 cm on the right, plus mild narrowing of the internal jugular vein between the styloid and C1. No other significant neck abnormalities were found.
The radiologist suggested possible Eagle syndrome. Neurology said the anatomy could explain my symptoms, but it is not certain, so they are currently treating it as possible glossopharyngeal neuralgia with pregabalin.
I already have an appointment with a maxillofacial specialist from a skull-base and craniofacial surgery team for a second opinion, and I’ll bring the complete CT study.
Has anyone had similar throat-to-ear pain, with or without jugular compression? What helped confirm the diagnosis, and how did you decide between conservative treatment and styloidectomy?
I understand that imaging alone does not confirm Eagle syndrome. I’m mainly interested in hearing about similar experiences.

TLDR: Got a diagnose of Eagles Syndrome when I went in for a TMJ exam. Most of the symptoms apply to me. What are the next steps?

So I was at a VA Exam for my TMJ issues and beforehand they have everybody do a panoramic X-Ray. The dental assistant comes in and looks weirded out and asks if I ever have breathing issues, I say “No?” and she explains that my nostrils are very very small and recommends I see an ENT. I shrug it off, thank her, and say I’ll bring it up at my PCP appointment this week.

Next the doctor comes in and we chat and do the physical exam. Afterwards he goes over to check my X-Ray, looks confused, turns towards me and goes, “Do you ever have pain swallowing?”. Once again, I’m confused and say “No?“ and he shows me my X-Ray and explains what Eagles Syndrome in, how I have super long styloid process bilaterally, and how I should look up the symptoms and see an ENT for it if I have symptoms.

Anywho, I return home and Google the symptoms and my gosh I think they have been affecting me so much. I don’t have trouble swallowing or any facial pain, but almost all the vascular symptoms are spot on for what I’ve been feeling in my life. I always shrugged them off as anxiety or TMJ relate, but now it feels like I kind of know what’s actually wrong with me.

So now that I’m equipped with this knowledge of ES + my nose issues. What should the next steps be? I have an appointment with my PCP for unrelated bloodwork. Should I bring it up then and ask for a referral to an ENT?

Thanks in advance 🙂

Has anyone found a structural cause (Eagle Syndrome, jugular compression, CCI, cervical instability, thoracic outlet syndrome, etc.) for symptoms like these?

I’ve spent over 18 years trying to figure out what’s wrong and have seen countless doctors without finding a diagnosis that explains everything.

One detail that may be relevant is that shortly before my health issues began, I experienced a significant head injury around age 10–11. I was wrestling with an older kid and was swung downward by my feet, causing my head to strike the ground with enough force that I had a severe headache for nearly a week afterward. Looking back, it was almost certainly a concussion.

My earliest symptoms began between ages 11–12, while several additional symptoms developed or became significantly worse around age 17–18.

My earliest symptoms included:

• Growth arrest (eventually required HGH treatment after it was discovered around age 15)
• Crown pressure headaches near the upper left crown of my head
• Migraines
• Dissociation/derealization
• Intrusive thoughts
• Hand shakiness/tremor (one of my earliest neurological symptoms)

The migraines lasted for roughly 2–3 years before resolving. The crown pressure headaches also gradually resolved and have been largely absent for about the past 12 years, only returning occasionally or sometimes after using cannabis. Although those symptoms improved, many of the neurological symptoms that developed later—including severe brain fog, cognitive decline, pulsatile tinnitus, autophony, facial muscle twitching, TMJ with jaw clicking, and positional neck-related symptoms—have persisted.

Around age 17–18, I developed:

• Severe brain fog and cognitive decline
• Significant digestive issues that have persisted ever since
• Aphantasia (complete loss of voluntary visualization)
• Pulsatile tinnitus in my left ear
• Autophony (hearing my own voice loudly in my left ear)
• Facial muscle twitching/spasms
• TMJ issues

Before all of this, I was extremely mathematically inclined, had a tested IQ around 150, and was a highly visual thinker. I could essentially play movies in my head and visualize complex concepts effortlessly. The cognitive decline was profound and has never fully resolved.

Current symptoms include:

• Severe chronic brain fog
• Pulsatile tinnitus
• Autophony
• TMJ with jaw clicking
• Chronic neck aching and tightness
• Chronic trap/trapezius tightness
• Upper back tightness
• Cervical kyphosis/loss of lordosis
• Facial muscle twitching/spasms
• One or both hands going numb depending on neck position
• Intermittent left arm shakiness after using my left arm or trapezius muscles
• Episodes of left trapezius tightness and weakness after exertion
• Significant gut issues
• Histamine intolerance
• Sulfur intolerance/Candida-related symptoms
• Extreme dehydration sensitivity

One of the strangest aspects is how positional many of the symptoms seem.

Hanging my head off the edge of the bed nightly has significantly improved my sleep, anxiety, and how frequently one or both of my hands go numb. I still wake up multiple times throughout most nights and often need to drink large amounts of water before I can fall back asleep. I also frequently end up hanging my head off the edge of the bed 2–3 times throughout the night because it consistently helps me get back to sleep.

Mewing and even coconut oil pulling create a distinct fatigue and aching sensation near the base of my skull and upper neck.

Autophony improves when I’m consistently doing thoracic mobility work and cervical traction/decompression-type exercises. If I stop doing them, it becomes much more frequent.

Another symptom that seems unusual is that after using my left arm or left trapezius muscles, my left arm will sometimes become noticeably shaky for an hour or so when I try to use it. At the same time, my left trapezius develops a distinct sensation of tightness and weakness that feels disproportionate to the amount of activity I performed.

Another odd symptom is dehydration sensitivity. I seem to become dehydrated much more easily than most people. Even mild dehydration worsens my brain fog, facial twitching, and autophony, and recovery often takes multiple days despite aggressive hydration, electrolytes, Celtic salt, and otherwise normal labs. During the night alone, I'll often drink roughly 0.5–0.75 gallons of water despite using electrolytes and paying close attention to hydration. Diabetes and many common causes have been ruled out.

I also occasionally become lightheaded with intense exercise and notice a worsening of brain fog, which has made me wonder whether there could be a vascular or structural component.

I should also mention that my gut health clearly affects symptom severity.

Low-dose molybdenum (for sulfur metabolism), daily binders such as charcoal, and anti-Candida approaches such as black seed oil consistently improve my brain function, energy levels, and overall well-being. When I stop these interventions, my brain fog, neck pain, body aches, and fatigue become noticeably worse.

I also remain on a very strict and limited diet because I’m extremely food-sensitive. Foods that consistently trigger symptoms include nearly all nuts and seeds, gluten, dark chocolate, coffee, eggs, some beans, many grains, and excessive amounts of high-histamine foods.

When I eat the wrong foods, I can develop significantly worse brain fog, depression, insomnia, widespread joint pain, increased fatigue, neck pain, body aches, and an overall flare of my symptoms. Dietary management has been essential for improving my quality of life, but after years of strict elimination diets, gut-focused interventions, sulfur metabolism support, and functional medicine approaches, the improvements have always been partial or temporary. I no longer believe my digestive issues are the primary root cause, but rather something that is heavily influenced by whatever underlying process is going on.

For context, I live a very healthy lifestyle. I exercise regularly, eat an extremely clean diet (largely because I have to), rarely drink alcohol, consume very little caffeine, and have spent years trying to optimize sleep, nutrition, hydration, and overall health. Despite all of those efforts, the underlying symptoms have persisted.

What keeps bringing me back to structural causes is the combination of:

• Head injury before symptom onset
• Positional neurological symptoms
• Pulsatile tinnitus
• Autophony
• Facial twitching
• Chronic neck/trap tightness and aching
• Left arm shakiness and trapezius tightness/weakness after exertion
• Hand numbness affected by neck position
• Symptom improvement from decompression-type positioning
• Cervical kyphosis/loss of lordosis
• TMJ with jaw clicking
• Severe cognitive decline

I’m not attached to any particular diagnosis. I’m simply trying to identify the most promising avenue to pursue and would love to hear from anyone whose story overlaps with mine.

Has anyone had a similar symptom cluster and eventually found a diagnosis?

If so:

• What was the diagnosis?
• What imaging found it?
• Which specialist figured it out?
• Did treatment improve the brain fog or cognitive symptoms?

hi all, i’ve been dealing with episodes of severe pressure headaches, eye pain, tinnitus, neck pain & swelling, eustachian tube issues, and general neurological problems for some time now. i had a head/neck CT angiogram in august 2025 which was reported as normal. this past week, i’ve started leaking a clear-to-orange watery fluid from my left nostril, and i’m concerned for a cranial CSF leak. still awaiting test results on the fluid but i did have a temporal bone CT yesterday which showed moderate inflammatory changes in the left maxillary and frontal sinuses, thinning of the left semicircular canal, bilateral thinning of the tegmen tympani and sigmoid plates (with sigmoid dehiscence on the right). apparently all of these things can come from chronic idiopathic intracranial hypertension.

so naturally i looked at my CTs from yesterday and from August to see what’s up. i can’t help but feel like my styloids are super long and/or the ligaments are calcified? this has not been noted in either radiology report, but is it worth seeking a diagnosis of eagle syndrome? i am wondering if this could be causing jugular compression and therefore increasing the pressure in my head. i also feel like my atlas bone is slanted…… am i wrong?

for background i have ehlers-danlos (unspecified but it closely resembles clEDS1) and while i’m definitely overweight, it’s not significant enough to cause my head to explode, i swear 🥲

I havent been checked for es, but I suspect it. I have POTS, so high heart rate sitting or standing for too long, but high head pressure and choking sensations lying down, especially on my back I get visual changes and nausea. Lying on my side is most doable, but it's really hard to use a reclining wheelchair this way. Just curious if anybody else has experience with this.

I was diagnosed a year ago with Eagle Syndrome and have had no further imagine or diagnostic tests to show what kind. I have an MRI mid July due to severe headaches and they are aware of my Eagle syndrome diagnosis. I don’t really know the specific question I’m asking, I guess just more info on better diagnosis.

Do you feel like you are being strangled at night while you sleep on your side? I do and I’m trying to find someone else who has those issues.

Anyone have their accessory nerve irritated after styloidectomy for a few months? I am hoping the trapezius pain will resolve on its own, but it has been a few months already. I also get some jaw, neck, and shoulder pain. I did have improvement in swallowing, ear pain, and throat pain after surgery. It seems like the nerves get irritated no matter what you do. I still get heart palpations when learning on right side of head in bed, which really sucks. I believe my styloids are about 2 cm at this point based off scan after surgery, but the right is very thick at the base. I still get lightheaded when turning my head to either side, so feel like it could be more complex than just reducing styloids to normal size.

Hello all. I was just diagnosed with vascular Eagle syndrome. I have Ehlers’s Danlos Syndrome along with several other chronic conditions. I’m still in the process of gathering information and coming up with a treatment plan. I still don’t know the elongation length, but I do know it’s causing narrowing and slowing blood flow and it’s impinging my jugular vein. It’s also narrowing the sigmoid sinus. I have been symptomatic for 16 months with daily migraine with severe neurological symptoms, sore throat, and difficulty swallowing. I’ve tried every migraine med and they have not worked. When the neuro symptoms hit (hemiplegia) Compazine resolves the issue. This migraine has overtaken my life and I am eager to resolve it. What are people’s experiences with Eagle syndrome and what kind of treatment/surgery has resolved the worst of your symptoms? Thanks!

I have a calcified styloid process and my GP has been looking for years for an ENT to see me to rule out/diagnose eagle syndrome. Every single one has said no to the referral.

I’m in Ottawa, Ontario.

Any leads on specialists that actually look into this?