My situation is rather complicated with a lot of moving parts. I am a chronic migraine sufferer and my biggest triggers are perfumes, colognes, laundry detergent basically anything that has a carcinogen in it or a fragrance. My headaches are so severe that I had to stop working and I rarely leave the house because everything outside of my home triggers migraines. During Covid my jaw started to shift and now I don’t bite properly. My dentist and an orthodontist see nothing wrong with my jaw they don’t know why it moved. In the last two years I started having trouble with my cerebral spinal fluid and it’s movement… (ICH) Causing pressure in my head and papilledemas on my optic lens-I had them on both eyes but the vision in my left eye is being affected… I went to a dr who adjusted my Atlas (C1) he is an Atlas orthogonal Dr. he said to give it 8 to 10 weeks for results as it would take my body time to adjust to the new position. With one adjustment from a special machine, my C1 is almost perfectly symmetrical . That was in June and now I can sleep laying down, the spinal fluid is moving almost completely normal and the Papilledemas have resolved. My left eye was blurry and now they are able to do a prescription where I have 20/40 in my left eye-not sharp but much better than it was. It’s pretty amazing. In the process of looking at my x-rays the dr wondered if I might have eagle syndrome. Now, after a 3-D CT with contrast I know-I have bilateral elongated and calcified styloid processes 4.5 cms. I had never heard of Eagle syndrome but now that I’m reading about it I have a lot of symptoms and it makes a lot of sense for me. I get chronic migraines that start at the back of my neck and will often move forward to my temples, I have a pressure behind my eyes even now that the papilledemas have resolved, jaw pain and I cannot masticate food, tinnitus, and I can hear a pulse in my head, and now since the adjustment pain when turning my head. In the last six months I have started having trouble swallowing food and the only way I can get it to go down is drinking a lot of fluid. A keto diet seems to have reduced the inflammation and helped with that part but it is still a problem. I also get chronic shingles on my head that tend to want be around my eyes… don’t know if that’s related to ES or not. But , I’m now wondering if having constant inflammation there makes that area more susceptible. I also have chronic insomnia which I would not have related to ES but I am reading that a lot of people with ES have insomnia. My gait is also off and I’m very unsteady, sometimes more than others walking… I’m supposed to meet with a doctor in Dallas UT but trying to find the right doctor, and a very skilled surgeon if I’m going to do a surgery… it is such a rare condition it’s hard to find information on it so thank you for making this forum- I will contribute any way I can with the knowledge I have…
@Minh2025 thanks for sharing your story!
I have attached annotated xray pointing out your elongated styloids /calcified stylohyoid ligament.
Do you have access to your CT? I can see how close your styloids are to C1 and assess for any IJV compression
Headaches and insomnia are IJV compression related symptoms
They gave me the disk but I can’t get it to open so I will try to go to an office and upload the images so you can look at it…thanks for responding any information I can get is helpful.
Is there an online health portal you can access the imaging or is it only CD?
No for some reason they sent me to a small imaging center that I don’t normally use and they don’t even have a portal system…
Here’s the image that I will want to assess. It’s the axial view of C1. Just look for vertebrae with a white circle in the top middle:
Would be best to get a few screenshots slightly above and slightly below this level
Thanks I’ll look for those…
It does sound like you could have IJV compression, if you read up about vascular symptoms you’ll see that pressure, hearing your pulse, being unsteady (like being on a boat, or feeling a bit drunk) are common. Here’s a link:
ES Information: Common Symptoms And Possible Explanations For Them - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
Your migraines sound awful, have you ever looked into mast cell activation syndrome? Quite a few members coincidentally have both…
If you do have vascular ES, & want a skilled surgeon then Dr Nakaji in AZ would be the nearest to you… Although one of our new members has recently had surgery with Dr. Babu Welch at UT Southwestern, he has performed surgery for VES & a C1 shave I think. (also Dr Lee Pride, interventional radiologist can diagnose ES) Babu Welch, M.D.: Neurological Surgery | Cerebrovascular Disease | UT Southwestern Medical Center
@TexasEagleSuffer had surgery with him:
My Full Story - Welcome / New User Help - Living with Eagle
Thanks so much for this forum. I’m learning so much. But I’m also really overwhelmed right now. It feels that for whatever reason my symptoms are enhanced right now. I woke in the middle of the night last night and my right eye is so red it looks like they’re blood in it. My optometrist is squeezing me in at 10:30 this morning they have lots of machines they can look and see if it’s getting good blood flow-I’m very grateful for this forum because I wouldn’t have even thought that this could be related to Eagle syndrome-and now I will mention that to her- I was looking up eye symptoms on this website and it was very helpful… I have never had dry eyes and in this last year and a half they are ridiculously dry. I also have elevated heart rate it is nothing for my heart rate to be 90 to 110-I thought it was from Hashimoto’s now I’m wondering if it is ES. I wouldn’t have thought that was ES.. I’m learning a lot but also I have a lot of other things wrong with me so I’m overwhelmed. I mostly stay positive and happy but sometimes it does get to me.
Hello there. I am new here as well. This is my first post in fact. Your statement. about having lots of things going on with you and being overwhelmed spoke to me. I felt like I just wanted to say that I know exactly how you feel. I too have a lot of things wrong with me. 
. Sometimes it’s hard to keep the smile going. I have had RA for over 40 years and have lots of complications from that and joint destruction. I started having symptoms of ES probably at least 20 years ago but really only started to think something else was wrong besides my RA related issues about 15 years ago. I could be way off with this as well. Sometimes just to get through a day you have to try to tune things out so I honestly really don’t know when symptoms began. I was having the pulsetile tinnitus when I was told that I had some significant instability in my C spine. About 10 years ago I had a C1 C2 fusion and it helped my symptoms somewhat for a period of time. But then they came on hard with a vengeance. Long story short, I have recently been connected with a neurosurgeon in Toronto at Saint Michaels hospital. Although I have not yet seen Dr Pereira, his team has carried out examinations and testing and they have discovered that I am apparently the “most obvious and significant example of ES with severe compression of my internal jugular” they have ever seen. Their team also includes aneuro ophthalmologist as well. They have determined that I have bilateral papilloedema, and significant intracranial hypertensive pressure with a bunch of other issues that I can’t name for you right now without looking at my report. I haven’t read through all of the information for newbies here yet but I’m gathering that dry eyes and the associated issues are common with ES sufferers. This makes me think that I should be revisiting my Sjogren’s syndrome diagnosis. Because I have RA, this was an assumed associated disorder. Now I’m wondering if it is actually related to the ES. I have further exams coming up in October for my eyes. At this point, we know emphatically that I have elongated styloidal processes and I feel like the rest is a bit of a no brainer. My neurosurgical team wants to perform a cerebral angiogram to further assess my intracranial hypertensive pressure. I don’t want to do this. I don’t see the point of having that procedure. For me it is risky because of my compromised tissue, with chronic inflammation for most of my life I have now calcification throughout my arteries. This is in spite of very healthy living, exercising and eating like a saint!. I just want to have the styloidectomy and hopefully be done with it. Apparently, my C2 is also contributing to the compression. I am wondering if I should be reaching out to the surgeon who carried that procedure out a decade ago to see what his take is on this. I am finding that it is not easy to convince the doctors here in Canada that I should go straight to having this surgery. at the moment, I’m feeling like my current neurosurgical team is looking at me like a fantastic test subject for the teaching hospital and not a human being who just needs help. It was only. yesterday that, while perusing the Internet looking for further information, I discovered this support group. I have already found it incredibly helpful. Aside from all the information to be found here, it’s also the fact that there are all of you with the same or similar struggles that can, for lack of abetter way to say it, commiserate! - I am truly sorry to hear your struggles and all of the struggles of those participating in this group. But I am grateful to have found you!
@Deanna the Canadian health system is a nightmare so I’m glad you were able to meet with a competent team in Toronto.
Do you happen to have access to your CT scan (assuming you’ve had one done)? I can show you the IJV compression if you’re interested
Hey there! Are you also in Canada? To be honest, I hate to make a sweeping statement like that regarding healthcare in Canada. I have had so many problems my entire life, I am truly grateful for our universal healthcare! But, I know that the care that I have received has been in part due to my strong advocating on my own behalf! 
also good care has been hit and miss. I have had some amazing doctors, and I’ve also had some real duds! The verdict is still out on these folks at Saint Michaels Hospital in Toronto. I’m hopeful they will work with me to find the best solution. In my experience though, teaching hospitals tend to dehumanise the patient somewhat. However, I am determined to remind them of my humanity!
Reading some of the posts here, I see how much you can help with interpreting scans! Before receiving your message I realised I need to reach out to my care team to get access to the pictures themselves. I have the report from the doctor who reviewed the scans, and I did see the scans myself with a full explanation, but I don’t actually have a copy of them myself at this point. I would really like to get that as soon as possible and once I have that I will absolutely share them with you! Thank you so much for your help! - The overwhelmingly obvious issue we discussed from my scans was the severe compression of my internal jugular veins. But, at the time of my last appointment I was not aware that so many other symptoms I continue to have could and may very likely be stemming from my elongated styloidal processes. I have been attributing them all pretty much to my RA that’s including jaw pain, ear, neck, headaches, vision problems, near passing out, throat and swallowing issues, et cetera et cetera. So, I am wondering if there are other things being compressed!.
As soon as I can get my hands on the scans, I will share!
@Deanna yes, I’m in Nova Scotia. I started experiencing symptoms last October while attending university in Ontario. Got my first head and neck CTA done there. Now I’m home in NS being taken care of by family since my symptoms are so debilitating.
In Ontario, you should be able to get access to your CT imaging on Pockethealth website. I was able to get access to my CTA within 5 minutes on my phone which was crazy to me. Worth the shot checking on there.
Wow! You have been through a lot and I’m so sorry to hear that, and you reaching out to me means a lot… Like you I do a lot of things to maintain the health that I have but I literally have to pick what is the top priority in that moment that I need to focus on because I can’t do it all at once… Believe it or not finding out I have ES in some ways is a relief because it covers a lot of symptoms all at once that I have.
I’m grateful that I have this forum that we can go through ES symptoms together and decide how to proceed to get the best results…
Thanks again for reaching out!
I’m so sorry it’s become debilitating like that and yet you take the time to help others and read their images and support… How kind.. thank you for all that you are doing.
How is your eye today? I do occasionally get bleeding in my eye, it looks alarming but isn’t usually a problem, it dissipates quite quickly. Because my eyes are dry too I do get redness & inflammation quite often, I just use brolene eye drops for a few days & it settles- I’m UK & we can get those otc, but it’s best to see an ophthalmologist though.
For you & @Deanna , if you have dry eyes it’s an idea to rule out Sjogrens Syndrome; dry eyes do seem to be common with ES but autoimmune issues are too. My eyes & mouth are particularly dry & I have other SjS symptoms, but the blood test was negative, apparently a third are falsely negative though! I’m managing okay so didn’t want to go down the lip biopsy route… There is a Ben’s Friends Sjogrens Syndrome group if you’re interested, although it’s a bit quieter than here!
Your eyes bleed? It sounds very alarming… It did look like my eyes were bleeding inside it looked like you painted them with a red paintbrush… So I went to the optometrist because he is the only thing that was open and the circulation is good, the fluid is not back in my optic lens, I do have dry eyes now but never have before and he said I need to keep taking my antiviral because it could be an eruption of shingles around the area but also that they are incredibly dry.. I have been evaluated for autoimmune I don’t think that’s in play for me right now but I do think the dry eyes are from the ES because that is a new symptom. I have excess saliva in my mouth. My right eye is still very swollen and red and it’s definitely worse laying down so I’m wondering if the pressure is making everything worse at night. I am going to set up with Dr. Babu in Fort Worth and just do a consultation with him. I am still cautiously proceeding forward… I will also go back to my Neuro ophthalmologist and have him evaluate my eyes with more detail… I’m also gonna check into the mast cell activation you mentioned. Never hurts rule things out…
Sorry, I probably didn’t explain the bleeding very well, it’s a burst blood vessel , & isn’t usually harmful unless it happens alot- it can occur with high blood pressure for example, here’s an image of what it looks like:
Are you using a lubricant for your dry eyes too? There are otc ones, your optometrist should be able to recommend one if not. Sounds horrible potentially having shingles in your eye
Man that looks painful. Shingles in general is very painful. Unfortunately and fortunately, I’ve had it so many times that I know what to do and I’m able to keep from having the sores express, sometimes… I get acupuncture, we do pricking the vessels and hot cupping and that releases the "heat"from the virus… i’ve tried the lubricant at night and it does feel good but it doesn’t seem like putting white petroleum in your eye is a good idea… so I mostly use glycerin drops. I reached out to Dr. Babu’s office to get a consultation I will let y’all know how it goes. I’m just interviewing him to get more information I’m not committing to this… I’m on the fence of having an ENT that has done the surgery a lot or a neurosurgeon that has done it a little but maybe his skill level/ training is more for wking with nerves -might make more sense but I also think that having firsthand experience doing the surgery is also worth its weight in gold… would love to find a neurosurgeon that has done the surgery a lot…
A skull-based ENT would likely be most experienced with performing surgeries around the area of the styloid and respective nerves (i.e., vagus, spinal accessory, hypoglossal etc)