Chronic Migraines, recently heard about Eagle : Asking myself questions now

[PaulineC]

Hi everyone,

My name is Pauline, I’m 26 years old and I’m from Luxembourg. Thank you for accepting me in this group.

I have been suffering from chronic migraines since I was about 19–20 years old, when I started university. Before that, I had never experienced migraines, headaches, or any significant health issues. They seemed to appear almost overnight.

At first, I assumed they were simply related to stress from my studies. However, over the months and years, they gradually became more frequent until they turned into chronic migraines.

Over the years, I have seen many specialists in an attempt to find the cause of my symptoms: ENT specialists, gynecologists, endocrinologists, dentists, physiotherapists, osteopaths, and many others. I am currently being treated by a physiotherapist who specializes in cervical spine disorders, but despite all these treatments, nothing has provided lasting relief.

About two years ago, after years of searching for answers, I finally saw a neurologist who diagnosed me with chronic migraine. I tried several triptans and eventually found two that work reasonably well for acute attacks. Because I was using them too frequently, the headache clinic that follows me here in Luxembourg recommended preventive CGRP treatment.

I received Ajovy (one injection every month) for nine months, but unfortunately it had absolutely no effect on my migraines. After that, I switched to Aquipta (Qulipta in the US) for eleven months. Sadly, I only experienced side effects (mainly gastric ones) without any improvement in my headaches, so I decided to stop the treatment at the end of January 2026. Since then, I have only been taking triptans (around 10 per month), but my migraines continue to worsen. I now experience headaches or migraines approximately 15 to 20 days every month.

A close friend of mine, who is also a member of this group, recently told me about Eagle syndrome and suggested that I should have a closer look at my styloid processes. Until then, I had never even heard of Eagle syndrome. (hey bestie @junonbss)

Yesterday, during a dental appointment, I reviewed a panoramic X-ray that had been taken in 2024 for a dental implant. For some background, in 2023 I underwent a septoplasty because we believed my migraines might be related to my breathing. I had a significant nasal septum deviation, but unfortunately the surgery made absolutely no difference to my headaches.

Around the same period, I also had a retained baby tooth removed before receiving a dental implant on the left side of my mouth. When I looked again at my panoramic X-ray, I could clearly see calcification of both styloid processes/stylohyoid ligaments, especially on the left side. Based on the measurements I personally have made from my imaging, my left styloid process is approximately 3.6 cm, while the right seems to measure about 3.3 cm. I will attach the panoramic X-rays to this post.

What makes me question whether Eagle syndrome could be involved is that my migraines are bilateral, but they do not feel the same on each side and not any migraine’s treatment seems to work on me.

On the right side, my attacks are what I would describe as “classic” migraines: severe throbbing pain around my forehead and trigeminal nerve, sometimes extending into my neck and trapezius muscle and spreading over one side of my head (I’d like to mention that I never throw up when im in pain, surprisingly)

On the left side, however, the pain is completely different. It is usually localized around my temple and can radiate toward my jaw, just below my ear, and sometimes into my neck. I also frequently experience a strange sensation deep in my throat, almost as if something is out of place. It is not constant, but it has been happening for at least two years. I can’t say that I’m in pain every single day, but it seems to be mostly 15/20 days per month when the pain occurs of the left side.

But I’m never really in pain at the same time on both sides.

I also have significant neck tension every single day. Throughout the day, I constantly feel the need to gently crack my neck (nothing forceful), because it feels as though something needs to be released or repositioned. This sensation has become part of my daily life.

I have also been wearing a night guard for bruxism every night for the past four years, but unfortunately I have not noticed any significant improvement in either my migraines or my facial and neck pain.

After my friend mentioned Eagle syndrome, I went back and carefully reviewed all of my previous imaging studies, including my brain MRI, facial and sinus CT scan, and dental CBCT with her. Looking back at these images, my styloid processes appear clearly visible and relatively long. This has made me wonder whether at least part of what has been diagnosed over the past several years as chronic migraine could actually be related to Eagle syndrome, or whether both conditions could coexist.

Another reason I am asking myself this question is that there is no significant history of migraines in my family, even though I know migraine disorders often have a genetic component.

At the end of this week, I will also be starting Botox injections for chronic migraine for the very first time as my next preventive treatment. I sincerely hope it will help, but now that I have learned about Eagle syndrome and have seen these findings on my imaging, I also feel that I should explore this possibility before ruling it out. That is why I decided to join this group. Before continuing my investigations with doctors here in Luxembourg, I would really like to hear from people who have experienced something similar.

Has anyone here initially been diagnosed with chronic migraine before later discovering Eagle syndrome?

Has anyone experienced headaches on both sides but with completely different types of pain depending on the side?

Did anyone have symptoms such as temple pain, jaw pain, pain below the ear, throat discomfort, persistent neck tension, or the frequent urge to crack their neck?

If you underwent surgery for Eagle syndrome, did it improve your headaches or migraine-like symptoms?

Thank you so much for taking the time to read my (long) story. Any advice, experience, or suggestions would truly mean a lot to me. (I’ll try to add my X-rays if I can find out where to attach them )

[PaulineC]

[Jules]

Hi and welcome to the site!
I can see a section of calcified ligament on your images, and this can be enough to cause irritation of nerves which could be causing your pain.
I wasn’t ever diagnosed with migraines, and not sure if I even had them, but the throbbing pain in your temple and forehead that you describe I can relate to- I wasn’t ever sick either but couldn’t function and luckily this didn’t last long, just a few hours, I had this at times before my surgery, never since… It sounds like your pain is the trigeminal nerve path and this nerve is commonly affected with ES. The glossopharyngeal nerve and facial nerve are also often affected with ES, so could explain so of your left sided pain? It might be worth trying nerve pain meds if you haven’t ever tried these, just in case they help?
We have also had lots of members who’ve had migraines…and pain different on both sides is common, as the styloids can grow at different angles and therefore affect different nerves.
Throat discomfort and neck tension are also common with ES…
I think it’s worth exploring ES, if you’re able to get a CT of your head and neck down to the hyoid bone, preferably with contrast, timed to show the arterial and venous phases and evaluated for ES that would be helpful, and it would help you to be able to get a diagnosis.
Unfortunately we don’t know of any doctors in Luxembourg who treat ES, but you can cross that bridge if your CT shows anything?
Do ice or heat help at all?

[PaulineC]

Thank you so much Jules for your thoughtful reply and for taking the time to look at my images.

It’s actually very reassuring to hear that someone else experienced a similar type of temple and forehead pain before surgery. My pain is often difficult to describe because it doesn’t always feel like a “typical migraine.” On my left side, it usually starts just below my ear and around my jaw, then spreads to my temple, eyebrow, the back of my head and down into my neck and trapezius. On the right side, it’s different and is usually more like a pain behind my eye and sometimes starting from my neck.

I also have frequent neck tension on both sides but mostly on my left side, a feeling that I constantly want to crack my neck (and so I can’t force myself to release the tension by doing it), and occasional discomfort in my throat especially when my neck is under tension, so reading that these can be related to Eagle Syndrome really caught my attention.

I haven’t tried medication specifically for nerve pain yet, so that’s definitely something I will discuss with my neurologist.

I’m actually starting my very first Botox treatment for chronic migraine later this week, but after discovering that both of my styloid processes are elongated and that my stylohyoid ligament is calcified, I really don’t want to ignore the possibility that at least some of my symptoms could be related to Eagle Syndrome.

I’ll definitely ask for a CT scan with contrast of my head and neck down to the hyoid bone, with evaluation for vascular compression and Eagle Syndrome. Hopefully that will give me some answers. The ENT that does it is actually the same that made my septoplasty surgery. That’s actually a positive point here because at least I know him and trust him.

As for ice or heat, I haven’t really noticed a major difference. Sometimes gentle heat on my neck helps the muscle tension a little, but it doesn’t stop the pain itself. I usually go for ice on my head when tension occurs at the same time and also (when I can) put my feet in warm water. It sometimes help to reduce the vascularisation on my head… I’m being creative!

Thank you again for your kindness and advice. This group has already been incredibly helpful, and I’m very grateful to have found it.

[ann]

Hi, welcome to the group. My pain started at the dentist. As it turned out my styliod on one side pressed into my trigeminal nerve causing sever teeth pain in an upper tooth and sever migraine pain mostly on one side, I had what I called a burning scalp. Sometimes I would have eye and ear pain but then again it would be jaw pain and tightness of neck. Eventually my other side came into play where I felt a swallowing issue and more of a dull ache in head and jaw pain, then back pain then my whole side inflamed. Originally diagnosed with atypical facial pain no medication, Chiropractor Alta’s care or TMJ treatment work. I finally found oral steroids helped me the most what is called a medrol dose pack could lower my inflamation for a week or so before it started again. It was then suggested I had Eagles 3.5cm styiolds on both sides and I had first side removed and better right away….second side doctors argued and surgery was delayed and symptoms got worse….eventually second side removed and I am 95percent better….i developed tinnitus late in the game and have it 24/7 now. I wrote a journal of my activities and was able to identify what actions caused my pain to get worse….talking with head turned, massage with my face in face cradle therapist pressing down and weight put on my shoulders….that helped me understand that the movement allowed my styiold to bump into my facial nerves. It to awhile after surgery for muscles to relax and nerve to be less active but regular over counter migraine medication go me through any additional head aches….now no head aches at all…..hope that helps

[Rosie]

Hi @PaulineC welcome to our group. Your symptoms sound very similar to mine. I had sudden onset migraines including auras and double vision that I had never experienced before. Temple pain, pain under ear, back of lower skull and mastoid. Three different types of tinnitus (lucky me). Sometimes get a feeling that something is lodged behind my left tonsil and pain in my left shoulder, which I understand from this group that this could be an irritated accessory nerve. CT with contrast originally deemed normal, although after getting second opinion my SP is elongated 3.5cm and I have IJV compression from my C1 TP. I am currently waiting surgery, so can’t advise you if that will help cure anything.

So, I would definitely say you need a CT with contrast for further diagnosis.

Regards Rosie

[PaulineC]

Thank you so much for sharing your story Ann. Reading experiences like yours gives me hope that there may finally be an explanation for at least some of my symptoms.

Several things you described sound very familiar to me. My left-sided pain often starts just below my ear and around my jaw, then spreads to my temple, eyebrow, the back of my head and down into my neck and trapezius. I also have frequent neck tightness and constantly feel like I need to crack my neck. Sometimes the pain even seems to involve my TMJ. Interestingly, my symptoms are very different on each side, just like yours were. My left side is much more focused around my jaw, temple and neck, whereas my right side feels more like a classic migraine behind my eye.

My styloid processes measure about 3.6 cm on the left and 3.3 cm on the right (based on my measurements), and my two stylohyoids ligaments seemed to be calcified. Until recently, I had never heard of Eagle Syndrome, so everything had simply been diagnosed as chronic migraine. I’m actually starting Botox for chronic migraine tomorrow, but I also want to investigate Eagle Syndrome properly before assuming everything is migraine-related.

I really like your idea of keeping a journal to identify movements or positions that make the pain worse. I’ll start doing that because I have noticed that certain neck movements and muscle tension seem to trigger or worsen my pain.

I’m so happy to hear that both surgeries gave you such a good outcome, even though I’m sorry the second one was delayed. Thank you again for taking the time to share your experience—it really helps people like me who are just beginning this journey.

[PaulineC]

Hi Rosie, thank you so much for sharing your experience. I’m really sorry you’ve been through all of that, but it also helps to know that I’m not alone.

Your symptoms sound incredibly similar to mine, especially the temple pain, pain below the ear, the back of the skull, neck tension, and shoulder pain. I also sometimes feel discomfort in my throat on the left side, so it’s very interesting to hear that this could be related to the accessory nerve…

What really caught my attention is that your first CT with contrast was reported as normal, and only a second opinion identified an elongated styloid process and internal jugular vein compression. That makes me realize how important it is to have the images reviewed by someone familiar with Eagle Syndrome. I’ll keep that in mind when I’ll see my ENT in September. I’ll definitely ask him for a CT with contrast of my head and neck down to the hyoid bone, with evaluation for Eagle Syndrome and possible vascular compression.

I really hope your surgery goes well and that it brings you significant relief. Thank you again for your kindness, and I wish you all the best for your upcoming operation - Sending you my warmest prayers.

[Jules]

I hope that perhaps the botox will help, another medication that some members have found helps is muscle relaxant medications like Baclofen, if you have alot of neck tension that might be worth a try?

[PaulineC]

Thank You Jules. Surprisingly it went pretty okay today. I was scared to feel really bad afterwards but it seemed manageable for the rest of the day. Might be another story tomorrow…

I’ve never heard about this medication but will definitely talk about it to my doctor on my next appointment. Thanks!

[petrichorrr]

Hi Pauline,

It is CRAZY to me that you are describing my migraines to a tea. I was just diagnosed with ES by my TMJ doctor and I am waiting to hear from the specialist to get my 3D Cat scans done. I just want you to know that I’m not sure if your migraines are related to ES but if they are I have the complete same symptoms when it comes to the migraine pain. Only difference is I’ve been getting migraines since I was about 7 years old.

I am currently on AJOVY, I think this is my fifth month of it, and I did get some relief from the migraines for about a month and a half but now they seem to have returned. I find a lot of the migraine meds work at first for me, and then they stop working.

Let me know more about your journey, it will be interesting to know if ES is related to these types of migraines specifically and if getting styloids removed would ease symptoms.

[Isaiah_40_31]

@petrichorrr - Welcome to our forum! I just read your profile information. I’m sorry for all the symptoms you have & for how long you’ve been suffering.

Myoclonus dystonia & palatal myoclonus can be caused by ES. We’ve got several members who’ve had one or the other as a symptom. It usually stops once the styloid(s) are shortened, hopefully as close to the skull base as possible. Lump in the throat or feeling of something poking in there are common ES symptoms. More concerning though are your headaches & dizziness which can be symptoms of vascular compression, most often of the internal jugular vein (IJV) between the styloid & C1 vertebra. There can also be soft tissues causing compression below that point.

Deoxygenated blood & toxins flow out of the brain through the IJVs. Freshly oxygenated blood flows into the brain via the internal carotid arteries. When the IJVs are partially blocked, the “old” blood can’t leave the brain as fast as its entering thus creating a situation of intracranial hypertension (high pressure inside the skull/brain). It’s the IH that causes dizziness, migraines, visual changes, tinnitus/pulsatile tinnitus & other nasty symptoms. Unfortunately, there are no doctors in CA who do surgery for this problem so our CA members who’ve been diagnosed with it have had to travel to the US, Turkey or England for surgery.

If you’re willing to post some of your 3D CT images (please remove any personal info before uploading them onto the forum), we’ll be happy to give our non-medical but experienced opinions as to what we see as radiologists & doctors often miss things that we know are relevant. Any information you receive regarding your imaging from us is not diagnostic but will give you more specific things to discuss with your doctor as you move forward on your ES journey.

[PaulineC]

Thank you so much for your message! It honestly makes me feel less alone knowing someone else has such similar symptoms, although I’m really sorry you’re going through this too.

It’s really interesting that you’ve had migraines since you were 7, whereas mine only started around age 19–20. That makes me wonder whether Eagle Syndrome can be a trigger in some people while others may have both conditions independently.

I had exactly the same experience with AJOVY. It helped at first, then gradually stopped working. I’ve also tried many other migraine treatments with little long-term success, which is why I’m starting to wonder whether the migraines are actually secondary to something else, like Eagle Syndrome.

I’m still waiting to see the ENT/maxillofacial specialist, so I don’t have any answers yet. But if I eventually have surgery, I’ll definitely share my experience because I’m also very curious to know whether removing the styloids improves these specific migraine symptoms.

Please keep me updated after your 3D CT scan too! I’d love to hear what your specialist thinks. Hopefully we’re both getting closer to some answers.

[petrichorrr]

Hi Isaiah!

It is actually fascinating to me that dystonia is a symptom of ES, because that means likely my neurologist misdiagnosed me from the beginning. Nothing against her but I’m wondering what she’s going to have to say once I get my 3D CT scans done because she didn’t do any scans of my head as far as I’m aware for my ‘clicking’ and you would think it would have been the first thing done. Trying not to be frustrated with the system but I’m here now and I’m pretty sure I’m on the right path for the first time in my life.

I’m not sure about surgery either in CA. I’ve read what it seems like some people did get surgery as late as 2025 but they had it done intraorally and I want it done externally. Seems like less complications overall, and more likely to get as close to the skull base as possible. I’m not sure who this specialist my TMJ doctor referred me to is but I will keep the MODs updated so you can keep your lists of doctors as fresh as possible.

As soon as I get my 3D scans done and access to my panoramic x-ray, I was going to post them on here. You guys aren’t radiologists but you know what to look for it stuff that radiologists miss and I know that will be handy in advocating for my own medical care.

I’m honestly scared, but I’m so glad I have a diagnosis now and that I found this forum so quickly because I already feel less alone. Thanks so much already!

[petrichorrr]

I feel so grateful in finding this forum. I agree that I wouldn’t wish these symptoms ON ANYONE, but it is so nice for once in my life to not feel like I’m crazy or alone. It’s also helpful because a lot of people have been able to put into words the feelings that I can’t describe to my doctors so I’m looking forward to meeting with them again and being able to describe know this is EXACTLY how it feels.

Let us know how it goes with the ENT/maxillofacial specialist. It’s interesting to follow peoples journey regardless.

[Isaiah_40_31]

There is a doctor or two in CA who do transcervical ES surgeries, but none are in Ontario. Dr. Pereira is potentially the most ES knowledgeable doctor in Ontario, however, he doesn’t do ES surgeries. He does place stents, & we’ve had at least one member who had a stent placed prior to her ES diagnosis, & that has left her w/ some headache issues now since the IJV on the side w/ the stent cannot be decompressed. She came to the US & saw Dr. Cognetti for surgery.

[Kmarty14]

Gosh, I could have almost written this myself. The migraines. The septoplasty. The Eagle Syndrome.

I’m kind of at a crossroads right now with it all. I got diagnosed with Eagle Syndrome at the same time I got the news that my severe overjet and overbite may be causing my headaches and that jaw surgery is recommended. So I’m kind of sitting and weighing my options between jaw surgery and styloidectomy. As they’re both risky surgeries, I’ve decided to sit with the decisions for a while and do some research.

[Isaiah_40_31]

@Kmarty14 - If you’re willing to post some pictures of your CT on the forum, we can help you better understand what’s going on in your neck. If you’d prefer not to, I can take a look at them via a private message & can annotate & describe what I see. Though I’m not a doctor, I have a lot of experience looking at imaging & can at least give you some food for thought & info to discuss w/ a doctor that you may not have just from the radiology report & whomever diagnosed you with ES. With migraine level headaches, you could possibly have IJV or Carotid compression which would be of greater urgency to take care of than jaw surgery.

If you decide to post images, converting your CT slices to 3D is most helpful. You can use radiantviewer.com for PCs or Bee Dicom Viewer App for Macs. The axial CT slice at C1 level is also something I can read & could be helpful in providing you with better information.

[Jules]

Good idea to do some research, and maybe a second opinion too if that’s possible?

[PaulineC]

Thank you for sharing your story. It honestly sounds like we’re going through such similar experiences. I’m so sorry you’re having to make such a difficult decision. Having to choose between two major surgeries is incredibly overwhelming…especially when both could potentially explain the same symptoms…

I completely understand why you’re taking the time to research before deciding. That’s exactly what I’m trying to do as well. In my case, I’m hoping to find a specialist who can really help determine whether my symptoms are primarily coming from ES or whether something else is contributing before considering surgery.

I really hope you find the answers you need and that whichever path you choose brings you relief. Please keep me updated if you do decide on one of the surgeries—I’d genuinely be interested to hear how things go. Wishing you the very best.