Hi everyone, grateful to be a part of this support group, I’m new here and here is my story.
The host of my numerous symptoms started over 6 years ago after I had my first son. Symptoms came out in the midst of extreme life stress and postpartum health issues. It started with strange burning/numbness on the left side of my face and left arm. After being checked out with a local PCP for stroke it was ruled out and I received a B12 shot that seemed to have helped. This symptom reappeared in about a month and never left. I experienced weakness all over the body, “heavy” left sided leg and arm, “drooping” sensation in the left side of the face without actual drooping, tingling etc. Later numbness turned into a vice grip sensation in left upper molars and burning pain in those teeth that would come and go. The pain seemed to increase with turning head to the left. After about a year and a half and improvement with stressors in life a lot of symptoms subsided and I was able to get on with my life although I still experienced strange symptoms but they weren’t as disruptive of my life.
3 years ago I had my second son with my new husband and symptoms came back immediately with vengeance and never calmed down plus spread to the right side of my face and head. I’ve seen a host of providers including 8-9 neurologists, 2 very prominent neurosurgeons, physical therapists, regular physicians, massage therapists, Neurologic chiropractors, upper cervical chiropractors, nerve and other types of medications, several TMJ specialists and orthotic treatments, ENTs, have had MRIs of the brain, neck and thoracic spine, CTs, ultrasounds, even lumbar puncture to check for MS, everything was normal which as I’m sure you understand is beyond frustrating. Obviously many times it was blamed on anxiety, stress, depression. All of this with no sustainable relief with symptoms being all over the place most days absolutely horrible and some days for unknown reason better and even good enough to enjoy those days as few as they are. I looked into Eagles out of desperation seeing overlapping symptoms as of course with many other Craniofacial disorders. I had my PCP order a CT of the neck that showed elongated and calcified styloids. I don’t have the most common Eagles symptoms of throat pain or foreign sensation in the throat but my understanding is it’s not always present. Below is my current list of symptoms:
severe daily headaches that are mainly in the frontal area (in/behind eyes, cheeks/sinuses, especially left cheek spreading to the eye, temple and occipital area)
deep burning pain in the left maxillary area, under the cheekbone that gets worse as the day goes by and worsens with talking, eating, turning head to the left. This pain used to be felt in the molar, after it was removed the pain remained but kind of moved into the soft tissue. On and off I get sharp stabbing pain in this area that can go up to my eye as well. Sometimes it turns into a migraine
muscular pain all over the face on and off, mainly in cheek/masseter muscles, but also jaw, chin, eyes, temples with muscle spasms
hearing loss in the left ear
sound sensitivity in the left ear with echoing in response to noise over a certain threshold (echo sounds like a microphone tap), I hear this echo even if I scratch my head near that ear or lightly touch the inside of the ear.
left sided throat/palate sounds when talking or swallowing, it’s hard to describe the sound, kind of like snapping or clicking
random popping sound in the left ear that feels like a twitch at times, can be triggered by eating, speaking, smiling wide, crying, seems like anything that stretches certain muscle on the left side of the face
on and off dizziness/off balance weird feeling like a sensation of being in jelly (I had one episode of vertigo this year triggered by turning head to the left while laying down but mainly it’s this random weird dizzy lightheaded sensation)
twitching all over the face on and off, currently left eye spasms when closing it tight and opening
other strange nerve sensation all over body that I assumed were from constant state of fight or flight or vagus nerve involvement, for example light scratching of the skin sends weird spasms all over the skin surface etc
constant pressure in the face and head that fluctuates from mild to severe
back of the head and face pressure gets worse when laying down or leaning on anything like a recliner or even headrest of the car seat
bending down increase pressure and face pain as well, for example while changing my son’s diaper or even slightly leaning forward while washing dishes.
I’m sure I’m forgetting something as I’ve had so many symptoms over 6 years and at times they would get better for no apparent reason and than get worse again. At some point I was even able to return to work last year but the symptoms did get gradually worse and I ultimately had to quit my job. I can easily say this mysterious illness completely ruined my life and deprived me of any kind of quality of life. It makes it more difficult not having a good support system as neither me no my husband have a family close by. My family is in Russia and his is in a different state away from where we live. He is my only supporter and provider paying for all the countless treatments that hasn’t worked and rendered us almost bankrupt, he even had to cash in all of his retirement funds at the age of 43 and there’s barely anything left of it. I’m currently undergoing another TMJ treatment with a neuromuscular dentist in hopes it’ll give me some relief but so far I haven’t seen any positive results.
My story sounds very dark and negative and I used to be the most positive person you could possibly meet but this ongoing battle took me to the darkest corners of my mind that I had no idea about. I hope with the help of the members of this wonderful community I can find some answers and even if what I have isn’t Eagles I could be pointed in the right direction. Thank you so much for reading till the end, and again I appreciate your kindness and support.
I’m sorry you are going through this but I can relate to a bit of it.
I had vascular ES jugular variant with IH symptoms, but facial pain was by far the worst.
I had debilitating frontal facial pain, like someone was jamming their fingers deep into my face and bridge of nose, as well as the feeling like there was a vice clamp around my head.
I had (and still have) burning, tingling and pinching in my face and scalp.
The severe pain has completely gone away since my bilateral styloidectomy. Whether it was direct nerve compression or indirect nerve irritation due to venous congestion, I don’t know, but what I do know is that surgery gave me my life back.
I’m not perfect now and still working on lingering pain, but I’m truly thankful for how much better I am.
Thank you for your response Elijah, I appreciate it. I can relate to the facial pain being by far the worse, and the vice grip sensation is awful, feels like something is pressing on my maxillary molars and back of the head and most of the time pressure is all over my face with never ending headaches and eye pain. Is there a link to your story that I can read so I don’t bother you with multiple questions? The only think I’ve done so far is a CT scan a year or so ago, trying to decide how to proceed. Thank you!
Hi Elena,
So sorry that you’ve been suffering for years & have had to spend so much money seeing doctors with no real help, that’s tough, but sadly not unusual on here
It certainly sounds like you have nerve pain; have the nerve pain meds not helped at all? Sometimes they can take a while to build up in your system, & it can take a bit of juggling to find one or two which help… It does sound like you could have vascular symptoms too- the vertigo, off balance feeling etc. I never had the typical symptoms like the foreign body sensation in the throat.
The best way to get a diagnosis is with a CT; you say yours shows elongated & calcified styloids, so given your symptoms it does sound as if it could well be ES. If you’re able to, it would be an idea to get a referral to a doctor with experience, here’s a link to the list: Doctor Lists – no discussion - Symptoms and Treatments / Doctor Information - Living with Eagle
There are a few in NE; you could use the search function to look for any discussions about them. We can’t say for definite that ES is the cause of all your symptoms, or that surgery would be a total cure, but I certainly think it’s worth pursuing…hope that this helps and you can see a doctor who can treat you
Thank you so much for the valuable advice, I’ll look into all the options. I’m currently in Kentucky as my husband has a traveling job so me and our 3 year old son are with him. I did call the office of Dr.Hackman today and asked my PCP to fax some paperwork over. He’s booking at 1st of January but I’m hoping to get on the cancellation list.
I have tried various nerve meds 6 years ago when it all started and gave them a long enough time to work but got nothing except side effects in return.
If you don’t mind me asking is there a link to your Eagles story? I’d be interested in reading about your symptoms and experiences on your journey with Eagles. Thank you again for all the support.
I’m afraid my story is dotted about all over the place! I’ll give you a brief version- I had bad tooth & jaw pain, coinciding with a salivary gland stone, had a new filling done & investigations, I was very lucky that a junior doctor spotted the elongated styloids & diagnosed ES. So for me it was pretty quickly diagnosed, although when I joined the site & read up on symptoms I realised I’d had some for years without knowing. I had a bad whiplash injury nearly 30 years ago which I think caused my ES. I was prescribed Amitriptyline which helped with the nerve pain in my jaw, so I felt I could live with the symptoms & didn’t pursue surgery, but a year later I had a prolapsed disc C5-C6, which I’m guessing shifted things in my neck a bit so I started getting vascular symptoms. I had bilateral IJV compression (diagnosed by a CT with contrast) which caused some intracranial hypertension symptoms (dizziness, off-balance feeling, difficulty concentrating, head & ear pressure & some weird sucking/ brain rolling up feelings!) & that was a bit grim, so I saw a UK surgeon I found out about on here & had the worst side done first. That resolved alot of the symptoms, & a year later I had the other side done. The vascular symptoms have pretty much all gone unless I get very stressed, I still have a bit of trigeminal nerve pain but the Amitriptyline helps with that, so the surgery has been great for me!
Dr Hackman has done lots of surgeries, so would be a good bet if you can see him. Alot of doctors will only do one side at once because of the swelling, but Dr Hackman does both sides at once, & those who’ve had it done seem to have done well, although temporary issues with the facial nerve can be quite common.
I’m so glad I’ve seen your post because I get quite a lot of this too and I have been suffering with it for 2 years and only to be told constantly that’s it’s anxiety, stress, tension, depression. Mine did start after a huge anxiety meltdown and some of my symptoms have gone but the pressure when leaning the head back that you describe is still with me. What I found out via my dentist is that I am doing what he called “posturing” with my jaw, I do it without realising, I sort of move my lower jaw back and forth and I also move an tense my tongue. This is a symptom of stress/tension and can cause quite a lot horrible symptoms like the ones you’ve described and I have caught myself doing this when the pain is bad. I am waiting for a referral for a CT scan (I am in the UK) because I believe I might have Eagle as well. However I’m also aware that muscle dysfunction in the hyoid area can cause similar symptoms, but I need the CT scan to know either way. Sorry about the long reply, it’s just that a lot of your symptoms are very similar to mine and I’ve never seen someone mention the back of the head thing before so I just wanted to say you’re not alone and these random symptoms are so frustrating because no one believes them or takes them seriously. I just keep being told anxiety or attention seeking.
Thank you for telling your story, I appreciate it. It’s so fortunate that you were able to get diagnosed so quickly. I can’t imagine how people go multiple years with severe symptoms without resolution or improvement. What makes it more difficult is the variability of symptoms that makes you constantly question whether it is truly Eagles or something else. Craniofacial disorders have so many overlapping symptoms that sometimes it’s hard to tell them apart. And in the case of Eagles surgery is the only definitive tool to diagnose which is a pretty radical diagnosis technique.
So happy you were able to achieve a level of relief that lets you lead a normal life. I can’t wait to be in the same place, I’m not even hoping for a full resolution of symptoms but enough to sustain a life where I can work and be a mother I need to be to my little kids. In the present state it’s impossible. Hoping for the better, fingers crossed
Hi Skatkat, and thank you for your comment, sorry you’re in the same boat with the symptoms and no validation from doctors, I know this too well first hand where it’s blamed on anxiety, stress etc. Although my symptoms did start amid horrific stress I don’t believe it is right to blame physical symptoms on emotional distress. Yes anxiety and stress do intensify or sometimes trigger physical response but they can’t be responsible for structural issues within the body. If there’s a link to your story and symptoms I’d love to read about it. I hope you get your imaging done soon and a proper diagnosis. You deserve a pain free life. Big hugs to you
Mine started in 2019. I had a massive panic attack and went to hospital because I was struggling to breathe and felt like I was choking. Since then, some of my symptoms have gone as I’ve calmed down (I had burning feelings in my skin, and very tight muscles) Some symptoms I’ve just got used to and know how to cope with them (the head pressure at the back of the head, vertigo, neck tension, popping in my nose, intermittent slapping noises when I swallow, popping noises in my throat and soft palate, random pains in the hyoid area) but I’d love to go back to my normal self. Before all of this I was really active, I ran 5k twice a week and went to the gym. Now I struggle through the days with random symptoms. I’m now calmer than I’ve ever been, I’m really lucky not to have any stresses in life at the moment but still have symptoms so I can’t accept the anxiety diagnosis. Neck issues can cause anxiety and after ruling out CCI/AAI, I’m convinced that Eagle is what it is.
Thank you for sharing your story. I do see we share more than one similar symptom. Especially those weird sounds that throat makes with talking or swallowing, I can’t adequately describe the sound except clicking/clunking/popping. I know healthcare in the UK is much more difficult to navigate with the referral system and such but I truly hope you get to the bottom of this and get the validation you deserve. This is no way to lead life in constant anxiety and pain. I know exactly how you feel, stay strong
@Elena & @Skatkat - clicking, clunking, popping when swallowing is often a sign of calcified stylohyoid ligaments either along w/ elongated styloids or w/o. We’ve had a few members whose styloids were normal length, but their stylohyoid ligaments had calcified extensively down to the lesser horns of the hyoid bone. This calcification tethers the ligaments & prevents normal movement of the hyoid bone thus they can’t move freely as needed when you talk, sing, cough, sneeze, breathe, swallow, etc. As a result you hear & feel the clicking, clunking, popping because these body parts that are meant to move freely can’t.
Thank you for this information, it makes so much sense. I would often feel like a loony describing this symptom to the providers I was seeing but none of them had a clue as to what it might be, neither of multiple TMJ specialists, orofacial pain specialists, neurologists, not even any of the several ENTs I saw back home in Nebraska. This gives me even more hope that I’m finally on the way to a proper diagnosis which is essential for the right corrective treatment. Differential diagnosis is what all Craniofacial pain specialists need more training in that’s for sure. Thank you again for this valuable piece of information.
Hi @Elena , I do suffer from facial pain & pressure around cheek/masseter muscles. It feels like that my cheeks are being pulled down and my temples squeezed usually at the end of the day and when I am upright (driving or standing). I also have the clogged ears (feels like I am under-water) but then I have bilateral mild to profound hearing loss. This is the most bothersome symptom and my face looks droopy when it is happening (makes me look like old). I wonder if increased pressure in the head is somehow affecting the mandibular branch of trigeminal nerve or whether a CSF leak is causing traction of the TN. BTW, I do not have any electric shock type sensation that is the hallmark of TN.
@Jules Did your cheeks droop? I mean since I was hit with this, people think I have aged. My face looks old and the skin sagging above the cheek. Not sure if this is related to constant masseter muscle spasms.
What is so weird is that, when I run on the treadmill for 20 minutes, the pressure pain on the cheeks and the pulling down feeling lessens. So this is the mystery?
Hi @KoolDude and sorry you can relate to my symptoms. My pressure in more in the cheeks and feels like a hot poker is pressing in at its worst, it’s unbearable especially of combined with a headache, sometimes I can’t tell where the face pain ends and headache starts. Pressure spreads to the eyes with headaches. For some reason sitting (on the couch or at the table or while driving) makes the pain worse, I feel better when I’m up and moving around. My ears don’t feel clogged but I do have hearing loss same as you and different sounds, like popping, crackling, sounds sensitivity, reaction to my own voice or outside noise. I’m certain that either styloid or the calcified ligament is somehow irritating maxillary branch on the trigeminal nerve, especially in my left cheek where it all started 7 years ago but back then I felt it in the teeth. I don’t have electric shocks either but occasionally I do get sharp stabbing pain Are you planning on having a surgery?
Hi @Jules, I’ve never had electric shocks either, but have had occasional sharp stabbing pain. Otherwise it’s constant or near constant burning pain. I wouldn’t call it boring lol but it’s not entertaining either It’s searing at its worst and I’ve didn’t resorted to applying cayenne pepper extract directly on my gums and capsicum cream externally to offset the nerve burning
Are you planning on having a surgery?
It’s searing at its worst and I’ve didn’t resorted to applying cayenne pepper extract directly on my gums and capsicum cream externally to offset the nerve burning 