First off, I am grateful to have found this forum as it seems it is filled with kindness and information. Thank you for allowing me into the group!
My symptoms first started three years ago. At the time I was living on the road rock climbing more days than not, which involved me looking up for long periods of time. After a few months of this I yawned and heard a loud crack in my right TMJ. I believe my right disc displaced and afterwards I would have cracking and pain for months but nothing too serious. Six months later I completed a cross country cycling trip over the course of two months. During that time my left disc displaced and my jaw shifted half a tooth length to the left. My neck was also in so much pain due to being craned down and forward for two months while cycling. Even though my symptoms were getting worse, I finished the trip and decided to deal with it when I got done.
Afterwards, I saw a dentist who took an x-ray of my neck and head and told me that my problems were stemming from a loss of cervical lordosis in my spine. My neck wasn’t a reverse curve yet, but it was very straight. Over the next two years I continued to deal with jaw and neck pain. My occipital muscles have been very tight and painful too. I am also hypermobile and have been my entire life although I have never been screened for Ehlers Danlos. I have a track record of getting joint injuries quite often.
This past spring everything has gotten exponentially worse. I started getting little bilateral zaps across my cheekbones that eventually turned into very painful zaps. My primary diagnosed me with trigeminal neuralgia and gave me carbamazapine which I take as needed and helps somewhat. I can touch my face and cheekbones and nothing happens, but the zaps are random. I also get occasional zaps on my eyebrows, chin, and tongue. Sometimes it feels like there is a small wriggling worm in my tongue. I also started experiencing dizziness and blacking out when I stand up. My blood pressure is very low (was 90/42 a few weeks ago) and I was also diagnosed with POTS. My neck has been bothering me a lot as well, it crunches when I turn my head and I have burning in my occipital area. Many days I find it hard to think, concentrate, and speak, my words are often significantly slurred. I’ve always had tinnitus my whole life but it seems to have gotten louder. My jaw has been locked for months now, I can barely open two fingers.
I had an appointment with an oral maxillofacial surgeon two months ago to address my jaw pain. He took a pano x-ray that showed my condyles to be in normal condition but I noticed two long protrusions that looked like styloids. I know it isn’t a cbct scan but the image seems to show elongated styloids.
All this to say, I am curious about the possibility of having Eagle Syndrome. Do my symptoms match? Does my pano look suspicious for Eagle?
Welcome, @cmh376! I’m sorry you’ve got such nasty symptoms but am impressed w/ your physical endurance & athleticism! I removed your name from the image you posted to protect your privacy.
Your styloids do look long & somewhat thick. The left one is especially pointed though the right side looks a little longer to me so they definitely could be contributing to the symptoms you have.
Please try to get a CT scan of your head & neck. MRIs aren’t as good because they show the soft tissues which often cover up the styloids at least to some degree. An ENT may be the most helpful when it comes to getting a referral for a CT.
@cmh376 - I need to add two bits of info re: the CT scan - ask for it to be a CT with contrast as that will show the local veins & arteries which may help to see if compression of the IJV or ICA is a problem, and if you notice your symptoms get worse with certain head positions (looking up/down or left/right, etc, ask to have the scan done in that or those head positions. Sometimes vascular compression isn’t visible with the head in neutral position that’s normally used for CT scans.
Hi, & welcome to the site!
I agree with @Isaiah_40_31 that your styloids do look a bit longer than average, & are quite angled & pointy at the end , so I think it’s worth looking into an ES diagnosis based on that, a CT would be your next step…
Obviously POTS will contribute to dizziness, but ES can also cause that, & given you find it hard to concentrate & have slurred speech it could possibly be that you have Vascular ES- compression of the Internal Jugular Veins can cause increased head pressure and can result in similar symptoms. (I had this, & felt like I was a bit drunk all the time- off-balance, had to really concentrate to follow conversations etc) My vascular symptoms started after I was doing lots of cycling & that head forward position caused a prolapsed disc C5-C6; I already had ES causing nerve pain but not the vascular symptoms.
I’ve not been on carbamazepine, & I may well be wrong, but usually the nerve pain meds have to be taken for a while to build up enough to alleviate pain, do you find it helps you enough taking it as & when you need it? Useful to know if it does help you like that, I don’t want to be telling members wrong info!
ES commonly affects the Trigeminal Nerve and the Facial Nerve, so it could be one or both of these are being irritated & causing your pain.
We have had some discussions about military neck & how it could possibly contribute to ES, as well as exercises to help with this, here’s a link: “Military neck” (loss of cervical lordosis) relation to Eagle’s - the missing link? - General - Living with Eagle
Hope that you’re able to get some answers & treatment…
