Help me understand what is wrong with me, please

[Jete]

Hello.

Thank you for adding me to this site.

I don’t know what’s wrong with me yet. I have been dealing with symptoms for about 6-7 years. But now for last 6 months I am in agony because I get bad vertigo. It’s getting progressively worse. Everything started with shooting pain in my right ear. Now I am having pain that wakes me up in the middle of the night.

Vertigo is triggered with certain head and arm positions, I can not do the dishes because I guess my muscles get tight and cut off blood flow… If I ignore my vertigo and keep doing what I’m doing I will have feeling like I will loose my consciousness. And then I lay in my bed feeling like I am on the bout for some time. But I also have stinging pain in my ear and under ear when I eat something hard, turn head, sleep at night, also pain in my throat. I have to regulate my head position even when laying down to avoid symptoms. Headaches, constant pain in my right aye, jaw, cheekbone even sometimes in my teeth. Tingling in face, nose, tongue. I am choking on food. I don’t know if it’s even the eagles syndrome, but since doctors are stuck and don’t know what it is, I have to research.

Also sometimes I am having bradycardia (heart is okay).

In 2022. I did position xray and I am having cervical instability. But doctors brushed it off…

I have done mri for head and neck (nothing found.

Doctors think it’s all in my head, but they don’t understand that my life is slowly drifting away and I’m getting worse and worse with every month…

I had car crash in 2018., and 2024., also I underwent tonsillectomy in 2014.

I live in small country in Europe. Doctors don’t know nothing about eagles syndrome. My gp refuses to give me referral for 3D CT scan.

Ear and throat doctors don’t find anything… Have done tests.

Ear and nose doctors are sending me to neurologists and neurologists are sending me to ear and throat specialists. They play football with me…

Please, give me some advice. Are those symptoms something similar you have experienced?

Is there someone who can tell me how my styloid looks on xray if I add it here???

Thank you in advance.

[Rosie]

Hello @Jete welcome. I have attached my OPG dental Xray and have marked my elongated styloid for you to view. Although this shows on the righthand side of the Xray, this is the left. An OPG is a panoramic xray used by dentists and can be the first indication of an elongated styloid.

[Rosie]

[Jete]

Thank you. Looks so small and tiny. Did dentist mention to you that your styloid is too big?

[Rosie]

@Jete I also had a car crash in 2017 and in hospital for 5 days with an elbow fracture which I needed internal fixation. My symptoms are left ear pain and fullness, constant high pitch tinnitus, pulsatile tinnitus, temple headaches, migraines with auras, split vision, neck pain below ear, pain at the base of skull and some swallowing issues. Have you an OPG that you can upload?

[Jete]

Sorry to hear about car accident

My dentist didn’t give me any xray.

I have only positional Xray but I can not add any pictures yet…

[Rosie]

@Jete I have also been going back & forth to doctors, Neurologist, dentists & maxillofacial and nobody picked it up. I was diagnosed with Migraines and stress related symptoms. It wasn’t until I got hold of my OPG and uploaded it here that I started to get answers. My Neurologist now agrees and I have been referred to a skull based surgeon.

[Jete]

you have gone through a long period of searching…

My hope is 3D CT scan. But only if I will get referral from gp.

I am mostly bed bound now because of vertigo and feeling that I will pass out. So doctor appointments ar hard for me.

But I don’t give up.

[Jules]

I’m so sorry that you’re feeling so ill & are struggling to get any treatment- sadly we hear stories like this all the time, it can take a fight, but usually members are able to get diagnosed and treated, so keep strong!

Many of us have had neck injuries from car accidents, and neck trauma is a known cause of ES as, is having a tonsillectomy. It does sound as if you could have vascular ES, as the vertigo is quite common with that, and feeling faint, especially if certain head positions bring this on. Arm weakness can be caused by the styloids pressing on the spinal accessory nerve, pain in your face could be either the facial nerve or the trigeminal nerve being compressed, and heart arrythmias can be caused by the vagus nerve getting irritated, or the carotid arteries. Choking is a classic ES symptom as well. There does seem to be a link between CCI and ES too…

So it’s certainly worth trying to get a CT, one with contrast, to see if your styloids are elongated. As @Rosie says, if you have any imaging, like the x-ray you had for instability, then you could upload it here- we’re not doctors but could have a look & see if you’re on the right track with ES.

We also suggest that if you can, to print off & translate some research papers to show your doctors, especially as there are several which are about vascular ES. Some members have sent their images to doctors abroad to get diagnosed as well, if you can get imaging done.

I hope that you’re able to find a copy of your imaging & we can take it from there…

[Jete]

Yes choking is one of the scariest symptoms. I constantly have feeling that something is stuck in my throat, but for years I thought it is because of my thyroid. But now that feeling is non stop and worse than ever…

I would love to add my Xray, but I don’t find option button for it.

[Rosie]

@Jete you are definitely in the right place here for help. I have only been searching for answers for a year, but like you there are many other members who have been searching for years to get answers. I had my CTA done through the NHS, what options do you have to get one done?

[Rosie]

Hopefully @Jules can advise on uploading your xray, I think your account has to be updated to allow this

[Jete]

I just need referral from gp. He didn’t give me yet, because he doesn’t know what eagles syndrome is…

[Jules]

When you start replying to a message , the text box comes up & there are icons at the top of it, the upload one has the upward arrow, you should be able to post images now…

Hopefully if you could show your GP an article or two and persuade them to order a CT with contrast for you

[Jete]

[Jete]

This is my xray.

[TML]

@Jete do you have any other xrays in the open mouth position? I think I see your styloids but I’m not 100% certain because it’s sort of fuzzy.

[Jules]

I can’t see an obvious styloid on there…like @TML says it may be just too fuzzy…sometimes we can see them really clearly but unfortunately not with your images @Jete

[Jete]

Hi.

Unfortunately no I don’t have, this is the only one from 2022.

[TML]

@Jete I think these are your styloids. But things are pretty fuzzy. It is possible that your IJVs are getting compressed between your styloids and C1 and/or styloid tips hit arteries when your head is in certain positions. Does your doctor know that your symptoms are brought on by head positions? Seems like medical negligence if they are denying you imaging when the imaging is what’s needed to get better. CT with contrast would be best.