Hi,
Sounds like you’re really getting bombarded with symptoms right now!
I guess it’s understandable your doctor wants to get all the info together before an official diagnosis, & good that he’s exploring other diagnoses…we’ve had quite a few members with POTS as well as ES. It could be that you have GPN ; ES is listed as one of the causes, so that doesn’t rule it out. There are nerve pain medications which can help with that if you’ve not tried any- like Gabapentin, Lyrica, Amitriptyline, Carbamazepine. They can take a couple of weeks to work , & you might have to try a couple of different ones until you find one that does help, but it might be worth looking into.
Are your vestibular exercises not helping this time? One of our members did vestibular rehab, which he found helpful I think, here’s a link to the discussion to see you’re not alone!
Chronological Symptoms and Events of My Eagles Syndrome - General - Living with Eagle Have you ever tried medications for labrinthitis/ Menieres? I don’t know if that would help, Betahistine for example? That can help with nausea too I think.
It could also be a symptom of vascular ES, so might be worth getting a CT with contrast when you’re having your CT done, if that’s possible? And if you notice the symptoms worse with certain positions then sometimes it’s possible to have the CT done in that position, not sure how amenable the radiologist will be though?!
We’ve also had I think a couple of members who’ve had a diagnosis of semicircular canal dehiscense, not sure if it’s linked to ES- I had a quick search to see if there’s any useful info for you in the past discussions, but it’s just mentioned alongside ES symptoms by a couple of members.
I had bilateral compression of the jugular veins, & developed Intracranial Hypertension- we’ve had alot of members who’ve had that especially recently. Sleeping semi-upright helped me a bit, other than that it was only the surgery which helped I’m afraid! I felt constantly a bit drunk & off-balance, & had head & ear pressure.
As for the nausea, that could be the dizziness, or the vagus nerve can be compressed by the styloids too, & it can cause digestive issues.
I hope that the CT gets done soon & that you get some answers!