Hi Everyone - so happy to be part of this wonderful group of people!
I was thinking that when I saw my doctor and he felt the bones poking into my throat behind my tonsils and palpated under my jaw, especially on the right, that a presumptive diagnosis of Eagle’s syndrome would be established and then a CT would be ordered to confirm. The CT is pending, and my doctor’s differential diagnosis included Eagles, glossopharengeal neuralgia, multiple sclerosis, vestibular migraines, and postural orthostatic tachycardia syndrome (POTS).
Summary of symptoms of current problem:
45 yo female, woke up on a Sunday Oct. 2019 suddenly dizzy and nauseated. Previously was fine other than unexplained coughing attacks over the past decade or so. Only medications were thyroxine and spironolactone (for cystic acne). The dizziness did not resolve and was exacerbated with head movements. The following day I went to the ER as recommended by my doctor – no explanation was found. My doctor tried a course of antibiotics followed by some strong allergy medications, but the symptoms did not improve. The nausea subsided of the first couple of days but the constant dizziness made it difficult to walk and sometimes felt drunk / lightheaded and sometimes like rocking on a boat. It was associated with right ear tinnitus of a high pitch varying from mild to medium intensity. I also had fairly consistent right ear pain and pressure. No hearing loss was detected. Sometimes there would be pain in my right tonsil, right base of tongue area also. Sometimes I would have a sensation of chills and irregular heart beat or skipped heartbeats. Eventually I went to a private pay vestibular physiotherapist and was tested (goggles). She determined I had vestibular neuritis on the right side and prescribed vestibular exercises. By early February I had recovered from the dizziness and was essentially cured. Only the right ear pain and pressure remained.
September 2020 I again started to feel moments of dizziness similar to prior episode for just a few seconds with no apparent trigger, but by October they had increased in duration and frequency such that I was back to dizzy much of the day, if not all the time. It was generally a rocking on a boat dizziness that would occasionally become very intense almost pulsating. It is worse at rest or sitting still and increased with closed eyes. The occasional sense of chills also returned. Brain fog and lightheadedness would come and go as symptoms would vary in intensity day to day. Mornings would often be better than afternoons and evenings but not always. I did not have any whole normal days. The tinnitus eventually also returned by January 2021 but was softer and less frequent. Hearing was checked as still normal. I fell and broke my ankle mid-January, and believe that my unsteadiness likely played a role in this event. Throughout this I have continued to work, but did cut back my hours significantly. I enjoy my work and would like to continue, but this condition is fairly debilitating at times. Within the past month, nausea has been a problem. There is also a very sore nodule area under my right jaw, which when pressed refers pain to my familiar ear pain area. With possible tender right neck lymph nodes. I’ve also noted pointy bones behind my tonsils protruding into my throat which give a sensation of something in my throat. Intra-oral palpation shows the right bone is very tender and when pressed refers pain to my ear – the pain I’ve been feeling. The left bone is not tender. I have noted recently that looking to the right, looking down or laying on my right side may sometime increase symptoms. Currently the right styloid process, right ear and right under jaw area are all very sore and tender. I notice a whooshing sound of air on the right when I open my mouth quickly, which has come on in the past month with the tender nodes, nodule and nausea. I currently feel uncomfortable turning my head too much to the right and can sometimes reproduce the symptoms with poor head positioning. Lately it has been hard to find a comfortable position that doesn’t illicit symptoms. However, the brain fog has cleared and I feel I’m a bit better, but still unsteady and feeling not myself.
I’ve had a brain MRI, CT scan of vestibular system for semicircular canal dehiscense that has many of the same symptoms (unfortunately didn’t show total styloid length but did show styloids until the scan stopped and did’t go low enough) and an ultrasound of neck nodes. These have not revealed the cause of the symptoms. H&N X-rays for Eagle’s syndrome were done on April 6, 2021 but for some reason they could not see the styloid. I question possible vascular compression of the jugular vein or carotid artery and/or damage to these vessels on the right as a possible cause of the lightheadedness and drunk feeling. Has anyone discovered anything I can do while I wait to lessen the symptoms? Thanks Everyone!!!
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!
That is super helpful information! I’ve not tried any of those medications yet, so I will mention those to my doctor in the meantime, while waiting for the CT. I need to check to see if the CT is with contrast and it is a good idea to see if there is vascular compression, if possible. It is also interesting that you had increased intracranial pressure that led to the drunk, off balance feeling and I wonder if I have the same cause. How did they determine that your pressure was increased? Was it through a lumbar puncture? Maybe I should get the same test and see. I’m so glad you were helped by surgery! Did you have the external approach? How was your recovery?
Thanks again for your help! I will try sleeping semi-upright and see if that might not help also. I am doing some of the vestibular exercises, which do help but haven’t solved the issues yet (except for the quick head turning one because if I do have Eagle’s then that one might not be the best for the anatomy I think.)
I hope your surgery is a success and you’ll recover quickly! Please keep us posted! What symptoms did you have related to your POTS? I haven’t done as much reading on this diagnosis.
I’ve had POTS symptoms since 2012 and got diagnosed with it in 2016. I’m actually hoping I don’t have POTS and maybe it’s all eagles. But I have chronic dizziness which is always present but more so when I’m exerting myself. Blurry vision in my right eye, shortness of breath again upon moving around, chest pain, racing heart when changing positions and just generally feel very unwell. No fun. Thanks for the well wishes!
Just want to add a couple of comments in addition to the great information Jules gave you. We have one member who was Rxed a blood thinner when it was noted her jugular vein was partially compressed by her styloid. The blood thinner helped dramatically reduce her symptoms from the vascular compression. I believe she is still planning to have surgery, but the blood thinner helped put off the immediate need for it.
The vagus nerve when irritated can cause gastrointestinal issues, heart & blood pressure dysregulation, body temp dysregulation, breathing problems, swallowing problems among other things. An irritated vagus nerve is pretty common with ES. I had blood pressure, heart & breathing challenges especially when exercising until my styloids were removed. For the most part everything returned to normal after my recovery.
I’m sorry for all the symptoms you’re suffering. Hopefully a CT w/ contrast(att empt to get it w your head turned to the right since that exacerbates your symptoms) clearly shows what all is going on.
I’ll be praying for the correct testing & subsequent necessary medical interventions will come together for you soon.
The IH diagnosis was mentioned because of the symptoms; they did suggest maybe a lumbar puncture, but I wouldn’t want to have that done if not absolutely necessary- luckily when the CT came back showing the jugular compressions the doctor was happy that it was the cause & I didn’t need any more investigations, & I was put on the list for surgery.
I had external surgeries, the styloid was taken back to the skull base as it was compressing the jugular vein along alot of the styloid’s length. I was lucky & the recovery wasn’t too bad at all, it does vary though.
Hope you can find something to help you while you wait…
Oh no, that sounds just awful. I hope it is all Eagles and you’ll be feeling yourself again after the surgery! I should try and pay more attention to see if my racing heart is also positional. This is interesting, but no fun at all. Take care and I’ll be hoping for the best for you!
That is interesting about the blood thinner. I will certainly also mention that to my doctor. I’m not sure if the CT he ordered is with contrast, so I’d better look into that further.
The knowledge about the positional differences is helpful and when I feel things coming on I shift to another position, which has been helpful to not escalate the symptoms further and I’m happy to report so far I’ve been able to avoid the brain fog with this strategy, so hopefully can hang in there until the testing is completed.
Thank you again for all of the information. You’ve been truly wonderful and such a help!! Just realizing that others have suffered with this and survived to return to normal or near normal health is such a relief. Also, finding this group has helped me be certain I’m not going crazy or being a complainer etc. and has been real bright spot in this journey. Thanks so much!!
That is good because I really would like to avoid a lumbar puncture too! It will be super helpful to have that CT, so I appreciate your tips and help with the wait. I’m also happy to hear that your recovery wasn’t too bad - that’s encouraging!
Thank you again for your help and support during this!!!
