I’m 35yo Mum with 2 kids living in Western Australia.
Recently diagnosed with Left sided eagle syndrome and IJV compression. My left styloid is around 6cm long and the IJV is compressed between the Styloid and C1. My right Styloid is also long but it is not causing pain because the nerves and veins don’t appear to be impacted on that side.
I’ve been getting pain, dizziness and extreme fatigue for a long time, but it all seems to be getting much worse lately. I’m getting ringing in my left ear and some facial numbness and nerve pain on the outer corner of my eye and eyelid almost like I have a stye.
I also have been waking in the night with my heart racing so fast and feeling suddenly nauseated. Sometimes I wake up with a numb arm. I’m really foggy struggling to focus and think clearly. I can’t do much but rest most of the day because I get headaches and horrible pain, and I’m limited with the positions I can have my head and neck in and can only sleep on my right side.
Has anyone had this pain on the corner of the eye and palpitations and was it related to the vagus nerve or arterial?
I am supposed to be getting Styloidectomy in the next 2 months and I’m hopeful it will help to alleviate a long list of uncomfortable symptoms. Also any advice on how to sleep to avoid the gnarly night time symptoms?
Hi, I have sent a bit of info with a pm for you, but you might find this discussion by @GrnyAny helpful: Successful Surgery for severe Vagus Nerve Compression - General / Eagle Syndrome Stories - Living with Eagle
There’s lots there about vagus nerve compression symptoms…
Pain in the eye can sometimes be from carotid artery irritation, but also from Trigeminal nerve irritation- this and the facial nerve are often affected by the styloids. Here’s an image of the TN so you can see where pain can be felt:
I do get aching in my eye from this, so it might be an issue for you? I do get dry eyes too & have to use eye drops, don’t know if you do? There are nerve pain medications which can help, it might be worth trying? There’s info in the Newbies Guide Section about treatments.
I found sleeping propped up with a wedge pillow and a few other pillows helped with the head pressure, I used a V shaped orthopedic pillow/ nursing pillow too which helped take the pressure off the sides of my neck. Amitriptyline helped me with the nerve pain, & this does make you drowsy so it helped with sleeping as well! Sleeping propped up after surgery is advised to help with swelling, so if you try it now at least you’ll be used to it!
Brain fog is common with IJV compression, it’s improved for me since surgery.
Hope this helps!
Hi there Jay! I don’t have too much to add that can help you for ES, but just wanted to say hello and send my best wishes to another Western Australian! I had surgery for clicking larynx almost 5 months ago with Dr Lewis, and i believe someone else had styloidectomy with him also just recently. Can I ask who you are seeing? Not many Perth Doctors see this from what i hear.
Thanks for chipping in @F_t , I did let Jay know you’ve recently had surgery in Perth by PM, I’m glad you’ve reached out, & hope all’s going well for you
Hi F_t
Thank you. I am currently waiting to be assigned an appointment with a surgeon at Fiona Stanley’s ENT Dept but also on the list for a phone consult with Michael Elliot in Sydney for a second opinion.
I’m hoping to have surgery within the next few months.
How has your recovery been going? I hope you are feeling better after surgery.
I feel you completely. Sometimes I feel like every cranial nerve in my neck is being compressed. I get really bad pain behind my eyes, not a migraine or headache. I get really bad ear pain and I also experience tachycardia in certain head positions. I have recently been getting heart palpitations of a night when I get into bed too. I have right sided jugular compression but believe my nerves are being compressed on both sides. The only position I can sleep in at night now is on my back with a cervical pillow. I do not even attempt to sleep on my sides anymore bcos the pain is awful. I wish you well and hope you can be relieved of your symptoms soon!
I don’t know any of the surgeons at FSH, but i know that Hollywood hospital has a great food menu! Highly recommend the mac and cheese with strawberry mousse after throat surgery! It’s the little things. I’m so much better after surgery, still some slight bother but nowhere near what it was before. My dizziness has actually decreased as well, which was unexpected. Dr Lewis did surgery the day before me on venous compression, for a woman getting dizzy when she turned her head. I’m not sure what his wait times are, but it may be worth contacting him to enquire?
