Hi im so grateful to everyone here who has helped me. It has only been a week since i was told eagles was suspected and i am on the nhs wait list. I wanted to ask a question without sounding too miserable…im really struggling with ear pain and all kinds of horrid symptoms but eye pain is really bad and i wanted to ask how people coped for so long with their symptoms and if they suffered everyday…i think im just checking that feeling this rubbish is a normal part of eagles.
Many thanks, so grateful to this supportive forum
A few things you can try, @JoJomoo, are sleeping with your head elevated at night, icing your neck (15 min on & 45 min off), & if that makes symptoms worse, try heat.
Getting an Rx for a nerve pain medication such as Gabapentin, Amitriptyline or Carbamazepine has helped many of our members though it can take several weeks to build up in your system to the point it’s helpful.
If you have symptoms of IJV compression, taking a blood thinner can also help relieve symptoms but those are usually a prescription.
I do sympathize as I had terrible pressure in my left eye. The pressure was so bad, it felt like my eye was being pushed out from behind & I would check the mirror several times a day to make sure it was staying put. That symptom stopped after my left styloidectomy.
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@Isaiah_40_31 thank you so much for this support. Of all my symptoms…painful electric ear…tinitus. tongue numb. Inside my pallette of mouth pain/numb…a constant feeling of domething in my throat the worse is my eyes. My eyes feel like they cant focus and like the muscles pull my eyes inwards. The pain and preassure behind my left eye. I cant take bright lights and its like if i go shopping and qalking through the isles…its like its too much visual information…does that make sense??
That’s so rough for you…worth trying the nerve pain meds at least to see if you can get the electric ear pain reduced. @TheDude did post an article about Gabapentin which is often prescribed for nerve pain, although I do know lots of people have been fine on it & it’s helped. Amitriptyline has helped me with nerve pain, it can take a couple of weeks to build up enough to start working.
Have you had your eyes checked? With vascular ES if the jugular veins are compressed it can increase the pressure in the brain and compress the optic nerve, so might be worth getting your eye pressures checked at the opticians to be on the safe side?
Some people have tried muscle relaxants and they can help too. Heat helped me more than ice but I think usually more people find icing as @Isaiah_40_31 says helps…
Sending you a hug 
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Hi, getting some migraine blackout glasses may help you manage your light sensitivity when in bright lighting. I found articifical light was worse than daylight for sensitivity.
Seeing an opthomologist for eye checks and monitoring your eye pressures is sensible. Pressure in my right side with compression is always higher than left.
Get your GP to refer you to good eye hospital in NHS, who may send you to Moorfields Eye Hospital in London, a leading Center.
Western Eye Hospital on A40 near Baker St is worth considering for review as has NHS walk in service 7 days a week.
I found using eye drops they use for glaucoma patients to lower eye pressure was helpful sometimes but tricky to get hold of drops.
Some members had temporary vision loss episodes, like I did, but vision normally returns.
Take care. D
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@Jules thank you so much. Such a supportive site. Im struggling so much. My entire left eye orbit feels numb and pain at other times. This truly sucks! Am i right in thinking you are a success story? I so hope so. X
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So my symptoms before ops were very extensive as had CCI & JV bilateral compression at C1/styloid. This included eye symptoms, hence my reply to your eye questions. I hope you manage to get some meaningful help from medics soon to improve your symptoms. I know how truly awful the symptoms can be so you have my deepest sympathy at this very difficult time. Take care. D
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Yes, just having the first side removed improved my vascular symptoms/ IH symptoms massively. Nerve pain / tingling & numbness improved but hasn’t completely gone- I was very lucky!
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@Jules i do love hearing positivity. This is truly so challenging and utterly miserable. Did you have any throat feeling issues? What is IH? One symptom i feel confused about and maybe even not related butcwant to ask…when i swallow like just saliva its like that bit of my throat/oesophagus is numb and like there is a strange creaking sound in your chest/oesophagus…so grateful for your time
@JoJomoo - IH is intracranial hypertension (high pressure in your brain due to the reduced blood flow & possibly increased cerebrospinal fluid (CSF). It’s a common side effect of jugular vein compression & is what causes visual changes, brain fog, dizziness, pulsatile tinnitus, & other symptoms.
The numb throat/esophagus feeling could be from your glossopharyngeal &/or vagus nerves being irritated by your elongated styloids. Throat symptoms are common. As far as “creaking” goes when you swallow, we’ve had a number of members mention popping or snapping sensations when they swallow. Perhaps yours is similar but less intense? Once the styloids & stylohyoid ligaments (if calcified) are removed your throat/esophagus symptoms may lessen or go away completely.
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I didn’t ever have the common symptoms of poking in the throat or difficulty swallowing! @Isaiah_40_31 has answered your other questions well 
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@PatientD
Hi
Hope u are well. May i ask about your eye symptoms…
Did you feel pain behind your eye?did you feel like your eyelid eas numb? Did around your eyes feel pressure and squished and ache?
My muscles of my eyes feel like they are crossed and hard to focus…
So grateful 
jo
Hi, I will try to answer you but would urge you to seek medical eye expertise as a high priority.
My eye symptoms led to left retina detachment. I had to have emergency eye surgery to save my left eye sight. This involved replacing lens & putting gas inside eye, causing loss of eyesight for 1-2 weeks until gas went. My left eye is ok now for distance, but I can no longer read with that eye without glasses. My brain now closes my left eye if I try to read.
My right eye has higher pressure still, and my vision is darkening, but medics do not know why.
If eye pressure is high enough medics realise optic nerve can be damaged. But I do not think they understand yet how JV compression affects eyes in our patient group.
My surgeries gave lessened pressure in left eye, but right eye remains a concern as pressure on right side of brain (& eye) remains higher.
Past symptoms-bloodshot/watery eyes, high pressure sensation, eyes watering, light sensitivity- probably others I forgot. D
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Ps. I had temporary vision loss on one side more than once, but vision usually returned within 24 hours. D
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@PatientD thank you so much. I went specsavers last week. My prescription has worsened over the last 8 months that suprised her. 2021 i had perfect vision. 22 i needed glasses. 2023 i needed new glasses and again now. I have severe dry eye…my pressures were ok the lady said. I have a new stigmatisation?? Is that how u spell it? In my right eye. My eyes are just so so painful. Its all day everyday. They feel like the muscles are strained. Blurry. Hard to read. And if i do read my left eye wants to close. My leftveye orbit feels numb. Its like ive screwed them up tight feeling when i havent. If i lay flat my symptoms worsen. I am being referred to neuro eye.
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I’m glad to hear you’re being referred to a more specialized eye doctor @JoJomoo. Your eye problem sounds pretty serious. I hope the new doctor is able to determine what’s causing your pain if it’s not pressure from nerves being caused by your styloids (or even if it is!!). Please let us know what you find out. I will pray for you to get an accurate answer & helpful solution.
Good that you’re being referred to a specialist, it sounds quite a worry…my eyes are very dry, it started at the same time as the ES symptoms ramped up so I think there’s a connection, I’m not sure if it’s maybe the Trigeminal nerve affected as that does innervate the glands in the eyes, or whether it’s caused inflammation and possibly an autoimmune response like Sjogrens Syndrome…I use Xailin eye drops which you can buy OTC now, they really help. Have you been prescribed eye drops?
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I was tested for sjogens and all ok. I have eye drops just for dry eye. I kind of felt better when i come on this forum and saw others write they had visual symptoms…(sorry that sounds awful) i guess it helped calm me. My eye orbit feels numb but then most of my symptoms are numbness the only pain is my ears, preassure headaches on temmple and back of head and my throat but otherwise im more numb…my sternocleidomastoid goes electric or numb and my trapezius is horris electric. My tongue was my first symptom as half numb and hurts undernneath. But my eyes are something else…just so painful and pain behind eyes. When i read its like the eyelid feels numb snd wants to close. My focus is awful. Specsavers last week checked them. Its just an awful symptom. I think it was you @jules who had eye symptoms?? Were any like mine? X
I had eye symptoms - left eye had tremendous pressure feeling behind it like something was trying to push my eyeball out of the socket. It was so strong I would check the mirror or touch my eye several times a day to make sure my eyeball was staying in the socket.