New here. So glad I found this

Support
#1

I’ve been living with pain for two years and haven’t known why. I was told I have ES and then I was told I don’t. I’ve had a third opinion recently who confirmed ES.

I think a combination of that living with pain and not knowing why, plus maybe some effects of isolation due to Covid has left me with some pretty extreme health anxiety. Maybe even OCD. I havent seen anyone for it, but I know I need to. Has anyone else dealt with health anxiety as a result of ES? Is there anything that has helped? I’m so tired of being afraid all the time.

#2

Hi Elro89-

Anxiety of all kinds but especially focused on health seems to be a common thread for many of our members. Part of that is possibly because the vagus nerve (Cranial Nerve 10) is often irritated by ES. Anxiety levels are among the many body functions it controls, thus heightened anxiety is common w/ ES. We do have members that have found low-dose anti-depressants helpful when anxiety is severe. Anti-depressants are also a type of medication that can help nerve pain so the effect of taking this medication can be to help w/ anxiety & reduce pain. Having your styloids removed could help reduce your anxiety levels as your irritated nerves heal.

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#3

Hi & welcome to the site!
So sorry that it’s taken a while for diagnosis for you- sadly it’s quite common!
It’s been a difficult time for you- when I was first diagnosed I had some other health problems too, it was a battle to get some taken seriously & I must admit I was really anxious for a while & spending far too much time thinking about symptoms, googling them etc! That wasn’t in the middle of a pandemic, so I can definitely sympathise with you!
If you use the search function, & look for health anxiety, you’ll see it’s mentioned in lots of discussions, so hopefully knowing you’re not alone will help…
Here’s a link to the current Doctors List in the Doctors Info Section in case you’ve not seen it & need to see someone with experience of ES:
US Doctors Familiar With ES, Current List - Symptoms and Treatments / Doctor Information - Living with Eagle
& here’s a link to the Newbies Guide Section which has lots of info about common ES symptoms, what might cause them , treatments etc. Here’s a link:
Latest Welcome/Newbies Guide to Eagle Syndrome topics - Living with Eagle
Hope this helps…

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#4

Thanks for the kind replies. It’s been so comforting to read everyone else’s experience with this. Living with pain and never knowing if its neuropathic, psychosomatic, or if there is truly something wrong isn’t easy. I don’t celebrate anyone having this, but its nice to not be alone. :slight_smile:

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#5

This is an amazing support community. We’re so glad you’re a part of it Elro89. :gift_heart:

#6

It took almost 7 years for me to get a diagnosis and I had both vascular and nerve involvement…I was diagnosed in July 2018. Had my left external styloidectomy on October 30 2018. After jist 10 days I was able to swallow although it felt as though I had a large pill stuck on the right side…I just had my right one removed on 2-9-2021 after the pain spread to my teeth. It became unbearable…But the good news is that after a year post op for my left side my pain and almost completely subsided although I lost complete feeling to my left ear and I have a burning pain upon touch along my left jaw line…I too suffered severe anxiety because of it I was prescribed xanax for my ptsd and I learned to use meditation and aroma therapy to help me related…and still sometimes I get a sharp pain upon turning my head…I’m 29 years old and I hope I get the same relief as I did from the left side…Every case is different and every surgeon has a different approach…I’m sorry that it took years to get your diagnosis believe me I understand the hopelessness and frustration…Feel free to message me if if you have any other questions or concerns…I hope you can get treatment fast and honestly I recommend the surgeries over the medication for me they did not work and they had side affects of their own.

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#7

Welcome back, D907! It’s been awhile but I’m so glad to read your update. I hope you have complete recovery from your symptoms after your second styloidectomy. I, too, have some residual facial pain from my first one but it doesn’t slow me down like my ES symptoms did. I’m just so thankful for how much of a difference surgery made for me.

:hugs:

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