Hi MsBearshark - I’m very excited for your upcoming surgery & have high hopes for a great recovery from your symptoms. I put your surgery date on my calendar & will be praying for you.
Please let us know how your surgery went when you feel up to it. 
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@McWelly - I agree w/ @vdm. It would be worthwhile seeing a retina specialist or ophthalmologist to get your retinas checked.
I went through a period where I had a lot of floaters then started “seeing stars” (prior to my ES diagnosis), & it turned out my vitreous humor was detaching from my retina (this can cause retinal tears but doesn’t always). Vitreous humor detachment is not uncommon as we age (often happens in our late 40s-50s). It’s a benign event unless the retina is affected but needs to be followed by an eye doctor until the symptoms stop ie detachment is complete. One month after my left eye went through this, my right eye followed suit. I was warned this was a possibility.
I’m really sorry for your gastric & oral problems/need for surgeries & especially that they are connected. I hope having your styloids removed prevents any future problems of those sorts.
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Thank you both, I did have a check up at opticians a few months ago and all was fine, including a scan of the back of the eye. I do get some floaters, age related bur again, no cause for concern was found. I guess when I get the neurosurgical appointment, they would look at all these things and not just one thing in isolation which has been my experience do far. It’s disappointing that when I had the ct cervical spine last year, nothing was said abou Eagles then.
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I had a retinal detachment about 2 years ago but they aren’t sure what caused it. I remember having a migraine that I passed out from and the next morning I had no sight in my right eye and still I have no sight in my right eye.
Hi, yes my retina started to detach too. Had emergency eye surgery as told would lose sight in 1-2 days. Seeing an eye specialist ( not just an optician) is wise if eye symptoms. Lots of members on here report eye symptoms but I do not think medics understand this link yet. D
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I’m really sorry that happened to you @Emily especially since you were passed out/asleep & unaware. My symptoms started gradually & accelerated. The floaters came first then I saw what seemed like a black curtain sliding over my eye when I blinked. After that “shooting stars” showed up out of the corner of my eye when I blinked. The “black curtain” scared me enough I went in on a Sunday evening to see an on call ophthalmologist. I never had a migraine & was actually out of town preparing to run a half marathon when the symptoms got dire. Needless to say, I came home & didn’t run.
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Yeah I understand that completely it’s hard now because of it and I have my ENT on the 16th but my neurologist is in March and I need someone faster than March. I have been having issues with it pushing on my jugular and facial nerves. I actually have my neck a bit swollen. I can’t sleep right because I feel lightheaded and so much ch pressure of a migraine in my skull. I have been trying to find a service dog trainer because my blindness and seizures and severe panic attacks.
Have you tried sleeping upright? Icing your neck may also help reduce the swelling which will get rid of pressure on nerves that are causing pain. Get a gel ice pack or two so you can alternate them. Put a thin towel or washcloth between your skin & the ice pack (even if it comes w/ a cover) & ice for ~15 min. w/ at least a 45 min break in between.
When you see the ENT, if she is familiar w/ ES, especially the vascular form, ask her for an Rx for a blood thinner such as Plavix. Taking a blood thinner for the time until surgery is scheduled has helped reduce symptoms significantly for a number of our members who had vascular ES. Getting your styloid(s) removed will potentially help reduce your symptoms sooner & better than anything your neurologist will do so hopefully this ENT will be able to help you soon.
Here’s a link to a recently posted research paper that you could print to take w/ you to your ENT appt.
https://pagepressjournals.org/index.php/vl/article/view/10955
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Hi Emily, really sorry to hear of your terrible problems. This condition is so difficult & made worse by medics not understanding/helping fast enough. Finding someone who knows about VES is important but difficult. On your eyesight have they told you they could try to operate or is it a permanent problem for you now? Wonder if seeing a Neuro-opthomologist could help (but they are rare medics to find). Hoping things improve for you soon. I did post recently what I did to try to cope while waiting for surgery, in case any of those things could help. Thinking of you. D
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I was told this is part of Eagle, and I have a similar reaction with swallowing. Had no idea it was related, it was nice to know there is a reason for it!
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Another thing I was told is connected with ES! I ask a ridiculous amount of questions every time I’m in front of a doctor lol. I get a sharp shooting pain when I turn my head rapidly. Then I see stars, which I was previously told was part of migrainous auras but since learned that it’s allllll part of ES. Everything from swallowing to turning my head, and sooo many more (including many I don’t yet know about) are connected to ES. What a fun time 
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Omg, I’m so excited your wait for surgery has finally ended!!! I will be thinking of you all day tomorrow and need to be updated on how you are feeling when you feel up to sharing.
So crazy to hear how many of our stories are parallel. And to think only 4% of the worlds population have this, and only 1.6% are symptomatic, yet the 1.6% of us all have nearly identical stories. Even down to the misdiagnoses, pushing past neglect and dismissal from doctors, and intense advocacy. Sending a massive, massive hug to everyone here, as this sh*t is no joke. Glad to know we are in it together 
Sending allll the positive energy your way for a smooth and successful surgery tomorrow, and would love to connect when you are on the other side!
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Hi friend, I’m so sorry to hear you are struggling. This diagnosis can suck the life out of you, so do everything you can to take care of yourself. My therapist recommended EMDR therapy to manage the medical trauma I’ve been through just to get here, and while it isn’t for everyone, I have personally found it to be really helpful.
I also have a service dog (my family dog who has become mine through this process), and went through NSAR to find a trainer and get certified. National Service Animal Registry. I also suffer from panic attacks and all the things, and having my dog with me is often a game changer.
For anyone else reading this with sound or light sensitivity, I also schlep around glasses with me ALWAYS (even at night, even in restaurants, wherever I need them) and I also purchased Loop earplugs. I can’t recommend them enough, and I immediately noticed a difference. I used to not be able to go to the grocery store/pharmacy without feeling completely overwhelmed, lightheaded and on the verge of passing out. Loop allows me to still hear my conversations perfectly well, but without the background noise.
As always, what works for me may not work for you, and vice versa. I noticed some similarities and thought I’d share some things that work for me for coping with ES. This is a marathon, not a sprint.
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So sorry that you’re going through all this Emily, I hope that you can get in to see someone sooner. Hugs for you
Yes I sleep upright but since I had cancer in my hip and lower spine it’s severe pain. I have the cold and heat gel pad it only relieves 5% of the pain to be honest. I called my doctor about plavix. Thank you so much
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How do I get in touch with NSAR because I only make a certain amount on month since I’m on disability and social security but the fee for training is really high.
Thank you. I hope so too.
https://www.nsarco.com/survey/
That link takes you to their website/service dog section. The website also contains a lot of info on the differences between Psychiatric Service Dog (PSD) and Emotional Support Animal (ESA), as well as how to register (you can register for as little as $54.00, which is what I did).
If you have any questions please let me know, I went through the process for myself and for my mom, too.
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Did you do your own online training? I need mine for blindness and seizures and panic attacks and anxiety. I heard it costs a lot to train.