Naion

Posted by zettybin25 @zettybin25, Jul 12 12:54pm

I was recently diagnosed with NAION in my right eye. The bottom peripheral vision is affected. My left eye is already at 50% vision, not from NAION. I’m terrified of loosing more vision in my right eye. I’ve been told chances are good that I won’t loose anymore vision. Does anyone have experience with long term NAION?

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Debra, Volunteer Mentor | @karukgirl | 6 days ago

Hello there @zettybin25, and welcome to Mayo Clinic Connect. Sorry it took so long for me to see your first post!
I'm sorry to read your post that you were diagnosed with NAION recently. I totally understand your fear of losing any more of your vision.
I have a little experience with NAION, as I was attacked by it too! It has been three years now, and my vision loss took time to settle down to where it is now. Maybe about six months.

I was told by a neuro-ophthalmologist at UC Davis, that my vision loss was permanent, and she also instilled fear in me that there is a 30-40% chance it will happen to my good eye in five years. Great!

There is no known cause. It affects men and women equally. It does seem to affect people of Scandinavian background more, and hypercholesterolemia is also on the radar. Obstructive sleep apnea is a higher risk for NAION. There is a tiny link to taking BP meds at night, and the thought is too low BP can cause the blood flow to stop at the optic nerve. They told me to not take BP meds at night. I was on a beta blocker for several years for Hypertrophic Cardiomyopathy and ironically, was just taken off the meds three weeks before this happened.
The Mayo Clinic could not find a correlation for this and the NAION...but I do wonder. The biggest risk it seems is a small and crowded optic disk or what is called a "disc at risk". Here is a definition for that:
A "disc at risk" refers to an optic nerve head that has an anatomical configuration, such as a smaller or crowded optic disc, which increases the likelihood of developing conditions like non-arteritic anterior ischemic optic neuropathy (NAION). This configuration can lead to reduced blood flow and potential vision loss due to ischemia in the optic nerve.
UC Davis Cleveland Clinic

When I asked the specialist at the COE (Center of Excellence) I went to, if this could be linked to the Covid Vax, she told me they were not sure as they were not allowed to study it. My NAION has some strange features not found in typical NAION. Like it is painful. It's supposed to be not painful at all.

So, while there is no cure, there is no known cause, there is nothing you can do to prevent it, and nothing you can do to prevent it happening to your other eye...I have learned to live with my vision loss. Mine is the bottom and up and around like the shape of a backwards "C" in my left eye.
It was like my glasses were smeared with butter. I could see colors and shapes on the outside, but the inside was clear. My central vision was not affected.
That is a good thing.
Mine seems to have good days and worse days. And almost every single day I get an "Eye-ache". Like a headache in my eye. One Advil takes it away, but for three years I am taking Advil every day.
Since it has been three years now it has become part of my life. I don't like it, but I have adjusted to it.
I was told by the experts at UC Davis to see my eye doctor every six months. I have been bad about that after the critical period ended.
Here is a link from UC Davis where I was seen by Dr Yin Allison Liu. She is fantastic!
https://health.ucdavis.edu/news/headlines/new-risk-factor-identified-for-potentially-blinding-condition/2023/06
@zettybin25 have you had a chance to read about NAION on Connect? If you type NAION in the search area at the top of the screen you will find many discussions about this unfriendly condition.
When do you see your eye doctor next?

zettybin25 | @zettybin25 | 5 days ago

Thank you for responding. I have read the entire internet on NAION. My doctor is a nuero opthamologist and has conducted clinical trials on it in the past. She’s great. I just don’t know anyone who has had it. I play sports, golf and pickleball and it’s a challenge. Mine is affected like yours, center vision is fine but bottom is like a C also. I was tested for sleep apnea, don’t have it. Cholesterol is controlled with medication, could be the disc at risk, they just don’t know. I hope my brain will adjust to it soon, it’s just so annoying and scary. My other eye already has another issue that caused a loss of vision 7 years ago but it’s not the same as NAION. Guess I’m just unlucky. Thanks again for responding. Good luck to you going forward.