Naion

Hello @mattamybenson, and welcome to Mayo Clinic Connect.
I'm sorry to hear that your husband was just diagnosed last week with this rotten condition!
I see you asked @zettybin25 about her central vision, and I thought I would pop in here and share with you too.

I was diagnosed with NAION two years ago. It affected my left eye. I had been getting "Ocular" or "Retinal" migraines for years. The painless, flashing disco lightening show inside your head.
They were supposedly harmless, with no know real cause.

So when my left eye put on a light show, I figured it was these "migraines", and did not worry. Until two days later it was still happening. I knew something was wrong.
It took over a week to be seen by my optometrist, and he immediately sent me to an eye doctor.
He had no clue.
I saw another eye doctor. Tests/scans with no clue, so I was sent to UC Davis.
It was there I was diagnosed with NAION. It has been holding steady after the six month waiting period. It is permanent now.
My vision is like I have liquid soap on my glasses in a backwards "C". The central vision is not affected, thank God ! But all around is fuzzy and dark and wavy and weird...

I tripped over things for several months, because I couldn't see the floor on my left side.
I feel like I have good days and bad days with this.

I also have a symptom that the experts at UC Davis cannot explain.
My eye hurts everyday.
Every day I take an Advil.
There have been a couple of days and a couple of weeks the past two years when it did not hurt...but mostly it aches. Like a headache in my eye.

I was pretty depressed at first.
It took months to adjust.
But I have and I am grateful each day that my good right eye is healthy and doing a lot of the work!
One thing that I have not done yet, is get back on my motorcycle. I have a big Harley Davidson named "Betty", and since this happened, I have been hesitant to get back in the saddle.
When you ride, you need to be 100%...and my left eye is not. I planned to ride again this summer...but look! It's October and I still have not.
I really miss riding. But I don't want to die trying!
When does your husband go back to his eye doctor?
How is he adjusting to this?

78 year white male with no particular risk issues for this rare condition. My search says that 70% are idiopathic in nature, meaning they don't know cause. My Neuro Ophthalmologist says 70% stay the same, 20% get better, and 10% get worse. Also, 15% to 20% chance that it moves to the other eye within 5 years. Mine is in the left eye and impacts upper vision. Can't see faces if I block my good eye, but peripheral vision is kind of okay in the left eye. The blind part is not solid, more like looking through cheesecloth; I can see colors. Mine arrived without pain over a weekend. I always thought my left eye was different in feel. Initial discussion with the MD was that the use of steroids was split, I chose not to use it. Beyond that, there is no treatment, just told to watch risk factors, such as hypertension, diabetes, sleep apnea, all of the normal ophthalmologists' warnings about things that cause eye issues. It seems that managing the psychological portion of the condition is important. I am new, so I am still depressed and anxious. What is known about dos and don'ts is a real fear.

I was recently diagnosed with NAION in my right eye. It is blurring the lower inside area of the eye (like vasoline was smeared over the lower half of my eye).
I've seen 2 neurologists, a hematologist, had an MRI with contrast and a CT scan with contrast. I've had over 20 labs run and everything comes back normal. I took the GLP-1 Wegovy for 11 months and stopped immediately after discovering the vision loss. I took a flight just prior to the onset but have flown other times prior to this while on the medication without incident.
They now want to send me for a sleep study as well as a Echo cardiogram. Please note that I've never had high blood pressure, diabetes or sleep apnea. I truly think it's from the medication but no one wants to report it.
My total cholesterol is 208 (barely above the normal range) and the only treatment they've said is a baby aspirin and wanting to start me on a "baby dose" of statin. I'm not understanding why they are pushing statins so much.
I'm looking into Hyper Baric Therapy and I'm not sure if it will help but at this point, it cant hurt.

Any ideas would be greatly appreciated.

@javagal45
I'm 64 yrs old.

@javagal45 sorry to hear this happened to you. I'm glad you still have partial vision. With time my brain has pretty much adapted to the weirdness of partial vision. I hope that is encouraging. I was not on a glp1. I was a healthy 68 year old at onset with slightly high sugar (prediabetic levels without medication) and slightly high cholesterol. I'm now on the lowest dose of statin and diabetic medicine. The optic neurologist said prediabetic levels can contribute to naion if you have a disk at risk. Im a hiker. The naion felt like it came out of the blue. Your story is of interest to me because my episode was the morning after a 5 1/2 hour flight. How soon after your flight did you start to lose vision? I have flown once since the eye stroke with no incident but I am reluctant and I'm not sure it's worth the risk. I learned in this chat that some people with naion wear an oxygen concentrator on flights. The last time I saw a specialist he sounded like the risk of flying is up to me, but if I do fly to take a whole aspirin instead of a low dose.

@javagal45 Sorry to hear about your NAION. The best type of doctor that everyone should see for suspected NAION is an Neuroopthamologist. Most people have never heard of this or NAION. Try to find one in your area. They are often found near large, teaching hospitals. Please feel free to join our forum at naion.groups.io