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Hello, did anyone experience strange headaches and shooting pains in their head and or pressure on the eyes following the loss of vision?

My close friend was just diagnosed with NAION. At this time, his optic arteries are still inflamed, so his vision in both eyes is terrible. I'm going to send this video to him so he can listen to it. One thing: Debby mentioned needing lots of extra light, but my friend has become SUPER light sensitive to the point where even the computer screen is too bright. Has anyone reading this had that issue?

I was just diagnosed Friday. Thank you for your very encouraging video.

If you want to meet patients with Nonarteritic Anterior Ischemic Optic Neuropathy (NAAION or NAION) and exchange experiences and tips and follow the newly formed NAAION Foundation, there are almost 900 now at facebook.com/groups/naaion/

Your professional Occupational therapy background undoubtedly has helped you to think creatively to develop these assistive devices. Having experienced ION in my left eye 2 years ago, the fear of losing vision in my other eye stays in the back of my mind constantly. I am a retired dental hygienist, and am blessed this vision loss happened after my working years. I am enjoying my new hobby of stained glass art, since I have a love of colours and relish working with them. I you for posting this helpful video. It is very encouraging.

Amazing video Dr Kornfeld and Debby Thank you!!

Thank you for making the effort to share your story. My husband had an NAION event 30 years ago, but lived a completely normal life afterward. Well, he had to make a career change since he had been an army a test pilot, but he moved readily to another field. Last year he suffered another NAION event in the other eye, much worse than the first. Life changed drastically. Like you, he has adapted and found ways to return to many of his favorite activities. Because of COVID-19, we have not been able to spend time with our siblings since he became Low Vision. I was looking for a way to explain how he is coping with his vision loss. Your video gives a great example of the many ways he has adapted! He talks to them by phone, and sometimes Zoom teleconference, but I think that seeing your video will help them understand and give them some comfort as well. Your stories and adaptive technologies are very similar. Love that you sew and cook! My husband loves to smoke and grill meat, even making his own ham. He has been to the golf driving range and feels that with the help of a friend, he might enjoy 9 holes of golf again. He uses the CCTV to read and handwrite notes or fill out forms and checks/check registers. The white cane is becoming a part of his daily 5 mile walks, especially in winter and low light conditions. it is essential in crowded halls or sidewalks where people expect him to see well enough to get out of their way. The cane signals that they need to leave space for him and tells drivers that he can't see their waves and hand signals. He sits about 4 feet away from a 65 inch TV now, but enjoys it very much. He connects to the internet to watch UA-cam videos there. His ability to use the computer once forward with the use of ZoomText and Reader software. He switched from an Android Smartphone to an Apple iPhone and found that for him, the iPhone could display text well enough that he did not often need additional magnifiers to use it. The phone App, Seeing AI, is also useful to him. Yes, he has a headlamp, a reflective vest, very bright flashlight, all very useful on evening walks to retrieve the mail or to mail letters. I use plates and cups that contrast against the color of the food I am serving. We added contrasting border markings to decks, porches and stairs. Before this last vision loss he was a pastel artist specializing in portraits and Montana landscapes. He still has a desire to create art but that will be a challenge for the future, maybe this winter. He was also a musician playing in 7 bands or ensembles in our area. The loss of ability to read music has been the worst for him, even worse than losing the freedom of driving! He has been working for months now on the skill of "Playing by Ear", but even as that skill develops, it will severely limit who he can play along with. He is trying some "Visor/Headset devices soon to see if they might help him read music once more. We are hopeful. Even using Alexa through an Amazon Echo smart speaker has made his path easier. Every little skill or device that helps him in his day is actually a major improvement. Thank you again for sharing your positive outlook and way of life!

Thank you God bless you

I played this guy in GVTTC!

Bill My AN-AION attack occurred Dec 5th 2018. No cure, no prevention, very little research and its a one way trip to losing an losing an eye or both eyes. Mentally its devastating, there is a FACEBOOK support Group made up of around 400 worldwide members that have been affected. A number of research articles are there as well as the experiences of the NA-AION survivors. Just thought Id pass the info on.

This is the best video I have ever seen about Anterior Ischemic Optic Neuropathy. The video really gives an in depth look at how a patient dealt with this challenge and ultimately just how resilient this woman is! And what luck to have such an incredible husband who could be her doctor too!