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So very sorry to have read about your NAION. Four words describe me in this remaining life now. Anxiety, apprehension, uncertainty and insecurity. It’s going to be an everyday fight within you, because vision loss is something which you will always be aware of every waking moment of the day. The thought, why it happened to me will always crop in your mind. But believe me, there is no answer and there is nobody out there to protect you. You only have to get up every day, dust yourself and your thoughts and move on. Maybe your spouse will be the only person, who will be sympathetic towards you. You will always think that despite being a firm believer in God, despite not doing bad to anyone else, despite being a healthy person, despite being honest and nice person, why did it happen to me. Again, you will never find answer to these questions either within yourself or from someone else. But, despite all the bad (NAION), happened to you, you are the only one, who has to rise. Believe me, no meditation, no prayer, no visit to your place of worship will help. Just go out, meet people, laugh with them but never share your problem with them. No one is interested in your agonies. No one really cares or sympathises. Just meet people, so that the intensity of sorrow in your heart goes down. This is the only group, which will realise what you are going through because we are the fellow sufferers. Take the medication prescribed by your doctor regularly. Flying in an aircraft is not a risk at all. Low vision gadgets only help to a small extent. Use eye glasses for the better eye and you can take them anytime. Don’t worry, nothing will happen to your better eye. Start driving, whenever you want. But remember, since your binocular vision and depth perception has suffered, you will relearn the distance judgement, if you drive slowly and regularly. Brights lights will bother you for a while. Use sunglasses outside. Dim your lights inside. Hope my post is able to answer questions you asked and also those you will ask yourself repeatedly but won’t get a satisfactory answer ever. Hope this helps Aloke

Re: Saturday Zoom, NAION peer support group on May 3. Hello NAION friends, Our first Zoom meeting was exciting, there were many wonderful participants and it was fun to talk with so many NAION people! Some people rreached out to me about an earlier time and a weekend day might be easier for them. So if you are interested and available please join us for one hour on this next Saturday. When? Saturday May 3, Zoom Room opens 15 min before start time. ? Pacific Daylight Time (PDT) 8:00 AM ? Central Time (CDT): 10:00 AM. ? Eastern Time (EDT): 11:00 AM. ? Dublin (IST) 4:00 PM ? London, UK (BST): 4:00 PM ? Paris, 5:00 PM (CEST) 5:00 PM ? Cape Town, South Africa (SAST) 5:00 PM ? Melbourne, Australia (AEST)1:00 AM May 4 ? Aukland, New Zealand (NZST) 3:00 AM May 4 ? Hawa’i, (H§T) 5AM Where? For Zoom Link, click on this web address: https://us02web.zoom.us/j/6271754286?pwd=Umh4QUtwcXAveFNXMkowQS9nVzBsdz09&omn=84987063592 Please note with your voluntarily participation you agree to release all other participants, volunteers and organizers of any and all liability. If the link isn't working use: Meeting ID: 627 175 4286 Passcode: 7388161 Let’s have fun, Debra B (volunteer) debrownstein@... NAION Bilateral since March 4, 2025

Hello NAION Friends, So glad there was a strong response indicating interest in supporting each other on Zoom. Our first NAION Zoom meeting will be held on Wednesday, April 23, 2025 @ 3:00 PM in California (PDT) corresponding times are ? Mountain Time (MDT): 4 PM ? Central Time (CDT): 5 PM ? Eastern Time (EDT): 6 PM ? London, UK (BST): 11 PM ? Melbourne, Australia (AEST): 8 AM on April 24. The Zoom link and other details will follow. All participants with great ideas, experience with groups, and those with suggestions are welcome to email them. Family members are welcome if over 18 years of age. This is a free peer support group and with your voluntarily participation you agree to release all other participants, volunteers and organizers of any and all liability.

There is an option to attend a new Zoom meetup for those unable to attend the last one (yesterday). I just want everyone to have an opportunity to talk with other NAION people. We are not alone. I can set it up another Zoom for anytime you might want Saturday or Sunday. I just want help verifying time zones. I live in California but can get up in the middle of the night with no problem. Please let me know if you have any interest directly at my email below. Include your time zone and time preferences. Thank you, Debra B debrownstein@...

Hello NAION friends, You are invited to attend our free NAION peer support group. Please note with your voluntarily participation you agree to release all other participants, volunteers and organizers of any and all liability. When? TODAY 4/23/05 Zoom Room opens 15 min before start time. ? Pacific Daylight Time (PDT) 3:00 PM ? Mountain Standard Time (MST) 3:00 PM is only correct for areas not observing daylight saving (e.g., Arizona); most of the Mountain region will be on MDT ? Mountain Daylight Time (MDT) 4:00 PM. ? Central Time (CDT): 5:00 PM. ? Eastern Time (EDT): 6:00 PM. ? London, UK (BST): 3:00 AM on April 24. ? Melbourne, Australia (AEST): EST) should be 12:00 PM (noon) on April 24. Where? Zoom Link click here or click on this web address: https://us02web.zoom.us/j/6271754286?pwd=Umh4QUtwcXAveFNXMkowQS9nVzBsdz09&omn=84987063592 If the link isn't working use: Meeting ID: 627 175 4286 Passcode: 7388161 We are building a NAION community together. Thank you, Debra B Volunteer debrownstein@... NAION Bilateral since March 4, 2025

Thank you for this correction. I relied on AI to tell me the times and it was mistaken! .Hopefully if there are any other corrections people will find their correct corresponding time! Thank you Ronnie! - On Wed, Apr 23, 2025 at 11:56 AM ronnie landau via groups.io <ronnielandau@...> wrote: You've got UK time as 3am tomorrow. But we're only 5 hours ahead of EDT! So, it should be 11pm this evening for the UK. Please confirm asap. Thanks On Wednesday, 23 April 2025 at 19:51:29 BST, Debra B via groups.io <debrownstein@...> wrote: Hello NAION friends, You are invited to attend our free NAION peer support group. Please note w ith your voluntarily participation you agree to release all other participants, volunteers and organizers of any and all liability. When? TODAY 4/23/05 Zoom Room opens 15 min before start time. ? Pacific Daylight Time (PDT) 3:00 PM ? Mountain Standard Time (MST) 3:00 PM is only correct for areas not observing daylight saving (e.g., Arizona); most of the Mountain region will be on MDT ? Mountain Daylight Time (MDT) 4:00 PM. ? Central Time (CDT): 5:00 PM. ? Eastern Time (EDT): 6:00 PM. ? London, UK (BST): 11:00 PM on April 24. ? Melbourne, Australia (AEST): EST) should be 12:00 PM (noon) on April 24. Where? Zoom Link click here or click on this web address: https://us02web.zoom.us/j/6271754286?pwd=Umh4QUtwcXAveFNXMkowQS9nVzBsdz09&omn=84987063592 If the link isn't working use: Meeting ID: 627 175 4286 Passcode: 7388161 We are building a NAION community together. Thank you, Debra B Volunteer debrownstein@... NAION Bilateral since March 4, 2025

Eyesight-Restoring Device From Musk Company Earns FDA Breakthrough Designation Eyesight-Restoring Device From Musk Company Earns FDA Breakthrough Designation Elon Musk’s brain implant startup’s Blindsight device could restore sight to the blind "Elon Musk’s brain implant startup’s Blindsight device could restore sight to the blind"

Science Friday is interviewing someone who is blind and discussing how to design accomodations for the blind (April 18). It should be available on the podcast later this week. Anne

Hello NAION friends, Here is a suggested outline for our first NAION Peer Support Group Meeting ON Wednesday, April 23 (in most time zones). I nformed Consent: This is a free peer support group and with your voluntarily participation you agree to release all other participants, volunteers and organizers of any and all liability. We can change the format as we go and grow to accommodate the number of participants and what seems to work best. I am new at this Peer Group Support stuff but when I started going bilateral on March 4, a few weeks ago, I knew I needed support a the best way to get is to give it! Thank you all for giving me this opportunity and this sense of community. Zoom opens 15 min before Group start time to give people the opportunity to settle in and hit the ground running, help anyone become familiar with mute and other features such as Speaker View and Gallery View, Chat room which is a great option for questions and resource recommendations. All participants with great ideas, experience with groups, and those with suggestions are welcome to email them. Family members are welcome if over 18 years of age. I went bilateral went bilateral in March so still adjusting and welcome any help and input my email address is: debrownstein@... Welcome Introduction ? Technical Check: Ensure everyone is comfortable with the Zoom platform and can hear and see each other clearly. Use mute when not speaking to minimize distractions. ? Ground Rules: Participants agree to confidentiality, respect, and active listening as core principles for the group. Discussion and Sharing ? Icebreaker Question: Ask some kind o a question like “What is your experience with NAION or what do you want from this NAION Zoom group?” To facilitate sharing and connection. People may wish to share if they have NAION in one eye or both, their NAION time line. Perhaps ihey are not ready to share ant group level and that’s 100% understandable and supported. Allow time for participants to share their experiences and thoughts, ensuring no one dominates the conversation. Perhaps we use a volunteer timer who can alert the speaker at 3 minutes. Next Steps and Closing ? Next Meeting: April 30th same time same link. Discuss frequency and timing of future meetings. Possible to add a Saturday meeting. ? Action Items: Provide any necessary resources or next steps for participants. Anything from the chat room can be addressed. ? Closing Remarks: Thank participants for their engagement and encourage feedback for future improvements. __________________________________________________________________________________________________________ NEW TIMES ???? Please double check you start time. Our first NAION Zoom meeting will be held on Wednesday, April 23, 2025 in many time zones but in other time zones it might be on Thursday the 24th., Please, please check corresponding times below because they were changed and corrections confirmed by the World Clock Time Zone ? Pacific Daylight Time (PDT) 3:00 PM ? Mountain Standard Time (MST) 3:00 PM is only correct for areas not observing daylight saving (e.g., Arizona); most of the Mountain region will be on MDT, which is 4:00 PM. ? Mountain Daylight Time (MDT) 4:00 PM. ? Central Time (CDT): 5:00 PM. ? Eastern Time (EDT): 6:00 PM. ? London, UK (BST): 3:00 AM on April 24. ? Melbourne, Australia (AEST): EST) should be 12:00 PM (noon) on April 24. ZOOM LINK The Zoom link to use is: https://us02web.zoom.us/j/6271754286?pwd=Umh4QUtwcXAveFNXMkowQS9nVzBsdz09&omn=84987063592 If the link isn't working use: Meeting ID: 627 175 4286 Passcode: 7388161 ZOOM TIPS and your informed consent required for support group participation. Use mute when not speaking to minimize distractions. Speaker View focuses on the active speaker. Gallery View shows all participants in a grid. Use Chat Room as option for questions, comments and resource recommendations. Lets try to keep sharing to 2 or 3 minutes to not dominate the conversation. Do not give Medical advise or tell people what to do. you can talk about your opinions, ideas and experiences. Be respe

Hello NAION friends, Here is a suggested outline for our first NAION Peer Support Group Meeting ON Wednesday, April 23 (in most time zones). I nformed Consent: This is a free peer support group and with your voluntarily participation you agree to release all other participants, volunteers and organizers of any and all liability. We can change the format as we go and grow to accommodate the number of participants and what seems to work best. I am new at this Peer Group Support stuff but when I started going bilateral on March 4, a few weeks ago, I knew I needed support a the best way to get is to give it! Thank you all for giving me this opportunity and this sense of community. Zoom opens 15 min before Group start time to give people the opportunity to settle in and hit the ground running, help anyone become familiar with mute and other features such as Speaker View and Gallery View, Chat room which is a great option for questions and resource recommendations. All participants with great ideas, experience with groups, and those with suggestions are welcome to email them. Family members are welcome if over 18 years of age. I went bilateral went bilateral in March so still adjusting and welcome any help and input my email address is: debrownstein@... Welcome Introduction ? Technical Check: Ensure everyone is comfortable with the Zoom platform and can hear and see each other clearly. Use mute when not speaking to minimize distractions. ? Ground Rules: Participants agree to confidentiality, respect, and active listening as core principles for the group. Discussion and Sharing ? Icebreaker Question: Ask some kind o a question like “What is your experience with NAION or what do you want from this NAION Zoom group?” To facilitate sharing and connection. People may wish to share if they have NAION in one eye or both, their NAION time line. Perhaps ihey are not ready to share ant group level and that’s 100% understandable and supported. Allow time for participants to share their experiences and thoughts, ensuring no one dominates the conversation. Perhaps we use a volunteer timer who can alert the speaker at 3 minutes. Next Steps and Closing ? Next Meeting: April 30th same time same link. Discuss frequency and timing of future meetings. Possible to add a Saturday meeting. ? Action Items: Provide any necessary resources or next steps for participants. Anything from the chat room can be addressed. ? Closing Remarks: Thank participants for their engagement and encourage feedback for future improvements. __________________________________________________________________________________________________________ NEW TIMES ???? Please double check you start time. Our first NAION Zoom meeting will be held on Wednesday, April 23, 2025 in many time zones but in other time zones it might be on Thursday the 24th., Please, please check corresponding times below because they were changed and corrections confirmed by the World Clock Time Zone ? Pacific Daylight Time (PDT) 3:00 PM ? Mountain Standard Time (MST) 3:00 PM is only correct for areas not observing daylight saving (e.g., Arizona); most of the Mountain region will be on MDT, which is 4:00 PM. ? Mountain Daylight Time (MDT) 4:00 PM. ? Central Time (CDT): 5:00 PM. ? Eastern Time (EDT): 6:00 PM. ? London, UK (BST): 3:00 AM on April 24. ? Melbourne, Australia (AEST): EST) should be 12:00 PM (noon) on April 24. ZOOM LINK The Zoom link to use is: https://us02web.zoom.us/j/6271754286?pwd=Umh4QUtwcXAveFNXMkowQS9nVzBsdz09&omn=84987063592 If the link isn't working use: Meeting ID: 627 175 4286 Passcode: 7388161 ZOOM TIPS and your informed consent required for support group participation. Use mute when not speaking to minimize distractions. Speaker View focuses on the active speaker. Gallery View shows all participants in a grid. Use Chat Room as option for questions, comments and resource recommendations. Lets try to keep sharing to 2 or 3 minutes to not dominate the conversation. Do not give Medical advise or tell people what to do. you can talk about your opinions, ideas and experiences. Be respe

Hello! I am new to the group and so happy to have found this. I checked on Facebook first and did not find any support groups. I live in Utah and was diagnosed with NAION in November 2024. It’s honestly been a really rough transition. Our disabled adult daughter lives with us and I am her primary caretaker so that has its very own and separate challenges. I have really isolated myself as I have found that being in large groups is really unsettling for me. I feel so discombobulated. I have been driving and drove on the freeway yesterday and felt really good about it. In my online research, I came across a site called Acuvision acupuncture in New Jersey with an Dr. rosenfarb in New Jersey that claims to be able to restore some vision loss. Have any of you heard of this or tried it? I am supposed to have a phone call with them next week to discuss options. I’d love to know if any of you have found anything that has helped you like this company claims it can. Thank you in advance!

Hi, I have not tried those things. My understanding is there are zero known and proved preventive or any other kind of treatment, one can only hope. Marc On Thu, Jan 13, 2022 at 6:16 PM GaryGBrown via groups.io <bhmvol@...> wrote: To participate here. I was diagnosed with NAION one month ago. I was at a follow up exam for a series of vitectomies/ retina repair procedures when it was discovered in a vision test. The retina doc ushered me down a few floors to a neuro opthamologist who did a couple of scans and a vision field test and told me a little about NAION. Anyway I have briefly looked through the group posts and I appreciate the info I see posted. I am currently under no treatment except to have swapped my ACE inhibitor and beta blocker to the morning. With no treatments expected I have become interested in supplements and have read with interest the thread on citicoline. Has anyone tried alpha lipoic acid or vitamins B3 or 12? I guess it’s a waste of money and emotion but maybe the cost is worth some hope. Again, thanks for allowing me o participate. I hope I can find something valuable to contribute.

There are similarities between glaucoma and NAION. Areas of mutual interest Glaucoma is 30x bigger than NAION -- more research $$ NAION patients are NOT immune from glaucoma

There are a few ongoing and completed clinical trials exploring various treatments for NAION (non-arteritic anterior ischemic optic neuropathy). These trials investigate different approaches, including intravitreal injections of stem cells, anti-VEGF agents, and surgical interventions, with the goal of improving visual function and safety. [1, 2, 3] Ongoing and Completed Trials: [1, 2, 4] Intravitreal Injections: Some trials are focused on intravitreal injections of different substances, such as allogeneic bone marrow-derived mesenchymal stem cells (BM-MSCs), or anti-VEGF agents like ranibizumab or bevacizumab. These injections aim to target the optic nerve and retina, potentially improving vision or reducing the risk of further damage. [1, 2, 4] Surgical Interventions: While the Ischemic Optic Neuropathy Decompression Trial (IONDT) found no benefit from surgical intervention, some researchers are still exploring surgical options like optic nerve decompression, transvitreal optic neurotomy, and pars plana vitrectomy. [2, 4] Other Therapies: Some trials are investigating the use of oral steroids, and others are exploring the potential benefits of platelet-rich plasma (PRP) injections. [2, 5] Example Trials: [3] A Phase 2/3, Randomized, Double-Masked, Sham-Controlled Trial of QPI-1007 in Subjects With Acute Nonarteritic Anterior Ischemic Optic Neuropathy (NAION): This trial, conducted at Stanford Medicine, investigates the effect of QPI-1007 on visual function and safety in patients with NAION. [3] A Non-Randomized Phase II Clinical Trial for Acute Non-Arteritic Optic Neuropathy: This trial explored the use of allogeneic BM-MSCs through intravitreal injection in patients with NAION. [1] A Randomized Controlled Phase 2a Study of RPh201 in Previous Nonarteritic Anterior Ischemic Optic Neuropathy: This study investigated the safety and efficacy of RPh201 in patients with previous NAION. [6] Generative AI is experimental. [1] https://stemcellres.biomedcentral.com/articles/10.1186/s13287-023-03500-7 [2] https://pmc.ncbi.nlm.nih.gov/articles/PMC3721361/ [3] https://med.stanford.edu/mosslab/research/clinicaltrial.html?ctid=NCT02341560&conditionId&serviceLineId&condition&alpha=p [4] https://pmc.ncbi.nlm.nih.gov/articles/PMC8910678/ [5] https://www.frontiersin.org/journals/medicine/articles/10.3389/fmed.2024.1344107/full [6] https://pmc.ncbi.nlm.nih.gov/articles/PMC6705418/ [-] https://med.stanford.edu/mosslab/research/clinicaltrial.html?ctid=NCT02341560&conditionId&serviceLineId&condition&alpha=p [-] https://www.snec.com.sg/patient-care/specialties-and-services/clinical-subspecialties/neuro-ophthalmology-what-we-do

Hello NAION Friends, Do you have any interest in participating in a NAION zoom group type self help group that meets once a week (or once a month) to share our experiences, concerns and knowledge? I am on Pacific Coast Time but am flexible as to anytime and any day of the week. I feel like this condition is isolating and it would be wonderful to chat and support each other. Please reply to this email or send me a private email message so I can ascertain if there is any interest. Include your time zone and which day of the week might work for you. This would not be a professional therapy zoom but a friendly group self support type meeting. Thank you, Debra debrownstein@... Groups.io Links: You receive all messages sent to this group. View/Reply Online (#2072) | Reply to Group | Reply to Sender | Mute This Topic | New Topic Your Subscription | Contact Group Owner | Unsubscribe [debrownstein@...] _._,_._,_

My understanding of NAION is that it is caused by reduced blood flow to the optic nerve, typically brought on by drop in blood pressure and that "Most patients with NAION have an anatomical variation of the optic nerve, making its contents very tight and crowded. This anatomy probably contributes to the impaired circulation that causes NAION." Bad news we are probably always at risk since we can't change our anatomy. I didn't have high blood pressure (118/70) and believe my right eye NAION was brought on by changes in blood pressure due to (1) the acute pain in my right toe from pseudo-gout that was treated (2) initially with continual daily maximum recommended dosage of ibuprofen for a month, and when that wasn't working (3) receiving together both an anesthetic shot and a cortisone shot in my toe joint. The initial pain and everything I did could have increased my blood pressure. Initial NAION showed up as loss of vision in bottom half of right eye. Neuro-ophthalmologist told me there was nothing I could do about it. She failed to tell me that since my optic nerve was still swollen becoming dehydrated was to be avoided, especially since I am a walking golfer, and it was July in the south. After running out of water while playing 18 holes, my right eye vision changed significantly. I now have very little use of my right eye, mostly just a blur. My take-away is to drink lots of water, avoid anything that can affect blood pressure either way, especially meds, and to try to educate medical people, including ophthalmologists, about NAION. Everybody's story is different, but that's mine! Comments, please. As for Cocoons glasses for helping, I wear their lemon-colored lens for working on my laptop and for reading. Seems to create more contrast which is helping good near-sighted left eye. NAION eye is worthless for reading. Haven't found anything that helps with compromised depth perception. HAPPY NEW YEAR! Diane Keasler Life is the school, love is the lesson.

I am new to the group- my naion episode happened late January of this year. I was given high steroids for 4 days, not sure if it was any help. Developed a severe case of shingles three days later. I believe I had a very light episode of the shingles a couple of months prior to my naion episode. (they cannot tell me what cased this) One of my concerns right now is flying. We have a trip planned for late May to Ireland. When I saw a neuro-ophthalmologist, one of his residents expressed that I should take flying precautions in the first year. Implying that the first year is the most critical for getting naion in the other eye. But the neuro-ophthalmologist wasn't as concerned as the resident. My local ophthalmologist wasn't concerned about flying that much at all. With that being said, has anyone ever heard of flying in the first year of diagnosis to be a risk factor? Thank You, Becky Miller

Hello! I am interested to know if we are still able to fly? Just like any other information on NAION, conflicting and limited! I appreciate being able to be on this forum! There is strength in numbers! We need each other! Thanks, Donna

https://www.medscape.com/viewarticle/semaglutide-use-linked-risk-vision-loss-diabetes-2025a10007g9

Hello George, I would like to write a private email to you. Please send me your email address. Thank you, Marc Gold marcgold@...