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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@...

can anyone recommend a large print keyboard?

HULLO ALL FEAR OF NAION AFFECTING OUR HEALTHY EYE LIVES WITH ALL OF US WE LOOK AT THE STATS FOR REASSURANCE IT WOULD BE SO HELPFUL, I’M SURE TO ALL TO HAVE A QUICK SURVEY IN OUR GROUP PKEASE DO ANSWER SO THAT WE CAN APPRECIATE THE REAL PICTURE I’LL START SEX MALE FIRST INCIDENT AGE 62 CURRENT AGE 66 SECOND INCIDENT AGE N/A COMPROMISED DISC CUP RATIO AFFECTED EYE YES UNAFFECTED EYE YES USING OZEMPIC OR SIMILAR NO HYPERTENSION YES POSSIBLE NOCTURNAL HYPOTENSION DIABETES NO SLEEP APNOEA NO CAUSAL RELATIONSHIP TO COVID ILLNESS MAYBE CAUSAL RELATIONSHIP TO COVID VACCINE MAYBE STILL DRIVING YES OTHER THIS WILL BE AN INVALUABLE SURVEY PLEASE DO ANSWER THANK YOU TERRY MEDICAL SPECIALIST

JUL 08, 2024 American Academy of Ophthalmology and North American Neuro-Ophthalmology Society Issue Advice on Weight Loss Drug and Eye Health SAN FRANCISCO — A new study suggests patients taking semaglutide — the active ingredient in Ozempic and Wegovy — may be at higher risk of developing an eye condition that can cause blindness. Non-arteritic anterior ischemic optic neuropathy or NAION, happens when blood flow to the optic nerve is blocked, causing sudden, painless loss of vision in one eye. Here’s what the American Academy of Ophthalmology and the North American Neuro-Ophthalmology Society want you to know about this study published July 3 in JAMA Ophthalmology: This is not the type of study that can show the treatment caused NAION. But the careful analysis conducted by the Harvard neuro-ophthalmology research team did identify a potential link between semaglutide treatment and NAION. This intriguing finding should inspire more research that will help clarify if semaglutide does cause NAION. Semaglutide was rigorously studied in several randomized, controlled trials worldwide. The U.S. FDA approved semaglutide for medical use in 2017. Many millions of people take this medicine throughout the world. This is the first study to report an association between semaglutide and NAION. The subjects in this study were either overweight or obese or had type 2 diabetes. People who have diabetes are already at risk of NAION. Other risk factors for NAION include heart disease, history of heart attack, high blood pressure, and sleep apnea. All the patients included in the study were seen at the same large eye hospital, which treats most of the region’s NAION patients, making it hard to determine if this association is true of all people taking semaglutide. A postmarketing surveillance study – a type of study that monitors the safety and effectiveness of a product after it has been released to patients – could be helpful in determining if there is a connection between semaglutide and NAION.Implications for Patients At this time, we do not recommend that people stop taking semaglutide. If you take semaglutide and have a sudden loss of vision, stop taking the drug and see a doctor immediately. Is it safe for people who previously had NAION? The study offers no information about people who previously had NAION who then developed it again following a prescription for semaglutide. Should people also be concerned about other diabetes drugs, such as tirzepatide (Zepbound or Mounjaro)? Semaglutide is the only drug investigated in this study. Patients should talk with their primary care physician to determine if semaglutide is right for them. NAION Symptoms The people in the study developed NAION symptoms following their first prescription of semaglutide. NAION symptoms include: Blurred vision Color distortion Loss of peripheral vision A dark or gray spot in the vision that doesn't move Loss of contrast or light sensitivity NAION usually happens without any warning. Vision loss can range from mild to severe. Most people don’t feel pain, but it can occur in up to 10 percent of patients. If there is pain, it may be an indication of another cause of vision loss. There is no cure for NAION.Other Vision Changes Linked to Semaglutide While the link to NAION is new, the medical community has been aware of other vision changes with semaglutide for some time. Previous studies have shown that semaglutide can cause blurred vision, worsening of diabetic retinopathy and macular complications. However, this appears to be a temporary side effect that goes away after three or four months. How can semaglutide cause temporary vision changes? When the body experiences a change in sugar level, it can affect the shape of the eye’s lens. This change is what causes blurry vision. Could a similar phenomenon be at play in this study? Could the ability of semaglutide to rapidly reduce glucose levels and blood pressure cause NAION and not the drug itself? It’s unknown. Only further research can answer that question. About the American Academy of Ophthalmology The Amer

Helpful recommendation .. get any device that monitors BP. If, for whatever reason, BP rises .. IMMEDIATELY REPORT TO ED/ER .. For myself, I dug deep, and got a Apple Watch with cellular. Also has "crash protection" -- in case of call, it calls 9-1-1 with GPS location. On Sunday, March 16, 2025 at 11:29:23 PM EDT, George Ousler via groups.io <sailfishin@...> wrote: Hi Marc, Thanks for your post. I feel obligated to let you know that I was in your shoes not too long ago (March 2024) and unfortunately suffered from a second NAION in my neighboring eye after using a GLP (Mounjorno) for approximately 6 months. I completely understand the risk vs. benefit ratio and that the improvements from weight loss, etc. are tremendous but I have to say that the potential loss of vision in both eyes is devastating. Once you have a NAION in both eyes, there may be significant blind spots based on the areas between your two eyes that overlap and therefore have true total vision loss (when there is only one eye involved, the neighboring eye compensates to the point where you don't notice the vision loss). I'm not suggesting that you change your opinion / plan, rather, just be sure that you can't control your diabetes, etc. through diet, other medications, etc. to try to prevent an ischemic event from GLP induced decreased blood flow. Also, do you have crowded disc syndrome (small cup to disc ratio in both eyes)? As you know, once it occurs, you can't reverse it. I've been seeing a neuro-ophthalmologist at Mass Eye and Eye who has been researching and publishing on the association between NAION and GLPs. Please google Dr. Rizzo at Mass General Hospitals and NAION to learn more. Happy to discuss more Marc (and anyone else in this group) to share my experience - once you have a second NAION, the game changes significantly. Thanks. George On Sunday, March 16, 2025 at 10:57:23 PM EDT, Marc Gold via groups.io <marcgold@...> wrote: The evidence of a link between Semaglutide and NAION is indeed very weak. I already have NAION in one eye. The improvement of my diabetes, weight, heart and kidney status worries me far more than the small chance my other eye could be affected by Ozempic. I start Ozempic next week @ 1 mg. per week. My physician concurs that the benefits far outweigh the risks. I'll take my chances, which are not high at all: https://journalretinavitreous.biomedcentral.com/articles/10.1186/s40942-024-00620-x#:~:text=In%20the%20present%20study%2C%20we,visual%20loss%20in%20the%20affected Even though we have demonstrated a higher risk of NAION in persons with T2D exposed to once-weekly semaglutide, it is important to keep in mind that use of semaglutide comes with substantial advantages for patients as given by the improved glycemic control, reduction in risk of cardiovascular disease as well as the beneficial effects of weight loss [1]. As such, the observed incidence rate of NAION of 0·228 per 1000 person-years for persons with T2D exposed with once-weekly semaglutide may not discourage semaglutide treatment but needs to be acknowledged as a potential risk. This is truly a miracle drug in the same way that penicillin, statin drugs, Covid vaccines, insulin and Sildenafil have demonstrated. We are lucky to live in this age of pharmaceutical advances and wonders. I will report my progress which should allay some of your concerns about Semaglutide and NAION. Marc

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