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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

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 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@... 开云体育 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@...] _._,_._,_

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@...

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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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1) Anyone have suggestions for the best phones for the visually impaired? 2) Anyone have suggestions for the best internet browsers? 3) Anyone have experiences with: Pentoxifylline (Trental) Citicoline Niacinmide B-3 (high doses)urrently experiencing NAION in 2nd eye and appreciate your experience and suggestions. Thank you. Debra B Debrownstein@gmail,com

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Reminder: ALL pharms should be treated with caution .. https://nypost.com/2025/03/08/health/people-going-blind-after-using-weight-loss-drugs-like-ozempic-and-mounjaro?utm_source=nypost&utm_campaign=android_nyp&utm_medium=social

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