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Sticky: Advice on Dealing with the Emotional Side of NAION
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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
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How common is second NAION attack?
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Hi everyone? By reading messages in this group, I have a feeling that second NAION is much more common than I expected. Is it a misperception? Or is it really quite common to have a second attack. I am very worried. thanks Cliff
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Sleep Apnea
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Hi everyone, Just wonder among us who suffer NAION, how many have sleep apnea? My NO says Sleep Apnea is a contributing factor to NAION. Do you have untreated sleep apnea when you got NAION? Thanks Cliff
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Questions re: Visit Summary of Instructions (Pages 1-9 & 10))
Hello Cliff, Yes, I was tested for sleep apnea after my first event and I had a light case of it. I don¡¯t know how accurate the test was actually but I catch myself forgetting to breathe when I am awake so I embraced any possible way I could prevent a 2nd eye event and I always use the CPAP machine and get great scores (.01 events per hour) consistently. So I conclude that sleep apnea did not cause my second eye event. Although having NAION in both eyes is very challenging indeed I find relief because I am not waiting for the other shoe to drop. Having an event in my 2nd eye is not the end of the world, I am no longer in fear of losing the second eye. I am just in fear that I will trip over my large dog or something else. I suspect my first event was from a combination of dehydration due to hot yoga with no proper humidity. Because two weeks before my first event my eyes became super watery and sensitive to any light. I knew at the time I had not been taking the time to drink enough water and my sinuses were acting weird in the hot yoga room. After hot yoga I was running around without a jacket in cold weather which may have caused a cold which caused the weeping eyes and extreme light sensitivity which preceded my first event by a couple of weeks. My doctor says we will never know and it is likely that multiple things triggered my first event. Best in Vision, Debra B On Sat, May 10, 2025 at 7:18 AM Bestray Pty Ltd via groups.io <bestray@...> wrote: Hi Debra, Sorry to hear you had a second attack in the other eye. Just want to know, do you have sleep apnea? If yes, do you use CPAP machine to treat the condition? Thanks Cliff On 11 May 2025, at 12:07 am, Debra B via groups.io <debrownstein@...> wrote: ? Re Hyperbaric Oxygen Therapy Hello Deane, Yes, in my case there was definite improvement in both eyes, the eye with the current optic swelling and the eye that was 21 months out. HVF tests show both had dramatic improvements. I will share data on these improvements in a few weeks as I am getting more testing done next week. I will share follow up data soon after. Best in vision, Debra B On Fri, May 9, 2025 at 3:10 PM Deane Williams via groups.io <pyroartist@...> wrote: Debra, Thanks for sharing. Very interesting! We all need more doctors that are not afraid to try a new approach. Did the hyperbaric oxygen treatment help both eyes? I'm sure we all would welcome a treatment that works with older NAION cases. Were the results noticeable to you and dramatic? Deane (moderator) On 5/9/2025 5:28 PM, eyenul via groups.io wrote: Thank you Debra. Really appreciate it. On Sat, 10 May 2025, 04:33 Debra B via groups.io, <debrownstein@...> wrote: Dear NIAON friends, Some Zoom participants on Saturday asked me to share with our email group what my Neuro-Ophthalmologist, Dr Y. Joyce Liao recommended to me when I was first diagnosed with NAION (vitamins, eye drops etc). I have attached in two pdfs (below) an after visit summary of her recommendations for me. When 21 months later I had my 2nd NAION event in the 2nd eye, she suggested I try Hyperbaric Oxygen treatments in addition to the protocol we had used previously. I did try the Hyperbaric treatments with positive results. She thought I was very receptive to that type of treatment since I showed great improvement quickly and she is more likely to recommend hyperbaric oxygen treatment to others as my HVF scores greatly improved. It is not covered by most insurances but it did go towards my yearly deductible In closing I just wanted to share what one Neuro-Ophthalmologist gave to me in my moments of need. Am not suggesting this would work as your path of healing but it is nice to compare strategies. All treatments should be monitored by your doctors. Watch a YouTube of Dr Liao with NAION patient. Best in vision, Debra B
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A NAION After Visit Summary of Instructions (Pages 1-9 & 10))
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Dear NIAON friends, Some Zoom participants on Saturday asked me to share with our email group what my Neuro-Ophthalmologist, Dr Y. Joyce Liao recommended to me when I was first diagnosed with NAION (vitamins, eye drops etc). I have attached in two pdfs (below) an after visit summary of her recommendations for me. When 21 months later I had my 2nd NAION event in the 2nd eye, she suggested I try Hyperbaric Oxygen treatments in addition to the protocol we had used previously. I did try the Hyperbaric treatments with positive results. She thought I was very receptive to that type of treatment since I showed great improvement quickly and she is more likely to recommend hyperbaric oxygen treatment to others as my HVF scores greatly improved. It is not covered by most insurances but it did go towards my yearly deductible In closing I just wanted to share what one Neuro-Ophthalmologist gave to me in my moments of need. Am not suggesting this would work as your path of healing but it is nice to compare strategies. All treatments should be monitored by your doctors. Watch a YouTube of Dr Liao with NAION patient. Best in vision, Debra B
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1 / DB: the print version of that YouTube video on NAION
KEY POINT IN ALL THIS .. after initial NAION attack .. patient IMMEDIATELY sought treatments .. IMHO, probably saved 50% of his vision in left eye --- On Saturday, May 10, 2025 at 12:05:31 AM EDT, Russ Poter via groups.io <russpoter@...> wrote: The patient in the YouTube video from Stanford Medical https://medicalgiving.stanford.edu/news/how-vision-loss-helped-me-see-the-world-in-a-new-light.html On Saturday, May 10, 2025 at 12:03:29 AM EDT, Russ Poter via groups.io <russpoter@...> wrote: DB .. this is the print version of that YouTube video .. https://medicalgiving.stanford.edu/why-giving-matters/gaining-insight-into-vision-loss.html On Friday, May 9, 2025 at 04:33:32 PM EDT, Debra B via groups.io <debrownstein@...> wrote: Dear NIAON friends, Some Zoom participants on Saturday asked me to share with our email group what my Neuro-Ophthalmologist, Dr Y. Joyce Liao recommended to me when I was first diagnosed with NAION (vitamins, eye drops etc). I have attached in two pdfs (below) an after visit summary of her recommendations for me. When 21 months later I had my 2nd NAION event in the 2nd eye, she suggested I try Hyperbaric Oxygen treatments in addition to the protocol we had used previously. I did try the Hyperbaric treatments with positive results. She thought I was very receptive to that type of treatment since I showed great improvement quickly and she is more likely to recommend hyperbaric oxygen treatment to others as my HVF scores greatly improved. It is not covered by most insurances but it did go towards my yearly deductible In closing I just wanted to share what one Neuro-Ophthalmologist gave to me in my moments of need. Am not suggesting this would work as your path of healing but it is nice to compare strategies. All treatments should be monitored by your doctors. Watch a YouTube of Dr Liao with NAION patient. Best in vision, Debra B
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1 / DB: the print version of that YouTube video on NAION
The patient in the YouTube video from Stanford Medical https://medicalgiving.stanford.edu/news/how-vision-loss-helped-me-see-the-world-in-a-new-light.html On Saturday, May 10, 2025 at 12:03:29 AM EDT, Russ Poter via groups.io <russpoter@...> wrote: DB .. this is the print version of that YouTube video .. https://medicalgiving.stanford.edu/why-giving-matters/gaining-insight-into-vision-loss.html On Friday, May 9, 2025 at 04:33:32 PM EDT, Debra B via groups.io <debrownstein@...> wrote: Dear NIAON friends, Some Zoom participants on Saturday asked me to share with our email group what my Neuro-Ophthalmologist, Dr Y. Joyce Liao recommended to me when I was first diagnosed with NAION (vitamins, eye drops etc). I have attached in two pdfs (below) an after visit summary of her recommendations for me. When 21 months later I had my 2nd NAION event in the 2nd eye, she suggested I try Hyperbaric Oxygen treatments in addition to the protocol we had used previously. I did try the Hyperbaric treatments with positive results. She thought I was very receptive to that type of treatment since I showed great improvement quickly and she is more likely to recommend hyperbaric oxygen treatment to others as my HVF scores greatly improved. It is not covered by most insurances but it did go towards my yearly deductible In closing I just wanted to share what one Neuro-Ophthalmologist gave to me in my moments of need. Am not suggesting this would work as your path of healing but it is nice to compare strategies. All treatments should be monitored by your doctors. Watch a YouTube of Dr Liao with NAION patient. Best in vision, Debra B
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DB: the print version of that YouTube video on NAION
DB .. this is the print version of that YouTube video .. https://medicalgiving.stanford.edu/why-giving-matters/gaining-insight-into-vision-loss.html On Friday, May 9, 2025 at 04:33:32 PM EDT, Debra B via groups.io <debrownstein@...> wrote: Dear NIAON friends, Some Zoom participants on Saturday asked me to share with our email group what my Neuro-Ophthalmologist, Dr Y. Joyce Liao recommended to me when I was first diagnosed with NAION (vitamins, eye drops etc). I have attached in two pdfs (below) an after visit summary of her recommendations for me. When 21 months later I had my 2nd NAION event in the 2nd eye, she suggested I try Hyperbaric Oxygen treatments in addition to the protocol we had used previously. I did try the Hyperbaric treatments with positive results. She thought I was very receptive to that type of treatment since I showed great improvement quickly and she is more likely to recommend hyperbaric oxygen treatment to others as my HVF scores greatly improved. It is not covered by most insurances but it did go towards my yearly deductible In closing I just wanted to share what one Neuro-Ophthalmologist gave to me in my moments of need. Am not suggesting this would work as your path of healing but it is nice to compare strategies. All treatments should be monitored by your doctors. Watch a YouTube of Dr Liao with NAION patient. Best in vision, Debra B
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NAION & OZEMPIC: THE HARVARD MEDICAL INVESTIGATION
Specialists discuss concerns over impact of semaglutide on the eye Specialists discuss concerns over impact of semaglutide on the eye A paper recently published in JAMA Ophthalmology by Hathaway and colleagues at Harvard suggested a potential association between prescribed semaglutide and an increased risk for nonarteritic anterior ischemic optic neuropathy.Semaglutide is a GLP-1 r Repeating .. exercise .. healthy living .. diet .. are good things Unhealthy living .. commonality in premature death and disease
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What smart medical doctors do NOT self-prescibe
https://www.goodrx.com/hcp-articles/providers/self-prescribing-laws-by-state They want to be HEALTHY
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Pros and Cons: Undoubtedly raises risk for NAION but the benefits are also very powerful; after talking to my Opthomologist I decided against taking Olympic, Wegovy etc. because of the admittedly small and not definitive risk to my good eye
https://www.onlymyhealth.com/breakthrough-trial-finds-weight-loss-drug-wegovy-also-treats-serious-liver-disease-12977830139 https://www.ajmc.com/view/semaglutide-use-could-prevent-up-to-2-million-mace-in-10-years-model-suggests https://onlinedoctor.asda.com/uk/health-benefits-of-semaglutide.html
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Saturday NAION Zoom, May 3 (Details and Link within email)
Hello NAION friends, Reminder about our Saturday Zoom peer support group meeting, hope to see you there! Join us for one hour Saturday May 3 as we meet our NAION friends around the world. Time? Saturday May 3, Zoom Room opens 15 min before your 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¡ìT) 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
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"Ozempic, Wegovy took my vision, say grandma of 11 and NJ man ¡ª as more users report ¡®devastating¡¯ side effect"
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https://nypost.com/2025/04/29/us-news/grandma-of-11-and-nj-man-join-growing-chorus-of-ozempic-wegovy-users-claiming-severe-vision-loss?utm_source=nypost&utm_campaign=android_nyp&utm_medium=social
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Next Saturday Zoom, May 3 (Details and Link)
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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¡ìT) 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
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Our new NAION Zoom Group starts Wednesday April 23,2025
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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.
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Possible Zoom meet Saturday or Sunday
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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@...
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NAION Peer Support Zoom LINK & Time
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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
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Correction to UK Zoom Time now 11pm
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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
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Eyesight-Restoring Device From Musk Company Earns FDA Breakthrough Designation
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"
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Science Friday bit
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
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