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On Fri, Apr 4, 2025 at 4:54?PM George Ousler via <sailfishin= [email protected]> wrote:
I¡¯ve also flown post NAION with no issues. I travel internationally for work and spend up to 12 hours on a plane. My neuro ophthalmologists also said that it¡¯s ok to fly since the cabin is pressurized.?
On Friday, April 4, 2025, 4:38 PM, Eibhlin Fionn via <ourmissbrooks=[email protected]> wrote:
I have flown many times since my total loss right eye in 2007 both domestically and out of the country. I agree with the other poster, much more concerned with navigating the actual airport. Have faith!
On Friday, April 4, 2025 at 04:30:10 PM EDT, Danette Janickovic via <mommyflyz= [email protected]> wrote:
I fly a lot. No issues,? but of course check with your medical provider. My biggest issue is navigating the airport. > On Apr 4, 2025, at 1:45?PM, Donna As endorf via <dka2016.bc= [email protected]> wrote: >
> ?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
>
>
>
>
>
|
I¡¯ve also flown post NAION with no issues. I travel internationally for work and spend up to 12 hours on a plane. My neuro ophthalmologists also said that it¡¯s ok to fly since the cabin is pressurized.?
On Friday, April 4, 2025, 4:38 PM, Eibhlin Fionn via groups.io <ourmissbrooks@...> wrote:
I have flown many times since my total loss right eye in 2007 both domestically and out of the country. I agree with the other poster, much more concerned with navigating the actual airport. Have faith!
On Friday, April 4, 2025 at 04:30:10 PM EDT, Danette Janickovic via groups.io <mommyflyz@...> wrote:
I fly a lot. No issues,? but of course check with your medical provider. My biggest issue is navigating the airport.
> On Apr 4, 2025, at 1:45?PM, Donna As endorf via groups.io <dka2016.bc@...> wrote:
>
> ?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
>
>
>
>
>
|
I have flown many times since my total loss right eye in 2007 both domestically and out of the country. I agree with the other poster, much more concerned with navigating the actual airport. Have faith!
On Friday, April 4, 2025 at 04:30:10 PM EDT, Danette Janickovic via groups.io <mommyflyz@...> wrote:
I fly a lot. No issues,? but of course check with your medical provider. My biggest issue is navigating the airport.
> On Apr 4, 2025, at 1:45?PM, Donna As endorf via groups.io <dka2016.bc@...> wrote:
>
> ?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
>
>
>
>
>
|
I¡¯ve flown many times in the 3 plus years with NAION. ?A couple have been to the UK and Europe, the others have been cross country here in the US. ?You should check in with your doctor and confirm just in case. ?
|
I fly a lot. No issues, but of course check with your medical provider. My biggest issue is navigating the airport.
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On Apr 4, 2025, at 1:45?PM, Donna Asendorf via groups.io <dka2016.bc@...> wrote:
?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
|
My NO said fighting ok but stay hydrated.
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-------- Original message -------- From: "Donna Asendorf via groups.io" <dka2016.bc@...> Date: 4/4/25 12:02 PM (GMT-08:00) Subject: Re: [NAION] Flying
Great!!! Thank you!!! ? With or without NAION this girl wouldn¡¯t consider hiking Mt Everest any more! ? Built in excuse! Literally! ?? On Apr 4, 2025, at 1:57?PM, Bobbie James via groups.io <rrjames61@...> wrote:
? I've flown at least twice with no issues.? My NO said it's okay because they pressurize the cabin.? She advised that I don't hike Mt. Everest... ? On Fri, Apr 4, 2025, 2:45?PM Donna Asendorf via <dka2016.bc= [email protected]> wrote: 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
|
Great!!! Thank you!!! ? With or without NAION this girl wouldn¡¯t consider hiking Mt Everest any more! ? Built in excuse! Literally! ??
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On Apr 4, 2025, at 1:57?PM, Bobbie James via groups.io <rrjames61@...> wrote:
? I've flown at least twice with no issues.? My NO said it's okay because they pressurize the cabin.? She advised that I don't hike Mt. Everest... ? On Fri, Apr 4, 2025, 2:45?PM Donna Asendorf via <dka2016.bc= [email protected]> wrote: 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
|
I've flown at least twice with no issues.? My NO said it's okay because they pressurize the cabin.? She advised that I don't hike Mt. Everest... ?
On Fri, Apr 4, 2025, 2:45?PM Donna Asendorf via <dka2016.bc= [email protected]> wrote: 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
|
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
|
Friend, a retired cardiologist, just sent this¡.
https://www.medscape.com/viewarticle/semaglutide-use-linked-risk-vision-loss-diabetes-2025a10007g9
|
Re: A message to George Ousler from Marc Gold
Hi Marc,
My email is sailfishin@.... Thx.?
On Friday, March 21, 2025, 11:45 PM, Marc Gold via groups.io <marcgold@...> wrote: Hello George,
I would like to write a private email to you. Please send me your email address.?
Thank you,
Marc Gold
|
A message to George Ousler from Marc Gold
Hello George,
I would like to write a private email to you. Please send me your email address.?
Thank you,
Marc Gold
|
I would really like a physical large screen mechanical keyboard, any thoughts?
|
Hi George, ? - Re the ear ringing¡ªyes, I got the ear ringing after NAION. Weirdly, it was worse when I was in a moving car¡ªliterally would stop when the car was stopped at an intersection, then resume. ?Now I don¡¯t notice when driving because I have a different ringing constantly in one ear due to hearing loss, unrelated to NAION.
? - A drug that was trialed a few years ago was designed to inhibit retinal ganglion cell death following onset of NAION, in hopes that when the inflammation went down, the nerve would start to function again. Unfortunately this very good idea did not pan out. Hope the vitamins pan out.
? - Please take a look at this interesting article. It mentions work by David Sinclair on re-programing retinal cells. It says that a company has shown it works in monkeys (not published, so I can¡¯t tell you if the study is any good) and hints at human trials starting. ??I can say that reprograming cells sounds like it could be risky.
? Best,
Adam
?
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From: [email protected] <[email protected]> On Behalf Of George Ousler via groups.io
Sent: Monday, March 17, 2025 11:21 PM
To: [email protected]
Subject: Re: [NAION] SURVEY? Great idea to do the survey. There are so few of us that every data point counts. Thanks for organizing and please see my responses below.? FIRST INCIDENT AGE 41 (right eye) SECOND INCIDENT AGE? - 49 (left eye) COMPROMISED DISC CUP RATIO?¨C Yes (both eyes) AFFECTED EYE - first NAION was my right eye (age 41) UNAFFECTED EYE - second NAION was my left eye (age 49) USING OZEMPIC OR SIMILAR - yes. My first NAION in right eye was caused by low BP in the evening. I started a low dose of BP medication and was taking at night (which was incorrect). After 1 week of taking this medication, my NAION occurred. My second NAION in the left eye was caused by Monjourno. I had been using this medication for about 6 months and then the NAION occurred.? HYPERTENSION - YES (it is controlled with a low dose BP medication)? POSSIBLE NOCTURNAL HYPOTENSION - unknown; but I believe that this is occurring. When I had my first NAION, I had started a low dose BP medication which I was taking at night. This was wrong (should have been taking in the morning) and it led to a significantly reduced BP while sleeping (as you know there is a nocturnal or natural diurnal lowering of BP). The medication made it go lower than it should have resulting in NAION.? DIABETES - YES (it is now controlled with insulin and diet); I had started Monjourno 6 months ago but stopped immediately once the NAION occurred.? SLEEP APNOEA - YES; it's not a serious case however, I've been using a CPAP machine to help prevent and further NAIONs as it is considered a risk factor.? CAUSAL RELATIONSHIP TO COVID ILLNESS MAYBE - NO CAUSAL RELATIONSHIP TO COVID VACCINE MAYBE - NO STILL DRIVING YES - YES; I have lost about 35 - 50% vision in both eyes. The loss has been in the inferior nasal / temporal regions. Oddly enough, driving a car is my happy place since my inferior vision is OK to be blurred and what I see through the windshield is generally clear. It's not completely clear and I need to be very careful. The visual challenge is more how I walk up stairs, curbs, see screens, etc. and unfortunately I can only see about half of my wife's and 4 children's faces / bodies when they are close to me. I also get head aches / tired from visual stimulation.? OTHER?¨C ?I have a couple questions / comments for the group -? 1. Has anyone ever had a second NAION in the same eye? Now that I have had a NAION in both eyes, I am hoping that I will never have another one. My neuron-ophthalmologist claims that there is about a 1% chance of it happening again in the same eye since the original NAION leads to necrotic tissue that widens the small cup to disc ratio (minimizing the crowded disc syndrome / risk). This makes sense to me but I am curious to hear if anyone has had a second NAION in the same eye. 2. Has anyone ever had an issue with flying or scuba diving? I do both alot for work and pleasure. And i haven't stopped after my second NAION. But am worried that these activities my provoke the situation. 3. Has anyone ever experienced ringing in your ear post NAION? About two weeks after my second NAION earlier this week, I started to experience ringing in my ear that is on the same side as my NAION. It has been persistent for about 4 months (even with treatment for sinus infection, etc. I am still waiting for a consult with an hearing specialist so we will see what they say. Any insight from the group if applicable would be greatly appreciated. 4. Lastly, I wanted to share with everyone a couple of potentially hopeful supplemental treatments. I work in Ophthalmic research / product development (ironically) and have several colleagues who suggested the following after my second NAION. 1) take the supplement Nicotinamide (nicotinic amide niacin) 500 mg. It's important to use the brand biophix. For the first 90 days post NAION you can use high doses (3000 mg per day) and then after this period you can drop to 1000 mg per day for maintenance. The purpose of this supplement is that it keeps your ganglion cells on the retina activated / engaged after the optic nerve is compromised. These ganglion cells are responsible for collecting the visual images and then signal to the optic nerve. Since the optic nerve is compromised the ganglion cells are 'freaking out' and dont know what to do with the visual signal. During the healing phase post NAION, it is important to keeps these ganglion cells active since some will die and some will survive over the 6 months post NAION. This supplement helps to improve the survival rate of the ganglion cells. This is what may help to gain vision back. I'm happy to share the publication of my colleague if anyone is interested. There is also another theory about a possible treatment post NAION that may help reduce the swelling of the optic nerve. It is the use of an IOP (intra ocular pressure) lowering agent for glaucoma. Although this medicine is used for glaucoma patients, it may be helpful to reduce the acute swelling / inflammation as a result of the NAION. The idea is that if you reduce the swelling / inflammation, there may be less or shorter optic inflammation resulting is less vision loss. This is definitely an off label use of a glaucoma medication but in our situation, may be worth trying acutely. The medicine is called alphagan (brimonidine). This is something that would be used for about 3 months post NAION and no longer after this time period? This forum had been great - I am curious to hear if the members would be interested in a group Zoom call to discuss things live? I'd be happy to organize if there are interested folks. We have so much to learn from one another as this is a very rare condition.?
THIS WILL BE AN INVALUABLE SURVEY
On Monday, March 17, 2025 at 08:12:09 PM EDT, Tim Elersich <mcgauge@...> wrote: SECOND INCIDENT AGE? - never COMPROMISED DISC CUP RATIO?¨C Yes UNAFFECTED EYE - no problem USING OZEMPIC OR SIMILAR NO - No POSSIBLE NOCTURNAL HYPOTENSION - unknown? CAUSAL RELATIONSHIP TO COVID ILLNESS MAYBE - No CAUSAL RELATIONSHIP TO COVID VACCINE MAYBE - No
Tim
THIS WILL BE AN INVALUABLE SURVEY On Mon, 17 Mar 2025 at 05:29, George Ousler via <sailfishin=[email protected]> wrote: 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. On Sunday, March 16, 2025 at 10:57:23 PM EDT, Marc Gold via <marcgold=[email protected]> 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:
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.
|
SEX FEMALE
FIRST INCIDENT AGE 69
CURRENT AGE 71
SECOND INCIDENT AGE ?N/A
COMPROMISED DISC CUP RATIO ?YES
AFFECTED EYE YES
UNAFFECTED EYE YES
USING OZEMPIC OR SIMILAR NO
HYPERTENSION NO
POSSIBLE NOCTURNAL HYPOTENSION YES
DIABETES NO
SLEEP APNOEA NO
CAUSAL RELATIONSHIP TO COVID ILLNESS NO
CAUSAL RELATIONSHIP TO COVID VACCINE MAYBE
STILL DRIVING YES
OTHER? 3 mobths before NAION?onset, I?became severely malnourished due to onset of gluten sensitivity. Developed ?POTS- positional orthotistatic tachycardic syndrome, causing severe low blood pressure drops when going from lying to sitting or standing. This was?most likely a?precipitating factor as I¡¯m negative?for diabetes, high blood pressure, or apnea. I did have a Covid vaccine 1 month before gluten issue started.?
On Monday, March 17, 2025, 12:59 AM, Terry Berelowitz via groups.io <craigberelowitz@...> wrote: 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
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 <marcgold= [email protected]> 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: 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
|
Yes Terry. I agree. Thank you to all who have participated in this survey. It¡¯s been I teresting? On Tue, 18 Mar 2025 at 3:50?pm, Terry Berelowitz via <craigberelowitz= [email protected]> wrote:
I, certainly, am hugely appreciative of all the valuable sharing.?
Thank you to all.?
We are a small group, so it¡¯s a mixture of some anxiety and some comfort to read everyone¡¯s experiences.?
Hoping to hear even more.?
Terry On Tue, 18 Mar 2025 at 06:19, Phil Moskowitz via <Pjmoskowitz= [email protected]> wrote: SEX MALE
FIRST INCIDENT AGE 36
CURRENT AGE 38
SECOND INCIDENT AGE ?N/A
COMPROMISED DISC CUP RATIO
AFFECTED EYE NO
UNAFFECTED EYE NO
USING OZEMPIC OR SIMILAR NO
HYPERTENSION NO
POSSIBLE NOCTURNAL HYPOTENSION NO
DIABETES NO
SLEEP APNEA LOW
CAUSAL RELATIONSHIP TO COVID ILLNESS NO
CAUSAL RELATIONSHIP TO COVID VACCINE Event did not occur near a vaccine but its possible as a long term effect I suppose.
STILL DRIVING YES
OTHER: - slightly elevated cholesterol at time of occurrence. Now on low dose statin 5mg/day crestor and baby aspirin 3-4 times per week. also taking DHA, B3, COQ10, ADK, Zinc, AREDS, and a few others daily.?
- Nearly complete loss of sight in affected eye. Black and white images only. Acuity of 20/800 at best and still a dull/fuzzy picture at best¡. Have found blackout/occlusive contact lens to be very helpful to avoid the haze and distorted vision. Mostly affective when focusing on a certain task (video game, softball/sports, fine precision work, driving). Also installed blind spot cameras on my car with monitors on the dash which helps to not turn my head away from the windshield.
On Mon, Mar 17, 2025 at 12:59?AM Terry Berelowitz via <craigberelowitz= [email protected]> wrote: 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 On Mon, 17 Mar 2025 at 05:29, George Ousler via <sailfishin= [email protected]> 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 <marcgold= [email protected]> 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: 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
|
SEX: Male
FIRST INCIDENT: AGE
48
SECOND INCIDENT
AGE:
48
CURRENT AGE: would
rather not say, for privacy reasons.
COMPROMISED DISC
CUP
RATIO:?
- AFFECTED EYE:
Both
- UNAFFECTED EYE:
N/A
USING OZEMPIC OR
SIMILAR: No
HYPERTENSION: Yes ¨C
developed and diagnosed years after both NAION incidents.
POSSIBLE NOCTURNAL
HYPOTENSION: Unknown. Doctor never recommended 24-hour blood
pressure
testing.
DIABETES: No
SLEEP APNEA: Yes ¨C
Was already well-controlled with CPAP, used consistently each
night,
before and during both NAION incidents.
CAUSAL RELATIONSHIP
TO COVID ILLNESS: No
CAUSAL RELATIONSHIP
TO COVID VACCINE: No
Both of my
incidents
had happened years before the COVID pandemic. Anyway, a series
of events happening to an individual ¨C or the results of an
informal survey like this - cannot prove causation. It takes
proper
scientific studies to prove cause-and-effect.
STILL DRIVING: No
OTHER:?
Tried high-dose
Prednisone by IV for 3 days for the first occurrence. Did not seem
to help, but again, cannot prove it.
STILL DRIVING: No
Tried an experimental treatment - intravitreal (in-eye) injection
of? Lucentis (ranibizumab) - within 10 days of the second
occurrence ¨C was told by the researcher eventually that the
results of the study had been inconclusive, so also no idea if it
had helped in my case. Second eye vision loss was less severe, but
again, it could have been a coincidence.
I was able to return to full-time work from home thanks to
assistive technology and accommodation by employer.
Prismatic lenses are very helpful ¨C directing light to best
remaining part of each eye¡¯s visual field ¨C adjusting angle and
strength of prisms makes a big difference.
Evaluation by low-vision optometrist was essential.
Cocoons sunglasses are very helpful - Green Mirror lens colour
works best for me in daylight outdoors. Other lens colours (e.g.
Lemon) may work at night.
Consultation with low-vision tech specialist was very helpful.
Canadian National
Institute for the Blind (CNIB) has also helped a lot.
I had ataracts starting in both eyes last year ¨C cataracts
diagnosed as slight but I already notice some additional vision
fogging ¨C progressing slowly ¨C Neuro-Opthalmologist says to wait
until fogging becomes strong before considering cataract surgery.
toggle quoted message
Show quoted text
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
On Mon, 17 Mar 2025 at
05:29, George Ousler via <sailfishin= [email protected]>
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 <marcgold= [email protected]>
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:
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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I downloaded ¡°Big Keys¡± keyboard App and am using it for my iphone and my iPad. But you can go to your App Store and search for low vision keyboards and browse the selection to see if there is one that appeals to you. Most have free trials, I suggest you try a few and co¡¯mpare. Some are $1.99 one time fee and others are subscription as cheap as ?$2,99 per month.?
Good luck! Debra B?
can anyone recommend a large print keyboard?
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If you are on windows - windows+u brings up accessibility menu.? The onscreen keyboard may work for you. You can size it to suit your needs.
...
I just converted to Linux mint - I'm using the 'onboard' keyboard - it looks like it is well thought out!
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On 3/17/2025 3:32 PM, David Cattle via
groups.io wrote:
toggle quoted message
Show quoted text
COMPROMISED DISC CUP RATIO?¨C yes
AFFECTED EYE YES ¨C Yes both
USING OZEMPIC OR SIMILAR NO - No
POSSIBLE NOCTURNAL HYPOTENSION - No
CAUSAL RELATIONSHIP TO COVID ILLNESS MAYBE
- No
CAUSAL RELATIONSHIP TO COVID VACCINE MAYBE
- No
OTHER?¨C First eye after overzllous
acupucture in head; second after taking decongestant and in
broken bed. have mild apnea.
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ReeRee
GaryGBrown
Danette Janickovic