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.
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