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Re: How common is second NAION attack?
Both my eyes happened at the sane time. Left eye a little worse. I have stabilized and pray that my eyes maintain where they are now. Been 10 months.? Cheryl On Sat, May 10, 2025 at 10:33?AM Bestray Pty Ltd via <bestray=[email protected]> wrote:
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Re: Questions re: Visit Summary of Instructions (Pages 1-9 & 10))
Cliff and Debra
I agree with Deborah sometimes we will never know what caused the second event. I had no conditions that any of the doctors could find that could even cause the first event ?and the second was five months later . ?all tests were negative ?and ?I was int ?pretty much perfect health.After my first event they all assured me that my chances of a second event was minimal. My newest NO felt very differently and said it is her experience that the chances of a second event is greater than 30 to 40% over a two to five year period. She noticed the swelling in the second eye before I even had any symptoms and for six weeks I was 2020 and then it got worse even with steroid treatment. Being bilateral is certainly life-changing. Try to go on with your life and enjoy every day.Not knowing what else I could have done has been difficult but overtime I am learning to adapt . My best to all of you ,
Mike |
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Re: How common is second NAION attack?
Just took steroids.?? Funny thing; these events happened in 2002-2003 and I have to say that over time I have gotten used to them or they have mitigated. On Sat, May 10, 2025 at 11:24?AM Chuu chan via <eggwah123=[email protected]> wrote: Hi Jimlely, |
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Re: Sleep Apnea
Thanks for this. I will down load the app!? On Sat, 10 May 2025 at 5:25?pm, aheskin via <aheskin=[email protected]> wrote:
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Re: Sleep Apnea
¿ªÔÆÌåÓýI use a cpap and have gotten very into what happens when I sleep.? There is an app called Oscar that allows you to read the card.? I was told by an N.O. that a single bad? event can cause an attack.? I have an overall average aprea level of a low .6, but I have learned you can not rely on an low average.? On a given night I might have only one event that is high that over the night looks like I had little apnea.? For example last week I had a score of one but that came from a single event of 14 in the middle of the night.? What would have happened with out the cpap.? Also every one in a while I have no apnea until early in the morning and then things seem to go crazy.? Most nights very little happens.? It is frustrating to have to use the machine night after night for that one bad night, but I would rather not have another attack. -------- Original message -------- From: "Bestray Pty Ltd via groups.io" <bestray@...> Date: 5/10/25 7:29 AM (GMT-08:00) Subject: [NAION] Sleep Apnea 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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Re: How common is second NAION attack?
My right eye was affected about 5 months after my left.? Unlike my left eye (which happened overnight),? the right came on gradually. On Sat, May 10, 2025 at 10:33?AM Bestray Pty Ltd via <bestray=[email protected]> wrote:
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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 <bestray=[email protected]> wrote:
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Re: Sleep Apnea
Yes. I was diagnosed with severe sleep apnea many years ago and tried to use the machine but hated it. I stopped using it and two years later, I was struck with NAION. I got it during my sleep. I kicked myself for not preserving with the machine in the first place.? On Sat, 10 May 2025 at 4:29?pm, Bestray Pty Ltd via <bestray=[email protected]> wrote:
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Re: Sleep Apnea
¿ªÔÆÌåÓýI have sleep apnea. Faithful use of a CPAP for 10+ years, right up to being stricken with NAION January, 2025.On May 10, 2025, at 16:29, Bestray Pty Ltd via groups.io <bestray@...> wrote:
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Re: How common is second NAION attack?
¿ªÔÆÌåÓýI recall reading in my early research that ?amongst all stricken once, chance of second eye being affected is 15% within 5 years. Can¡¯t recall the source.Andy W. On May 10, 2025, at 16:33, Bestray Pty Ltd via groups.io <bestray@...> wrote:
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Re: A NAION After Visit Summary of Instructions (Pages 1-9 & 10))
¿ªÔÆÌåÓýHi 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:
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Re: A NAION After Visit Summary of Instructions (Pages 1-9 & 10))
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 <pyroartist=[email protected]> wrote:
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Re: 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
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 ..
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, 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? Best in vision, Debra B |
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Re: 1 / DB: the print version of that YouTube video on NAION
The patient in the YouTube video from Stanford Medical
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 ..
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, 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? 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 ..
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, 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? Best in vision, Debra B |
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