Yes, please always consider how and what you are sounding like. Written messages on a forum may be easily misinterpreted.
Consider all angles and be nice.
Deane (moderator)
toggle quoted message
Show quoted text
On 5/12/2025 6:52 PM, Andrew Watson via groups.io wrote: Suggestion: take personal fights off-line and argue til the cows come hoe. My inbox is too full of personal animus whereas I’m looking for helpful suggestions.
|
Re: How common is second NAION attack?
explore accessibility functions on your phone and computer.? "alexa" might come in reall?handy for you right now on both.? my android phone appears to have a "voice control" feature I find really handy.? if you have an android - there's also a program called? "lookout" that seems very helpful.? reads food labels / prescription details / other documents back to you.? it also has an interesting "explore" function that let's your phone's camera describe items in view to you, i.e., "chair", "tv remote", etc.
On Mon, May 12, 2025 at 8:54?AM Pamela Chadick via <apchadick88= [email protected]> wrote: Paul, This is so interesting. I love pickleball and have not been able to play since February. I have tried and my husband and friends have been great about trying to play with me, but it’s so frustrating, that I’ve stopped for now. The driving part is a little crazy and I’m hoping that at my next appt. I will get help with that. I don’t drive at night or in rainy conditions. Depth perception and color has been greatly affected this time around. I have a friend who is completely blind, so, I’m so grateful for all that I do see. But I’m hoping that I can find tools to get back to my independent self again soon! ?
I wear dark green sunglasses, all the time. Helps a bit, stablizes some images
Yellow lenses and brown lenses, also reported to have good outcomes.
On Monday, May 12, 2025 at 05:45:29 AM EDT, Paul Stratford via <p.stratford= [email protected]> wrote:
Hi Pamela I to am bi lateral. The events happened within 18 months of each other. I read at the time that the chances of it happening were 20 to 30%. I thought the second eye going would be catastrophic but life goes on and you do adjust. I still
drive subject to a DVLA eye test every 12 months I’m actually waiting for results at the moment. I only drive in day light and familiar areas. Be interesting to know how other bi lateral suffers get on as regards to driving. Other things I had to give up were
were squash and golf. I have tried pickleball but get frustrated when I lose sight of the ball when it bounces. Tried going back to golf but as soon as the balls air born I lose it. Probably more down to the colour blindness which is as much a problem as sight.
I have struggled with steps and once walked off a promenade on to a beach below lucky no one was sun bathing there. But this is more of a colour and depth issue. Be interesting to see what others have had to give up. On the benefits side because i can’t distinguish
faces very well I tend to stare more and this has led to a lot more people saying hello .Im 10 years on now so have come to terms with no medication and try not to reason why but still get caught out now and again. Have a great day Oaul
?
I have not, but over the years of this group there have been a few people who reported more events.? An NO said that is rare. less than 5%, because the attacks shrink the optic nerve and improve the disk ratio making another event very unlikely.? I am bilateral
but I have not relaxed about protecting my vision.? I still do what I can to defend it like staying away as much as I can from anything the shrinks the blood vessels and taking any heart related drug in the morning.
On 5/11/2025 6:39 AM, Pamela Chadick via wrote:
I ?also have NAION in both eyes. After the first event, I was always told there was only a 15% chance of it recurring in the second eye. The second event has been tough, but I do still see well enough to drive in areas I’m familiar with. The question that has
recently come to mine and I plan to ask at my next appointment is - has anyone had this happen a third time, worsening the damage in either eye?
?Ditto .. data via U of Iowa Medical?
On Sat, May 10, 2025 at 10:54 AM, Andrew Watson via
I 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
<bestray@...> wrote:
?
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
?
?
|
Re: Odds of 2nd attack: 20% w/in 5 years
Suggestion: take personal fights off-line and argue til the cows come hoe. My inbox is too full of personal animus whereas I’m looking for helpful suggestions.
toggle quoted message
Show quoted text
On May 12, 2025, at 18:49, Scott Fuller via groups.io <scottfuller@...> wrote:
?
I give 0.0 f’s about who or what you are. ?I just can’t figure out why every one of these NAION support groups becomes dominated by an angry, argumentative, and know-it-all person who blocks out all useful dialogue between people attempting to share their stories and support each other. ?
On May 12, 2025 at 3:41?PM -0700, Russ Poter via groups.io <russpoter@...>, wrote:
Stone-cold facts, dude --
HIGHLY PROFESSIONAL -- IMMEDIATELY ordered more exams .. cardiac stroke suspected?
FIRST O.D. exam by female?
FIRST O.D. exam by P.O.C.
A bit of advice. If you have 0.0 meaningful to add -- do 0.0.
How do you know that I am not a Black female? Did you ask yourself that?
------
On Mon, May 12, 2025 at 6:10 PM, Scott Fuller via groups.io
<scottfuller@...> wrote:
A bit of advice. ?Ask yourself whether the race of the person in your story has any effect on the story. ?If not, leave it out. ?
|
Re: Odds of 2nd attack: 20% w/in 5 years
I give 0.0 f’s about who or what you are. ?I just can’t figure out why every one of these NAION support groups becomes dominated by an angry, argumentative, and know-it-all person who blocks out all useful dialogue between people attempting to share their stories and support each other. ?
On May 12, 2025 at 3:41?PM -0700, Russ Poter via groups.io <russpoter@...>, wrote:
Stone-cold facts, dude --
HIGHLY PROFESSIONAL -- IMMEDIATELY ordered more exams .. cardiac stroke suspected?
FIRST O.D. exam by female?
FIRST O.D. exam by P.O.C.
A bit of advice. If you have 0.0 meaningful to add -- do 0.0.
How do you know that I am not a Black female? Did you ask yourself that?
------
On Mon, May 12, 2025 at 6:10 PM, Scott Fuller via groups.io
<scottfuller@...> wrote:
A bit of advice. ?Ask yourself whether the race of the person in your story has any effect on the story. ?If not, leave it out. ?
|
Re: Odds of 2nd attack: 20% w/in 5 years
Stone-cold facts, dude --
HIGHLY PROFESSIONAL -- IMMEDIATELY ordered more exams .. cardiac stroke suspected?
FIRST O.D. exam by female?
FIRST O.D. exam by P.O.C.
A bit of advice. If you have 0.0 meaningful to add -- do 0.0.
How do you know that I am not a Black female? Did you ask yourself that? ------
On Mon, May 12, 2025 at 6:10 PM, Scott Fuller via groups.io <scottfuller@...> wrote: A bit of advice. ?Ask yourself whether the race of the person in your story has any effect on the story. ?If not, leave it out. ?
|
Re: Odds of 2nd attack: 20% w/in 5 years
A bit of advice. ?Ask yourself whether the race of the person in your story has any effect on the story. ?If not, leave it out. ?
|
1/ STEROIDS?
You are probably wondering about steroids, with 20% chance of 2nd attack in 5 years.
That is a hard call, and only you can make it, with advice of your N.O. You have the call on this.
Recommend you read up on topic, STAT, and have a plan
On Mon, May 12, 2025 at 2:22 PM, Sharon Paquette via groups.io <Sjpaquette@...> wrote:
I had my first occurrence of NAION last August and I lost about 80% of my vision in that eye. It was a huge adjustment. I have high blood pressure and I’m diabetic and I also have crowded discs. I was taking my BP meds at night and my ON told me to stop doing that and take it in the morning. I was on Ozempic for a year before the occurrence and I stopped that immediately. The plan now is to do all I can to hopefully keep it from happening in my left eye, so?I now have a sleep study scheduled.
Is it normal to have that much vision loss with NAION? Most of the vision is gone, looks gray. The other 20% is blurry so I don’t see anything clearly. If the same happens in my left eye, I would essentially be blind. It’s scary!
On Monday, May 12, 2025, 5:04 AM, eyenul via groups.io <eyenull@...> wrote: Chiarina,
?
Have your? naion settled in? Mine doesnt seem so since February. My vision has deteriorated but the NO believe I am worry too much.
|
Regrets on events .. it is very tough
About OZEMPIC .. hard to say if causal. TO BE CLEAR .. all pharms carry risk. To think otherwise is insane. That is why there are medical colleges -- this is complex.
Sleep study .. CPAP can help .. also surgical approaches (which can be painful)
Vision loss is variable .. some heavy .. sometimes light. Many variables involved.
Step by step, day by day. Your NO system will adjust in time. Study low vision practices, be prepared.
Good luck ..
On Mon, May 12, 2025 at 2:22 PM, Sharon Paquette via groups.io <Sjpaquette@...> wrote:
I had my first occurrence of NAION last August and I lost about 80% of my vision in that eye. It was a huge adjustment. I have high blood pressure and I’m diabetic and I also have crowded discs. I was taking my BP meds at night and my ON told me to stop doing that and take it in the morning. I was on Ozempic for a year before the occurrence and I stopped that immediately. The plan now is to do all I can to hopefully keep it from happening in my left eye, so?I now have a sleep study scheduled.
Is it normal to have that much vision loss with NAION? Most of the vision is gone, looks gray. The other 20% is blurry so I don’t see anything clearly. If the same happens in my left eye, I would essentially be blind. It’s scary!
On Monday, May 12, 2025, 5:04 AM, eyenul via groups.io <eyenull@...> wrote: Chiarina,
?
Have your? naion settled in? Mine doesnt seem so since February. My vision has deteriorated but the NO believe I am worry too much.
|
Sharon, I also had a massive loss >80% in my right eye. No further damage in my unaffected 20/20 eye since 2007. Sleep apnea (moderate)was the causal factor and I am so glad you are doing a sleep study. But absolutely no BP drugs at night. There is life after NAION it is just initially so catastrophic to understand that at its terrifying onset. "hope is the thing with feathers" (Woody Allen)
Regards, Eileen ___________________________________________________________________________________
On Monday, May 12, 2025 at 02:22:41 PM EDT, Sharon Paquette via groups.io <sjpaquette@...> wrote:
Sharon,
I had my first occurrence of NAION last August and I lost about 80% of my vision in that eye. It was a huge adjustment. I have high blood pressure and I’m diabetic and I also have crowded discs. I was taking my BP meds at night and my ON told me to stop doing that and take it in the morning. I was on Ozempic for a year before the occurrence and I stopped that immediately. The plan now is to do all I can to hopefully keep it from happening in my left eye, so?I now have a sleep study scheduled.
Is it normal to have that much vision loss with NAION? Most of the vision is gone, looks gray. The other 20% is blurry so I don’t see anything clearly. If the same happens in my left eye, I would essentially be blind. It’s scary!
On Monday, May 12, 2025, 5:04 AM, eyenul via groups.io <eyenull@...> wrote: Chiarina,
?
Have your? naion settled in? Mine doesnt seem so since February. My vision has deteriorated but the NO believe I am worry too much.
|
It is so worrisome, Sharon!
My NAION is also in my right eye (since July 22) and my vision loss is at least as great as yours.? Protecting my left eye, attempting to maintain steady blood pressure, is my main objective.? Diet and exercise, no stress, staying hydrated,? no pharmaceuticals other than daily thyroid pill.
I think the vasoconstrictor, epinephrine, in the numbing shot I received, along with the cortisone shot I got at the same time, may have spiked my BP and triggered my NAION.? Initially I had only lost the bottom half of my vision in my right eye and that wasn't so bad.? Only being told by NO I saw at Duke that there was nothing to be done AND not being warned that while my optic nerve was still swollen and it was July, I needed to stay hydrated, I continued to play golf in the heat and humidity of central NC. Dehydration lowers BP.? Within two weeks I lost almost all my vision and all my acuity in?my?right eye.? I thank God regularly that I still have good corrected vision in my left eye.
I do feel your pain!
On Mon, May 12, 2025 at 2:22?PM Sharon Paquette via <Sjpaquette= [email protected]> wrote:
I had my first occurrence of NAION last August and I lost about 80% of my vision in that eye. It was a huge adjustment. I have high blood pressure and I’m diabetic and I also have crowded discs. I was taking my BP meds at night and my ON told me to stop doing that and take it in the morning. I was on Ozempic for a year before the occurrence and I stopped that immediately. The plan now is to do all I can to hopefully keep it from happening in my left eye, so?I now have a sleep study scheduled.
Is it normal to have that much vision loss with NAION? Most of the vision is gone, looks gray. The other 20% is blurry so I don’t see anything clearly. If the same happens in my left eye, I would essentially be blind. It’s scary!
On Monday, May 12, 2025, 5:04 AM, eyenul via <eyenull=[email protected]> wrote: Chiarina,
?
Have your? naion settled in? Mine doesnt seem so since February. My vision has deteriorated but the NO believe I am worry too much.
-- Diane Keasler DLKeasler@...
Life is the school, love is the lesson.
|
I had my first occurrence of NAION last August and I lost about 80% of my vision in that eye. It was a huge adjustment. I have high blood pressure and I’m diabetic and I also have crowded discs. I was taking my BP meds at night and my ON told me to stop doing that and take it in the morning. I was on Ozempic for a year before the occurrence and I stopped that immediately. The plan now is to do all I can to hopefully keep it from happening in my left eye, so?I now have a sleep study scheduled.
Is it normal to have that much vision loss with NAION? Most of the vision is gone, looks gray. The other 20% is blurry so I don’t see anything clearly. If the same happens in my left eye, I would essentially be blind. It’s scary!
On Monday, May 12, 2025, 5:04 AM, eyenul via groups.io <eyenull@...> wrote: Chiarina,
?
Have your? naion settled in? Mine doesnt seem so since February. My vision has deteriorated but the NO believe I am worry too much.
|
Re: A NAION After Visit Summary of Instructions (Pages 1-9 & 10))
Is there another zoom scheduled
toggle quoted message
Show quoted text
On May 10, 2025, at 10:18?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 <pyroartist= [email protected]> 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
wrote:
Thank you Debra. Really appreciate it.
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
|
AFFORDABLE TINTED GLASSES
My supplier ..?
I've also tried light blue (like Bono of U2) .. in addition to dark green, brown, yellow
On Monday, May 12, 2025 at 09:51:13 AM EDT, Dina Zirlin via groups.io <dinazirlin3@...> wrote:
My hubby has bilateral NAION. He wears yellow glasses over his prescription glasses which help but with the summer sun they are not reducing the light sensitivity enough for him to be comfortable outside.? Has anyone had prescription sunglasses made then wear the yellow glasses over them? Apparently they cannot make sunglasses and yellow glasses in one.? Thanks
I wear dark green sunglasses, all the time. Helps a bit, stablizes some images
Yellow lenses and brown lenses, also reported to have good outcomes.
On Monday, May 12, 2025 at 05:45:29 AM EDT, Paul Stratford via <p.stratford= [email protected]> wrote:
Hi Pamela I to am bi lateral. The events happened within 18 months of each other. I read at the time that the chances of it happening were 20 to 30%. I thought the second eye going would be catastrophic but life goes on and you do adjust. I still
drive subject to a DVLA eye test every 12 months I’m actually waiting for results at the moment. I only drive in day light and familiar areas. Be interesting to know how other bi lateral suffers get on as regards to driving. Other things I had to give up were
were squash and golf. I have tried pickleball but get frustrated when I lose sight of the ball when it bounces. Tried going back to golf but as soon as the balls air born I lose it. Probably more down to the colour blindness which is as much a problem as sight.
I have struggled with steps and once walked off a promenade on to a beach below lucky no one was sun bathing there. But this is more of a colour and depth issue. Be interesting to see what others have had to give up. On the benefits side because i can’t distinguish
faces very well I tend to stare more and this has led to a lot more people saying hello .Im 10 years on now so have come to terms with no medication and try not to reason why but still get caught out now and again. Have a great day Oaul
?
I have not, but over the years of this group there have been a few people who reported more events.? An NO said that is rare. less than 5%, because the attacks shrink the optic nerve and improve the disk ratio making another event very unlikely.? I am bilateral
but I have not relaxed about protecting my vision.? I still do what I can to defend it like staying away as much as I can from anything the shrinks the blood vessels and taking any heart related drug in the morning.
On 5/11/2025 6:39 AM, Pamela Chadick via wrote:
I ?also have NAION in both eyes. After the first event, I was always told there was only a 15% chance of it recurring in the second eye. The second event has been tough, but I do still see well enough to drive in areas I’m familiar with. The question that has
recently come to mine and I plan to ask at my next appointment is - has anyone had this happen a third time, worsening the damage in either eye?
?Ditto .. data via U of Iowa Medical?
On Sat, May 10, 2025 at 10:54 AM, Andrew Watson via
I 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
<bestray@...> wrote:
?
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
?
?
|
Re: How common is second NAION attack?
Paul, This is so interesting. I love pickleball and have not been able to play since February. I have tried and my husband and friends have been great about trying to play with me, but it’s so frustrating, that I’ve stopped for now. The driving part is a little crazy and I’m hoping that at my next appt. I will get help with that. I don’t drive at night or in rainy conditions. Depth perception and color has been greatly affected this time around. I have a friend who is completely blind, so, I’m so grateful for all that I do see. But I’m hoping that I can find tools to get back to my independent self again soon!
toggle quoted message
Show quoted text
On May 12, 2025, at 8:41?AM, Russ Poter via groups.io <russpoter@...> wrote:
?
I wear dark green sunglasses, all the time. Helps a bit, stablizes some images
Yellow lenses and brown lenses, also reported to have good outcomes.
On Monday, May 12, 2025 at 05:45:29 AM EDT, Paul Stratford via groups.io <p.stratford@...> wrote:
Hi Pamela I to am bi lateral. The events happened within 18 months of each other. I read at the time that the chances of it happening were 20 to 30%. I thought the second eye going would be catastrophic but life goes on and you do adjust. I still
drive subject to a DVLA eye test every 12 months I’m actually waiting for results at the moment. I only drive in day light and familiar areas. Be interesting to know how other bi lateral suffers get on as regards to driving. Other things I had to give up were
were squash and golf. I have tried pickleball but get frustrated when I lose sight of the ball when it bounces. Tried going back to golf but as soon as the balls air born I lose it. Probably more down to the colour blindness which is as much a problem as sight.
I have struggled with steps and once walked off a promenade on to a beach below lucky no one was sun bathing there. But this is more of a colour and depth issue. Be interesting to see what others have had to give up. On the benefits side because i can’t distinguish
faces very well I tend to stare more and this has led to a lot more people saying hello .Im 10 years on now so have come to terms with no medication and try not to reason why but still get caught out now and again. Have a great day Oaul
On 11 May 2025, at 15:00, aheskin via groups.io <aheskin@...> wrote:
?
I have not, but over the years of this group there have been a few people who reported more events.? An NO said that is rare. less than 5%, because the attacks shrink the optic nerve and improve the disk ratio making another event very unlikely.? I am bilateral
but I have not relaxed about protecting my vision.? I still do what I can to defend it like staying away as much as I can from anything the shrinks the blood vessels and taking any heart related drug in the morning.
On 5/11/2025 6:39 AM, Pamela Chadick via groups.io wrote:
I ?also have NAION in both eyes. After the first event, I was always told there was only a 15% chance of it recurring in the second eye. The second event has been tough, but I do still see well enough to drive in areas I’m familiar with. The question that has
recently come to mine and I plan to ask at my next appointment is - has anyone had this happen a third time, worsening the damage in either eye?
On May 11, 2025, at 7:32?AM, Russ Poter via groups.io
<russpoter@...> wrote:
?Ditto .. data via U of Iowa Medical?
On Sat, May 10, 2025 at 10:54 AM, Andrew Watson via groups.io
I 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:
?
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
?
?
|
Re: How common is second NAION attack?
My hubby has bilateral NAION. He wears yellow glasses over his prescription glasses which help but with the summer sun they are not reducing the light sensitivity enough for him to be comfortable outside.? Has anyone had prescription sunglasses made then wear the yellow glasses over them? Apparently they cannot make sunglasses and yellow glasses in one.? Thanks
I wear dark green sunglasses, all the time. Helps a bit, stablizes some images
Yellow lenses and brown lenses, also reported to have good outcomes.
On Monday, May 12, 2025 at 05:45:29 AM EDT, Paul Stratford via <p.stratford= [email protected]> wrote:
Hi Pamela I to am bi lateral. The events happened within 18 months of each other. I read at the time that the chances of it happening were 20 to 30%. I thought the second eye going would be catastrophic but life goes on and you do adjust. I still
drive subject to a DVLA eye test every 12 months I’m actually waiting for results at the moment. I only drive in day light and familiar areas. Be interesting to know how other bi lateral suffers get on as regards to driving. Other things I had to give up were
were squash and golf. I have tried pickleball but get frustrated when I lose sight of the ball when it bounces. Tried going back to golf but as soon as the balls air born I lose it. Probably more down to the colour blindness which is as much a problem as sight.
I have struggled with steps and once walked off a promenade on to a beach below lucky no one was sun bathing there. But this is more of a colour and depth issue. Be interesting to see what others have had to give up. On the benefits side because i can’t distinguish
faces very well I tend to stare more and this has led to a lot more people saying hello .Im 10 years on now so have come to terms with no medication and try not to reason why but still get caught out now and again. Have a great day Oaul
?
I have not, but over the years of this group there have been a few people who reported more events.? An NO said that is rare. less than 5%, because the attacks shrink the optic nerve and improve the disk ratio making another event very unlikely.? I am bilateral
but I have not relaxed about protecting my vision.? I still do what I can to defend it like staying away as much as I can from anything the shrinks the blood vessels and taking any heart related drug in the morning.
On 5/11/2025 6:39 AM, Pamela Chadick via wrote:
I ?also have NAION in both eyes. After the first event, I was always told there was only a 15% chance of it recurring in the second eye. The second event has been tough, but I do still see well enough to drive in areas I’m familiar with. The question that has
recently come to mine and I plan to ask at my next appointment is - has anyone had this happen a third time, worsening the damage in either eye?
?Ditto .. data via U of Iowa Medical?
On Sat, May 10, 2025 at 10:54 AM, Andrew Watson via
I 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
<bestray@...> wrote:
?
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
?
?
|
Re: How common is second NAION attack?
I wear dark green sunglasses, all the time. Helps a bit, stablizes some images
Yellow lenses and brown lenses, also reported to have good outcomes.
On Monday, May 12, 2025 at 05:45:29 AM EDT, Paul Stratford via groups.io <p.stratford@...> wrote:
Hi Pamela I to am bi lateral. The events happened within 18 months of each other. I read at the time that the chances of it happening were 20 to 30%. I thought the second eye going would be catastrophic but life goes on and you do adjust. I still
drive subject to a DVLA eye test every 12 months I’m actually waiting for results at the moment. I only drive in day light and familiar areas. Be interesting to know how other bi lateral suffers get on as regards to driving. Other things I had to give up were
were squash and golf. I have tried pickleball but get frustrated when I lose sight of the ball when it bounces. Tried going back to golf but as soon as the balls air born I lose it. Probably more down to the colour blindness which is as much a problem as sight.
I have struggled with steps and once walked off a promenade on to a beach below lucky no one was sun bathing there. But this is more of a colour and depth issue. Be interesting to see what others have had to give up. On the benefits side because i can’t distinguish
faces very well I tend to stare more and this has led to a lot more people saying hello .Im 10 years on now so have come to terms with no medication and try not to reason why but still get caught out now and again. Have a great day Oaul
On 11 May 2025, at 15:00, aheskin via groups.io <aheskin@...> wrote:
?
I have not, but over the years of this group there have been a few people who reported more events.? An NO said that is rare. less than 5%, because the attacks shrink the optic nerve and improve the disk ratio making another event very unlikely.? I am bilateral
but I have not relaxed about protecting my vision.? I still do what I can to defend it like staying away as much as I can from anything the shrinks the blood vessels and taking any heart related drug in the morning.
On 5/11/2025 6:39 AM, Pamela Chadick via groups.io wrote:
I ?also have NAION in both eyes. After the first event, I was always told there was only a 15% chance of it recurring in the second eye. The second event has been tough, but I do still see well enough to drive in areas I’m familiar with. The question that has
recently come to mine and I plan to ask at my next appointment is - has anyone had this happen a third time, worsening the damage in either eye?
On May 11, 2025, at 7:32?AM, Russ Poter via groups.io
<russpoter@...> wrote:
?Ditto .. data via U of Iowa Medical?
On Sat, May 10, 2025 at 10:54 AM, Andrew Watson via groups.io
I 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:
?
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
?
?
|
Re: Odds of 2nd attack: 20% w/in 5 years
Repeating .. MY NAION ATTACK
Happened at Walmart eyeglass shop .. after months of very hard work .. left eye went DARK? .. O.D. (nice Black lady) said "Go to M.D., NOW M.D., next day .. "Calling N.O. for you, NOW" N.O. (rated 5/10) .. tedious response .. 0.0 on steroids
Could steroids have helped? Hard call .. so many factors .. time .. amount of damage .. And I did NOT have that option, due to the tedious N.O.
On Sunday, May 11, 2025 at 10:11:00 PM EDT, Mstusick@... via groups.io <mstusick@...> wrote:
I am in Michigan.Although trying to protect the second eye was stressful, being bilateral is tough.Medicine is really letting all of us down.It is because there is not enough money for big pharmaceutical companies. Might change with Ozempic ?news.Telling everyone there is no tx and no reason is hard to accept.I think there will be help but only if some will think outside the box . I am convinced the steroids I took for my second eye made a I big difference but only because I started then very early before there was vision loss just some changes in eye .They are hard on your body and not everyone can take them .Anyone who tells you they are not the standard of care is protecting themselves .The studies that show they don’t help is because they are almost always too late.once the nerve is in the cycle of continual edema the retinal cells have died from the pressure.? Stay positive? Mike On May 11, 2025, at 1:14?AM, Bestray Pty Ltd via groups.io <bestray@...> wrote:
? Did your have sleep apnea in the two attacks?
|
Re: How common is second NAION attack?
Hi Pamela I to am bi lateral. The events happened within 18 months of each other. I read at the time that the chances of it happening were 20 to 30%. I thought the second eye going would be catastrophic but life goes on and you do adjust. I still
drive subject to a DVLA eye test every 12 months I’m actually waiting for results at the moment. I only drive in day light and familiar areas. Be interesting to know how other bi lateral suffers get on as regards to driving. Other things I had to give up were
were squash and golf. I have tried pickleball but get frustrated when I lose sight of the ball when it bounces. Tried going back to golf but as soon as the balls air born I lose it. Probably more down to the colour blindness which is as much a problem as sight.
I have struggled with steps and once walked off a promenade on to a beach below lucky no one was sun bathing there. But this is more of a colour and depth issue. Be interesting to see what others have had to give up. On the benefits side because i can’t distinguish
faces very well I tend to stare more and this has led to a lot more people saying hello .Im 10 years on now so have come to terms with no medication and try not to reason why but still get caught out now and again. Have a great day Oaul
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On 11 May 2025, at 15:00, aheskin via groups.io <aheskin@...> wrote:
?
I have not, but over the years of this group there have been a few people who reported more events.? An NO said that is rare. less than 5%, because the attacks shrink the optic nerve and improve the disk ratio making another event very unlikely.? I am bilateral
but I have not relaxed about protecting my vision.? I still do what I can to defend it like staying away as much as I can from anything the shrinks the blood vessels and taking any heart related drug in the morning.
On 5/11/2025 6:39 AM, Pamela Chadick via groups.io wrote:
I ?also have NAION in both eyes. After the first event, I was always told there was only a 15% chance of it recurring in the second eye. The second event has been tough, but I do still see well enough to drive in areas I’m familiar with. The question that has
recently come to mine and I plan to ask at my next appointment is - has anyone had this happen a third time, worsening the damage in either eye?
On May 11, 2025, at 7:32?AM, Russ Poter via groups.io
<russpoter@...> wrote:
?Ditto .. data via U of Iowa Medical?
On Sat, May 10, 2025 at 10:54 AM, Andrew Watson via groups.io
I 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:
?
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
?
?
|
Chiarina,
?
Have your? naion settled in? Mine doesnt seem so since February. My vision has deteriorated but the NO believe I am worry too much.
|
Re: Odds of 2nd attack: 20% w/in 5 years
I am in Michigan.Although trying to protect the second eye was stressful, being bilateral is tough.Medicine is really letting all of us down.It is because there is not enough money for big pharmaceutical companies. Might change with Ozempic ?news.Telling everyone there is no tx and no reason is hard to accept.I think there will be help but only if some will think outside the box . I am convinced the steroids I took for my second eye made a I big difference but only because I started then very early before there was vision loss just some changes in eye .They are hard on your body and not everyone can take them .Anyone who tells you they are not the standard of care is protecting themselves .The studies that show they don’t help is because they are almost always too late.once the nerve is in the cycle of continual edema the retinal cells have died from the pressure.? Stay positive?
toggle quoted message
Show quoted text
On May 11, 2025, at 1:14?AM, Bestray Pty Ltd via groups.io <bestray@...> wrote:
? Did your have sleep apnea in the two attacks?
|
