Re: Questions re: Visit Summary of Instructions (Pages 1-9 & 10))
How long have you been staying unilateral?
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Re: Questions re: Visit Summary of Instructions (Pages 1-9 & 10))
Yes for me; about 25% both eyes, though NAION so far in one eye only, but it’s about 90% impaired.
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On May 10, 2025, at 19:11, Deane Williams via groups.io <pyroartist@...> wrote:
?
To everyone:
When you write about your first or second NAION event please let us
know if you have
?a low cup-to-disc ratio in that eye as that would be helpful in
understanding why it may have happened.
Often, that is the number one cause, but not always.
Thank you.
Deane
(moderator)
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: Odds of 2nd attack: 20% w/in 5 years
Did your have sleep apnea in the two attacks?
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Re: Odds of 2nd attack: 20% w/in 5 years
what do you mean? did you have a second attack?
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Re: Odds of 2nd attack: 20% w/in 5 years
Hi Mike
? ? ? ? ? Good to read your message. My events pretty much mirror yours. First eye at 57 years old 2nd event 18 months later again in very good health and given no specific reason. Like you say life changing. Could I ask which country your in
?
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On 10 May 2025, at 21:13, Russ Poter via groups.io <russpoter@...> wrote:
?Asked many times, in last 8 years .. recall data was from Univ of Iowa Medical?
I thought I could take those odds .. I am on year 10
My $0.02 .. stress can be big factor in NAION. So .. reduce stress ..
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I was diagnosed with mild sleep apnea in August 2023
and? my oxygen level dropped to 69% during sleep. Had my first epi of NAION on my right eye on Oct 2023. Had high BP at that time and I think both factors had contributed.?
-- Diane Keasler DLKeasler@...
Life is the school, love is the lesson.
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I was diagnosed with mild sleep apnea in August 2023
and? my oxygen level dropped to 69% during sleep. Had my first epi of NAION on my right eye on Oct 2023. Had high BP at that time and I think both factors had contributed.?
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Odds of 2nd attack: 20% w/in 5 years
Asked many times, in last 8 years .. recall data was from Univ of Iowa Medical?
I thought I could take those odds .. I am on year 10
My $0.02 .. stress can be big factor in NAION. So .. reduce stress ..
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Re: Questions re: Visit Summary of Instructions (Pages 1-9 & 10))
I haven’t been tested specifically for that. Was just told I had crowed blood vessels in my eyes. Thus the anatomy and genetics statement from neuro ophthalmologist.?
Going to discuss cup/disc ration in July for next appointment. Learned about this from the discussions I see here
Cheryl?
On Sat, May 10, 2025 at 1:11?PM Deane Williams via <pyroartist= [email protected]> wrote:
To everyone:
When you write about your first or second NAION event please let us
know if you have
?a low cup-to-disc ratio in that eye as that would be helpful in
understanding why it may have happened.
Often, that is the number one cause, but not always.
Thank you.
Deane
(moderator)
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
|
Re: Questions re: Visit Summary of Instructions (Pages 1-9 & 10))
To everyone:
When you write about your first or second NAION event please let us
know if you have
?a low cup-to-disc ratio in that eye as that would be helpful in
understanding why it may have happened.
Often, that is the number one cause, but not always.
Thank you.
Deane
(moderator)
toggle quoted message
Show quoted text
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
|
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: Hi everyone?
?
By reading messages in this group, I have a feeling that second NAION is much more common than I expected.?
Is it a misperception? Or is it really quite common to have a second attack. I am very worried.
?
thanks
Cliff
?
?
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Re: A NAION After Visit Summary of Instructions (Pages 1-9 & 10))
Do you have any data on the hyperbaric treatment itself? Chamber pressure, duration of each treatment, number of treatments and how many days apart? ? Thank you!?
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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
|
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.
Hi Jimlely,
Did you do anything to stop the second attack from happening? Like using a CPAP machine for sleep apnea?
Cliff
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Thanks for this. I will down load the app!?
I 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 -------- 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
|
I 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.
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-------- 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
|
Re: How common is second NAION attack?
Hi Jimlely,
Did you do anything to stop the second attack from happening? Like using a CPAP machine for sleep apnea?
Cliff
|
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: 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
?
?
|
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: 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 ? 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
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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: 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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