There are alleged clinics in Germany and Moscow that make treatment claims about NAION, charging $25,000. Actually reading NIH documents -- and thinking seriously -- deter those with good sense.
Go to Berlin or Moscow. No one is stopping you. Get happy, pal.
On Sun, May 11, 2025 at 7:34 PM, Phil Moskowitz via groups.io <Pjmoskowitz@...> wrote: Russ, no need to attack anyone. Save that for Peter¡¯s authoritarian Facebook page that half of us have been kicked out of.
No one is selling snake oil or false promises. The HBOT anecdote is just that, an anecdote. No one is saying it¡¯s scientifically proven as a ¡°cure¡±, but in her case it worked for her. If someone has the means to try and has no expectation as it being ¡°proven to work¡± let them try it¡.. personally, my ¡°what if¡± of not trying weighs more heavily than the funds I would loose. Each persons risk tolerance and bank account is different.?
There¡¯s value in caution, but zero value in you attacking others.
Pal, you think you know more than those cited by NIH -- step forward. Waiting..
On Sun, May 11, 2025 at 4:56 PM, Deane Williams
Russ, No need to complain. On May 9th? I asked if her 22 month old
NAION case in her other eye was helped by the Oxygen treatment (as
well as the recent attack on the second eye) and on May 10th she
said it was helped dramatically.? That leaves room for
optimism.
Perhaps you missed that. It is reproduced below:
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
|
Re: Hyperbaric oxygen therapy (HBOT) & NAION: Google A.I. search
You don't read JAMA or NEJM do you? It shows.
Stop attacking those who do. You are not a Kennedy. Good luck.
On Sun, May 11, 2025 at 7:34 PM, Phil Moskowitz via groups.io <Pjmoskowitz@...> wrote: Russ, no need to attack anyone. Save that for Peter¡¯s authoritarian Facebook page that half of us have been kicked out of.
No one is selling snake oil or false promises. The HBOT anecdote is just that, an anecdote. No one is saying it¡¯s scientifically proven as a ¡°cure¡±, but in her case it worked for her. If someone has the means to try and has no expectation as it being ¡°proven to work¡± let them try it¡.. personally, my ¡°what if¡± of not trying weighs more heavily than the funds I would loose. Each persons risk tolerance and bank account is different.?
There¡¯s value in caution, but zero value in you attacking others.
Pal, you think you know more than those cited by NIH -- step forward. Waiting..
On Sun, May 11, 2025 at 4:56 PM, Deane Williams
Russ, No need to complain. On May 9th? I asked if her 22 month old
NAION case in her other eye was helped by the Oxygen treatment (as
well as the recent attack on the second eye) and on May 10th she
said it was helped dramatically.? That leaves room for
optimism.
Perhaps you missed that. It is reproduced below:
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
|
Re: Hyperbaric oxygen therapy (HBOT) & NAION: Google A.I. search
Russ, no need to attack anyone. Save that for Peter¡¯s authoritarian Facebook page that half of us have been kicked out of.
No one is selling snake oil or false promises. The HBOT anecdote is just that, an anecdote. No one is saying it¡¯s scientifically proven as a ¡°cure¡±, but in her case it worked for her. If someone has the means to try and has no expectation as it being ¡°proven to work¡± let them try it¡.. personally, my ¡°what if¡± of not trying weighs more heavily than the funds I would loose. Each persons risk tolerance and bank account is different.?
There¡¯s value in caution, but zero value in you attacking others.
Pal, you think you know more than those cited by NIH -- step forward. Waiting..
On Sun, May 11, 2025 at 4:56 PM, Deane Williams
Russ, No need to complain. On May 9th? I asked if her 22 month old
NAION case in her other eye was helped by the Oxygen treatment (as
well as the recent attack on the second eye) and on May 10th she
said it was helped dramatically.? That leaves room for
optimism.
Perhaps you missed that. It is reproduced below:
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
|
Re: 1 / Hyperbaric oxygen therapy (HBOT) & NAION: Google A.I. search
Light involves angles, to sight. Most of us have noted sometimes, if we tilt our heads, things can be clearer. Works for me .. damage is bottom 1/3 of left eye
On Sun, May 11, 2025 at 7:06 PM, ReeRee via groups.io <Kycouch@...> wrote: So good to know I am not the only one! Cheryl? On Sun, May 11, 2025 at 7:04?PM Chiarina Blake via <jc.blake2= [email protected]> wrote: Interesting. So you too have good and bad sight days. My vision clarity is different each day. So this is normal?? What also happens .. conditions change .. the brain adjusts to compensate.. things get better.
Physics of light are complex. Sometimes I can see OK .. sometimes not.
On Sun, May 11, 2025 at 4:56 PM, Deane Williams
Russ, No need to complain. On May 9th? I asked if her 22 month old
NAION case in her other eye was helped by the Oxygen treatment (as
well as the recent attack on the second eye) and on May 10th she
said it was helped dramatically.? That leaves room for
optimism.
Perhaps you missed that. It is reproduced below:
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
|
Re: 1 / Hyperbaric oxygen therapy (HBOT) & NAION: Google A.I. search
So good to know I am not the only one! Cheryl?
On Sun, May 11, 2025 at 7:04?PM Chiarina Blake via <jc.blake2= [email protected]> wrote: Interesting. So you too have good and bad sight days. My vision clarity is different each day. So this is normal?? What also happens .. conditions change .. the brain adjusts to compensate.. things get better.
Physics of light are complex. Sometimes I can see OK .. sometimes not.
On Sun, May 11, 2025 at 4:56 PM, Deane Williams
Russ, No need to complain. On May 9th? I asked if her 22 month old
NAION case in her other eye was helped by the Oxygen treatment (as
well as the recent attack on the second eye) and on May 10th she
said it was helped dramatically.? That leaves room for
optimism.
Perhaps you missed that. It is reproduced below:
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
|
Re: 1 / Hyperbaric oxygen therapy (HBOT) & NAION: Google A.I. search
Interesting. So you too have good and bad sight days. My vision clarity is different each day. So this is normal??
What also happens .. conditions change .. the brain adjusts to compensate.. things get better.
Physics of light are complex. Sometimes I can see OK .. sometimes not.
On Sun, May 11, 2025 at 4:56 PM, Deane Williams
Russ, No need to complain. On May 9th? I asked if her 22 month old
NAION case in her other eye was helped by the Oxygen treatment (as
well as the recent attack on the second eye) and on May 10th she
said it was helped dramatically.? That leaves room for
optimism.
Perhaps you missed that. It is reproduced below:
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
|
1 / Hyperbaric oxygen therapy (HBOT) & NAION: Google A.I. search
What also happens .. conditions change .. the brain adjusts to compensate.. things get better.
Physics of light are complex. Sometimes I can see OK .. sometimes not.
On Sun, May 11, 2025 at 4:56 PM, Deane Williams <pyroartist@...> wrote:
Russ, No need to complain. On May 9th? I asked if her 22 month old
NAION case in her other eye was helped by the Oxygen treatment (as
well as the recent attack on the second eye) and on May 10th she
said it was helped dramatically.? That leaves room for
optimism.
Perhaps you missed that. It is reproduced below:
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
|
Re: Hyperbaric oxygen therapy (HBOT) & NAION: Google A.I. search
Pal, you think you know more than those cited by NIH -- step forward. Waiting..
On Sun, May 11, 2025 at 4:56 PM, Deane Williams <pyroartist@...> wrote:
Russ, No need to complain. On May 9th? I asked if her 22 month old
NAION case in her other eye was helped by the Oxygen treatment (as
well as the recent attack on the second eye) and on May 10th she
said it was helped dramatically.? That leaves room for
optimism.
Perhaps you missed that. It is reproduced below:
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
|
Re: Hyperbaric oxygen therapy (HBOT) & NAION: Google A.I. search
Russ, No need to complain. On May 9th? I asked if her 22 month old
NAION case in her other eye was helped by the Oxygen treatment (as
well as the recent attack on the second eye) and on May 10th she
said it was helped dramatically.? That leaves room for
optimism.
Perhaps you missed that. It is reproduced below:
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
|
Re: Hyperbaric oxygen therapy (HBOT) & NAION: Google A.I. search
Yes but it seems it helped our fellow NAION victim. If you can pay for it what¡¯s wrong with trying it Russ??
>>Oh, yeah, ignore MD/PhDs. Brilliant. Just like rfkjr?
You need to read. Her case was IMMEDIATE ON-SET .. not weeks old/months old/years old. Uh-huh?
As long as we continue to shoot down possible therapies we will get no where and we will remove hope.?
>> "He who counsels himself.. has a fool for a client" And your MD degree is from Google U.?
By any chance are you the moderator of the Facebook NAION page??
>> Look in the mirror, dude. You are his twin. Congratulations.
On Sun, May 11, 2025 at 12:08 PM, GaryGBrown via groups.io <bhmvol@...> wrote: Yes but it seems it helped our fellow NAION victim. If you can pay for it what¡¯s wrong with trying it Russ? As long as we continue to shoot down possible therapies we will get no where and we will remove hope. We all understand hope is slim for us during our lifetimes but many of us are willing to try if there is only a glimmer of hope. By any chance are you the moderator of the Facebook NAION page??
|
Re: How common is second NAION attack?
That is what I was told to.
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Show quoted text
-------- Original message -------- From: "GaryGBrown via groups.io" <bhmvol@...> Date: 5/11/25 10:24 AM (GMT-08:00) Subject: Re: [NAION] How common is second NAION attack?
I¡¯m very confused with this idea. ?My NO specifically said to stop taking BP meds at night as blood pressure is naturally lower at night. ?The before bedtime pill could lead to below normal BP and lead to an ischemic attack. My cardiologist agreed. ?I now take both an ace inhibitor and a beta blocker in the morning.?
|
Re: How common is second NAION attack?
I¡¯m very confused with this idea. ?My NO specifically said to stop taking BP meds at night as blood pressure is naturally lower at night. ?The before bedtime pill could lead to below normal BP and lead to an ischemic attack. My cardiologist agreed. ?I now take both an ace inhibitor and a beta blocker in the morning.?
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Re: How common is second NAION attack?
Hi Cliff, My first event occurred 20 years ago - I was 41. Second event was this past February. I¡¯ve always seen my NO and at times taken eye drops to keep the pressure very low. Always been told just to protect my left eye (20/20 vision in that eye) and that it would be very rare for it to occur again. I¡¯m not diabetic, don¡¯t have high blood pressure, don¡¯t have sleep apnea. My doc says it is my anatomy.
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Show quoted text
On May 11, 2025, at 8:55?AM, Bestray Pty Ltd via groups.io <bestray@...> wrote:
?Hi Pamela,
How long apart between the two attacks?
What did you do to prevent the second attack? Sleep apnea with CPAP?
Cliff
|
Re: Hyperbaric oxygen therapy (HBOT) & NAION: Google A.I. search
Yes but it seems it helped our fellow NAION victim. If you can pay for it what¡¯s wrong with trying it Russ? As long as we continue to shoot down possible therapies we will get no where and we will remove hope. We all understand hope is slim for us during our lifetimes but many of us are willing to try if there is only a glimmer of hope. By any chance are you the moderator of the Facebook NAION page??
|
Hyperbaric oxygen therapy (HBOT) & NAION: Google A.I. search
Hyperbaric oxygen therapy (HBOT) has not been proven to be a beneficial treatment for non-arteritic anterior ischemic optic neuropathy (NAION), a condition causing vision loss. While HBOT can increase tissue oxygenation, it has not shown significant improvements in visual acuity or visual field in NAION patients. Some studies suggest potential benefits in certain cases, but more research is needed, and there is no widespread consensus on its efficacy for NAION. [, , , , , , ] Elaboration: [, , , ] - NAION: NAION is a common cause of sudden vision loss in people over 50, affecting the optic nerve. [, , , ]
- Hyperbaric Oxygen Therapy (HBOT): HBOT involves breathing 100% oxygen under increased pressure, aiming to deliver more oxygen to tissues, including the optic nerve. [, , , ]
- Research Findings: Several studies have investigated HBOT for NAION, but the results are mixed. Some studies show no significant benefit in visual acuity or visual field, while others suggest potential benefits, especially in cases where treatment is started early. [, , , , , , , ]
- Mechanism of Action: HBOT may work by increasing tissue oxygenation, which can reduce damage to the optic nerve due to ischemia (reduced blood flow). [, , , ]
- Current Recommendations: There is no widely accepted recommendation for using HBOT as a primary or adjunctive treatment for NAION, and it is not routinely used. [, , , , , ]
- Alternative Treatments: Other potential treatments for NAION include optimizing vascular risk factors, addressing underlying conditions, and in some cases, intravitreal injections of anti-vascular endothelial growth factor (VEGF) agents. [, , , , , , , , ]
AI responses may include mistakes. [1]? [2]? [3]? [4]? [5]? [6]? [7]? [8]? [9]? [10]? [11]? [12]? [13]? [14]? [15]? [16]? [17]?
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UPDATED: 2nd NAION attack -- Google A.I. search results
A "second" NAION attack refers to a recurrence of NAION in the same eye, which is rare. A second attack in a different eye (bilateral NAION) is more common, with approximately 15% of individuals with NAION in one eye developing it in the other within 5 years. [, ] Elaboration: [, ] - Recurrence in the same eye is rare: While a second attack of NAION in the same eye has been documented with the arteritic form (associated with giant cell arteritis), it is not typically seen with the non-arteritic form (NAION). [, , ]
- Bilateral NAION is more common: A second attack in the other eye (bilateral NAION) is more frequent, with about 15% of people experiencing it within 5 years of the initial attack. [, , ]
- Risk factors for bilateral NAION: Conditions like diabetes and obstructive sleep apnea can increase the risk of developing NAION in the second eye. Compliance with CPAP therapy in obstructive sleep apnea may help reduce the risk of a second attack, according to the North American Neuro-Ophthalmology Society. [, , ]
- Visual prognosis: Once vision in the affected eye stabilizes (typically within 2 months), further deterioration is not expected. [, , , ]
- Early diagnosis and management are crucial: If vision loss worsens or progresses beyond the expected timeframe, a re-evaluation should be conducted to rule out other causes. [, ]
AI responses may include mistakes. [1]? [2]? [3]? [4]? [5]? [6]?
On Sunday, May 11, 2025 at 11:21:36 AM EDT, JimLely via groups.io <gaussianmist@...> wrote:
I thought we were talking about the probability of 'other eye' involvement.? This AI report seems to be addressing recurrence in the same eye. (But if I'm misinterpreting, it's because I have NAION.)
In most cases of NAION (Nonarteritic Anterior Ischemic Optic Neuropathy), a "second" attack, meaning a recurrence of the condition in the same eye, is rare. While vision worsens initially, it often stabilizes after two weeks. However, the visual field loss may become less noticeable over time, especially if the other eye is normal. [, , , , , , , ] Here's a more detailed explanation: [, ] - Initial Vision Loss: In NAION, vision typically worsens progressively over about two weeks. [, ]
- Progression and Stabilization: After the initial two-week period, the vision usually stabilizes, meaning it doesn't worsen further. [, ]
- Recurrence: While a second attack in the same eye is not common, it's not impossible. [, , , , , , ]
- Visual Field Loss: The area of visual field loss typically doesn't improve significantly over time. [, ]
- Other Eye: If the other eye is normal, the visual field loss might become less noticeable over time, as the brain adapts, according to the North American Neuro-Ophthalmology Society. [, ]
AI responses may include mistakes. [1]? [2]? [3]? [4]? [5]? [6]? [7]? [8]?
|
Re: 2nd NAION attack -- Google A.I. search results
I thought we were talking about the probability of 'other eye' involvement.? This AI report seems to be addressing recurrence in the same eye. (But if I'm misinterpreting, it's because I have NAION.)
In most cases of NAION (Nonarteritic Anterior Ischemic Optic Neuropathy), a "second" attack, meaning a recurrence of the condition in the same eye, is rare. While vision worsens initially, it often stabilizes after two weeks. However, the visual field loss may become less noticeable over time, especially if the other eye is normal. [, , , , , , , ] Here's a more detailed explanation: [, ] - Initial Vision Loss: In NAION, vision typically worsens progressively over about two weeks. [, ]
- Progression and Stabilization: After the initial two-week period, the vision usually stabilizes, meaning it doesn't worsen further. [, ]
- Recurrence: While a second attack in the same eye is not common, it's not impossible. [, , , , , , ]
- Visual Field Loss: The area of visual field loss typically doesn't improve significantly over time. [, ]
- Other Eye: If the other eye is normal, the visual field loss might become less noticeable over time, as the brain adapts, according to the North American Neuro-Ophthalmology Society. [, ]
AI responses may include mistakes. [1]? [2]? [3]? [4]? [5]? [6]? [7]? [8]?
|
2nd NAION attack -- Google A.I. search results
In most cases of NAION (Nonarteritic Anterior Ischemic Optic Neuropathy), a "second" attack, meaning a recurrence of the condition in the same eye, is rare. While vision worsens initially, it often stabilizes after two weeks. However, the visual field loss may become less noticeable over time, especially if the other eye is normal. [, , , , , , , ] Here's a more detailed explanation: [, ] - Initial Vision Loss: In NAION, vision typically worsens progressively over about two weeks. [, ]
- Progression and Stabilization: After the initial two-week period, the vision usually stabilizes, meaning it doesn't worsen further. [, ]
- Recurrence: While a second attack in the same eye is not common, it's not impossible. [, , , , , , ]
- Visual Field Loss: The area of visual field loss typically doesn't improve significantly over time. [, ]
- Other Eye: If the other eye is normal, the visual field loss might become less noticeable over time, as the brain adapts, according to the North American Neuro-Ophthalmology Society. [, ]
AI responses may include mistakes. [1]? [2]? [3]? [4]? [5]? [6]? [7]? [8]?
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Re: How common is second NAION attack?
The idea is that low blood pressure contributes to attacks and
drugs that lower your blood pressure act most when taken.? Your
blood pressure drops anyway because of sleep and the drugs can add
to that.? So taking them at night increases the risk.?
/11/2025 7:05 AM, Tim Trela via groups.io wrote:
toggle quoted message
Show quoted text
Could you expand on the morning avoidance of heart
related drugs (i.e., blood pressure management) in the morning?
I've not heard of that before.
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
?
?
|
NOTE: a history of NAION: Prof. S.S. Hayreh, MD, PhD, Univ of Iowa Medical .. R.I.P.
"Much of Professor Hayreh¡¯s research legacy has become so engrained in the modern practice of ophthalmology that many are not aware of the full extent of his work ..
"He was the first to distinguish between ischaemic and non-ischaemic central retinal vein occlusions, and to classify ischaemic optic neuropathies as anterior or posterior.?
"He identified nocturnal hypotension as a risk factor for both non-arteritic anterior ischaemic optic neuropathy and glaucoma.?
"He made significant contributions to the vasogenic theory of glaucoma, and his work on the pathogenesis of papilloedema led to the reintroduction of optic nerve sheath fenestration as a treatment for this condition."
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ReeRee
GaryGBrown