On 12/14/2022 9:47 PM Amy + Adam via groups.io <alf.acs@...> wrote:

I was 57, now 62. ?I would not say “optimum” age exactly—I’d rather get it at age 135, if I had a choice. ??

From: [email protected] <[email protected]> On Behalf Of Chiarina Blake
Sent: Wednesday, December 14, 2022 7:41 PM
To: [email protected]
Subject: Re: [NAION] I was going to ask Russ, is NAION truly permanent? So Jo hope for any improvement? My own doctor told me that there would be no improvement but it won’t get worse. Surely there is hope?

Hi there.? I was 59 when I got hit with this condition.? I got it because of a fall in blood pressure due to sleep apena.??

On Wed, Dec 14, 2022 at 6:42 PM Paul Stratford <p.stratford@...> wrote:

Could I just ask our ages on here. There seems to be some research that the optimum age for NIAION is 57 and if you have had one eye affected there’s a 30-40% chance that within 2 years there’s likely to be a attack in the other eye. But after that there’s not much evidence of further attacks

On 14 Dec 2022, at 07:06, Chiarina Blake <jc.blake2@...> wrote:

Thanks Marc. I feel sad about it all. My problem is that my NAION happened in my only good functioning eye.?

On Wed, 14 Dec 2022 at 2:36 pm, Marc Gold <marcgold@...> wrote:

No hope. No cases of spontaneous remission.?

On the other hand I have lived with NAION for 11 years and after the first month of being fearful, it has hardly affected my life since then. The most serious?side effect for me has been that it has been slightly more difficult to light a roach (joint).

M.

?

?

?

?

They provide 0.0 scientific proof of their work.

Pass.

On Tuesday, December 13, 2022 at 10:32:22 PM EST, Joe Tatarek <joetatarek@...> wrote:

Has anyone researched federov. I read he is treating it in Germany. Anyone have any insight??

On Tue, Dec 13, 2022 at 10:29 PM Chiarina Blake <jc.blake2@...> wrote:

I was going to ask Russ, is NAION truly permanent? So Jo hope for any improvement? My own doctor told me that there would be no improvement but it won’t get worse. Surely there is hope??

On Wed, 14 Dec 2022 at 2:18 pm, Russ Poter via <russpoter=[email protected]> wrote:

Many of us have learned .. a loss of vision will IMMEDIATELY cause a CAT or MRI scan .. as vision loss is a sign of stroke.??

? ? ?Very urgent, very important.? You will never see, a medical office move as fast, than with vision loss.

There is a related vision loss issue .. optical neuritis .. optical nerve becomes infected .. ~70% of cases are permanent.? With NAION, 100% of cases are permanent.

On Tuesday, December 13, 2022 at 08:59:11 AM EST, Joe Tatarek <joetatarek@...> wrote:

Thanks Bobbie, I appreciate all the feedback.? I went to presbyterian hospital.? They were not very helpful on follow and/or treatment.? I had to question about covid and the vaccine when I seen so many people having eye?problems when I was there.? I would not think it is typical.? Thank you for sharing.

On Tue, Dec 13, 2022 at 6:57 AM Bobbie James <rrjames61@...> wrote:

There are many studies on the correlation between the vaccine and NAION.? But, what my NO told me, and it makes sense to me, is that because so many of us were getting the vaccine at the time it is hard to make the causal connection between the two.? That is, when talking about such a large population (of people getting the vaccine), there are a certain number of people who are going to get NAION anyway, it's hard for science to say, yep, the vaccine is what caused the NAION.? That is my very unscientific understanding of what she told me...??

That being said, I got the vaccine and the first booster before I read the articles about the possible correlation.? Since then I did not get the second booster.? I'm not advocating for that, I'm just saying with one eye already impacted by NAION, I don't want to take the chance that the day after I get the booster I wake up and can't see out of both eyes.? I'm in a position, however, that allows me to work at home and generally stay away from people.? I'm also pretty comfortable still wearing my mask everywhere I go.

On Mon, Dec 12, 2022 at 8:38 PM Joe Tatarek <Joetatarek@...> wrote:

Does anyone know if there are any studies that correlate Covid 19 or the vaccine to this condition? When I was sent to the hospital there was an entire waiting room of people who were being seen for swollen optic nerve. Not sure how many were diagnosed as NAION but regardless seemed very odd.?

On Mon, Dec 12, 2022 at 8:29 PM Joe Tatarek via <Joetatarek=[email protected]> wrote:

Thank you so much. This was very insightful. I been to one of the best hospitals in the states and they really gave me no direction.?

On Mon, Dec 12, 2022 at 8:23 PM Amy + Adam via <alf.acs=[email protected]> wrote:

Joe,

-Yes, gets easier, but takes time.

-Many people (including myself) are just as bothered by the subsequent anxiety. If you have a lot of anxiety please do not hesitate to get it treated.

-Accupuncture can be good for anxiety, and headaches caused by the visual change and eye strain, but it can’t do anything for the eye itself.

-NAION has an association with hypertension and possibly with sleep apnea. Get checked for both if you can. Managing cardiovascular health is always important (heart attacks and strokes are much more common than NAION, so its worth doing just for that).? Stay hydrated especially if you exercise.

-If you are still within three weeks of onset it is possible that your vision will continue to change a bit. Keep seeing your neuro-opthalmologist especially if you have any further changes, or if you get severe headaches.

-In addition to the effects on your affected eye (dead retinal ganglion/optic nerve cells), you may have other issues for a while with your eyes working together, or with your brain making sense of the new input. Here are some suggestions that made a difference for me:

?

• If you wear glasses try to find a low vision optometrist. This is not a substitute for a neuro-opthalmologist, but they will have more insight into what works with vision correction, and more patience for trying different things. ?
• I got yellow/orange tinted sunglasses and used them for the first year. Somehow the enhanced contrast helped relax my eyes, or maybe it was just having a bit less light.
• I do have a large curved monitor, and I love it. My wife hates it though.
• I have to work hard (exercise) to maintain my body awareness on my right (bad) side, or I get clumsy. Anything that uses your whole body. Exercise nearly always improves my outlook.

?

There are some things we are not supposed to do, but the evidence about their association with NAION is equivocal at best:

?

• Avoid certain medications. Your doc will tell you which ones, but among them are PDE5 inhibitors (eg Viagra).
• Avoid high altitudes.
• If you have surgery tell the anesthesiologist about the NAION. You don’t want to have your BP go too low. ?
• Be careful with strenuous exercise until the swelling of your optic nerve head has resolved. This is usually ~6 weeks—your doc will tell you when the swelling has resolved. If you are a weightlifter you may really need to back off on intensity and weight. The point is to avoid suddenly raising your intraocular pressure or getting really dehydrated. Ask your doc about this.

?

?

Good luck,

Adam

?

?

From: [email protected] <[email protected]> On Behalf Of Joe Tatarek
Sent: Monday, December 12, 2022 8:08 AM
To: [email protected]
Subject: Re: [NAION] Something that may (or may not) help -- a "curved" computer monitor

?

Thank you and Sorry to hear that.

?

?

?

On Mon, Dec 12, 2022 at 7:59 AM Paul Stratford <p.stratford@...> wrote:

Yes it does get easier. It will probably take up to 12 montbs but the brain does adapt. As for treatments and medication I personally would just try to carry on as normal and not to look for solutions for it can be an obsession. I have had mine in both eyes for 7 years and yes it Anne annoying but don’t let it rule you. You control it. Good luck

On 12 Dec 2022, at 10:23, Joe Tatarek <Joetatarek@...> wrote:

?

I am new to this. Just had this happen 3 weeks ago. I have a few questions.?

?

1.? Does it get easier to deal and cope with. I find myself exhausted at the end of the day because of the amount of focus I have to put into life. If that makes sense? ?

2.? Has anyone tried and has had positive results with acupuncture.?

3.? Any ideas on what to do to promote health in good eye. I am doing a lot of cardiovascular related exercise etc.?

4.? Does anyone know of any exercises or therapy that can be done with NAION to help.?

?

Thank you

?

On Mon, Dec 12, 2022 at 2:11 AM Chiarina Blake <jc.blake2@...> wrote:

Thank you. I am getting a Lap Top. Do you have any suggestions for a machine that suits us?better?

?

On Mon, 12 Dec 2022 at 3:42 am, Russ Poter via <russpoter=[email protected]> wrote:

I just tried it .. so far, less tiring on NAION eye .. something to do with curvature, eye has to "strain" less

?

?

It was $129, when I bought it.

?

It helps sometimes .. sometimes not. Depends on how much NAION damage, lighting, positioning ..

?

It is designed for "gamers" .. others find helpful? My $0.02

?

Links in the message (1)

Robot or human?

In 1999 I had my first NAION attack, although at the time it was misdiagnosed as optic neuritis.? It was 10 years later I had an attack in the other eye, they then figured the first attack was actually NAION.? After the second attack, I was concerned I would lose my central vision.? I went to the hospital for 3 days of steroid infusions and then I tried an experimental eye injections of Aviston (a cancer treatment) they said might help.? At that point the swelling went down, but damage to my eyes were already done.? However, did the treatments prevent it from getting worse?? I'll never know, but I think you have to try.? I always make sure doctor's are aware of my NAION.? You can't ever let your guard down.? I'm always concerned another attack and I will lose my central vision.

On Wednesday, December 14, 2022 at 12:58:18 PM EST, Graham Blackburn via groups.io <grahamblackburn@...> wrote:

German research. SCAM


Best Regards Graham.?

On Wednesday, December 14, 2022, 6:01 pm, Russ Poter via groups.io <russpoter@...> wrote:

They provide 0.0 scientific proof of their work.

Pass.

On Tuesday, December 13, 2022 at 10:32:22 PM EST, Joe Tatarek <joetatarek@...> wrote:

Has anyone researched federov. I read he is treating it in Germany. Anyone have any insight??

On Tue, Dec 13, 2022 at 10:29 PM Chiarina Blake <jc.blake2@...> wrote:

I was going to ask Russ, is NAION truly permanent? So Jo hope for any improvement? My own doctor told me that there would be no improvement but it won’t get worse. Surely there is hope??

On Wed, 14 Dec 2022 at 2:18 pm, Russ Poter via <russpoter=[email protected]> wrote:

Many of us have learned .. a loss of vision will IMMEDIATELY cause a CAT or MRI scan .. as vision loss is a sign of stroke.??

? ? ?Very urgent, very important.? You will never see, a medical office move as fast, than with vision loss.

There is a related vision loss issue .. optical neuritis .. optical nerve becomes infected .. ~70% of cases are permanent.? With NAION, 100% of cases are permanent.

On Tuesday, December 13, 2022 at 08:59:11 AM EST, Joe Tatarek <joetatarek@...> wrote:

Thanks Bobbie, I appreciate all the feedback.? I went to presbyterian hospital.? They were not very helpful on follow and/or treatment.? I had to question about covid and the vaccine when I seen so many people having eye?problems when I was there.? I would not think it is typical.? Thank you for sharing.

On Tue, Dec 13, 2022 at 6:57 AM Bobbie James <rrjames61@...> wrote:

There are many studies on the correlation between the vaccine and NAION.? But, what my NO told me, and it makes sense to me, is that because so many of us were getting the vaccine at the time it is hard to make the causal connection between the two.? That is, when talking about such a large population (of people getting the vaccine), there are a certain number of people who are going to get NAION anyway, it's hard for science to say, yep, the vaccine is what caused the NAION.? That is my very unscientific understanding of what she told me...??

That being said, I got the vaccine and the first booster before I read the articles about the possible correlation.? Since then I did not get the second booster.? I'm not advocating for that, I'm just saying with one eye already impacted by NAION, I don't want to take the chance that the day after I get the booster I wake up and can't see out of both eyes.? I'm in a position, however, that allows me to work at home and generally stay away from people.? I'm also pretty comfortable still wearing my mask everywhere I go.

On Mon, Dec 12, 2022 at 8:38 PM Joe Tatarek <Joetatarek@...> wrote:

Does anyone know if there are any studies that correlate Covid 19 or the vaccine to this condition? When I was sent to the hospital there was an entire waiting room of people who were being seen for swollen optic nerve. Not sure how many were diagnosed as NAION but regardless seemed very odd.?

On Mon, Dec 12, 2022 at 8:29 PM Joe Tatarek via <Joetatarek=[email protected]> wrote:

Thank you so much. This was very insightful. I been to one of the best hospitals in the states and they really gave me no direction.?

On Mon, Dec 12, 2022 at 8:23 PM Amy + Adam via <alf.acs=[email protected]> wrote:

Joe,

-Yes, gets easier, but takes time.

-Many people (including myself) are just as bothered by the subsequent anxiety. If you have a lot of anxiety please do not hesitate to get it treated.

-Accupuncture can be good for anxiety, and headaches caused by the visual change and eye strain, but it can’t do anything for the eye itself.

-NAION has an association with hypertension and possibly with sleep apnea. Get checked for both if you can. Managing cardiovascular health is always important (heart attacks and strokes are much more common than NAION, so its worth doing just for that).? Stay hydrated especially if you exercise.

-If you are still within three weeks of onset it is possible that your vision will continue to change a bit. Keep seeing your neuro-opthalmologist especially if you have any further changes, or if you get severe headaches.

-In addition to the effects on your affected eye (dead retinal ganglion/optic nerve cells), you may have other issues for a while with your eyes working together, or with your brain making sense of the new input. Here are some suggestions that made a difference for me:

?

• If you wear glasses try to find a low vision optometrist. This is not a substitute for a neuro-opthalmologist, but they will have more insight into what works with vision correction, and more patience for trying different things. ?
• I got yellow/orange tinted sunglasses and used them for the first year. Somehow the enhanced contrast helped relax my eyes, or maybe it was just having a bit less light.
• I do have a large curved monitor, and I love it. My wife hates it though.
• I have to work hard (exercise) to maintain my body awareness on my right (bad) side, or I get clumsy. Anything that uses your whole body. Exercise nearly always improves my outlook.

?

There are some things we are not supposed to do, but the evidence about their association with NAION is equivocal at best:

?

• Avoid certain medications. Your doc will tell you which ones, but among them are PDE5 inhibitors (eg Viagra).
• Avoid high altitudes.
• If you have surgery tell the anesthesiologist about the NAION. You don’t want to have your BP go too low. ?
• Be careful with strenuous exercise until the swelling of your optic nerve head has resolved. This is usually ~6 weeks—your doc will tell you when the swelling has resolved. If you are a weightlifter you may really need to back off on intensity and weight. The point is to avoid suddenly raising your intraocular pressure or getting really dehydrated. Ask your doc about this.

?

?

Good luck,

Adam

?

?

From: [email protected] <[email protected]> On Behalf Of Joe Tatarek
Sent: Monday, December 12, 2022 8:08 AM
To: [email protected]
Subject: Re: [NAION] Something that may (or may not) help -- a "curved" computer monitor

?

Thank you and Sorry to hear that.

?

?

?

On Mon, Dec 12, 2022 at 7:59 AM Paul Stratford <p.stratford@...> wrote:

Yes it does get easier. It will probably take up to 12 montbs but the brain does adapt. As for treatments and medication I personally would just try to carry on as normal and not to look for solutions for it can be an obsession. I have had mine in both eyes for 7 years and yes it Anne annoying but don’t let it rule you. You control it. Good luck

On 12 Dec 2022, at 10:23, Joe Tatarek <Joetatarek@...> wrote:

?

I am new to this. Just had this happen 3 weeks ago. I have a few questions.?

?

1.? Does it get easier to deal and cope with. I find myself exhausted at the end of the day because of the amount of focus I have to put into life. If that makes sense? ?

2.? Has anyone tried and has had positive results with acupuncture.?

3.? Any ideas on what to do to promote health in good eye. I am doing a lot of cardiovascular related exercise etc.?

4.? Does anyone know of any exercises or therapy that can be done with NAION to help.?

?

Thank you

?

On Mon, Dec 12, 2022 at 2:11 AM Chiarina Blake <jc.blake2@...> wrote:

Thank you. I am getting a Lap Top. Do you have any suggestions for a machine that suits us?better?

?

On Mon, 12 Dec 2022 at 3:42 am, Russ Poter via <russpoter=[email protected]> wrote:

I just tried it .. so far, less tiring on NAION eye .. something to do with curvature, eye has to "strain" less

?

?

It was $129, when I bought it.

?

It helps sometimes .. sometimes not. Depends on how much NAION damage, lighting, positioning ..

?

It is designed for "gamers" .. others find helpful? My $0.02

?

Links in the message (1)

Robot or human?

On Wednesday, December 14, 2022, 6:01 pm, Russ Poter via groups.io <russpoter@...> wrote:

They provide 0.0 scientific proof of their work.

Pass.

On Tuesday, December 13, 2022 at 10:32:22 PM EST, Joe Tatarek <joetatarek@...> wrote:

Has anyone researched federov. I read he is treating it in Germany. Anyone have any insight??

On Tue, Dec 13, 2022 at 10:29 PM Chiarina Blake <jc.blake2@...> wrote:

I was going to ask Russ, is NAION truly permanent? So Jo hope for any improvement? My own doctor told me that there would be no improvement but it won’t get worse. Surely there is hope??

On Wed, 14 Dec 2022 at 2:18 pm, Russ Poter via <russpoter=[email protected]> wrote:

Many of us have learned .. a loss of vision will IMMEDIATELY cause a CAT or MRI scan .. as vision loss is a sign of stroke.??

? ? ?Very urgent, very important.? You will never see, a medical office move as fast, than with vision loss.

There is a related vision loss issue .. optical neuritis .. optical nerve becomes infected .. ~70% of cases are permanent.? With NAION, 100% of cases are permanent.

On Tuesday, December 13, 2022 at 08:59:11 AM EST, Joe Tatarek <joetatarek@...> wrote:

Thanks Bobbie, I appreciate all the feedback.? I went to presbyterian hospital.? They were not very helpful on follow and/or treatment.? I had to question about covid and the vaccine when I seen so many people having eye?problems when I was there.? I would not think it is typical.? Thank you for sharing.

On Tue, Dec 13, 2022 at 6:57 AM Bobbie James <rrjames61@...> wrote:

There are many studies on the correlation between the vaccine and NAION.? But, what my NO told me, and it makes sense to me, is that because so many of us were getting the vaccine at the time it is hard to make the causal connection between the two.? That is, when talking about such a large population (of people getting the vaccine), there are a certain number of people who are going to get NAION anyway, it's hard for science to say, yep, the vaccine is what caused the NAION.? That is my very unscientific understanding of what she told me...??

That being said, I got the vaccine and the first booster before I read the articles about the possible correlation.? Since then I did not get the second booster.? I'm not advocating for that, I'm just saying with one eye already impacted by NAION, I don't want to take the chance that the day after I get the booster I wake up and can't see out of both eyes.? I'm in a position, however, that allows me to work at home and generally stay away from people.? I'm also pretty comfortable still wearing my mask everywhere I go.

On Mon, Dec 12, 2022 at 8:38 PM Joe Tatarek <Joetatarek@...> wrote:

Does anyone know if there are any studies that correlate Covid 19 or the vaccine to this condition? When I was sent to the hospital there was an entire waiting room of people who were being seen for swollen optic nerve. Not sure how many were diagnosed as NAION but regardless seemed very odd.?

On Mon, Dec 12, 2022 at 8:29 PM Joe Tatarek via <Joetatarek=[email protected]> wrote:

Thank you so much. This was very insightful. I been to one of the best hospitals in the states and they really gave me no direction.?

On Mon, Dec 12, 2022 at 8:23 PM Amy + Adam via <alf.acs=[email protected]> wrote:

Joe,

-Yes, gets easier, but takes time.

-Many people (including myself) are just as bothered by the subsequent anxiety. If you have a lot of anxiety please do not hesitate to get it treated.

-Accupuncture can be good for anxiety, and headaches caused by the visual change and eye strain, but it can’t do anything for the eye itself.

-NAION has an association with hypertension and possibly with sleep apnea. Get checked for both if you can. Managing cardiovascular health is always important (heart attacks and strokes are much more common than NAION, so its worth doing just for that).? Stay hydrated especially if you exercise.

-If you are still within three weeks of onset it is possible that your vision will continue to change a bit. Keep seeing your neuro-opthalmologist especially if you have any further changes, or if you get severe headaches.

-In addition to the effects on your affected eye (dead retinal ganglion/optic nerve cells), you may have other issues for a while with your eyes working together, or with your brain making sense of the new input. Here are some suggestions that made a difference for me:

?

• If you wear glasses try to find a low vision optometrist. This is not a substitute for a neuro-opthalmologist, but they will have more insight into what works with vision correction, and more patience for trying different things. ?
• I got yellow/orange tinted sunglasses and used them for the first year. Somehow the enhanced contrast helped relax my eyes, or maybe it was just having a bit less light.
• I do have a large curved monitor, and I love it. My wife hates it though.
• I have to work hard (exercise) to maintain my body awareness on my right (bad) side, or I get clumsy. Anything that uses your whole body. Exercise nearly always improves my outlook.

?

There are some things we are not supposed to do, but the evidence about their association with NAION is equivocal at best:

?

• Avoid certain medications. Your doc will tell you which ones, but among them are PDE5 inhibitors (eg Viagra).
• Avoid high altitudes.
• If you have surgery tell the anesthesiologist about the NAION. You don’t want to have your BP go too low. ?
• Be careful with strenuous exercise until the swelling of your optic nerve head has resolved. This is usually ~6 weeks—your doc will tell you when the swelling has resolved. If you are a weightlifter you may really need to back off on intensity and weight. The point is to avoid suddenly raising your intraocular pressure or getting really dehydrated. Ask your doc about this.

?

?

Good luck,

Adam

?

?

From: [email protected] <[email protected]> On Behalf Of Joe Tatarek
Sent: Monday, December 12, 2022 8:08 AM
To: [email protected]
Subject: Re: [NAION] Something that may (or may not) help -- a "curved" computer monitor

?

Thank you and Sorry to hear that.

?

?

?

On Mon, Dec 12, 2022 at 7:59 AM Paul Stratford <p.stratford@...> wrote:

Yes it does get easier. It will probably take up to 12 montbs but the brain does adapt. As for treatments and medication I personally would just try to carry on as normal and not to look for solutions for it can be an obsession. I have had mine in both eyes for 7 years and yes it Anne annoying but don’t let it rule you. You control it. Good luck

On 12 Dec 2022, at 10:23, Joe Tatarek <Joetatarek@...> wrote:

?

I am new to this. Just had this happen 3 weeks ago. I have a few questions.?

?

1.? Does it get easier to deal and cope with. I find myself exhausted at the end of the day because of the amount of focus I have to put into life. If that makes sense? ?

2.? Has anyone tried and has had positive results with acupuncture.?

3.? Any ideas on what to do to promote health in good eye. I am doing a lot of cardiovascular related exercise etc.?

4.? Does anyone know of any exercises or therapy that can be done with NAION to help.?

?

Thank you

?

On Mon, Dec 12, 2022 at 2:11 AM Chiarina Blake <jc.blake2@...> wrote:

Thank you. I am getting a Lap Top. Do you have any suggestions for a machine that suits us?better?

?

On Mon, 12 Dec 2022 at 3:42 am, Russ Poter via <russpoter=[email protected]> wrote:

I just tried it .. so far, less tiring on NAION eye .. something to do with curvature, eye has to "strain" less

?

?

It was $129, when I bought it.

?

It helps sometimes .. sometimes not. Depends on how much NAION damage, lighting, positioning ..

?

It is designed for "gamers" .. others find helpful? My $0.02

?

Links in the message (1)

Robot or human?

On Wednesday, December 14, 2022, 6:01 pm, Russ Poter via groups.io <russpoter@...> wrote:

They provide 0.0 scientific proof of their work.

Pass.

On Tuesday, December 13, 2022 at 10:32:22 PM EST, Joe Tatarek <joetatarek@...> wrote:

Has anyone researched federov. I read he is treating it in Germany. Anyone have any insight??

On Tue, Dec 13, 2022 at 10:29 PM Chiarina Blake <jc.blake2@...> wrote:

I was going to ask Russ, is NAION truly permanent? So Jo hope for any improvement? My own doctor told me that there would be no improvement but it won’t get worse. Surely there is hope??

On Wed, 14 Dec 2022 at 2:18 pm, Russ Poter via <russpoter=[email protected]> wrote:

Many of us have learned .. a loss of vision will IMMEDIATELY cause a CAT or MRI scan .. as vision loss is a sign of stroke.??

? ? ?Very urgent, very important.? You will never see, a medical office move as fast, than with vision loss.

There is a related vision loss issue .. optical neuritis .. optical nerve becomes infected .. ~70% of cases are permanent.? With NAION, 100% of cases are permanent.

On Tuesday, December 13, 2022 at 08:59:11 AM EST, Joe Tatarek <joetatarek@...> wrote:

Thanks Bobbie, I appreciate all the feedback.? I went to presbyterian hospital.? They were not very helpful on follow and/or treatment.? I had to question about covid and the vaccine when I seen so many people having eye?problems when I was there.? I would not think it is typical.? Thank you for sharing.

On Tue, Dec 13, 2022 at 6:57 AM Bobbie James <rrjames61@...> wrote:

There are many studies on the correlation between the vaccine and NAION.? But, what my NO told me, and it makes sense to me, is that because so many of us were getting the vaccine at the time it is hard to make the causal connection between the two.? That is, when talking about such a large population (of people getting the vaccine), there are a certain number of people who are going to get NAION anyway, it's hard for science to say, yep, the vaccine is what caused the NAION.? That is my very unscientific understanding of what she told me...??

That being said, I got the vaccine and the first booster before I read the articles about the possible correlation.? Since then I did not get the second booster.? I'm not advocating for that, I'm just saying with one eye already impacted by NAION, I don't want to take the chance that the day after I get the booster I wake up and can't see out of both eyes.? I'm in a position, however, that allows me to work at home and generally stay away from people.? I'm also pretty comfortable still wearing my mask everywhere I go.

On Mon, Dec 12, 2022 at 8:38 PM Joe Tatarek <Joetatarek@...> wrote:

Does anyone know if there are any studies that correlate Covid 19 or the vaccine to this condition? When I was sent to the hospital there was an entire waiting room of people who were being seen for swollen optic nerve. Not sure how many were diagnosed as NAION but regardless seemed very odd.?

On Mon, Dec 12, 2022 at 8:29 PM Joe Tatarek via <Joetatarek=[email protected]> wrote:

Thank you so much. This was very insightful. I been to one of the best hospitals in the states and they really gave me no direction.?

On Mon, Dec 12, 2022 at 8:23 PM Amy + Adam via <alf.acs=[email protected]> wrote:

Joe,

-Yes, gets easier, but takes time.

-Many people (including myself) are just as bothered by the subsequent anxiety. If you have a lot of anxiety please do not hesitate to get it treated.

-Accupuncture can be good for anxiety, and headaches caused by the visual change and eye strain, but it can’t do anything for the eye itself.

-NAION has an association with hypertension and possibly with sleep apnea. Get checked for both if you can. Managing cardiovascular health is always important (heart attacks and strokes are much more common than NAION, so its worth doing just for that).? Stay hydrated especially if you exercise.

-If you are still within three weeks of onset it is possible that your vision will continue to change a bit. Keep seeing your neuro-opthalmologist especially if you have any further changes, or if you get severe headaches.

-In addition to the effects on your affected eye (dead retinal ganglion/optic nerve cells), you may have other issues for a while with your eyes working together, or with your brain making sense of the new input. Here are some suggestions that made a difference for me:

?

• If you wear glasses try to find a low vision optometrist. This is not a substitute for a neuro-opthalmologist, but they will have more insight into what works with vision correction, and more patience for trying different things. ?
• I got yellow/orange tinted sunglasses and used them for the first year. Somehow the enhanced contrast helped relax my eyes, or maybe it was just having a bit less light.
• I do have a large curved monitor, and I love it. My wife hates it though.
• I have to work hard (exercise) to maintain my body awareness on my right (bad) side, or I get clumsy. Anything that uses your whole body. Exercise nearly always improves my outlook.

?

There are some things we are not supposed to do, but the evidence about their association with NAION is equivocal at best:

?

• Avoid certain medications. Your doc will tell you which ones, but among them are PDE5 inhibitors (eg Viagra).
• Avoid high altitudes.
• If you have surgery tell the anesthesiologist about the NAION. You don’t want to have your BP go too low. ?
• Be careful with strenuous exercise until the swelling of your optic nerve head has resolved. This is usually ~6 weeks—your doc will tell you when the swelling has resolved. If you are a weightlifter you may really need to back off on intensity and weight. The point is to avoid suddenly raising your intraocular pressure or getting really dehydrated. Ask your doc about this.

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Good luck,

Adam

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From: [email protected] <[email protected]> On Behalf Of Joe Tatarek
Sent: Monday, December 12, 2022 8:08 AM
To: [email protected]
Subject: Re: [NAION] Something that may (or may not) help -- a "curved" computer monitor

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Thank you and Sorry to hear that.

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On Mon, Dec 12, 2022 at 7:59 AM Paul Stratford <p.stratford@...> wrote:

Yes it does get easier. It will probably take up to 12 montbs but the brain does adapt. As for treatments and medication I personally would just try to carry on as normal and not to look for solutions for it can be an obsession. I have had mine in both eyes for 7 years and yes it Anne annoying but don’t let it rule you. You control it. Good luck

On 12 Dec 2022, at 10:23, Joe Tatarek <Joetatarek@...> wrote:

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I am new to this. Just had this happen 3 weeks ago. I have a few questions.?

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1.? Does it get easier to deal and cope with. I find myself exhausted at the end of the day because of the amount of focus I have to put into life. If that makes sense? ?

2.? Has anyone tried and has had positive results with acupuncture.?

3.? Any ideas on what to do to promote health in good eye. I am doing a lot of cardiovascular related exercise etc.?

4.? Does anyone know of any exercises or therapy that can be done with NAION to help.?

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Thank you

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On Mon, Dec 12, 2022 at 2:11 AM Chiarina Blake <jc.blake2@...> wrote:

Thank you. I am getting a Lap Top. Do you have any suggestions for a machine that suits us?better?

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On Mon, 12 Dec 2022 at 3:42 am, Russ Poter via <russpoter=[email protected]> wrote:

I just tried it .. so far, less tiring on NAION eye .. something to do with curvature, eye has to "strain" less

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It was $129, when I bought it.

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It helps sometimes .. sometimes not. Depends on how much NAION damage, lighting, positioning ..

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It is designed for "gamers" .. others find helpful? My $0.02

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Links in the message (1)

Robot or human?

On 14 Dec 2022, at 07:06, Chiarina Blake <jc.blake2@...> wrote:

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Thanks Marc. I feel sad about it all. My problem is that my NAION happened in my only good functioning eye.?

On Wed, 14 Dec 2022 at 2:36 pm, Marc Gold <marcgold@...> wrote:

No hope. No cases of spontaneous remission.?

On the other hand I have lived with NAION for 11 years and after the first month of being fearful, it has hardly affected my life since then. The most serious?side effect for me has been that it has been slightly more difficult to light a roach (joint).

M.