It is not reassuring that on his web page he identifies “AMD” as “Advanced Macular Degeneration”. It actually stands for “Age -related Macular Degeneration”. ? ? ?
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From: [email protected] < [email protected]> On Behalf Of Louie via groups.io Sent: Wednesday, December 28, 2022 4:16 PM To: [email protected]Subject: Re: [NAION] NAION Treatment ? There is no treatment for NAION, someone is just st trying to make easy money. I had my attack in my left eye in 2005, if there was a treatment, we would all be in line be there. Sorry but most of us with only one effected eye, have learned to live with it and take all of the possible precautions for the good eye. Lou, Myrtle Beach
On Wednesday, December 28, 2022, 3:59 PM, Bobbie James <rrjames61@...> wrote: Never heard of him. No treatment for NAION exists.? ? I have been referred from UPMC to Andy Rosenfarb, LAC, ND for treatment in?New Jersey.? He uses both acupuncture and laser treatment.? There?are some YouTube videos about his practice and patient experience.? I am inquiring if anyone has used him or has heard of his services?? I live in the Pittsburgh area and would have to travel to NJ to go through the procedure(s) and it is costly.? Looking for any insight...
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There is no treatment for NAION, someone is just st trying to make easy money. I had my attack in my left eye in 2005, if there was a treatment, we would all be in line be there. Sorry but most of us with only one effected eye, have learned to live with it and take all of the possible precautions for the good eye.
On Wednesday, December 28, 2022, 3:59 PM, Bobbie James <rrjames61@...> wrote: Never heard of him. No treatment for NAION exists.? I have been referred from UPMC to Andy Rosenfarb, LAC, ND for treatment in?New Jersey.? He uses both acupuncture and laser treatment.? There?are some YouTube videos about his practice and patient experience.? I am inquiring if anyone has used him or has heard of his services?? I live in the Pittsburgh area and would have to travel to NJ to go through the procedure(s) and it is costly.? Looking for any insight...
Thanks,
-Joe
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Never heard of him. No treatment for NAION exists.?
I have been referred from UPMC to Andy Rosenfarb, LAC, ND for treatment in?New Jersey.? He uses both acupuncture and laser treatment.? There?are some YouTube videos about his practice and patient experience.? I am inquiring if anyone has used him or has heard of his services?? I live in the Pittsburgh area and would have to travel to NJ to go through the procedure(s) and it is costly.? Looking for any insight...
Thanks,
-Joe
|
I have been referred from UPMC to Andy Rosenfarb, LAC, ND for treatment in?New Jersey.? He uses both acupuncture and laser treatment.? There?are some YouTube videos about his practice and patient experience.? I am inquiring if anyone has used him or has heard of his services?? I live in the Pittsburgh area and would have to travel to NJ to go through the procedure(s) and it is costly.? Looking for any insight...
Thanks,
-Joe
|
FOR LOW-VISION PERSONS .. no-cost smart-phone app from Harvard Medical School
I use this, if getting too many spots .. pretty helpful, actually ..
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Good article on computer monitors
Per previous -- I've tried extra-big, now trying a curved monitor.? What is best for you, that depends on many factors (lighting, desk size, severity of NAION) .. try them all.
The curved monitor seems to be working .. I have NAION in left eye, only 60% function .. my eyes appear to be "wandering" less ..
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Re: Blood pressure medication
Hi Martin,
Take your BP medicines in the morning.
Or,
If you have to take them twice daily, make sure that the evening dose is taken at least 6 hours before you sleep.
Avoid medicines for insomnia, if any.
On Friday, December 16, 2022, 7:05 AM, Amy + Adam via groups.io <alf.acs@...> wrote: And your cardiologist. And if you can have your NO and cardiologist talk to each other, even better. ?Heart issues can be more serious than NAION. ? ? ? ? Discuss with your N.O., STAT On Thursday, December 15, 2022 at 04:26:13 PM EST, GaryGBrown via groups.io <bhmvol@...> wrote: The BP meds should be taken in the morning after you wake. ?Theoretically, low BP at night while asleep can lead to NAION especially if you have sleep apnea.?
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Re: Blood pressure medication
And your cardiologist. And if you can have your NO and cardiologist talk to each other, even better. ?Heart issues can be more serious than NAION. ? ? ?
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From: [email protected] < [email protected]> On Behalf Of Russ Poter via groups.io Sent: Thursday, December 15, 2022 4:55 PM To: [email protected]Subject: Re: [NAION] Blood pressure medication ? Discuss with your N.O., STAT On Thursday, December 15, 2022 at 04:26:13 PM EST, GaryGBrown via groups.io <bhmvol@...> wrote: The BP meds should be taken in the morning after you wake. ?Theoretically, low BP at night while asleep can lead to NAION especially if you have sleep apnea.?
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Re: Blood pressure medication
Discuss with your N.O., STAT
On Thursday, December 15, 2022 at 04:26:13 PM EST, GaryGBrown via groups.io <bhmvol@...> wrote:
The BP meds should be taken in the morning after you wake. ?Theoretically, low BP at night while asleep can lead to NAION especially if you have sleep apnea.?
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Re: Blood pressure medication
The BP meds should be taken in the morning after you wake. ?Theoretically, low BP at night while asleep can lead to NAION especially if you have sleep apnea.?
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Re: Blood pressure medication
Unfortunately? drop in my blood pressure convert my old naion os by 20/20 vision to unilateral PION.? It's horrible?
I’m just wondering if anyone can advise me. I’ve been prescribed blood pressure tablets for a leaky heart valve. However I’m very apprehensive about taking them as I know a drop in blood pressure is not good for NAION. I was diagnosed in August with NAION in my left eye.
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Blood pressure medication
?I’m just wondering if anyone can advise me. I’ve been prescribed blood pressure tablets for a leaky heart valve. However I’m very apprehensive about taking them as I know a drop in blood pressure is not good for NAION. I was diagnosed in August with NAION in my left eye.
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Cause of Naion and pion are anemia and low blood pressure or vasculitis such as GCA
I’ve not read anything that can definitively pinpoint the actual cause of NAION.? Sure there are some well thought out theories which “may” be accurate.? At my diagnosis, I didn’t have a threat for low blood pressure, my cholesterol was well below guidelines and the sleep study I took soon thereafter showed less than enough incidents per hour to be concerned with (although I am in a CPAP strictly due to NAION and NO suggestion.? In the meantime I do have peripheral neuropathy and had been misdiagnosed with trigeminal neuralgia and had recently had a bout of shingles.? So, at least for me, I’ll respect the theories and go along with them to a degree but I don’t believe they are necessarily settled.? Maybe a permanently dwelling virus is in play here somewhere? ?
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I’ve not read anything that can definitively pinpoint the actual cause of NAION. ?Sure there are some well thought out theories which “may” be accurate. ?At my diagnosis, I didn’t have a threat for low blood pressure, my cholesterol was well below guidelines and the sleep study I took soon thereafter showed less than enough incidents per hour to be concerned with (although I am in a CPAP strictly due to NAION and NO suggestion. ?In the meantime I do have peripheral neuropathy and had been misdiagnosed with trigeminal neuralgia and had recently had a bout of shingles. ?So, at least for me, I’ll respect the theories and go along with them to a degree but I don’t believe they are necessarily settled. ?Maybe a permanently dwelling virus is in play here somewhere? ?
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Re: 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 improve ment but it won’t get worse. Surely there is hope?
I live in Pennsylvania USA
Thank you Diane, where do you live??
-------- Original message --------
Date: 15/12/2022 13:09 (GMT+00:00)
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 improve ment but it won’t get worse. Surely there is hope?
Hi Caroline
Sorry you have the need to be part of this group but happy to meet you.? I have had two NAION one each eye. The first one was a dot that eventually disappeared.? The second was severe and I have loss of most sight in that eye.? My ophthalmologist
immediately put me on steroids for 3 months.? This
Helped me by going from 400/20 to 125/20 in that eye. ?
I just saw the neuro ophthalmologist on Friday last week.? Nothing more can be done. ?
Adjusting is the key
I send prayers for you ?
Hello All
I've recently joined this group, I would love to hear your stories of how Naion affects you and where you live. I belong to a Facebook group which is very good and has a lot of helpful information. Prof Sohan Hayreh has written a lot of papers
on Naion and done a lot of research. His findings are very interesting. He believes if you start a high dose of steroids within 14 days of the onset of Naion it will help stabilise the condition. About me, my name is Caroline,? I've in South Wales? UK and
in 2019 I had my first Naion attack and lost most of my sight in my right eye. Then 6 weeks later I had another attack in my left eye, luckily I can still do most things, but I am unable to drive any longer. My depth perception is poor, my sight feels slightly
out of focus and I feel nauseous if I am in a shop with fluorescent lights. I was told this would eventually improve as my eyes adjusted. But no improvement at the moment. So I am classed? as bi-lateral. I feel grateful for the sight I have! ??
Kind regards?
Caroline
-------- Original message --------
From: Danette Janickovic <Mommyflyz@...>
Date: 15/12/2022 10:42 (GMT+00:00)
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 improve ment but it won’t get worse. Surely there is hope?
I was 49, in 2020. Diagnosed with optic neuritis and while NAION was discussed my doctor thought I was too young for NAION. Guess I fooled him....
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.??
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
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).
--
Enjoy every moment,
Diane
--
Enjoy every moment,
Diane
|
Re: Immunotherapy side effects causing NAION
This is the original academic article --?
It involves only three (3) patients, in an 1,100 bed medical center.
As always, be careful .. and realize, there can be an enormous amout of varibility among humans (e.g., work load, genetics, smoking, heavy drinking)
On Thursday, December 15, 2022 at 12:31:53 AM EST, ScottishDave <scottishdave@...> wrote:
I developed NAION in my left eye after receiving immunotherapy for skin precancers. I wasn't told about the side effects before the treatment. I've been researching the opthalmic side-effects associated with immunology. Here are a few articles.
https://jitc.biomedcentral.com/articles/10.1186/s40425-016-0170-9
https://www.asbestos.com/news/2018/03/27/immunotherapy-drugs-vision-issues/
Has anybody else had immunotherapy which resulted in NAION?
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Yes, well .. given how awful the first NAION attack was .. not very interested in a second one ..
On Thursday, December 15, 2022 at 12:42:16 AM EST, Wuensch, Karl Louis <wuenschk@...> wrote:
????????? The incidence of NAION is so low that the sample size used by Pfizer is inadequate.? Also, they are not a neutral source about side effects of drugs they produce and
profit on.
?
Karl L. Wuensch, Professor and ECU Scholar/Teacher, Dept. of Psychology
East Carolina University, Greenville NC? 27858-4353, USA,?
Voice:? 252-328-9420???? Fax:? 252-328-6283
From: [email protected] < [email protected]> On Behalf Of
GaryGBrown via groups.io
Sent: Wednesday, December 14, 2022 10:57 PM
To: [email protected]
Subject: Re: [NAION] VIAGRA, part II
?
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This email originated from outside ECU.
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?
So my understanding is, according to this article, ED meds are unlikely to trigger NAION. Do you agree? ?Frankly, I don’t believe the limited research that’s been done on NAION is very inconclusive,,
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Re: 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 improve ment but it won’t get worse. Surely there is hope?
Thank you Diane, where do you live??
toggle quoted message
Show quoted text
-------- Original message --------
From: Diane Chermak <CHERMAKDIANE@...>
Date: 15/12/2022 13:09 (GMT+00:00)
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 improve ment but it won’t get worse. Surely there is hope?
Hi Caroline
Sorry you have the need to be part of this group but happy to meet you.? I have had two NAION one each eye. The first one was a dot that eventually disappeared.? The second was severe and I have loss of most sight in that eye.? My ophthalmologist
immediately put me on steroids for 3 months.? This
Helped me by going from 400/20 to 125/20 in that eye. ?
I just saw the neuro ophthalmologist on Friday last week.? Nothing more can be done. ?
Adjusting is the key
I send prayers for you ?
Hello All
I've recently joined this group, I would love to hear your stories of how Naion affects you and where you live. I belong to a Facebook group which is very good and has a lot of helpful information. Prof Sohan Hayreh has written a lot of papers
on Naion and done a lot of research. His findings are very interesting. He believes if you start a high dose of steroids within 14 days of the onset of Naion it will help stabilise the condition. About me, my name is Caroline,? I've in South Wales? UK and
in 2019 I had my first Naion attack and lost most of my sight in my right eye. Then 6 weeks later I had another attack in my left eye, luckily I can still do most things, but I am unable to drive any longer. My depth perception is poor, my sight feels slightly
out of focus and I feel nauseous if I am in a shop with fluorescent lights. I was told this would eventually improve as my eyes adjusted. But no improvement at the moment. So I am classed? as bi-lateral. I feel grateful for the sight I have! ??
Kind regards?
Caroline
-------- Original message --------
From: Danette Janickovic <Mommyflyz@...>
Date: 15/12/2022 10:42 (GMT+00:00)
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 improve ment but it won’t get worse. Surely there is hope?
I was 49, in 2020. Diagnosed with optic neuritis and while NAION was discussed my doctor thought I was too young for NAION. Guess I fooled him....
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.??
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
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).
--
Enjoy every moment,
Diane
|
Re: 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 improve ment but it won’t get worse. Surely there is hope?
Hi Caroline Sorry you have the need to be part of this group but happy to meet you.? I have had two NAION one each eye. The first one was a dot that eventually disappeared.? The second was severe and I have loss of most sight in that eye.? My ophthalmologist immediately put me on steroids for 3 months.? This Helped me by going from 400/20 to 125/20 in that eye. ? I just saw the neuro ophthalmologist on Friday last week.? Nothing more can be done. ?
Adjusting is the key
I send prayers for you ?
Hello All
I've recently joined this group, I would love to hear your stories of how Naion affects you and where you live. I belong to a Facebook group which is very good and has a lot of helpful information. Prof Sohan Hayreh has written a lot of papers
on Naion and done a lot of research. His findings are very interesting. He believes if you start a high dose of steroids within 14 days of the onset of Naion it will help stabilise the condition. About me, my name is Caroline,? I've in South Wales? UK and
in 2019 I had my first Naion attack and lost most of my sight in my right eye. Then 6 weeks later I had another attack in my left eye, luckily I can still do most things, but I am unable to drive any longer. My depth perception is poor, my sight feels slightly
out of focus and I feel nauseous if I am in a shop with fluorescent lights. I was told this would eventually improve as my eyes adjusted. But no improvement at the moment. So I am classed? as bi-lateral. I feel grateful for the sight I have! ??
Kind regards?
Caroline
-------- Original message --------
From: Danette Janickovic <Mommyflyz@...>
Date: 15/12/2022 10:42 (GMT+00:00)
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 improve ment but it won’t get worse. Surely there is hope?
I was 49, in 2020. Diagnosed with optic neuritis and while NAION was discussed my doctor thought I was too young for NAION. Guess I fooled him....
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.??
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
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).
--
Enjoy every moment,
Diane
|
Re: 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 improve ment but it won’t get worse. Surely there is hope?
Hello All
I've recently joined this group, I would love to hear your stories of how Naion affects you and where you live. I belong to a Facebook group which is very good and has a lot of helpful information. Prof Sohan Hayreh has written a lot of papers
on Naion and done a lot of research. His findings are very interesting. He believes if you start a high dose of steroids within 14 days of the onset of Naion it will help stabilise the condition. About me, my name is Caroline,? I've in South Wales? UK and
in 2019 I had my first Naion attack and lost most of my sight in my right eye. Then 6 weeks later I had another attack in my left eye, luckily I can still do most things, but I am unable to drive any longer. My depth perception is poor, my sight feels slightly
out of focus and I feel nauseous if I am in a shop with fluorescent lights. I was told this would eventually improve as my eyes adjusted. But no improvement at the moment. So I am classed? as bi-lateral. I feel grateful for the sight I have! ??
Kind regards?
Caroline
toggle quoted message
Show quoted text
-------- Original message --------
From: Danette Janickovic <Mommyflyz@...>
Date: 15/12/2022 10:42 (GMT+00:00)
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 improve ment but it won’t get worse. Surely there is hope?
I was 49, in 2020. Diagnosed with optic neuritis and while NAION was discussed my doctor thought I was too young for NAION. Guess I fooled him....
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.??
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
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).
|
Louie
GaryGBrown