Re: Hoping for some positive news
Thanks Ann. It's a little comforting to hear that some people have been unilateral for years because I'm only at 7 months and open my good eye first every morning to make sure that my vision is still okay in that eye.?
Sent via the Samsung Galaxy S22 5G, an AT&T 5G smartphone
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-------- Original message --------
From: "Ann Barolak via groups.io" <annolak@...>
Date: 10/2/24 9:21 PM (GMT-05:00)
Subject: Re: [NAION] Hoping for some positive news
I had a different set of stressors, but otherwise the same since the day I had my episode, on my 50th birthday. ?I turn 61 in two weeks, ?with gratitude for my good eye!
Ann in Philly?
On Oct 2, 2024, at 10:23?AM, Deane Williams <pyroartist@...> wrote:
? My wife has NAION in 1 eye, about 6 years ago.? She has the low cup to disc ratio in both eyes but her good eye remains good.
Her episode occurred during a period of stress. We had just lost our delightful dog to kidney disease and she was having tests done to
rule out breast cancer (turned out negative).
On 10/2/2024 7:45 AM, Chuu chan via groups.io wrote:
Any more good and comforting examples of staying unilateral for whatever period of time??
we all need encouraging news. Please
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Re: Hoping for some positive news
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Re: Hoping for some positive news
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On Oct 3, 2024, at 11:21?AM, Ann Barolak via groups.io <annolak@...> wrote:
I had a different set of stressors, but otherwise the same since the day I had my episode, on my 50th birthday. ?I turn 61 in two weeks, ?with gratitude for my good eye! Ann in Philly? On Oct 2, 2024, at 10:23?AM, Deane Williams <pyroartist@...> wrote: ?
My wife has NAION in 1 eye, about 6 years ago.? She has the low cup
to disc ratio in both eyes but her good eye remains good.
Her episode occurred during a period of stress. We had just lost our
delightful dog to kidney disease and she was having tests done to
rule out breast cancer (turned out negative).
On 10/2/2024 7:45 AM, Chuu chan via
groups.io wrote:
Any more good and comforting examples of staying unilateral
for whatever period of time??
we all need encouraging news. Please
|
Re: Hoping for some positive news
I had a different set of stressors, but otherwise the same since the day I had my episode, on my 50th birthday. ?I turn 61 in two weeks, ?with gratitude for my good eye!
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On Oct 2, 2024, at 10:23?AM, Deane Williams <pyroartist@...> wrote: ?
My wife has NAION in 1 eye, about 6 years ago.? She has the low cup
to disc ratio in both eyes but her good eye remains good.
Her episode occurred during a period of stress. We had just lost our
delightful dog to kidney disease and she was having tests done to
rule out breast cancer (turned out negative).
On 10/2/2024 7:45 AM, Chuu chan via
groups.io wrote:
Any more good and comforting examples of staying unilateral
for whatever period of time??
we all need encouraging news. Please
|
Re: ABOUT N.A.I.O.N. AND CATARACTS
This is very interesting info - thank you.
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On 2 Oct 2024, at 17:15, Russ Poter via groups.io <russpoter@...> wrote:
?
ABOUT N.A.I.O.N. AND CATARACTS
Many NAION patients are older. Cataracts are an issue for older persons.
https://en.wikipedia.org/wiki/Cataract.?
Given questions whether cataract surgery (CS) can cause another NAION event, caution about CS is strongly advised. (https://en.wikipedia.org/wiki/Cataract_surgery)
OF CONCERN TODAY .. CS can be delayed .. ONLY SO LONG.
? ? ?That is: the longer a patient waits .. the bigger the issue of INOPERABLE cataracts becomes.?
? ? ?Over time, a cataract will become thicker, to the point, it cannot be removed safely.
A very complex matter.?
? ? ?It is risky, so only the patient can make the final decision. Said patient, being well-informed of benefits and risks involved.
—-
There is much debate, about how NAION patients should respond to their (ultimate) time with cataracts.
Many concerns that cataract surgery —
https://en.wikipedia.org/wiki/Cataract_surgery
? ? ?can trigger another NAION event.
My NAION M.D., a national NAION expert and USAF M.D. for Vietnam POWs who is now retired .. recommended that I wait until “the absolute last minute” to have cataract surgery.?
? ? ?That is, when it causes problems, in daily life.
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ABOUT N.A.I.O.N. AND CATARACTS
ABOUT N.A.I.O.N. AND CATARACTS
Many NAION patients are older. Cataracts are an issue for older persons. https://en.wikipedia.org/wiki/Cataract.?
Given questions whether cataract surgery (CS) can cause another NAION event, caution about CS is strongly advised. (https://en.wikipedia.org/wiki/Cataract_surgery)
OF CONCERN TODAY .. CS can be delayed .. ONLY SO LONG. ? ? ?That is: the longer a patient waits .. the bigger the issue of INOPERABLE cataracts becomes.? ? ? ?Over time, a cataract will become thicker, to the point, it cannot be removed safely.
A very complex matter.? ? ? ?It is risky, so only the patient can make the final decision. Said patient, being well-informed of benefits and risks involved.
—-
There is much debate, about how NAION patients should respond to their (ultimate) time with cataracts.
Many concerns that cataract surgery — https://en.wikipedia.org/wiki/Cataract_surgery ? ? ?can trigger another NAION event.
My NAION M.D., a national NAION expert and USAF M.D. for Vietnam POWs who is now retired .. recommended that I wait until “the absolute last minute” to have cataract surgery.? ? ? ?That is, when it causes problems, in daily life.
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Re: Hoping for some positive news
My wife has NAION in 1 eye, about 6 years ago.? She has the low cup
to disc ratio in both eyes but her good eye remains good.
Her episode occurred during a period of stress. We had just lost our
delightful dog to kidney disease and she was having tests done to
rule out breast cancer (turned out negative).
On 10/2/2024 7:45 AM, Chuu chan via
groups.io wrote:
Any more good and comforting examples of staying unilateral
for whatever period of time??
we all need encouraging news. Please
|
Re: Hoping for some positive news
Any more good and comforting examples of staying unilateral for whatever period of time??
we all need encouraging news. Please share your experiences.
?
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True if you don’t already have heart disease. ?If you already have heart disease then aspirin is likely part of your regimine.?
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Hi Chuu Chan,
The research has still not established what causes NAION. So prevention is an informed speculation.
Most of the work was done by Dr S S Hayreh, who sadly is not with us now.
I don’t think that Sleep Apnea is a major factor. All sleep studies everywhere in the world will show mild to moderate sleep apnea in many asymptomatic people. If anyone has severe sleep apnea, CPAP is required for other reasons.
I agree with Marc on this.
I will write here, as I have done previously also, what I am doing since my NAION attack.
1. I am taking my blood pressure medicines in the morning between 4 am to 5 am. I take them empty stomach. Since I am habituated to afternoon siesta, I?prefer?it this way, so that the peak effect is over by the time I sleep 2. I am taking antilipids 3. Ecosprin or baby aspirin. 4. Since stress may be a factor in contributing towards NAION, I take Clonazepam 0.25 mg, half morning and half evening. If I have more anxiety, then I take half three times a day. Clonazepam doesn’t Lower BP in mild doses. Less than or equal to 0.5 mg is ok, if taken in divided doses during the day. Doesn’t cause sleepiness. 5. I am putting Simbrinza eye drops twice daily and Lumigan at bed time, to keep my eye pressures lower. They have always been normal by AT even before my NAION attack, but we’re always 23 - 24 by NCT. So, after NAION, I started these in both eyes. 6. I have cut down my work to half for the past 4 years. Just to relax in the evenings with no work pressure.
That’s all broadly speaking.
Most welcome to clarify further. Anyone.
Hope this helps.
On Sunday, September 29, 2024, 4:36 PM, Chuu chan via groups.io <eggwah123@...> wrote: Hi Dr Gupta?
what is/are the NAION prevention medicine you mentioned about?
?
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Hi Dr Gupta?
what is/are the NAION prevention medicine you mentioned about?
?
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Hi Marc, can you reveal where you got the info from? From a NO or from reading?
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Re: Ischemic optic neuropathy
Did you start CPAP after that? How long it takes for you to get the CPAP?
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Re: Ischemic optic neuropathy
Do you have sleep apnea too? What happened after the weight loss? Is your sleep apnea cured?
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Re: Ischemic optic neuropathy
How long between your NAION onset and using the CPAP? I had NAION diagnosed a month ago, did all the test and scans. Now waiting for a sleep study which is still 6 weeks away. Just very apprehensive that I will get another attack for untreated sleep apnea.
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Hi Caroline. Once again. Thanks for helping me so much. It seems as the blurriness is my central vision and what you said makes sense?to me. Maybe no matter how strong my glasses are, they won’t ?t fix the blurriness. I often describe to people that is like looking at a tv screen that isn’t tuned properly. I have attached my script.?
On Sun, 29 Sep 2024 at 3:43?PM, Chiarina Blake < jc.blake2@...> wrote:
On Sat, 28 Sep 2024 at 6:04?PM, Caroline J via <gcarolinejoyce= [email protected]> wrote: Hi Chiarina, From what you are saying, it sounds like you have NAION permanent blurriness (scotoma) versus near or far-sighted blurriness. If you can see details better close up, but less so farther away, then that part of your vision can be treated for myopia with a prescription with a (-) Rx. If you can see between your blurriness a little farther away, but not close up, then you can try a stronger reading glass (+) magnifier. Dollar store readers of different strengths can help figure out if your reading strength needs a higher (+) number. I need both, and it is a very careful balance between balance between the far-sightedness Rx strength and the near-sightedness strength. I use contacts to correct my far-sighted blurriness and wear Rx readers for my nearsightedness to help me read and see the computer when my far-sighted corrective contacts exacerbate blurriness up close. I have found my progressive glasses to be frustrating at times with seeing my computer or reading my phone. It is why I prefer to do up-close reading with no corrective lenses and live in my myopic world. As far as strengths, I found this online: “ Mild: -0.50 to -3. Moderate: -3.25 to -5.00. High:?-5.25 to -10.
What are your Rx strengths?
As far as the permanent scotomas, that blurriness cannot be corrected, so we have to focus on correcting the vision around the permanent vision field losses or permanent blurred areas.
So, the more you understand your complex vision “blurriness” the better you can describe specifically to your optometrist which blurriness you feel can be improved. Describe how you see what you are able to see with your phone or a book—at the distance is it the least blurry. Describe how you can see around the scotomas, to make out colors, but the shapes and lines are blurrier when you are looking across the room. The changes in your vision since NAION should be correctable.
I hope this helps!
On Sat, Sep 28, 2024 at 12:23?AM Chiarina Blake via <jc.blake2= [email protected]> wrote: Hi dear Caroline. You have helped me before so much and I appreciate. Thank you. Both my eyes are in bad shape. I have had a dragged retina since born in my left eye so I have less than 20perce t vision in that eye and NAION effected my only good right eye 4 years ago. I have always relied on my once good ey to see. My left one just went on holiday lol. I can see colour well and I don’t have any streaks or blind spots. My vision is just blurry. I have lost a lot of contrast and I find detail difficult to see. I just assumed that if they made my lens stronger, it would get rid of the blur I was but nothing g seems to work. I just don’t understand how I can have a weak script when my vision is still blurry yet my Optometrist has tried so hard to lift my vision. All a mystery to me X? On Sat, 28 Sep 2024 at 1:00?AM, Caroline J via <gcarolinejoyce= [email protected]> wrote: Hi Chiarina,
You need an optometrist who sees beyond your lab results and listens to your needs. With my bilateral NAION, my dominant eye is centrally blind with many scotoma streaks. My left eye has a few scotomas with good peripheral vision. My brain has adapted and improved over the past 1 1/2 years, but my dominant right still spreads the gray gloom to my overall vision. With myopia, too, I recently went back to contacts because I feel I need ALL of my vision, including my peripheral. They strengthened my RX, and my new contacts felt off. Then I realized my dominant eye was responding to the stronger Rx and trying to dominate with the gray smears. So, I put my old weaker contact lens in my right, use my stronger Rx in my left, and for the first time, my left eye is dominant without battling my right.? I am ecstatic over the clarity.?
I know we are all unique in our experiences, but for those if us who have a “good” eye and a poor eye, it may be worth trying to lessen the Rx strength of the poor eye to help establish a stable dominance of the good eye.
I hope this helps some of you!
On Fri, Sep 27, 2024 at 2:42?AM Chiarina Blake via <jc.blake2= [email protected]> wrote: Hi there. Why can’t my glasses help me see clearer? Why do they say that I have a very light eye script why can’t they just make the script stronger? Thank you?
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On Sat, 28 Sep 2024 at 6:04?PM, Caroline J via <gcarolinejoyce= [email protected]> wrote: Hi Chiarina, From what you are saying, it sounds like you have NAION permanent blurriness (scotoma) versus near or far-sighted blurriness. If you can see details better close up, but less so farther away, then that part of your vision can be treated for myopia with a prescription with a (-) Rx. If you can see between your blurriness a little farther away, but not close up, then you can try a stronger reading glass (+) magnifier. Dollar store readers of different strengths can help figure out if your reading strength needs a higher (+) number. I need both, and it is a very careful balance between balance between the far-sightedness Rx strength and the near-sightedness strength. I use contacts to correct my far-sighted blurriness and wear Rx readers for my nearsightedness to help me read and see the computer when my far-sighted corrective contacts exacerbate blurriness up close. I have found my progressive glasses to be frustrating at times with seeing my computer or reading my phone. It is why I prefer to do up-close reading with no corrective lenses and live in my myopic world. As far as strengths, I found this online: “ Mild: -0.50 to -3. Moderate: -3.25 to -5.00. High:?-5.25 to -10.
What are your Rx strengths?
As far as the permanent scotomas, that blurriness cannot be corrected, so we have to focus on correcting the vision around the permanent vision field losses or permanent blurred areas.
So, the more you understand your complex vision “blurriness” the better you can describe specifically to your optometrist which blurriness you feel can be improved. Describe how you see what you are able to see with your phone or a book—at the distance is it the least blurry. Describe how you can see around the scotomas, to make out colors, but the shapes and lines are blurrier when you are looking across the room. The changes in your vision since NAION should be correctable.
I hope this helps!
On Sat, Sep 28, 2024 at 12:23?AM Chiarina Blake via <jc.blake2= [email protected]> wrote: Hi dear Caroline. You have helped me before so much and I appreciate. Thank you. Both my eyes are in bad shape. I have had a dragged retina since born in my left eye so I have less than 20perce t vision in that eye and NAION effected my only good right eye 4 years ago. I have always relied on my once good ey to see. My left one just went on holiday lol. I can see colour well and I don’t have any streaks or blind spots. My vision is just blurry. I have lost a lot of contrast and I find detail difficult to see. I just assumed that if they made my lens stronger, it would get rid of the blur I was but nothing g seems to work. I just don’t understand how I can have a weak script when my vision is still blurry yet my Optometrist has tried so hard to lift my vision. All a mystery to me X? On Sat, 28 Sep 2024 at 1:00?AM, Caroline J via <gcarolinejoyce= [email protected]> wrote: Hi Chiarina,
You need an optometrist who sees beyond your lab results and listens to your needs. With my bilateral NAION, my dominant eye is centrally blind with many scotoma streaks. My left eye has a few scotomas with good peripheral vision. My brain has adapted and improved over the past 1 1/2 years, but my dominant right still spreads the gray gloom to my overall vision. With myopia, too, I recently went back to contacts because I feel I need ALL of my vision, including my peripheral. They strengthened my RX, and my new contacts felt off. Then I realized my dominant eye was responding to the stronger Rx and trying to dominate with the gray smears. So, I put my old weaker contact lens in my right, use my stronger Rx in my left, and for the first time, my left eye is dominant without battling my right.? I am ecstatic over the clarity.?
I know we are all unique in our experiences, but for those if us who have a “good” eye and a poor eye, it may be worth trying to lessen the Rx strength of the poor eye to help establish a stable dominance of the good eye.
I hope this helps some of you!
On Fri, Sep 27, 2024 at 2:42?AM Chiarina Blake via <jc.blake2= [email protected]> wrote: Hi there. Why can’t my glasses help me see clearer? Why do they say that I have a very light eye script why can’t they just make the script stronger? Thank you?
|
Hi Chiarina, From what you are saying, it sounds like you have NAION permanent blurriness (scotoma) versus near or far-sighted blurriness. If you can see details better close up, but less so farther away, then that part of your vision can be treated for myopia with a prescription with a (-) Rx. If you can see between your blurriness a little farther away, but not close up, then you can try a stronger reading glass (+) magnifier. Dollar store readers of different strengths can help figure out if your reading strength needs a higher (+) number. I need both, and it is a very careful balance between balance between the far-sightedness Rx strength and the near-sightedness strength. I use contacts to correct my far-sighted blurriness and wear Rx readers for my nearsightedness to help me read and see the computer when my far-sighted corrective contacts exacerbate blurriness up close. I have found my progressive glasses to be frustrating at times with seeing my computer or reading my phone. It is why I prefer to do up-close reading with no corrective lenses and live in my myopic world. As far as strengths, I found this online: “ Mild: -0.50 to -3. Moderate: -3.25 to -5.00. High:?-5.25 to -10.
What are your Rx strengths?
As far as the permanent scotomas, that blurriness cannot be corrected, so we have to focus on correcting the vision around the permanent vision field losses or permanent blurred areas.
So, the more you understand your complex vision “blurriness” the better you can describe specifically to your optometrist which blurriness you feel can be improved. Describe how you see what you are able to see with your phone or a book—at the distance is it the least blurry. Describe how you can see around the scotomas, to make out colors, but the shapes and lines are blurrier when you are looking across the room. The changes in your vision since NAION should be correctable.
I hope this helps!
On Sat, Sep 28, 2024 at 12:23?AM Chiarina Blake via <jc.blake2= [email protected]> wrote: Hi dear Caroline. You have helped me before so much and I appreciate. Thank you. Both my eyes are in bad shape. I have had a dragged retina since born in my left eye so I have less than 20perce t vision in that eye and NAION effected my only good right eye 4 years ago. I have always relied on my once good ey to see. My left one just went on holiday lol. I can see colour well and I don’t have any streaks or blind spots. My vision is just blurry. I have lost a lot of contrast and I find detail difficult to see. I just assumed that if they made my lens stronger, it would get rid of the blur I was but nothing g seems to work. I just don’t understand how I can have a weak script when my vision is still blurry yet my Optometrist has tried so hard to lift my vision. All a mystery to me X? On Sat, 28 Sep 2024 at 1:00?AM, Caroline J via <gcarolinejoyce= [email protected]> wrote: Hi Chiarina,
You need an optometrist who sees beyond your lab results and listens to your needs. With my bilateral NAION, my dominant eye is centrally blind with many scotoma streaks. My left eye has a few scotomas with good peripheral vision. My brain has adapted and improved over the past 1 1/2 years, but my dominant right still spreads the gray gloom to my overall vision. With myopia, too, I recently went back to contacts because I feel I need ALL of my vision, including my peripheral. They strengthened my RX, and my new contacts felt off. Then I realized my dominant eye was responding to the stronger Rx and trying to dominate with the gray smears. So, I put my old weaker contact lens in my right, use my stronger Rx in my left, and for the first time, my left eye is dominant without battling my right.? I am ecstatic over the clarity.?
I know we are all unique in our experiences, but for those if us who have a “good” eye and a poor eye, it may be worth trying to lessen the Rx strength of the poor eye to help establish a stable dominance of the good eye.
I hope this helps some of you!
On Fri, Sep 27, 2024 at 2:42?AM Chiarina Blake via <jc.blake2= [email protected]> wrote: Hi there. Why can’t my glasses help me see clearer? Why do they say that I have a very light eye script why can’t they just make the script stronger? Thank you?
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GaryGBrown
Caroline J