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Sticky: Advice on Dealing with the Emotional Side of NAION
So very sorry to have read about your NAION.
Four words describe me in this remaining?life now. Anxiety, apprehension, uncertainty and insecurity.
It¡¯s going to be an everyday fight within you, because vision loss is something which you will always be aware of every waking moment of the day.
The thought, why it happened to me will always crop in your mind. But believe me, there is no answer and there is nobody out there to protect you. You only have to get up every day, dust yourself and your thoughts and move on. Maybe your spouse will be the only person, who will be sympathetic towards you.
You will always think that despite being a firm believer in God, despite not doing bad to anyone else, despite being a healthy person, despite being honest and nice person, why did it happen to me. Again, you will never find?answer to these questions either within yourself or from someone else.
But, despite all the bad (NAION), happened to you, you are the only one, who has to rise.
Believe me, no meditation, no prayer, no visit to your place of worship will help.
Just go out, meet people, laugh with them but never share your problem with them. No one is interested in your agonies. No one really cares or sympathises. Just meet people, so that the intensity of sorrow in your heart goes down.
This is the only group, which will realise what you are going through because we are the?fellow sufferers.
Take the medication prescribed by your doctor regularly.
Flying in an aircraft is not a risk at all.
Low vision gadgets?only help to a small extent.
Use?eye glasses for the better eye and?you can take them?anytime.
Don¡¯t worry, nothing will happen to your better eye.
Start driving, whenever you want. But remember, since your binocular vision and depth perception has suffered, you will relearn the distance judgement, if you drive slowly and regularly.
Brights lights will bother you for a while. Use sunglasses outside. Dim your lights inside.
Hope my post is able to answer questions you asked and also those you will ask yourself repeatedly but won¡¯t get a satisfactory answer ever.
Hope this helps
Aloke
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Fantastic post Aloke. Very true and should be read by every NAION member. Probably the best advice I have read in the last 8 years
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On 30 Apr 2023, at 10:46, Aloke Gupta via groups.io <gaurieyeclinic@...> wrote:
? Deborah, very sorry to have read about your NAION.
Four words describe me in this remaining?life now. Anxiety, apprehension, uncertainty and insecurity.
It¡¯s going to be an everyday fight within you, because vision loss is something which you will always be aware of every waking moment of the day.
The thought, why it happened to me will always crop in your mind. But believe me, there is no answer and there is nobody out there to protect you. You only have to get up every day, dust yourself and your thoughts and move on. Maybe your spouse will be
the only person, who will be sympathetic towards you.
You will always think that despite being a firm believer in God, despite not doing bad to anyone else, despite being a healthy person, despite being honest and nice person, why did it happen to me. Again, you will never find?answer to these questions either
within yourself or from someone else.
But, despite all the bad (NAION), happened to you, you are the only one, who has to rise.
Believe me, no meditation, no prayer, no visit to your place of worship will help.?
Just go out, meet people, laugh with them but never share your problem with them. No one is interested in your agonies. No one really cares or sympathises. Just meet people, so that the intensity of sorrow in your heart goes down.
This is the only group, which will realise what you are going through because we are the?fellow sufferers.
Take the medication prescribed by your doctor regularly.
Flying in an aircraft is not a risk at all.
Low vision gadgets?only help to a small extent.
Use?eye glasses for the better eye and?you can take them?anytime.
Don¡¯t worry, nothing will happen to your better eye.?
Start driving, whenever you want. But remember, since your binocular vision and depth perception has suffered, you will relearn the distance judgement, if you drive slowly and regularly.
Brights lights will bother you for a while. Use sunglasses outside. Dim your lights inside.
Hope my post is able to answer questions you asked and also those you will ask yourself repeatedly but won¡¯t get a satisfactory answer ever.
Hope this helps
Aloke
On Sunday, April 30, 2023, 2:33 AM, Russ Poter via groups.io <russpoter@...> wrote:
- how soon after your diagnosis did you get a new eyeglass prescription. I have moderate prescriptions for both distance and reading, prior to my NAION.? I am being told to wait for 6 months
IMHO, wait. It takes time for brain to adjust. And some N.O. doctors will do 'scripts, and they are ultra-good at it.
- any experiences with low vision therapy?
helped me.
- if/when to return to driving?
Be extra careful.
-? air travel? .. I am concerned about the issue of cabin pressure
Most have reported 0.0 problems.
- how to navigate difficult lighting both indoors and outside.?
Always be careful.? Slow down.? Ask for help, it is no big deal.
My $0.02.? Best wishes.
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So very sorry to have read about your NAION.
?
Four words describe me in this remaining?life now. Anxiety, apprehension, uncertainty and insecurity.
?
It¡¯s going to be an everyday fight within you, because vision loss is something which you will always be aware of every waking moment of the day.
?
The thought, why it happened to me will always crop in your mind. But believe me, there is no answer and there is nobody out there to protect you. You only have to get up every day, dust yourself and your thoughts and move on. Maybe your spouse will be the only person, who will be sympathetic towards you.
?
You will always think that despite being a firm believer in God, despite not doing bad to anyone else, despite being a healthy person, despite being honest and nice person, why did it happen to me. Again, you will never find?answer to these questions either within yourself or from someone else.
?
But, despite all the bad (NAION), happened to you, you are the only one, who has to rise.
?
Believe me, no meditation, no prayer, no visit to your place of worship will help.?
?
Just go out, meet people, laugh with them but never share your problem with them. No one is interested in your agonies. No one really cares or sympathises. Just meet people, so that the intensity of sorrow in your heart goes down.
?
This is the only group, which will realise what you are going through because we are the?fellow sufferers.
?
Take the medication prescribed by your doctor regularly.
?
Flying in an aircraft is not a risk at all.
?
Low vision gadgets?only help to a small extent.
?
Use?eye glasses for the better eye and?you can take them?anytime.
?
Don¡¯t worry, nothing will happen to your better eye.?
?
Start driving, whenever you want. But remember, since your binocular vision and depth perception has suffered, you will relearn the distance judgement, if you drive slowly and regularly.
?
Brights lights will bother you for a while. Use sunglasses outside. Dim your lights inside.
?
Hope my post is able to answer questions you asked and also those you will ask yourself repeatedly but won¡¯t get a satisfactory answer ever.
?
Hope this helps
?
On Sunday, April 30, 2023, 2:33 AM, Russ Poter via groups.io <russpoter@...> wrote:
?
- how soon after your diagnosis did you get a new eyeglass prescription. I have moderate prescriptions for both distance and reading, prior to my NAION.? I am being told to wait for 6 months
IMHO, wait. It takes time for brain to adjust. And some N.O. doctors will do 'scripts, and they are ultra-good at it.
?
- any experiences with low vision therapy?
?
helped me.
- if/when to return to driving?
?
Be extra careful.
-? air travel? .. I am concerned about the issue of cabin pressure
?
Most have reported 0.0 problems.
- how to navigate difficult lighting both indoors and outside.?
Always be careful.? Slow down.? Ask for help, it is no big deal.
?
My $0.02.? Best wishes.
|
- how soon after your diagnosis did you get a new eyeglass prescription. I have moderate prescriptions for both distance and reading, prior to my NAION.? I am being told to wait for 6 months
IMHO, wait. It takes time for brain to adjust. And some N.O. doctors will do 'scripts, and they are ultra-good at it.
- any experiences with low vision therapy?
helped me.
- if/when to return to driving?
Be extra careful.
-? air travel? .. I am concerned about the issue of cabin pressure
Most have reported 0.0 problems.
- how to navigate difficult lighting both indoors and outside.?
Always be careful.? Slow down.? Ask for help, it is no big deal.
My $0.02.? Best wishes.
|
Hello All.... I am Deborah and I live in Toronto, Canada. I am in my 60s...resigned a few years ago from a? challenging but stressful job after a really great career.? Decided to "trial" some time off....which actually became an early retirement.? I have never looked back!? Seized the opportunity for more time with friends, care of super-senior parents, and best of all lots of travel and adventures with my husband.? Of course it was my plan to continue to do much more. I am a high energy, active person; always aware and appreciative of my very good health.? But suddenly....
My episode began in the middle of December.? I noticed a bit of a dark shadow in my left eye one morning; after 4 days I went to optometrist as it was getting worse and I feared a detached retina.? Over the next 10 days I went to various physicians, specialists, hospital emerg, retina institute..and on January 2, I was diagnosed with NAION. What is that?? I was in shock when the neuro-ophthalmologist further advised me that the damage was irreparable, and that my vision would likely get worse before it settled. Four months later, I still feel very lethargic; it takes a long time in the morning to feel like my yes are settled for the day, and I am constantly concerned that my right (good) eye is not seeing as well as it did the day before!
While the healthcare system was really responsive with access and timing of the diagnosis, I have felt totally let down by the lack of information, direction and follow-up as to now learn to adjust to this condition. So I was very appreciative to find this group.
Also I have finally made a connection with CNIB (Canadian Institute for the Blind).? They are setting me up with a low vision specialist in a few weeks.
Most of what I am experiencing seems to be mentioned in posts among this group.? However I still frequently feel a strange sense lightheadedness or mild feeling a bit out of balance...kind of like I am on a boat.? Anyone else??
I have been following this group's postings for a month and have already learned several helpful tips.? I still have concerns and questions and would welcome your experiences and advice regarding:
- how soon after your diagnosis did you get a new eyeglass prescription. I have moderate prescriptions for both distance and reading, prior to my NAION.? I am being told to wait for 6 months
- any experiences with low vision therapy?
- if/when to return to driving?
-? air travel? .. I am concerned about the issue of cabin pressure
- how to navigate difficult lighting both indoors and outside.?
Thank you
BTW - I noticed that someone here mentioned the Frank Bruni book The Beauty of Dusk.? I immediately downloaded an audio copy and am halfway through it.? His descriptions of the physical and emotional experiences are spot on (for me)? ?I highly recommend the book...it is well written and feels very supportive.
??
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Yes, it is true in mice but there are many problems in duplicating
this in humans. Dr. Sinclair is well known as a sensationalist.
That is how he sells books. The method he is talking about is the
use of 4 compounds known as the Yamanaka Factors. (Google it.)
The 4 are abbreviated as O,K,S and M.
Here is a brief summary of the problems that are encountered when
trying to use this in humans from another expert in this field:
Aubrey de Grey:
The problem is that OKSM doesn't only eliminate noise - it
eliminates
(very nearly) all epigenetic marks, whether noise or signal. The
only
reason it can be therapeutic is because doing just a little bit
of
that wiping of information seems to be OK - the cell can use the
residual signal as a guide to rebuild the lost signal, whereas
the
proportion of the noise that was also removed is really gone.
Sounds
good! Except ... that in the body (even the young adult) there
are a
lot of cells that are most of the way to becoming cancerous.
These
cells are in what we can think of as an epigenetically fragile
state:
it doesn't take much to tip them over the edge, because their
cell-cycle stabilisation defences are already damaged. So, all
in
all, I am currently quite pessimistic about the future of
OKSM-based
rejuvenation.
On 4/25/2023 11:17 PM, SuzySaskatchewan
wrote:
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Sounds too good to be true but would be marvelous wouldn't it
Get
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I had my NAION attack last May, as we all know it¡¯s been a difficult road. I was also told not to wear an eye patch but always found it easier to see with the bad eye covers on but only wore the patch on days that I was really struggling. Now after almost a year it, my brain has been adjusting and it has become less difficult. I still find it difficult to drive at night or in inclement weather. To help with this I bought a pack of black post it notes and keep them in my car. If I have issues with driving I¡¯ll stick the note on the inside of my glasses and tear the paper to fit the lense. It helps my vision driving with the NAION eye blacked out and I still have a little peripheral vision because the eye isn¡¯t completely covered. Life does get easier and our brains are amazing adjusting with time. I am often asked by family and friends how am I doing and my response is that after almost a year, ?the emotional difficulties with this have pretty much leveled out but the physical challenges continue. I find that as each day passes I am happier and more ?thankful for the gift of life. I wish everyone strength and happiness. Don White
On Sun, Apr 23, 2023 at 4:14 PM Diane Keasler via <dlkeasler= [email protected]> wrote: I created an eye patch for myself to see if it would help and it seems to, especially with depth perception.? I'd appreciate any info about wearing one.? Thanks so much.? This is such a helpful group.
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On Sunday, April 23, 2023 at 06:03:19 PM EDT, Louie via groups.io <screwielouietoo@...> wrote:
My NO said not to?wear an eye patch. It takes about six months for your brain to adjust to your vision loss. Wearing an eye patch just extends this adjustment. I had my attack in my left eye in 2005, and have been doing most everything I always did. Give it a chance!! Screwie Louie¡¯s iPhone? ![]() ? ![]()
On Sunday, April 23, 2023, 4:14 PM, Diane Keasler via groups.io <dlkeasler@...> wrote: I created an eye patch for myself to see if it would help and it seems to, especially with depth perception.? I'd appreciate any info about wearing one.? Thanks so much.? This is such a helpful group.
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My NO said not to?wear an eye patch. It takes about six months for your brain to adjust to your vision loss. Wearing an eye patch just extends this adjustment. I had my attack in my left eye in 2005, and have been doing most everything I always did. Give it a chance!! Screwie Louie¡¯s iPhone?  ? 
On Sunday, April 23, 2023, 4:14 PM, Diane Keasler via groups.io <dlkeasler@...> wrote: I created an eye patch for myself to see if it would help and it seems to, especially with depth perception.? I'd appreciate any info about wearing one.? Thanks so much.? This is such a helpful group.
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I have found it does get better and with the eye unpatched I think helped with the fact that 15 years out there are times my brain doesn'tt even notice I have vision loss. Then I get a snap back to reality. So sorry Paul and Diane that you had to join this group.? There are still days of struggle for me but thankful for the eyesight I have and very protective of it so I don't loose more.? I have been stable for over 14 years with every 6 months checkup with Neuro op and a retina specialist/ophthalmologist.?
On Sun, Apr 23, 2023 at 15:57, Paul Campano <campano21@...> wrote:
Hi Diane,
I lost the vision in my right eye last August-I know what you mean-I got better info from searching online than I have from my doctors!
The two hardest tests on the spiritual road are the patience to wait for the right moment and the courage not to be disappointed with what we encounter----Paulo Coelho?
I would be true, for there are those who trust me: I would be pure, for there are those who care; I would be strong, for there is much to suffer; I would be brave, for there is much to dare-Howard Walter
On 04/23/2023 4:42 PM Diane Keasler via groups.io <dlkeasler@...> wrote:
Thanks so much, Deb, for sharing your experience and suggestion.
It's been 10 months.? Imperceptible change if any. Truth be told, I get more info from this group
 ?than I have from my ophthalmologist and neuro-ophthalmologist.
 ? I? need to find better.
Diane Keasler
Life is the school, love is the lesson.
On Sunday, April 23, 2023 at 04:33:26 PM EDT, dslonsdale@... via groups.io <dslonsdale@...> wrote:
Hi!
I don't know if anything has changed but I know when mine occurred in 2008 I asked my Neuro op if I should patch the effected eye and was told no.? That if I did that, it would take longer for my brain to compemsate for the vision loss.??
Not sure when your loss occurred but that is something you should check with your Neuro op as to if he agrees with covering that eye.
Deb Lonsdale
On Sun, Apr 23, 2023 at 15:14, Diane Keasler via groups.io
<dlkeasler@...> wrote:
I created an eye patch for myself to see if it would help and it seems to, especially with depth perception.? I'd appreciate any info about wearing one.? Thanks so much.? This is such a helpful group.
|
Hi Diane,
I lost the vision in my right eye last August-I know what you mean-I got better info from searching online than I have from my doctors!
The two hardest tests on the spiritual road are the patience to wait for the right moment and the courage not to be disappointed with what we encounter----Paulo Coelho?
I would be true, for there are those who trust me: I would be pure, for there are those who care; I would be strong, for there is much to suffer; I would be brave, for there is much to dare-Howard Walter
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On 04/23/2023 4:42 PM Diane Keasler via groups.io <dlkeasler@...> wrote:
Thanks so much, Deb, for sharing your experience and suggestion.
It's been 10 months.? Imperceptible change if any. Truth be told, I get more info from this group
?than I have from my ophthalmologist and neuro-ophthalmologist.
? I? need to find better.
Diane Keasler
Life is the school, love is the lesson.
On Sunday, April 23, 2023 at 04:33:26 PM EDT, dslonsdale@... via groups.io <dslonsdale@...> wrote:
Hi!
I don't know if anything has changed but I know when mine occurred in 2008 I asked my Neuro op if I should patch the effected eye and was told no.? That if I did that, it would take longer for my brain to compemsate for the vision loss.??
Not sure when your loss occurred but that is something you should check with your Neuro op as to if he agrees with covering that eye.
Deb Lonsdale
On Sun, Apr 23, 2023 at 15:14, Diane Keasler via groups.io
<dlkeasler@...> wrote:
I created an eye patch for myself to see if it would help and it seems to, especially with depth perception.? I'd appreciate any info about wearing one.? Thanks so much.? This is such a helpful group.
|
Thanks so much, Deb, for sharing your experience and suggestion.
It's been 10 months.? Imperceptible change if any. Truth be told, I get more info from this group ?than I have from my ophthalmologist and neuro-ophthalmologist. ? I? need to find better.
Diane Keasler
Life is the school, love is the lesson.
On Sunday, April 23, 2023 at 04:33:26 PM EDT, dslonsdale@... via groups.io <dslonsdale@...> wrote:
Hi! I don't know if anything has changed but I know when mine occurred in 2008 I asked my Neuro op if I should patch the effected eye and was told no.? That if I did that, it would take longer for my brain to compemsate for the vision loss.?? Not sure when your loss occurred but that is something you should check with your Neuro op as to if he agrees with covering that eye.
On Sun, Apr 23, 2023 at 15:14, Diane Keasler via groups.io <dlkeasler@...> wrote: I created an eye patch for myself to see if it would help and it seems to, especially with depth perception.? I'd appreciate any info about wearing one.? Thanks so much.? This is such a helpful group.
|
Hi! I don't know if anything has changed but I know when mine occurred in 2008 I asked my Neuro op if I should patch the effected eye and was told no.? That if I did that, it would take longer for my brain to compemsate for the vision loss.?? Not sure when your loss occurred but that is something you should check with your Neuro op as to if he agrees with covering that eye.
On Sun, Apr 23, 2023 at 15:14, Diane Keasler via groups.io <dlkeasler@...> wrote: I created an eye patch for myself to see if it would help and it seems to, especially with depth perception.? I'd appreciate any info about wearing one.? Thanks so much.? This is such a helpful group.
|
I created an eye patch for myself to see if it would help and it seems to, especially with depth perception.? I'd appreciate any info about wearing one.? Thanks so much.? This is such a helpful group.
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Yes. I read the book. I am so glad that I never underwent the eye injections that he endured to try to counteract his vision loss. You will learn a lot in his narrative of vision loss. Good luck.
On Tuesday, April 18, 2023 at 05:06:52 PM EDT, Caroline J <gcarolinejoyce@...> wrote:
I am listening to Frank Bruni¡¯s book ?on his experience with NAION: The Beauty of Dusk. ?It is therapeutic to hear him share his experiences from the onset onwards. I am only on chapter 2 but wanted to share! As anyone read it or listened to it? It is on Audible.
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I am listening to Frank Bruni¡¯s book ?on his experience with NAION: The Beauty of Dusk. ?It is therapeutic to hear him share his experiences from the onset onwards. I am only on chapter 2 but wanted to share! As anyone read it or listened to it? It is on Audible.
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Re: Swelling not improving
Hi Andrea, your were lucky for them to have caught the swelling! After episode 1, my NO said no steroids and still did not give them after my 2nd episode 2 weeks later (when I could have been on steroids from the first episode). I have pretty much lost all central vision in my second eye but regained most of it in my first. I will always wonder if steroids could have helped the outcome of my second or prevented the event.
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My NO said no to my inversion table.
Hi.? My?ophthalmologist advised me to avoid positions like hanging from my feet or any that would make my face turn red and the blood vessels stand out. He advised that impairment of blood flow is felt?too possibly contribute toward vascular changes in the eye, especially glaucoma and other conditions. ?So I avoid exercises where this would happen and I no longer lay my head in a massage cradle when I get a massage. ? ?I would check with your ophthalmologist.?
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DeborahD
Louie
Caroline J