Re: Naion eye progression
I have bundled blood vessels and my NO said Fish oil and baby aspirin will help the small blood vessels like in your eyes. Also being my over weight can make blood pressures drop at night, especially if you have mild sleep apnea.
On Sunday, March 19, 2023, 1:07 PM, Deane Williams <pyroartist@...> wrote:
Carlo,
? One member of our group has reported improved vision after a
special acupuncture treatment around the eye.
Here are the details of that special treatment which must be done by
a skilled acupuncturist:
???
Dean
(Moderator)
On 3/19/2023 12:38 PM, carlo maglione
via groups.io wrote:
Has anyone tried Accupuncture?
I read there is some hope for this as a treatment but nothing
is guaranteed.
On Sunday, March 19, 2023, 8:37 AM, Medi Far
<f.far977@...> wrote:
I want to say, naion is cause low blood pressure,? my
old left naion convert to bilateral pion and I'm blind.
|
Re: Naion eye progression
Carlo,
? One member of our group has reported improved vision after a
special acupuncture treatment around the eye.
Here are the details of that special treatment which must be done by
a skilled acupuncturist:
???
Dean
(Moderator)
On 3/19/2023 12:38 PM, carlo maglione
via groups.io wrote:
toggle quoted message
Show quoted text
Has anyone tried Accupuncture?
I read there is some hope for this as a treatment but nothing
is guaranteed.
On Sunday, March 19, 2023, 8:37 AM, Medi Far
<f.far977@...> wrote:
I want to say, naion is cause low blood pressure,? my
old left naion convert to bilateral pion and I'm blind.
|
Re: Naion eye progression
And unfortunately there is zero evidence that any of that will help your vision although it undoubtedly improves your health in myriad other ways.
I have made similar changes and it¡¯s 10 years since my NAION attack and I am amazed how little it has affected my life. However it is definitely harder to light up a marijuana roach.?
Once your optic nerve is dead, I do not see how acupuncture could help anything. I lost all of my central vision in my left eye in 2005. I lost 45 pounds, and have been taking 2000 mg of omega 3 extra strength fish oil and a baby aspirin every day since. My right eye has 20/20 ?with glasses, and I do most everything I always did. I also walk 5 miles every morning, and have averaged 17,000 steps on my Fitbit for 925 straight days and counting. Lou in Myrtle Beach SC On Sunday, March 19, 2023, 12:38 PM, carlo maglione via <maglione1111=[email protected]> wrote:
Has anyone tried Accupuncture? I read there is some hope for this as a treatment but nothing is guaranteed. On Sunday, March 19, 2023, 8:37 AM, Medi Far <f.far977@...> wrote: I want to say, naion is cause low blood pressure,? my old left naion convert to bilateral pion and I'm blind.
|
Re: Naion eye progression
Once your optic nerve is dead, I do not see how acupuncture could help anything. I lost all of my central vision in my left eye in 2005. I lost 45 pounds, and have been taking 2000 mg of omega 3 extra strength fish oil and a baby aspirin every day since. My right eye has 20/20 ?with glasses, and I do most everything I always did. I also walk 5 miles every morning, and have averaged 17,000 steps on my Fitbit for 925 straight days and counting.
On Sunday, March 19, 2023, 12:38 PM, carlo maglione via groups.io <maglione1111@...> wrote:
Has anyone tried Accupuncture? I read there is some hope for this as a treatment but nothing is guaranteed. On Sunday, March 19, 2023, 8:37 AM, Medi Far <f.far977@...> wrote: I want to say, naion is cause low blood pressure,? my old left naion convert to bilateral pion and I'm blind.
|
Re: Naion eye progression
Has anyone tried Accupuncture? I read there is some hope for this as a treatment but nothing is guaranteed.
On Sunday, March 19, 2023, 8:37 AM, Medi Far <f.far977@...> wrote: I want to say, naion is cause low blood pressure,? my old left naion convert to bilateral pion and I'm blind.
|
Re: Naion eye progression
I want to say, naion is cause low blood pressure,? my old left naion convert to bilateral pion and I'm blind.
|
Re: Naion eye progression
Thank you for sharing your story about regaining over a few months. It gives me hope that my brain will also figure out how to deal with the unique losses in each eye.
|
Thanks for sharing!? As far as I know, I have never had COVID or have been asymptomatic. NAION effects seem to vary so much among individuals.?
Has anyone had a fellow eye episode between the 1-5 year range? Or a reoccurrence in the same eye?
Hi sorry to hear about your naion diagnosis I am 42 and was diagnosed at 40 with naion in my right eye. Also no known cause for mine I do not have high blood pressure, cholesterol, or diabetes. The only thing I can think of is I had a severe case of covid that landed me in the hospital on oxygen for almost a week and this happened the week or so before my naion event. My right eye as far as I can tell has not recovered any vision but I am due for a visit with my neuro opthalmologist soon.?
On Sat, Feb 11, 2023, 11:50 AM < bdc@...> wrote: hi everyone...i just joined yesterday.? i am very new to NAION...i am a 48 year old female and on dec 4th i discovered that i my vision was very blurry.? it took a few weeks, but the dr diagnosed me w/ NAION in both eyes. which i was told was pretty rare.
? i had 3 days of IV steroids in the hospital and had 2 months of oral steroids. the swelling has gone down some but my eye sight is currently 20/400 in both eyes.? this has absolutely changed my life...i can't drive or work.? ?reading glasses help me see a little better with my left eye.? my right eye only see's blurriness and my refraction test is a zero, so no corrective lens will help.? i'm so scared because the more research i do, the more i realize that i'm probably not going to get any better.? i know this is a waiting game and i just need to be patient but it's so hard.? it also scares me because they are not certain why this happened to me so it i don't know if this will happen again and loose more sight.??
|
Thanks for sharing. I will look into these. So far, I seem to prefer the night time for seeing easier since I don¡¯t have the glare issues, but it is still all so new and changing at this point. Fluorescent lights are the worst for me.
I use the Cacoon twilight and night glasses.? I can still drive
but nighttime is tough.? The glasses help me.? I also use them
sometime to watch TV particularly if the image is dark.? I also
garden with them if the light is low.
On 3/18/2023 8:57 PM, Caroline J wrote:
Hi Brandi and Karl,
I am 50, and I have also been diagnosed with bilateral NAION.
And Karl, I live in Greenville, NC! It started in February with
a gray curtain in the top half of my left eye. Since my right
eye compensated for the vision loss, I was able to function, but
I had a sequential event 15 days later. My vision was totally
blocked with something similar to light gray wool spread across
my entire field of vision. It took about five days for it to set
in, and all of a sudden, I couldn¡¯t drive or see my computer
screen. In February, my doctors in Eastern NC had never seen
this in a patient and were speculating MS, but I was referred to
Duke and my NO diagnosed me immediately with a ¡°disc at risk¡± in
my left eye and a normal size disk in my right. I have been on a
baby aspirin for the past five years, and I still suffered from
two concurrent episodes. While the MRI and lab work show no
other risk factors, I am scheduled for a sleep study next week.
My doctor would not put me on steroids due to side effect risks
and no proof that they work and said that it will be 6-8 weeks
for the swelling to go down. Fortunately, I have regained much
of my vision in my left eye since 2 weeks after the episode.
Similarly, I have begun losing the gray wool in my right eye,
but I still cannot see a face or read anything with my right
eye. I can tell my brain is working hard with trying to make
sense of what I am seeing: flashes of light, intricate patterns
in the white black space, kaleidoscope of colors when I close my
eyes¡As for my stereoscopic vision, I simply cannot see the left
side of the faces of my family members at the table. For the
first time, I was able to see their entire faces three days ago
when I was in touch proximity.
At night, I have awakened in a panic on a few occasions since
that is how I first lost my sight with my right eye. It is
scary. I feel I am in the prime of my career and, all of the
sudden, I am taking FMLA for at least a month. When I see my NO
in a few weeks, she said she would schedule me with Duke¡¯s
visual occupational therapists to get visual device aids and to
learn to deal with my vision loss. She also mentioned that they
would work with me to assess my driving ability. That was
devastating to hear. However, I am trying to remain positive
since I have improving vision. Although, I am suffering from a
slight tear that runs diagonally through my left eye, only
little spots of vision in my right, and I suffer from contrast,
glare, blurry vision, central acuity and visual field loss. Has
anyone tried amber glasses? I tried some tinted glasses at the
store and they seemed to really help with the glare and
contrast. I wear glasses already, so I will need to hold off
until a new Rx. My progressive lenses are not very effective at
this time.
that felt good to unload. I am so happy I found this group. It
is so isolating trying to describe what I am experiencing. No
one understands. I have even taken photos with my phone and
edited them with gray and white streaks to show what my works
looks like, but they still have a hard time grasping it.
|
Hi Diane. What a small world! Out of 134 members, already 3 from NC. I see Dr. Yue Li, who is also in Neuro. Did you regain any vision?
While I have much of my vision ?back in the left and can see the eye chart, I continue to suffer from the glare, contrast and blurriness. Does that improve with time for those of you who have had improvements? It has been 40 days in my left, so far.
On Sun, Mar 19, 2023 at 12:16 AM Diane Keasler via <dlkeasler= [email protected]> wrote: Hello Caroline, it is SO GOOD you have regained most of the vision in your left eye!? I have seen Dr. Boisvert at Duke.? Is that who you are seeing?
Diane Keasler
Life is the school, love is the lesson.
Hi Brandi and Karl,
I am 50, and I have also been diagnosed with bilateral NAION. And Karl, I live in Greenville, NC! It started in February with a gray curtain in the top half of my left eye. Since my right eye compensated for the vision loss, I was able to function, but I had a sequential event 15 days later. My vision was totally blocked with something similar to light gray wool spread across my entire field of vision. It took about five days for it to set in, and all of a sudden, I couldn¡¯t drive or see my computer screen. In February, my doctors in Eastern NC had never seen this in a patient and were speculating MS, but I was referred to Duke and my NO diagnosed me immediately with a ¡°disc at risk¡± in my left eye and a normal size disk in my right. I have been on a baby aspirin for the past five years, and I still suffered from two concurrent episodes. While the MRI and lab work show no other risk factors, I am scheduled for a sleep study next week. My doctor would not put me on steroids due to side effect risks and no proof that they work and said that it will be 6-8 weeks for the swelling to go down. Fortunately, I have regained much of my vision in my left eye since 2 weeks after the episode. Similarly, I have begun losing the gray wool in my right eye, but I still cannot see a face or read anything with my right eye. I can tell my brain is working hard with trying to make sense of what I am seeing: flashes of light, intricate patterns in the white black space, kaleidoscope of colors when I close my eyes¡As for my stereoscopic vision, I simply cannot see the left side of the faces of my family members at the table. For the first time, I was able to see their entire faces three days ago when I was in touch proximity.
At night, I have awakened in a panic on a few occasions since that is how I first lost my sight with my right eye. It is scary. I feel I am in the prime of my career and, all of the sudden, I am taking FMLA for at least a month. When I see my NO in a few weeks, she said she would schedule me with Duke¡¯s visual occupational therapists to get visual device aids and to learn to deal with my vision loss. She also mentioned that they would work with me to assess my driving ability. That was devastating to hear. However, I am trying to remain positive since I have improving vision. Although, I am suffering from a slight tear that runs diagonally through my left eye, only little spots of vision in my right, and I suffer from contrast, glare, blurry vision, central acuity and visual field loss. Has anyone tried amber glasses? I tried some tinted glasses at the store and they seemed to really help with the glare and contrast. I wear glasses already, so I will need to hold off until a new Rx. My progressive lenses are not very effective at this time.
that felt good to unload. I am so happy I found this group. It is so isolating trying to describe what I am experiencing. No one understands. I have even taken photos with my phone and edited them with gray and white streaks to show what my works looks like, but they still have a hard time grasping it.
|
Hi sorry to hear about your naion diagnosis I am 42 and was diagnosed at 40 with naion in my right eye. Also no known cause for mine I do not have high blood pressure, cholesterol, or diabetes. The only thing I can think of is I had a severe case of covid that landed me in the hospital on oxygen for almost a week and this happened the week or so before my naion event. My right eye as far as I can tell has not recovered any vision but I am due for a visit with my neuro opthalmologist soon.?
On Sat, Feb 11, 2023, 11:50 AM < bdc@...> wrote: hi everyone...i just joined yesterday.? i am very new to NAION...i am a 48 year old female and on dec 4th i discovered that i my vision was very blurry.? it took a few weeks, but the dr diagnosed me w/ NAION in both eyes. which i was told was pretty rare.
? i had 3 days of IV steroids in the hospital and had 2 months of oral steroids. the swelling has gone down some but my eye sight is currently 20/400 in both eyes.? this has absolutely changed my life...i can't drive or work.? ?reading glasses help me see a little better with my left eye.? my right eye only see's blurriness and my refraction test is a zero, so no corrective lens will help.? i'm so scared because the more research i do, the more i realize that i'm probably not going to get any better.? i know this is a waiting game and i just need to be patient but it's so hard.? it also scares me because they are not certain why this happened to me so it i don't know if this will happen again and loose more sight.??
|
Hello Caroline, it is SO GOOD you have regained most of the vision in your left eye!? I have seen Dr. Boisvert at Duke.? Is that who you are seeing?
Diane Keasler
Life is the school, love is the lesson.
On Saturday, March 18, 2023 at 11:57:02 PM EDT, Caroline J <gcarolinejoyce@...> wrote:
Hi Brandi and Karl,
I am 50, and I have also been diagnosed with bilateral NAION. And Karl, I live in Greenville, NC! It started in February with a gray curtain in the top half of my left eye. Since my right eye compensated for the vision loss, I was able to function, but I had a sequential event 15 days later. My vision was totally blocked with something similar to light gray wool spread across my entire field of vision. It took about five days for it to set in, and all of a sudden, I couldn¡¯t drive or see my computer screen. In February, my doctors in Eastern NC had never seen this in a patient and were speculating MS, but I was referred to Duke and my NO diagnosed me immediately with a ¡°disc at risk¡± in my left eye and a normal size disk in my right. I have been on a baby aspirin for the past five years, and I still suffered from two concurrent episodes. While the MRI and lab work show no other risk factors, I am scheduled for a sleep study next week. My doctor would not put me on steroids due to side effect risks and no proof that they work and said that it will be 6-8 weeks for the swelling to go down. Fortunately, I have regained much of my vision in my left eye since 2 weeks after the episode. Similarly, I have begun losing the gray wool in my right eye, but I still cannot see a face or read anything with my right eye. I can tell my brain is working hard with trying to make sense of what I am seeing: flashes of light, intricate patterns in the white black space, kaleidoscope of colors when I close my eyes¡As for my stereoscopic vision, I simply cannot see the left side of the faces of my family members at the table. For the first time, I was able to see their entire faces three days ago when I was in touch proximity.
At night, I have awakened in a panic on a few occasions since that is how I first lost my sight with my right eye. It is scary. I feel I am in the prime of my career and, all of the sudden, I am taking FMLA for at least a month. When I see my NO in a few weeks, she said she would schedule me with Duke¡¯s visual occupational therapists to get visual device aids and to learn to deal with my vision loss. She also mentioned that they would work with me to assess my driving ability. That was devastating to hear. However, I am trying to remain positive since I have improving vision. Although, I am suffering from a slight tear that runs diagonally through my left eye, only little spots of vision in my right, and I suffer from contrast, glare, blurry vision, central acuity and visual field loss. Has anyone tried amber glasses? I tried some tinted glasses at the store and they seemed to really help with the glare and contrast. I wear glasses already, so I will need to hold off until a new Rx. My progressive lenses are not very effective at this time.
that felt good to unload. I am so happy I found this group. It is so isolating trying to describe what I am experiencing. No one understands. I have even taken photos with my phone and edited them with gray and white streaks to show what my works looks like, but they still have a hard time grasping it.
|
I use the Cacoon twilight and night glasses.? I can still drive
but nighttime is tough.? The glasses help me.? I also use them
sometime to watch TV particularly if the image is dark.? I also
garden with them if the light is low.
On 3/18/2023 8:57 PM, Caroline J wrote:
toggle quoted message
Show quoted text
Hi Brandi and Karl,
I am 50, and I have also been diagnosed with bilateral NAION.
And Karl, I live in Greenville, NC! It started in February with
a gray curtain in the top half of my left eye. Since my right
eye compensated for the vision loss, I was able to function, but
I had a sequential event 15 days later. My vision was totally
blocked with something similar to light gray wool spread across
my entire field of vision. It took about five days for it to set
in, and all of a sudden, I couldn¡¯t drive or see my computer
screen. In February, my doctors in Eastern NC had never seen
this in a patient and were speculating MS, but I was referred to
Duke and my NO diagnosed me immediately with a ¡°disc at risk¡± in
my left eye and a normal size disk in my right. I have been on a
baby aspirin for the past five years, and I still suffered from
two concurrent episodes. While the MRI and lab work show no
other risk factors, I am scheduled for a sleep study next week.
My doctor would not put me on steroids due to side effect risks
and no proof that they work and said that it will be 6-8 weeks
for the swelling to go down. Fortunately, I have regained much
of my vision in my left eye since 2 weeks after the episode.
Similarly, I have begun losing the gray wool in my right eye,
but I still cannot see a face or read anything with my right
eye. I can tell my brain is working hard with trying to make
sense of what I am seeing: flashes of light, intricate patterns
in the white black space, kaleidoscope of colors when I close my
eyes¡As for my stereoscopic vision, I simply cannot see the left
side of the faces of my family members at the table. For the
first time, I was able to see their entire faces three days ago
when I was in touch proximity.
At night, I have awakened in a panic on a few occasions since
that is how I first lost my sight with my right eye. It is
scary. I feel I am in the prime of my career and, all of the
sudden, I am taking FMLA for at least a month. When I see my NO
in a few weeks, she said she would schedule me with Duke¡¯s
visual occupational therapists to get visual device aids and to
learn to deal with my vision loss. She also mentioned that they
would work with me to assess my driving ability. That was
devastating to hear. However, I am trying to remain positive
since I have improving vision. Although, I am suffering from a
slight tear that runs diagonally through my left eye, only
little spots of vision in my right, and I suffer from contrast,
glare, blurry vision, central acuity and visual field loss. Has
anyone tried amber glasses? I tried some tinted glasses at the
store and they seemed to really help with the glare and
contrast. I wear glasses already, so I will need to hold off
until a new Rx. My progressive lenses are not very effective at
this time.
that felt good to unload. I am so happy I found this group. It
is so isolating trying to describe what I am experiencing. No
one understands. I have even taken photos with my phone and
edited them with gray and white streaks to show what my works
looks like, but they still have a hard time grasping it.
|
Hi Brandi and Karl,
I am 50, and I have also been diagnosed with bilateral NAION. And Karl, I live in Greenville, NC! It started in February with a gray curtain in the top half of my left eye. Since my right eye compensated for the vision loss, I was able to function, but I had a sequential event 15 days later. My vision was totally blocked with something similar to light gray wool spread across my entire field of vision. It took about five days for it to set in, and all of a sudden, I couldn¡¯t drive or see my computer screen. In February, my doctors in Eastern NC had never seen this in a patient and were speculating MS, but I was referred to Duke and my NO diagnosed me immediately with a ¡°disc at risk¡± in my left eye and a normal size disk in my right. I have been on a baby aspirin for the past five years, and I still suffered from two concurrent episodes. While the MRI and lab work show no other risk factors, I am scheduled for a sleep study next week. My doctor would not put me on steroids due to side effect risks and no proof that they work and said that it will be 6-8 weeks for the swelling to go down. Fortunately, I have regained much of my vision in my left eye since 2 weeks after the episode. Similarly, I have begun losing the gray wool in my right eye, but I still cannot see a face or read anything with my right eye. I can tell my brain is working hard with trying to make sense of what I am seeing: flashes of light, intricate patterns in the white black space, kaleidoscope of colors when I close my eyes¡As for my stereoscopic vision, I simply cannot see the left side of the faces of my family members at the table. For the first time, I was able to see their entire faces three days ago when I was in touch proximity.
At night, I have awakened in a panic on a few occasions since that is how I first lost my sight with my right eye. It is scary. I feel I am in the prime of my career and, all of the sudden, I am taking FMLA for at least a month. When I see my NO in a few weeks, she said she would schedule me with Duke¡¯s visual occupational therapists to get visual device aids and to learn to deal with my vision loss. She also mentioned that they would work with me to assess my driving ability. That was devastating to hear. However, I am trying to remain positive since I have improving vision. Although, I am suffering from a slight tear that runs diagonally through my left eye, only little spots of vision in my right, and I suffer from contrast, glare, blurry vision, central acuity and visual field loss. Has anyone tried amber glasses? I tried some tinted glasses at the store and they seemed to really help with the glare and contrast. I wear glasses already, so I will need to hold off until a new Rx. My progressive lenses are not very effective at this time.
that felt good to unload. I am so happy I found this group. It is so isolating trying to describe what I am experiencing. No one understands. I have even taken photos with my phone and edited them with gray and white streaks to show what my works looks like, but they still have a hard time grasping it.
|
fyi: Stanford U. Researchers Build $400 Self-Navigating Smart Cane
|
Re: Immunotherapy induced NAION- Migraines
Thank you so much. Why is it that NO's don't know anything about this? My headache MD at Weil Cornell said he is going to speak to my NO to look into doing a clinical trail.
Hi All,?
I have had right sided migraines with and without aura's since I started BCP in my 20's.? My NAION is in my right eye.?The headaches (HA's) have lessened after menopause (I am now 61) but still persist.? Aura's usually not present anymore.? Anecdotally, while hiking on vacation 9 days before my NAION episode, I experienced a bad altitude HA.? The HA resolved but did persist intermittently for the next several days but not at the same intensity.
?
?
2 days before my NAION episode I did note some blurring/rippling in my visual field that resolved.? It is this area that is now affected permanently so in hindsight something was already going on within my eye.? On the day of my NAION episode I had a massage.? While prone with my head was resting in the cradle, I suffered eye pain/pressure in my right eye which resolved with repositioning.? (I've had massages for over 30 years due to a back issue and never experienced eye pain with a massage prior to that day).? That evening, several hours later, I noted the visual defect in my right inner eye that persists to this day.? My ophthalmologist told me there may be a connection between crowded optic disc and venous congestion leading to compartment syndrome and NAION but most of the time the cause of our NAION is unknown (as we all know).? He?advised me to avoid laying my head in a massage cradle and to try and avoid exercises when I work out that would have the blood pooling in my head.? I think that is a reasonable suggestion.? He did suggest that I may want to pursue better control of my HA¡¯s.??
?
Something upset the eye¡¯s autoregulation, I will never know for sure.? I suspect it was a combination of many factors that led to my NAION episode, a "perfect storm" so to speak.? I too suspect there is a relationship between have migraine HA and NAION, perhaps it sets us up for developing NAION (along with our crowded eye structure).? Hopefully there will be more research in this area.???
|
Re: NAION and vaccinations
Hi Don,
I've had it and had no ill effects.
My step father had shingles in his 70's and it was very nasty.?
|
Re: NAION and vaccinations
I has shingles shots with no negative reaction other than a sore
arm.
On 2/27/2023 5:08 AM, Don White wrote:
toggle quoted message
Show quoted text
Hello everyone,
I had my NAION ?event May of 2022, and after many very difficult
months I am starting to settle into my new norm.?
My GP has recommended getting the shingles vaccine and when I
questioned the possibility of an adverse reaction, he said it
could be worse if I got shingles and affected my one good eye. Has
anyone gotten the
shingles vaccination and how did you fair?
Thank you for anyone¡¯s input.
Don
|
Re: NAION and vaccinations
Not heard anything on shingles
|
Re: NAION and vaccinations
Hi Don.? I am so sorry to hear about your difficult time, I agree it does take a while to adjust to the new norm.? I had 2 doses of the Shingrix vaccine back in 2019.? It was prior to my NAION episode in 11/22.? I did just fine.??
|
Louie
Caroline J