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Expanded Topics Messages
Date
Re: New Member

 

Thanks Clare. I did have steroids once my attack happened. I was placed in hospital where I had a transfusion of steroids. Then a two week tablet course of them when I got home. My attack was due to sleep apnea so I don¡¯t take the aspirin. Thank you for letting me know. I take daily eye vitamins?

On Sat, 31 Dec 2022 at 1:09 am, Deane Williams <pyroartist@...> wrote:
Hello Chiarina,
?The meds Clare described are baby aspirin (81 mg, enteric coated is usual) and "oral steroids" in the USA are usually prednisone. In some parts of the world aspirin is still a trademarked drug so the generic, chemical name is ASA for acetylsalicylic acid. The aspirin is usually taken one a day or every other day to help prevent future attacks. The steroids are only used initially.


On 12/30/2022 12:03 AM, Chiarina Blake wrote:
Hi Clare. You mentioned two meds that you are taking or going to take. What are they? I don¡¯t understand. If it makes you feel any better, my NAION occurred in my one only good eye as the other was bad since childhood! Did it rock my world? You bet! Please could you get back to me regarding what you take thanks?

On Fri, 30 Dec 2022 at 12:55 am, Clare C via <chcommon=[email protected]> wrote:

Hello,? ?

I am a new member to this group.? My vision loss happened in my right lower eye in early November.? Although this is my first post, it is certainly not the first time I have visited this site.? I found the information/tips/suggestions on handling the vision loss and how best to preserve the vision in my remaining ¡°good¡± eye most helpful. The discussions on the emotional impact of this diagnosis was especially helpful as the diagnosis caused me much anxiety.? I'd never heard of NAION.??

Risk factors I have include ¡°Disc at Risk¡± in my left eye, headaches, and suspected sleep apnea (testing next week). Anecdotally, we vacationed for 4 days at an altitude of 7000-9000 ft (I live below 1000 ft) a week before my attack.? I¡¯ve?never stayed at that?high of an altitude for that length of time before and I suffered a bad altitude headache while there.? I know there are many theories to the cause of NAION but I can¡¯t help but think there is a relationship between the altitude, my possible sleep apnea, my HA and my NAION attack.??

I was treated with oral steroids?and I am taking a baby ASA per day.? I do plan to ask my ophthalmologist about starting bromodine gtts.? I read the discussion and research article on citicoline but I am unsure yet if I will try?

Thanks again for the support during those difficult first weeks.? ?

Clare
New Member-meds

 

Hi Chiarina, Deanne and group.??

First, thank you Deanne for explaining about the oral steroids and baby Aspirin. Sorry for the acronyms, I'm a retired nurse and often forget to spell things out!??
I did take oral prednisone after my initial diagnoses of NAION.? I'm a well-controlled asthmatic and familiar with prednisone as I take it for occasional exacerbations.? ??

Agree with Chiarina that NAION rocked my world, but I am getting there and starting to adjust.? I am so sorry it affected your "good eye" Chiarina.? ?Thanks to the information on this site, I am much more careful about taking medications and especially ones before bedtime.? I am 61 years old and would describe myself as active and fit.?The only cardiovascular risk factors I have is high cholesterol for which I take a statin.? My ¡°numbers¡± are great on the medication.? I don¡¯t smoke, have diabetes or hypertension, I have a healthy BMI and exercise frequently.? You will find me walking the golf course 2-3 times a week playing golf except in the winter.? Hopefully I can adjust and can continue this pastime.? My friends have said they'll help me find my ball!?

The other two meds I mentioned in my initial post are Brimonidine eye drops (sorry for the typo in my first post) and the supplement Citicoline. Nothing will bring back our vision but I saw that many are prescribed brimonidine eye gtts by their ophthalmologist/NO.? My understanding is that it lowers intraocular pressure and possibly provides some protection to the optic nerve.? See Aloke¡¯s post from 10/12/21 #320. ?I will see what my MD says.??

Citicoline is a supplement that you can take in liquid or pill form.? It was also discussed extensively on this site.? I am unsure if I will try that supplement but if I do, will take early in the morning as it can cause hypotension.? See Adam's post for 10/6/21 #300 that references the studies.

FYI, due to family history I already take?fish oil (my mom had coronary artery disease) and I take OcuVite due to my father¡¯s history of macular degeneration.? ?Hope this helps clear up any confusion.? ?I appreciate everyone's words of encouragement.??

Clare
Re: What do you see?

 

My central vision in the left eye is translucent. It¡¯s like looking through a fine mesh screen. ? It affects about 1/3 of my vision in that eye. ?I can not read anything with my right eye closed. ?I¡¯ve had a retina tear with this eye and vitreous detachment on both. ?The vitreous procedure led to an astigmatism in my right eye. ?The surgeries have also led to pretty bad dry eye condition which also affects my vision. ?I¡¯ve been going to a dry eye clinic and have received some improvement and am retesting the right eye in two weeks as the astigmatism correction in my right eye is apparently wrong or it has changed since the last one in February. Although I do many things right handed, I was left eye dominant all my life and apparently my right eye isn¡¯t assuming the lead role like it does with most everybody. ?
Re: New Member

 

¿ªÔÆÌåÓý

Hello Chiarina,
?The meds Clare described are baby aspirin (81 mg, enteric coated is usual) and "oral steroids" in the USA are usually prednisone. In some parts of the world aspirin is still a trademarked drug so the generic, chemical name is ASA for acetylsalicylic acid. The aspirin is usually taken one a day or every other day to help prevent future attacks. The steroids are only used initially.


On 12/30/2022 12:03 AM, Chiarina Blake wrote:

Hi Clare. You mentioned two meds that you are taking or going to take. What are they? I don¡¯t understand. If it makes you feel any better, my NAION occurred in my one only good eye as the other was bad since childhood! Did it rock my world? You bet! Please could you get back to me regarding what you take thanks?

On Fri, 30 Dec 2022 at 12:55 am, Clare C via <chcommon=[email protected]> wrote:

Hello,? ?

I am a new member to this group.? My vision loss happened in my right lower eye in early November.? Although this is my first post, it is certainly not the first time I have visited this site.? I found the information/tips/suggestions on handling the vision loss and how best to preserve the vision in my remaining ¡°good¡± eye most helpful. The discussions on the emotional impact of this diagnosis was especially helpful as the diagnosis caused me much anxiety.? I'd never heard of NAION.??

Risk factors I have include ¡°Disc at Risk¡± in my left eye, headaches, and suspected sleep apnea (testing next week). Anecdotally, we vacationed for 4 days at an altitude of 7000-9000 ft (I live below 1000 ft) a week before my attack.? I¡¯ve?never stayed at that?high of an altitude for that length of time before and I suffered a bad altitude headache while there.? I know there are many theories to the cause of NAION but I can¡¯t help but think there is a relationship between the altitude, my possible sleep apnea, my HA and my NAION attack.??

I was treated with oral steroids?and I am taking a baby ASA per day.? I do plan to ask my ophthalmologist about starting bromodine gtts.? I read the discussion and research article on citicoline but I am unsure yet if I will try?

Thanks again for the support during those difficult first weeks.? ?

Clare
What do you see?

 

I was just wondering what can you see? I never had good vision in my left eye and 2 years ago, my central vision was effected ?by sleep apnea related NAION. My vision acquity with glasses is 15/6 and 24/6 without glasses. I can read using +2 magnification and can cross roads, walk around cook, do all normal things unaided. I only drive in my local area. I can see colour although the further away it is the less colour I see. Contrast is difficult and looking at fine detail is very hard. I would describe my vision as being like looking through a dirty window? I find it hard to recognise faces from a distance which is funny because I wave to so many random people! Sub titles on the tv are okay but take me a little longer to read so sometimes I miss them. What about you guys??
Re: New Member

 

Hi Clare. You mentioned two meds that you are taking or going to take. What are they? I don¡¯t understand. If it makes you feel any better, my NAION occurred in my one only good eye as the other was bad since childhood! Did it rock my world? You bet! Please could you get back to me regarding what you take thanks?

On Fri, 30 Dec 2022 at 12:55 am, Clare C via <chcommon=[email protected]> wrote:

Hello,? ?

I am a new member to this group.? My vision loss happened in my right lower eye in early November.? Although this is my first post, it is certainly not the first time I have visited this site.? I found the information/tips/suggestions on handling the vision loss and how best to preserve the vision in my remaining ¡°good¡± eye most helpful. The discussions on the emotional impact of this diagnosis was especially helpful as the diagnosis caused me much anxiety.? I'd never heard of NAION.??

Risk factors I have include ¡°Disc at Risk¡± in my left eye, headaches, and suspected sleep apnea (testing next week). Anecdotally, we vacationed for 4 days at an altitude of 7000-9000 ft (I live below 1000 ft) a week before my attack.? I¡¯ve?never stayed at that?high of an altitude for that length of time before and I suffered a bad altitude headache while there.? I know there are many theories to the cause of NAION but I can¡¯t help but think there is a relationship between the altitude, my possible sleep apnea, my HA and my NAION attack.??

I was treated with oral steroids?and I am taking a baby ASA per day.? I do plan to ask my ophthalmologist about starting bromodine gtts.? I read the discussion and research article on citicoline but I am unsure yet if I will try?

Thanks again for the support during those difficult first weeks.? ?

Clare
Info on COVID and NAION

Russ Poter
 

My $0.02: when the first VAXXs were released .. I had a choice .. (1) get the shot or (2) continue to hide inside, and maybe go insane.? I took option number 1.

----













Essay about NAION and living



Links in the message (4)
Re: low light cacoons

 

I like the green mirror ones. Best contrast, clarify, blocking of blue light and glare, IMHO. Even works at night, if glare from bright white LED street lights becomes too much.?

I used glasses with Raspberry lenses initially, but didn¡¯t like the reddish tint of everything (my vision has areas of reddish fog as it is).?

I use the Lemon ones for low light and indoor situations, sometimes.?

It¡¯s very individual.?


On Thu, Dec 29, 2022 at 6:13 PM Russ Poter via <russpoter=[email protected]> wrote:
some like yellow .. other orange .. I like green.? Depends on a lot of factors.? Try all of them, at sunglass shop.

On Wednesday, December 28, 2022 at 11:54:04 PM EST, Diane Keasler via <dlkeasler=[email protected]> wrote:


Is it the yellow lens that you like?? If not, which lens are working for you?? Thanks!

Re: New Member / COVID

Russ Poter
 

possible .. lot of factors can be involved -- weight, smoking, diabetes. And no medicine is perfect.

On Thursday, December 29, 2022 at 11:20:18 AM EST, Jareer Uri <jareeruri.realty@...> wrote:


The altitude that you mentioned is interesting I had my attack last year about a week after I got out of the hospital due to severe covid and oxygen level dipping to the 80's maybe that has something to.do with it.


On Thu, Dec 29, 2022, 8:55 AM Clare C via <chcommon=[email protected]> wrote:

Hello,? ?

I am a new member to this group.? My vision loss happened in my right lower eye in early November.? Although this is my first post, it is certainly not the first time I have visited this site.? I found the information/tips/suggestions on handling the vision loss and how best to preserve the vision in my remaining ¡°good¡± eye most helpful. The discussions on the emotional impact of this diagnosis was especially helpful as the diagnosis caused me much anxiety.? I'd never heard of NAION.??

Risk factors I have include ¡°Disc at Risk¡± in my left eye, headaches, and suspected sleep apnea (testing next week). Anecdotally, we vacationed for 4 days at an altitude of 7000-9000 ft (I live below 1000 ft) a week before my attack.? I¡¯ve?never stayed at that?high of an altitude for that length of time before and I suffered a bad altitude headache while there.? I know there are many theories to the cause of NAION but I can¡¯t help but think there is a relationship between the altitude, my possible sleep apnea, my HA and my NAION attack.??

I was treated with oral steroids?and I am taking a baby ASA per day.? I do plan to ask my ophthalmologist about starting bromodine gtts.? I read the discussion and research article on citicoline but I am unsure yet if I will try?

Thanks again for the support during those difficult first weeks.? ?

Clare
Re: New Member / book

Russ Poter
 

NYTimes top writer. Friend of Oprah.? Suddenly attacked by NAION.? How he adapted.





On Thursday, December 29, 2022 at 10:18:14 AM EST, martin ferguson <susanandmartin080@...> wrote:


Hi Claire
Like you I am new to all this. I was diagnosed in August with NAION in my left eye. It¡¯s very traumatic. I had my initial tests in Eye Casualty and further visual field testing and now await an appointment with the consultant. My GP also tested BP and cholesterol. I¡¯m now on a statin and a baby aspirin a day.
?I feel very alone and frightened at times. Nobody I know has ever heard of this condition.?
Since being diagnosed in August I have now discovered I have a fairly serious heart condition and my cardiologist has put me on bp medication prior to surgery. I¡¯m so worried as Low blood pressure seems to be one of the causes. I sound quite a crock but in reality I am a very active healthy ( at least I thought I was) 67 year old.?


On 29 Dec 2022, at 13:55, Clare C via groups.io <chcommon@...> wrote:

?

Hello,? ?

I am a new member to this group.? My vision loss happened in my right lower eye in early November.? Although this is my first post, it is certainly not the first time I have visited this site.? I found the information/tips/suggestions on handling the vision loss and how best to preserve the vision in my remaining ¡°good¡± eye most helpful. The discussions on the emotional impact of this diagnosis was especially helpful as the diagnosis caused me much anxiety.? I'd never heard of NAION.??

Risk factors I have include ¡°Disc at Risk¡± in my left eye, headaches, and suspected sleep apnea (testing next week). Anecdotally, we vacationed for 4 days at an altitude of 7000-9000 ft (I live below 1000 ft) a week before my attack.? I¡¯ve?never stayed at that?high of an altitude for that length of time before and I suffered a bad altitude headache while there.? I know there are many theories to the cause of NAION but I can¡¯t help but think there is a relationship between the altitude, my possible sleep apnea, my HA and my NAION attack.??

I was treated with oral steroids?and I am taking a baby ASA per day.? I do plan to ask my ophthalmologist about starting bromodine gtts.? I read the discussion and research article on citicoline but I am unsure yet if I will try?

Thanks again for the support during those difficult first weeks.? ?

Clare
Re: New Member

 

Greetings and Feliz A?o Nuevo from Costa Rica to the new members of this group who posted today.? I seldom post, but read those of others.? My episode, only in the left eye, occurred about 35 years ago.? Like others commented today, my ophthalmologist, a longtime friend, had no idea what my problem was, and sent me to another specialist.? He diagnosed it as something (I forget what) that turned out to be wrong, and then referred me to yet another specialist, a neuro-optho, who finally got it right.?

Bottom line:? Many doctors have no experience with this anomaly.? That's still the situation today,? Fortunately, at that time, I was living in a large metro area (D.C.) and with the knowledge of Doc #3, I gained the confidence to begin a normal life adjusting to my situation.? (I'll never forget how that Doc used me as a model for all his students to study -- about 10 of them -- in his office one day each peering into my eye, as he was a professor at one of D.C.'s med schools! I should have charged him for MY services just like he was charging me for HIS!).? ?

That doc 35 years ago said I should try using low-dose aspirin, and hope for the best.? No one has ever convinced me that even today there is any better treatment available.? I've adjusted just fine, although I still tend to misjudge distances on my left side and always have bruises on my left arm as a result.? We do have an outstanding N.O. here in Costa Rica who does understand NAION!? He has confirmed to me that at my age (now in my 80's) my optic nerves have stabilized and there is zero chance of any recurrence.? Puravida.? joe

On Thu, Dec 29, 2022 at 10:20 AM Jareer Uri <jareeruri.realty@...> wrote:
The altitude that you mentioned is interesting I had my attack last year about a week after I got out of the hospital due to severe covid and oxygen level dipping to the 80's maybe that has something to.do with it.

On Thu, Dec 29, 2022, 8:55 AM Clare C via <chcommon=[email protected]> wrote:

Hello,? ?

I am a new member to this group.? My vision loss happened in my right lower eye in early November.? Although this is my first post, it is certainly not the first time I have visited this site.? I found the information/tips/suggestions on handling the vision loss and how best to preserve the vision in my remaining ¡°good¡± eye most helpful. The discussions on the emotional impact of this diagnosis was especially helpful as the diagnosis caused me much anxiety.? I'd never heard of NAION.??

Risk factors I have include ¡°Disc at Risk¡± in my left eye, headaches, and suspected sleep apnea (testing next week). Anecdotally, we vacationed for 4 days at an altitude of 7000-9000 ft (I live below 1000 ft) a week before my attack.? I¡¯ve?never stayed at that?high of an altitude for that length of time before and I suffered a bad altitude headache while there.? I know there are many theories to the cause of NAION but I can¡¯t help but think there is a relationship between the altitude, my possible sleep apnea, my HA and my NAION attack.??

I was treated with oral steroids?and I am taking a baby ASA per day.? I do plan to ask my ophthalmologist about starting bromodine gtts.? I read the discussion and research article on citicoline but I am unsure yet if I will try?

Thanks again for the support during those difficult first weeks.? ?

Clare
Re: low light cacoons

Russ Poter
 

some like yellow .. other orange .. I like green.? Depends on a lot of factors.? Try all of them, at sunglass shop.

On Wednesday, December 28, 2022 at 11:54:04 PM EST, Diane Keasler via groups.io <dlkeasler@...> wrote:


Is it the yellow lens that you like?? If not, which lens are working for you?? Thanks!

Re: COVID treatments and blood pressure

Russ Poter
 

all five COVID shots, under M.D. supervision

Flu shot, every year, for 10 years .. A OK

If still concerned .. talk to N.O.

On Wednesday, December 28, 2022 at 10:54:17 PM EST, Louie via groups.io <screwielouietoo@...> wrote:


I have never heard anything about COVID shots?lowering blood pressure. I have had all of the Madera?shots and boosters with no side effects.?I have had?the flu shot every year for the past 20?years. Lou


Screwie Louie¡¯s iPhone??

On Wednesday, December 28, 2022, 10:33 PM, Diane Keasler via groups.io <dlkeasler@...> wrote:

Does anyone know if there are any COVID treatments to be avoided due to their effects on blood pressure?

Re: NAION Treatment

Russ Poter
 

1/ I'd ask for written explanation of rationale involved.

2/ I'd think about 2nd opinion

3/ What has your N.O. said about this?

IMHO .. UPMC is avg OK .. lot of different units .. unsure of quality


On Wednesday, December 28, 2022 at 04:16:44 PM EST, Louie via groups.io <screwielouietoo@...> wrote:


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.?

On Wed, Dec 28, 2022, 1:38 PM Joe Tatarek <Joetatarek@...> wrote:
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
Re: New Member

 

The altitude that you mentioned is interesting I had my attack last year about a week after I got out of the hospital due to severe covid and oxygen level dipping to the 80's maybe that has something to.do with it.


On Thu, Dec 29, 2022, 8:55 AM Clare C via <chcommon=[email protected]> wrote:

Hello,? ?

I am a new member to this group.? My vision loss happened in my right lower eye in early November.? Although this is my first post, it is certainly not the first time I have visited this site.? I found the information/tips/suggestions on handling the vision loss and how best to preserve the vision in my remaining ¡°good¡± eye most helpful. The discussions on the emotional impact of this diagnosis was especially helpful as the diagnosis caused me much anxiety.? I'd never heard of NAION.??

Risk factors I have include ¡°Disc at Risk¡± in my left eye, headaches, and suspected sleep apnea (testing next week). Anecdotally, we vacationed for 4 days at an altitude of 7000-9000 ft (I live below 1000 ft) a week before my attack.? I¡¯ve?never stayed at that?high of an altitude for that length of time before and I suffered a bad altitude headache while there.? I know there are many theories to the cause of NAION but I can¡¯t help but think there is a relationship between the altitude, my possible sleep apnea, my HA and my NAION attack.??

I was treated with oral steroids?and I am taking a baby ASA per day.? I do plan to ask my ophthalmologist about starting bromodine gtts.? I read the discussion and research article on citicoline but I am unsure yet if I will try?

Thanks again for the support during those difficult first weeks.? ?

Clare
Re: New Member

 

¿ªÔÆÌåÓý

Hi Claire
Like you I am new to all this. I was diagnosed in August with NAION in my left eye. It¡¯s very traumatic. I had my initial tests in Eye Casualty and further visual field testing and now await an appointment with the consultant. My GP also tested BP and cholesterol. I¡¯m now on a statin and a baby aspirin a day.
?I feel very alone and frightened at times. Nobody I know has ever heard of this condition.?
Since being diagnosed in August I have now discovered I have a fairly serious heart condition and my cardiologist has put me on bp medication prior to surgery. I¡¯m so worried as Low blood pressure seems to be one of the causes. I sound quite a crock but in reality I am a very active healthy ( at least I thought I was) 67 year old.?


On 29 Dec 2022, at 13:55, Clare C via groups.io <chcommon@...> wrote:

?

Hello,? ?

I am a new member to this group.? My vision loss happened in my right lower eye in early November.? Although this is my first post, it is certainly not the first time I have visited this site.? I found the information/tips/suggestions on handling the vision loss and how best to preserve the vision in my remaining ¡°good¡± eye most helpful. The discussions on the emotional impact of this diagnosis was especially helpful as the diagnosis caused me much anxiety.? I'd never heard of NAION.??

Risk factors I have include ¡°Disc at Risk¡± in my left eye, headaches, and suspected sleep apnea (testing next week). Anecdotally, we vacationed for 4 days at an altitude of 7000-9000 ft (I live below 1000 ft) a week before my attack.? I¡¯ve?never stayed at that?high of an altitude for that length of time before and I suffered a bad altitude headache while there.? I know there are many theories to the cause of NAION but I can¡¯t help but think there is a relationship between the altitude, my possible sleep apnea, my HA and my NAION attack.??

I was treated with oral steroids?and I am taking a baby ASA per day.? I do plan to ask my ophthalmologist about starting bromodine gtts.? I read the discussion and research article on citicoline but I am unsure yet if I will try?

Thanks again for the support during those difficult first weeks.? ?

Clare
New Member

 

Hello,? ?

I am a new member to this group.? My vision loss happened in my right lower eye in early November.? Although this is my first post, it is certainly not the first time I have visited this site.? I found the information/tips/suggestions on handling the vision loss and how best to preserve the vision in my remaining ¡°good¡± eye most helpful. The discussions on the emotional impact of this diagnosis was especially helpful as the diagnosis caused me much anxiety.? I'd never heard of NAION.??

Risk factors I have include ¡°Disc at Risk¡± in my left eye, headaches, and suspected sleep apnea (testing next week). Anecdotally, we vacationed for 4 days at an altitude of 7000-9000 ft (I live below 1000 ft) a week before my attack.? I¡¯ve?never stayed at that?high of an altitude for that length of time before and I suffered a bad altitude headache while there.? I know there are many theories to the cause of NAION but I can¡¯t help but think there is a relationship between the altitude, my possible sleep apnea, my HA and my NAION attack.??

I was treated with oral steroids?and I am taking a baby ASA per day.? I do plan to ask my ophthalmologist about starting bromodine gtts.? I read the discussion and research article on citicoline but I am unsure yet if I will try?

Thanks again for the support during those difficult first weeks.? ?

Clare
Re: low light cacoons

 

Is it the yellow lens that you like?? If not, which lens are working for you?? Thanks!
Re: COVID treatments and blood pressure

 

I have never heard anything about COVID shots?lowering blood pressure. I have had all of the Madera?shots and boosters with no side effects.?I have had?the flu shot every year for the past 20?years. Lou


Screwie Louie¡¯s iPhone??

On Wednesday, December 28, 2022, 10:33 PM, Diane Keasler via groups.io <dlkeasler@...> wrote:

Does anyone know if there are any COVID treatments to be avoided due to their effects on blood pressure?

COVID treatments and blood pressure

 

Does anyone know if there are any COVID treatments to be avoided due to their effects on blood pressure?
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