Re: Good news towards retina regrowth!
Thanks for the details, Adam.
Diane Keasler
Life is the school, love is the lesson.
On Tuesday, January 10, 2023 at 08:38:41 PM EST, Amy + Adam via groups.io <alf.acs@...> wrote:
While this is a nice result, I do not think it is yet on a path for human trials. Organoids are really useful for studying normal development. Previously it was shown that retinal organoids make three cell types that are in a retina. Here they show that these cell types connect to each other. ? But this is still very far away from being an operational retina. Real retinas have specific connections between the photoreceptors and multiple types of interneurons; the interneurons in turn have complex connections to each other, and to the retinal ganglion cells. ? In addition, it is a big problem to get the retinal ganglion cells to grow axons far into the brain to make the right connections. That is not addressed in this paper at all.? Also, we NIAON folk are missing some of our retinal ganglion cells¡ªI think we still have the interneurons and photoreceptors. ?? ? Finally, it is probably not wise to inject human embryonic stem cells into people. For one thing, they are from another person (immune response) For another, they are designed to have a lot of developmental plasticity (so you have to worry about them differentiating into unwanted cell types, including cancer). ? So while this shows that retinal organoids are a good system for learning about normal development, this is still very far from a therapy. ? Please think very carefully before participating in stem cell clinical trials. There is a bad history here, for eye disease in particular. ? ? Adam ?
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From: [email protected] < [email protected]> On Behalf Of Deane Williams Sent: Monday, January 09, 2023 8:54 PM To: [email protected]Subject: Re: [NAION] Good news towards retina regrowth! ? No, not available. Maybe human trials in the next few years. On 1/9/2023 8:46 PM, carlo maglione via groups.io wrote: So where can I have this done? Is this treatment available at this time?
On Monday, January 9, 2023, 12:09 PM, Deane Williams <pyroartist@...> wrote: From a January 4th paper comes good news towards eye regeneration. They do not specifically mention the optic nerve but they may be working towards that as they mention glaucoma. We may be another step closer. Dean As we mammals get older, many?of us start to lose our eyesight because the neurons in our retinas degenerate.? Our retinal ganglion cells might get attacked by glaucoma, or our rods and cones (photoreceptors) might get eroded by macular degeneration or retinitis pigmentosa.? Somewhere in the course of evolution, we lost our ability to regenerate those kinds of cells, just like we lost the ability to regenerate limbs.? Once they¡¯re gone, they¡¯re gone. But we humans did develop some other things really well:?the ability to use reason and the desire to sustain ourselves.? And those attributes have brought us to the verge of making up for some of our evolutionary shortcomings.? It¡¯s amazing enough that grow human stem cells into retinal ¡°organoids¡± ¡ª?little balls that all the different types of cells it takes to make a functioning retina, even organized into the right layers. But now we¡¯ve?learned that if we break up the organoid into individual cells, those cells are?capable of spontaneously forming signal-communicating connections ()?with other retinal cells.? That means that a patient could have their own stem cells grown into retinal cells and applied to their own retina, these new cells could functionally replace the old, and vision could be restored.? No gene therapy required, thanks very much. You can read all about this last hurdle being at the University of Wisconsin labs of Drs. David Gamm and Xinyu Zhao in the January 4 issue of the Proceedings of the National Academy of Sciences. For more info with diagrams and pictures:
?
|
Re: Good news towards retina regrowth!
While this is a nice result, I do not think it is yet on a path for human trials. Organoids are really useful for studying normal development. Previously it was shown that retinal organoids make three cell types that are in a retina. Here they show that these cell types connect to each other. ? But this is still very far away from being an operational retina. Real retinas have specific connections between the photoreceptors and multiple types of interneurons; the interneurons in turn have complex connections to each other, and to the retinal ganglion cells. ? In addition, it is a big problem to get the retinal ganglion cells to grow axons far into the brain to make the right connections. That is not addressed in this paper at all.? Also, we NIAON folk are missing some of our retinal ganglion cells¡ªI think we still have the interneurons and photoreceptors. ?? ? Finally, it is probably not wise to inject human embryonic stem cells into people. For one thing, they are from another person (immune response) For another, they are designed to have a lot of developmental plasticity (so you have to worry about them differentiating into unwanted cell types, including cancer). ? So while this shows that retinal organoids are a good system for learning about normal development, this is still very far from a therapy. ? Please think very carefully before participating in stem cell clinical trials. There is a bad history here, for eye disease in particular. ? ? Adam ?
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Show quoted text
From: [email protected] < [email protected]> On Behalf Of Deane Williams Sent: Monday, January 09, 2023 8:54 PM To: [email protected]Subject: Re: [NAION] Good news towards retina regrowth! ? No, not available. Maybe human trials in the next few years. On 1/9/2023 8:46 PM, carlo maglione via groups.io wrote: So where can I have this done? Is this treatment available at this time?
On Monday, January 9, 2023, 12:09 PM, Deane Williams <pyroartist@...> wrote: From a January 4th paper comes good news towards eye regeneration. They do not specifically mention the optic nerve but they may be working towards that as they mention glaucoma. We may be another step closer. Dean As we mammals get older, many?of us start to lose our eyesight because the neurons in our retinas degenerate.? Our retinal ganglion cells might get attacked by glaucoma, or our rods and cones (photoreceptors) might get eroded by macular degeneration or retinitis pigmentosa.? Somewhere in the course of evolution, we lost our ability to regenerate those kinds of cells, just like we lost the ability to regenerate limbs.? Once they¡¯re gone, they¡¯re gone. But we humans did develop some other things really well:?the ability to use reason and the desire to sustain ourselves.? And those attributes have brought us to the verge of making up for some of our evolutionary shortcomings.? It¡¯s amazing enough that grow human stem cells into retinal ¡°organoids¡± ¡ª?little balls that all the different types of cells it takes to make a functioning retina, even organized into the right layers. But now we¡¯ve?learned that if we break up the organoid into individual cells, those cells are?capable of spontaneously forming signal-communicating connections ()?with other retinal cells.? That means that a patient could have their own stem cells grown into retinal cells and applied to their own retina, these new cells could functionally replace the old, and vision could be restored.? No gene therapy required, thanks very much. You can read all about this last hurdle being at the University of Wisconsin labs of Drs. David Gamm and Xinyu Zhao in the January 4 issue of the Proceedings of the National Academy of Sciences. For more info with diagrams and pictures:
?
|
Re: Good news towards retina regrowth!
No, not available. Maybe human trials in the
next few years.
On 1/9/2023 8:46 PM, carlo maglione via
groups.io wrote:
toggle quoted message
Show quoted text
So where can I have this done? Is this treatment available at this
time?
On Monday, January 9, 2023, 12:09 PM, Deane
Williams <pyroartist@...> wrote:
From a January 4th paper comes good news towards eye
regeneration.
They do not specifically mention the optic nerve but they
may
be working towards that as they mention glaucoma.
We may be another step closer.
Dean
|
Re: Good news towards retina regrowth!
So where can I have this done? Is this treatment available at this time?
toggle quoted message
Show quoted text
On Monday, January 9, 2023, 12:09 PM, Deane Williams <pyroartist@...> wrote:
From a January 4th paper comes good news
towards eye regeneration.
They do not specifically mention the optic nerve but they may
be working towards that as they mention glaucoma.
We may be another step closer.
Dean
|
Good news towards retina regrowth!
From a January 4th paper comes good news
towards eye regeneration.
They do not specifically mention the optic nerve but they may
be working towards that as they mention glaucoma.
We may be another step closer.
Dean
|
FYI: why you should always advise your GP & N.O. about your OTC pharms
Right here ..?
Surgical candidates undergoing anesthesia should be screened universally for cannabis use, new guidelines from the American Society of Regional Anesthesia and Pain Medicine (ASRA Pain Medicine) stated.
Anesthesiologists should ask all patients about the type of cannabis product used, whether it was smoked or ingested, the amount used, how recently it was used, and the frequency of use, reported Shalini Shah, MD, of the University of California Irvine, and colleagues in Regional Anesthesia & Pain Medicineopens in a new tab or window.
Anesthesiologists also should be prepared to possibly change the anesthesia plan or delay surgery, the authors noted. They should let patients know that regular cannabis users may have more pain and nausea after surgery and may need more medications to manage post-surgical pain.
The guidance is the first in the U.S. about cannabis and perioperative management.
|
Re: My Experience with NAION
Very helpful Dr. Gupta. Thank you!
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On Wed, Jan 4, 2023 at 12:38 AM Aloke Gupta via <gaurieyeclinic= [email protected]> wrote:
Dear Michele, Allergy to all antiglaucoma medicines, after you have used them for some time (like one year in your case), are usually due to preservatives in the medicines and not due to the medicine itself. Please find out if preservative free unims are available in your country of Brimonidine eye drops.?
Also, you can try Alaphagan Z (Allergan), which works just as good and has the least concentration of Brimonidine.
Alphagan eye drops: Brimonidine 0.2%, Benzalkonium Chloride as preservative
Alphagan P eye drops: Brimonidine 0.15%,? Stabilized Oxychloro Complex (SOC or Purite) as preservative
Alphagan Z eye drops: Brimonidine 0.1%, Stabilized Oxychloro Complex as preservative.
SOC as a preservative is much better because because it breaks down into Sodium and Chloride ions water and oxygen after coming in contact with eye and therefore less likely to cause irritation or allergy on long term use.
Hope this helps
On Tuesday, 3 January, 2023 at 11:35:47 pm IST, Michele Bunch < bunch.michele@...> wrote:
Thank you Dr. Gupta! Your?information is thorough, informative, helpful and well-said. I might add, I was also placed on Alphagan drops which really seemed to help with vision especially in the eye most affected by NAION. However, after 12 months of use, symptoms similar to conjunctivitis, two trips to the Ophthalmologist and a confirmation by my NO,? I was diagnosed as being allergic?to Alphagan and had to stop. Hope this does not occur often. Happy New Year!
On Sat, Dec 31, 2022 at 10:57 PM Aloke Gupta via <gaurieyeclinic= [email protected]> wrote: Happy New Year to all from India
One thing which I have realized is that no one (read God or any one up there) is coming to save us. We are sent into this world to fend and fight for ourselves.?
No, NO or Ophthalmologist knows the exact cause and prevention of this disease NAION.
I can summarize my condition in four words: apprehension, anxiety, insecurity and uncertainty.?Though these have become much less now.
Any crippling disease from which we suffer, is stuck to us for our whole life. No miraculous cure for any permanent disease.
Having written that, let me share what I have understood in this life. When my children were young we used to go and watch Harry Potter movie series, whenever the movies were released. We used to watch them several times.?
Two important things I understood from those movie: - In Harry Potter and Goblet of Fire, Mad Eye Moody tells Harry Potter when he was tense to go for tasks: You are allowed a wand. Similarly in this duel called world,?we are allowed a Brain. That means, whatever be the situation, we must use our brains all the time.
- In the movie Harry Potter and half blood Prince, have you ever thought why Harry's potions were perfect all the time? It was because he never made them by the standard book of potions. Instead he made potions from the book that belonged to Half Blood Prince, who had cut the printed points in the book and written his own method. This is also true for medicine. As doctors we almost never go by the book, but treat patients with knowledge learnt from books but modified by our experiences.
I suffered from NAION 6 years back (I am 58, now). Ever since then, me and wife have not stopped thinking, what went wrong?
Both of us are doctors and I am an Ophthalmologist.
Retrospective Analysis (my mistakes probably): After I noticed the field defect, I immediately started Methylprednisolone and then oral steroids. But I did not stop blood pressure medicines, neither reduced them. To counteract my severe anxiety I took anti anxiety medicines, which may have further caused drop in my blood pressure. This may have contributed to continuous damage with loss of my upper, nasal and central field. So, retrospectively, I feel I should have reduced BP medicines immediately, because it is said that that NAION occurs due to failure of auto regulation of optic nerve perfusion, contributed by low blood pressure. I should have also stopped anti anxiety medicines in time and should have fought my anxiety with self control. However, there is one anti anxiety medicine which doesn't lower blood pressure significantly. This we can take almost daily in low doses. I will share the name below.? Another factor which may have contributed to my NAION is stress.?I am still trying to control it to the my maximum capacity. Prior to NAION, my intraocular pressure (IOP) used to come high on Non Contact Tonometer (NCT), but were always normal by Applanation and Schiotz Tonometry. I should have started IOP lowering medicines prior to my NAION.?
What I am doing now? - I am taking my BP medicines at 5 AM and 5 PM. I have reduced my BP medicines than prior to NAION. Regularly monitoring BP by Omron Electronic BP instrument. Our BP is higher immediately after getting up. So don't increase the dose until it regularly crosses 140 / 90 after getting up in the morning. You have to self titrate your BP medicines by regularly monitoring it. No doctor can do it for you. Make a chart of your BP readings, then consult a doctor for continuing the same medicines or increase / decrease the dose. In my opinion, we should maintain BP between 110 / 70 and 140 / 90. Not too low nor too high.
- I am taking Lipid lowering medicines (Statins).?
- I am taking half tablet of Ecosprin (Aspirin) 75 mg. When I was taking full 75 mg daily, I started bleeding from gums while brushing. In my opinion lower regular dose works the same way as higher but with less risk of bleeding. Again, no doctor will agree to this because they go by the book. Pill cutter is available on Amazon. Don't worry, if the pill gets cut in two unequal halves.
- I was using Brimonidine eye drops (Alphagan Z, Allergan) three times a day both eyes, ever since my NAION attack. This brings me to my one very significant observation. My IOP with NCT were still higher in both eyes. My CCT (central corneal thickness) was normal and OCT was as expected. Retinal Nerve Fiber Layer (RNLF) thickness was significantly reduced in my affected eye (expected) but was still within normal range barring 2 quadrants in RNLF study. So, I started Lumigan 0.01 (Bimatoprost, Allergan) at bed time and switched to Simbrinza eye drops (Brinzolamide + Brimonidine, Alcon) twice daily, on my own. This, I started around one and a half months back. I used to suffer from frequent headaches and migraine for which I had to take pain killers almost alternate day. But ever since I started these IOP lowering medicines the frequency of my headaches have dramatically reduced to once a week and that responds to just Crocin Pain Relief (Paracetamol 650 + Caffeine 50). For years and years (maybe since my college days), I suffered from headaches, tried almost everything. (A word of caution here, all Migraine preventing medicines can lower your BP). Being an Ophthalmologist and a doctor I can get the medicines easily and I can start and stop the medicines and experiment whenever I want, for which probably, you have to work in close contact with your Ophthalmologist or NO. Again, no doctor will agree to my this observation. Tell your doctor that I don't have narrow angles on gonioscopy, they are wide open and I am a myope. So chances of subclinical angle closure glaucoma are zero.
- I take anti oxidants and vitamins daily, though they have no proven role in NAION prevention. Citicholine has no role in NAION.
- I take Clonazepam 0.25 mg maximum during the day to help my self control over anxiety. Either, I take one third in the morning and one third in the evening or I take half in the evening around 6 pm. This dose doesn't lower your BP and helps you control your anxiety. Clonazepam is a brittle medicine. Can be broken easily. Again, don't worry for unequal halves.
My opinion on optic nerve head perfusion: There may be a critical balance between your BP and IOP. An increased IOP and reduced BP can affect your optic nerve perfusion. So control your BP between 140 / 90 and 110 / 70 and your IOPs below 20.
I hope this may be of help to some.
Aloke
|
Re: My Experience with NAION
Dear Michele, Allergy to all antiglaucoma medicines, after you have used them for some time (like one year in your case), are usually due to preservatives in the medicines and not due to the medicine itself. Please find out if preservative free unims are available in your country of Brimonidine eye drops.?
Also, you can try Alaphagan Z (Allergan), which works just as good and has the least concentration of Brimonidine.
Alphagan eye drops: Brimonidine 0.2%, Benzalkonium Chloride as preservative
Alphagan P eye drops: Brimonidine 0.15%,? Stabilized Oxychloro Complex (SOC or Purite) as preservative
Alphagan Z eye drops: Brimonidine 0.1%, Stabilized Oxychloro Complex as preservative.
SOC as a preservative is much better because because it breaks down into Sodium and Chloride ions water and oxygen after coming in contact with eye and therefore less likely to cause irritation or allergy on long term use.
Hope this helps
On Tuesday, 3 January, 2023 at 11:35:47 pm IST, Michele Bunch <bunch.michele@...> wrote:
Thank you Dr. Gupta! Your?information is thorough, informative, helpful and well-said. I might add, I was also placed on Alphagan drops which really seemed to help with vision especially in the eye most affected by NAION. However, after 12 months of use, symptoms similar to conjunctivitis, two trips to the Ophthalmologist and a confirmation by my NO,? I was diagnosed as being allergic?to Alphagan and had to stop. Hope this does not occur often. Happy New Year!
toggle quoted message
Show quoted text
On Sat, Dec 31, 2022 at 10:57 PM Aloke Gupta via <gaurieyeclinic= [email protected]> wrote: Happy New Year to all from India
One thing which I have realized is that no one (read God or any one up there) is coming to save us. We are sent into this world to fend and fight for ourselves.?
No, NO or Ophthalmologist knows the exact cause and prevention of this disease NAION.
I can summarize my condition in four words: apprehension, anxiety, insecurity and uncertainty.?Though these have become much less now.
Any crippling disease from which we suffer, is stuck to us for our whole life. No miraculous cure for any permanent disease.
Having written that, let me share what I have understood in this life. When my children were young we used to go and watch Harry Potter movie series, whenever the movies were released. We used to watch them several times.?
Two important things I understood from those movie: - In Harry Potter and Goblet of Fire, Mad Eye Moody tells Harry Potter when he was tense to go for tasks: You are allowed a wand. Similarly in this duel called world,?we are allowed a Brain. That means, whatever be the situation, we must use our brains all the time.
- In the movie Harry Potter and half blood Prince, have you ever thought why Harry's potions were perfect all the time? It was because he never made them by the standard book of potions. Instead he made potions from the book that belonged to Half Blood Prince, who had cut the printed points in the book and written his own method. This is also true for medicine. As doctors we almost never go by the book, but treat patients with knowledge learnt from books but modified by our experiences.
I suffered from NAION 6 years back (I am 58, now). Ever since then, me and wife have not stopped thinking, what went wrong?
Both of us are doctors and I am an Ophthalmologist.
Retrospective Analysis (my mistakes probably): After I noticed the field defect, I immediately started Methylprednisolone and then oral steroids. But I did not stop blood pressure medicines, neither reduced them. To counteract my severe anxiety I took anti anxiety medicines, which may have further caused drop in my blood pressure. This may have contributed to continuous damage with loss of my upper, nasal and central field. So, retrospectively, I feel I should have reduced BP medicines immediately, because it is said that that NAION occurs due to failure of auto regulation of optic nerve perfusion, contributed by low blood pressure. I should have also stopped anti anxiety medicines in time and should have fought my anxiety with self control. However, there is one anti anxiety medicine which doesn't lower blood pressure significantly. This we can take almost daily in low doses. I will share the name below.? Another factor which may have contributed to my NAION is stress.?I am still trying to control it to the my maximum capacity. Prior to NAION, my intraocular pressure (IOP) used to come high on Non Contact Tonometer (NCT), but were always normal by Applanation and Schiotz Tonometry. I should have started IOP lowering medicines prior to my NAION.?
What I am doing now? - I am taking my BP medicines at 5 AM and 5 PM. I have reduced my BP medicines than prior to NAION. Regularly monitoring BP by Omron Electronic BP instrument. Our BP is higher immediately after getting up. So don't increase the dose until it regularly crosses 140 / 90 after getting up in the morning. You have to self titrate your BP medicines by regularly monitoring it. No doctor can do it for you. Make a chart of your BP readings, then consult a doctor for continuing the same medicines or increase / decrease the dose. In my opinion, we should maintain BP between 110 / 70 and 140 / 90. Not too low nor too high.
- I am taking Lipid lowering medicines (Statins).?
- I am taking half tablet of Ecosprin (Aspirin) 75 mg. When I was taking full 75 mg daily, I started bleeding from gums while brushing. In my opinion lower regular dose works the same way as higher but with less risk of bleeding. Again, no doctor will agree to this because they go by the book. Pill cutter is available on Amazon. Don't worry, if the pill gets cut in two unequal halves.
- I was using Brimonidine eye drops (Alphagan Z, Allergan) three times a day both eyes, ever since my NAION attack. This brings me to my one very significant observation. My IOP with NCT were still higher in both eyes. My CCT (central corneal thickness) was normal and OCT was as expected. Retinal Nerve Fiber Layer (RNLF) thickness was significantly reduced in my affected eye (expected) but was still within normal range barring 2 quadrants in RNLF study. So, I started Lumigan 0.01 (Bimatoprost, Allergan) at bed time and switched to Simbrinza eye drops (Brinzolamide + Brimonidine, Alcon) twice daily, on my own. This, I started around one and a half months back. I used to suffer from frequent headaches and migraine for which I had to take pain killers almost alternate day. But ever since I started these IOP lowering medicines the frequency of my headaches have dramatically reduced to once a week and that responds to just Crocin Pain Relief (Paracetamol 650 + Caffeine 50). For years and years (maybe since my college days), I suffered from headaches, tried almost everything. (A word of caution here, all Migraine preventing medicines can lower your BP). Being an Ophthalmologist and a doctor I can get the medicines easily and I can start and stop the medicines and experiment whenever I want, for which probably, you have to work in close contact with your Ophthalmologist or NO. Again, no doctor will agree to my this observation. Tell your doctor that I don't have narrow angles on gonioscopy, they are wide open and I am a myope. So chances of subclinical angle closure glaucoma are zero.
- I take anti oxidants and vitamins daily, though they have no proven role in NAION prevention. Citicholine has no role in NAION.
- I take Clonazepam 0.25 mg maximum during the day to help my self control over anxiety. Either, I take one third in the morning and one third in the evening or I take half in the evening around 6 pm. This dose doesn't lower your BP and helps you control your anxiety. Clonazepam is a brittle medicine. Can be broken easily. Again, don't worry for unequal halves.
My opinion on optic nerve head perfusion: There may be a critical balance between your BP and IOP. An increased IOP and reduced BP can affect your optic nerve perfusion. So control your BP between 140 / 90 and 110 / 70 and your IOPs below 20.
I hope this may be of help to some.
Aloke
|
Re: My Experience with NAION
Thank you Dr. Gupta! Your?information is thorough, informative, helpful and well-said. I might add, I was also placed on Alphagan drops which really seemed to help with vision especially in the eye most affected by NAION. However, after 12 months of use, symptoms similar to conjunctivitis, two trips to the Ophthalmologist and a confirmation by my NO,? I was diagnosed as being allergic?to Alphagan and had to stop. Hope this does not occur often. Happy New Year!
toggle quoted message
Show quoted text
On Sat, Dec 31, 2022 at 10:57 PM Aloke Gupta via <gaurieyeclinic= [email protected]> wrote: Happy New Year to all from India
One thing which I have realized is that no one (read God or any one up there) is coming to save us. We are sent into this world to fend and fight for ourselves.?
No, NO or Ophthalmologist knows the exact cause and prevention of this disease NAION.
I can summarize my condition in four words: apprehension, anxiety, insecurity and uncertainty.?Though these have become much less now.
Any crippling disease from which we suffer, is stuck to us for our whole life. No miraculous cure for any permanent disease.
Having written that, let me share what I have understood in this life. When my children were young we used to go and watch Harry Potter movie series, whenever the movies were released. We used to watch them several times.?
Two important things I understood from those movie: - In Harry Potter and Goblet of Fire, Mad Eye Moody tells Harry Potter when he was tense to go for tasks: You are allowed a wand. Similarly in this duel called world,?we are allowed a Brain. That means, whatever be the situation, we must use our brains all the time.
- In the movie Harry Potter and half blood Prince, have you ever thought why Harry's potions were perfect all the time? It was because he never made them by the standard book of potions. Instead he made potions from the book that belonged to Half Blood Prince, who had cut the printed points in the book and written his own method. This is also true for medicine. As doctors we almost never go by the book, but treat patients with knowledge learnt from books but modified by our experiences.
I suffered from NAION 6 years back (I am 58, now). Ever since then, me and wife have not stopped thinking, what went wrong?
Both of us are doctors and I am an Ophthalmologist.
Retrospective Analysis (my mistakes probably): After I noticed the field defect, I immediately started Methylprednisolone and then oral steroids. But I did not stop blood pressure medicines, neither reduced them. To counteract my severe anxiety I took anti anxiety medicines, which may have further caused drop in my blood pressure. This may have contributed to continuous damage with loss of my upper, nasal and central field. So, retrospectively, I feel I should have reduced BP medicines immediately, because it is said that that NAION occurs due to failure of auto regulation of optic nerve perfusion, contributed by low blood pressure. I should have also stopped anti anxiety medicines in time and should have fought my anxiety with self control. However, there is one anti anxiety medicine which doesn't lower blood pressure significantly. This we can take almost daily in low doses. I will share the name below.? Another factor which may have contributed to my NAION is stress.?I am still trying to control it to the my maximum capacity. Prior to NAION, my intraocular pressure (IOP) used to come high on Non Contact Tonometer (NCT), but were always normal by Applanation and Schiotz Tonometry. I should have started IOP lowering medicines prior to my NAION.?
What I am doing now? - I am taking my BP medicines at 5 AM and 5 PM. I have reduced my BP medicines than prior to NAION. Regularly monitoring BP by Omron Electronic BP instrument. Our BP is higher immediately after getting up. So don't increase the dose until it regularly crosses 140 / 90 after getting up in the morning. You have to self titrate your BP medicines by regularly monitoring it. No doctor can do it for you. Make a chart of your BP readings, then consult a doctor for continuing the same medicines or increase / decrease the dose. In my opinion, we should maintain BP between 110 / 70 and 140 / 90. Not too low nor too high.
- I am taking Lipid lowering medicines (Statins).?
- I am taking half tablet of Ecosprin (Aspirin) 75 mg. When I was taking full 75 mg daily, I started bleeding from gums while brushing. In my opinion lower regular dose works the same way as higher but with less risk of bleeding. Again, no doctor will agree to this because they go by the book. Pill cutter is available on Amazon. Don't worry, if the pill gets cut in two unequal halves.
- I was using Brimonidine eye drops (Alphagan Z, Allergan) three times a day both eyes, ever since my NAION attack. This brings me to my one very significant observation. My IOP with NCT were still higher in both eyes. My CCT (central corneal thickness) was normal and OCT was as expected. Retinal Nerve Fiber Layer (RNLF) thickness was significantly reduced in my affected eye (expected) but was still within normal range barring 2 quadrants in RNLF study. So, I started Lumigan 0.01 (Bimatoprost, Allergan) at bed time and switched to Simbrinza eye drops (Brinzolamide + Brimonidine, Alcon) twice daily, on my own. This, I started around one and a half months back. I used to suffer from frequent headaches and migraine for which I had to take pain killers almost alternate day. But ever since I started these IOP lowering medicines the frequency of my headaches have dramatically reduced to once a week and that responds to just Crocin Pain Relief (Paracetamol 650 + Caffeine 50). For years and years (maybe since my college days), I suffered from headaches, tried almost everything. (A word of caution here, all Migraine preventing medicines can lower your BP). Being an Ophthalmologist and a doctor I can get the medicines easily and I can start and stop the medicines and experiment whenever I want, for which probably, you have to work in close contact with your Ophthalmologist or NO. Again, no doctor will agree to my this observation. Tell your doctor that I don't have narrow angles on gonioscopy, they are wide open and I am a myope. So chances of subclinical angle closure glaucoma are zero.
- I take anti oxidants and vitamins daily, though they have no proven role in NAION prevention. Citicholine has no role in NAION.
- I take Clonazepam 0.25 mg maximum during the day to help my self control over anxiety. Either, I take one third in the morning and one third in the evening or I take half in the evening around 6 pm. This dose doesn't lower your BP and helps you control your anxiety. Clonazepam is a brittle medicine. Can be broken easily. Again, don't worry for unequal halves.
My opinion on optic nerve head perfusion: There may be a critical balance between your BP and IOP. An increased IOP and reduced BP can affect your optic nerve perfusion. So control your BP between 140 / 90 and 110 / 70 and your IOPs below 20.
I hope this may be of help to some.
Aloke
|
Re: My Experience with NAION
Thank you Aloke. very helpful! Happy New Year to you and your family!
toggle quoted message
Show quoted text
On Mon, Jan 2, 2023 at 1:21 AM Chiarina Blake < jc.blake2@...> wrote: Thank you so much.? this has been amazing.?
On Sun, Jan 1, 2023 at 2:57 PM Aloke Gupta via <gaurieyeclinic= [email protected]> wrote: Happy New Year to all from India
One thing which I have realized is that no one (read God or any one up there) is coming to save us. We are sent into this world to fend and fight for ourselves.?
No, NO or Ophthalmologist knows the exact cause and prevention of this disease NAION.
I can summarize my condition in four words: apprehension, anxiety, insecurity and uncertainty.?Though these have become much less now.
Any crippling disease from which we suffer, is stuck to us for our whole life. No miraculous cure for any permanent disease.
Having written that, let me share what I have understood in this life. When my children were young we used to go and watch Harry Potter movie series, whenever the movies were released. We used to watch them several times.?
Two important things I understood from those movie: - In Harry Potter and Goblet of Fire, Mad Eye Moody tells Harry Potter when he was tense to go for tasks: You are allowed a wand. Similarly in this duel called world,?we are allowed a Brain. That means, whatever be the situation, we must use our brains all the time.
- In the movie Harry Potter and half blood Prince, have you ever thought why Harry's potions were perfect all the time? It was because he never made them by the standard book of potions. Instead he made potions from the book that belonged to Half Blood Prince, who had cut the printed points in the book and written his own method. This is also true for medicine. As doctors we almost never go by the book, but treat patients with knowledge learnt from books but modified by our experiences.
I suffered from NAION 6 years back (I am 58, now). Ever since then, me and wife have not stopped thinking, what went wrong?
Both of us are doctors and I am an Ophthalmologist.
Retrospective Analysis (my mistakes probably): After I noticed the field defect, I immediately started Methylprednisolone and then oral steroids. But I did not stop blood pressure medicines, neither reduced them. To counteract my severe anxiety I took anti anxiety medicines, which may have further caused drop in my blood pressure. This may have contributed to continuous damage with loss of my upper, nasal and central field. So, retrospectively, I feel I should have reduced BP medicines immediately, because it is said that that NAION occurs due to failure of auto regulation of optic nerve perfusion, contributed by low blood pressure. I should have also stopped anti anxiety medicines in time and should have fought my anxiety with self control. However, there is one anti anxiety medicine which doesn't lower blood pressure significantly. This we can take almost daily in low doses. I will share the name below.? Another factor which may have contributed to my NAION is stress.?I am still trying to control it to the my maximum capacity. Prior to NAION, my intraocular pressure (IOP) used to come high on Non Contact Tonometer (NCT), but were always normal by Applanation and Schiotz Tonometry. I should have started IOP lowering medicines prior to my NAION.?
What I am doing now? - I am taking my BP medicines at 5 AM and 5 PM. I have reduced my BP medicines than prior to NAION. Regularly monitoring BP by Omron Electronic BP instrument. Our BP is higher immediately after getting up. So don't increase the dose until it regularly crosses 140 / 90 after getting up in the morning. You have to self titrate your BP medicines by regularly monitoring it. No doctor can do it for you. Make a chart of your BP readings, then consult a doctor for continuing the same medicines or increase / decrease the dose. In my opinion, we should maintain BP between 110 / 70 and 140 / 90. Not too low nor too high.
- I am taking Lipid lowering medicines (Statins).?
- I am taking half tablet of Ecosprin (Aspirin) 75 mg. When I was taking full 75 mg daily, I started bleeding from gums while brushing. In my opinion lower regular dose works the same way as higher but with less risk of bleeding. Again, no doctor will agree to this because they go by the book. Pill cutter is available on Amazon. Don't worry, if the pill gets cut in two unequal halves.
- I was using Brimonidine eye drops (Alphagan Z, Allergan) three times a day both eyes, ever since my NAION attack. This brings me to my one very significant observation. My IOP with NCT were still higher in both eyes. My CCT (central corneal thickness) was normal and OCT was as expected. Retinal Nerve Fiber Layer (RNLF) thickness was significantly reduced in my affected eye (expected) but was still within normal range barring 2 quadrants in RNLF study. So, I started Lumigan 0.01 (Bimatoprost, Allergan) at bed time and switched to Simbrinza eye drops (Brinzolamide + Brimonidine, Alcon) twice daily, on my own. This, I started around one and a half months back. I used to suffer from frequent headaches and migraine for which I had to take pain killers almost alternate day. But ever since I started these IOP lowering medicines the frequency of my headaches have dramatically reduced to once a week and that responds to just Crocin Pain Relief (Paracetamol 650 + Caffeine 50). For years and years (maybe since my college days), I suffered from headaches, tried almost everything. (A word of caution here, all Migraine preventing medicines can lower your BP). Being an Ophthalmologist and a doctor I can get the medicines easily and I can start and stop the medicines and experiment whenever I want, for which probably, you have to work in close contact with your Ophthalmologist or NO. Again, no doctor will agree to my this observation. Tell your doctor that I don't have narrow angles on gonioscopy, they are wide open and I am a myope. So chances of subclinical angle closure glaucoma are zero.
- I take anti oxidants and vitamins daily, though they have no proven role in NAION prevention. Citicholine has no role in NAION.
- I take Clonazepam 0.25 mg maximum during the day to help my self control over anxiety. Either, I take one third in the morning and one third in the evening or I take half in the evening around 6 pm. This dose doesn't lower your BP and helps you control your anxiety. Clonazepam is a brittle medicine. Can be broken easily. Again, don't worry for unequal halves.
My opinion on optic nerve head perfusion: There may be a critical balance between your BP and IOP. An increased IOP and reduced BP can affect your optic nerve perfusion. So control your BP between 140 / 90 and 110 / 70 and your IOPs below 20.
I hope this may be of help to some.
Aloke
|
Re: COVID treatments and blood pressure
Again .. ck with your primary care M.D.? Always.
toggle quoted message
Show quoted text
On Sun, Jan 1, 2023 at 5:31 PM, Bobbie James <rrjames61@...> wrote: Russ, what exactly do you mean "under MD supervision?"? Do you mean you were at your doc's office when you got the vaccine or was it just that you made your NO aware that you were getting it in case you had an episode and needed to come in on an emergency basis?? ?I've been holding off getting the last booster because, although I don't really believe there is a connection between NAION and Covid vax, I would really, really hate to wake up the next morning (or next week, etc.) with NAION in my good eye.? Thanks.
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 <screwielouietoo= [email protected]> 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 <dlkeasler=[email protected]> wrote: Does anyone know if there are any COVID treatments to be avoided due to their effects on blood pressure?
|
Thank you JOe.? I appreciate your contribution.? You have given me some hope.?
toggle quoted message
Show quoted text
On Mon, Jan 2, 2023 at 9:33 AM Bobbie James < rrjames61@...> wrote: Joe, where in CR?? I spent a week near Nosara last year and absolutely loved it!? Can't wait to go back...
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
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.
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: My Experience with NAION
Thank you so much.? this has been amazing.?
toggle quoted message
Show quoted text
On Sun, Jan 1, 2023 at 2:57 PM Aloke Gupta via <gaurieyeclinic= [email protected]> wrote: Happy New Year to all from India
One thing which I have realized is that no one (read God or any one up there) is coming to save us. We are sent into this world to fend and fight for ourselves.?
No, NO or Ophthalmologist knows the exact cause and prevention of this disease NAION.
I can summarize my condition in four words: apprehension, anxiety, insecurity and uncertainty.?Though these have become much less now.
Any crippling disease from which we suffer, is stuck to us for our whole life. No miraculous cure for any permanent disease.
Having written that, let me share what I have understood in this life. When my children were young we used to go and watch Harry Potter movie series, whenever the movies were released. We used to watch them several times.?
Two important things I understood from those movie: - In Harry Potter and Goblet of Fire, Mad Eye Moody tells Harry Potter when he was tense to go for tasks: You are allowed a wand. Similarly in this duel called world,?we are allowed a Brain. That means, whatever be the situation, we must use our brains all the time.
- In the movie Harry Potter and half blood Prince, have you ever thought why Harry's potions were perfect all the time? It was because he never made them by the standard book of potions. Instead he made potions from the book that belonged to Half Blood Prince, who had cut the printed points in the book and written his own method. This is also true for medicine. As doctors we almost never go by the book, but treat patients with knowledge learnt from books but modified by our experiences.
I suffered from NAION 6 years back (I am 58, now). Ever since then, me and wife have not stopped thinking, what went wrong?
Both of us are doctors and I am an Ophthalmologist.
Retrospective Analysis (my mistakes probably): After I noticed the field defect, I immediately started Methylprednisolone and then oral steroids. But I did not stop blood pressure medicines, neither reduced them. To counteract my severe anxiety I took anti anxiety medicines, which may have further caused drop in my blood pressure. This may have contributed to continuous damage with loss of my upper, nasal and central field. So, retrospectively, I feel I should have reduced BP medicines immediately, because it is said that that NAION occurs due to failure of auto regulation of optic nerve perfusion, contributed by low blood pressure. I should have also stopped anti anxiety medicines in time and should have fought my anxiety with self control. However, there is one anti anxiety medicine which doesn't lower blood pressure significantly. This we can take almost daily in low doses. I will share the name below.? Another factor which may have contributed to my NAION is stress.?I am still trying to control it to the my maximum capacity. Prior to NAION, my intraocular pressure (IOP) used to come high on Non Contact Tonometer (NCT), but were always normal by Applanation and Schiotz Tonometry. I should have started IOP lowering medicines prior to my NAION.?
What I am doing now? - I am taking my BP medicines at 5 AM and 5 PM. I have reduced my BP medicines than prior to NAION. Regularly monitoring BP by Omron Electronic BP instrument. Our BP is higher immediately after getting up. So don't increase the dose until it regularly crosses 140 / 90 after getting up in the morning. You have to self titrate your BP medicines by regularly monitoring it. No doctor can do it for you. Make a chart of your BP readings, then consult a doctor for continuing the same medicines or increase / decrease the dose. In my opinion, we should maintain BP between 110 / 70 and 140 / 90. Not too low nor too high.
- I am taking Lipid lowering medicines (Statins).?
- I am taking half tablet of Ecosprin (Aspirin) 75 mg. When I was taking full 75 mg daily, I started bleeding from gums while brushing. In my opinion lower regular dose works the same way as higher but with less risk of bleeding. Again, no doctor will agree to this because they go by the book. Pill cutter is available on Amazon. Don't worry, if the pill gets cut in two unequal halves.
- I was using Brimonidine eye drops (Alphagan Z, Allergan) three times a day both eyes, ever since my NAION attack. This brings me to my one very significant observation. My IOP with NCT were still higher in both eyes. My CCT (central corneal thickness) was normal and OCT was as expected. Retinal Nerve Fiber Layer (RNLF) thickness was significantly reduced in my affected eye (expected) but was still within normal range barring 2 quadrants in RNLF study. So, I started Lumigan 0.01 (Bimatoprost, Allergan) at bed time and switched to Simbrinza eye drops (Brinzolamide + Brimonidine, Alcon) twice daily, on my own. This, I started around one and a half months back. I used to suffer from frequent headaches and migraine for which I had to take pain killers almost alternate day. But ever since I started these IOP lowering medicines the frequency of my headaches have dramatically reduced to once a week and that responds to just Crocin Pain Relief (Paracetamol 650 + Caffeine 50). For years and years (maybe since my college days), I suffered from headaches, tried almost everything. (A word of caution here, all Migraine preventing medicines can lower your BP). Being an Ophthalmologist and a doctor I can get the medicines easily and I can start and stop the medicines and experiment whenever I want, for which probably, you have to work in close contact with your Ophthalmologist or NO. Again, no doctor will agree to my this observation. Tell your doctor that I don't have narrow angles on gonioscopy, they are wide open and I am a myope. So chances of subclinical angle closure glaucoma are zero.
- I take anti oxidants and vitamins daily, though they have no proven role in NAION prevention. Citicholine has no role in NAION.
- I take Clonazepam 0.25 mg maximum during the day to help my self control over anxiety. Either, I take one third in the morning and one third in the evening or I take half in the evening around 6 pm. This dose doesn't lower your BP and helps you control your anxiety. Clonazepam is a brittle medicine. Can be broken easily. Again, don't worry for unequal halves.
My opinion on optic nerve head perfusion: There may be a critical balance between your BP and IOP. An increased IOP and reduced BP can affect your optic nerve perfusion. So control your BP between 140 / 90 and 110 / 70 and your IOPs below 20.
I hope this may be of help to some.
Aloke
|
Gary, I'm curious about what you meant by, "Maybe a permanently dwelling virus is in play here somewhere?"? I have a permanently dwelling virus and wondering what the link might be...
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Show quoted text
I¡¯ve not read anything that can definitively pinpoint the actual cause of NAION.? Sure there are some well thought out theories which ¡°may¡± be accurate.? At my diagnosis, I didn¡¯t have a threat for low blood pressure, my cholesterol was well below guidelines and the sleep study I took soon thereafter showed less than enough incidents per hour to be concerned with (although I am in a CPAP strictly due to NAION and NO suggestion.? In the meantime I do have peripheral neuropathy and had been misdiagnosed with trigeminal neuralgia and had recently had a bout of shingles.? So, at least for me, I¡¯ll respect the theories and go along with them to a degree but I don¡¯t believe they are necessarily settled.? Maybe a permanently dwelling virus is in play here somewhere? ?
|
Joe, where in CR?? I spent a week near Nosara last year and absolutely loved it!? Can't wait to go back...
toggle quoted message
Show quoted text
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
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.
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: COVID treatments and blood pressure
Russ, what exactly do you mean "under MD supervision?"? Do you mean you were at your doc's office when you got the vaccine or was it just that you made your NO aware that you were getting it in case you had an episode and needed to come in on an emergency basis?? ?I've been holding off getting the last booster because, although I don't really believe there is a connection between NAION and Covid vax, I would really, really hate to wake up the next morning (or next week, etc.) with NAION in my good eye.? Thanks.
toggle quoted message
Show quoted text
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 <screwielouietoo= [email protected]> 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 <dlkeasler=[email protected]> wrote: Does anyone know if there are any COVID treatments to be avoided due to their effects on blood pressure?
|
Re: My Experience with NAION
THANKS, ALOKE!? Very informative!? Happy 2023 to you!
Diane Keasler
Life is the school, love is the lesson.
On Saturday, December 31, 2022 at 10:57:43 PM EST, Aloke Gupta via groups.io <gaurieyeclinic@...> wrote:
Happy New Year to all from India
One thing which I have realized is that no one (read God or any one up there) is coming to save us. We are sent into this world to fend and fight for ourselves.?
No, NO or Ophthalmologist knows the exact cause and prevention of this disease NAION.
I can summarize my condition in four words: apprehension, anxiety, insecurity and uncertainty.?Though these have become much less now.
Any crippling disease from which we suffer, is stuck to us for our whole life. No miraculous cure for any permanent disease.
Having written that, let me share what I have understood in this life. When my children were young we used to go and watch Harry Potter movie series, whenever the movies were released. We used to watch them several times.?
Two important things I understood from those movie: - In Harry Potter and Goblet of Fire, Mad Eye Moody tells Harry Potter when he was tense to go for tasks: You are allowed a wand. Similarly in this duel called world,?we are allowed a Brain. That means, whatever be the situation, we must use our brains all the time.
- In the movie Harry Potter and half blood Prince, have you ever thought why Harry's potions were perfect all the time? It was because he never made them by the standard book of potions. Instead he made potions from the book that belonged to Half Blood Prince, who had cut the printed points in the book and written his own method. This is also true for medicine. As doctors we almost never go by the book, but treat patients with knowledge learnt from books but modified by our experiences.
I suffered from NAION 6 years back (I am 58, now). Ever since then, me and wife have not stopped thinking, what went wrong?
Both of us are doctors and I am an Ophthalmologist.
Retrospective Analysis (my mistakes probably): After I noticed the field defect, I immediately started Methylprednisolone and then oral steroids. But I did not stop blood pressure medicines, neither reduced them. To counteract my severe anxiety I took anti anxiety medicines, which may have further caused drop in my blood pressure. This may have contributed to continuous damage with loss of my upper, nasal and central field. So, retrospectively, I feel I should have reduced BP medicines immediately, because it is said that that NAION occurs due to failure of auto regulation of optic nerve perfusion, contributed by low blood pressure. I should have also stopped anti anxiety medicines in time and should have fought my anxiety with self control. However, there is one anti anxiety medicine which doesn't lower blood pressure significantly. This we can take almost daily in low doses. I will share the name below.? Another factor which may have contributed to my NAION is stress.?I am still trying to control it to the my maximum capacity. Prior to NAION, my intraocular pressure (IOP) used to come high on Non Contact Tonometer (NCT), but were always normal by Applanation and Schiotz Tonometry. I should have started IOP lowering medicines prior to my NAION.?
What I am doing now? - I am taking my BP medicines at 5 AM and 5 PM. I have reduced my BP medicines than prior to NAION. Regularly monitoring BP by Omron Electronic BP instrument. Our BP is higher immediately after getting up. So don't increase the dose until it regularly crosses 140 / 90 after getting up in the morning. You have to self titrate your BP medicines by regularly monitoring it. No doctor can do it for you. Make a chart of your BP readings, then consult a doctor for continuing the same medicines or increase / decrease the dose. In my opinion, we should maintain BP between 110 / 70 and 140 / 90. Not too low nor too high.
- I am taking Lipid lowering medicines (Statins).?
- I am taking half tablet of Ecosprin (Aspirin) 75 mg. When I was taking full 75 mg daily, I started bleeding from gums while brushing. In my opinion lower regular dose works the same way as higher but with less risk of bleeding. Again, no doctor will agree to this because they go by the book. Pill cutter is available on Amazon. Don't worry, if the pill gets cut in two unequal halves.
- I was using Brimonidine eye drops (Alphagan Z, Allergan) three times a day both eyes, ever since my NAION attack. This brings me to my one very significant observation. My IOP with NCT were still higher in both eyes. My CCT (central corneal thickness) was normal and OCT was as expected. Retinal Nerve Fiber Layer (RNLF) thickness was significantly reduced in my affected eye (expected) but was still within normal range barring 2 quadrants in RNLF study. So, I started Lumigan 0.01 (Bimatoprost, Allergan) at bed time and switched to Simbrinza eye drops (Brinzolamide + Brimonidine, Alcon) twice daily, on my own. This, I started around one and a half months back. I used to suffer from frequent headaches and migraine for which I had to take pain killers almost alternate day. But ever since I started these IOP lowering medicines the frequency of my headaches have dramatically reduced to once a week and that responds to just Crocin Pain Relief (Paracetamol 650 + Caffeine 50). For years and years (maybe since my college days), I suffered from headaches, tried almost everything. (A word of caution here, all Migraine preventing medicines can lower your BP). Being an Ophthalmologist and a doctor I can get the medicines easily and I can start and stop the medicines and experiment whenever I want, for which probably, you have to work in close contact with your Ophthalmologist or NO. Again, no doctor will agree to my this observation. Tell your doctor that I don't have narrow angles on gonioscopy, they are wide open and I am a myope. So chances of subclinical angle closure glaucoma are zero.
- I take anti oxidants and vitamins daily, though they have no proven role in NAION prevention. Citicholine has no role in NAION.
- I take Clonazepam 0.25 mg maximum during the day to help my self control over anxiety. Either, I take one third in the morning and one third in the evening or I take half in the evening around 6 pm. This dose doesn't lower your BP and helps you control your anxiety. Clonazepam is a brittle medicine. Can be broken easily. Again, don't worry for unequal halves.
My opinion on optic nerve head perfusion: There may be a critical balance between your BP and IOP. An increased IOP and reduced BP can affect your optic nerve perfusion. So control your BP between 140 / 90 and 110 / 70 and your IOPs below 20.
I hope this may be of help to some.
Aloke
|
Happy New Year to all from India
One thing which I have realized is that no one (read God or any one up there) is coming to save us. We are sent into this world to fend and fight for ourselves.?
No, NO or Ophthalmologist knows the exact cause and prevention of this disease NAION.
I can summarize my condition in four words: apprehension, anxiety, insecurity and uncertainty.?Though these have become much less now.
Any crippling disease from which we suffer, is stuck to us for our whole life. No miraculous cure for any permanent disease.
Having written that, let me share what I have understood in this life. When my children were young we used to go and watch Harry Potter movie series, whenever the movies were released. We used to watch them several times.?
Two important things I understood from those movie: - In Harry Potter and Goblet of Fire, Mad Eye Moody tells Harry Potter when he was tense to go for tasks: You are allowed a wand. Similarly in this duel called world,?we are allowed a Brain. That means, whatever be the situation, we must use our brains all the time.
- In the movie Harry Potter and half blood Prince, have you ever thought why Harry's potions were perfect all the time? It was because he never made them by the standard book of potions. Instead he made potions from the book that belonged to Half Blood Prince, who had cut the printed points in the book and written his own method. This is also true for medicine. As doctors we almost never go by the book, but treat patients with knowledge learnt from books but modified by our experiences.
I suffered from NAION 6 years back (I am 58, now). Ever since then, me and wife have not stopped thinking, what went wrong?
Both of us are doctors and I am an Ophthalmologist.
Retrospective Analysis (my mistakes probably): After I noticed the field defect, I immediately started Methylprednisolone and then oral steroids. But I did not stop blood pressure medicines, neither reduced them. To counteract my severe anxiety I took anti anxiety medicines, which may have further caused drop in my blood pressure. This may have contributed to continuous damage with loss of my upper, nasal and central field. So, retrospectively, I feel I should have reduced BP medicines immediately, because it is said that that NAION occurs due to failure of auto regulation of optic nerve perfusion, contributed by low blood pressure. I should have also stopped anti anxiety medicines in time and should have fought my anxiety with self control. However, there is one anti anxiety medicine which doesn't lower blood pressure significantly. This we can take almost daily in low doses. I will share the name below.? Another factor which may have contributed to my NAION is stress.?I am still trying to control it to the my maximum capacity. Prior to NAION, my intraocular pressure (IOP) used to come high on Non Contact Tonometer (NCT), but were always normal by Applanation and Schiotz Tonometry. I should have started IOP lowering medicines prior to my NAION.?
What I am doing now? - I am taking my BP medicines at 5 AM and 5 PM. I have reduced my BP medicines than prior to NAION. Regularly monitoring BP by Omron Electronic BP instrument. Our BP is higher immediately after getting up. So don't increase the dose until it regularly crosses 140 / 90 after getting up in the morning. You have to self titrate your BP medicines by regularly monitoring it. No doctor can do it for you. Make a chart of your BP readings, then consult a doctor for continuing the same medicines or increase / decrease the dose. In my opinion, we should maintain BP between 110 / 70 and 140 / 90. Not too low nor too high.
- I am taking Lipid lowering medicines (Statins).?
- I am taking half tablet of Ecosprin (Aspirin) 75 mg. When I was taking full 75 mg daily, I started bleeding from gums while brushing. In my opinion lower regular dose works the same way as higher but with less risk of bleeding. Again, no doctor will agree to this because they go by the book. Pill cutter is available on Amazon. Don't worry, if the pill gets cut in two unequal halves.
- I was using Brimonidine eye drops (Alphagan Z, Allergan) three times a day both eyes, ever since my NAION attack. This brings me to my one very significant observation. My IOP with NCT were still higher in both eyes. My CCT (central corneal thickness) was normal and OCT was as expected. Retinal Nerve Fiber Layer (RNLF) thickness was significantly reduced in my affected eye (expected) but was still within normal range barring 2 quadrants in RNLF study. So, I started Lumigan 0.01 (Bimatoprost, Allergan) at bed time and switched to Simbrinza eye drops (Brinzolamide + Brimonidine, Alcon) twice daily, on my own. This, I started around one and a half months back. I used to suffer from frequent headaches and migraine for which I had to take pain killers almost alternate day. But ever since I started these IOP lowering medicines the frequency of my headaches have dramatically reduced to once a week and that responds to just Crocin Pain Relief (Paracetamol 650 + Caffeine 50). For years and years (maybe since my college days), I suffered from headaches, tried almost everything. (A word of caution here, all Migraine preventing medicines can lower your BP). Being an Ophthalmologist and a doctor I can get the medicines easily and I can start and stop the medicines and experiment whenever I want, for which probably, you have to work in close contact with your Ophthalmologist or NO. Again, no doctor will agree to my this observation. Tell your doctor that I don't have narrow angles on gonioscopy, they are wide open and I am a myope. So chances of subclinical angle closure glaucoma are zero.
- I take anti oxidants and vitamins daily, though they have no proven role in NAION prevention. Citicholine has no role in NAION.
- I take Clonazepam 0.25 mg maximum during the day to help my self control over anxiety. Either, I take one third in the morning and one third in the evening or I take half in the evening around 6 pm. This dose doesn't lower your BP and helps you control your anxiety. Clonazepam is a brittle medicine. Can be broken easily. Again, don't worry for unequal halves.
My opinion on optic nerve head perfusion: There may be a critical balance between your BP and IOP. An increased IOP and reduced BP can affect your optic nerve perfusion. So control your BP between 140 / 90 and 110 / 70 and your IOPs below 20.
I hope this may be of help to some.
Aloke
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Wow Greg! Can you believe that I went through the exact same thing!!! I also had a total collapse of my retina in the same eye! I also see like I am looking through mesh! I will show your post to my doctor and ask him to check my eyes for the same issues as yours. Thank you soooo much?
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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. ?
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Hi Clare. Thank you so much. I am 62 years old and my name is Clare in Italian! Lol I appreciate all this group has to offer.?
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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
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