Eyes and Neuropathy

Posted by rwinney @rwinney, Jun 17 7:11am

I would love to hear from folks who have peripheral neuropathy and eyes problems such as worsening dry eye and photophobia (light sensitivity). Has anyone been to a neuro opthamologist for this and been advised of the correlation? What did you learn?

My eyes have mitigating circumstances…. beginning with Fuchs Dystrophy (cornea disease) requiring cataract and cornea transplants, intractable migraine and Small Fiber Polyneuropathy…all of which play off each other. Photophobia, for me, has been constant since prior to eye surgeries and increasingly worse after. Migraines create photophobia and vice versa. SFN is nerve damage/dysfunction which for me has created hyperalgesia (overactive and hyper sensitivity). The cornea contains the highest number of small fibers in your entire body. My ongoing dry eye is developing along with intense flares of light sensitivity. I feel like a vampire…it puts me down, to bed, in hiding. As I explore how to tackle worsening dry eye, I came across this link that opened my mind further and thought maybe it might help some of you who have dry eye and neuropathy.

Hi Hank @jesfactsmon. You are correct! My arteriovenous malformation ruptured at the connecting point involving 5 blood vessels in my brain. I had 3 surgeries in total for the repair. I was left with neuropathy after my last surgery. It is going on 4 years since my rupture. I believe my eyes will not improve further on their own because I am past the healing stage. That is why the ophthalmologist told me to let my eyes settle at first. Because of the nerve damage, my eyes cannot align, giving me the double vision. On my next visit to the ophthalmologist, I will ask detailed questions about the strabismus surgery and recommendations of surgeons. I was told my surgery would be very sensitive and any over adjustment could lead to double vision in the opposite direction meaning instead of one eye having a higher image that same eye will have a lower image. The surgery will be permanent. No adjustment could be made. The only positive outcome will be that a prism worn in my glasses may help whereas now because of my eye torsion no prism will correct the double vision. I am planning to go through the surgery once I find out more information. Like you had said go for it if the success rate is good. I am hoping after a year or so eye surgery procedures will improve with more favorable outcomes. Thank you for your advice. I appreciate your input and interest. Always a pleasure to hear from you. Let me know if you run across an eye surgeon with a great success rate.

Liked by Hank

REPLY

Hi Rachel, @rwinney. Nice to hear from you. You are right! It is what it is so I am very careful with my decisions. I know how some doctors can be. We do our best with the information we are given. Plus, we know our bodies better than any doctor. I am sorry I did not see your links. I will check them out. Sorry to hear your scar tissue is the cause of your worsening photophobia. It is not fun having eyes sensitive to light. I am always looking to find ways to help. I know blue light or electronic devices do not make my photophobia worse. I found sunglasses outdoors to be very helpful. Thank you, having prescription glasses with the clip-ons has made life easier. I close one eye to stop the double vision for now. That is how I write and use electronic devices.
You can always go see other ophthalmologists for their opinion. It won’t hurt to listen but be prepared to ask questions to help yourself. Take advantage of the resources available to you. You never know if one may shed the light for you to further research your condition. Medical care is always changing for the better. You will never know if a new breakthrough arises unless you ask. Won’t hurt.
I don’t say much to my medical doctors but they do listen to me because they know I am knowledgeable and serious about my health. I believe that is the reason I have survived. I am always looking for the next step to improve on my condition. I feel I owe it to everyone that cares, especially my family. Take care of yourself and continue to be your own advocate.

REPLY
@avmcbellar

Hi Hank @jesfactsmon. You are correct! My arteriovenous malformation ruptured at the connecting point involving 5 blood vessels in my brain. I had 3 surgeries in total for the repair. I was left with neuropathy after my last surgery. It is going on 4 years since my rupture. I believe my eyes will not improve further on their own because I am past the healing stage. That is why the ophthalmologist told me to let my eyes settle at first. Because of the nerve damage, my eyes cannot align, giving me the double vision. On my next visit to the ophthalmologist, I will ask detailed questions about the strabismus surgery and recommendations of surgeons. I was told my surgery would be very sensitive and any over adjustment could lead to double vision in the opposite direction meaning instead of one eye having a higher image that same eye will have a lower image. The surgery will be permanent. No adjustment could be made. The only positive outcome will be that a prism worn in my glasses may help whereas now because of my eye torsion no prism will correct the double vision. I am planning to go through the surgery once I find out more information. Like you had said go for it if the success rate is good. I am hoping after a year or so eye surgery procedures will improve with more favorable outcomes. Thank you for your advice. I appreciate your input and interest. Always a pleasure to hear from you. Let me know if you run across an eye surgeon with a great success rate.

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Will let you know if we come across a particularly good one. My wife may have surgery someday in the not-to-distant-future (probably not soon enough for you though possibly). Since you are in Fla. and we are in Tennessee it might be farther than you want to travel anyway (but maybe not?). But you have all my best wishes for a set of well-aligned pair of eyes after your surgery whenever you do have it.
Best, Hank

REPLY
@jimhd

I had cataract surgery on both eyes 2 years ago, hoping it would help my night driving vision. That's really no better post surgery. I've been telling my ophthalmologist for several years that I have double vision, and he finally listened a few months ago, and the only treatment offered is a prism in my right lens. Sometimes it brings the images from both eyes into alignment. Oncoming headlights are still awful. He's agreed with me that there could be neuropathic involvement.

I saw him again a few weeks ago, but adjusting the prism just one level didn't make a noticeable difference. Going forward, he said I'll just have to get used to it. I see a single image some of the time, but after I focus for a few seconds, it goes double. Peripheral vision is always double, with the second image below and to the right of the original one, and it doesn't matter which eye I cover – the image in my left eye is in a different place than the right. Maybe I should see if there's a neuro-ophthalmologist anywhere in Oregon.

My eyes get really tired when I read either paper or screen print. But it doesn't seem that there's any solution. I'm starting to hear more often that any problem I have, it doesn't matter what problem, is because I'm getting older. That may be true some of the time, but it's starting to come across as the easiest answer.

I don't use eye drops very often during the day, though it would probably be a good idea, but I use gel drops every night.

I'm not sure what's going to happen with my night driving. It's kind of scary, especially on two lane roads, which is all of them where I live. I don't often drive at night, other than coming home from the evening church service, and it's not scheduled to restart anytime soon.

Jim

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@jimhd Hi Jim,
Many people with neurological problems have this kind of vision problem. Have you considered seeing a neuro-opthmalogist? A specialist might be able to provide you with some more suggestions. Were any eye exercises suggested?

REPLY
@avmcbellar

Hi Rachel, @rwinney. Nice to hear from you. You are right! It is what it is so I am very careful with my decisions. I know how some doctors can be. We do our best with the information we are given. Plus, we know our bodies better than any doctor. I am sorry I did not see your links. I will check them out. Sorry to hear your scar tissue is the cause of your worsening photophobia. It is not fun having eyes sensitive to light. I am always looking to find ways to help. I know blue light or electronic devices do not make my photophobia worse. I found sunglasses outdoors to be very helpful. Thank you, having prescription glasses with the clip-ons has made life easier. I close one eye to stop the double vision for now. That is how I write and use electronic devices.
You can always go see other ophthalmologists for their opinion. It won’t hurt to listen but be prepared to ask questions to help yourself. Take advantage of the resources available to you. You never know if one may shed the light for you to further research your condition. Medical care is always changing for the better. You will never know if a new breakthrough arises unless you ask. Won’t hurt.
I don’t say much to my medical doctors but they do listen to me because they know I am knowledgeable and serious about my health. I believe that is the reason I have survived. I am always looking for the next step to improve on my condition. I feel I owe it to everyone that cares, especially my family. Take care of yourself and continue to be your own advocate.

Jump to this post

@avmcbellar Thank you for the advice. I may search a new neuro opthamologist. When I was first diagnosed with Small Fiber Polyneuropathy, my research lead me to find there is a cornea confocal microscopic test to prove neuropathy via cornea. as it contains the most small fibers in the body. My neurologist told me no bother because I had skin biopsy and the equipment is so expensive that noone in my area has it. I wonder if Mayo has it? Probably. I just always felt that would be a better look into my neuropathy and eye relationship.

I wanted to mention that I use different shades of sunglasses that fit over my regular glasses. One pair is a lighter tint which I can use inside. Of course, if you are depending on prescription sunglasses, that may get costly. I gave up on prescriptio ones because I needed various shades and was too costly.

I think of you as I type this because it's very challenging….my eyes go screwy and its taxing. I pay for using my eyes but I do it anyway! I too have done the one eye closed bit. I'm so sorry you have to do it all the time. Oh the challenges! If you notice my profile picture…my hat reads SIMPLY STRONG (backwards). I'm so proud to be associated with Connect and be influenced by fellow SIMPLY STRONG people.

Best to you,
Rachel

REPLY
@rwinney

@avmcbellar Thank you for the advice. I may search a new neuro opthamologist. When I was first diagnosed with Small Fiber Polyneuropathy, my research lead me to find there is a cornea confocal microscopic test to prove neuropathy via cornea. as it contains the most small fibers in the body. My neurologist told me no bother because I had skin biopsy and the equipment is so expensive that noone in my area has it. I wonder if Mayo has it? Probably. I just always felt that would be a better look into my neuropathy and eye relationship.

I wanted to mention that I use different shades of sunglasses that fit over my regular glasses. One pair is a lighter tint which I can use inside. Of course, if you are depending on prescription sunglasses, that may get costly. I gave up on prescriptio ones because I needed various shades and was too costly.

I think of you as I type this because it's very challenging….my eyes go screwy and its taxing. I pay for using my eyes but I do it anyway! I too have done the one eye closed bit. I'm so sorry you have to do it all the time. Oh the challenges! If you notice my profile picture…my hat reads SIMPLY STRONG (backwards). I'm so proud to be associated with Connect and be influenced by fellow SIMPLY STRONG people.

Best to you,
Rachel

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@rwinney Rachel and @avmcbellar (prepare yourselves for possibly dumb question). Just wondering, if you guys occasionally (or often) close one eye to read or see do you think you might benefit by getting an eyepatch? Seems less tiresome than using muscles to keep an eye closed. Also, Rachel, is Simply Strong the fitness outfit based in Oregon? Just wondering. Best, Hank

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I'm not sure Hank. My Aunt bought it for me last year from a local retail store here in NY. I love it! There are days I wear it to remind myself. … I got this.

No eye patch for me. Wore enough of them after my surgeries. Light makes me do the eye closed thing.

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@rwinney

I'm not sure Hank. My Aunt bought it for me last year from a local retail store here in NY. I love it! There are days I wear it to remind myself. … I got this.

No eye patch for me. Wore enough of them after my surgeries. Light makes me do the eye closed thing.

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@rwinney HI Racheal I too have to wear dark eyeglasses when out since I am sensitive to the sun and have macular degeneration . I have lighter sunglasses for inside . Have you looked into the Braille institute this is the organization I got my sunglasses from —free. They came to my apt and talked with me . I also have a thing you put on a cup to let you know how much water to pour in so you dont burn yourself when for tea or coffee . All free . A friend who legally blind they fixed her microwave up with big numbers so she can use it . All from the Braille institute . This organization works with them Im sure you probably have something similar in N.Y. Stay safe Linda

Liked by rwinney

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@lioness

@rwinney HI Racheal I too have to wear dark eyeglasses when out since I am sensitive to the sun and have macular degeneration . I have lighter sunglasses for inside . Have you looked into the Braille institute this is the organization I got my sunglasses from —free. They came to my apt and talked with me . I also have a thing you put on a cup to let you know how much water to pour in so you dont burn yourself when for tea or coffee . All free . A friend who legally blind they fixed her microwave up with big numbers so she can use it . All from the Braille institute . This organization works with them Im sure you probably have something similar in N.Y. Stay safe Linda

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Thank you Linda. Yes, my mother-in-law utilizes these services and also has macular degeneration. I'm doing ok with my sunglasses but do need to invest in better quality ones. Be well and stay safe.
Rachel

Liked by lioness

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@hopeful33250

@jimhd Hi Jim,
Many people with neurological problems have this kind of vision problem. Have you considered seeing a neuro-opthmalogist? A specialist might be able to provide you with some more suggestions. Were any eye exercises suggested?

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@hopeful33250 Hi Teresa. I looked online and see that the neuro-ophthalmologists are in Portland. My ophthalmologist didn't suggest anything except the prism, which does bring my right eye in alignment with the left. His only statement was that if/when the diplopia gets bad again I'll just have to get used to it.

I've been living with this for a while, and I've adapted, but I got tired of it. I like the doctor I have, but maybe it's time to see a specialist. I'll give it some time and see if it gets bad again. The Casey Eye Institute has a location in Portland at OHSU.

Jim

Liked by Hank

REPLY
@jesfactsmon

Will let you know if we come across a particularly good one. My wife may have surgery someday in the not-to-distant-future (probably not soon enough for you though possibly). Since you are in Fla. and we are in Tennessee it might be farther than you want to travel anyway (but maybe not?). But you have all my best wishes for a set of well-aligned pair of eyes after your surgery whenever you do have it.
Best, Hank

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@jesfactsmon Hank, I welcome names of eye surgeons and I will follow up with any recommendations as the time approaches. I will like to do the surgery in a year and a half. The locations in the US does not matter if I can find a surgeon who has good outcomes with lots of practice. My husband and I have a travel trailer so the location won’t be a problem. He is able to drive. I prefer Florida but will consider a surgeon elsewhere that meets my criteria. You are not far in Tennessee. Years ago I drove through Knoxville where I purchased a Vols sweatshirt at the University. Thank you for your best wishes. The eye surgery will be my next concentration for eliminating the motion sickness so I can be active once again. I hope your wife can find the right surgeon to help her. It just takes research and each others help. Best of luck to both of you.

Liked by Hank

REPLY
@jimhd

@hopeful33250 Hi Teresa. I looked online and see that the neuro-ophthalmologists are in Portland. My ophthalmologist didn't suggest anything except the prism, which does bring my right eye in alignment with the left. His only statement was that if/when the diplopia gets bad again I'll just have to get used to it.

I've been living with this for a while, and I've adapted, but I got tired of it. I like the doctor I have, but maybe it's time to see a specialist. I'll give it some time and see if it gets bad again. The Casey Eye Institute has a location in Portland at OHSU.

Jim

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Hi @jimhd Jim, I can recommend one excellent opthamologist in Portland, Robert W. Bentley MD. Linda and I went to him for several years and he was such a great doctor. So thoughtful and so smart, and really a nice guy to boot. Not sure if he is a neuro opthamologist. You might not need him but I would recommend him to anyone. We really miss him now! Hank

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@jesfactsmon

Hi @jimhd Jim, I can recommend one excellent opthamologist in Portland, Robert W. Bentley MD. Linda and I went to him for several years and he was such a great doctor. So thoughtful and so smart, and really a nice guy to boot. Not sure if he is a neuro opthamologist. You might not need him but I would recommend him to anyone. We really miss him now! Hank

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@jesfactsmon Thanks Hank. I think that my next step will be to find a good neuro-ophthalmologist. Hopefully that won't be necessary for a couple of years.

One of the problems with the prism is that it's only in my primary glasses, not my sunglasses – I can wear flip ups – or my computer/piano playing ones. I suppose I could spend the $170 and have the piano glasses done.

Having binocular double vision means that my eyes get tired if I do anything within my six foot social distancing bubble very long. I do most of my online stuff on my phone, and I can do it with my bifocals or I can do it for a while without glasses. It seems as though my eyes get tired either way.

My 30 minute timer just went off, telling me it's time to move a sprinkler. It's an amazingly beautiful day here, in the 70s, with a light breeze. I finished the trimmer work, and decided I needed to sit in the shade during this one 30 minute set.

I appreciate your input in various discussions.

Jim

REPLY
@rwinney

@avmcbellar Thank you for the advice. I may search a new neuro opthamologist. When I was first diagnosed with Small Fiber Polyneuropathy, my research lead me to find there is a cornea confocal microscopic test to prove neuropathy via cornea. as it contains the most small fibers in the body. My neurologist told me no bother because I had skin biopsy and the equipment is so expensive that noone in my area has it. I wonder if Mayo has it? Probably. I just always felt that would be a better look into my neuropathy and eye relationship.

I wanted to mention that I use different shades of sunglasses that fit over my regular glasses. One pair is a lighter tint which I can use inside. Of course, if you are depending on prescription sunglasses, that may get costly. I gave up on prescriptio ones because I needed various shades and was too costly.

I think of you as I type this because it's very challenging….my eyes go screwy and its taxing. I pay for using my eyes but I do it anyway! I too have done the one eye closed bit. I'm so sorry you have to do it all the time. Oh the challenges! If you notice my profile picture…my hat reads SIMPLY STRONG (backwards). I'm so proud to be associated with Connect and be influenced by fellow SIMPLY STRONG people.

Best to you,
Rachel

Jump to this post

Hi Rachel @rwinney. Your positive attitude alone will get results for you. I think you are awesome! We do what we need to do to keep going. You won’t know unless you try, is a good attitude to have. Great idea to use a lower tint for sunglasses inside. I am trying to not use any tinting inside for now. I don’t want my use to get used to the darkness. I read long periods of darkness can worsen the photophobia. I did wear shades in the house before. My 20 pound pet house rabbit is almost an adult. We got him 4 months ago. He is currently shedding. His new coat of fur is a much darker shade, lol. I know rabbits try to adapt to their environment to be undetectable for a safety measure. I had no idea how dark the room was.
Closing one eye helps. I take breaks often, but you are right, many times we pay for using our eyes. Difficult to do things without them.

Liked by rwinney, Hank

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@jesfactsmon

@rwinney Rachel and @avmcbellar (prepare yourselves for possibly dumb question). Just wondering, if you guys occasionally (or often) close one eye to read or see do you think you might benefit by getting an eyepatch? Seems less tiresome than using muscles to keep an eye closed. Also, Rachel, is Simply Strong the fitness outfit based in Oregon? Just wondering. Best, Hank

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Hank @jesfactsmon, not a dumb question at all. I can speak for myself with my experience using an eye patch. After a few months into my AVM, my neuro ophthalmologist told me I could either wear an eye patch, cover up the glass lens with frosty tape, or wear clear glasses while my eyes settled. It didn’t matter because there was no sufficient data to prove what was best. It was unknown how much the eyes would correct themselves during the healing time. I decided to use the black eye patch. After using it a month, I tried to see with both eyes but the image of the previously covered eye was very dark. It remained that way. It was very bothersome so I never used the patch again. I then tried covering the glass lens with frosty tape. It allowed the light in while eliminating the double vision. Thankfully, the dark image eventually went away. I used the frosty tape for a couple months until my next eye visit. When my ophthalmologist examined my eyes and said, “let’s see how your eyes adjusted”, I thought how would they adjust when my eye was covered? I was told to give it longer for my eyes to settle. As soon as I got home I removed the frosty tape and only wore the glasses. After a while I went back to the frosty tape because the double vision became too much for me. I was fine for a while until the eye dryness and photophobia kicked in.
Good idea to wear a patch but my eye got used to the darkness.

Liked by Hank

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