Eyes and Neuropathy

Posted by Rachel, Volunteer Mentor @rwinney, Jun 17, 2020

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.

Interested in more discussions like this? Go to the Eye Conditions group.

@jesfactsmon, Hi Hank. Thank you. I am glad you found a solution to beat your motion sickness. It is no fun! For me, I tolerate and do what I need to do to get closer to a resolution. My recovery has been in stages with a slow and positive progression. I went from a wheelchair to a quad cane. I feel it is the motion sickness that is holding me back. My neuropathy resulted from one of my surgical repairs for the AVM. So I am dealing with this additional problem as well. The good news is that it never got worse since the underline issue was the surgery.
Yes, exactly, for the motion sickness I like being still. My husband and I live in the country. The long rides can be difficult depending on the bumpiness of the roads. I like the highways, lol. This coronavirus has taught me to do things virtually more often which has been a great help for me, much easier! Luckily my disability is physical and not cognitive. I am still able to tutor math but now I do more of it online at home. I appreciate the kind words🤓. We do what has to be done to keep going. Wish you well.

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@avmcbellar

@jesfactsmon, Hi Hank. Thank you. I am glad you found a solution to beat your motion sickness. It is no fun! For me, I tolerate and do what I need to do to get closer to a resolution. My recovery has been in stages with a slow and positive progression. I went from a wheelchair to a quad cane. I feel it is the motion sickness that is holding me back. My neuropathy resulted from one of my surgical repairs for the AVM. So I am dealing with this additional problem as well. The good news is that it never got worse since the underline issue was the surgery.
Yes, exactly, for the motion sickness I like being still. My husband and I live in the country. The long rides can be difficult depending on the bumpiness of the roads. I like the highways, lol. This coronavirus has taught me to do things virtually more often which has been a great help for me, much easier! Luckily my disability is physical and not cognitive. I am still able to tutor math but now I do more of it online at home. I appreciate the kind words🤓. We do what has to be done to keep going. Wish you well.

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@avmcbellar I am glad you feel you are on a positive trajectory. That's always nice. You refer to AVM. I looked that up and found it stands for Arteriovenous Malformations, is that correct? And you had this in your brain and it ruptured, and it now causes the double vision? Is there any chance it will heal on its own so you would not need the surgery? That would be the best obviously. But I think living with double vision is not acceptable and I'm guessing you'd agree. If the surgery has a reasonably high success rate and you find a surgeon you like, I think I would go for it. Even with a prism it would be a preferable outcome. Sorry, I know no surgery decision deserves a flip answer. Obviously you can only do what you think is best. I wish you all the best with this.

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@avmcbellar

Hi Rachel. I have neuropathy but do not know if it affects my eyes. I do have a neurological disorder where the nerves cannot control my eye muscles particularly the motion looking inward and downward. Those muscles are stronger in one eye causing each eye to have a different image, hence the double vision. I have learned that eye strain can cause dry eye and photophobia. My double vision is due to the AVM. I was told at first to let my eyes settle down which I did. The distance between the images of each eye improved but they never conformed. After struggling 2 years, I developed the dry eye and photophobia. I have limited the use of sunglasses to only outdoors since total darkness for long periods of time can worsen the condition. Because of the double vision, I experience motion sickness which stops me from many activities. I am hoping to find a surgeon that can correct my eye positions to eliminate the double vision causing the motion sickness.
Sounds like you have also experienced eye strain causing the dryness and photophobia. Have you seen another ophthalmologist for a second opinion In getting any relief? How long have you been dealing with the dryness and photophobia? Did the condition worsen?
My neuro ophthalmologist discussed surgery being a possibility but there are risks involved I need to think about. I am sure you have experienced that too with your eye surgeries. Any surgical procedure to correct my eye muscles will be permanent. I don’t know if this information provided any help for you. Keep searching. I hope you will find answers to help you. Good luck and I wish you well. By the way, I received my new online glasses with the clip-ons for sunglasses. The magnification on each lens is perfect. I like the bifocal lines better because I do not get the dizziness as I did with the progressives.

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@avmcbellar Greats news about your new glasses with bifocals! I'm glad they work better for you. You deserve some relief with that double vision and motion sickness stuff. No fun and I know surgery would be a big step for you. I did see a neuro opthamologist 3 years after my surgeries and I was told the reason for my worsening photophobia was scar tissue left from surgeries, and having blue eyes. Nothing to be done about it other than what I already do. Which is why forums like Connect are so helpful. We share and help one another through experiences and knowledge. I'm on the fence about getting a 2nd opinion now that I have neuropathy and notice the dry eye and photophobia worsening. Again, probably just…it is what it is. Really up to me if I want to pay a co-pay for reiteration of what I already most likely know. Orrrrrr….there is always that wishful hope the Dr. has some revelation of helpfulness or at the very least, reaffirms my suspicions. How did you like the links I attached the other day? Did you find the information helpful or eye opening at all?

Rachel

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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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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.

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@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

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@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?

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@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

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@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

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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

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