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 Rachel @rwinney, Great timing on this new discussion. I have an appointment with my primary care doctor and I was going to ask him for a referral to Mayo Clinic Rochester for an eye exam. I had the start of cataracts when my eyes were checked in 2017 at Mayo and I tried to get another appointment in 2019 but they were booked out for the year so I had one done at local eye glasses place. They told me the cataracts would be about a 2 out of 4 level if 4 was the worst. I got new glasses then but the past 6 months or so my eyes seem to be getting worse. It's harder driving at night or when it's sunny and my eyes don't focus well when reading or using the computer even with my computer glasses which I had made specifically for wearing when using the computer.

I don't have any eye pain but there are times when the eyes are tearing up when strained.

Liked by lorirenee1, rwinney

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@johnbishop

Hi Rachel @rwinney, Great timing on this new discussion. I have an appointment with my primary care doctor and I was going to ask him for a referral to Mayo Clinic Rochester for an eye exam. I had the start of cataracts when my eyes were checked in 2017 at Mayo and I tried to get another appointment in 2019 but they were booked out for the year so I had one done at local eye glasses place. They told me the cataracts would be about a 2 out of 4 level if 4 was the worst. I got new glasses then but the past 6 months or so my eyes seem to be getting worse. It's harder driving at night or when it's sunny and my eyes don't focus well when reading or using the computer even with my computer glasses which I had made specifically for wearing when using the computer.

I don't have any eye pain but there are times when the eyes are tearing up when strained.

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@johnbishop Sorry to hear things are getting worse for your eyes. Both cataracts and neuropathy seem to hold true for having the ability to cause what your feeling. I've known the facts about cataracts, surmised the neurological connection with eyes but after researching a bit further on the two, I now understand the hypersensitivies as a whole from neuropathy. Once again, no chame changer on what we do about it all but definitely some more understanding of our bodies and diseases. Good luck on getting scheduled with Mayo.

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@rwinney

@johnbishop Sorry to hear things are getting worse for your eyes. Both cataracts and neuropathy seem to hold true for having the ability to cause what your feeling. I've known the facts about cataracts, surmised the neurological connection with eyes but after researching a bit further on the two, I now understand the hypersensitivies as a whole from neuropathy. Once again, no chame changer on what we do about it all but definitely some more understanding of our bodies and diseases. Good luck on getting scheduled with Mayo.

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Thanks Rachel, I also forgot to mention that I've been a little concerned since I had the Mayo GeneGuide test done which showed that I was increased risk for Age Related Macular Degeneration ( CFH ARMS2 gene). I was sad to see that the Mayo GeneGuide was dropped by Mayo but my data is still accessible and I have saved the reports offline.

Liked by sunnyflower

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@johnbishop

Thanks Rachel, I also forgot to mention that I've been a little concerned since I had the Mayo GeneGuide test done which showed that I was increased risk for Age Related Macular Degeneration ( CFH ARMS2 gene). I was sad to see that the Mayo GeneGuide was dropped by Mayo but my data is still accessible and I have saved the reports offline.

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Oh, interesting. Keep me (us) posted on your situation. So much is age related however, having a predisposition can be poor luck. 🙁

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@rwinney

Oh, interesting. Keep me (us) posted on your situation. So much is age related however, having a predisposition can be poor luck. 🙁

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As you know Rachel, Linda has Fuchs as well as photophobia and she also has dry eye. The photophobia is getting progressively worse as is the Fuchs. Her eyesight is not great but her eye doctor has told her she should wait for the corneal transplants for the Fuchs until she needs to have her cataracts dealt with, whenever (he decides) that will be. But for the dry eye Linda takes a product called MURO 128 5 Percent SOLUTION which helps her a lot. I think she uses it once or twice per day. Thanks for the links, will take a look at them Hank.

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@jesfactsmon

As you know Rachel, Linda has Fuchs as well as photophobia and she also has dry eye. The photophobia is getting progressively worse as is the Fuchs. Her eyesight is not great but her eye doctor has told her she should wait for the corneal transplants for the Fuchs until she needs to have her cataracts dealt with, whenever (he decides) that will be. But for the dry eye Linda takes a product called MURO 128 5 Percent SOLUTION which helps her a lot. I think she uses it once or twice per day. Thanks for the links, will take a look at them Hank.

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@jesfactsmon Oh good, I'm glad she has found something that helps. I've heard the Muro drops work well for some. I'm using up my Systane now, which I prefer over Refresh, and the plan is… to go with preservative free next purchase. I found the links helpful.

HI to Linda from me!!! Hoping today is a tolerable day for her. 😁

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@rwinney

@johnbishop Sorry to hear things are getting worse for your eyes. Both cataracts and neuropathy seem to hold true for having the ability to cause what your feeling. I've known the facts about cataracts, surmised the neurological connection with eyes but after researching a bit further on the two, I now understand the hypersensitivies as a whole from neuropathy. Once again, no chame changer on what we do about it all but definitely some more understanding of our bodies and diseases. Good luck on getting scheduled with Mayo.

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@johnbishop @rwinney Hi guys, I am so clueless about eye problems, that I can add nothing to what you have written about your poor eyes. I just wish you luck, and it seems that Neuropathy can leave no stone unturned. Terrible. I may be writing briefer posts now, because this DRG trial is not easy. Just regaining strength from surgery itself, and still working on calibrating the electricity in the DRG wires. Not for sissies, and can make the pain even worse than how it started. But wires were calibrated again today. Feeling better again. I will post when i know more…Love to you guys, Lori

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Lori – oops disregard my previous question to you. I found my answer right here. Keep the faith. You are a strong woman and will get through this. 💪🏼 My heartfelt wishes of positivity to you. 💕
Rachel

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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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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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@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 I can empathise about your feelings of motion sickness from double vision. I don't deal with it now but experienced it in 1999 when I had a sudden attack of vertigo accompanied by double vision (I was subsequently diagnosed with MS) and I remember how that morning I could not move. Literally could not move or I'd immediately have to throw up the nausea was so intense. I can't imagine dealing with that on an ongoing basis. My heart goes out to you and I hope you can find a solution or that this eye muscle surgery helps (if you decide to have it). Best, Hank

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@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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