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.

@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?

Jump to this post

@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

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

Jump to this post

@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.

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

Jump to this post

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

REPLY
@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

Jump to this post

@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.

REPLY
@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

Jump to this post

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.

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

Jump to this post

Hi Jim @jimhd, exactly I had enough of my double vision after waiting so long for my eyes to settle. Unfortunately, there are very few neuro ophthalmologist near me to get a second opinion. You deserve some answers. Why put up with the diplopia if you don’t have to? It is easier for the doctor to say use a prism or just deal with it rather than risking surgery especially if the doctor does not feel confident in performing the surgery. I get the same feeling from my doctor. I have done research for the different types of strabismus surgeries. The eye muscles involved are operated on to make them either shorter or longer until both eyes become aligned. Look for strabismus surgeons. That might help with your search. If it were me, I would investigate my options rather than suffer. Good luck with your search in finding the right doctor!

REPLY
@avmcbellar

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.

Jump to this post

That is so true. I think if nothing else worked on my body, if just my eyes and legs worked, i could sort of get by. Just be a walking pair of eyes. Life would still be interesting if that was all you had, but obviously you'd need the other stuff too. As horrible as PN can be and it can be just awful I know, you must admit it's great to have arms, legs and eyes.

It's obvious I have nothing to say, isn't it? Happy Saturday everyone! Hank

REPLY
@jimhd

@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

Jump to this post

@jimhd Hi Jim, there are sunglasses that are worn over regular glasses. I had bought a pair for my mother. Would those be an option for you? I don’t currently have a prism in my glasses but I do wear the clip-ons for sunglasses. It can be very costly getting prescription sunglasses with a prism.

REPLY
@jesfactsmon

That is so true. I think if nothing else worked on my body, if just my eyes and legs worked, i could sort of get by. Just be a walking pair of eyes. Life would still be interesting if that was all you had, but obviously you'd need the other stuff too. As horrible as PN can be and it can be just awful I know, you must admit it's great to have arms, legs and eyes.

It's obvious I have nothing to say, isn't it? Happy Saturday everyone! Hank

Jump to this post

@jesfactsmon Happy Saturday Hank! You are a great man. Enjoy your day and hi to Linda.

REPLY
@jesfactsmon

That is so true. I think if nothing else worked on my body, if just my eyes and legs worked, i could sort of get by. Just be a walking pair of eyes. Life would still be interesting if that was all you had, but obviously you'd need the other stuff too. As horrible as PN can be and it can be just awful I know, you must admit it's great to have arms, legs and eyes.

It's obvious I have nothing to say, isn't it? Happy Saturday everyone! Hank

Jump to this post

@jesfactsmon Hi Hank, absolutely but you know we always want to improve on what we have. I know I will never be able to get as active as I once used to be. I was thinking I could tolerate more activities by not having the motion sickness. I am lucky in a sense that my neuropathy is not becoming progressively worse since the underline cause was the surgical repair of my AVM. The problem with AVMs is not having sufficient data to be able to follow a recovery regiment because of the survival rate being so low. There can be so many different cases. The cerebral AVM can occur anywhere In the brain involving different blood vessels. Basically, I was left on my own to learn about my recovery. My medical team of neuro surgeons and doctors provided no information and answers since not much information was known.
Although common simple tasks can be challenging, I always try so my brain can form new pathways for doing things, like a toddler learning to better their skills as they develop into adulthood.
We do what is needed to make it to the next day. Each day brings a challenge no matter the ailment. I am proud of everyone for trying and keeping a positive attitude. As my husband says, giving 50% effort is only half, and half is failure. In another words, in making any attempt, put 100% effort into it for a better chance of success.
Thank you. You too, enjoy the weekend!

REPLY

not sure if this applies — couple of years ago I had what I thought was motion sickness or vertigo — saw my primary care doc and he sent me to a vestibular therapist — the crystals in my one ear had become dislodged from where they were supposed to be in the ear canals, and after about 5 or 6 treatments, it was gone and I have not had it since — I'm not saying this is your situation, but it might be worth checking — fortunately I belong to a large clinic with a large PT department, which had only 2 of these therapists — there is extra training/schooling needed for this type of therapy — good luck

on another note — when you look for a neurologist, by sure to ask for a neurologist that knows about or has treated neuropathy — the person on the phone will say, 'they all do' — NOT TRUE — it took me a long time to find a neurologist that actually knew something about neuropathy — we really do need to be our own advocate and keep asking == and so important to always take someone with you to take notes when you visit any doctor or clinic

REPLY
Please sign in or register to post a reply.
  Request Appointment