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Mentor

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 Support Group.

avmcbellar | @avmcbellar | Jun 19, 2020
In reply to @jimhd "@hopeful33250 Hi Teresa. I looked online and see that the neuro-ophthalmologists are in Portland. My ophthalmologist..." + (show)
@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 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
2 replies
Hank | @jesfactsmon | Jun 20, 2020
In reply to @avmcbellar "Hi Rachel @rwinney. Your positive attitude alone will get results for you. I think you are..." + (show)
@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.

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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

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2 replies
avmcbellar | @avmcbellar | Jun 20, 2020
In reply to @jimhd "@jesfactsmon Thanks Hank. I think that my next step will be to find a good neuro-ophthalmologist...." + (show)
@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

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@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.

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1 reply
Mentor
Rachel, Volunteer Mentor | @rwinney | Jun 20, 2020
In reply to @jesfactsmon "That is so true. I think if nothing else worked on my body, if just my..." + (show)
@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
avmcbellar | @avmcbellar | Jun 20, 2020
In reply to @jesfactsmon "That is so true. I think if nothing else worked on my body, if just my..." + (show)
@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

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@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
1 reply
lois6524 | @lois6524 | Jun 20, 2020

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
3 replies
Hank | @jesfactsmon | Jun 20, 2020
In reply to @lois6524 "not sure if this applies -- couple of years ago I had what I thought was..." + (show)
@lois6524

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

Jump to this post

Hi Lois, I may know exactly what you are referring to (or not). My wife had vertigo and she and I used something on her called the "Epley Maneuver" to get the stray crystals back into their correct locations in the inner ear. We did this by referring to a Youtube video. I don't know which one we watched but here is one I found that goes through the same steps essentially:
https://www.youtube.com/watch?v=BtT2PDJVXlk
Anway, it sounds like you might be describing this Epley thing that we did or something similar. It was totally easy and successful when we did it. Regards, Hank

REPLY
2 replies
Mentor
Rachel, Volunteer Mentor | @rwinney | Jun 20, 2020
In reply to @avmcbellar "@jesfactsmon Hi Hank, absolutely but you know we always want to improve on what we have...." + (show)
@avmcbellar

@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!

Jump to this post

Touche!

REPLY
lois6524 | @lois6524 | Jun 20, 2020

it looks similar, however my therapist had a device which she put over my eyes and she could tell on a monitor where the crystals were, and a bunch of other things -- and I had exercises to do at home in between visits

REPLY
avmcbellar | @avmcbellar | Jun 20, 2020
In reply to @lois6524 "not sure if this applies -- couple of years ago I had what I thought was..." + (show)
@lois6524

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

Jump to this post

Hi @lois6524 thank you. I appreciate your input. I am glad you found a solution with only a few visits. After a while in dealing with my balance issue and motion sickness, I decided to try vestibular therapy as well. Luckily I found a physical therapist with over 20 years experience in vestibular treatments. We tried the different exercises to move the crystals in my ears. I was so determined to improve that I followed all the instructions including doing additional exercises at home. I gave it a week but saw no improvement at all. Instead I still had the same motion sickness but now I had a terrible headache. Needless to say, i stopped the therapy. A couple days later my headache went away. I am glad I gave it a shot. One less attempt on my list and I know now to move onto another. Thank you for your suggestion. When I look for a neurologist I will ask for one that deals with neuropathy. I may be able to get more info. My neuro surgeon who caused my neuropathy told me it would eventually go away. It is going on 4 years now and I still have it. It hasn’t gotten worse. Maybe slightly improved, hard to tell. Keep on advocating for yourself. I am glad to hear you are looking out for you regarding your health.

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