Eyes and Neuropathy

Posted by rwinney @rwinney, Wed, 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.

@jesfactsmon

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:

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

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@jesfactsmon Hi Hank yes this is what the ENT told me to do and I saw online it is the Epley method . Surprise how well it works

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@lioness I would think the ENT physician would at least let you about the crystals. Glad he sent you to a specialist.
The occurrence for balance and dizziness issues stemming from the ears is becoming more common as we age. So many of my friends have experienced the condition and without knowing how it happened. We have no way of knowing how to prevent something like this from happening. Scary!

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@avmcbellar

@helennicola finding the cause is half the battle for alleviating the problem but you won’t know unless you try to see what helps. For you, luckily you found a therapist who specialized in vertigo. Many doctors do not know. They write orders to start a therapy but it is the therapists who do the assessments, write down what they will do to help the patients meet their outcomes or goals, and have the doctor sign that document. The document becomes the orders for the therapist to follow because those instructions are approved by the doctor. The therapist can only follow orders approved by the doctor. Many times I have seen doctors approve what ever the therapist writes because they simply do not question what the therapist plans to do for the patient to meet his or her goals. I am glad the doctors allow the therapists to try since they themselves do not know. It’s all about experiences but I believe some doctors leave it up to others to learn from the experiences.
In my case, there are many variables. I do feel a pressure in my ears that maybe contribute to my balance problem. I don’t know but I keep trying different treatments to seek help. Thank you for your experience.

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@avmcbellar Did you see your ENT or just your PCP ? It was my PCP that sent me to the ENT then he sent me to the vestibular specialist . I never did see any therapist as after a 2 hr testing with the specialist he sent me back to my ENT and was told to do these exercises and only had 1 short case of dizziness since did the exercise one time and so far haven't had any problems. Anything with your ear,, nose or throat you should see a ENT per the PCP

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@lioness i saw my PCP who ordered vestibular therapy for balance and dizziness. I had gone to a therapist and did 3 exercises: the Epley maneuver, Brandt Daroff exercises, and Saccades exercises. I thought at first there was a slight improvement but the next day I got a bad headache. I tried the exercises for a week before ending the therapy. I saw no noticeable improvement. My headache went away in two days. I thought of going to see an ENT that deals with balance and dizziness but found no one in the area. I can continue to look and ask my PCP for recommendations. We know that my balance problems are not positional since I participated with the vestibular therapy. Thank you for your advice. I will look into seeing a specialist. I am not sure if my double vision also contributes to the problem.

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@avmcbellar It might make a difference to see this specialist it was a 2 hr test he did with lights, noise and a lot of other test . Much more invasive then a therapist I would think . As I said the ENT suggested it but he is the one that told me about these exercises they weren't exactly the Epley maneuver I had to lay with my head hanging over the bed to do them 2 times a day . It did the trick though .

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Hi Lioness, I don’t know if a 2hr. test is necessary to enable a specialist to figure out if you have the type of vertigo caused by misplaced crystals. My gal had me lay down with my head to the side and slightly off the table, if my eyes started moving back and forth uncontrollably she was able to diagnose me. Next, by doing a few different head maneuvers she could tell where exactly the crystals were stuck and determine which direction and position would move them to. With me, it was not always the same ear or canal but i am happy it has not returned. I did experience it for about a year and often thought it was caused by the gabapentin along with other side effects which were temporary but I don’t know for sure. I did not have to do any exercises myself, after a visit with specialist I was fine until the next bout which was probably every 2-3 months.

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@lioness

@avmcbellar It might make a difference to see this specialist it was a 2 hr test he did with lights, noise and a lot of other test . Much more invasive then a therapist I would think . As I said the ENT suggested it but he is the one that told me about these exercises they weren't exactly the Epley maneuver I had to lay with my head hanging over the bed to do them 2 times a day . It did the trick though .

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@lioness It won’t hurt for me to see an ENT doctor. When you laid down with your head hanging, did a doctor or therapist move your head with quick jerks to the left or right? That was one of the exercises I did.

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@avmcbellar

@lioness It won’t hurt for me to see an ENT doctor. When you laid down with your head hanging, did a doctor or therapist move your head with quick jerks to the left or right? That was one of the exercises I did.

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@avmcbeller No the exercises where over a period of 2 minutes turning my head from side to side . This was done morning and night . However bad it was Dr felt this was necessary . It was a pain to stay this way for 2 minutes but I got use to it . As far as my testing was . The Dr had all kinds of machines that he put me through. Staring while pictures where taken , flashing and pictures and other kinds so it was pretty through. I haven't had to do this ,like this , since just the Epley that one time . It maybe different procedures for how bad it is and how long you have had it ? But I'm glad it was done and over with .

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@helennicola

Hi Lioness, I don’t know if a 2hr. test is necessary to enable a specialist to figure out if you have the type of vertigo caused by misplaced crystals. My gal had me lay down with my head to the side and slightly off the table, if my eyes started moving back and forth uncontrollably she was able to diagnose me. Next, by doing a few different head maneuvers she could tell where exactly the crystals were stuck and determine which direction and position would move them to. With me, it was not always the same ear or canal but i am happy it has not returned. I did experience it for about a year and often thought it was caused by the gabapentin along with other side effects which were temporary but I don’t know for sure. I did not have to do any exercises myself, after a visit with specialist I was fine until the next bout which was probably every 2-3 months.

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@helencola I just responded to@ avmcbeller about this . Read the post to her .

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@lioness

@avmcbeller No the exercises where over a period of 2 minutes turning my head from side to side . This was done morning and night . However bad it was Dr felt this was necessary . It was a pain to stay this way for 2 minutes but I got use to it . As far as my testing was . The Dr had all kinds of machines that he put me through. Staring while pictures where taken , flashing and pictures and other kinds so it was pretty through. I haven't had to do this ,like this , since just the Epley that one time . It maybe different procedures for how bad it is and how long you have had it ? But I'm glad it was done and over with .

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@lioness 2 minutes is a long time. Must have been really awkward. I was dangling my head less than that and felt very uncomfortable with the dizziness. I had to close my eyes. The quick motion the therapist used worried me. It may have taken 30 secs or so to complete the entire exercise. I was happy to see the torture end, lol. Hopefully new procedures have been developed, much easier on the patient. Well, no matter the treatment I would imagine it will be difficult with dizziness.

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@avmcbellar

@lioness 2 minutes is a long time. Must have been really awkward. I was dangling my head less than that and felt very uncomfortable with the dizziness. I had to close my eyes. The quick motion the therapist used worried me. It may have taken 30 secs or so to complete the entire exercise. I was happy to see the torture end, lol. Hopefully new procedures have been developed, much easier on the patient. Well, no matter the treatment I would imagine it will be difficult with dizziness.

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@avmcbellar Yes is was a long time but after doing it so many times it went fast I turned my head in increments 1/2 step at a time then divided it into the time so it was 30sec each turn 1 min at half way point then after awhile I got use to it but I don't want to have to do it again. lol

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@avmcbellar

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!

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@avmcbellar I found that there are neuro-ophthalmologists at OHSU, in Portland, through the Casey Eye Institute. I doubt that I'd find any better in Oregon. If an ophthalmologist here in central Oregon were to refer me, that's where they would send me. Then it comes to researching the individual doctors. I'm not in a big hurry at this point. I can function with the prison in my right lens.

Jim

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@jimhd

@avmcbellar I found that there are neuro-ophthalmologists at OHSU, in Portland, through the Casey Eye Institute. I doubt that I'd find any better in Oregon. If an ophthalmologist here in central Oregon were to refer me, that's where they would send me. Then it comes to researching the individual doctors. I'm not in a big hurry at this point. I can function with the prison in my right lens.

Jim

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Thank you @jimhd and @lioness for the advice. I am researchIng an otolaryngologist near me who specializes in dizziness and balance issues to get an assessment. I may need an adjustment, lol. I have tried a few times to find a neuro ophthalmologist but there are not many near me. I even had called the doctors’ offices but no one could help. My neuro surgeon told me to go see a particular neuro ophthalmologist at USF medical. He diagnosed me and then referred me to the neuro ophthalmologist I see regularly now. His patients are mostly pediatrics. Next year when I get my annual assessment I plan to ask more details about the surgery. I will ask for his recommendations of surgeons since to me he did not seem confident (we don’t mind traveling in our RV trailer for the surgery). I got that impression when he pushed for leaving the eye as is. He agreed with me that my motion sickness is brought on by the diplopia. Doing nothing at all to overcome my vision problems will be difficult because I would like to enjoy most of the things I do plus do more. There are risks involved, just like with any surgery, but it seems if the surgery is unsuccessful in eliminating the diplopia then a prism will help. Currently no prism offers any relief.

Liked by lioness

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@jimhd

@avmcbellar I found that there are neuro-ophthalmologists at OHSU, in Portland, through the Casey Eye Institute. I doubt that I'd find any better in Oregon. If an ophthalmologist here in central Oregon were to refer me, that's where they would send me. Then it comes to researching the individual doctors. I'm not in a big hurry at this point. I can function with the prison in my right lens.

Jim

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@jimhd thanks Jim for the recommendation. I will add them to my list contact list. Beautiful country in Oregon.

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@avmcbellar

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!

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@avmcbellar Tonight I went out on the deck to listen to the frogs and insects and to look at the stars. When my wife came out to join me she said that there were lots of stars. I replied that I could see twice as many.

Our place is enough higher than town that we can see the whole valley. The first thing I saw was a light a few miles away, with a second light above it. I feel like the prism has already stopped doing its job. I wonder if it gets worse when my eyes are tired, or I've been doing stuff on my phone.

We'll see what happens.

Jim

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