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.

@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

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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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@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!

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Touche!

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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

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@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

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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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@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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Hank, I did three exercises and one was the Epley Manuever.

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@avmcbellar

@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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@avmcbellar I do have a pair of night vision glasses that I wear over my glasses. They help some.

Jim

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@avmcbellar

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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I had experienced the vertigo also for about a year and after 2 unsuccessful visits to ENT’s was lucky enough to find a P/T who specialized in this disorder. Since there are 3 ear canals it is most important to know which one to work on and the movements depend on that otherwise the crystals can continue to move from one canal to another without alleviating the problem. My gal was a whiz and I have not experienced that awful vertigo since, although I do sometimes have some short lived dizziness but it is nothing in comparison.

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@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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@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

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@lois6524 So true about the ears and those ear exercises . I had the similar thing and the ENT sent me to the Vestibular Dr. After putting me through a lot of different test the Dr. said it was the crystals that where out of place and for a month I had to do these exercises 2 x a day and haven't had any since that bad . One time I felt dizzy and did the exercises and that was all so far I haven't had anymore .

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@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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