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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.

Mentor
John, Volunteer Mentor | @johnbishop | Jul 2, 2020
In reply to @pjfrahm "Please keep me updated on what you find out. I am actually scheduled for cataract surgery..." + (show)
@pjfrahm

Please keep me updated on what you find out. I am actually scheduled for cataract surgery next week and the other eye in a couple more weeks. I was initially informed at last year's eye appointment that I had started developing cataracts. Over this past year, my eyesight has gotten progressively worse with alot of sporadic blurriness, light sensitivity and just unable to focus with or without my prescription trifocals on well enough to read anything. I was diagnosed with peripheral neuropathy back around 2012 or so at Mayo and that too has been progressively getting worse. I take Gabapentin once a day in the evening because I can't focus enough to work if I take any during the day. The neuropathy, I believe started slowly after I had a spinal fusion in 2002. After my surgery, while still at home recuperating, I would get horrendous pains in my feet and would have to get up out of bed and walk around sometimes for up to an hour to wait on it to ease up enough to be able to get back to sleep. Within a few years, my feet hurt alot. I thought it was something else going on with my feet, not thinking it had to do with my fusion. By 2007, it got to the point that I could hardly walk around for very long or stand for very long without my feet hurting so bad. Then the strange combination of numbness, burning, ultra sensitivity started and has ever since just been getting worse and moving further up and around my feet. Now the tingling is in the lower part of each leg. My feet hurt CONSTANTLY!! My husband thinks I'm nuts because I sweep our floors pretty much every day, sometimes more than once. I can feel everything, tiny crumbs, grains of salt or sand, everything. They don't feel like tiny crumbs or grains of salt or sand, they feel like when someone with normal feet steps on a Lego. Not fun. Anyway, I'd love to hear about any relationship between neuropathy and the progressively worsening vision. Thank you! Good luck!

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@pjfrahm and @jimhd, I discussed my cataract eye vision problem with my primary care doc and asked if he can get me an appointment at Rochester Mayo where they first diagnosed the start of cataracts in 2015. He requested an appointment for me but they could only put me on a waiting list and told me they would get back with me in about 4 months. I was disappointed but will wait to see if they schedule an appointment after 4 months. I tried to see them in 2019 when my eyesight was getting worse and more sensitive to light and night driving and they would not even put me on a waiting list since they were booked out for over a year. It's really hard for me to believe. I really love Mayo but this kind of year to year scheduling problem is not very patient friendly.

My sister who is six years younger than I am just had cataract surgery in her right eye after having the surgery in her left eye last month. Happy to hear that both her cataract surgeries went well.

REPLY
2 replies
pjfrahm | @pjfrahm | Jul 2, 2020
In reply to @johnbishop "@pjfrahm and @jimhd, I discussed my cataract eye vision problem with my primary care doc and..." + (show)
@johnbishop

@pjfrahm and @jimhd, I discussed my cataract eye vision problem with my primary care doc and asked if he can get me an appointment at Rochester Mayo where they first diagnosed the start of cataracts in 2015. He requested an appointment for me but they could only put me on a waiting list and told me they would get back with me in about 4 months. I was disappointed but will wait to see if they schedule an appointment after 4 months. I tried to see them in 2019 when my eyesight was getting worse and more sensitive to light and night driving and they would not even put me on a waiting list since they were booked out for over a year. It's really hard for me to believe. I really love Mayo but this kind of year to year scheduling problem is not very patient friendly.

My sister who is six years younger than I am just had cataract surgery in her right eye after having the surgery in her left eye last month. Happy to hear that both her cataract surgeries went well.

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I should have also stated that the Gabapentin was prescribed for three issues for me, I have neck, shoulder and back issues as well as the neuropathy. If I don't take it at night, its a sleepless night for me with severe pain issues. I've had a L4-S1 fusion in 2002 for degenerative disc disease, a cervical decompression and laminectomy on my neck in 2017 for the same issue, which did not help. I also have adjacent segment disease around my fusion which I had a decompression and laminectomy the same time as the neck surgery in 2017. The low back decompression and laminectomy helped somewhat, but still quite a bit of pain depending on the activity. I have arthritis in neck, spine and shoulders. I had a bone spur, SLAP tear and arthritis in my shoulder which I had surgery on and am still doing home PT. The other shoulder has been having some of the same pain issues and that has been getting progressively worse although I have hesitated in going in because of COVID. All of those issues on top of the neuropathy make for a fun night. I am always optimistic that things will miraculously go away and get better. What else can I do? I still think my neuropathy is nerve damage from my low back spinal fusion, but any doctor I bring that up to basically ignores that suggestion and changes the subject. I never had feet issues until my fusion in 2002.

REPLY
pjfrahm | @pjfrahm | Jul 2, 2020
In reply to @jimhd "@pjfrahm I'm really sorry for your pain. At this point, you could be describing how my..." + (show)
@jimhd

@pjfrahm

I'm really sorry for your pain. At this point, you could be describing how my feet hurt, though it hasn't been this bad as long as yours.

Gabapentin was no help for me. But then, nothing else has, either.

When I talk with my various specialists - eyes, swallowing, ED, bladder, muscle tone, balance - I ask them if the problem is related to neuropathy. The answer is always "maybe. Could be." Even the head of neurology at a very good teaching hospital said those helpful words.

I had cataract surgery on both eyes a year ago, and my double vision has become progressively worse since then. I brought it up several years ago, but at my last visit he believed me and had prisms ground in the right lens of my glasses, which helped for awhile. Esophageal dysmotility could also have neuropathic involvement, as well as tinnitus, my vision getting blurry until I get them to refocus.

There are different kinds of neuropathy, of course, which really confuses diagnosis and treatment. Has a doctor talked with you about autonomic neuropathy?

I've tried a few medications that reduced the pain, but they either had unacceptable side effects, or they quit working. Sorry. Not very encouraging.

PN seems to be uncharted territory to a great extent. Treatment seems to be a hit and miss process.

I don't know how to send you to a discussion thread about the neuropathy journey stories, but I'll tag @johnbishop to help me out. I surely hope that you can find a treatment that will give you some relief from the constant pain.

Jim

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THANK YOU!!!

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1 reply
pjfrahm | @pjfrahm | Jul 2, 2020
In reply to @johnbishop "@pjfrahm and @jimhd, I discussed my cataract eye vision problem with my primary care doc and..." + (show)
@johnbishop

@pjfrahm and @jimhd, I discussed my cataract eye vision problem with my primary care doc and asked if he can get me an appointment at Rochester Mayo where they first diagnosed the start of cataracts in 2015. He requested an appointment for me but they could only put me on a waiting list and told me they would get back with me in about 4 months. I was disappointed but will wait to see if they schedule an appointment after 4 months. I tried to see them in 2019 when my eyesight was getting worse and more sensitive to light and night driving and they would not even put me on a waiting list since they were booked out for over a year. It's really hard for me to believe. I really love Mayo but this kind of year to year scheduling problem is not very patient friendly.

My sister who is six years younger than I am just had cataract surgery in her right eye after having the surgery in her left eye last month. Happy to hear that both her cataract surgeries went well.

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I would go elsewhere for your cataracts if Mayo can't help sooner. I am going to Minnesota Eye Consultants after my eye doctor in my area referred me. I've had scheduling issues at Mayo as well, which is very discouraging. Plus, I hate the drive back and forth for days long appointments. Seems like the last half dozen drives back and forth I've run into serious weather issues. After driving through straightline winds and torrential rains the last time, I have opted out. It sure doesn't help neck issues when you are white knuckling your extremely stressful 2 hour drive.

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Mentor
Jim, Volunteer Mentor | @jimhd | Jul 3, 2020
In reply to @pjfrahm "THANK YOU!!!" + (show)
@pjfrahm

THANK YOU!!!

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@pjfrahm I mostly use my phone for emailing and shopping, and I don't know how to share links. I mentioned a discussion, and see it in the neuropathy group. The discussion is Member Neuropathy Journey Stories: What's Yours?

Having multiple issues sure can make it a challenge to treat them all without drug interactions. Last week I met with a neurospecialist to discuss the possibility of a DRG stimulator implant, but before we got to that, she showed me the MRI I had done several months ago. I was supposed to have spoken with her about it long ago, but Covid19 delayed everything. She showed me the spinal stenosis which is impinging the cluster of nerves in my spinal column, and quite possibly causing some of the pain in my feet. I'd love to have the surgery done ASAP, but I can't be recovering from surgery when I have so much to do all summer. I can't just tell the garden and landscaping to understand why they won't be getting watered. I am hopeful that the work on my back will reduce my pain. It sounds like you need a great doctor like this neurospecialist. She doesn't limit her perspective to only the small field of neuropathy, or only to treating the symptoms.

So, I'm enduring the pain until the end of September. It helps to have a goal like that.

Gotta get to sleep.

Jim

REPLY
2 replies
lioness | @lioness | Jul 3, 2020
In reply to @avmcbellar "Hi Hank, I understand sometimes we have to make sacrifices for our health. I always look..." + (show)
@avmcbellar

Hi Hank, I understand sometimes we have to make sacrifices for our health. I always look for alternate ways. If I have a choice I prefer not using any animal sources, especially seals. I cannot justify taking a supplement purely on chance I.e. without any medical evidence. I do believe there is a difference between the two. It is the seals that are the mammals. Their quantity is greatly outnumbered by salmon or fish which is farmed. Besides the fish oil, I eat walnuts and flax seeds. A vegetarian diet can be a very healthy diet. Fantastic! I believe it can help in many health issues.

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@avmcbellar I'm going to jump in here you mentioned farm raised salmon that is the worst kind you can eat . To many chemicals in the water and they don't have fresh water changes or running water in those flutes . Not sure that is the name but they remind me of the coal coming on the convaerbelt . No farm raised salmon at all never buy them .

REPLY
1 reply
Hank | @jesfactsmon | Jul 3, 2020
In reply to @jimhd "@pjfrahm I mostly use my phone for emailing and shopping, and I don't know how to..." + (show)
@jimhd

@pjfrahm I mostly use my phone for emailing and shopping, and I don't know how to share links. I mentioned a discussion, and see it in the neuropathy group. The discussion is Member Neuropathy Journey Stories: What's Yours?

Having multiple issues sure can make it a challenge to treat them all without drug interactions. Last week I met with a neurospecialist to discuss the possibility of a DRG stimulator implant, but before we got to that, she showed me the MRI I had done several months ago. I was supposed to have spoken with her about it long ago, but Covid19 delayed everything. She showed me the spinal stenosis which is impinging the cluster of nerves in my spinal column, and quite possibly causing some of the pain in my feet. I'd love to have the surgery done ASAP, but I can't be recovering from surgery when I have so much to do all summer. I can't just tell the garden and landscaping to understand why they won't be getting watered. I am hopeful that the work on my back will reduce my pain. It sounds like you need a great doctor like this neurospecialist. She doesn't limit her perspective to only the small field of neuropathy, or only to treating the symptoms.

So, I'm enduring the pain until the end of September. It helps to have a goal like that.

Gotta get to sleep.

Jim

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@jimhd Hi Jim, just as an FYI, there are youtube videos about how to share links in case you'd like to learn. I saw one that is just under 2 minutes long which is a pretty good nutshell version. Here it is:

Its called "how to send a link in an email" but it works just as well in other venues like on Connect, etc. There are a bunch of other videos about the same subject, some longer (one was over 9 minutes -egad!). Best to you, Hank

REPLY
1 reply
avmcbellar | @avmcbellar | Jul 3, 2020
In reply to @lioness "@avmcbellar I'm going to jump in here you mentioned farm raised salmon that is the worst..." + (show)
@lioness

@avmcbellar I'm going to jump in here you mentioned farm raised salmon that is the worst kind you can eat . To many chemicals in the water and they don't have fresh water changes or running water in those flutes . Not sure that is the name but they remind me of the coal coming on the convaerbelt . No farm raised salmon at all never buy them .

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Hi @lioness I agree. Salmon farm raised is not the best because it also contains hormones used in their feed. But we do our best in making our selection. Natural waters are not as clean as they once were either. We have to make a choice between salmon in natural waters which commonly contains pollutants or farm raised.

REPLY
1 reply
lioness | @lioness | Jul 3, 2020
In reply to @avmcbellar "Hi @lioness I agree. Salmon farm raised is not the best because it also contains hormones..." + (show)
@avmcbellar

Hi @lioness I agree. Salmon farm raised is not the best because it also contains hormones used in their feed. But we do our best in making our selection. Natural waters are not as clean as they once were either. We have to make a choice between salmon in natural waters which commonly contains pollutants or farm raised.

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@avmcbellar I know the waters are poluted Racheal Carson has a book out The Silent Spring Published back in the 69,s I believe talks about the pollution from man they put in the waters The best Salmon we had a friend fished up in Alaska and gave us some but that's so expensive so I get my Omega 3-6 from good capsules or the Hemp oil

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1 reply
Mentor
Jim, Volunteer Mentor | @jimhd | Jul 4, 2020
In reply to @jesfactsmon "@jimhd Hi Jim, just as an FYI, there are youtube videos about how to share links..." + (show)
@jesfactsmon

@jimhd Hi Jim, just as an FYI, there are youtube videos about how to share links in case you'd like to learn. I saw one that is just under 2 minutes long which is a pretty good nutshell version. Here it is:

Its called "how to send a link in an email" but it works just as well in other venues like on Connect, etc. There are a bunch of other videos about the same subject, some longer (one was over 9 minutes -egad!). Best to you, Hank

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@jesfactsmon

Thanks, Hank. I know how to copy a link on my laptop. The problem is that I usually do email on my phone, and there's no cut and copy that I know of. I could get up from my recliner and walk down the hall to my study, where my new laptop lives, and do the link sharing. Sometimes I have the laptop in the family room, but I don't really like typing on it in my lap. I replaced my old one that was slowing down, with a new one with a touch screen, with my "help out the local economy check" from the government. (Sorry. I seem to have a mental block on what those checks are called, and I don't want to ask my wife because that just adds fuel to her fire, known as "you take too many medications. They slow down your thinking." I get tired of hearing that, so I avoid reinforcing her complaint.) The word will come to me after I turn my lamp off and work on going to sleep. If there's a way to share a link on my phone, I should figure it out. Maybe tomorrow I'll Google it.

Jim

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