Eyes and Neuropathy

Posted by rwinney @rwinney, 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.

@johnbishop

@jesfactmon, I've taken the Omega-3 supplements as part of my protocol of supplements for the last 4 years. The original one we used was Nordic Naturals fish oil in liquid form but they now have capsules. Our new 525 protocol contains the equivalent EPA/DHA content. We also take 1-1/2 oz of Manitoba Harvest Hemp Seed Oil as the plant based Omega-3 as part of the original and the new 525 protocol.

Here's the link to the Nordic Naturals Omega-3 product on Amazon – https://www.amazon.com/gp/product/B002CQU550/

More info on my supplements are in the discussion – Have you tried the new Protocol 525 product for neuropathy relief?: https://connect.mayoclinic.org/discussion/have-you-tried-the-new-protocol-525-product-for-neuropathy-relief/

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Hi John, thank-you, yes I am familiar with the Protocol 525, but what I am wondering about is whether anyone takes DPA specifically and if they have noticed any benefit to their SFPN from taking it. More specifically I am curious about AUUM's products because of the Canadian trial results I mentioned in the previous post. One of them NeuroPerformance, contains 45 mg DPA (Docosapentaenoic acid) according to their description. Hank

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@jesfactsmon

Hi John, thank-you, yes I am familiar with the Protocol 525, but what I am wondering about is whether anyone takes DPA specifically and if they have noticed any benefit to their SFPN from taking it. More specifically I am curious about AUUM's products because of the Canadian trial results I mentioned in the previous post. One of them NeuroPerformance, contains 45 mg DPA (Docosapentaenoic acid) according to their description. Hank

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I'm not familar with AUUM's products but I know that the Nordic Naturals Omega-3 capsules contain 450 mg DHA (Docosohexoenoic Acid). The liquid fish oil version of the Nordic Naturals was chosen because it had one of the best consumer products ratings when it was chosen for the protocol. I think (just an opinion 🙂 ) Omega-3's are only one piece of the puzzle and taking it alone may or may not help.

Here's some interesting info that may provide more insight on Omega-3's — Why the Omega-3/Omega-6 Ratio May Not Matter After All: https://www.marksdailyapple.com/why-the-omega-3omega-6-ratio-may-not-matter-after-all/

Another topic you might find interesting for research — Hey, I'm just a 77 year old kid and I like reading stuff I can understand 🙂

Mitochondria – Turning on the Powerhouse: http://www.biology4kids.com/files/cell_mito.html

Another really good YouTube video on Mitochondria — TED Talk by Dr. Terry Wahls
Minding Your Mitochondria: https://www.youtube.com/watch?v=eVW3U08aMRY

Liked by rwinney, HankB

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@johnbishop

I'm not familar with AUUM's products but I know that the Nordic Naturals Omega-3 capsules contain 450 mg DHA (Docosohexoenoic Acid). The liquid fish oil version of the Nordic Naturals was chosen because it had one of the best consumer products ratings when it was chosen for the protocol. I think (just an opinion 🙂 ) Omega-3's are only one piece of the puzzle and taking it alone may or may not help.

Here's some interesting info that may provide more insight on Omega-3's — Why the Omega-3/Omega-6 Ratio May Not Matter After All: https://www.marksdailyapple.com/why-the-omega-3omega-6-ratio-may-not-matter-after-all/

Another topic you might find interesting for research — Hey, I'm just a 77 year old kid and I like reading stuff I can understand 🙂

Mitochondria – Turning on the Powerhouse: http://www.biology4kids.com/files/cell_mito.html

Another really good YouTube video on Mitochondria — TED Talk by Dr. Terry Wahls
Minding Your Mitochondria: https://www.youtube.com/watch?v=eVW3U08aMRY

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Thanks John, you're better than the Library of Congress for information. So quick too!

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@jesfactsmon

Thanks John, you're better than the Library of Congress for information. So quick too!

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Now that gave me a good chuckle Hank @jesfactsmon 🙂

Liked by rwinney

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@jesfactsmon

Hi, has anyone had any experience with taking omega3 supplements that contain DPA? Specifically any that comes from the AUUM company?

I happened upon some information this morning about Omega 3's in relation to SFPN. Someone on another blog mentioned this Canadian company called AUUM who makes omega3 products that apparently aid small fiber nerve growth (quantified by measuring corneal nerve fiber length (CNFL)). AUUM's website auum.ca says that one Canadian trial found that "patients on average experienced a 29% increase in corneal nerve fibre length when supplementing AUUM oil, which is considered to be representative of small nerve fibre regeneration in other parts of the body." The difference in their omega3 oil is apparently that it comes from mammals (seal oil) as opposed to fish and therefore contains more DPA (most omega3 supplements only contain EPA and DHA to any significant amount). DPA is said to be very important to nerves and most people do not get enough. This is what I have gleaned in a couple of hours of searching info on the web, but I have just scratched the surface. Looking for anyone who has knowledge or experience regarding this subject, especially if anyone has tried any AUUM's products. Thanks.

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Hi Hank @jesfactsmon, I too have been taking a fish oil omega3 supplement. I believe all the fish oil supplements contain DPA, docosepantaenoic acid. The amount is much lower than EPA and DHA. There are other seafood sources but specifically salmon has the higher amount. How much DPA is needed? And how much more DPA is there available from salmon? Sorry, but I will not try a supplement derived from seals.

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@avmcbellar

Hi Hank @jesfactsmon, I too have been taking a fish oil omega3 supplement. I believe all the fish oil supplements contain DPA, docosepantaenoic acid. The amount is much lower than EPA and DHA. There are other seafood sources but specifically salmon has the higher amount. How much DPA is needed? And how much more DPA is there available from salmon? Sorry, but I will not try a supplement derived from seals.

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Hi @avmcbellar, my interest was piqued by the trial results made by the company as to the corneal small fiber nerve growth measured by the taking of their omega 3 oil, that's all. I've been vegetarian (no meat, fish, poultry) since 1976 but I do allow exceptions for health if
necessary, but I don't see the ethical difference between fish oil and seal oil?

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@jesfactsmon

Hi @avmcbellar, my interest was piqued by the trial results made by the company as to the corneal small fiber nerve growth measured by the taking of their omega 3 oil, that's all. I've been vegetarian (no meat, fish, poultry) since 1976 but I do allow exceptions for health if
necessary, but I don't see the ethical difference between fish oil and seal oil?

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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.

Liked by HankB

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@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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Yes, I get your take on it. Thanks, Hank

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@johnbishop

Hi Rachel @rwinney, Great timing on this new discussion. I have an appointment with my primary care doctor and I was going to ask him for a referral to Mayo Clinic Rochester for an eye exam. I had the start of cataracts when my eyes were checked in 2017 at Mayo and I tried to get another appointment in 2019 but they were booked out for the year so I had one done at local eye glasses place. They told me the cataracts would be about a 2 out of 4 level if 4 was the worst. I got new glasses then but the past 6 months or so my eyes seem to be getting worse. It's harder driving at night or when it's sunny and my eyes don't focus well when reading or using the computer even with my computer glasses which I had made specifically for wearing when using the computer.

I don't have any eye pain but there are times when the eyes are tearing up when strained.

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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

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

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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@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.

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@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.

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@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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@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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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

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