Eyes and Neuropathy

Posted by rwinney @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.

you’re welcome!😁

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@jesfactsmon

Hi Rachel, thanks for thinking of us in regards to this. It seems clear that this non-invasive approach is a much better way to identify SFN that the skin biopsy method. Which would make it something to try and have done if the equipment were available, which you're saying is not the case everywhere. I will talk to Linda about this tomorrow. No, she has not had a skin punch biopsy. She has never seen a neurologist either and has never been clinically diagnosed with PN.

You know, my first thought about diagnosing SFN has always been what is the advantage to knowing that? She got slammed with PN two days after her second chemo infusion and we just kind of relied on internet research to find out about it from there. All of her doctors were saying "Oh that will go away after the chemo is over". We were both skeptical of that statement. And what I found online was that many people did say it might gradually diminish over time but barring that happening there were not really any treatments for chronic PN. In the NCBI article they mention that CCM would help "anticipate deterioration, and assess new therapies". Linda has already been deteriorating gradually over the past six years and is likely to continue it seems. And it also seems like the way SFN is mostly treated is with pain medications which Linda mostly can not tolerate. The most hopeful thing to come along lately seems to be these pain reducing nerve stimulator techniques people are trying.

On the other hand, knowing that this technique is non invasive as well as more accurate than other methods definitely weighs in its favor. There would be value in having it done just to have the knowledge gained by it, so if this were available to us I think I would encourage Linda to have it done. It's certainly an interesting approach to diagnosis. Thanks for this info and the links to the articles Rachel. One final thing: did you happen to locate any of these CCM microscopes? Best, Hank

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@jesfactsmon I believe there's one in Portland Oregon

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Hi Rachel @rwinney. I have noticed my new glasses have made a significant difference in decreasing my photophobia. With the prescription eyes glasses, each eye sees the same magnification thereby decreasing the strain. I still have the double vision. With a lower sensitivity to light, I am able to open both eyes more. I use the lubricating eye drops. I am wondering what you can do to decrease your eye strain. Ask your ophthalmologist if your photophobia is related to eye strain. I still have some eye strain due to the diplopia but apparently I reduced just enough to cause the photophobia to decrease. I hope you get some relief. My mother has macular degeneration and complains of photophobia. Unfortunately all she can do is wear sunglasses outdoors for help.

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@avmcbellar

Hi Rachel @rwinney. I have noticed my new glasses have made a significant difference in decreasing my photophobia. With the prescription eyes glasses, each eye sees the same magnification thereby decreasing the strain. I still have the double vision. With a lower sensitivity to light, I am able to open both eyes more. I use the lubricating eye drops. I am wondering what you can do to decrease your eye strain. Ask your ophthalmologist if your photophobia is related to eye strain. I still have some eye strain due to the diplopia but apparently I reduced just enough to cause the photophobia to decrease. I hope you get some relief. My mother has macular degeneration and complains of photophobia. Unfortunately all she can do is wear sunglasses outdoors for help.

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Hi @avmcbellar. Great to hear! I'm happy you've notice some relief with photophobia and strain. I'm with your Mom in always needing sunglasses… and my baseball hat. Cutting down light from above helps me alot. I will see what my 2nd opinion neuro opthamologist has to offer. Take care.

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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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@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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@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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@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

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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 🙂

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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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