1. < Eye Conditions
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
Rachel, Volunteer Mentor | @rwinney | Aug 26, 2020
In reply to @colleenyoung "When considering complementary or alternative treatments, be open-minded yet skeptical. Keep in mind that supplements are..." + (show)
@colleenyoung

When considering complementary or alternative treatments, be open-minded yet skeptical. Keep in mind that supplements are not regulated, and learn about the potential benefits and risks. Here is an article from Mayo Clinic that might interest you about evaluating claims made by the producers and/or sellers of supplements, natural products and other alternative medicines. http://mayocl.in/2tGC0Jp

Quercetin is getting a lot of attention these days for its potential benefit. When evaluating the information be sure to note whether the evidence is based on test tube and animal trials or whether there have been human trials. Many drugs show promise in early trial phases but do not prove effective in later human trials. In the case of quercetin, more human research is needed. See this article and related research:
- What Is Quercetin? Benefits, Foods, Dosage, and Side Effects https://www.healthline.com/nutrition/quercetin

You might also be interested to know that Mayo Clinic is researching a drug called a senolytic – dasatinib plus quercetin - that has just moved into early human research.
“We are studying the effectiveness of this and other senolytic drugs, but that does not mean that these should be used by patients or prescribed by physicians for any off-label conditions,” says Dr. Kirkland. “I want to emphasize that no one should take these drugs. This research is only beginning.”
- Senescent cell research moves into human trials https://newsnetwork.mayoclinic.org/discussion/senescent-cell-research-moves-into-human-trials-2/

As always, please consult with your medical provider before taking supplements.

Jump to this post

@colleenyoung Thanks Colleen, I agree. Research, research, research. Thank you for the tips.

REPLY
1 reply
Hank | @jesfactsmon | Aug 27, 2020
In reply to @colleenyoung "When considering complementary or alternative treatments, be open-minded yet skeptical. Keep in mind that supplements are..." + (show)
@colleenyoung

When considering complementary or alternative treatments, be open-minded yet skeptical. Keep in mind that supplements are not regulated, and learn about the potential benefits and risks. Here is an article from Mayo Clinic that might interest you about evaluating claims made by the producers and/or sellers of supplements, natural products and other alternative medicines. http://mayocl.in/2tGC0Jp

Quercetin is getting a lot of attention these days for its potential benefit. When evaluating the information be sure to note whether the evidence is based on test tube and animal trials or whether there have been human trials. Many drugs show promise in early trial phases but do not prove effective in later human trials. In the case of quercetin, more human research is needed. See this article and related research:
- What Is Quercetin? Benefits, Foods, Dosage, and Side Effects https://www.healthline.com/nutrition/quercetin

You might also be interested to know that Mayo Clinic is researching a drug called a senolytic – dasatinib plus quercetin - that has just moved into early human research.
“We are studying the effectiveness of this and other senolytic drugs, but that does not mean that these should be used by patients or prescribed by physicians for any off-label conditions,” says Dr. Kirkland. “I want to emphasize that no one should take these drugs. This research is only beginning.”
- Senescent cell research moves into human trials https://newsnetwork.mayoclinic.org/discussion/senescent-cell-research-moves-into-human-trials-2/

As always, please consult with your medical provider before taking supplements.

Jump to this post

Thanks Colleen. Yesterday I was reading about some company that was just starting out on a new line of research regarding helping neuropathic pain, and the article was very positive and excited about the promise of what was coming. One of the comments by a reader underneath this article said something like "When I see something like this coming out, all I do is search for 2 words: 'mouse trials'. Then I know to come back in ten years for an update". Made me giggle. Best, Hank

REPLY
sunnyflower | @sunnyflower | Aug 29, 2020
In reply to @jesfactsmon "@onamission Thank-you for the interesting info about quercetin. My wife Linda has eye issues and might..." + (show)
@jesfactsmon

@onamission
Thank-you for the interesting info about quercetin. My wife Linda has eye issues and might benefit. One of the things discussed in the initial article you provided is quercetin's ability to deactivate the ROS which mitochondria produce as a waste byproduct of ATP creation. Linda takes a supplement called MitoQ which is a more absorbable form of Co-Q10 and the main thing it is purported to do is to clean up the ROS. But I am not sure whether MitoQ is as effective as quercetin at dealing specifically with ROS in the eyes, something I plan to try to find out. If not, then quercetin may be the next supplement we'll be adding to her regimen.

Again, thank-you for being of service with all of this very useful information, including the info about magnesium and boron, it is all appreciated! Hank

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Hank, you just took me right back to microbiology! Oh how I loved learning about glycolosis and the Krebs cycle. ATP, talk to me LOL! I LOVE that stuff! It increases my faith and validates the bible and science are allies! Thx for the memories! 🤗

REPLY
1 reply
sunnyflower | @sunnyflower | Aug 29, 2020
In reply to @artscaping "@sunnyflower, I just caught your post about vision problems from neuropathy. I know about dry eye..." + (show)
@artscaping

@sunnyflower, I just caught your post about vision problems from neuropathy. I know about dry eye syndrome and my ophthalmologist described how the partially dead nerves on my eyes lead to more cells dying from lack of moisture. There are machines that massage your glands, ointments, and fluid drops that keep the eye moist. You can try all of those remedies or just move to a rain forest. That is actually what my clinician told me.

He also told me that fires in your area invite particulates to fall into your eye. Tired of the fires, the evacuations, the anxiety while waiting to go back up the mountain to see what is left, I chose to move to MN. Much higher humidity and I have noticed the lack of eye irritation.

Guess what.....today the air around the river was filled with particulates from the CA fires. I wanted to scream "don't come here......... I moved here to get away from the particles."

Be safe, free, and protected from inner and outer harm.
Chris

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Love the humor Chris! We have to keep that for certain!! Thank you 🤣

REPLY
Hank | @jesfactsmon | Aug 30, 2020
In reply to @sunnyflower "Hank, you just took me right back to microbiology! Oh how I loved learning about glycolosis..." + (show)
@sunnyflower

Hank, you just took me right back to microbiology! Oh how I loved learning about glycolosis and the Krebs cycle. ATP, talk to me LOL! I LOVE that stuff! It increases my faith and validates the bible and science are allies! Thx for the memories! 🤗

Jump to this post

@sunnyflower When reading up on mitochondria last year, 8th grade biology and the memory of the term "Krebs cycle" came back to me. It was strange to be revisiting that information after a 50 year hiatus from that area of science. I am always amazed at the endless complexities of science in general as it always reveals the deep and awe inspiring wonder that is God's creation. Best, Hank

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sunnyflower | @sunnyflower | Aug 31, 2020

Absopositivlutely! 👍

REPLY
Hank | @jesfactsmon | Sep 1, 2020
In reply to @rwinney "@colleenyoung Thanks Colleen, I agree. Research, research, research. Thank you for the tips." + (show)
@rwinney

@colleenyoung Thanks Colleen, I agree. Research, research, research. Thank you for the tips.

Jump to this post

@rwinney Hi Rachel, yet one more PM for you. Hank

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harley22 | @harley22 | Sep 1, 2020

I have CIDP and have no luck from any of the neurologists I’ve been to.
I’ve had so many tests,and the nerve biopsy showed there was demyelinization of the nerves, but no reason as to why.
I am slowly getting worse, and my eyes especially.
Besides having dry eyes, the effect of sunlight is painful.
My pupils don’t react to light at all which is the reason they are so light sensitive.
My past eye docs test them in the office and tell me I’m good,when I know I’m not.
I do have an appt in 2 weeks with a new opthomologist, but I was so surprised to read your symptoms and mine are similar.
I never wore glasses until few years ago, and just for reading.
I attributed it to age, but now I realize how bad my eyes are.

REPLY
2 replies
Mentor
Rachel, Volunteer Mentor | @rwinney | Sep 1, 2020
In reply to @harley22 "I have CIDP and have no luck from any of the neurologists I’ve been to. I’ve..." + (show)
@harley22

I have CIDP and have no luck from any of the neurologists I’ve been to.
I’ve had so many tests,and the nerve biopsy showed there was demyelinization of the nerves, but no reason as to why.
I am slowly getting worse, and my eyes especially.
Besides having dry eyes, the effect of sunlight is painful.
My pupils don’t react to light at all which is the reason they are so light sensitive.
My past eye docs test them in the office and tell me I’m good,when I know I’m not.
I do have an appt in 2 weeks with a new opthomologist, but I was so surprised to read your symptoms and mine are similar.
I never wore glasses until few years ago, and just for reading.
I attributed it to age, but now I realize how bad my eyes are.

Jump to this post

Hello @harley22. Welcome to the conversation. I believe you are responding to me @rwinney? I have read some of your posts and do have heartfelt sympathy for your CIDP condition. How have IVig treatments worked out for you? I'd like to know. What a miserable time of things from body to eyes. It gets confusing to differentiate between causes of age or diagnosis. I never understood, nor did my opthemologist or neuro-opthemologist, why my eyes were so light sensitive. It had been blamed on scar tissue from my surgeries for 7 years. I began cross researching and understanding, since my Small Fiber Polyneuropathy diagnosis, that nerve damage, is nerve damage, and in my case and probably yours, it affects many parts of our bodies. including our eyes. There does not seem to be a way out other than what we adjust in our daily lives to compensate. For my photophobia I wear baseball hats, different shades of sunglasses according to light situations, car visor down, lights and lamps dimmed or altered, etc...Dry eye....well, drops, warm wash clothes, avoid fans, wind, air conditioners.....blah, blah, blah! What can we do, right? It stinks but, we must prevail and keep fighting as best we know how. I wish you peace and comfort.
Rachel

REPLY
sunnyflower | @sunnyflower | Sep 1, 2020
In reply to @harley22 "I have CIDP and have no luck from any of the neurologists I’ve been to. I’ve..." + (show)
@harley22

I have CIDP and have no luck from any of the neurologists I’ve been to.
I’ve had so many tests,and the nerve biopsy showed there was demyelinization of the nerves, but no reason as to why.
I am slowly getting worse, and my eyes especially.
Besides having dry eyes, the effect of sunlight is painful.
My pupils don’t react to light at all which is the reason they are so light sensitive.
My past eye docs test them in the office and tell me I’m good,when I know I’m not.
I do have an appt in 2 weeks with a new opthomologist, but I was so surprised to read your symptoms and mine are similar.
I never wore glasses until few years ago, and just for reading.
I attributed it to age, but now I realize how bad my eyes are.

Jump to this post

Hello, I am probably the last to know this but just did a search to see if there is a neuro-ophthalmology specialty and there is! Sounds like that would be who you, myself and those of us with these symptoms should see. All the best, Sunny

REPLY
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