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.

@jesfactsmon Hi Hank I haven’t forgotten. Thanks for thinking of me. Nice to hear from you. I believe in using a product a person supports. How well will that supplement work for a person knowing he or she does not agree with an ingredient(s)? I think there is a mental effect too. I use Dr Tobias Omega 3 fish oil triple strength 2000mg through Amazon. Thank you @tcokeefe for the Ovega vegan recommendation. I will look at that product. I was not aware of Ovega. I see it is also offered through Amazon.
Hank, I have been experimenting with the ALA(alpha lipoic acid) lately to curb my burning sensation. I have concluded it is not food related but solely the ALA. I remembered what you had told me about the dosage so I purchased 300mg capsules. I took the supplement twice a day with food then 2 capsules once a day. The problem was(as before) I would wake up with the burning in the mornings. It slowly intensified and lasted the whole day. It made me feel miserable. No matter what I ate it would not go away. When I stopped the late afternoon dosage the burning subsided in the mornings. I figured out to raise my head higher when sleeping. It made all the difference. I now take a 300 mg capsule in the mornings without the burning. I finally figured it out. Thank you for your input. My next challenge will be the diplopia causing the motion sickness. Due to insurance coverage, I have to wait 15 months. In the meantime I am practicing neuroplasticity as my fellow Australian is doing. Wish you and Linda well, good day!

REPLY
@avmcbellar

@jesfactsmon Hi Hank I haven’t forgotten. Thanks for thinking of me. Nice to hear from you. I believe in using a product a person supports. How well will that supplement work for a person knowing he or she does not agree with an ingredient(s)? I think there is a mental effect too. I use Dr Tobias Omega 3 fish oil triple strength 2000mg through Amazon. Thank you @tcokeefe for the Ovega vegan recommendation. I will look at that product. I was not aware of Ovega. I see it is also offered through Amazon.
Hank, I have been experimenting with the ALA(alpha lipoic acid) lately to curb my burning sensation. I have concluded it is not food related but solely the ALA. I remembered what you had told me about the dosage so I purchased 300mg capsules. I took the supplement twice a day with food then 2 capsules once a day. The problem was(as before) I would wake up with the burning in the mornings. It slowly intensified and lasted the whole day. It made me feel miserable. No matter what I ate it would not go away. When I stopped the late afternoon dosage the burning subsided in the mornings. I figured out to raise my head higher when sleeping. It made all the difference. I now take a 300 mg capsule in the mornings without the burning. I finally figured it out. Thank you for your input. My next challenge will be the diplopia causing the motion sickness. Due to insurance coverage, I have to wait 15 months. In the meantime I am practicing neuroplasticity as my fellow Australian is doing. Wish you and Linda well, good day!

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@avmcbellar
I didn't know you were Australian (how would I?). Always interesting to hear something new about someone here. I got "The Brain that Changes Itself" that Barry recommended. I am going to start reading it soon I hope.

I am glad you are at the end of your ALA journey. And are you still taking ALC? I truly believe in that supplement. It's one of the fe supplements I ever took where I could notice the boost in energy it gave me. Best, Hank

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Hi Hank, I am originally from Australia. I returned later to Australia and finished school at Preston College of TAFE(tertiary and further education). Throughout the years I learned not to say much because people had no clue about Australia. They could not even tell me the location of the country. I remember one adult telling me it was near Greenland. I gave up. I still have connections there. In fact my daughter recently went to visit family and see where I had lived. Family comes here(Florida) to visit us as well. It is nice to see our kids stay connected although we are miles apart. Thanks to technology it has made it possible.
I started researching neuroplasticity earlier in the year to help me with my diplopia. I began my own daily eye exercises. After a few weeks I noticed an improvement. The problem is that the vision of the bad eye shifts to try to align with the other eye. I have to deal with the worsening motion sickness for now but I am hoping my eyes stabilized at some point. I plan to continue with the eye exercises for a year before visiting my neuro ophthalmologist for the strabismus surgery. I am researching the risks of the surgery and the reviews of my surgeon and so far it looks good. Maybe in a year the technology will become even better.
I began the ALC 1200mg about 2 weeks ago. I take it with food in the mornings with no problem. I haven’t tried the ALA 30 minutes prior on an empty stomach. Hmmmm, maybe the ALC will help more with the ALA if I take it 30 minutes after. Good, something else to learn by trial and error. I remember studying mitochondria in high school and college. I never learned the details, never had to. It is amazing how medical knowledge has changed in the last 20 years.....somethings that were taught to patients are no longer true. That is why I believe to research and be your own advocate. Trial and error works for me. Neuroplasticity is fascinating. I wish you and Barry the best. Good luck with the reading of your new book. I am glad to hear you are no longer interested in the product containing seals......good on ya!

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@avmcbellar

Hi Hank, I am originally from Australia. I returned later to Australia and finished school at Preston College of TAFE(tertiary and further education). Throughout the years I learned not to say much because people had no clue about Australia. They could not even tell me the location of the country. I remember one adult telling me it was near Greenland. I gave up. I still have connections there. In fact my daughter recently went to visit family and see where I had lived. Family comes here(Florida) to visit us as well. It is nice to see our kids stay connected although we are miles apart. Thanks to technology it has made it possible.
I started researching neuroplasticity earlier in the year to help me with my diplopia. I began my own daily eye exercises. After a few weeks I noticed an improvement. The problem is that the vision of the bad eye shifts to try to align with the other eye. I have to deal with the worsening motion sickness for now but I am hoping my eyes stabilized at some point. I plan to continue with the eye exercises for a year before visiting my neuro ophthalmologist for the strabismus surgery. I am researching the risks of the surgery and the reviews of my surgeon and so far it looks good. Maybe in a year the technology will become even better.
I began the ALC 1200mg about 2 weeks ago. I take it with food in the mornings with no problem. I haven’t tried the ALA 30 minutes prior on an empty stomach. Hmmmm, maybe the ALC will help more with the ALA if I take it 30 minutes after. Good, something else to learn by trial and error. I remember studying mitochondria in high school and college. I never learned the details, never had to. It is amazing how medical knowledge has changed in the last 20 years.....somethings that were taught to patients are no longer true. That is why I believe to research and be your own advocate. Trial and error works for me. Neuroplasticity is fascinating. I wish you and Barry the best. Good luck with the reading of your new book. I am glad to hear you are no longer interested in the product containing seals......good on ya!

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I don't know why any adult person who has had a normal education would not know where Australia is. That's strange. Do they know about that new finding where the world is supposedly round? I hear it's becoming accepted fact! I LOVE Australians, they are so my people. So friendly and down to earth, the type I feel most comfortable with. To me they're a fair dinkum!

Yes, no seal pills. Not for me.

Good to see you post. I have missed seeing you around lately. The thing I like best about you (if you don't mind me getting personal for a second) is how thoughtful and insightful you are about health, how carefully you investigate stuff, which I find an appealing trait.

Best for now my Aussie friend, talk soon, Hank

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@jesfactsmon

I don't know why any adult person who has had a normal education would not know where Australia is. That's strange. Do they know about that new finding where the world is supposedly round? I hear it's becoming accepted fact! I LOVE Australians, they are so my people. So friendly and down to earth, the type I feel most comfortable with. To me they're a fair dinkum!

Yes, no seal pills. Not for me.

Good to see you post. I have missed seeing you around lately. The thing I like best about you (if you don't mind me getting personal for a second) is how thoughtful and insightful you are about health, how carefully you investigate stuff, which I find an appealing trait.

Best for now my Aussie friend, talk soon, Hank

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@avmcbellar forgot to type in the @avmcbellar in my previous post but nonetheless hope you to read it.
Hank

REPLY
@jesfactsmon

I don't know why any adult person who has had a normal education would not know where Australia is. That's strange. Do they know about that new finding where the world is supposedly round? I hear it's becoming accepted fact! I LOVE Australians, they are so my people. So friendly and down to earth, the type I feel most comfortable with. To me they're a fair dinkum!

Yes, no seal pills. Not for me.

Good to see you post. I have missed seeing you around lately. The thing I like best about you (if you don't mind me getting personal for a second) is how thoughtful and insightful you are about health, how carefully you investigate stuff, which I find an appealing trait.

Best for now my Aussie friend, talk soon, Hank

Jump to this post

Hi Hank, always a pleasure speaking with you. Haha, remember this was during a time when there was no internet and no cell phones! Australia was not common knowledge back then. I had cousins who visited. My parents owned a family restaurant at that time so they were introduced to many of our customers. People had no idea of the country they had come from, only knew my cousins had a funny accent.
I enjoyed learning new things so I spent a lot of time at my local library taking out non fictional books. Who would go to the library to learn about Australia? The country was unheard of on the TV national news. There was no cable then either. It is amazing how far we have come. Now everyone knows the country Australia and its popular actors/actresses. I believe technology has made a great impact in our society but I also see the downfalls. I am sorry to say I feel the movie “Idiocracy” is becoming a reality with the newer generations. During our time( when we were younger) we learned to do things the hard way without technology. I understand the basics and can speed up getting results through the use of technology. The younger generations are lost without technology today because they can’t do without cells phones or internet. I still have my slide rule, lol, an antique now. I know the operations of math and can figure out results quicker with a calculator but these kids have no clue how results are derived.
For a few weeks the emails stopped coming, so I couldn’t communicate with anyone on Connect. This happened once before for a few months but luckily the emails came back a lot sooner. Thanks to John, he has informed me who to contact if it should happen again.
I was thinking about you a few weeks earlier when I purchased Omega 3 fish oil for a pet rescue dog with joint issues. Yes, even my dog takes it, lol! Mini Pearl is doing much better now, much more alert. I took her off drugs that made her drowsy. I know people are trying to help but common! Yes, I am an advocate for health issues especially when it comes to my elderly mother. I am fortunate she listens to me at her age, 90. She is pretty sharp still despite her ailments. From time to time my husband and I will visit her at her apartment. Because I don’t drive, I do everything for her remotely. She still can ambulate and be somewhat independent. It is her low vision and her lack of understanding the english language that sets her back. We communicate using the internet daily. I taught her to use the Ipad and her cell phone. We both learn from each others experiences. As long as the medical staff knows you are knowledgeable they won’t mess with you. Sadly, the bottom line is the Benjamins. They will do what is best for them in that regards unless you speak out.
Great to see you are an advocate for yourself and Linda. Your research will pay off. I found many times doctors were not able to answer questions simply because they did not know. That is why I take it upon myself to learn what is best for me. I do the same for my mother. I tell her to try different things as you do with Linda.
By the way, this morning I took the ALA with food 30 mins prior to the ALC again with food. No issues so far. Before the daily 600 mg ALA gave me an energy boost. Now with the 300 mg ALA and 1200 mg ALC daily I hope to gain a bigger energy boost.
Hope you and Linda had a good day today. No worries when you get to the responses with the Emails. Take care, Toni

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rwinney, have you researched Glutathione and NAC for your eye ailments? I understand non-liposomal Glutathione is destroyed in the stomach. Can some of it be autoimmune related?

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@onamission

rwinney, have you researched Glutathione and NAC for your eye ailments? I understand non-liposomal Glutathione is destroyed in the stomach. Can some of it be autoimmune related?

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@onamission No, I have not but, I can check it out. Thank you.

REPLY
@avmcbellar

Hi Hank, always a pleasure speaking with you. Haha, remember this was during a time when there was no internet and no cell phones! Australia was not common knowledge back then. I had cousins who visited. My parents owned a family restaurant at that time so they were introduced to many of our customers. People had no idea of the country they had come from, only knew my cousins had a funny accent.
I enjoyed learning new things so I spent a lot of time at my local library taking out non fictional books. Who would go to the library to learn about Australia? The country was unheard of on the TV national news. There was no cable then either. It is amazing how far we have come. Now everyone knows the country Australia and its popular actors/actresses. I believe technology has made a great impact in our society but I also see the downfalls. I am sorry to say I feel the movie “Idiocracy” is becoming a reality with the newer generations. During our time( when we were younger) we learned to do things the hard way without technology. I understand the basics and can speed up getting results through the use of technology. The younger generations are lost without technology today because they can’t do without cells phones or internet. I still have my slide rule, lol, an antique now. I know the operations of math and can figure out results quicker with a calculator but these kids have no clue how results are derived.
For a few weeks the emails stopped coming, so I couldn’t communicate with anyone on Connect. This happened once before for a few months but luckily the emails came back a lot sooner. Thanks to John, he has informed me who to contact if it should happen again.
I was thinking about you a few weeks earlier when I purchased Omega 3 fish oil for a pet rescue dog with joint issues. Yes, even my dog takes it, lol! Mini Pearl is doing much better now, much more alert. I took her off drugs that made her drowsy. I know people are trying to help but common! Yes, I am an advocate for health issues especially when it comes to my elderly mother. I am fortunate she listens to me at her age, 90. She is pretty sharp still despite her ailments. From time to time my husband and I will visit her at her apartment. Because I don’t drive, I do everything for her remotely. She still can ambulate and be somewhat independent. It is her low vision and her lack of understanding the english language that sets her back. We communicate using the internet daily. I taught her to use the Ipad and her cell phone. We both learn from each others experiences. As long as the medical staff knows you are knowledgeable they won’t mess with you. Sadly, the bottom line is the Benjamins. They will do what is best for them in that regards unless you speak out.
Great to see you are an advocate for yourself and Linda. Your research will pay off. I found many times doctors were not able to answer questions simply because they did not know. That is why I take it upon myself to learn what is best for me. I do the same for my mother. I tell her to try different things as you do with Linda.
By the way, this morning I took the ALA with food 30 mins prior to the ALC again with food. No issues so far. Before the daily 600 mg ALA gave me an energy boost. Now with the 300 mg ALA and 1200 mg ALC daily I hope to gain a bigger energy boost.
Hope you and Linda had a good day today. No worries when you get to the responses with the Emails. Take care, Toni

Jump to this post

@jesfactsmon Hank I had posted a reply to one of your posts, ”I don’t know why.....” on Monday, Labor Day. I know you are busy with the emails, so no worries. Just letting you know. By the way, I am sending a thank you to you and Linda for the additional info on the tea. Good to know. I was wondering about that. I plan to sip it iced. I wish I had the tea sooner to try though. 🙁 I got a headache again today. I get the pain behind my bad eye now as well. Don’t know if it is caused by the vision changes related to the eye exercises. The good news is it only lasts a day or 2. Tomorrow is another day. Toni

REPLY
@avmcbellar

Hi Hank, always a pleasure speaking with you. Haha, remember this was during a time when there was no internet and no cell phones! Australia was not common knowledge back then. I had cousins who visited. My parents owned a family restaurant at that time so they were introduced to many of our customers. People had no idea of the country they had come from, only knew my cousins had a funny accent.
I enjoyed learning new things so I spent a lot of time at my local library taking out non fictional books. Who would go to the library to learn about Australia? The country was unheard of on the TV national news. There was no cable then either. It is amazing how far we have come. Now everyone knows the country Australia and its popular actors/actresses. I believe technology has made a great impact in our society but I also see the downfalls. I am sorry to say I feel the movie “Idiocracy” is becoming a reality with the newer generations. During our time( when we were younger) we learned to do things the hard way without technology. I understand the basics and can speed up getting results through the use of technology. The younger generations are lost without technology today because they can’t do without cells phones or internet. I still have my slide rule, lol, an antique now. I know the operations of math and can figure out results quicker with a calculator but these kids have no clue how results are derived.
For a few weeks the emails stopped coming, so I couldn’t communicate with anyone on Connect. This happened once before for a few months but luckily the emails came back a lot sooner. Thanks to John, he has informed me who to contact if it should happen again.
I was thinking about you a few weeks earlier when I purchased Omega 3 fish oil for a pet rescue dog with joint issues. Yes, even my dog takes it, lol! Mini Pearl is doing much better now, much more alert. I took her off drugs that made her drowsy. I know people are trying to help but common! Yes, I am an advocate for health issues especially when it comes to my elderly mother. I am fortunate she listens to me at her age, 90. She is pretty sharp still despite her ailments. From time to time my husband and I will visit her at her apartment. Because I don’t drive, I do everything for her remotely. She still can ambulate and be somewhat independent. It is her low vision and her lack of understanding the english language that sets her back. We communicate using the internet daily. I taught her to use the Ipad and her cell phone. We both learn from each others experiences. As long as the medical staff knows you are knowledgeable they won’t mess with you. Sadly, the bottom line is the Benjamins. They will do what is best for them in that regards unless you speak out.
Great to see you are an advocate for yourself and Linda. Your research will pay off. I found many times doctors were not able to answer questions simply because they did not know. That is why I take it upon myself to learn what is best for me. I do the same for my mother. I tell her to try different things as you do with Linda.
By the way, this morning I took the ALA with food 30 mins prior to the ALC again with food. No issues so far. Before the daily 600 mg ALA gave me an energy boost. Now with the 300 mg ALA and 1200 mg ALC daily I hope to gain a bigger energy boost.
Hope you and Linda had a good day today. No worries when you get to the responses with the Emails. Take care, Toni

Jump to this post

@avmcbellar
Thank-you for making me aware of this message. I try to view every new post each morning since the previous day but it is amazing how many I still miss. I'm so glad you pointed me back to this one, I would not want to miss it for the world! Let me address in order some things you mentioned.

I can hardly believe how much has changed since, say, (gosh pick any date before the 90's or so) 1978 when we were married. I feel like I have lived two lives in two different times of history. I think I have lived through the time of the most dramatic changes in the history of our planet, technology-wise and culturally. Culture shock abounds now, and even more so since the start of covid19.

Idiocracy. Yes!

Omega3 - the image of an innocent seal face came to me immediately when I saw that word "seal" on the AUUM website. So much for that. I remember when my wife was contemplating starting to eat fish again a few years back. Then she saw the cartoon "Finding Nemo". So much for that idea. Couldn't eat Nemo!

So nice your mom is still as functional as she sounds. Mine too. She is 98, gorgeous, stylish, and still very with it. My sister lives with her and watches over her. It's such a tremendous joy that she is living, I just hope I get to visit again while she is still healthy and alive. She is in Connecticut. We are in Tennessee. We video chat but I miss her terribly anyway. You said your mom has trouble with English. I thought she was Australian? Maybe I missed something, I do that a lot.

Linda feels the best thing she can do for herself is avoid drugs. Between that and her allergy to OTC stuff, she is pretty much drug free. I got her low dose naltrexone recently, not sure when/if she will ever take it. Latest is she is trying PEA now based on inputs from @elizm some of who's posts I really enjoyed reading recently. Smart lady.

Thanks again for pointing me to your post Toni. Best to you, Hank

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