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.

@rwinney

@phoenix0509 I wish you luck in getting there! Keep persisting and advocating for yourself. It'll happen.

Aww, thanks David. I try. Here is a cute example of my motto! 😊

Have a pleasant day.
Rachel

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@rwinney , Rachel , this is perfect. !!

Liked by lorirenee1, rwinney

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@jesfactsmon

@phoenix0509 David, Polymyalgia Rheumatica, radiculopathy, photopsia and dry eye, you have it all. Oh, and just for good measure, toss in peripheral neuropathy as well, you know, the kind that makes it almost impossible for you to function at all? Now you've got the complete package. Gee Whillikers David, what's the deal anyway? You must've been one bad hombre in another life. Did you steal kid's Halloween candy and throw dirt balls at sweet little old ladies walking down the street?

Just my way of saying I hope you get an in to JH. Feel free to show them this post. Or don't, better yet. 😊 Cheers, Hank

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@jesfactsmon , Hank, you had me laughing…I do hope to sort these painful symptoms out at Johns Hopkins. Send Jokes !!! Best, David

Liked by Hank

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Hi all, Today's member spotlight features @rwinney, a member well known to members of the Eye Conditions group. Read her interview to learn more about Rachel: meaningful moments she's had on Mayo Clinic Connect, what motivates and inspires her, and which Hollywood actor would play her in a movie about her life.

– Where there's a Winney, there's a way: Meet @rwinney https://connect.mayoclinic.org/page/about-connect/newsfeed-post/where-theres-a-winney-theres-a-way-meet-rwinney/

+Follow the About Connect page to see all the Member Spotlights and be notified when new spotlights are published: https://connect.mayoclinic.org/page/about-connect/tab/newsfeed/

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@jesfactsmon

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

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Hi Hank @jesfactsmon. Thank you for your last reply. I am so glad Linda found the Shifa tea for relief. It certainly helps. On the second day, my headache shifted to the other side(left) of my hear. No matter which side of my head is involved for my headache, I get a pain behind the back of my bad(right) eye. It makes it harder to do things because I feel miserable. I tried Tylenol long time ago for my headache and it did absolutely nothing. Needless to say, I don’t bother with any pain meds.
Thank you. I have been doing my eye exercises daily for almost 4 months now. I did notice that the adjustment time for the bad eye to align with the other eye has become less but it still causes motion sickness. I feel the change in my ears more so now. It is similar to the feeling after vestibular exercises the physical therapist did with me to move the crystals in my ears to regain my balance. It was a very uncomfortable feeling because it made me dizzier. After a few seconds it would go away. I did get the headache the next day.
I found an app to use daily for the eye exercises. I repeat an exercise 4 times. I will increase the repetition at 6 months then 9 months. I plan to stop at 12 months or when I do not see any more benefits. I will let my eyes rest for several months before any strabismus surgery since the results will be permanent.
I agree neuroplasticity is an interesting subject. The only problem is not much is known. I basically learn on my own through trial and error. It does take a lot of discipline and learning about yourself. I listen to medical experts and the results of medical research to determine my next moves. It is hard to trust doctors when the certainty of their motivation is not known. Is it monetary or genuine caring? It is scary because the medical staff is mostly younger than us. We have seen the behavior of the generations following us. Being an advocate for yourself has become even more important. It is hard but that is what makes it worth it! Take care of yourselves. Toni

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hi I'm currently seeing a neuro Optamolgist for optic neuropathy, has also (been called atrophy and optic neuritis)- for approx 8 months. Ive had had much blood work, an MRI, and CT SCAN. My eye doc says he can't figure out why an otherwise healthy person would have optic nerve damage. He said there was no cure, we just monitor progression. He said steroids were an option thats not guaranteed, but could help, but we were gonna do tests to see if we can figure whats causing it, first. All my test has come back negative- including a visit to a Rheumatologist and Hemotologist. The last time I spoke with my eye doctor, he mentioned to call to discuss the eye steroids-after my hemotologist appt-that was nearly a month ago and I haven't been able to reach him since. So now I'm just hanging until my follow up appt that in 3 weeks. I feel like my faith is being tested for a reason, but I'm kinda discouraged at how bad this could get before my testimony coms to fruition.

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@taldavs

hi I'm currently seeing a neuro Optamolgist for optic neuropathy, has also (been called atrophy and optic neuritis)- for approx 8 months. Ive had had much blood work, an MRI, and CT SCAN. My eye doc says he can't figure out why an otherwise healthy person would have optic nerve damage. He said there was no cure, we just monitor progression. He said steroids were an option thats not guaranteed, but could help, but we were gonna do tests to see if we can figure whats causing it, first. All my test has come back negative- including a visit to a Rheumatologist and Hemotologist. The last time I spoke with my eye doctor, he mentioned to call to discuss the eye steroids-after my hemotologist appt-that was nearly a month ago and I haven't been able to reach him since. So now I'm just hanging until my follow up appt that in 3 weeks. I feel like my faith is being tested for a reason, but I'm kinda discouraged at how bad this could get before my testimony coms to fruition.

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Hello @taldavs, Welcome to Mayo Clinic Connect. I know it can be frustrating when the doctors are not able to diagnose the cause of your optic nerve damage. Have you thought about seeking a second opinion or help at a teaching hospital or a major hospital like Mayo Clinic? If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

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@taldavs

hi I'm currently seeing a neuro Optamolgist for optic neuropathy, has also (been called atrophy and optic neuritis)- for approx 8 months. Ive had had much blood work, an MRI, and CT SCAN. My eye doc says he can't figure out why an otherwise healthy person would have optic nerve damage. He said there was no cure, we just monitor progression. He said steroids were an option thats not guaranteed, but could help, but we were gonna do tests to see if we can figure whats causing it, first. All my test has come back negative- including a visit to a Rheumatologist and Hemotologist. The last time I spoke with my eye doctor, he mentioned to call to discuss the eye steroids-after my hemotologist appt-that was nearly a month ago and I haven't been able to reach him since. So now I'm just hanging until my follow up appt that in 3 weeks. I feel like my faith is being tested for a reason, but I'm kinda discouraged at how bad this could get before my testimony coms to fruition.

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@taldavs
Hi, I'd also like to welcome you here. You joined back in January so perhaps you have been monitoring the forum somewhat already. I also joined then and I can tell you that just from what I have heard from others there are a lot of things that can cause neuropathy, if that is what you have. Besides obvious causes like diabetes and chemo, one thing that seems to be a cause for a lot of people is surgery. Another thing believe it or not are injections, any kind of injections. There are many other things such as too much B6 or too little B12 in your system. So just be open to a wide realm of possible causes is my point. So, what symptoms have you had so far? Hank

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I know that dry eyes are part of small fiber neuropathy, but a couple of weeks ago my left eye began doing odd things–blurry, vision impaired, jumping, etc.,–so I saw the ophthalmologist that has cared for my eyes for the past 15 years including two cataract surgeries. He's frequently commented that my eyes are very healthy, but this week he thinks what's going on in my left eye is connected to my neuropathy. Now the damn neuropathy has hit me from head to toe…where else is it going to get me?

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@steeldove

I know that dry eyes are part of small fiber neuropathy, but a couple of weeks ago my left eye began doing odd things–blurry, vision impaired, jumping, etc.,–so I saw the ophthalmologist that has cared for my eyes for the past 15 years including two cataract surgeries. He's frequently commented that my eyes are very healthy, but this week he thinks what's going on in my left eye is connected to my neuropathy. Now the damn neuropathy has hit me from head to toe…where else is it going to get me?

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steeldove, the vision issues you mentioned including neuropathy match symptoms from a possible thiamine deficiency. The lack of vitamin B1 is the cause of a long list of health issues instigated by a deficiency of sufficient magnesium needed to make thiamine bioactive. Thiamine tetrahydrofurfuryl is a thiamine form that passes through the blood/brain barrier and is worth researching. Always consult with your health care professional before using any supplement.
.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4039400/#:~:text=Conclusion-,Visual%20loss%20due%20to%20optic%20neuropathy%20is%20a%20rare%20manifestation,of%20the%20central%20nervous%20system.
https://www.healthline.com/nutrition/thiamine-deficiency-symptoms#TOC_TITLE_HDR_7
https://www.aaojournal.org/article/S0161-6420(00)00625-4/fulltext
https://knowledgeofhealth.com/ignored-vitamin-cure-for-macular-degeneration/
https://www.krispin.com/magnes.html
https://nootropicsexpert.com/vitamin-b1-thiamine/

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Dear rwhinney, I think i had posted early in the months to you re: dry eye, cataract sx with my husbands right eye. He had a Panoptix lens put in june 29th.
after that photophobia set in weeks and weeks went by with 5 visits to the surgeon, and all they kept saying was "dry eye" put these drops in, these drops in,
it got relentless! Lotamax was prescribed for weeks on end, he quit ! cant go outside in sun, fish, surf, beach walk, waits till the sun goes down !, well we looked for 2 more opinions, found another doc who said a trick using a drop called PILOCARPINE for glaucoma, however, he does not have that. None seen
the idea was to try this drop once a day to help get fluid out of back of eye somehow to shrink the pupil, like dilation, to let less light in. He had severe photophobia. It helped a bit, but still , not much improvment. Finally went to BASCH PALMER EYE INSTITUTE, last week, that doctor was riduculous! he didnt even spend 15 minutes, to tell him nothing he hadnt already know. He couldt help him or refer him to anyone, 2 hour drive to get there in Palm Beach Gardens! so my husband no feels like there is no hope but time ! the lens is a powerful lens, which they should of tried to sell him the basic iol, but I guess
my guy wanted the best, and banked on seeing crystal clear. (That doesnt help the photo phobia). so we are back to square one. SICK OF THIS FEEL so
sorry for him, it has been 6 months now, no one has any anwsers, 5 doctors late !!

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@surfing

Dear rwhinney, I think i had posted early in the months to you re: dry eye, cataract sx with my husbands right eye. He had a Panoptix lens put in june 29th.
after that photophobia set in weeks and weeks went by with 5 visits to the surgeon, and all they kept saying was "dry eye" put these drops in, these drops in,
it got relentless! Lotamax was prescribed for weeks on end, he quit ! cant go outside in sun, fish, surf, beach walk, waits till the sun goes down !, well we looked for 2 more opinions, found another doc who said a trick using a drop called PILOCARPINE for glaucoma, however, he does not have that. None seen
the idea was to try this drop once a day to help get fluid out of back of eye somehow to shrink the pupil, like dilation, to let less light in. He had severe photophobia. It helped a bit, but still , not much improvment. Finally went to BASCH PALMER EYE INSTITUTE, last week, that doctor was riduculous! he didnt even spend 15 minutes, to tell him nothing he hadnt already know. He couldt help him or refer him to anyone, 2 hour drive to get there in Palm Beach Gardens! so my husband no feels like there is no hope but time ! the lens is a powerful lens, which they should of tried to sell him the basic iol, but I guess
my guy wanted the best, and banked on seeing crystal clear. (That doesnt help the photo phobia). so we are back to square one. SICK OF THIS FEEL so
sorry for him, it has been 6 months now, no one has any anwsers, 5 doctors late !!

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Good morning @surfing. I am replying to your post to Rachel Whinney. She has taken a break from Connect and we wish her well and hope for her return.

I am not an expert on eyes, except for 1 condition and that is the dry eye which is severely impacted by neuropathy and a life of living in dry climates at an altitude over 5000 feet. My ophthalmologist and his father were my clinicians for more than 30 years. They followed the course of my affliction.

As a shared decision-making team, we have tried everything including the roller inside the eyelid because the lacrimal oil in the glands was drying up very quickly. I suffered through two years of daily self-treatment so that my eyes had enough moisture to qualify for the cataract surgeries. I have used drops and drops and drops and still use Xiidra.

Finally, my clinician just sank down in his chair after an examination and said, "you need to live in a rain forest, not on top of a mountain with extremely low humidity." The cells in my cornea were just drying up leading to the visual changes like you experienced. Here is what I chose to do……..I moved to Minnesota….where everything is flat and humidity is usually in the 50% range. I had been struggling with humidity as low as 9%.

As you might guess…..I no longer hover near the refrigerator where I keep the preservative-free medications. So my response to you is to assess your environment. Do what you can to care for your eyes. Find someone who is super resourceful.

That might mean a visit to a medical institution like Mayo Clinic. Have you thought about that? I am going to ask @johnbishop to send you the application process information. Please consider applying. And please take care of those eyes….we can't just replace them with new ones.

May you be free of suffering and the causes of suffering.
Chris

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@onamission

steeldove, the vision issues you mentioned including neuropathy match symptoms from a possible thiamine deficiency. The lack of vitamin B1 is the cause of a long list of health issues instigated by a deficiency of sufficient magnesium needed to make thiamine bioactive. Thiamine tetrahydrofurfuryl is a thiamine form that passes through the blood/brain barrier and is worth researching. Always consult with your health care professional before using any supplement.
.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4039400/#:~:text=Conclusion-,Visual%20loss%20due%20to%20optic%20neuropathy%20is%20a%20rare%20manifestation,of%20the%20central%20nervous%20system.
https://www.healthline.com/nutrition/thiamine-deficiency-symptoms#TOC_TITLE_HDR_7
https://www.aaojournal.org/article/S0161-6420(00)00625-4/fulltext
https://knowledgeofhealth.com/ignored-vitamin-cure-for-macular-degeneration/
https://www.krispin.com/magnes.html
https://nootropicsexpert.com/vitamin-b1-thiamine/

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@onamission Thank you for the useful information. As I have mono vision, and my recent issue is only with my left eye, the one for close-up vision, and since small fiber neuropathy symptoms began in June 2016 and SFN was diagnosed at Mayo in January 2017, neuropathy has overtaken my body, moving from my feet, up my legs, in my trunk, my hands, and now my left eye, I don't think thiamine deficiency is the issue. However, your post prompted me to delve into thiamine. For more than 35 years, I've been on a medically-prescribed program of vitamins and minerals, not including thiamine, but reading about the many reasons that thiamine supports the body, particularly an aging body (I'm heading into 83), I added thiamine to my order from Swanson. Thanks again.

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@artscaping

Good morning @surfing. I am replying to your post to Rachel Whinney. She has taken a break from Connect and we wish her well and hope for her return.

I am not an expert on eyes, except for 1 condition and that is the dry eye which is severely impacted by neuropathy and a life of living in dry climates at an altitude over 5000 feet. My ophthalmologist and his father were my clinicians for more than 30 years. They followed the course of my affliction.

As a shared decision-making team, we have tried everything including the roller inside the eyelid because the lacrimal oil in the glands was drying up very quickly. I suffered through two years of daily self-treatment so that my eyes had enough moisture to qualify for the cataract surgeries. I have used drops and drops and drops and still use Xiidra.

Finally, my clinician just sank down in his chair after an examination and said, "you need to live in a rain forest, not on top of a mountain with extremely low humidity." The cells in my cornea were just drying up leading to the visual changes like you experienced. Here is what I chose to do……..I moved to Minnesota….where everything is flat and humidity is usually in the 50% range. I had been struggling with humidity as low as 9%.

As you might guess…..I no longer hover near the refrigerator where I keep the preservative-free medications. So my response to you is to assess your environment. Do what you can to care for your eyes. Find someone who is super resourceful.

That might mean a visit to a medical institution like Mayo Clinic. Have you thought about that? I am going to ask @johnbishop to send you the application process information. Please consider applying. And please take care of those eyes….we can't just replace them with new ones.

May you be free of suffering and the causes of suffering.
Chris

Jump to this post

Thanks for the tag Chris @artscaping. @surfing and other members wanting to make an appointment or seek a second opinion at Mayo Clinic — contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

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steeldove, pay particular attention to the forms that best pass through the blood/brain barrier. Also, because magnesium is so deficient in so many it has led to a staggering number of health tragedies. I hope you delve further into the subject of thiamine and learn it's impact on the the GI system

Liked by steeldove

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@onamission I've been taking magnesium for 35+ years.

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