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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
Chris Trout, Volunteer Mentor | @artscaping | Nov 22, 2020
In reply to @surfing "Dear rwhinney, I think i had posted early in the months to you re: dry eye,..." + (show)
@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 !!

Jump to this post

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

REPLY
1 reply
steeldove | @steeldove | Nov 22, 2020
In reply to @onamission "steeldove, the vision issues you mentioned including neuropathy match symptoms from a possible thiamine deficiency. The..." + (show)
@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/

Jump to this post

@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.

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | Nov 22, 2020
In reply to @artscaping "Good morning @surfing. I am replying to your post to Rachel Whinney. She has taken a..." + (show)
@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.

REPLY
onamission | @onamission | Nov 22, 2020

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

REPLY
steeldove | @steeldove | Nov 22, 2020

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

REPLY
taldavs | @taldavs | Feb 20, 2021
In reply to @jesfactsmon "@taldavs Hi, I'd also like to welcome you here. You joined back in January so perhaps..." + (show)
@jesfactsmon

@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

Jump to this post

Hello. I don't really have symptoms, my eyes get irritated and watery often- but I've always had bad allergies . Every so often it feels like I've been poked in the eye. It's not comfortable but not anything i can't handle. Mostly it's my peripheral vision that's fading in my left eye ( good eye) and completely gone in right eye. My Last neuro eye appt my left was holding up, but my right eye i can now only see outlines of images and some light comes through. I've also developed a sensitivity to sunlight and have to wear polarized driving glases that dim the sunlight and also block light from the side. I also have seen a retina Specialist and was told that I have a tiny hole in my retinas it's not my main cause of concern or the problem. it's my optic nerves.. I was referred to UCLA EYE- although Mayor is much closer. I have an appt in May.

REPLY
1 reply
taldavs | @taldavs | Feb 20, 2021
In reply to @taldavs "Hello. I don't really have symptoms, my eyes get irritated and watery often- but I've always..." + (show)
@taldavs

Hello. I don't really have symptoms, my eyes get irritated and watery often- but I've always had bad allergies . Every so often it feels like I've been poked in the eye. It's not comfortable but not anything i can't handle. Mostly it's my peripheral vision that's fading in my left eye ( good eye) and completely gone in right eye. My Last neuro eye appt my left was holding up, but my right eye i can now only see outlines of images and some light comes through. I've also developed a sensitivity to sunlight and have to wear polarized driving glases that dim the sunlight and also block light from the side. I also have seen a retina Specialist and was told that I have a tiny hole in my retinas it's not my main cause of concern or the problem. it's my optic nerves.. I was referred to UCLA EYE- although Mayor is much closer. I have an appt in May.

Jump to this post

Also thanks for the welcome. I was is missing in action for a bit- I admit I got a little overwhelmed. but im better a little more optimistic everyday!

REPLY
taldavs | @taldavs | Feb 20, 2021
In reply to @johnbishop "Hello @taldavs, Welcome to Mayo Clinic Connect. I know it can be frustrating when the doctors..." + (show)
@johnbishop

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.

Jump to this post

Hi I had not given much thought to a 2nd opinion. My neuro doc didnt even mention after our most recent appt. But he referred me to a new Retina Specialist after he concluded that he was just " grasping at straws"his words.and the new Retina doc referred me to UCLA EYE.

REPLY
1 reply
Erika | @erikas | Feb 22, 2021
In reply to @taldavs "Hi I had not given much thought to a 2nd opinion. My neuro doc didnt even..." + (show)
@taldavs

Hi I had not given much thought to a 2nd opinion. My neuro doc didnt even mention after our most recent appt. But he referred me to a new Retina Specialist after he concluded that he was just " grasping at straws"his words.and the new Retina doc referred me to UCLA EYE.

Jump to this post

@taldavs I'd like to extend my welcome to Mayo Clinic Connect, a place to give and get support.

That's tough. It's great you were referred. When do you go to UCLA?

REPLY
Barry Sheales | @user_che214927 | Feb 24, 2021

You in luck Rachel. I also have PN and with it the eye problem you are experiencing. After a long wait to eventually get an appointment with a Neuro ophthalmologist, I have one early next month, and will contact you with, hopefully, some answers to both of our queries. Hang in darling!
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