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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 | Jul 8, 2020
In reply to @johnbishop "Rachel @rwinney that is terrific news!! I look forward to hearing about your appointment at Mayo..." + (show)
@johnbishop

Rachel @rwinney that is terrific news!! I look forward to hearing about your appointment at Mayo Jacksonville and seeing a Mayo opthamologist.

I was on a 4 month waiting list to see a Mayo opthamologist and being a little frustrated about the wait list and not being able to make an appointment with them in 2017 and 2019 (having to see a local regular eye doctor for glasses), I decided to see if I could get an appointment online. I requested one and then missed their call. Called them back late in the day last Friday and asked them what's the deal with the waiting list and does it change often. The lady told me it does change and I asked do you call people on the list when an opening occurs...then explained again I had an exam in 2015 where the doctor said I had the start of cataracts but only needed new glasses. Also told her I tried to see them in 2019 due to vision problems and was unable to make an appointment. The local eye doctor said she would rate my cataracts a 2 on a scale of 1 to 4 with 4 being bad. She said let me take a look at the schedule. Then she said how about July 15th at 7:30 am? Needless to say I said YES!

My sister who is 6 years younger than me just had cataract surgery on both of her eyes and had lenses implanted. She said it's strange waking up and reaching for her glasses that she no longer needs. That gives me lots of hope

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@johnbishop Wow, wonderful news right back atcha! Yes, have hope. Cataract surgery was a huge benefit to me. It brought clarity and crisp color to my vision that I didnt know I had been missing which was like living in a whole new world!! I will never forget looking at my dog for the first time and seeing the vivid color of her fur and just how blue her eyes actually were. I was like a kid in a candy shop til I looked in the mirror and saw what my face (aging) really looked like! Haha, beware. I"m so happy you are scheduled. All the best. It's exciting! Regarding me seeing a Mayo Opthamologist...I shall keep hope alive but, will believe it when I see it.

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Mentor
Rachel, Volunteer Mentor | @rwinney | Jul 8, 2020
In reply to @jesfactsmon "Gee Rachel, right off the bat I'd nix the rose colored glasses. I have learned enough..." + (show)
@jesfactsmon

Gee Rachel, right off the bat I'd nix the rose colored glasses. I have learned enough about you to know that you would never want to view the world through those. Not sure about the other stuff. Best to you, Hank

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@jesfactsmon Haha, you got that right Hank! 😊

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avmcbellar | @avmcbellar | Jul 8, 2020
In reply to @rwinney "Hello all, I went to a 2nd neuro opthamologist yesterday. My first was in 2015 and..." + (show)
@rwinney

Hello all,

I went to a 2nd neuro opthamologist yesterday. My first was in 2015 and I had not been diagnosed with SFN then. Because my photophobia continues to debilitate me and dry eye seems to be gaining ground, I thought time for another discussion and look...new theories, new meds, new therapies, new Dr., ...who knows??? In addition, I was seeking info on Corneal Confocal Microscopy in hopes of being progressive. Here's what I learned:

1. After being tested, my dry eye is of mild to moderate status

2. It is believed that I suffer most from neuropathic pain/ Central Sensitization

3. Corneal Confocal Microscopy, from this Drs perspective, is not believed to be of much benefit to me nor did he have the microscope or think worthy of pusuing at the local hospital that does have it. (I will see a new Neurologist at that hospital next week and pursue again)

Here is what I was offered:

1. FL-41 (rose/crimson tinted glasses). Axon Optics was suggested but it appears there are other vendor options

2. Novo Tears - Hunt Valley Pharmacy = plasma from your blood draw is recreated into your own natural tear drops in a bottle. 6 month supply = approx $400

3. Restatis or Xiidra script

4. Inveltys (loteprednol etabonate othamalic suspension) 1% drops. Corticosteroids. Free sample given to me for chronic pain of eye. Although I've been on Prednisolone drops since transplants so I need to look into that today with my current prescribing Dr. Doubt I can do both and this is why I hate things being given to me on a Drs way out the door....here, try this!

Perhaps the best news of my visit was the fact that this Dr. picked up his phone and voice to text a message to a Mayo Clinic Opthamologist, about my condition since corneal surgery 7 years ago, and told him I am coming to Mayo rehab, FL in October. The goal is to have me seen while there! Also, Mayo has the CCM and maybe it might be worthy of a look.

I'm going to keep positive on this whole plan but am not holding my breath completely as I know how these good intentions sometimes go. Time will tell!

As with most anticipated Dr visits...I go prepared with lists and questions and sure enough wait (I was there 2 1/2 hours total), locked in a 10x10 room for 1 hr alone and waiting for this Dr, uncomfortable from body pain and multiple flares from uncomfortable conditions and positions. My point is, he came in like wild fire...threw a lot at me, was all over the place, in and out, with another patient, etc... You guys know the drill! 🤪

I will be interested to hear of anyone's experience or knowledge of the products above (except Restatis/Xiidra as we've covered those products quite well...plus, I cant afford them anyway - haha!)

Have a comfortable day everyone.
Be well,
Rachel

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Hi Rachel @rwinney I am happy to hear of your visit! Great, you got a few suggestions with your feedback. Will the rose tinted glasses filter out the blue light since it can cause photophobia? If you can try the inveltys in place of your current prednisolone eye drops, I would give it a shot for the pain. I don’t know about the Novo Tears. No experience with it. Doesn’t sound like it will make a significant difference. Ask your pharmacist if this product is worth trying. What makes it better than the others? I know it is derived from fluids in your body but some other cheaper products may work just as well for you. I think the Novo Tears is good for someone who has allergies to other products. Let me know of your experience with the neuro ophthalmologist at the Mayo Clinic in Jacksonville, Florida. I am considering visiting next year for eye surgery to correct my diplopia. Good luck. Wish you well and keep up with the optimism. Attitude can make all the difference!

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1 reply
Mentor
Rachel, Volunteer Mentor | @rwinney | Jul 8, 2020
In reply to @avmcbellar "Hi Rachel @rwinney I am happy to hear of your visit! Great, you got a few..." + (show)
@avmcbellar

Hi Rachel @rwinney I am happy to hear of your visit! Great, you got a few suggestions with your feedback. Will the rose tinted glasses filter out the blue light since it can cause photophobia? If you can try the inveltys in place of your current prednisolone eye drops, I would give it a shot for the pain. I don’t know about the Novo Tears. No experience with it. Doesn’t sound like it will make a significant difference. Ask your pharmacist if this product is worth trying. What makes it better than the others? I know it is derived from fluids in your body but some other cheaper products may work just as well for you. I think the Novo Tears is good for someone who has allergies to other products. Let me know of your experience with the neuro ophthalmologist at the Mayo Clinic in Jacksonville, Florida. I am considering visiting next year for eye surgery to correct my diplopia. Good luck. Wish you well and keep up with the optimism. Attitude can make all the difference!

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Thanks! Will do.

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2 replies
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Rachel, Volunteer Mentor | @rwinney | Jul 8, 2020
In reply to @rwinney "Thanks! Will do." + (show)
@rwinney

Thanks! Will do.

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...and yes, the rose tint filters out blue light. fluorescent light, flashing lights, bright lights etc...

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1 reply
avmcbellar | @avmcbellar | Jul 8, 2020
In reply to @rwinney "...and yes, the rose tint filters out blue light. fluorescent light, flashing lights, bright lights etc..." + (show)
@rwinney

...and yes, the rose tint filters out blue light. fluorescent light, flashing lights, bright lights etc...

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Good! Then the glasses will be also filter out the blue light from the TV and electronic gadgets like the cell phones, tablets, etc. There is blue light too in the LED light bulbs depending on what type of light color chosen, some more than others. No worries then with lighting. The tinted glasses will help. You can change the settings again on your devices. Perhaps you won’t need sunglasses indoors as much now. All sounds exciting to explore.. Getting my new prescription glasses online was quick, easy, and cheaper. I even tried them on virtually. Who needs eye glass shops? I was happy with my purchase so were my eyes! I got relief from the strain which in turn decreased the photophobia so I could widely open both eyes again.

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1 reply
Mentor
Rachel, Volunteer Mentor | @rwinney | Jul 8, 2020
In reply to @avmcbellar "Good! Then the glasses will be also filter out the blue light from the TV and..." + (show)
@avmcbellar

Good! Then the glasses will be also filter out the blue light from the TV and electronic gadgets like the cell phones, tablets, etc. There is blue light too in the LED light bulbs depending on what type of light color chosen, some more than others. No worries then with lighting. The tinted glasses will help. You can change the settings again on your devices. Perhaps you won’t need sunglasses indoors as much now. All sounds exciting to explore.. Getting my new prescription glasses online was quick, easy, and cheaper. I even tried them on virtually. Who needs eye glass shops? I was happy with my purchase so were my eyes! I got relief from the strain which in turn decreased the photophobia so I could widely open both eyes again.

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That's what holds me back...not trying on glasses in person. Good for you that you had success this way. I'm going to explore these glasses...not sure about them yet. I just spoke to my Cornea Dr office and they said ok to try the new steroid drop to see if by chance it offers better relief. I'll give it a whirl! Hey, thanks for being such a great contributor on Connect. Have a beautiful day.
Rachel

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2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Jul 8, 2020
In reply to @rwinney "That's what holds me back...not trying on glasses in person. Good for you that you had..." + (show)
@rwinney

That's what holds me back...not trying on glasses in person. Good for you that you had success this way. I'm going to explore these glasses...not sure about them yet. I just spoke to my Cornea Dr office and they said ok to try the new steroid drop to see if by chance it offers better relief. I'll give it a whirl! Hey, thanks for being such a great contributor on Connect. Have a beautiful day.
Rachel

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@rwinney have you ever seen those ads on TV with people virtually trying on glasses? Pretty cool but would still want to see before buying 🙂 https://apps.apple.com/us/app/warby-parker/id1107693363

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2 replies
Mentor
Rachel, Volunteer Mentor | @rwinney | Jul 8, 2020
In reply to @johnbishop "@rwinney have you ever seen those ads on TV with people virtually trying on glasses? Pretty..." + (show)
@johnbishop

@rwinney have you ever seen those ads on TV with people virtually trying on glasses? Pretty cool but would still want to see before buying 🙂 https://apps.apple.com/us/app/warby-parker/id1107693363

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@johnbishop Haha yes, I have! It's not so much about the visual as it is the feel for me. I'm a picky girl. 😊 I have actually ordered from Warby Parker...they send you 5 you pick pairs to try on for free. It was fun!

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2 replies
avmcbellar | @avmcbellar | Jul 8, 2020
In reply to @rwinney "That's what holds me back...not trying on glasses in person. Good for you that you had..." + (show)
@rwinney

That's what holds me back...not trying on glasses in person. Good for you that you had success this way. I'm going to explore these glasses...not sure about them yet. I just spoke to my Cornea Dr office and they said ok to try the new steroid drop to see if by chance it offers better relief. I'll give it a whirl! Hey, thanks for being such a great contributor on Connect. Have a beautiful day.
Rachel

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Rachel, you can try on glasses with the rose tint. Make a note of the style you like then look online and try on a pair with the very same style virtually. You will be amazed at the savings! Some glasses may be offered to filter out blue light without a tint. Have fun shopping! You are welcomed. I feel we are all on the same boat and need to help or look out for one another, especially when the answers are not so obvious.

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