Eyes and Neuropathy

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 !!

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/

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

@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

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.

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.

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.