How to cope with losing vision?

posted 1 year ago in Emotional
Post # 2
9833 posts
Buzzing Beekeeper
  • Wedding: March 2014 - Chicago, IL

Oh sweet bee, I am so sorry you got this devastating news. 

A few things – did your neurologist ever follow up with an MRI/CT of your brain after your cataplexy? First things first, you need to rule out if it’s primary or secondary. Cataplexy affects the levels of a certain protein, and a decrease in that same protein is what causes retina dystrophy (it’s a neurotransmitter called hypocretin if you want to look it up). PM me if you want me to send you any medical articles from journals, and I would be more than happy to break them down into a digestable format.

Next – shame on your medical team. My best advice to you, if you live in the US, is to get yourself into a teaching hospital/medical university. There you’ll receive a team of the youngest, brightest physcians that work collaboratively across fields to give you the best patient care using the most recent/advanced medical technology.

Just yesterday, I attened a talk by a friend and learned about her work on using a special type of stem cell to restore photoreceptors in the eyes of mice with glaucoma. Their work sounds really promising, and hopefully will lead to some clinical trials – and eventually (if safe/effective), a widely available cure for photoreceptor-associated blindness. Please feel free to PM me if you would like any details. I’d be happy to reach out to her and see if she can pull from her connections and find an expert in your local area. 

So many hugs.

Post # 3
164 posts
Blushing bee

View original reply
purplefae :  Oh my goodness, bee! You are amazing to go through all this and stay standing as tall as you are! I feel so bad that you’re going through this without being able to be of much help. Im sorry youve had bad expereinces with many doctors, and I hope you see through all this. I believe in you. 


P.S. I have very poor vision myself, and i have these moles in my eyes that make it worse with ight, so I pretty much have to weart sunglasses all the time, but I refuse :/ It sucks, for sure, but you have come this far in all other battles…you are more than willing! prayers.

Post # 4
2002 posts
Buzzing bee
  • Wedding: May 2016 - Sussex, UK

Are you in the US? I’m in the UK but I’ve suffered with an eye condition (not vision related) since I was 22 and went through about 15 doctors before I found someone knowledgeable and compassionate. I had one ophthalmologist write in his notes that I was “likely exaggerating my symptoms and the patient previously suffered from depression so this is of note.” I wasn’t depressed when I saw him. He was just an asshole.

Due to the forums I joined I could probably connect you to people with the same condition or knowledge on where to seek assistance. Obviously DrAtkins has some great advice there.

Hugs to you bee. It must be a very frightening time. Im so glad you have a supportive husband. X

Post # 5
3527 posts
Sugar bee
  • Wedding: June 2016

Your reaction right now is normal and healthy. You’re going to have ups and downs, and that’s ok. I don’t know what it is like to go blind, but I do know that after an adjustment period you will find happiness again. It also sounds like you’ll have some vision left, which the majority of blind people do. Regardless of what happens, you can still live a very full life. Look into resources like OM (orientation and mobility) Specialists, and therapists who have experience with coping with medical diagnoses.

There are a couple of blind Youtubers you might find inspiration from. Molly Burke and Joy Ross. Joy is older and has two daughters, I believe both of whom have her gene. Molly is younger and an inspirational speaker. Both of them lost their vision later in life (they weren’t born blind) and they both have a lot of videos you would probably find helpful.

Post # 6
1512 posts
Bumble bee

  I feel you, bee.

Today, I have alot of corneal scarring. And a bad history with my eyes. 

I spent 20 years in and out of eye trouble. I had uncorrectable vision loss at times because eye size and shape would change with inflammation.

I have an undiagnosed but troublesome autoimmune problem. I have been previously misdiagnosed, mistreated, mistrusted and treated like an idiot. 

The worse is dispensing opticians. Who mostly  think the are smarter than my actual medical doctors and opthamologists. I have been refused assistance after failing peripheral tests because my peripheral is damaged. I cannot see the little flashies. Like, at all. I have been told it must be anxiety ot that I need to buy the “special vitamins” from the glasses store. I was treated like I was faking when taking exams. 

I finally got one optician  who is attached to the opthamogists practice, he is the only person who really helped me and is so patient with my constant vision changes. 


Which means  for me  there is no cure. My vision is not guaranteed and could be gone eventually. And, my vision is constantly threatened. I can’t remember seeing perfectly, now. But I see well enough to legally drive. I rarely get ulcers any more. But I do have constant dry eyes and red eyes, and visible, irritating cysts on my sclera. 

I’ve been rushed to emerg, treated with steroids, told I have “eye herpes”.  I’ve been given special “bandage contacts”, and told I can never wear contacts. I’ve been refused fittiment for glasses when my prescription could not be accurately gauged.  I was told it must be allergies. 

I have had frozen or non-reactive pupil, due to swelling affecting my optical nerve or iris, I have been “legally blind”  and not allowed to drive as my vision was uncorrected.

I have had many times… iritis, episcleritis, scleritis. I have corneal scars. I have had as many as 6 painful ulcers at a time. I have had my corneas as tear and partially detach and leak fluid, and become infected. 

So, I feel for you. Uncertainty  is awful, and when there is no cure and nothing you can do it’s discouraging. But be mindful and positive.

I am much better now. I am always on ibuprofen therapy. I have steroids when needed only, as they cause further issues. I wear a day to night bandage lenses every day now, which has reduced my prob to like 20% of the worst. 

BUT I still  I have permanent vision loss, like no peripheral, my eyes look irritated because they are. I have a high prescription currently and it changes up and down, so needs frequent adjustment, too. 

Hugs. Sorry no answers, just alot of empathy.  Probably to my own detriment, alot of times I just gave up and wouldn’t seek treatment because nothing ever worked and I had no answers. 

Post # 7
338 posts
Helper bee
  • Wedding: August 2013

Sorry to hear about your diagnosis. That’s really tough. I have some retinal issues myself, and after an unfortunate tear last year I was unable to use my sight for over a month. It left me feeling really helpless. I couldn’t do anything for myself and frustratingly, it was almost impossible to get others in my life to understand the seriousness of my situation. For example, I called a colleague to tell them I’d be away from work and they were super supportive, but then asked me if I could put together a document for them while I was at home… I’d needed help just dialing the phone, so no… A friend took me out to lunch, handed me a menu and told me to order anything I wanted… great, except I couldn’t read the menu… All of this is to say, that I think that one of your biggest tasks over the next few years will be helping others in your life learn how to be your eyes. When you’re out with friends and family, have them start articulating the world around you. Make them get into the details. Push them to speak and discribe everything they see from the glaringly obvious to the mundane. I’d also start looking into smart technologies. When I first experienced my eye issues last year, my husband went out and bought us a google home mini. Being able to voice commands gave me a bit of control over my day and over my space and I don’t think we even scratched the surface of it’s capabilties. I’d also reach out to local vision organizations. In Canada it’s the CNIB. They’ll be able to connect you with a whole host of resources and supports as you manage this transition. Best of luck to you and your family. <3

Post # 8
384 posts
Helper bee
  • Wedding: June 2016

I’m going to second the bee who mentioned O&M training.  I would also seek out resources in your area that offer visual rehab type services, often they can come to your home and help reorient you with activities of daily living.  I’d also recommend seeing a low vision specialist as soon as you can, they can truly make a difference in helping you to remain independent and maximizing all usable vision.

I know losing vision and not having a time line is really hard, but one of the most important things is your attitude towards it all.  Take time to feel grieve but do your best to not get trapped in it and seek counseling if you need to.  I’ve seen first hand how huge having the right mind set is, as well as keeping the lines of communication open with family and friends and let them know your what you need.


Post # 13
62 posts
Worker bee

I’m sorry to hear this bee.

I work in the low vision/blindness field and I have countless stories from clients and their families and their poor experiences with neuro opthalmology. I’m sorry to hear that you had a bad experience as well.

Losing vision is very much a grieving process, please take the time to do this. 

I second alot of what some of the pp’s are saying. Low vision doctor, O&M. Get started when you are ready.

Post # 14
2002 posts
Buzzing bee
  • Wedding: May 2016 - Sussex, UK

View original reply
purplefae :  So I contacted someone on the forum I’m on for my eye issues (corneal scarring and conjunctivochalasis but my sight is ok)  and she recommended Lighthouse for the Blind and Visually Impaired. She said they had been extremely helpful. I believe they are based in San Francisco but have satellite locations They have a Facebook group too. Best wishes to you bee.

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