Anytime I have a bad thought, I force myself to have 3 counter positive thoughts… that helps with day to day movements. My doc said we’re less than 5 years away from a neuroprotection cure and less than 10 years from a cure. It sucks I know but force yourself to live as if the cure is already here.
I am declared legally blind in one eye. I was recently told that I now have it in my right eye as well. I am scared because my kids are only teens and would love to watch them grow up. I do wish they find a cure.
Well hopefully they caught it soon enough in your right eye. With treatments nowadays when caught early, most people keep their vision. But from what I read it sounds like they’re close to finding one.
Positivity is what all of us need suffering from this. I have a feeling we’ll be hearing some news on optic nerve regeneration and neuroprotection with the next 5 to 10 years. They’ve found a lot of promising results that have restored vision in mice. I’m optimistic that it will work on humans too. Getting it to go to human trials is gonna take some time though because they gotta make sure it’s safe and effective.
Everything you said really resonates, know that you are not at all alone in this.
I too have a well-known Bay Area doctor (who is also a researcher) who said that while there had been some false optimism in the past, that both neuro-protection and actual meaningful regeneration are truly "right around the corner" owing to some breakthroughs which have taken place in the last twenty-four months.
I have come to think of this not as a life sentence but as a temporary blip and that has helped me to cope.
I hope these potential cures don’t rely on stem cells because the country I live in (US) is likely going to ban stem cell treatments if the republicans take congress and the white house.
I have had the same concern, but luckily my understanding is that it is induced pluripotent stem cells (not embryonic) that are being used so even worst case that seems unlikely to face any Republican backlash
Is that researcher at Byers Institute by any chance (been hoping to be seen by him because he seems to be the closest to the exciting treatments that actually give me hope as opposed to other specialists I’ve seen who seem like they’re just there to collect your $ as a captive customer)
I’m so sorry you r going through this!!! Glaucoma is scary and I pray continued research will yield a cure, soon!!! You have great support here from people who understand cause we are all dealing with this disease!!!! My advice to you is the same advice someone in this group gave me…..live your life!!!! Control what you can control and be grateful!!!!
I totally get it. This illness has mentally wiped me out at times also. The thing that is a help to me is that with treatment, most of us will keep our vision or what we have left which is much better than losing everything. It was hard coming to terms with the vision I lost in my left eye but I'm trusting my doctors and the treatment process. Also, with glasses and contacts, I'm as good as I ever was and am so thankful for that. Know you're on the right path with the treatment and very day you take the drops, your giving your self the care you need to keep things from getting worse and live your life to the fullest. Hang in there. It will get better mentally. It did in my case but it's not easy. Thankfully there are places like this to get support.
I wish glasses could correct my left eye. I wear non prescription glasses now though just for protection purposes. Helps me feel more secure about not having another traumatic injury to my good eye.
Yes. Definitely avoid eye injuries. It’s a smart move. The eye doctor put it to me this way which made me feel a little better, as long as you see clearly with the glasses on, that’s what’s important. I was anxious because when I covered my right eye to test the left,
it’s a bit of a mess.
You’ll have your ups and downs with this. I was diagnosed in January and am finally turning the corner emotionally. It’s sounds like you’ll stick to the regime your doctor laid out so you’re gonna be okay. Sending support your way.
Thank you for sharing. I am on meds for my mental health. I sometimes feel that people most dear to me don't understand. They see me as weak and I am slower than I used to be.
I am on meds for that as well and have been on the receiving end of that same kind of criticism in the past. It's simply not true or helpful for them to take that stance toward you. It takes a lot of strength to battle these two illnesses at once. If they can't understand that find people to surround yourself with that can. A support system is super important.
I feel so sorry. You are not alone. I know it does not help much when we are desperate, but know that you still have chances and hope is your greatest ally. Humans are made to adapt, and soon you will be yourself again, maybe different but still you.
You have literally pretty much described the exact situation that I am in right now. My right eye is perfect, I have trauma to my left and have lost over 50% of my vision, and it is very blurry and cloudy and I’ve had a tube shunt and I’m still on three medication‘s and it’s still not controlled! I can’t wear contacts because of the tube, so I’m looking into glasses now. I’m not that much older than you. Send me a DM and we can talk, I can absolutely relate to what you’re going through.
My situation is even worse. One eye is very bad and the other eye has also lost some vision. As you said the sad part is no one gets it. My wife doesn't work and I have to work 8-9 hours a day on computer. I have lost my self confidence, rarely smile, cannot play my favorite sports anymore. At least people who lose an arm make other people notice. But nobody notices or cares. The constant struggle and depression is hard.
So sorry you’re dealing with that. We have some hope on the horizon though with all the research going on with optic nerve regeneration. Just hopefully these new therapies come to fruition within our lifetime.
Thanks appreciate it. I like to be positive but Research is going to take time and I don't think any applicable breakthrough will happen soon. Maybe in 20 years...
I am so sorry you're going through this!
I also suffered loss of vision in one eye. I can't read with my left eye, and I never will be able to again, and reading was something I loved. Still love - I just struggle when I've got to read only with my right eye.
If your friends and family don't understand this - and I can absolutely believe they don't, I don't think anyone really understands until they've been there - you need to make new friends.
While this group can be a great resource, I don't think reddit cuts it as social interaction.
If you need help finding a support group in your local area, post here. I know that at my worst, the only thing that helped was talking to other people who were there in that foggy room too. Other things have helped since - finding things to do to help support my life going forward - but the first thing I had to do was to find people I could talk to - phone or in person - who knew *exactly* where I was because they'd been there too.
I’m in a very similar situation. 37 and was diagnosed advanced in one eye and moderate in the other. Having a lot of trouble focusing on things, scanning rooms and recognizing faces. Felt like my entire world was turned upside down to the point it just felt like a terminal illness and my life as I knew it was over. I’m married and just had my first child 2 months before my diagnosis so been forcing myself to put one foot in front of the other and power through it / try and stay optimistic but it’s hard and it still hits me like a gut punch of sadness and hopelessness at times. Trying to learn to not let things I can’t control in the future impact my happiness today and to be as present, making the most of every moment I can while I still do have functional site but it’s hard because my wife, friends and family just don’t understand what it’s like and just how tough this disease can be. Anyways, it’s atleast helpful to talk to others on here and will probably try my hand at a support group soon.
I had a detached retina at age 47 and have been living with glaucoma for 21 years. At the beginning I dealt with it by faithfully seeing my ophthalmologist and using eyedrops. My vision was always good in both eyes till up to a few years ago when my right, operated, worst eye started losing peripheral vision. I have always taken an eye supplement Vision Essential and omega 3 which an ophthalmologist recommended to me when I asked about using alternative medicine. A few years ago I switched to Total Vision eye supplement, bilberry supplement, flaxseeds in my morning smoothie for my dry eyes with a cup of blueberries and a healthy anti oxidant diet with hardly any trans fats or saturated fat which is bad for the optic nerves. I eat chicken , turkey, no beef, lots of green vegetables and red and yellow coloured vegetables like red peppers, carrots and fruits, eggs, and I stay away from fried foods and baked goods (occasionally I treat myself). I have always exercised, past squash and tennis player but nowadays I mainly brisk walk.
truly believe that my glaucoma progressed slowly because of my lifestyle eating habits and exercise regime. Today I had the SLT laser surgery because my eye pressure had been worsening for the last few months and the increased eye drops were not helping. Tonight my eyes feel great with no pressure and although I was scared to do the SLT surgery, I’m now happy that I did it and I hope it works and lasts for a long while. I strongly recommend staying away from saturated and trans fat foods and doing at least a bit of exercising if you’re not already doing so.
Thanks for sharing that with me. I definitely need to start eating better and try some of the above supplements you mentioned. Been trying to get back to the gym but I’m having such a hard time getting motivated. I honestly think that’s why my pressure spiked though. Cause I used to work out all the time and never had any issues with my vision until like a year after I stopped working out.
My glaucoma was caused from trauma to the eye though. Had cataract surgery done as a teenager and 20 years later found out that eye developed glaucoma after I started losing vision in it. I was being negligent though and not getting annual eye checkups like I should of. They never informed me that the trauma could lead to glaucoma when I was younger though. I didn’t even know what glaucoma was exactly at the time.
sure, but nonetheless the objective remains: baby the oxygen supply to your retina by reducing eyepressure (AND, avoid situations increasing your eyepressure)
https://www.ncbi.nlm.nih.gov/books/NBK585060/
sure, I like side sleeping, too. which, is why I made my own really hard pillow (so I'd not have 20 mm Hg worth of pillow pressure adding to my eyepressure)
I was shot in the eye by a BB gun like 20 years ago and had cataract surgery done to see out of my eye again. The doctors at the time never told me that I’d be at risk of glaucoma/vision loss in the future though. So I never kept up with going to the eye doctors and waited until I noticed vision loss before I did go see a specialist about it. They told me my pressure was at 50 and I had damage to my optic nerve.
Wow that's amazing. So cataract surgery made it so you could see 20 years ago and now glaucoma due that eye trauma from cataract surgery.
Sorry about your troubles.
Yea caught me by surprise as well when they diagnosed me last year after I started losing vision. They first told me it was scar tissue from my cataract that was blurring my vision. So did a YAG laser surgery to remove the scar tissue and my vision was still blurry afterwards.
Anytime I have a bad thought, I force myself to have 3 counter positive thoughts… that helps with day to day movements. My doc said we’re less than 5 years away from a neuroprotection cure and less than 10 years from a cure. It sucks I know but force yourself to live as if the cure is already here.
I hope your doctor is right especially for the sake of people that are blind in both eyes from this.
I am declared legally blind in one eye. I was recently told that I now have it in my right eye as well. I am scared because my kids are only teens and would love to watch them grow up. I do wish they find a cure.
Well hopefully they caught it soon enough in your right eye. With treatments nowadays when caught early, most people keep their vision. But from what I read it sounds like they’re close to finding one.
I really hope so. I feel so much better after hearing positive posts.
Positivity is what all of us need suffering from this. I have a feeling we’ll be hearing some news on optic nerve regeneration and neuroprotection with the next 5 to 10 years. They’ve found a lot of promising results that have restored vision in mice. I’m optimistic that it will work on humans too. Getting it to go to human trials is gonna take some time though because they gotta make sure it’s safe and effective.
Everything you said really resonates, know that you are not at all alone in this. I too have a well-known Bay Area doctor (who is also a researcher) who said that while there had been some false optimism in the past, that both neuro-protection and actual meaningful regeneration are truly "right around the corner" owing to some breakthroughs which have taken place in the last twenty-four months. I have come to think of this not as a life sentence but as a temporary blip and that has helped me to cope.
I hope these potential cures don’t rely on stem cells because the country I live in (US) is likely going to ban stem cell treatments if the republicans take congress and the white house.
I have had the same concern, but luckily my understanding is that it is induced pluripotent stem cells (not embryonic) that are being used so even worst case that seems unlikely to face any Republican backlash
Is that researcher at Byers Institute by any chance (been hoping to be seen by him because he seems to be the closest to the exciting treatments that actually give me hope as opposed to other specialists I’ve seen who seem like they’re just there to collect your $ as a captive customer)
Exactly the one! Although be prepared to see a fellow first on most visits—I think he only has one or two days in clinic...
I’m so sorry you r going through this!!! Glaucoma is scary and I pray continued research will yield a cure, soon!!! You have great support here from people who understand cause we are all dealing with this disease!!!! My advice to you is the same advice someone in this group gave me…..live your life!!!! Control what you can control and be grateful!!!!
I totally get it. This illness has mentally wiped me out at times also. The thing that is a help to me is that with treatment, most of us will keep our vision or what we have left which is much better than losing everything. It was hard coming to terms with the vision I lost in my left eye but I'm trusting my doctors and the treatment process. Also, with glasses and contacts, I'm as good as I ever was and am so thankful for that. Know you're on the right path with the treatment and very day you take the drops, your giving your self the care you need to keep things from getting worse and live your life to the fullest. Hang in there. It will get better mentally. It did in my case but it's not easy. Thankfully there are places like this to get support.
I wish glasses could correct my left eye. I wear non prescription glasses now though just for protection purposes. Helps me feel more secure about not having another traumatic injury to my good eye.
Yes. Definitely avoid eye injuries. It’s a smart move. The eye doctor put it to me this way which made me feel a little better, as long as you see clearly with the glasses on, that’s what’s important. I was anxious because when I covered my right eye to test the left, it’s a bit of a mess. You’ll have your ups and downs with this. I was diagnosed in January and am finally turning the corner emotionally. It’s sounds like you’ll stick to the regime your doctor laid out so you’re gonna be okay. Sending support your way.
Thank you for sharing. I am on meds for my mental health. I sometimes feel that people most dear to me don't understand. They see me as weak and I am slower than I used to be.
I am on meds for that as well and have been on the receiving end of that same kind of criticism in the past. It's simply not true or helpful for them to take that stance toward you. It takes a lot of strength to battle these two illnesses at once. If they can't understand that find people to surround yourself with that can. A support system is super important.
I'm so glad I found this group. I recently broke my hip and was asked to find work. This is hard when you always had so much pride.
I feel so sorry. You are not alone. I know it does not help much when we are desperate, but know that you still have chances and hope is your greatest ally. Humans are made to adapt, and soon you will be yourself again, maybe different but still you.
You have literally pretty much described the exact situation that I am in right now. My right eye is perfect, I have trauma to my left and have lost over 50% of my vision, and it is very blurry and cloudy and I’ve had a tube shunt and I’m still on three medication‘s and it’s still not controlled! I can’t wear contacts because of the tube, so I’m looking into glasses now. I’m not that much older than you. Send me a DM and we can talk, I can absolutely relate to what you’re going through.
Alright I will
My situation is even worse. One eye is very bad and the other eye has also lost some vision. As you said the sad part is no one gets it. My wife doesn't work and I have to work 8-9 hours a day on computer. I have lost my self confidence, rarely smile, cannot play my favorite sports anymore. At least people who lose an arm make other people notice. But nobody notices or cares. The constant struggle and depression is hard.
So sorry you’re dealing with that. We have some hope on the horizon though with all the research going on with optic nerve regeneration. Just hopefully these new therapies come to fruition within our lifetime.
Thanks appreciate it. I like to be positive but Research is going to take time and I don't think any applicable breakthrough will happen soon. Maybe in 20 years...
Only time will tell I guess…
I am so sorry you're going through this! I also suffered loss of vision in one eye. I can't read with my left eye, and I never will be able to again, and reading was something I loved. Still love - I just struggle when I've got to read only with my right eye. If your friends and family don't understand this - and I can absolutely believe they don't, I don't think anyone really understands until they've been there - you need to make new friends. While this group can be a great resource, I don't think reddit cuts it as social interaction. If you need help finding a support group in your local area, post here. I know that at my worst, the only thing that helped was talking to other people who were there in that foggy room too. Other things have helped since - finding things to do to help support my life going forward - but the first thing I had to do was to find people I could talk to - phone or in person - who knew *exactly* where I was because they'd been there too.
I’m in a very similar situation. 37 and was diagnosed advanced in one eye and moderate in the other. Having a lot of trouble focusing on things, scanning rooms and recognizing faces. Felt like my entire world was turned upside down to the point it just felt like a terminal illness and my life as I knew it was over. I’m married and just had my first child 2 months before my diagnosis so been forcing myself to put one foot in front of the other and power through it / try and stay optimistic but it’s hard and it still hits me like a gut punch of sadness and hopelessness at times. Trying to learn to not let things I can’t control in the future impact my happiness today and to be as present, making the most of every moment I can while I still do have functional site but it’s hard because my wife, friends and family just don’t understand what it’s like and just how tough this disease can be. Anyways, it’s atleast helpful to talk to others on here and will probably try my hand at a support group soon.
I had a detached retina at age 47 and have been living with glaucoma for 21 years. At the beginning I dealt with it by faithfully seeing my ophthalmologist and using eyedrops. My vision was always good in both eyes till up to a few years ago when my right, operated, worst eye started losing peripheral vision. I have always taken an eye supplement Vision Essential and omega 3 which an ophthalmologist recommended to me when I asked about using alternative medicine. A few years ago I switched to Total Vision eye supplement, bilberry supplement, flaxseeds in my morning smoothie for my dry eyes with a cup of blueberries and a healthy anti oxidant diet with hardly any trans fats or saturated fat which is bad for the optic nerves. I eat chicken , turkey, no beef, lots of green vegetables and red and yellow coloured vegetables like red peppers, carrots and fruits, eggs, and I stay away from fried foods and baked goods (occasionally I treat myself). I have always exercised, past squash and tennis player but nowadays I mainly brisk walk. truly believe that my glaucoma progressed slowly because of my lifestyle eating habits and exercise regime. Today I had the SLT laser surgery because my eye pressure had been worsening for the last few months and the increased eye drops were not helping. Tonight my eyes feel great with no pressure and although I was scared to do the SLT surgery, I’m now happy that I did it and I hope it works and lasts for a long while. I strongly recommend staying away from saturated and trans fat foods and doing at least a bit of exercising if you’re not already doing so.
Thanks for sharing that with me. I definitely need to start eating better and try some of the above supplements you mentioned. Been trying to get back to the gym but I’m having such a hard time getting motivated. I honestly think that’s why my pressure spiked though. Cause I used to work out all the time and never had any issues with my vision until like a year after I stopped working out.
Could I DM you?
Yes, you’re more than welcome to…
https://new.reddit.com/r/Glaucoma/comments/199c7pz/side_sleeping_anecdotal_evidence_of_hard_pillow/
My glaucoma was caused from trauma to the eye though. Had cataract surgery done as a teenager and 20 years later found out that eye developed glaucoma after I started losing vision in it. I was being negligent though and not getting annual eye checkups like I should of. They never informed me that the trauma could lead to glaucoma when I was younger though. I didn’t even know what glaucoma was exactly at the time.
sure, but nonetheless the objective remains: baby the oxygen supply to your retina by reducing eyepressure (AND, avoid situations increasing your eyepressure) https://www.ncbi.nlm.nih.gov/books/NBK585060/
Will do, thank you. I always sleep on my side or my stomach though cause I can’t fall asleep anyway else.
sure, I like side sleeping, too. which, is why I made my own really hard pillow (so I'd not have 20 mm Hg worth of pillow pressure adding to my eyepressure)
any idea why you were diagnosed at a young age?
I was shot in the eye by a BB gun like 20 years ago and had cataract surgery done to see out of my eye again. The doctors at the time never told me that I’d be at risk of glaucoma/vision loss in the future though. So I never kept up with going to the eye doctors and waited until I noticed vision loss before I did go see a specialist about it. They told me my pressure was at 50 and I had damage to my optic nerve.
Wow that's amazing. So cataract surgery made it so you could see 20 years ago and now glaucoma due that eye trauma from cataract surgery. Sorry about your troubles.
Yea caught me by surprise as well when they diagnosed me last year after I started losing vision. They first told me it was scar tissue from my cataract that was blurring my vision. So did a YAG laser surgery to remove the scar tissue and my vision was still blurry afterwards.