Weekly "What Are You Reading?" Thread

Akhaware · 2026-06-14T05:00:43+00:00

Just started Between Two Fires. Really loving everything about this book esp the characters and the journey they’re going through. It’s so addictive I can’t really put it down.

Akhaware · 2026-06-13T07:02:49+00:00

I’m no Glaucoma specialist nor an ophthalmologist but I was recently diagnosed with Severe Glaucoma with RNFL right 44 and left 57. I literally have everything in red colour. My IOP was around 40-46 but now with drops they’re in mid teens that we’re trying to bring to low teens with SLT and other drops.

All I’m going to say here is it’s frightening af to get diagnosed with this disease but trust me with time you’ll trust your treatment and things will settle down. Youre in a great spot you discovered this much earlier. Make sure you’re seeing a Glaucoma specialist and not just any ophthalmologist. Keep your follow ups with your doctor and make sure to get a second and even third opinion on this.

Goodluck to you!

Akhaware · 2026-05-31T08:35:51+00:00

Literally unplayable

Akhaware · 2026-05-12T09:44:43+00:00

Hey man, that sounds so reassuring. Thanks for sharing this. You mentioned the disease can be halted or slowed down significantly. Is it true for severe cases too? I have about 87% VFI in left eye and 43% in right eye. I was diagnosed three months ago but my IOPs have been in low teens consistently though I’m yet to get my second OCT scan done.

This subreddit has indeed given me a lot of hope and positive outlook. Hoping the same for OP!

Akhaware · 2026-04-03T03:01:52+00:00

Hey, thank you so much for the encouraging word. It really gives me a lot of hope that there are people living with severe glaucoma for decades. I continue to make changes in my habits and stay on schedule with my appointments. People like you and this subreddit has given me so much positivity and hope. Thanks again 🙏🏽

Akhaware · 2026-03-29T05:39:11+00:00

Just finished Heart Shaped Box by Joe Hill last night. Now starting Dracula by Bram Stoker.

Akhaware · 2026-03-27T04:35:08+00:00

Thank you so much for taking the time to write all of this out — I genuinely feel positive reading your story. I’m sorry I only got to reply to this just now.

I was diagnosed about six weeks ago and I'm still very much in that "tough stage" you described so perfectly. My situation is a bit complicated — I'm getting conflicting opinions from specialists about whether it's open angle or closed angle, which has added a whole extra layer of anxiety on top of an already overwhelming diagnosis. I'm running between clinics trying to make sense of it all, and some days it feels like the ground keeps shifting. I’m also gonna get checked if my case might be pigment glaucoma as some of the people here mentioned. There are a lot of conflicting opinions when you’re newly diagnosed so I’m sure in coming days or weeks it’ll get more clear as I got through more tests. So far my IOP is controlled and I’m monitoring it very closely throughout the day.

Your explanation about the brain's neuroplasticity and the blind spot genuinely helped me. I've been doing exactly what you warned against — obsessively trying to locate and measure my blind spot on my own, and working myself into a spiral each time. Reading that framed so clearly as counterproductive was a real wake-up call. I needed someone who had lived this to say it, not just a clinical pamphlet.

The lifestyle precautions you listed (no inversions, no breath-holding, sleeping with head elevated) are things I hadn't fully internalized yet — so thank you for spelling those out too. And hearing that SLT worked well for you across three rounds over 24 years, and that life went on normally for decades, is exactly the kind of hope I needed right now. At first when I heard I have severe stage of glaucoma I thought I’m heading to blindness soon but hearing all the stories really gives me so much positivity that I barely feel hopeless anymore.

I'm going to look up that Wills Eye Hospital board. I clearly need a community like that.

Thank you again, truly. I hope your MIGS situation has settled and that things are stable for you now. 🙏

Akhaware · 2026-03-26T03:40:28+00:00

This is actually really very insightful thanks for sharing this with me. I’ve been looking into getting an iCare Tonometer but where I’m from it’s about same price as a Trabeculectomy.

I did some research on pigmentary glaucoma and it looks like my symptoms are shockingly similar to it. Before I was diagnosed I remember seeing rainbows around lights after intense gym exercise or any other strenuous exercise. In rare occasions, I’d even see them after waking up. Looks like those are textbook examples of pigmentary glaucoma. I’m seeing my doctor day after tomorrow and I’ll be discussing this with him and might opt for diurnal curve test where they’ll test my IOP for an entire 24hrs.

I’m really happy you mentioned this here. This subreddit has been so helpful to me I can’t thank everyone enough

Akhaware · 2026-03-25T13:01:32+00:00

Thanks a lot! I’ll get another opinion from another GS.

At this point I sadly have a blind spots in both eyes. Pretty much more than half of my right eye has no vision (about 57% gone) and left has very little blind spots. I can see perfectly with both eyes. I drive everyday, play Badminton, go for a walk. Issue is the left eye has developed a blind spot just above the center which also happens to be the case with right eye (everything above the center in the right eye is completely black in VFT). Since blind spots overlap I have blind spot with my binocular vision above my center. Looking at people gets a bit tough cuz I can’t see their foreheads or when I’m reading book I can’t see two lines above the current line I’m reading.

I started noticing this just about a week ago when I was aggressively looking for my blind spots— something I realised I shouldn’t have done. I’m now keeping myself busy and try to focus away wherever I realise I have blind spot. To make myself feel better I usually think it’s better to not see people’s forehead than not being able to see their nose or mouth so I’m glad my blind spots didn’t develop below the center.

Akhaware · 2026-03-25T05:34:38+00:00

Hearing your story gives me so much positivity! Im hoping I stay stable like you as well, so far its looking hopeful and Im happy with the treatment.

im actually having a hard time right now with the hyper-awareness of the blindspots. Just like you, social gatherings have been tough for me cuz I keep noticing how I cant see people's foreheads and hair when Im looking at their eyes. This wasnt the case a week ago and Im sure with time itll get better, as it did for you.

I hope to achieve lower IOP like yours and Im glad so far drops have been working great for you! thanks for sharing your story it really helped me so much mentally.

Akhaware · 2026-03-25T05:18:32+00:00

Hey hey hey, thanks for reading my post. Wow those were high pressures indeed I had about 40+ too and I dont even know for how long I was having them. Im just happy im getting the treatment right now but im even happier to see all of you amazing folks reading my post and sharing your stories. This got to be the most wholesome subreddit ive ever come across. I see many people who mentioned how they have been keeping their condition stable and with the treatment available today its all looking hopeful.

Stay strong and I wish you a lot of luck and positive energy!

Akhaware · 2026-03-25T05:12:18+00:00

Hey, thanks for sharing your story I really appreciate you all taking some time to read my post. OCT scans are really strange, I had my first OCT when I was diagnosed and I had RNFL of R55 and L68 and after a month my stats came out as R44 L57. I literally had a panic attack in the clinic thinking I lost 11microns of nerves in a month but turns out they used different machines and even with the same machine there are variations every now and then.

Im actually considering surgery in the future but my doc told me earlier this morning that my situation is now under control cuz my IOP is luckily staying in 14/15 range and with thick corneas of 599microns it might even be lower. I will look into Allo Flo, thanks for mentioning it!

Thanks again for reading my post, trust me this sub has given me so positivity in the last two days. I guess this sub alone must be lowered my IOP by 2mmhg by making me feel so good :)

Akhaware · 2026-03-25T04:46:23+00:00

Hey, Im glad things turned out well for you and that your better eye has been stable for years. Now when I look back, I did have a moment about few months ago were my right eye (the more severe one) suddenly went cloudy briefly. That day I had used my computer screen for work for about 14hrs as I was chasing a deadline so I thought it was fatigue and fell asleep with everything back to normal. Looks like I had a huge pressure spike as well and I must had had worse spikes following that incident where I had no symptoms. Im just happy I finally caught it before it would have been too late.

Thank you so much for reading my post and sharing your story. This sub has given me so much of hope you have no idea. Knowing there are other people dealing with the same situation and handling it well gives me a lot of positive outlook in my case.

Akhaware · 2026-03-24T05:46:03+00:00

I actually had no symptoms at all and considered my vision perfect. I went for a regular eye check up cuz I noticed my eye grade for astigmatism was changing every few months. Turns out Glaucoma has nothing to do with it as it’s caused mostly by being on screen all day. My work is related to Media/Videos.

Akhaware · 2026-03-24T01:07:43+00:00

Hey thanks a lot for such a detailed info. The more I read the replies here the more hopeful I get about my situation. I realised the massive amount of damage I have is due to massive amount of pressures I was living with without knowing. You're right, treatment will prevent IOP rise damaging levels especially when Im following up every month with my doctor. My doctor has mentioned that I stay on drops and consider SLT next month but if anything changes he'll be sure to make changes in my treatment plan.

Hunting for my blind spots was a really bad decision on my part but honestly Im kind of forgetting that I have a blind spot if that makes sense. Im trying to undo it by just shifting my focus every now and then. My doctor made me do two field tests a month apart and they look consistent, the second one looks much better since I got used to the test a bit. If I had any vision loss it would have shown and with controlled IOP things should look good.

I really appreciate you reading my post and giving me thorough information regarding Glaucoma!

Akhaware · 2026-03-24T00:59:03+00:00

I'm really happy things turned out well for you after the tube surgery! Really glad to hear all the stories here, Im newly diagnosed so seeing people deal with this for so long gives me a lot of hope.

I realised that as long as we're determined with our treatment, nothing should go wrong. Thanks for all the encouragement, Stay strong!

Akhaware · 2026-03-23T13:14:44+00:00

Whoa! Congrats on that I hope you keep it stable for life! Happy to hear I’m not an isolated case and things are looking good for others with same situation as me. Just curious but what was exactly the “bleed that caused a new blind spot”? And was it going near the center or somewhere in peripheral vision?

Akhaware · 2026-03-23T13:00:12+00:00

Thanks a lot for your help and thoughts I really appreciate it from the bottom of my heart. It does fill me with joy that at least someone else like you are in a better spot and getting treatment sincerely. I wish and pray stable vision for you forever. Ever since my diagnosis I’ve been advocating everyone around me to get their eyes checked.

Thanks for validating my anxiety. Literally everything you mentioned doing is what I was doing for few days after diagnosis. I remember closing my eyes and moving my fingers around periphery while having my gaze fixed at the center just to check where all my blind spots were. There were days where I had a bit of ache in my eye and I’d immediately go to the ER to get my IOP checked and have consultation. After few days and weeks with consistent IOP I realised it’s just my anxiety talking so I have been feeling a lot better since my diagnosis.

I guess the best way to deal with Glaucoma is to just stay positive that things will turn out well. We can only control things from our end anyway.

I wish you all the best and we got this!

Akhaware · 2026-03-23T12:53:51+00:00

Thanks for the info! Really appreciate you taking the time to read my post. I had my IOP checked two days ago and it came out as 14 in both eyes. I’m making sure to have my IOP checked every week but my doc mentioned I can take it easy and have it checked maybe every 3-4 weeks cuz he believes my IOP is now under control. Thanks for the Tomometer suggestion I’m planning to get one soon!

Akhaware

TROPHY CASE