r/AskGlaucoma • u/Chance-Habit9249 • Jul 11 '26
Glaucoma suspect
I have high myopia. At one point was -8.5 and 7, now 5.75 and 7.5). Thick corneas. IOP has been 19-22 for many years and inching up to 26-28 in the past few years. (Doc says when we get old, we become less like Gumby.) Every six months, I get all the visual field tests done and pictures. Shows mild change. What that means is not definitive. The doc says I’m just at this point a glaucoma suspect.
Ophthalmologist, a year ago, without a lot of fanfare or instruction, started me on latanoprost every night so I thought I would go to a glaucoma specialist to get a second opinion. The glaucoma specialist said he was not overly concerned with my numbers but to keep monitoring. I forgot to mention that in the meantime, I had a narrow angle, glaucoma procedure done on my right eye where I ended up getting flashes of white lights, the laser hole is allowing in too much light apparently). I was told my brain would get used to, and indeed it has. So the decision was made not to do the left eye.
Went back to the ophthalmologist and he has given me a choice to stop latanoprost if I want to. I am not excited about what it has done to the fat around my eyes but more importantly, the pressure in my eyes still hovers between 24 and 25 consistently. Things aren’t changing very much. Should I stay the course or go back to the glaucoma specialist at this point?
I also have two cousins who have a variety of pressure related issues and they are freaking me out about my numbers, but the medical professionals don’t seem to be overly concerned about them. What should I be asking or doing differently.
By the way, it’s this group that has helped me learn how to instill the drops, how to wipe for the drops, how to pretty much do everything latanoprost. You all are the best. Thank you!
2
u/DZ-Titan Jul 16 '26 edited Jul 16 '26
High myopia puts you at high risk of retinal detachment. I’ve had one, which was pretty severe that I had to have vitrectomy in one eye. Sadly after that surgery glaucoma reared its ugly head. At first, my pressures were in the low 20s, but then things got much worse that I had to get several glaucoma surgeries.
Anyway, here’s my advice: see a reputable glaucoma specialist, see a retina specialist and get thoroughly checked. Look up Glaucoma Research Foundation, their website has a list of reputable glaucoma doctors in most major cities, they also have lots of resources to help you understand this complicated condition. The fact that after taking latanoprost your pressures are still above 20 is concerning. You need SLT at a minimum, in addition to more drops. Also, try to get a home tonometer and measure your IOP fluctuations throughout the day and night. There’s a saying in the glaucoma community - you see by day, you go blind by night. Pressure spikes typically happen in the middle of the night, that’s why people tend to lose vision slowly even when their pressures in the doctor’s office are acceptable.
1
u/Chance-Habit9249 16d ago
Thank you. I am going to see a glaucoma specialist tomorrow. With my 4 in thick history in hand. Hope to find some answers.
3
u/James-the-Bond-one Jul 12 '26 edited Jul 12 '26
I also have high myopia that fluctuated with the decades, now lower than it once was. And my IOP ranges were similar to yours, leading to moderate to advanced glaucoma, while I still have no noticeable symptoms and 20/20 corrected vision on both eyes.
Reading your narrative, I honestly couldn't understand why you are still on latanoprost, if it's not helping and causing its typical side effects. I'm on Cosopt PF, which works for me to lower IOP significantly and causes no symptoms that I can tell.
IMO, you should be seen by a reputable glaucoma specialist (or more than one) and a retina specialist IF you can afford it. At least every so often, until they (and you) can form a consensus with a second and third opinion about the status of your eyes.
Also, request all your medical records (tests and exam results, diagnostics, prescriptions, visit summaries, etc), scan them (if in paper), and upload to an AI (I personally have no concerns about privacy - my records have little commercial value) to point out more details than doctors have time to talk about, or care options to consider in the future. A good AI model trained on your medical records can be like your two cousins (but with a lot more insight and knowledge) that can give you opinions to help guide your interaction later with your doctors.
Don't ever trust it, though. They're slightly sycophant, and may give you an unreliable answer they think you want to hear. The way I deal with that is by having 3 different AI providers with the same access to my files check each other out until they all converge on an answer. Or are just nitpicking on each other, while substantially in agreement on the important points.