Was just diagnosed with glaucoma, need support!

@maryann2 Welcome to connect .I was diagnosed in my 30,s and started on Timoptic drops for a long time then a specialist took me off since my pressures stayed within limits For a long time I didn't have to use them but in older age 60,s specialist saw my pressure was going up so put me on Latanoprest every night which I'm still on ,I'm almost 80 and pressure is maintaining so it's important to see a specialist. Hope this helps .Glad you reached out to this community .

Hi Marryanne
Sorry to hear your diagnosis. Welcome to the world of glaucoma patients.
I've been fighting it for over 30 years now. The good news is I can still eye with my right eye. I use 3 different eye drops: Cosopt, Pilocarpine, and Rocklatan which currently keep my eye pressure around 11-12. For me they don't want it over 14-15, and if it gets over that I've be looking at XenGen or Gatt surgery to insert drain to redue pressure. between eye drops and surgery options, the docs should be able to manage your glaucoma.
I'm a software engineer and have been doing software development my whole career so I highly value vision to see computer. I do have trouble with glare now, and set screen to high contrast.

Anyone else have the low pressure/normal tension version of open angle glaucoma? I am on latanoprost but find it strange to take drops when pressure is normal.

Yes, Aaron, I have low pressure glaucoma, and have been using latanoprost for several years. My pressures routinely range between 12 & 14, but the glaucoma continues to progress (very slowly) so I trust the docs know what they are doing. I am also monitored every 3 months and will continue to do it, because I have seen first-hand the devastation of losing one's eyesight completely.
Sue

Thanks Sue. I am on the six-month rotation currently. I have idiopathic neuropathy that we know responds very well to steroids which of course leaves me in a catch-22. Do I ask for steroids to control the pain and risk making the glaucoma worse, or suffer in increasing pain without the steroids? Since I am idiopathic there is zero guidance.

I have asthma, bronchiectasis and arthritis, as well as a history of mycobacteria lung infection, so I am in the same quandary with steroids. I discussed it at length with my primary, my pulmonologist and my eye doc's very knowledgeable tech.
Here is where I am at (subject to change, of course.) I use a low-dose steroid inhaler twice a day because being able to breathe trumps all other considerations. I use a steroid neb during asthma exacerbations for the same reason. I use a 2-week non-tapering course of prednisone for inflammatory flares if I am not able to control the pain with NSAIDS within 7 days. So far, this has worked for me, with less risk of reinfection of my lungs or to my vision.

My husband has neuropathy in his feet, but cannot take steroids because he is diabetic. His doc has his pain pretty well-controlled with gabapentin - have you tried it?
Sue

I didn’t get along with the gabapentin side effects and based on my job, pretty much a deal breaker. I plan on discussing what would be an appropriate dosage of methylprednisolone that could work.

I had exactly that years ago. My glaucoma specialist did laser surgery to poke a hole in the top part of my iris. Sorry, I don’t know the correct terminology and this is the best way I can describe it. As I understand it, the hole is like an “overflow” to prevent pressure from building. I’ve never had a problem with it. Pressure is always normal.

Oops, I read your post wrong. I have ACUTE angle glaucoma, not OPEN angle. I don’t know what the difference is, but I guess there is one since I don’t remember my doc mentioning an eye drop treatment.

No worries. Normal tension glaucoma might as well be called idiopathic glaucoma as they can spot the nerve damage but don’t see elevated pressure with it. Treatment is the pressure lowering drops even though not proven to do anything.