Glaucoma at young age

[kika9]

Hi everyone, I was diagnosed with glaucoma at 21 years old. I try to stay positive and not stress about something that may not even happen but lately I find it so hard. I am just so scared what the future holds, and negative thoughts just fill up my mind. Also, the health care where I live is not the best and it is only getting worse so that adds to my worry as well. I just wanted to vent to someone that truly understands... 😔

[Stairs10]

HI Kika

Sending you calming vibes. I don't have any advice. But just wanted to say that you've been heard. Vent away !

Best wishes.

[kika9 in reply to Stairs10]

Thank you! ♥

[Astilbe]

Hi Kika, I just read your post and wanted to send you my best thoughts.

It must be very hard to be diagnosed at such a young age. A lot of people remain stable for many years provided that they use the eye drops prescribed. All I can say is to keep yourself as healthy as possible, eat proper food and try to develop a form of meditation that suits you.

I hope that you have been prescribed eye drops to control your eye pressures. Do you know what your eye pressures are?

Don't be afraid to have a moan, you have every right to, we all have to let some of it out now and then and people who haven't got glaucoma don't really understand. But everyone on here does understand.

Take care

[kika9 in reply to Astilbe]

Thank you so much ♥ I am hoping to stop or at least slown down the progress with the medication and who knows, maybe one day I will be in my 60s saying that I didn't lose any of my eyesight

I think the last time I got my IOP measured it was around 18 in both eyes and the doctor said it's stabilized

[Dally1234]

From experience of having diagnosis (traumatic glaucoma age 11) now 26, it honestly is a journey. However I personally have never felt it has held me back, however it’s different for everyone. At one point I had daily, weekly appts with lots of worry about underage medication, to now I’m very stable in pressure (15-17) with brimzolamide - however I have tried a few over the years. Stable diet, not too much salt or lots of water has helped me, but it’s all about the right meds and getting checked regularly

However sending you all the best as it’s taken me a long time to get to this point however you’ll get there I promise!

[kika9 in reply to Dally1234]

I am so sorry that you have to deal with this from such a young age. I have to say that your story motivated me that I can deal with it as well so thank you for that!

Can I ask, what do you mean by not a lots of water? I learned that you have to drink it slowly, in smaller doses throughout the day and not a lot at once, is this what you had in mind? I mean, can I still drink 2 litres of water per day, just in smaller doses right?

[Dally1234 in reply to kika9]

I’m glad that it helped! Yeah it’s more about drinking it throughout the day and reducing salt so it stops water retention. I drink between around 1.5-2 litres but when I first was diagnosed I had a eye pressure of 52 so it might have been because of that 😂

But I would ask your consultant as I’ve had different opinions from each one over the years but tbh it really doesn’t effect my life at present just being conscious of regular checks (I go every 6 months to opticians and hospital)

[kika9 in reply to Dally1234]

Thanks a lot ❤️ I am supposed to go to my glaucoma specialist in March so I will definitely ask them :))

[Redshoes15]

Bless you Kika. Everyone on here understands what it’s like living with this awful disease. All I can say is there are many treatments available and you should be able to lead a normal life, with a few slight modifications! Seek advice from the doctors, ask questions and keep yourself fit and healthy. If it’s any consolation, I have had glaucoma for nearly 20 years. I can still see and do everything I did before so don’t despair and remember you are not alone. Sending you hugs xx

[kika9 in reply to Redshoes15]

Thank you for your kind words! I found online "Questions to ask your eye doctor" that I will definitely ask in my next appointment. I just wish I would ask these questions sooner but before I was scared and plus, my glaucoma specialist is in the hospital so that makes a little bit more stresful for me.

And thanks for sharing your story, I will remember it the next time I will be sad about my situation ♥

[NewSh0e]

hi Kika, I can only echo what everyone else has said; glaucoma sucks but, as my consultant has said, if you’re fanatical about using your medication, there’s no reason for it to affect your sight.

Questions to ask your consultant when you see her/him that I wish I had asked sooner (I’m 54 and have had it for at least 12 years as that’s when it was established I already had significant progression in one eye):

1. What kind of glaucoma do you have

2. What are your “target” pressures

3. What other things can you do to slow the progression eg not lying completely flat in bed, not doing inversions if you do yoga, taking ginkgo biloba, all of which I’ve started doing recently on the advice of my consultant

It’s great that you’re being seen in March, one other thing; don’t let this pass. If you don’t have a date by, say, the start of Feb, contact the department and insist on an appointment and don’t take no for an answer. Several of us on here have seen deterioration in our condition because appointments were postponed several times during the pandemic.

Finally, there are loads of great tips on the Glaucoma UK website and YouTube channel but don’t let worrying about it take over your life.

Sending you hugs x

[kika9 in reply to NewSh0e]

Thank you for the advice! I really appreciate it! ❤️

[Jon1988]

There’s a lot of research happening at the moment looking for a cure, he’s a positive article about restoring optic nerves and potentially reversing glaucoma vision loss. There could well be a viable cure in the next decade or two.

glaucoma.org/curing-glaucom...

[kika9 in reply to Jon1988]

Thanks for sharing this article, it was really interesting and definitely gave me hope :)) ❤️

[Bellamolly60]

Hi

Don’t stress like you l was diagnosed.at 22

I am now 60.drops stabilised the condition

I have stent put in both eyes but after

35 years off drops

Hope this helps 🇺🇦🇺🇦

[kika9 in reply to Bellamolly60]

Thank you so much! You have no idea how much it helped! Now I feel hopeful again ♥