Really scared now

I’m so so scared right now. I have cupping of 0.7 and 0.8. I’ve googled this and it’s really high. I know I’m going to go blind.

[Jennymary]

Did you get the details from a letter following your recent appt, if you did,, if I remember currectly, you're not going to be seen for a, couple of months, so doctor you saw isn't concerned so I wouldn't worry either, you'll only end up making yourself il, iived 53 yes before I was registered blind and I've still got vision in one eye

[Hidden in reply to Jennymary]

Thankyou yes I did receive this in a letter. Been googling way to much as well. J oh really don’t know how to cope

[Jennymary in reply to Hidden]

You need to stop using Dr Google, let's hope that with lockdown restrictions easing over the next few weeks you can get out more and forget about eye problems for a while

[Hidden in reply to Jennymary]

I really hope so it just says on google that that cupping is high x

[Jennymary]

Don't know if you read my post about being registered blind, if you have, thank you, if you haven't have a read, you'll see that for anyone being registered blind it's not the end of the world

[Hidden in reply to Jennymary]

Yes I did read it. Did scare me but also Amazon’s me to if that makes sense

[Hidden]

Hi Julie I don't know anything about disc cupping apart from it is one of criteria they use to diagnose glaucoma but I can totally empathise with feeling scared.You were only diagnosed a few months ago out of the blue and that takes time to process. You actually coming on forum and saying you are scared is so much better than keeping it all bottled up inside. We all have our own ways of coping and eventually I guess accepting and adapting to our glaucoma diagnosis. You will get there in your own time but it doesn't happen overnight and for me talking definitely helps.

Google can definitely add to our fears ,though the temptation to do it is always there but I don't think it gives a very balanced view ,which will just add to your fears.

You see your consultant relatively soon so have all your questions ready and hopefully his answers will help to allay some of your fears. Once he has your pressures down and stable you will be able to relax a little but you haven't got there yet.

Always happy to talk x

[Hidden in reply to Hidden]

Thankyou I’ve been googling all morning not good. Then it says those numbers are high then I get told it can be normal with bigger disc I’ve got to stop it’s killing me. How are you today x

[Hidden in reply to Hidden]

Your consultant is the best person to tell you if a bigger disc is part of your physiology, the same with a thin optic nerve. Google doesn't give you any perspectiveJust try your best not to Google anymore and not immediately think the worst if you do give in and Google . Both easier said than done I know.

Being told you have glaucoma is a complete emotional roller coaster.

I am fine today, weather is awful wet and very windy but I've already ventured out with my dog .

I am now busy cleaning the house and then I will go for a longer afternoon walk with dog and friend.

Take care x

[Hidden in reply to Hidden]

Ahh Thankyou again. It just consumes me all day. Weather here in Bournemouth is grey but not raining. Went out for a long walk yesterday apparently walking is good for gluacoma my job also involves walking. Glad you have managed to get out. I’m just going to chill now and watch a bit of tv up for work at 1am. Enjoy the rest of your weekend chat soon take care

[Onthemove1971]

So sorry you are scared. Will you be getting help with learning skills:special software for computer to make it bigger bump dots for kitchen, using audio books, etc. All these and more help reduce eye strain and make it easier. I am glad you found this group so you. An connect with other people with Glaucoma. Good luck.

[Hidden in reply to Onthemove1971]

Do I need all this because of optic nerve

[Onthemove1971 in reply to Hidden]

Any time you can decrease eye strain it would be helpful.. Start now while you have vision, it will really help. Good luck.

[Hidden in reply to Onthemove1971]

I hoping I will always have vision but Thankyou

[Onthemove1971 in reply to Hidden]

Yes, but if you learn some basic techniques it will decrease the amount you use your vision. Good luck!

[Hidden]

The cupping is because your nerve is thinning, it is not independent of the thinning nerve. As the nerve fibres die the cup to disc ratio increases. You say that your visual fields are fine, therefore the damage to the nerve isn’t bad enough for you to develop any defects. Many people already have field defects when they are diagnosed so it is likely they have a worse nerve than you. I’m not sure why you are worrying about going blind, once your pressures are under control hopefully you won’t lose any vision and any you do is likely to be very slow. I’m not sure it’s helpful for you to be on this forum, a lot of people on here are those who want to discuss surgery and those with low vision and that’s going to cause you more anxiety. There are around 500 members on here, that’s 0.001% of those with glaucoma in the UK, most people just get on with their lives and don’t worry about it. There are some great videos on the Specsavers website and a really good website with a great surgeon who explains everything really well. hopkinsmedicine.org/wilmer/....

[Hidden in reply to Hidden]

Thankyou so much for that kind message. It’s really helpful. Xx

[booktwo in reply to Hidden]

Thanks for posting link. As you say extremely informative and helpful

[Sunshine8888]

Hi JulieBookworm just seen your post, bless you. I still remember being diagnosed twenty years ago and the absolute fear that I was going to go blind and in my head, that was going to be immediately. I had laser treatment to both eyes on the day of diagnosis and yes my pressures do go up and down however twenty years on my worst fears haven’t come to fruition! Please do use this site, I have only recently found this community and it has helped me so much! I looked at the Glaucoma U.K. booklet which gives you possibly questions to ask your consultant and I did just that! Wow really felt like I was taking control, I never asked questions before basically because I didn’t know what I should be asking about! In the last month I’ve had to have an emergency appointment, different eye drops which I had a bad response to, so new eye drops this week and another appointment coming up. The eye hospital has phoned twice a week to see how I am doing. The support has been amazing, so have questions ready, talk to your consultant, share your fears, I did as I said it was the first time of doing so on my last appointment and they were there for me! As others have said come on to this site, we are all here to support each other at whatever stage we are at! Take care x

[Hidden in reply to Sunshine8888]

Thankyou so much. Do you have open angle I can’t remember sorry. Your message is an inspiration to me and I’m so grateful. I’m worried about the disc cupping to much google I think. How are you now with drops hope everything is fine. Did you say you still drive. When were you diagnosed sorry probably asked you all this. Apologies x

[Sunshine8888]

Hi JulieBookworm, it’s no problem at all! I initially had primary angle closure however with laser it’s now open, that’s what I was told. I’ve had several different drop regimes over the years and about to start another this week. I know they must be preservative free! I drive, look after three grandsons, travel in fact I do anything and everything in life! Golden rules, have your eyes checked, ask questions, take your eye drops and just live life to the full! Easy to say especially in the first stages, as your thoughts are so much in the future. Xx

[Hidden in reply to Sunshine8888]

Thankyou for replying again. That’s truly amazing and I’m guessing open angle is better to have I’ve been told if that’s the right words. I’m 53 how old were you when diagnosed if you don’t mind me asking. Wow 3 grandsons how lovely xx

[Hidden in reply to Hidden]

I second everything that Sunshine has just said, if you find being on this site offers you support and helps with your fear there is no reason not to continue to be part of it. You are recently diagnosed and you are allowed to be scared and worried about the future as it's early days for you. You too will find a way of coping and you will carry on hopefully with glaucoma in the back of your mind instead of in the front where it is at moment.

As Sunshine says ask questions at your next appointment and your consultant will be the one to give you the answers you need.

You do whatever you need to do help with your fears.

Take care x

[Hidden in reply to Hidden]

Thankyou you are always here with lovely positive messages xx

[Lovemy2woofs]

I’m going through the same emotions Julie, can empathise ., I too find myself googling etc...that’s natural as it’s such a shock . Not been sleeping great etc...as always on my mind. I’m a narrow angle suspect, so until I go to my 1st appointment next month for the initial screening, I don’t know , plus I’m diabetic so have to be screened fir retinopathy another thing that causes blindness .

My biggest fear is going blind , out of all the diabetic complications we get told about , blindness was the one I feared the most.

Never gave Glaucoma a thought , as you go along to your opticians thinking more about your prescription glasses .

Some people can cope well with diagnosis , others struggle we are all different .

I don’t think with Covid it is helping matters , it has made me much more anxious about health matters as we all know about delays and waiting lists .

Stay on here as I think just offloading and chatting really helps.

No one understands Glaucoma better than those having it too.

I’m 56 , so in my 50s like you.

Take care x

[Hidden in reply to Lovemy2woofs]

Sorry I’ve took so long to reply Thankyou for the lovely message you seem to be going through a lot at the moment hopefully after your appointment you will feel less anxious but I know how your feeling at least we can all be here for each other. Take care and keep in touch xx

[Hidden]

Thankyou it’s all very interesting. Do you have gluacoma how long for do you drive what age were you diagnosed sorry questions

[Hidden]

Thankyou for your message. I don’t wear contacts but do drive and plan to keep that as long as I can. I’m only 53 and work full time. I’m on Fixapost once in the morning hopefully pressure will have gone down by then x

[Wales99]

Oh Hidden you remind me so much of myself. Maybe it’s something in the name - I am also Julie. I regularly have melt downs & panic attacks thinking my eye has got worse/ I’m going blind. I will never see my daughter in her wedding dress or any grandchildren I may have. Luckily my husband is very laid back and calms me down. I wake up regularly in the night & sit upright to check I can still see. It’s causing me so much anxiety I’m not eating or sleeping. The only good thing is that I’ve lost some weight 😂. I was diagnosed right at the end of September last year. I’m due to have a Trabeculectomy in June which I’m not looking forward to but the drops just aren’t keeping the pressure down. Hope you have some support & you are starting to come to terms with it all. Hang in there. We got this. 😊

[Hidden in reply to Wales99]

Hi sorry I’ve only just got back to you. I’m so so scared like yourself. I’m convinced I’m going blind also worry my children will get it. Have you got open angle. How come your having a trab so quickly I bet you are scared. Is it because pressures won’t go down. Do you still drive and work. I fear the future xx

[Wales99]

Hi Julie. So sorry I thought I’d replied to you a while ago but it doesn’t seem to have gone through. Technology 🙄. Yes my consultant has managed to halve the pressure 44 down to 22 but wants it lower. He doesn’t think laser surgery will last long as I’m only 56. I’m so lucky I have a very rare form of Glaucoma- mixed mechanism in that I have both open and closed angle- lucky me 😂. Yep still driving although haven’t driven for ages because we haven’t been able to go anywhere! Yes I’m still working, three days a week on a computer all day. I only have it in one eye but my vision isn’t great in that eye. I have some Vision loss although my visual fields are very good apparently. The vision loss is more central. As I say I think my vision has got worse lately but not sure if that’s me panicking or the drugs that I’m on which can cause blurred vision. Hope you’re feeling a bit better now. X

[Reeses_326]

I have cupping of 0.75 in both eyes. I was diagnosed when I was 21 and I’m now 31 and my cupping size hasn’t changed. I was told I have glaucoma and others just said I have physiological cupping.. aka I was born that way… I still have a full field of vision! My eyes do get really red they always have been red… ever since I was like 15. I’m scared to to be honest… im on drops now … they suck Bcs side effects…

There’s really not much we can do to be honest.. it sucks… im just grateful can see today but I’m scared too! I might go see a therapist for my anxiety about it.