I am a registered ophthalmic nurse and am Glaucoma UK’s helpline manager. Although I haven't worked in the hospital setting for six years, I still perform visual field tests for a local hospital. I also attend conferences and continually update myself on all aspects of glaucoma, including treatments, innovations and research.
From speaking to people on the helpline, I understand the concerns and worries of people with glaucoma and the information you might need and I am keen to help anyone requiring advice. Sometimes people just want to talk about their glaucoma with someone and we are more than happy to do this.
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Helen_GlaucomaUK
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Hi Helen, I might be a bit in advance here as I had an appointment with my optician yesterday, mainly because I have PMR and still on fairly high dose Pred. and I want to keep an eye (no pun intended) on any possible consequences for my sight. However no great change on eyes but she has detected the first possible signs of glaucoma and is referring me upwards to the eye specialists at one of our hospitals.
Hi Bcol. Firstly, how sensible of you to go for an eye health check at the optician's. I'm not saying you have glaucoma because until they have done the tests on your eyes, they won't know but be reassured the earlier it is picked up the easier it is to treat and with a better outcome. Yes, long term steroids can be a factor in the development of glaucoma but to do without steroids with PMR could have been very painful and restrictive joint wise for you.
Do have a look at our Glaucoma Clinic Referral booklet on our website as this explains all the different tests you will be having, once you get your appointment at the hospital. The more you know, the more questions it will prompt for you. Again, it doesn't mean you have glaucoma but any suspicious signs should be investigated.
If you have any specific questions, please do not hesitate to ask, either here on the forum or our Helpline.
Hi Helen am a young men from Nigeria I had glaucoma since 6years now am about to reach 27years old out of twi eye one has blind please have been to hospital here in Nigeria there eye still remain blind please I need help
I am very sorry to hear that you are now blind in one eye due to glaucoma. Sadly, any vision lost to glaucoma cannot be restored and this should have been explained to you by your doctor. It is so important that you look after your other eye. If you are having eye drops make sure you don't forget to put them in. Always attend your hospital appointments. Your doctor will of course realise how vital it is to keep the vision in the other eye and will be doing their very best.
Hi Helen, I have glaucoma and cataracts. The cataracts are not too advanced, so haven't had surgery for them yet. My pressure is being kept down ok with eye drops (Latanoprost 50 micrograms/Timolol 5mg) but I'm having problems with glare from bright sunshine when driving. I have spectacles which darken with bright light, but they don't work behind a windscreen. Is there anything you can suggest which might help please? (It doesn't help that my pupils contract very slowly to bright light, a genetic thing)
Hi there. The trouble at this time of year of course is that the sun is that much lower in the sky and earlier in the day which doesn't help. Quite a few people with glaucoma complain about glare. There are over the glasses shades available and people I have spoken to, often comment that the amber coloured ones have helped. You can find these on the internet at different prices. They naturally don't have any prescription in the lenses as they are to be worn over your own glasses. Naturally be wary who you buy from and always read the reviews. Amazon do some at a decent price. Also take into account that your own glasses darken and whether another shade will make it too dark for you.
Hi I’ve recently been diagnosed and am petrified of going blind. I’ve been given lantanprost and passed the vision field test and can read down 20/20 and 2025/ on the chart I’m so worried I didn’t get told my eye pressure if the doctor was really concerned that day would he have sent me away for 3 months. I just know I’ll be blind next year. Sorry I’m scared x
Hi Julie. From what you have said in your post please be reassured that it appears that your glaucoma has been detected early. The reason they have asked you to return in 3 months time is to give the Latanoprost time to take effect and lower the pressure in your eyes. It is so important that you don't forget to put your drops in daily and attend all your eye clinic appointments. There are different types of glaucoma, so if you haven't been told already, I would ask when you next go.I understand your fear and anxiety but pleased be reassured that there is so much more treatment available for glaucoma now. Going blind due to glaucoma is rare and sadly due to people not having an eye health check at the Optician's, so it doesn't get discovered and vision gradually gets lost. This is not the case for you, as your glaucoma has been diagnosed and treatment started.
You can now take a deep breath and relax and enjoy Christmas (as much as we are able to this year with Covid 19!) There are many, many people living with glaucoma without sight loss. Glaucoma isn't another word for blindness. Your feelings are perfectly normal, when first told and our minds go into hyperdrive. I hope I have reassured you and that your anxiety level is calmer.
If you want to learn a little more about glaucoma in the future, do have a look at our leaflets on our web page. If you want to speak to someone on our Helpline now or in the future, we are there for you.
Thankyou so much for your kind kind message. I have and still am worried but I have had so much support on her and lovely chats with Trish on the phone. I can’t thank you all enough xx
Hi Helen....I recently had a Closed angle Glaucoma attack in my sleep...I woke up to see black in my left eye...that was two months ago, I'm still getting pain in that eye and pressure headaches in my temple and ver my ear...strangely my periferal vision in the eye is fine but I now have a smudge in my centre vision which prevents me from reading text with that eye...the right can still read text so is doing all the work...I live in Spain so all the doctors/ophthalmologists are Spanish...they have told me it's advanced glaucoma and I'm now on Latanoprost late evening, Azargar and Alphagan... twice a day...so what is the long term outlook for this advanced stage...understandably I'm very concerned about my future life ahead and the implications on my family....I'm 63 and generally fit, now living with a chronic illness is taking its toll....please give me some positive assurance if you can...thank you.
Hello Noelhoney. Firstly, sorry to hear that the closed angle glaucoma attack happened during the night. By being asleep, you would have been totally unaware of it. It must have been very frightening to wake up with your vision loss in your left eye. It's now all about keeping the vision you have and to help do this you must never forget to put your eye drops in and to attend all your hospital appointments. No one can unfortunately predict the future but with the technology, various glaucoma treatments, new treatments and ongoing research, there is always hope. Eye drops aren't the only treatment available, so there is back up if needed.Try not to think of the worst as you have vision and intend to hold onto it. Peripheral vision is just as important and your right eye is still allowing you to read. Of course you will have good and bad days but don't let this stop you doing what you want. Gradually, you will adapt and live your life and not let the glaucoma take over. You were lucky in many ways, that the darkness you woke up with in your left eye, didn't remain completely.
Don't forget too, that we are here for you and if it is someone you want to speak to, just call our Helpline. You are not alone with this.
Just to add that it would be an idea to inform your ophthalmologist about your eye pain and pressure headaches. Could it be one of the eye drops causing it perhaps? Worth having this checked.
Thank you Helen, your message has given me hope, my zest for life has taken a knock, my days are completely overwhelmed now with my condition and panic about the future and the visual disturbance I see reminds me constantly about the life I have ahead of me...I only hope this will pass, walking out in the daylight heightens the poor vision in my left eye so I'm not going out too much now...every day seems like a week..as you say, this will all pass.....but at the moment it's taken over my life !
Hi Helen, I have just joined the group. I had been told I have angle closure glaucoma in Jan 2019. I had laser Iridotomy four times. They keep an eye on me throughout the year of 2019, i.e. I paid several visits to hospital! Yes, it goes without saying, both my parents have issues with their eyes, my dad has glaucoma. In Feb 2020, an eye doctor said my angle are still narrow (different eye doctor each visit). In March 2020, I had laser Iridoplasty. With COVID and everything, my follow up appointment was delayed. I last went to hospital for follow up appointment in Aug 2020. The doctor said my angle is open, my vision field test is very good, but he asked to go to hospital if I had headache, nausea or loss of vision. My next follow up appointment will be in April 2021. So what's next for me (consultant did say if Iridoplasty doesn't work, I will have to go through surgery). Will I suddenly go blind from one day to the next? I recently went to optician who said that my angle is still narrow but her supervisor commented it would still be narrow even after laser. I don't need to wear glasses or lenses at the moment. I have been told I have Blepharitis. Optician advised cleaning routine. Is there anything I need to be worried about or need to be aware of? I don't drive at the moment but I plan to take driving lessons in near future. Should I be driving?
Hi Mel. It is unlikely that you would suddenly go blind. Thought I would get that out of the way to begin with. They have just made sure that you are aware to get yourself seen quickly at the hospital if you experience any of the particular symptoms you mentioned. It doesn't mean it will definitely happen, but at least you are aware. You have been told slightly different conflicting information but perhaps part of the 360 degree angle is open and some of it narrow. It would be hard for me to say. Because your field of vision test was very good, there is probably no reason not to learn to drive. Your ophthalmologist should be able to tell you if they think it is okay. There are many many people with glaucoma who drive. If you have glaucoma in both eyes, you do have to inform the DVLA and you may need to do this when applying for your provisional licence. This is so they can send you for a Driving visual field test. This is to cover them and you. Everyone who has glaucoma in both eyes has this test performed, so you are not being singled out.
Do the cleaning routine which the Optometrist advised for your blepharitis twice a day, as this keeps it under control and helps stop any eye lid irritation. Unfortunately, blepharitis is very common and the cleaning routine monotonous, however the results are worth it.
Hi All. I am currently on furlough in a carer's role but I do try to get a little time to check your messages. Unfortunately it's not necessarily on a daily basis and I can only apologise for this. I am unavailable from the week commencing 14th until the 20th December and also for the Christmas period from 24th to the 4th January 2021 when I will still be on furlough. I will update this message as soon as I am back to work full time. In the meantime continue sending messages to each other and to us at Glaucoma UK.
Hi Helen just wanted to say thank you again for your fantastic support! Talking through my forthcoming cataract operation with you answered so many of my questions and really made me feel far more confident. Can’t tell what a difference it has made to me! Thank you again, it means so much to know there is someone at the end of the line you can talk too! x
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