Open Angle

Hi everyone just always melting down Listen to the zoom from glaucoma uk and that even says 10% of people go blind. I’m so down I don’t want a future. I worry for my sons. How many of you on here have open angle and had it for lots of years and still drive. I know I’ve asked this before but I’m so so scared and I’m not coping at all. I have such a happy life and family butte not going to cope losing my sight. I’m so so sorry I’m like this again

[Jennymary]

10% go blind........... 90% keep some degree of vision, I'll say no more.............

[Hidden in reply to Jennymary]

Jennymary Thankyou it’s still scary. How are you after your fall. Hope your on the mend x

[Jennymary in reply to Hidden]

I've been in rehab for just over a week, reliant on carers for washing, dressing etc, knee still painful, but after fracture clinic appt yesterday shoulder healing nicely

[Hidden in reply to Jennymary]

So glad your on the he mend

[Lynne-H in reply to Jennymary]

Get Well Soon Jenny xx

[Sunshine88888888 in reply to Jennymary]

Bless you Jenny, you are an inspiration always so positive. Hope you have friends and family around you. Sending a big hug 🤗 x

[Hidden]

Hi Julie, you have to try and relax, because I feel certain stress and worry could have a negative effect on your eyes.

I'm a veteran of many eye operations, but last year I changed my diet and dropped some weight and my eye pressures came down some 25%+ and have remained down. My eye docs are quite astonished. My advice would be to stay as healthy as you can and it'll maximise your chances. Sweat the stuff you can control and simply be mindful of the things you cannot.

In terms of diet, I went full keto after a heart attack, but a Mediterranean style diet should help. Avoid added sugars, all refined carbs, processed junk and vegetable seed oils.

I was like you at first. I was devastated when first diagnosed, but at some point you have to come to terms with it or it'll destroy your life.

I hope that offers a little bit of help.

[Hidden in reply to Hidden]

I should also add, try and get as much vitamin d (sun) as you can.

[Hidden in reply to Hidden]

Hi Hidden your message has definitely helped . I’ve currently lost 9lb so far and I’m continuing to diet. I walk for my job for 6 and half hours a day unfortunately this is indoors but I do also get out as much as I can. I hate feeling the way I do. I do the worst possible thing and google. I’m religious with my drops. Ive had SLT laser in one eye in July and the other is due the 10th September which I think why are they giving me this so soon. Do you still drive .

[Hidden in reply to Hidden]

Yes, I do still drive. I have quite a lot of optic nerve damage, but my field tests are still pretty good, and it's not obvious to me that I've lost any peripheral vision yet. I have noticed that my night vision is not as good as it was.

[mrswaffle]

I was diagnosed 14 years ago and it took a while to get the right combo of drops to stabilise the pressures. I use them properly and carefully, timing myself with a phone. I would not be at all surprised to find that many of the people who completely lose their sight DON’T do this. I have read of people forgetting to use their drops or only using them just before a hospital appointment. There are also people who (for whatever reason) don’t have regular eye tests and so the condition is not spotted until it’s too late to be treated. Don’t be disheartened, I used to feel exactly like you but I now believe you and I would be very very unlucky to completely lose our sight. Let’s not give up hope. Thinking of you.

[Hidden in reply to mrswaffle]

Hi mrswaffle thankyou for your message. If you don’t mind me asking how old were you when first diagnosed I was 53. Do you still drive. I’m definitely like you I never miss drops I’ve also had SLT laser on one eye on 27th July get the other one done on the 10th September I worry why they gave me this so soon. My highest pressures were 30 my lowest 19 I’ve done 3 visual field tests and 100% each time.

[mrswaffle in reply to Hidden]

Hi Julie, I was 57 when diagnosed and, yes, I still drive. (71 now) I am seriously considering paying to see a consultant privately, as over the years, I have been told so many different things. I have only ever attended 2 hospitals- we moved here 8 years ago. The first hospital was not good. They couldn’t get my pressures stabilised and the appointments took so long, the patients used to make jokes about it. (Northern humour). Since attending my current hospital, have seen 5 different consultants and, on 2 occasions, a nurse practitioner. I have a cataract now and the nurse practitioner and the consultant I saw a few months ago, gave me opposite views on that. Like you, I used to get terribly upset about the prospects for my sight, but since covid, I have become a lot more laidback about it all, apart from this conflicting advice situation. I wish they could all sing from the same hymn sheet. It’s supposed to be the NATIONAL Health Service, after all. The one thing that did upset me at my last and, was the prominent notice in the waiting room, advertising private treatment. In an NHS hospital. Unbelievable. I also have blepharitis and dry eyes. Who’d believe you have as many as 4 conditions over 2 small areas?

[Totthi in reply to mrswaffle]

Hi mrswaffle.You have only 4 conditions, I have 5. Cataract, glaucoma, very dry eyes, blepharitis and floaters. Very often I feel really depressed about why I have so many problems. Every time I saw my Specialist Nurse(not able to see the Consultant) I had always asked him: Will I be blind? and he had always reassured me I would be ok, but still couldn't help my anxiety.

[mrswaffle in reply to Totthi]

I do get floaters, but didn’t mention them because I don’t have them all the time, luckily. I hate seeing the specialist nurse, as they can’t answer questions. I wish I had more confidence but one consultant told me that the ophthalmology department is a low priority on the hospital’s list. I wish you the best of luck.

[Totthi in reply to mrswaffle]

Yes, i have always seen the Specialist Nurses, So I'm just about to change to the Moorfield in St Georges Hospital in Tooting. But after a quick research, I have found out that Patients may have appointments on video or telephone... I mean how could it be appointments by video or tel? patients need to be seen face to face to be examined so I do wonder, should I change the Hospital or not?

[mrswaffle in reply to Totthi]

I don’t understand how that works, either but I know that Moorfields has an excellent reputation so maybe give them a try? I know someone who moved to my town from London, but she wouldn’t change to one of the local hospitals, she carried on going to Moorfields.

[Totthi in reply to mrswaffle]

Thank you mrswaffle for your reply, much appreciated. Best wishes.

[Hidden in reply to mrswaffle]

Hi Thankyou for your message sorry for late reply. It’s amazing and encouraging to know you are dealing with all these eye problems and still drive and everything else. I’ve also seen signs in nhs hospitals about private health care as well. I also get conflicting information from consultants and that’s when the worry kicks in. X

[Positiveannie in reply to Hidden]

Hi thereI'm newly on latanaprost and regular visits etc

I can see myself in you having had anxiety and depression all my life in certain degrees

At the moment I try and focus on what's happening in the moment also any worries write down and forget till later

Then look at list later and decide what you can do about items on list

If I can't change it then have to accept this and move on

Not sure if these tips will help hope so

[Hidden in reply to Positiveannie]

Thankyou for the message. Anxiety is hard to deal with isn’t it. I will try your tips. X

[JanD236]

I was found to have high pressure in my late 30s. I’m 61 now and have been on drops for many years. I’ve also had SLT (only helped for a few months) and a successful trab in one eye.

My pressures are currently under control and I’m still driving although I had to have a DVLA test.

No idea what the future holds and I refuse to spoil today by second guessing what might go wrong with my sight tomorrow. Odds are I’ll still have useable sight for many years to come.

From the outside it seems to me that the glaucoma is less of a problem than the anxiety you have and I wonder if you are receiving help for that? I hope so. Please don’t let things that haven’t happened and may never happen ruin your otherwise happy life.

[Hidden in reply to JanD236]

Thankyou so much for a lovely message. Your so right it’s the anxiety I’m dealing with that’s making me worse. I really appreciate you writing to me xx

[Anonoms]

They are offering you SLT early beause it works better that way. It's likely to become SLT, eyedrops, surgery rather than eyedrops, SLT, surgery.

moorfieldseyecharity.org.uk...

[Longwalks3]

I was diagnosed with glaucoma in my early 40s and am now 62. Unfortunately I had quite a bit of damage to both my optic nerves by the time I realised what was going on. I have been on drops ever since (which I have been careful about taking regularly although many of them have caused me problems). Recently I have had quite a lot of surgery as my situation was becoming critical in terms of loss of visual fields. My main emotion has been anger as I feel my case was mismanaged by the eye clinic I used to attend but I do also feel anxiety about what may happen. However, Ive worked out over the years that thinking positively is the only way forward. My glaucoma is what it is, I am being treated by a good doctor and my pressures are low and stable at the moment - hallelujah! It sounds to me that your glaucoma is well controlled and its fantastic that you are having laser treatment now as this may save you years of treatment from drops. I hesitate to tell you this as I don’t want to cause you more anxiety but I have recently lost my driving licence - it does happen to some people - BUT it hasn’t been the absolute disaster I thought it would be. I have a free bus and train pass (you are entitled to this if DVLA take your licence away), friends and family have been incredibly kind and given me lifts everywhere. I know I am lucky to live within walking distance of many amenities such as shops, doctor etc and to be retired from work and that if this had happened to me earlier it would have been much more difficult. But it didn’t. I don’t know what is going to happen to me in the future but I am hoping for the best and enjoying life now as much as possible.

[Eahldt]

Like JanD236 I think you would benefit from help with your anxiety which seems to be distorting your view of glaucoma. With medication for anxiety I have a much calmer more balanced view of life in general and can keep my glaucoma in perspective. Fifteen years after diagnosis I’ve lost sight in my right eye and had lots of treatment but it doesn’t affect my life much and I’m still driving. I know people living with different conditions including cancer so I tend to see this as the one that got me. Your glaucoma seems to be being well treated but your anxiety maybe not so much so.

[Engima]

Hi Julie, as Jennymary says 90 per cent of people do not go blind. Hang on to that thought and think positively. If you can go out into the great outdoors as much as possible, walk in a wood, listen to a stream, waves on the beach (do not know where you live of course so you may not have access to all of these things). Have you thought about trying yoga, or Tai Chi - both very good for relaxation. I have had high pressure in my eyes for about 12 years now and it was only in June this year that I as diagnosed with glaucoma. Like you at first was petrified but becoming more used to the idea now and feel a lot calmer about it. Have had one catact op (left eye) and am having the other one done this Monday. So will see if that has improved the pressures at all. I don't drive and never have done so, but can understand you worrying about driving. As I said to you before I know people who have had glaucoma for 20 plus years and they still drive. Don't forget everyone on this site are always with you to help share your worries and concerns. Above all keep smiling and be positive. xx

[Bluella in reply to Engima]

Hi both Julie and Engima

First of all, I wanted to share with you Julie, that you don't have to lose your sight at all. (90%!) It may deteriorate a bit but you can be perfectly ok to lead the lifestyle you have had so far. I have a friend who is 84 and has had glaucoma since he was in his fifties. He followed strictly his doctors' instructions with drops, exercise, had trab surgery in one eye which had to be redone a few years later, and some complications along the way (ie infections) from time to time but with good advice and care always managed to overcome these. He was driving until recently (I think he can still drive) but chooses to let his wife do the driving nowadays. He can still read, watch tv, travels a lot and leads a very active life, so there is hope!

Engima - I wanted to ask you something - you said that you had high eye pressure for 12 years before you were diagnosed as having glaucoma. What is that point which changes your 'status' from no glaucoma to having glaucoma? Is it the damage to the optic nerve or something else? I have had high IOP for about 7 years - ranging from 19 to 21/22. The last test I had a month ago showed 29 and 24 but the optometrist invited me to a second reading a week later and it went down to 25 and 24. She said that now they are not refering customers to an ophthalmologist unless the IOP is 25. (it used to be 21). So I just wonder what is the basis for a glaucoma diagnosis?

Many thanks and best wishes to both of you!

Ella

[Engima in reply to Bluella]

Hi Ella, from my understanding of when high pressure changes to glaucoma is damage to the optic nerve. If I had had my cataracts removed in 2019 (was going to, but following a comedy of errors it all went pear shaped and I was removed from the waiting list) I might not have developed it. But again I could have, who knows. After getting back on the waiting list Covid came along and I was not finally seen again until June this year and by then glaucoma had struck! My pressures had gone up to 38, although they had been around that prior to 2019 and I was told I did not have glaucoma but an extra thick cornea. So how true hat all was, I do not know. Until I have had both cataract ops done, followed at some stage by a field vision test etc, will not know how badly the optic nerve has been damaged.

[Kiara-52]

Hi Julie, I hope you are feeling a bit better about things today. I totally get where your coming from (I am 52) and also don't want to be Blind in my old age. It was something that never really crossed my mind until I was diagnosed in July. In some ways I wish I could fast forward to say 20 years time and see how my eyesight is then. However thats not going to happen so I am just trying to come to terms with it and forget about it. Apart from close family I have not told my friends as in my head it make me feel old and different, however I know It wont go away and in time I will explain my condition as and when needed. I am driving and have not notified DVLA as its only in my right eye at the moment so I don't need to report it. Basically I am just acting and carrying on as normal, I do worry and stress about it in private and I think that will last a few months more till I accept it more. I also worry about my Daughter and will feel guilty if she does get it but she is young just now and hopefully the treatments will have improved if she does get it when she is older. Try not to worry take care. We will be in the 90% fingers crossed x

[Hidden in reply to Kiara-52]

Thankyou for your reply sorry it’s taken so long to get back to you. Have you got open angle. It’s so scary isn’t it xx

[Sufitzy]

Hi You are vocalising a fear we all have or have had but like the other have said it’s 90% that keep their sight . Of the 10% some will have multiple problems affecting them . Others won’t comply with the treatment . Other …. Me 😖 evidently need to take the advise on loosing weight.

Also my dad was registered blind but was reading with a magnifier and able to get around independently and he was 84 when he passed away.

I am scared some days too and it doesn’t take much to have me worried … last week everyone was helping me by messaging. But you and I will get a handle on this and we will be ok. We have this group, our clinic and we have the ability to cope with this … even if it doesn’t feel like it all the time.

We can be honest and vulnerable on this forum and next time you’ll be picking me up … just breath deep , look around and know that you are ok xxx

[Sunshine88888888]

Hi Julie, bless you how are you doing today? I’ve read all the posts, isn’t wonderful that there so many lovely people in this community who are always there when you need them! I too suffer with anxiety and at times need help, it’s taken me years to be open about it and even longer to ask for help. Just recently with my recent eye problems and two more procedures to go through next week, along with other concerns my anxiety got the better of me and I had to reach out again for help. I’ve learned to trust my hospital, they are taking care of my glaucoma and if I have a concern I know I can contact them. On the other hand anxiety is not always easy to get to the bottom of and basically it’s down to me to find a way to deal with the emotions. So I really understand Julie and really hope you feel stronger or can reach out to find ways to help you find that strength. Always here like everyone else to listen and be here for you! Sending a big hug 🤗 xx