Primary open-angle glaucoma

[Spanieldoglover]

Hi everyone, I have just joined this group as I have very recently been diagnosed with the above and told I have a left disc haemorrhage. I have been looking on the internet, as you do, and have managed to terrify myself! I am also about to have cataracts removed from both eyes. Would love to hear from anyone with similar condition that may be able to give me some hope that this condition can be managed well and does not necessarily lead to acute vision loss. I look forward to hearing from you.

[Hidden]

Hi Spanieldoglover, welcome to the forum. I'm sorry I've no idea about disc haemorrhage but I'm sure someone will come along that will. Googling will definitely terrify you, instead look on Glaucoma UK website for information or phone the helpline and they will definitely be able to give you good advice.Open angle glaucoma usually progresses very slowly and the vast majority of people diagnosed do not lose their eyesight,although fear of this is probably the first thing that goes through your mind. It's normally managed initially by either drops or laser treatment.

I've had cataract ops on both my eyes and it is honestly a really quick, easy,pain free procedure, it's over in roughly 5 to 10 minutes. The after care involves taking antibiotic and steroid drops 4 times a day and being careful not to lift anything heavy or bend over for 4 weeks but you do get used to it pretty quickly.

I hope this helps and I'm sure you will get lots more replies.

[Spanieldoglover in reply to Hidden]

Hi Witchie346, thank you for your reply. Yes the internet is terrifying which is why I’m so pleased I found this group and plan to speak to Glaucoma UK tomorrow. I didn’t really get the chance to ask my consultant anything as it was a shock and the next time I see him will be for the first operation so was very relieved to see there was an advice line. Thank you for the information about the cataract surgery, it’s really helpful to hear your experience went so well.

[Hidden in reply to Spanieldoglover]

It is definitely a shock when you are first diagnosed and for me my brain just stopped functioning and I really couldn't think of a single thing to ask. I now write all my questions down beforehand and take them with me . I was only diagnosed 2 1/2 years but you will find lots of people on here who have had glaucoma for many years and they all still have their vision. The helpline have a buddy system where you can speak to someone who has already had a cataract op and they will answer all your questions and put your mind at rest, so that might be a good idea for you.

You will get all the advice,help and support you need on here.

[Spanieldoglover in reply to Hidden]

Thank you, it is a good idea to write down questions and really good to hear the helpline has a buddy system I’m so pleased I have somewhere to go now with all the questions going around in my head. How are you managing your diagnosis now as it hasn’t been that long either? I hope things are going well for you.

[Hidden in reply to Spanieldoglover]

I didn't know about the forum initially and only actually joined in February but I've learnt lots since then and made some great online friends. I was really upset when I was first diagnosed as it was picked up at a routine eye test by my new optician, I actually just burst into tears. Now I have a great consultant who does explain everything to me and answers all my questions and I mostly just carry on my life as normal. I do admit to being nervous prior to every appointment but apart from that I don't really think about my eyes.

[Spanieldoglover in reply to Hidden]

That’s great to hear and it’s what I’m hoping, that things will calm down and stabilise. Im glad you’ve got a good consultant. It’s so nice to hear good things about this forum and thank you so much for answering me and giving me such a good introduction. I hope to make some good online friends too. I think it’s helpful to speak to people who are going through similar experiences.

[Hidden in reply to Spanieldoglover]

I agree it is great to speak to people who are going through the same as you, it really does help. Hopefully your pressure will stabilise well and you too will be able to put Glaucoma to the back of your mind and just carry on as normal and we are always here for you x

[Spanieldoglover in reply to Hidden]

Thank you so much x

[Hidden]

Hi Spanieldoglover welcome to the group. You will meet so many lovely genuine people on here. They may not always be able to answer your questions but the support they will offer is overwhelming. I was diagnosed in December last year with open angle. So so scared still am but the support from here is amazing and I’ve made some lovely online friends who I probably moan to a bit to much. Sorry I don’t know much about what you have wrong but please please try not to google I’m the worst for it. It doesn’t help trust me. There will be someone on here who will relate to your condition. Take care kee in touch xx

[Spanieldoglover in reply to Hidden]

Hi JulieBookworm1968, thank you for taking the time to reply. It really feels good that there is a place I can go to to talk to people that understand how I am feeling. I’m glad you’ve had a lot of support from the group and let’s hope as time goes on we can both feel less afraid x

[Hidden in reply to Spanieldoglover]

I think we will feel less afraid and you will get loads of support I can promise that. X

[Spanieldoglover in reply to Hidden]

Thank you x

[Spanieldoglover]

Hi ReadHead1969, that so good that your pressure has dropped so much in such a short time. How often do you have to go for checks? I don’t even know what my pressure is, I need to find out more next time I see my consultant, it was all a bit fast as I was there for a cataract examination and then learnt I had glaucoma . He has put me on drops straight away though, so that’s good. Thank you for replying and I think you’re right, we have to remain optimistic. I’m very glad I found this group 😊

[callie77 in reply to Spanieldoglover]

Welcome SpanieldogloverYou are in the right place if you need to talk.

Everyone is so helpful. The one thing I would say is stay away from Dr. Google it only makes you worse.

It's good to know that you're not alone.

Take care x

[Spanieldoglover in reply to callie77]

Hi Callie77, yes I’ve taken note and stopped Googling but spoke to Glaucoma UK instead who were so nice and very helpful. It is good to know I’m not alone and have really appreciated the responses from everyone, thank you x

[Hidden]

Hi Spanieldoglover you've come to the right place I have open angle also and felt very lost and scared after my diagnosis but fortunately found this forum and a lot of great people who are very supportive. As long as you stick to taking your drops, keep up with your appointments and listen to your consultant's advice you should be fine ay. I would also recommend mindfulness meditation as it helped me a lot initially.

[Spanieldoglover in reply to Hidden]

Thank you sguy1823, I am so pleased I found this forum, everyone has been lovely. It sounds like things have stabilised for you so that’s good to know and I’m sure mindfulness will be helpful thanks.

[Beecalmed]

Hello and welcome to the forum. Some similarities in diagnosis to you and some differences. I was diagnosed in 2018 with primary open angle but in both eyes. At diagnosis I already had vision loss in my right eye centrally and I have some vision loss in left eye but very peripheral so less noticeable to me. Like you I also have had disc haemorrhages in my right eye. So I know exactly what you read on the google pages as I’ve googled and read them too. 😬Yep! It’s pretty scary reading. All I would say is that research is moving swiftly on glaucoma all the time. What was true last year may not be true today. Certainly you are now on your consultants radar and they will be checking and monitoring your eyes regularly. You can be sure they will do everything to stop or slow down progression of your glaucoma. Started on drops and I’m now getting SLT (select laser trabulectomy) in October. The best thing about all of this is your glaucoma has been found and it sounds like before any actual vision loss! 👏🏻 My advice is ask questions (rather than just google); write down the answers (you will have no memory of what was said in your hospital appointments)and be good about taking your drops on time as prescribed (I can recommend an app to remind you and keep track). I can’t help you on the cataract op as not had that one…yet. Welcome to our friendly little group!🙂

[Spanieldoglover in reply to Beecalmed]

Thank you so much Beecalmed I am very happy to now be part of this group. I too have it in both eyes, but I can’t have the vision field test until after my cataract operations so I’m not sure yet how much or if my vision is affected.

I’m glad you’re getting the SLT soon as it sounds like that can really help and reduce the drops. I hope it works for you.

Do you know of a good app you can recommend to help taking my drops on time that would be great, thanks?

[Beecalmed in reply to Spanieldoglover]

I use an app called EyeDropAlarm (not a very original name but it does exactly what it says on the tin 😂). Very simple app and free. The logo is a blue teardrop and small clock face if you want to identify it on App Store. The app allows you to put in the name of your drop, time of drops and number of drops till you change bottle. Then an alarm reminds you when to do drop and you tick it off as done on the list. I take 2 different drops 3 times a day. After a couple of times where I just couldn’t recall if I had done my drop or not I started using this app and it seems to have helped me keep track. 🙂

[Stairs10 in reply to Beecalmed]

Hello

Thanks for letting us know about this app. It sounds very useful.

[Spanieldoglover in reply to Beecalmed]

Hi, thanks for this I will give it a go. I’ve had one cataract done now and having the other next week so do need to make sure I don’t miss any drops 😊

[Kiara-52]

Hello Spanieldoglover. Welcome to the forum. Im sorry that you have been diagnosed with POAG. I was recently also diagnosed in July, POAG in the right eye and Ocular hypertension in the left eye. I have lost a small amount of vision in my right eye and all looks fine so far in my left eye. I am on drops to keep my pressures down. I googled too much and scared myself however from being on here I think it good to see a lot of people managing fine and living with Glaucoma, so that gives me great hope. Everyone journey is different and I wish you well on your particular journey. Now you have been diagnosed you will be looked after and reviewed. Good luck with your cataracts operations.x

[Spanieldoglover in reply to Kiara-52]

Thank you Kiara-52, it is a good forum and so reassuring to hear from people that are living with Glaucoma and as you say managing well it does give us hope. I hope all continues to go well for you too x

[Redshoes15]

Hi Spanieldoglover, I have just seen your post and thought I would add my own welcome. You will be very glad you joined! I have had POAG for 17 years, managed well on preservative free drops and had a recent trabeculectomy. All went fine and I can still see, have now lost a bit of side vision but have more than enough to lead a normal life. I am 71 now so hoping my eyes will see me out! They haven’t done too badly so far. Good luck with your cataract ops - I have that to come as I have early cataracts in both eyes. I know you will be scared but try not to worry - these eye doctors really know what they are doing and you will be well looked after. A word of advice, don’t let your appointments slip and chase them up if you don’t hear anything, as its most important that you have regular pressure checks.

[Spanieldoglover in reply to Redshoes15]

Hi Redshoes15 and thank you for your welcome. It is really reassuring to hear you have lived with this diagnosis for so long and have only lost a bit of vision. This is what is so good about this group, it certainly gives me hope that all will be okay. I will take your advice and keep on top of my appointment check ups and I hope all goes well for you too when it’s time to have your cataracts done.

[Anonoms]

The most terrifying thing actually is the lack of provision and underfunding of eye services. It means that people who worry don't get proper information from the beginning and therefore are less able to understand the ins and outs of their treatment and are mentally less well equipped to deal with the stuff they come across on the internet. Delayed appointments, dismal admin support and underfunding are actually more scary and more dangerous than the disease.

[Spanieldoglover in reply to Anonoms]

I think that’s why forums such as this are so important. I also found the Glaucoma UK helpline to be excellent.

[muddledme in reply to Spanieldoglover]

Having had Glaucoma for about 6 years I have had numerous disc bleeds in both eyes. With me they seemed to come and go frequently and I was told that they are sometimes caused by minor stresses, like coughing etc.

I usually asked anyone examining my eyes if the bleeds were still present and always try and keep a record in a notebook which accompanies me to the clinics, this has been a help over the years.

I was asked to avoid putting my head lower than my heart, although I had not done that type of excercise. I also started using two pillows at night.

My Glaucoma responded well initially to drops, but I tended to have side effects to them, so eventually had surgery to both eyes ( during Covid )which seems to have gone well.

The NHS was excellent throughout.

So pleased you are using Glaucoma Uk helpline etc and hope your cataract ops go well.

[Spanieldoglover in reply to muddledme]

Thank you muddledme. I’m just so grateful for the information and reassurance I have gained from this forum and Glaucoma UK. I really felt like I had been given the diagnosis and was just left with it not knowing quite what to do. I know my consultant was concentrating on my cataracts, but obviously it was a big shock to learn I had glaucoma too Thank you for sharing your experience with the disc bleeds and I’m glad the surgery has worked well for you.

[Spanieldoglover]

Okay thank you. It’s reassuring for you to know the drops are working.

[Sennaman]

Welcome to the forum and I am sorry you have glaucoma but you find many a good guys and gals on the site who have knowledge and understanding about glaucoma and much more and I am sure you will find lots of answers to probably questions you may have about the subject so don't be frightened to ask, there are lots of good genuine people on the forum and glaucoma uk of which I have become a member myself just recently, all the info you want can be gained by the people who are diagnosed with glaucoma and the treatments etc etc.I found the forum very positive in any of the thoughts and questions I may have also as I was diagnosed only a few weeks ago myself and now on drops to get the pressure down and both cataracts to be removed and no doubt more visits to get the eyes checked more often, your on their books now, I am sure you will be looked after now and in the future.

[Spanieldoglover in reply to Sennaman]

Thank you Sennaman. I certainly am finding this forum very helpful and friendly. I spoke to Glaucoma UK too and they were great. It sounds like you’re in a similar stage to myself with a new diagnosis and about to have both cataracts removed. Has that meant that you haven’t been able to have a vision field test yet either? They have told me I will have this once my eyes have settled after the cataract ops. As you say, at least we will now get the treatment we need to hopefully keep us from any further damage to our eyes.

[Sennaman in reply to Spanieldoglover]

Hello,I think I had all the tests at the same time and the nurse who took my eye pressure was not sure with the reading she got so took the pressure test again and then got a consultant to check it out and done more tests and then had a chat to say I got irreversible optical nerve damage and then said both cataracts to be removed as soon as,I wasn’t expecting that kind of news to be honest and he put me on drops straight away and no doubt I await the letters to arrive and go on from there and next time I see the eye doc I will ask questions as I was shocked by the news and just took the news in without really asking questions of which I should have done and since I have found out lots of information on the subject etc….everybody is different in how they react but the outcome is reassuring and the forum does help a lot

[Spanieldoglover in reply to Sennaman]

It is all a lot to take in isn’t it and it sounds as though they threw a lot at you all at once. At least now, with the help of this forum, you will be better prepared to ask the questions you need answers to at your next appointment. I hope your cataract ops go well when you have them.

[NewCardinal]

I had a disc haemorrhage around 6 years ago. Had check-ups 6 months apart and was still haemorrhaging. But it did stop because 6 months later it was ok. Hasn't done it since. I do have acute glaucoma but it hasn't resulted in any vision loss that is obvious to me. So no need to panic yet. Keep your fingers crossed it doesn't continue.

[Spanieldoglover in reply to NewCardinal]

Thank you NewCardinal.