Hello everyone I was diagnosed about 18 months ago but have just recently found this site.
I have open angled glaucoma and have been on different drops for it including lumigan which made me look like a raccoon. I finally settled on cosopt which I can tolerate but my pressures don't seem to come down much.
In January I had slt but this doesnt seem to have worked for me.
I have lost a bit of sight in my right eye and am sick with worry in case I have to have an operation.
I suffer with anxiety and get very depressed about this and never stop worrying. Have nightmares when I try to sleep.
Don't know anyone near me that has glaucoma to talk to so am hoping that someone can give me hope. Soòoo scared of going blind. I am 64
Thank you for listening.
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callie77
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Hello, welcome to our little group, I'm 58 yrs old, born with glaucoma, 4th generation in the family,
Do you know what your pressures are, or when your next hospital appt is, depending on your answers would give some indication on how well the drops are working
As I say I was born 21 August 1962, registered blind 31 October 2017, and we all understand we may end up blind, but I don't live in blackness, I have no vision in my left eye, limited vision in right eye, bring registered partially sighted or blind depends on your level of vision.
My mum lived all her 88 years with one eye working, she was a touch typist, could knit and watch TV at the same time, married almost 50 years, raised 3 children, glaucoma shouldn't get in the way of your life, just put your drops in and keep hospital appts
Hi Yes my pressures were 26 and 23 and I'm waiting for a letter to go back and see consultant.
Thank you for replying so quickly. I'm just so scared of losing my sight. I feel that my right eye is getting worse although she said my vf was the same as last time.
I'm a bit of a worried so don't know whether to believe her or not.
You are very brave. I wish I had an ounce of your courage.
Hi callie77 sprry to hear you feel like this it’s horrible news to hear. I was diagnosed in December last year I’m 53. I have open angle glaucoma. I’m like you worried sick about going blind. I’ve had 3 visual field tests and all 100% but pressures are 25 and 30 I’m on Fixapost drops one each morning. I went to the hospital last week and I’m being offered laser. Scared about it but the doctor was lovely. I’m also scared he hasn’t changed my drops but he knows best and he didn’t mention any optic nerve damage so I came away not to bad. People on here are so lovely but remember if they have sight loss doesn’t mean you will. When I posted about what I just told you I was told be careful your optic nerve will be damaged because your doctor hasn’t changed your drops I got very stressed and upset about it but then after chatting more people realised to calm down because my doctor would have done something straight away. Keep on this forum and you will chat to lovely lovely people but always go by your doctor not others stories . It’s very rare to go blind apparently now. Trish_GlaucomaUK is an amazing lady . Give her a call and keep in touch. Xx Here to chat anytime xx
Thanks for your reply Julie.Didn't sleep again last night with worry(I am a very anxious person).
It's nice to know I can talk to someone whose in the same boat as me but I only want to hear positive things really!!😀
I'm waiting to see consultant again and I'm scared they're going to say operation. I've been on a few drops before and they didn't suit me. Also had the slt but didn't work for me but I have to say there was nothing to it, and I'm a baby when it comes to medical things.
Morning callie77 ph bless you your not sleeping. It’s such a difficult one to get your head round. I seriously would give Trish_GlaucomaUK a call she was amazing to me. Are you on Facebook if you are and you want please add me it’s Julie Chetwynd I’m always willing to chat on messenger. Is glaucoma in your family or did it come out of the blue. Sadly I don’t know where mine come from as I have no parents alive. They say walking is very good a lots of green veg. By operation do you mean a trab. There are two lovely ladies on here called Hidden and Wales99 who have had this operation they are just such lovely ladies. They really helped me. It’s horrible to feel like you do but always here. Just try not to read negatives remember your gluacoma is yours and everyone is different. I’m sure if you do have to have an operation you will be fine and doctors are doing the best for you. I’m not saying I don’t think about it everyday I do but listen to the positives also lady called Sunshine8888 is just amazing. Please chat to me anytime xxx
Thanks Julie for your kind words it makes me feel less alone with this horrible thing.My glaucoma just came out the blue. My mother who is 95 has better sight than me
🙄 how does that work!!I have got a Facebook account but have never used it, maybe now is the time.
I will definitely look up the other names you gave me.
Any operation makes me feel sick but my husband says I'm jumping ahead as usual.
I do go walking with the dog but she's a bit of a nightmare to walk, always chasing anything that moves!!
Hi callie77 your not taking up my Sunday morning at all I’m having a lazy one. Your husband may be right I know laser is offered early but not trabs. If you’ve had laser and it hasn’t worked they usually try a different form of drops. It can take a while apparently to find the drops that suit you. How long ago did you have laser. Walking with the dog is good. I’m an online shopper at Sainsbury’s and my shift is 6 and half hours long apart from my tea break I’m walking the whole time. It’s not the same as outside but it’s definitely more walking than I would do a day if I didn’t have this job 😂. You don’t do Dr Google do you I was awful at that I’m getting better it’s not good. Whereabouts do you live I’m in Poole Dorset. My partner always says I’m jumping ahead of myself. He said no one knows what’s going to happen to them. Another lady I speak to she’s got closed angle glaucoma and that’s the worst to have but she asked her doctor if she would go blind and he said no but if you carry on stressing your more likely to have a heart attack. It’s just difficult I know but look at it like this twenty / thirty years ago it was not so good for glaucoma but now it can be controlled with medication and / or surgery. The lady called Sunshine8888 has had glaucoma since she was in her 50s she’s in her 70s now leading a very active life and still driving. Please speak to her and keep in touch with me message anytime I mean that. Xxx
callie77 your so welcome. Your are definitely in a special little club. I’m glad so many people have got in touch some that I forgot to mention. Enjoy your weekend. Here anytime xx
Hi callie77 and Hidden thanks for the mention! 😊. The trouble with opinions is that everyone has one 😂. Like Julie says, we are all on a different journey and all consultants will do something different. I am just over 3 weeks post trabeculectomy and all went smoothly. The consultant is pleased with how it’s progressing & I see him again tomorrow. I was only diagnosed last October, well actually it was right at the end of September I looked it up recently. I’m 56 and have a very rare form of glaucoma. It’s in my family my mum had it and various aunts and uncles and cousins have it. My consultant performed the Trab early on because my pressure wasn’t staying down with drops alone. I have some sight loss in my right eye because it was missed by my opticians. I totally understand feeling anxious, I regularly have meltdowns panicking that my eye is getting worse & I’m going blind. I read a lovely story yesterday on Glaucoma UK website by a lovely girl who is 27 and has congenital Glaucoma. She is an inspiration and says you may have Glaucoma but Glaucoma doesn’t have you. Like Jennymary says you can carry on and lead a normal life. Hang in there, we’ve got this 😊.
Hi Witchie. Yes it was a late appointment & I was drained when I got back because I’d got myself in such a state of anxiety beforehand 🙄. It’s good news. The pressure was down to 8! I thought that sounded low but he wasn’t concerned he said it was really good. I’m to stay on the steroid drops for another month but gradually reduce them & then stop and that’s when I see him again. So all good. He thinks the headaches may be due to the fact that my eye is still blurry and the other one is doing all the work which is what I thought & makes sense. He said once it all settles I will probably need new glasses which I know is common after an op. How’s things with you? X
Oh yahoo thank goodness, that all sounds positive. His explanation for your headaches sounds reasonable too. Your pressure will change and settle at the pressure it's going to stay at but that takes a wee while. I'm so happy for you, it's such a relief when you have a positive appointment.
It is exhausting and draining seeing your consultant but you can have some respite now.
My glasses prescription changed totally, I was meant to pick them up this week but covid has put paid to that as someone tested positive so they are closed for 10 days.
I'm good, I have even been sitting in the sun for a couple of hours in afternoon reading!!!! It's been far to hot to walk Lu so she's reduced to two walks a day.
Just going to take her out now before it gets to hot.
You must be having good weather- it’s certainly not too hot down south! Which suits me because I hate the heat. Yes absolutely relieved and feeling much more positive & upbeat. The pressure in my other eye which hasn’t got Glaucoma in it (hopefully it never will but it’s a possibility) is 18. At least now they are on it if I do get Glaucoma in that eye they can stop it progressing as much as it has in my right eye. It was missed by the opticians 🙄. Have a lovely walk with your lovely dog. Xx
A positive hospital appointment makes such a difference it's as if a huge weight has been lifted. I hope that your other eye never has glaucoma but worst case scenario at least it will never be allowed to progress. 18 is fine for most people and with luck for you too. Some opticians definitely have a lot to answer for that's for sure. I cannot remember the last time we had a summer like this, it's ruined my daily routine 😣. I love a routine but
My glaucoma also came out of the blue about 12 years ago. No history in my family. I've been using different sorts of drops ever since. Had a trabeculectomy in my right eye in 2015 and cataract removal 3 years later. I've just had a trabeculectomy and cataract removal in my left eye. I've lost quite a bit of sight in my right eye but still have good sight in my left which compensates. Basically I try to concentrate on what I can see and not worry too much about the future. The thought of eye surgery is, as many people on here have said, much worse than the reality.
Thank you for your kind words. Everyone has been sooo nice and welcoming. Yes I think your right in concentrating on what you can see and not to worry about the future. I just have to put that into practice which is hard when your a scaredy cat like me.Thank you
Hello Callie and welcome. I fully understand how you are feeling but let me reassure you that in the majority of cases, glaucoma sufferers don’t go blind. Like you, I have primary open angle glaucoma, diagnosed when I was 55, so a lot younger than you. I have been on drops ever since (I am now 71) and have only just had to have surgery on my right eye. My advice would be to make sure you keep your check up appointments and let the drops work for you. If one type of drop doesn’t suit you, there are plenty of others they can give you. Glaucoma is very common and let’s face it, everyone’s vision deteriorates as they get older. The treatment and care nowadays is so much more advanced. The specialists know what is right for each individual and we are all different, so relax and let them advise you.
I lost a bit of my side vision when my appointment was delayed due to COVID, but I can still see well enough to lead a normal life and I’m sure you will too.
Good luck with the laser if you decide to have it and don’t despair xx
That’s good Callie, glad I could be of help. You will never be alone on this forum so chin up, we are all here for you. By the way, I should add that despite my glaucoma I am still able to drive, ballroom dance with my husband, do nordic walking and aerobics etc. etc.!! Let us know how you get on xx
Hi Callie, welcome and so sorry to hear your worry. Big hugs. This condition can be such a lonely and worrisome one but as others have said few people lose their sight completely nowadays. I was diagnosed with closed angle 8 years ago aged 44, no family history so I’m quite the little oddball haha. I’ve managed quite well until recently when my pressures rose, I’ve been unwell with covid so not sure if that has caused havoc with my eyes. I’ve been given new drops and await next step depending on how effective they are. Everyone is different so always be guided by your healthcare team and never hesitate in checking anything you are unsure of. I visited a US glaucoma specialist years ago, very brusque man but he told me we never give up, even when a little vision remains we keep kicking it’s ass (glaucoma) and keep sight. Stay in touch, lots of help and support here, go well x
Thank you for your reply KtpinkIt's nice to know there are other people like me.
Everyone is so understanding x
Hi Calllie77 sorry to hear you are having such an awful time and are struggling with your diagnosis. Being told you have glaucoma isn't an easy thing to come to terms with initially but being on this forum and talking to others in the same situation without a doubt helps me. You will get lots of support and advice from others who really understand what you are going through.I was diagnosed 2 years ago and have had cataract ops in both eyes to open up my angles, which it did but it didn't lower my pressures enough, drops aren't either so I had a trabeculectomy in Feb. The thought of an eye operation is definitely awful but I'm a huge coward and I managed it fine.
My right eye is my worst eye and I've lost a fair bit of vision but tbh I am not remotely aware of this. I was diagnosed late due to the incompetence of the opticians I had been attending but now I have a lovely optician and a great consultant so I feel very fortunate to be receiving the treatment I am.
I am friends on here with Julie and she's helped me enormously and is just totally lovely to speak to.
Most people do not lose their vision anymore they really don't, I walk, exercise, eat a healthy vegetarian diet, don't take any caffeine, stay hydrated, don't smoke and never miss taking my eye drops and I honestly never think for a second I won't still have my vision in my old age.
I do get scared before every eye appointment but I try to lock the fear away apart from on those days and just live my life as I always have.
Hi witchie yes Julie has helped me by just listening to me. My husband is getting fed up listening!I'm trying to be more positive but I'm such a scaredy cat when it comes to medical things but everyone is so nice on here. At least I know where to come when I'm feeling low.
It is good to have someone who understands to talk to, it definitely helps. My partner gets upset if I'm negative after an appointment as he's worried about me anyway and my negativity just makes him worry more. I'm a total scaredy cat too but it's amazing how much you can actually cope with, it's much more
than you realise.
There's always someone here to offload to, you don't need to try and cope on your own.
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Ahh Hidden your so lovely your message was heartwarming hope your having a lovely weekend xx
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I am thank you . I had a lovely day out with my son n my partner yesterday and now I'm going for a walk with my friend and Lu . How's your weekend been ? X
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Ahh that’s nice. Yeah my weekend has been quite good. Seen my granddaughter on Friday and sat in the garden yesterday just chilling out. It was lovely. Today weather isn’t great we are in the process of finishing the decorating in the lounge we are currently sat on sun loungers in the lounge as new sofa isn’t arriving till the 7th of July. 😂 all I need is a cocktail. Enjoy your walk Chat soon xx
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Your weekend sounds good apart from the decorating ☺️, I just supervise I don't take part in the actual painting!!! Of course your sofa was arriving at end of month, you will appreciate it more after spending a week or so on sun loungers . We've had to sit on our garden furniture before too when we had the totally wrong sofa delivered !!! I love a cocktail but I need parasols and cherries on sticks and everything else you can think of on top 🍹x
Hi callie77 I am sorry to hear about, but fully understand your anxiety about surgery as it was very worrying for me also. Having been through it I can offer some advice (if it comes to needing surgery for you). Do your research, find out what is the best surgery for you in terms of meeting the target pressure but also for having other options long-term, eg, tube shunts can follow a trab but not vice-versa or you may be able to get away with MIGS some of which can be repeated. You are rightly worried about the future of your eyesight as any normal human being would be and I don't think this makes you a scaredey cat. It pays to have a game plan and talk it through thoroughly with your consultant rather than rushing into anything. If you decide to go this road, once you have a date, try to keep a normal routine, eg, go to work, keep up with your hobbies, activities, social visits and enjoy the moments as much as you can leading up to the date. I also found a mindfulness coach very helpful if this is in your budget, or if not a local meditation group could be the way to go. If these are not in your area an app like Calm or Smiling Mind can be a huge help if you can commit to half an hour a day to anchor yourself in the present. Look after yourself and I wish you well for your next appointment
Thank you sguy for all the information. I try to be positive but I just don't think it's in my nature. I'm such a Debbie Downer. Will see what consultant comes up withTake care
No worries, I have a lot of negative moments also but do my best to at least distract myself from the doom and gloom for as long as possible. This forum has helped a lot in a short space of time. I hope your consultant has good news. Soldier on...
Hi Callie77 Welcome to the forum, and has been said the thought of an op is far worse than the actual op, I have had a Trab, and believe me I have been constantly working on being a coward all my 70 years ! If it comes to it I am sure you will be fine, and don't forget there is someone on here who will always listen to your worries and concerns, and you will not be judged for it, as we have all been there. Wishing you the best of luck. I have the dreaded appointment this Wednesday at the eye clinic, after a month, at 8am, that means getting up at about 5.30 ! absolutely stupid o'clock, not sure I can open my eyes by 8am, lol
Hi flokiThank you for your reply everyone is so nice on here. I am working on being brave but some days are better than others! I hope everything goes well for you.
Morning Floki I hope all is good with you ? Did you get more fish for Father's Day ? I saw you had hospital tomorrow so wish you a wee good luck . How is your eye now, still blurry ?Let us know how you get on.
It's incredibly hot here, I'm having to walk Lu only twice a day, morning and evening as the afternoon is way too hot for her. My son gave me a kindle which I am reading in the garden in the afternoons,I do love an actual book though, I like the turning pages and just the feel of it.
I was meant to collect my new glasses this week but unfortunately the opticians has had to close for 10 days due to covid.
I better go and take Lu out before the temperature gets too high.
Thank you, yes eye is still a little blurry but on the whole pretty good !Daughter gave me 6 Shubunkins and son gave me 4 small Koi, by the Tuesday I think a Heron had taken 4 Shubunkins and this week had 4 more Shubunkins die found them in the pond, all the others are fine so not sure what caused them to go. And yes it has been too hot afternoons for doggy walking, although it's been raining most of the night and still is now, but very much cooler ! I have a kindle but you can't beat a proper book. Hope to go to opticians in August that will be just over 3 months since the Trab. Hope you get your glasses asap, it seems to be one thing after another with eyes lol. Take care and best wishes.
My consultant did say it takes or can take up to 3 months for eyes to settle after a trab and blurriness does seem to be the most common side effect. I hate check ups but they are a necessary evil. My glasses prescription had changed completely after operation although I actually thought my old glasses were fine.Oh that's a shame about your wee fish, my son had a Shubunkin named Silvery for 15 years, he was a whopper.
It's really hot here now so Lu is on her doggy sun lounger plus canopy having a snooze whereas i'm sitting on an uncomfortable metal garden chair !!!!
Lol, I can tell whose the boss in your house, same here !! Think my glasses will change as well for reading, the distance ones seem ok. I was of the same opinion that eyes can take up to 3 months to return to my normal, think that will be the case now. Silvery sounds like he had a good life, i know they can live 12 + years, mine will probably outlive me in that case lol ! Enjoy the sun while you can. Best wishes.
Oh Lu is definitely the boss 😃. My distance changed as well as reading and with new ones I read down to bottom line on chart whereas I was 3rd from bottom with old glasses !! Take care
Oh forgot to say I went to an old wishing tree last week or maybe the week before and I made a wish for all my friends on here, so you obviously got one. 🌳
Well all seemed ok today at my checkup, the consultant had a good look in both eyes, and said the one where i had the op was dry, which i was going to mention, so gave me some drops for that. He then asked one of the assistants to take a photo with a normal camera of my eye, so had to lift the eye lid and look down, he mentioned to her "blood", didnt hear the rest, so got to see him in 3 months, so hopefully looking good.
Hi all, hope you are all doing well, with no further problems, and hope you all have the time to enjoy the great weather, well it is in Sussex ! Take care everyone .
Hi Floki, lovely and sunny here in Scotland 🌞. I've got new specs and can even read bottom line on eye chart now 😂. All good here I've an eye appointment on 20th 😱 so will be manic on 19th but until then I'll be fine.How are things with you ?
Hi Witchie, yes all good here health wise, good news about your specs and sun in Scotland so enjoy both ! I'm sure you will have good news on the 20th as well, so fingers crossed for you.
Ha our little dog jumps on the bed to wake my wife up when she's not working, when he knows I'm going to wake her he howls and rushes in the room and jumps on her head ! We have my son round every Wednesday for dinner and he always goes home with a bag of food, after he has drunk most of my cider. I tell him he should be providing for me lol !
Your dog sounds very similar to Lu, they are so funny with their own wee personalities and quirks.😁So you are telling me son's never change then 😱. Mine did buy me ice cream and it was 2 scoops !!! That was a first.
Ganfort works best for me....Lumigan, Azarga (one to avoid!) etc didn't. Was on Ganfort for years then previous hospital changed it..for somehing cheaper! As I didn't get another check up for over a year the drops given were not working and my right eye suffered as a result! Once back on Ganfort the pressures went down and stabilised again! I had to insist on it - the Consultant's instruction to my GP Surgery!
Go back and tell them - you need them changed if not keeping pressures down. Ring and speak to the Consultant's Secretary as she may be able to get you changed onto something else if she speaks to the Consultant...it is important Ganfort works for me - but is more expensive and they will try others first...but if pressures still up a false economy!! I had SLT too - and later cataracts removed as that is known to reduce pressures - and just put drops in at bed time now. Came down from high 20's after SLT to high teens...then cataracts removed and now around 12/14 every time to date! It's the hospital which needs to change Prescription for you and let your GP know - and make an appointment for another pressure check up in a month or two.
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