Hi all, I’m here on behalf of my partner. He was diagnosed with open angle glaucoma just before Christmas and is really struggling to come to terms with it.....to the point he’s even too scared to come on this forum for fear of reading something that will make him even more anxious. He is absolutely terrified of losing his sight and wakes up dreading each day. Sadly he has already lost a small amount of peripheral vision in his right eye as the glaucoma wasn’t picked up early enough but it has not deteriorated further since starting treatment. He takes bimatoprost once a day, he did also have SLT a couple of months ago but it didn’t seem to have much affect. He is 45 and lives a very active life, he has a very busy job in finance and loves kitesurfing, snowboarding and mountain biking. The diagnosis came as a huge shock and has left him a shell of a person at the moment. He is hugely worried he won’t be able to continue with the sports he loves. Apologies for the essay but just wanted to give a bit of background. Anyway, would love advice from your own experiences and my partner has specifically asked for advice for the following...
i also led an active life. travel, cycling, gardening, aerobics classes etc, and managed all of them while on eye drops. so it is possible.
in fact apart from the fact that twice a day my alarm would remind me to put my drops in there was no restriction on life.
keep to drops regimes, put them in properly....finger press in inner eye to keep the drops in etc.
no headstands.
i got dry eye from the use of drops ..... i was advised today to get wrap around sunglasses to protect my eyes from the wind while cycling. and i've been given lubricant drops as well.
hopefully other people on here will also be able to advise / reassure.
Sorry to read of your partner's diagnosis, but he's already using eye drops which is a positive step for him.
I was born with glaucoma, 4th generation, now aged 58, it never got in the way of me living a full, active life. Elsewhere on this forum you'll find my glaucoma history, I have lost all the vision in my left eye back in 2017, something I've always known could happen, I inherited the condition from my mum, she lived all her life with only one good eye, moral to this reply, don't let glaucoma rule your life, I didn't
The answers I'd give to your questions are
1 keep using the drops and attending hospital appointments
2 can't really answer as I've always done what I wanted
3 speak to your optician, they'll be best people to advise on that
Thank so much for your reply, really appreciated. I’m so sorry you lost the sight in one eye but love your positivity and will relay all to my partner.
I was also diagnosed in my 40’s but still enjoy going to the gym, walking and gardening. The only thing that has changed since my diagnosis (10years ago) is that my left eye lost a little more sight but nothing that is noticeable to me. Right eye has not lost any vision. And have to wear sunglasses or a hat in sunny weather, and use dry eye drops regularly.
My answers to your questions would be the same as Jennymary.
Going through a similar thing. Pigmentation dysplasia. I am 39. Had a failed SLT and now on two drops.
Also terrified about whats next with a phobia of hospitals to boot. Doing my best to remain positive. Gonna adjust my exercise regime (been previously weightlifting) and keep to my drops as instructed and hope things don't deteriate.
I’m sorry to hear about your partner, I too have recently been diagnosed with Glaucoma open angle glaucoma and it came as a huge shock. I have also lost some peripheral vision in my right eye, and already being extremely short sighted, I really panicked. I was completely consumed by it all to start with, I was very anxious, could not sleep and all I could think of was losing my sight. My first appointment was not great, the consultant was busy and didn’t have time for me. As I was struggling so much, I requested another appointment at the eye clinic, I saw a different consultant who was absolutely wonderful, she reassured me, answered all my questions and I came away feeling completely different about the whole diagnosis. My drops were changed too and now feel like my normal self. Beta blockers don’t seem to suit me. I run my own business and nothing has changed. Make sure your partner takes the drops as instructed and keeps every appointment at the eye clinic and I suggest you contact the consultant secretary with any concerns, in my experience they have been great in dealing with my queries. I also went back to my optician who also gave me reassurance and time. I hope this gives some reassurance that life is still good and you can carry on leading a good quality of life with Glaucoma. This forum is also excellent at giving help and reassurance.
I was diagnosed with Open Angle Glaucoma in my 50's and am now approaching my 70th birthday. My diagnosis was also late and I have restricted field vision in my right eye plus some other stuff. Over the past years, my diagnosis hasn't changed much at all and I recently had a DVLA driving test which was successful so I am still able to drive.
My first advice is to be strict with your medication. I use Ganfort once a day and Trusopt twice per day so I keep a tick list by my bed top make sure to keep track. My second is to have regular check-ups and be proactive. My local clinic isn't very good at sending out appointments without me contacting them to remind them so I put a reminder in my diary to contact them when my six month check-up is due.
Glaucoma UK has some good information to help and you might want to look at glaucoma.uk/product/glaucom... first as I think it will help ease your partner's fears.
There is no stigma to having Glaucoma, it isn't anyone's fault that we have it so talk about it and make sure that close relatives are aware your partner has been diagnosed so that they have regular checks. I didn't know until after I was diagnosed that it ran in my family, had I known before I might have caught it earlier.
Other than the medication regime and check-ups Glaucoma hasn't changed my life one bit. Keep smiling, happy eyes might not cure the problem but they keep it in perspective. Being diagnosed with Glaucoma doesn't change anything overnight but it is a real positive because it opens up the opportunity to keep it in check and stop your eyesight getting worse.
I was diagnosed with open angle glaucoma in my late 50s. I've lost a significant amount of sight in my right eye but still have good sight in my left which compensates. I'm 70 now and, apart from now having to take the DVLA test which I hope to pass, don't feel my life has been affected much. I would endorse everything said previously including stick to the treatment regime, attend appointments and, if you feel you're not being seen when you should, be proactive. However, whilst accepting information, treatment and advice about my condition I try to walk away, focus on what I know I can see rather than what testing tells me I can see, and get on with my life.
Thank you so much for your reply and all the tips. Very reassuring. My partner was in the same situation re it running in the family and not knowing. I think this is a big hurdle for him to get over...the what if he knew earlier so thank you for your positivity and wise words.
Hi Minety ive just read your post and it’s inspiring. I was wondering how late you were diagnosed stupid question maybe. I was only diagnosed in December last year and still trying to come to terms with it. Also the worry for my children.
Your parter has my every sympathy. I think he will eventually come to terms with having glaucoma. Let’s face it, none of us have any option about that really! I was diagnosed in my early 40s and have used drops for many years and am now having surgery as well. My top tips are:
1. Make sure you use drops that are preservative free. If you have been diagnosed in your 40s you are going to be using them for a long time and you want to make sure that you keep the condition of the surface of your eye as good as possible in case you need surgery when you are older.
2. Keep a record of your treatment so that you can refer to it in years to come. Sounds crazy I know but 20 years on its amazing what you forget and not all doctors are good at looking back through your records when making decisions about your treatment. Your hospital clinic will send you a copy of the notes from each check up. Keep them in a folder!
3. Chase up appointments - you must have your pressures checked regularly.
4. Live your life and do what you want (apart from weight lifting and headstands.) Life is short and we only have one each so get out there and enjoy the kite surfing, snowboarding and mountain biking!
Thank you so much for your reply and tips. Very positive and reassuring. My partner used to be a ball of positive energy...he just needs to find that again. Your answer to point 4. will be much appreciated by him!
Hi there. I was diagnosed with open angle glaucoma at the age of 30. I am now 55! After years of various drops I underwent trabulectomy ops on both eyes in 2013/4. In Feb this year had a second trab on right eye as first had failed. I have lost a significant amount of peripheral vision in left eye. Right eye is a little better. At the moment the only impact on my life is that I no longer drive in poor light/ at night. I have rearranged working hours to fit with this which I am very fortunate to be able to do. I have found if you speak with employers they are generally accommodating to needs. The Dvla test my vision every three years.
Speak with your optician regarding sunglasses but definitely invest in a good pair. I wear specs all the time and have reactions lenses as eyes sensitive to the light. I find these work best for me.
But really your partner will realise that they can carry in with life once the shock has sunk in.
Hi there I know how he feels, it just hits you, your body is letting you down. Especially if you are an active person, you feel like you can go on forever. You don't want to take pills or drops or fear the unknown, you feel betrayed and a 'why me syndrome'.... You don't want pity, however you do want understanding. My family were Blaise about my condition ' what's your problem just take the drops and you will be fine'. Well there is clearly no guarantee of that as the drops can deteriorate your eyes over time. I don't bother talking to them anymore about it I just use this forum.
You just don't know your outcome...Acceptance is the most difficult thing, try meditation, i had never tried it before... calm app is very good, it puts things in perspective really. We just have to be thankful for each day and realise its just something else to cope with and there is someone always worse off than you. On this site, we all have different problems and its good to share our feelings so don't be afraid to join in. I know what he means you are frightened to click on different links for fear of what you will discover. Its a horrible disease and you don't want to tell people you have glaucoma as they immediately think your going blind... especially when you have a job to do, you need to have a livelihood, life is tough enough.. So I think I know exactly where he is coming from. I was diagnosed in January its now June, it seems like a lifetime ago I felt normal. He is not the only one feeling like this that is all I can say. take care valfrance
just a tip raise your bed by 20% just put a wedge under your bed. wear light glasses to bed, (like builders glasses) not very sexy I know however if you are a side sleeper it stops your from crushing your eye balls into the pillow, this can create pressure whilst sleeping your brain is very heavy.
I use an ergo dynamic pillow and this helps me just sleep on my back most of the night raised... do not drink coffe, limit caffeine even in tea, limit alcohol do not smoke, ....supplements i take that apparantly help. magnesium, luteine, zeaxanthine, vitamine c, e, zinc, omega 3, ginko bilbao, your immune system is very important grapefruit extract also. i have no idea if this all works, if someone told me to stand on my head 3 times a day to save my sight i would do it...
Hello. I can see you have lots of lovely advice already but I didn’t want to just read and run. I just really echo what others have said.
1- He will need to be very strict in taking his drops, being too tired one night or having a stingy eye another is no excuse not to take them. Neither is being a bit tipsy!
2-never miss an appointment! Yes it’s a bit annoying with work but he will have this condition a long time and regular appointments are necessary. He must also “know his story”, when diagnosed, what drops is he taking etc
There is no magic cure for what is going on in his head and he must be thinking worst case scenario. The truth is no one can tell you how good his vision will be in years to come. I still get days where I just can’t breathe when I think about what could happen.
I try do all the right ish things for my eyes and try to lock the worry in a box from appointment to appointment otherwise you would never lead a normal life. I’ve lost a couple of friends young and I do feel lucky that I am here and I can still see!
I am 39 by the way, diagnosed at 22. I work, drive and have a child. My eyes aren’t perfect but i am so grateful I still have a good level of vision.
I hope your husband can make peace with his new way of life and can move on from feeling lost. Glaucoma shouldn’t control your day to day life.
First of all he should be brave to come and meet us all here! Thank you for caring for him...👏Good morning from Thailand... please tell him there is nothing to worry about as long as the IOP is controlled.Like mentioned here do the punctual occlusion correctly,
I don't know about specifics of vigorous exercise but I remember posting about exercises...Tell him to accept what he has, befriend with it ,it is not the end, one doesn't loose eye sight over night!Open Angle is a beginning.... wander why it was picked up sooner?.....did he have regular Eye examination? ...Tell him I had a Glaucoma attack and was Hospitalised for 3 days,then finally Open Angle was diagnosed, later on to Angle closure.(Laser Iridotomy done also)....I survived all these and I am 69 and smiling as I write this.....and I speak from within to the eyes.... Just carry on and enjoy life as normal......Tell him the exercises he is doing are great!I am sharing about myself so he can begin to smile again and live as normal as he did before with you.......It is definitely possible!Be sure about this ....
Hi , I think everyone has given great advice already but just joining in to say, I completely understand what a shock getting a diagnosis is. I am 57 and was referred to the hospital in February and went to the eye clinic in April of this year!! So it is still new, I am having to process it all, going from someone rarely unwell to having something that I do need to think about every day (remembering to put the drops in etc). I have up and down days. I am currently on a waiting list for some CBT therapy (to help with processing this and other things that are increasing anxiety and low mood).Send best wishes and I hope he keeps doing all the things that he enjoys, as everyone has said your life doesn't have to stop with Glaucoma. My new joy is learning to ice skate!
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