I’ve recently been diagnosed with glaucoma and I am terrified of going blind. It has come as a complete shock. Can anyone help to allay my fears please.
Goldilocks : I’ve recently been diagnosed with... - Glaucoma UK
Goldilocks
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Goldilocks64
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How advanced is your glaucoma? If you stick to your eye drops routine it should hopefully control your eye pressure. If eye drops aren’t working there are different surgery options to help slow down your glaucoma. I know when I was first diagnosed I was upset and worried I’d go blind too.
Hi there. I was at routine eye appointment at Specsavers and the scan showed a hemorrhage at the back of the eye. This was during the Covid pandemic so trying to get an appointment at the eye hospital was near impossible. Eventually after many phone calls and much stress I did eventually get an appointment. It was confirmed I had glaucoma. Pressure was 24 in both eyes. Numerous eye drops over a year did not bring this down. Had laser and my pressures can down to 19. I was not prepared with questions to ask unfortunately just scared about the whole situation. I wasn’t given any information or advice just eye drops at night. Sorry for the drawn out information. Thanks for your response.
I agree I think worry and fear are all part of the Glaucoma blight!!
Eyes are precious especially your own! & when theres a problem like that only yourself carries the burden 24/7. Alot of people on here feel same so cant be just ourselves.
I am still pre glaucoma but been on Monopost for 6 wk(pressure 24) prior to having slt on Monday-which i was so scared about. All seemed ok but now my right eye is acheing & im bit concerned. Took me over an hour on phone yesterday to get Consultant follow up 31 May. I was told to stop drops after procedure but you do worry about pressures etc &6 wk wait is long time!
My mum had glaucoma but didnt go blind and my cousin on dads side has had many years & at 74 think he still drives. We're all different I know but not everyone goes blind.
All you can do is keep up with treatment & this website is genuinely helpful. No good saying dont worry cos if like me you probably will!!
The NHS now is terrible & when youre ill etc you feel vulnerable.
Thoughts with you.
Hi Goldilocks64!
Are you new to the forum? If so welcome! We are a very supportive bunch, so you are not alone. 🙂
Your reaction is one that many of us have had at diagnosis and on your those first steps along the (sometimes bumpy) glaucoma pathway. For most of us the anxiety does lessen a bit over time, although obviously you never forget about your glaucoma. And if you have to take daily eye drops it’s important you don’t forget your glaucoma, so you never miss taking them.
May I ask what type of glaucoma you have been diagnosed with? Was your haemorrhage a retinal bleed or another type of bleed? Have you lost any vision or have they caught it early? It may make our responses more relevant to your situation. We all have glaucoma but all have slightly different diagnosis that modifies our individual treatment and outlook. 👍🏻
thank you for your response. I have open angle glaucoma. I was not informed, and I didn’t ask, about what caused the bleed or type. I don’t have any vision loss but constantly check. I’m out of my mind with worrying and it’s consuming me. I hate the person I am becoming.
Hello Goldilocks64, I believe the vast majority of people with Glaucoma don't go blind at all. Just be sure to take your drops as prescribed, and you have a great chance of this being no more than a minor irritation in your life.
I was diagnosed with regular pressure Glaucoma a year ago after an eye test, where I had 15% vision loss already in my left eye. I take Monopost drops every night, and apart from that I don't really think about Glaucoma at all. Maybe when I want to take some other medicine and just have to check the patient information leaflet to make sure it's OK for me to take. But if you've no vision loss, and it sounds like your pressures have responded well to laser, I think you can give yourself a break from the worry, sounds like it's all going OK.
If the worry is really taking over, might be worth talking to your GP about whether you can take something to help with anxiety? No shame in that at all, it's better than feeling terrible the whole time.
All the best.
Just came back to add - I notice this online support group coming up, might be helpful in dealing with the worry side of things? glaucoma.uk/events/living-w...
thank you so much for your help.
Hi - I think most people with glaucoma share your fear. However, if you start with contacting Glaucoma UK Helpline they can let you have different types of information. Also, worthwhile you doing a drawl through posts on this site. When you gradually build up your knowledge at least some of the fear is reduced.
I’m just like you Goldilocks64. My glaucoma has now become advanced due to uncontrollable eye pressure. Drops and Diamox did not control it, so 2 weeks ago I had aqueous shunt installation which was painless and everyone was so kind. My pressures now are really down and good do hopefully it’ll remain stable and the optic nerve damage won’t get worse. Vision still blurry. I don’t know whether that will improve? Regular check ups … steroid drops every 2 hours and antibiotic drops every 4 hours. Eye shield at night. I now need to get some UV400 sunglasses I believe to protect eyes and block UVA and UVB from su.nlight. Anyone know where they can be bought? Thanks. x
Try RNIB website - they should have them
Hi it all depends on which Glaucoma you have probably and your treatment, my mum's sees quite well in her 90s with her treatment and check ups, but your may well be different to hers, I am 10 years down the line and still able to drive with mine, as your consultant what sort of Glaucoma you have and carry out your treatment and keep up with check ups best advice anyone of us can give, best wishes
Hello.. we are all in same situation - same boat. None of the disease is good. Please accept the present reality first... then follow all the treatments and advice from the Eye Team (the consultant & co) . You may also see some of the helpful tips and discussion in this forum for reassurance and make you feel better. We are all here to support each other and crossing the glaucoma sea... with best wishes.
Hi, a similar thing happened to me, however after a week or two in a state of complete shock and crying etc panic, I decided not to worry about it and to take some personal control over what I had control over. There are lots of things you can do to keep your health and wellbeing in peak condition. I now take bilberry, Lutin and zeaxanthin supplement, Rutin, b3, magnesium, ginkgo biloba, (D3 and turmeric and black pepper?), fruit and vegetables especially green apples, pears, oranges, lemons, berries, collard greens (kale, spinach and Brussels sprouts etc), Mediterranean diet etc, eye exercises, exercise, raised pillows at night, omega 3 or krill oil, green tea. My breakfast includes porridge with chia seeds, flax seeds, pumpkin seeds, sunflower seeds, banana, strawberries, red grapes, goji berries, blueberries. You can use frozen berries as they last longer and are more economical. These are just a few tips. Something is working for me. I also cup my hands over my eyes with frankincense essential oil, cypress and sweet orange essential oils. I know this seems a lot however, it has become second nature to me now.
I was diagnosed around nine months ago with cataracts and now they cannot find them at all and say I do not have cataracts. My pressure has also gone down from 26 and 24 to 23 and 22 to 19 and 20 ( today). I was delighted with this reduction. I am hoping that something I am doing is working.
Today, with a second opinion, I was told I have ocular hypertension but that I do not have glaucoma which was diagnosed in April by another assessor, (albeit I am ‘a risk’ Category)
You do have the power to take some control over this so please do not worry constantly, just do what you can and it is bound to help in the long term.
thank you for your response. May I ask why do you use essential oils?
hi, I am a fan of essential oils anyway so I did some research into how they may benefit glaucoma. There is some evidence out there to suggest that Frankincense essential oil (king of all oils) can lower IOP ( more evidence needed as usual with these alternative remedies), and that some people have had success with this lowering of IOP. In view of this I thought I would give it a try. Cypress and sweet orange encourage blood flow so hopefully can help with blockages of the mesh system that can get blocked and consequently increase pressure. Hope this helps a bit.
ps: I have also read that a warm compress gently placed on the eyes can be helpful in unblocking the mesh system and can be quite soothing. There is some evidence to support this.
if you can, try to get a second opinion on your eyes. As I mentioned, I was diagnosed with glaucoma by a ‘non specialist’ ophthalmologist which is when I was mortified and then this week I was seen by a top glaucoma consultant who explained everything to me and said I did not have glaucoma snd that there is no evidence at the back of my eye to suggest this. Like everything, even ophthalmologists have differences of opinion and some will offer treatment and another may not. I found this to be very reassuring. Either way, if you look at it as being more informed about your own particular situation, you will feel more informed and in control yourself.
thanks for your comments. I definitely have glaucoma as my mum had it and I was diagnosed by a consultant at our local eye hospital.
oh ok. My Mother had it too, she did keep her sight though and had full sight when she passed away at age 80.
