I had my annual eye test yesterday and my pressures were 26 in both eyes, which was a big shock as a year ago they were 23. I was very nervous, which could have made them worse, but this is such a massive jump. Also, the nerve in one eye was a bit thin at the end, though she said that this eye looked better than it had a year ago, which I didn't really understand. She said I am now a glaucoma suspect and that I may already have glaucoma. I will be seeing a specialist. I had a brain aneurysm in 2012 and it left me with partial 3rd nerve palsy in my left eye. It is my right eye (my 'good' eye) which could have glaucoma in it. To be honest, I am feeling practically suicidal about the situation. Some people say that cancer and other things are worse than glaucoma, but I had cancer back in the 90s and it was easier for me to cope with. I have no family either, so noone to help me. Am also autistic which brings in its wake high anxiety and depression without this situation with my eyes. The whole situation is so overwhelming that I can't even take it in properly. It is too big to handle.
Glaucoma suspect: I had my annual eye test... - Glaucoma UK
Glaucoma suspect
I am sorry that you feel so worried and anxious by this diagnosis. I have lived with Glaucoma for nearly 20 years and it hasn’t altered my vision that much. Eye pressures can easily be controlled with eye drops. Some people have high eye pressures but that doesn’t automatically mean Glaucoma. You have yet to see a specialist so try to stop thinking fearful thoughts. It’s your mind that is causing the problem more than your eyes, One of the easiest ways to lower eye pressures and feel calmer is meditation. There are a lot of Mindfulness apps that help with anxiety too. Don’t worry you will be fine.
Thank you for your very nice reply. You are right when you say that my mind is causing the problem more than my eyes. I do suffer from high levels of anxiety generally. It is as if there is a river of anxiety running inside me and when something happens, I fall into it. Do you ever still go through times when you are really scared though, or is the fact that you are still seeing pretty well after 20 years give you confidence? I will look for some mindfulness apps.
xActually, I recently had a scary time with my eyes. The Eye Hospital diagnosed more vision loss in my good eye. And wanted me to have another op. I went through a lot of anxiety about it. I did more online research, which showed that for some glaucoma vitamin B3 slows degeneration. And I found other helpful things about lifestyle. I also meditate more frequently as that lowers pressures. And I have been looking at how the mind can adversely make our symptoms better or worse. The Placebo effect. So I believe we have a lot more control over our physical conditions than western medicine acknowledges. I decided to pay to see a private consultant who I had seen 2 years ago. And he had up to date technology to look at my eyes. He didn’t agree with Eye Hospital that my sight had deteriorated much. I was so relieved. I am an artist and eye sight is my everything. I don’t believe that having glaucoma automatically leads to blindness. Eye pressures can be controlled but our mental attitude can play a significant role too. What we believe matters! Change your thinking, change your life. How old are you? I am nearly 70.
Hello, I can understand your situation- as an artist, your sight is everything. It's good you went to see the private consultant. If you do this, can you still use the NHS services as well? I'm not thinking of going private but this information might be useful for the future incase I ever do. I am 65 and although intellectually I realise that, with my being mature in years, the chance is high that I will see for the rest of my life, I am still really, really scared. I read several languages and last year, as my pressure had gone up to 23, I started working on my listening skills 'just incase,' but found that this made me so worried about my eyes that I had to stop. This is one thing I would like to do if I can get past the fear.
Hi, yes, I sought a second opinion after initially being told my glaucoma was getting worse. Actually, in my case, it got worse during the pandemic and lockdown. I had just lost my Mum and sons both moved away. So it was a very lonely stressful time. I attribute the stress of that time to the deterioration in my glaucoma which had been stable for many years. So that’s why I am so convinced that our mental and emotional well-being is all connected. You can see a private specialist like I did. My last appointment with all the tests cost about £350. I have to decide now on whether to continue with NHS or to see the private consultant. I am probably going to do the latter. There would be no point in seeing both permanently. Opinions can and often do differ. But if you haven’t seen a specialist yet, aren’t you jumping the gun? Wait and see what they say. You seem to be convinced that you are going to lose your sight. I am not sure how you have reached this conclusion. Could it be ‘catastrophizing’. People that suffer anxiety often look at the very worse case scenarios. So a more realistic approach might help. There are different types of glaucoma and many of us go for years without noticing any vision loss. Age affects eye sight so we all suffer with that. My Mum was 95 and had glaucoma for years but in the end it was macular degeneration that caused her vision loss. You might like to listen to this lady Lissa Rankin . She is on YouTube and gives a Ted Talk on how the mind can heal the body. Or if the anxiety is really uncontrollable, you may get some sessions of Cognitive Behavioural Therapy through your GP.
i can understand how you feel. I was monitored for more than 10 years because of genetic glaucoma risk. The checks became routine - I was never going to actually develop glaucoma. Then one day I was told that my visual field had reduced, eye pressures had gone up and that I needed to start medication immediately because I had glaucoma. I felt pole-axed because suddenly the prospect of losing my eyesight had become a reality. It took some adjustment, and it didn’t help when people who I told said things like, ‘oh, yes my mother has that. She just uses eye drops’. But this was MY eyesight not someone else’s, and it felt as though people didn’t understand the significance of a glaucoma diagnosis. Unless I took control of things then there was the prospect of losing my eyesight. This has meant being rigorous with remembering to take medication (4x a day). It has meant chasing appointments when an overburdened health service is late with routine checks and being unapologetic in insisting that you are seen when you are due to be. It also meant keeping a dialogue going with my consultant regarding my treatment so that I understand the treatment plan, which is likely to change (ie different medication, surgery etc).
These are ways in which you can take control, which is important because if you feel in control things will feel more manageable and your glaucoma is more likely to remain under control. Your autism is another significant factor and will indeed add to your anxiety. If you haven’t already done so, make your treatment team aware of it and help them to understand how it affects you so that they can adapt and make things easier for you.
Glaucoma doesn’t have to mean that you’ll go blind, but it does mean that you need to take to take control of things as best you can in ways similar to those that I’ve described, and fight to keep your eyesight. The previous health issues that you refer to suggests to me that you have the resilience to do this.
I wish you luck.
Great post and I so agree with you when you say 'But this was MY eyesight'. It's important to understand that not everyone's experience of glaucoma is the same.
Thank you for your nice reply. You have described how I have felt for years-although I have always felt really stressed when my annual eye test comes round because of the risk of glaucoma, I didn't really think I would ever get it. People have already said to me, too, about various people they have known or know who had/have glaucoma and managed with drops, and someone pointed out that my late father never went blind with it. But, as you have said, this is MY eyesight and that puts things on a different level altogether. I really, really wish that my dad was here with me now. I will tell them at the eye clinic that I am autistic. I have an appointment this Monday and a follow up the following Monday. It is a relief I don't have to wait for months.
Hello there, I am sorry you feel so worried.I am at a similar stage to you.I have thyroid eye disease which causes inflamation and sometimes bulging of the eyes.At my last appointment it was noticed my pressures were raised in both eyes and I was refered to glaucoma clinic.Last week after tests and my consultation I was didgnosed with occular hypertension(raised pressures) in both eyes.At this stage no glaucoma.I am at increased risk because my dad has it.I have been prescribed drops and am awaiting delivery of the prescription.My dad has been using drops for at least 10 years and has no problems, is still driving etc.The aim of the drops is to reduce the pressure so it doesn't damage the optic nerve.There is also a laser proceedure I can have but it is about a 2 month wait so I will try the drops first.Yes your eyes are very precious,( I have had 3 previous surgeries for 2 cataracts and a detatched retina) but the positive in this is that you have had tests and something has been picked up early.You may not even have glaucoma and there are treatments to try and prevent it ever happening to you.Try to take it one day at a time(difficult I know when you have no experience of this before) and look at the positives that things have bern picked up early and there are treatments available.Best wishes to you.
Hello and than you for your supportive reply. I am sorry that you are at a similar stage to me and hope that you never get glaucoma. Like with you, my dad also had glaucoma and had to use drops from diagnosis onwards. He died in 1997 and didn't lose his sight. I hope that the drops work well for you. How high do your pressures go?
Hello again, my pressures were 24 in one eye and 26 in the other when I was referred.I didn't ask last time.I think pressures are different for everyone in that someone may be ok with pressures at say 25 but others may have a problem with it.I think it is about your own unique pressures, the ones that are best for you.I picked up my drops yesterday.They are called monopost/latanoprost and they are in a single dose container for me.I have been prescribed preservative free ones that are less likely to cause irritation.My eyes already can be very uncomfortable with my other eye condition.I put them in last night and had to wait at least 5 minutes to put my other night ointment in.So far no problems.Wishing you all the best with your future appointments.
Hello Fran555,
Your optometrist was right to refer you for further tests.
It is always worrying when someone is referred to the eye clinic for further tests. There has been no definate diagnosis of glaucoma. Only the consultant can tell you if there are signs of glaucoma.
Your eye pressure (intraocular pressure) has always been on the high side at 23mmHg, it shows that your eyes can tolerate a high pressure, which is called Ocular Hypertension. If there are signs of glaucoma, I would imagine it will be in the early stages, which is always a good thing.
The main worry or concern many people have with glaucoma is losing their sight. This is very rare. It tends to happen to people who didnt get their eyes tested regularly or didnt act when they noticed a significant change in their vision. By reading your post, I would say that is definately not the case for you.
I know it is easy to say try not to worry, especially as you mention that your autism is heightening your anxiety and depression. Just try to keep in mind that this a referral for suspected glaucoma and nothing has been confirmed yet.
Thank you for replying. I remember even 10 years ago that I had a pressure reading of 22. AT the time, I felt the worst had happened and for a few minutes the tension was gone because of this, and when they took the pressure again during this short time frame, it had dropped to 19. Since then though I have been so tense whenever my eye pressure is taken. But would the fact that the nerve is thin at one end mean I have glaucoma? Also, I don't know the technical terms here and hope that you can understand what I am trying to get at-a machine was used to test my eyes where I had to look at a green cross and red lines and at the end there was a mass of readings, one of which was a circle divided into 'slices' like a cake and one portion was red. Apparently none should have been red. I did well on the flicker test for my visual field.
It sounds like an OCT, which shows a 3D image of the Optic Nerve which shows in layers, so it sounds as though this is what you had. Its gives a better view. Thinning of the nerve and the portion of red, warrant further tests to be done to check.
Hi Trish, I had my first appt. at the eye clinic yesterday and they did an oct test there, along with the visual field flicker test. I see the consultant next Monday and will also have a pressures test. The nurse said to me that the consultant may not be sure if I have glaucoma or not (am assuming she looked at the oct results and maybe they were a bit different from last Monday's results?) and may ask me to return in a few months. I have been looking online all weekend about oct tests and one site said that a portion of red definitely means glaucoma, but am hoping that this isn't necessarily so.
OCT tend to be the same. The only time there would be change would be if there was progression. As the nurse said, the consultant may not be sure if you have glaucoma and mark you as a glaucoma suspect. Just see how you get on at the appointment.
Hi, one thing to keep in mind is that intraocular pressure is not a static thing. It changes throughout the day, and can be different day to day. Mine will be different if my appointment is at 9am (lower) vs. 3pm (could be 3-4 pts higher). Unfortunately this is not typically taken into account. Also as you suspect, anxiety and/or stress can have an effect, though many doctors will scoff at this. As someone who monitors IOP at home, it is 100% true for me. When I go for appointments, I have found that mindful breathing and just tuning into the sounds around me, helps a lot to relax. It's good that you are getting further evaluation.
I was diagnosed, I think, in 2008/9 or so, hard to remember exactly now. And that was after having had surgery for retina detachment 15 years prior, which claimed some of my vision in that eye.
I read this book recently, which I found to be quite helpful: The Beauty of Dusk, by Frank Bruni. He is a well-known journalist/author (NY Times) who woke up one morning to learn he had an eye stroke which took a lot of the vision from one eye. It has helped me to have a different mindset about this condition. Best wishes to you.
Hi Fran the same thing happend to me. For about 15 years my pressures were 21 & 23 and because I had thicker Corneas they said that no treatment was required except yearly checks. In early February I went for a scan and a Field of Vision test my pressures were 21 & 23 I went back two days later for the results and the pressures were 28 I was horrified. I couldnt understand why there was such a jump. I was prescribed eye drops to protect my eyes and they are not pleasant but if they protect my eyes I will continue to use them. The anxiety for the past three weeks has been dreadful I am sure that anxiety plays a part in raised pressure and as the Consultant said blood pressure rises when you are anxious so it seems likely that eye pressure would rise as well.
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