So so scared now. I’m so fed p. I know I’m going to go blind. I had laser on one eye in July and my pressure went down to 19 went to other eye done today and they wouldn’t do it as my pressure was 26 in the eye they were going to do and 20 in the wye that had been done. He said this is showing I maybe unresponsive to SLT I can’t see the point of going on anymore. My pressures are just upping all the time and now I have to wait another 8 weeks before they see me not knowing if damage is occurring. I’ve had enough of this life
I don’t want to go on: So so scared now. I’m so... - Glaucoma UK
I don’t want to go on
55 Replies
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Contact GP or hospital and tell them how you're feeling, you need professional help with this now
in reply to Jennymary
I will do Jennymary Thankyou. Hope all is on the mend after your fall. Xx
Hi Julie bless you, I really feel for you, the path we all travel along is far from easy however please, please believe me it is worth it! I was booked in for SLT however at the initial assessment for it the consultant just shook his head and said it wasn’t the way to go, my pressures were well into the 30’s! . Eight weeks is a long time to hear of the next steps, you can wait and let your anxiety get the better of you. Or you can take control contact the consultant, or his/her secretary, or the hospital eye liaison nurse, or PALs, I think all NHS have PALs, they have given me so much support and they know how to get to the person that you really need an answer from. Contact Glaucoma U.K., both Trish and Helen have given me so much support and strength to keep going. My eye hospital has an on call eye doctor after 6 that I have been able to talk to, maybe this is another route. Julie I ended up in A&E twenty years ago with all the symptoms of a massive glaucoma attack, it was diagnosed as severe migraine, eventually almost two years later I was at last diagnosed with Glaucoma. The reason I am telling is because it is actually rare to lose your sight, and I didn’t on that night, which actually amazed consultants after. I really thought my eye was going to pop out! So goodness knows what the pressure was. I also have been told on more than one occasion it’s not just to do with the pressure, so when mine were higher than yours I was reassured and supported that my eyes were still ok. So Julie you can do this! Take some control, talk to us, we understand however at the same time say I need some answers so make a plan and take action. Julie I don’t have the answers you so desperately need but I do understand the struggle, frustration and despair that you are feeling. So make a plan and let us know how you get on! Sending big hugs 🤗 xx
in reply to Sunshine88888888
Hi Sunshine88888888 Thankyou so much for your lovely message you always help I don’t want people on here to think all I do is moan. He didn’t rule out doing the laser in 8 weeks just said he wanted to see if there was improvement in the eye that had been done. I went in this morning with such a positive attitude. I will call the hospital and all the others you suggest. Thankyou so much. By the way how are your bubbles. Xx
I agree with Jennymary. You need some professional reassurance that everything is being done that can be done. I have had problems in the past, didn’t ask for help, blundered along and found solutions purely by chance. That’s not an example I think anyone should have to follow. I know health professionals are busy and you feel bad about “bothering” them, but that’s what they are there for! Look after yourself and let us know how you get on.
in reply to mrswaffle
Thankyou mrswaffle i will definitely do that
They are being careful in that they don’t want to do the SLT with those pressures ,so giving you more time to see if the eye done improves more before risking the other eye , if not I’m sure they will suggest something else like an additional drop.Try not to worry, I’ve never had drops and my pressures at their highest were 26 and 28 .
You are being seen regularly and imo quickly compared to my hospital, but if you need to speak to someone at your hospital do that for reassurance x
in reply to Lovemy2woofs
Thankyou so much for messaging me and reassuring me. Hope your well x
Hi Julie, sorry other how down you are feeling. As others have suggested, please try to get some professional help from either your GP or the consultant at the hospital you are attending. Something to think about is that eye pressures go up and down all the while and are different at different times of the day. In June my eye pressures were 38 in each eye, early August they had gone down to 15 in each eye, then went up to 29 in one and 20 in other. On Monday they were 20 and 15. All over the place. And remember you are not alone, we are all with you on this site. xx
in reply to Engima
Thankyou so much for messaging me. I asked about damage to the optic nerve and he just said carry on using the drops. I’m not happy and so scared x
Engima in reply to
Know how you feel. I asked how much damage had been done to my optic nerve and was told I would need more tests after both my cataract ops had settled down to find out as the cataracts had got in the way of proper readings. So probably going to have to wait for around 6 months. In the meantime it was - keep taking the eye drops. But at least we are both on the list now and the eye drops will help keep the pressures down. xx
Hi JuliePlease don't feel that you are alone with this, you are not.
I am also battling with anxiety and depression over this horrible disease.
I feel like my eye pressures are not improving, no matter what they do and I am so scared but talking with people who have been through the same thing as me helps.
Please give the helpline a call and speak with them, it will help to calm you.
Xx
in reply to callie77
Thankyou so much for your message. I’m so so scared why am I just being sent away. I don’t understand x
Hi I'm new on here Taking drops in both eyes,floaters,short sighted and migraines over the years
Just found the site and I'm finding it a comfort that I'm not on my own and people understand
The opthamologist today did answer a few of my questions but I seemed to be rushed about, they are busy I know but if you have anxiety anyway a bit of patience is needed
Thanks for being here it's lifted my spirits knowing I'm not alone
Hope I have plopped this message in the right place x
Julie, I have experienced really high pressures like that. When I see the ophthalmologist he always immediately checks the optic nerve at the back of the eye. As long as they remain undamaged he just says to continue with the pressure lowering drops. Until the pandemic arrived I was seeing him privately every few months for reassurance on the optic nerve.
in reply to Celtic
Thankyou he just said he would see me in 6 weeks. It’s worrying me so much x
Ditto what everyone else has said. My pressure was at 44 when I was first diagnosed and never went below 20 with drops. Since the Trab it has gone down but I haven’t got another appointment until Dec so I don’t know what it’s doing now. Hang in there sweetie. Xx
in reply to Wales99
Hi @wales Thankyou so much for messaging. I’m really trying not to get on anyone’s nerves. Your all so supportive. Hope you are well. Xx
Wales99 in reply to
No! Not getting on anyone’s nerves. We all understand. I really do think that Jennymary is right though and it may well be worth seeking professional help for your mental health. I had counselling last year and it helped me enormously. If you can afford it then there are lots of counsellors around but if not can you speak to your GP? You can’t carry on like this it will make you ill. I was like that earlier this year and it really was making me ill. The only plus side for me was that I lost weight 😂. Not a good way to lose it though & I’ve put it back on now. Take care. Xx
in reply to Wales99
Hi Wales99 Thankyou for messaging. I feel like I’m always on a downer to everyone on here and I’m sorry about that. Xx
Ohhhh Julie. Can you approach it from the other direction?
Actually I agree that weeks of waiting is very difficult to handle . I think its wrong that patients should wait that long so how about channeling some of that restless energy into campaigning. Write to your MP, get them to join the appg on eye health, Why are patients waiting six weeks for a field test that could take place in a couple of weeks. Why don't hospitals routinely let patients have sight of their field tests if they want them. Where is eye health education in your hospital. Where are the services to help worriers cope? You won't be the only worrier.
This is my task for you. come back and report to us on what self help services you have found in your area . . . and if there arent any then you know what task 2 will be.
Hi Julie, if it helps just a little bit I have also been through all the worry you are feeling - and here I am 17 years later without going blind! It’s always disappointing when you hear your pressures are up but that happens to all of us as they fluctuate all the time. Yours may have been a little high due to all your stress and anxiety so I would say try to relax and forget about it and as others have said, contact people who can help you. Easy to say I know, but we have all been there and understand how you are feeling. xxx
in reply to Redshoes15
Hi Redshoes15 Thankyou for messaging me. It’s so good to hear from everyone on here that is living well with gluacoma. I just didn’t understand why he wanted to leave me with a pressure of 26 and not see me for 6 weeks. It’s so scary x
Thankyou I will try and call I only have the number for the eye clinic at the hospital I don’t know how or who else to get hold of x
Hi JulieWas thinking about you this morning. I hope you're feeling a bit better today.
I know we never stop worrying about our eyes and like you I am also living in a state of panic.
I saw my consultant yesterday and my pressures were 23 and 24 but the good news is vision field was the same so I'm holding onto that.
I got to see him by ringing his secretary and almost crying down the phone telling her how bad my anxiety was.
She fitted me in to see him a bit earlier so it's worth a phone call.
Hope you ok xx
That’s good and by doing that you put someone else back I’d call that a result
in reply to callie77
Thankyou so much I will be calling on Monday. Have a lovely weekend and Thankyou again for your kind messages. Have a lovely weekend x
Just hang in there as there will be professional help to help you with all your questions that you need to know
Hi Julie! I only just saw your post. I hope the posts from your friends on here have helped calm you a little, because I read your post with some concern. I hope you were just having a momentary dark moment and today is a bit better. I can totally identify with your state of mind. My lovely you must act. Waiting is not helping you so I think you must do something right now. First practical help with this high IOPs issue: so I would call the eye clinic secretary immediately and ask for more detail and explain you are suffering a high level of anxiety. Ask them why it is okay you are left waiting 6 wks with a high IOP. There may be a very logical reason. Then act to deal with your anxiety: I would reach out to your doctor and say those exact words you said here: “I don’t want to go on” say you need help for your anxiety caused by your diagnosis. Ask for a referral to talk to a counsellor. I have done exactly this in the past and often you can get a few sessions free on the NHS to talk through and see if it helps manage your anxiety. It really can help. Push for that help. Lastly, it’s easy to focus on high IOPs being the be all and end all of glaucoma but they are not the whole picture. I’m discovering that glaucoma diagnosis is not an exact science, it’s way more complicated. It’s good to learn about glaucoma but a little knowledge sometimes is a dangerous thing and we make assumptions without all the info. On IOPs: Some people have normal tension glaucoma with very low or average IOP and still have glaucoma. Others have stupid high readings and never have glaucoma sight loss at all. I believe that the hospital would not send you away if there was a high chance of sight loss from a higher IOP reading and for 6 weeks. But you must press for more information if you believe that will relieve your anxiety. Please don’t sit there in misery as it could ruin your life more than your glaucoma and you sound like you have a lovely life and a lovely family. 🙂 Forums can’t give big hugs but I am giving you a huge virtual hug. My lovely you are not alone. You are not the only one who gets frightened. Like your IOPs your moods will go up and go down but if you feel “down” more than you feel “up” then get talking therapy, you may need that little bit of extra help right now to cope and to move forward! ❤️ Same message to anyone really struggling with anxiety on this forum, don’t suffer in silence contact your GP and get extra help now. 👍🏻 If and when I need it again, I know I will.
in reply to Beecalmed
Hi Beecalmed ive only just seen your lovely lovely message. I will be calling on Monday to see why I’m being left 6 weeks. I know Gluacoma is a horrible disease but after so much support on here from yourself and all the other lovely people I do try and tell myself I’m overthinking and googling far far to much. I will try and get to my doctor or a telephone call at least. I do have such a wonderful family two lovely sons a lovely partner and a beautiful little granddaughter. I can’t stop myself think about them getting this horrible disease either. We have all just had a wonderful week in Devon together as well. Thankyou for your message again and your virtual hug. Hope you are enjoying your weekend. Xx
Hi Julie, as you know I have had SLT... it amazes me why one country differs from another in treatment and information. Just to let you know, slt is considered a failure if your pressure does not go down after 6 months yours is only 6 weeks old and you had an amazing reduction. Your 2nd eye should have been done 1 week later, that was a ridiculous time to wait.
Also In january my pressure was 28 in both eyes after stronger medication 2 kinds of drops it reduced.. i did not want to take 2 kinds of drops, my doctor gave me slt at the time my pressure was 23 and 25 with 2 kinds of drops.
After slt my pressure has varied by 1 point and my doctor was not bothered by that all.. my doctor told me if your pressure is under 21 and no eye damage then that is what your body is coping with. Your pressure can go up and down and i would not say that from 19 to 20 is a reason to say its not working. He has frightened the hell out of you and you have been waiting 6 weeks and now a further wait and this is not right clearly for your mental health.
This is one of the reasons since my diagnosis I do not want to return to the nhs in the uk. The waiting is too long and the time for a procedure is too long and it looks like in the pathway of glaucoma many people have different procedures. Go private Julie, if you don't get a satisfactory answer and if you are not comfortable with this consultant.
I have my next appointment this month for a field test and pressure test with my consultant. my last pressure was 17 and 18. When I go there I will also ask the question about your situation just to clarify. I do understand exactly how you are feeling, I have a busy job thank god, I only really think about it when i have time. sending my best wishes as we all do. valfrance
in reply to valfrance
Hi valfrance so nice to hear from you. He never said anything about it taking up to 6 months to work but I don’t doubt you for one minute. I know the NHS is amazing but it’s so scary having to wait. At this moment in time I don’t have choice. I will just have to wait the 6 weeks. I hope everything goes well with your next appointment. When he said to me he would see me in 6 weeks he wants to check again to see if pressure has gone down. He said he was hoping that it had gone down more than 20 when he seen me Friday. It’s just scary
valfrance in reply to
Absolutely ridiculous get your 2nd eye done and demand it is done
Good luck Julie, we are all behind you and thinking of you, you will get through this with a good positive result, hang on in there !
in reply to floki7
Thankyou floki7
Hi mate Hold on in their and call the eye clinic and tell them where you are at. And the GP. You need and deserve all the support possible. I had laser to open the channel and the pressure went to 15 and then up to 32. But they got them down again. Damage happens slowly and there will be treatment options .
Xx
in reply to Sufitzy
Thankyou I will call them definitely. Thankyou for being kind x
Hi Julie. I can only echo what others have said and it looks to me like anxiety is getting in the way of you thinking with a clear head about your illness. So I’d urge you to speak to someone about your mental health. No one has a crystal ball that will tell you if and when you will go blind. The chances are you won’t but do you really want to be thinking each day that you will go blind? That sounds quite depressing and no doubt that is a very real thought for you right now. You are very early on your glaucoma journey so you need to learn to live with it. It’s not going away but you need to not make it your every day focus in life or else it will be a pretty stressful life you’ll have. Reach out to someone and talk through your fears and then maybe find a new hobby. We can stop our health getting in the way of living our lives. If you Google glaucoma on a daily basis, stop. It isn’t healthy. Dig deep Julie. We all have the ability to be strong when we need to be xx
in reply to Vich81
Thankyou for such a lovely message xx
Hi Julie, I really feel for you with your anxiety. It can really take over your life if you don't try and do something to help that. I agree with other people on here about that. I have been there with that level of anxiety and it just makes you feel worse and does nothing at all to help your glaucoma.
I am struggling with my eyes at present, operation, drops etc. I have had glaucoma for 25 years and I can still see ok for everyday life including driving. Have had slt in both eyes, loads of drops and an operation and booked in for another one. If I feel myself getting anxious about it I nip it in the bud by having my strategies in place to deal with it.
It really helps if your consultant actually takes the time to explain things to you. I have found that if they don't do that and just brush you off then that makes the anxiety far worse because you can imagine all sorts of things that aren't true. So push for more information on what is happening. Sometimes however, they can't give you a definitive answer because there are so many variables. But if you are being checked regularly then you should have peace of mind that all is being done to help you. You do have to be your own advocate at times though and persist in getting appointments and getting more information. The consultant's secretary can be a gateway to this I have found.
Never worry about 'moaning' on here. It always helps to talk about it with other people who understand.
Sending you some love x
in reply to Astilbe
Hi Astilbe thankyou for messaging me it’s very inspiring to know you are leading a normal life with gluacoma even though you’ve had operations along g to he way. I really am trying hard for it not to take over my life. If it’s not myself I worry about it’s my sons has I don’t want them to get it. I hear so many peoples lives x on here and how they cope I do need to take note from that. I will have to try and find out how I get in touch with the consultants secretary I havnt done that yet. Do you have open angle glaucoma. How old were you when diagnosed I was 53 diagnosed last year in December. Thankyou again for taking the time to message.
Poor you, you're having a depressing time. But just keep plodding on. Yes, get your GP on board, don't give up. I know this is a hard time for getting help, but stay as calm as possible and be firm. If they can't give you SLT, they can likely give you more frequent/better drops to tide you over. Do all the good things.... not bending over (full knees bend) not picking up anything heavy, trying not to get stressed so your BP goes up. Some also say not too much coffee..... ouch! There will be another answer. Laser is a quick, easy option which can be done by less senior doctors and I'm sure they'd like as many patients as possible to be cured by that, but you may need something a bit more complex that will keep you in a day or two, and they will be short of beds. So, consult your GP to share your worries and push your case, keep as calm as you can.... I find having a "hospital bag" packed in case I'm told to "come now!" at times like that helps me to be calmer. When I was in for a few days at least every month, back in the early 90s, I had a list on the back of the wardrobe door with everything I needed, washbag, hairdryer, nightie, dressing gown, charger.... load up on soothing tracks on your phone (in those days it was my Walkman!). Even if you never need it, it helps you feel more in control. Glaucoma is not in control, I am! One day at a time. You can do it! Take care.
in reply to Hula48
Thankyou so much for your message. I’m a terrible overthinker. I do know deep down they can do many more things. Luckily I don’t drink coffe so wouldn’t miss that 😂 x
Helen_GlaucomaUKAdministrator
Hi JulieBookworm1968. Hope you got the personal message I sent you?
Hello Julie, you might have a look at the book "Unwinding Anxiety" by Jud Brewer (MD, Ph.D.). This, and the associated app, has helped me tremendously. He is a pyschiatrist, neuro-scientist and a long time meditatator. He combines the science with a mindfulness approach to anxiety and stress. I have been able to see that anxiety is a habit of the mind, and in seeing this it has become more manageable.
I was diagnosed with glaucoma over 10 years ago now, and it hadn't really been an issue until early this year when I ended up needing trab surgery in one eye. This was an extreme anxiety-provoking time for me. I resolved to take some action and do something about the anxiety. It is possible.
Also working with a mental health practitioner can be quite helpful. Glaucoma is one problem, but the anxiety is yet another, and it can be approached and we can learn how to better manage it (I don't like using the term "manage", but I don't have a better word for it at the moment)
in reply to Derfahrer
Thankyou for the message. Your definitely right my anxiety is completely through the roof at the moment. May I just ask do you still drive and manage your life fine with gluacoma. I hope everything went well with your trab.
Derfahrer in reply to
Hi Julie, yes, still drive, ride my bicycle, still working. Also I previously -- 30 years ago now -- had a partially detached retina, so I've dealt with that too. Cataract surgery 8 years ago. So I've had a few eye surgeries. The trab has turned out well, so far (8 months now). I have some peripheral vision loss but so far it has been manageable.
One thing I have learned from all the mindfulness work I've done in the past year is that nothing is ever for certain. We want reassurance that things will go a certain way. They may, but they may not. The way out is to take things as they come, deal with them as they come, and to have trust in the flow of life.
Derfahrer in reply to
One other thing I wanted to mention: better relating to my stress and anxiety has actually helped to lower my eye pressure, so there is also that motivation to work on it. Along with exercise, getting sufficient sleep, cutting out caffeine, it is possible (though not guaranteed) for lifestyle to have a positive effect on IOP.
in reply to Derfahrer
Thankyou so much for both your messages. So encouraging to hear how well you have managed your gluacoma.
Derfahrer in reply to
I seem to be managing ok, but it's not always smooth sailing. I still have anxiety and worries, but the big change for me is being able to recognize it, recognize that these are mind habits, and in the process not get so caught up in the anxiety.
Hi this is my first reply. I have similar problems. The best I have done is get details of the ECLO eye nurse she listens and is coming with me on next appt.
Details at hospital
Also contact RNIB, very impressed
Good luck
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