Hi Everyone Thankyou for Good Luck Messages. I’m back from Hospital now not really knowing how I feel. I didn’t get laser done in other eye. Pressures were 22 and 23. I now have to take 3 drops a day my usual combination drop of Lantanprost And and Timolol in the Morning then half a hour later I have to take My New Drop called Dorzolamide then I have to take the me w one again at 8pm. He’s going to see me in 8 weeks if pressures have gone down he will laser. He said I need close monitoring that worried me but I guess I have to take a positive because I’m being seen so quickly xxx
Back From Hospital : Hi Everyone Thankyou for... - Glaucoma UK
Back From Hospital
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Oh Julie it does seem like a mixed bag and I'm sure you emotions are all over the place. He hasn't ruled out laser and he's obviously trying his best to get your pressure down. You know you will be seen again in 8 weeks which I know can seem like a lifetime but he's giving the drops time to work. Fingers crossed the additional drops do their job. I have been thinking about you. Big hugs Julie as I know it's not great when the hospital outcome doesn't go to plan. The consultant has more tricks in his bag yet he can use to get your pressures down. X
in reply to
Thankyou so much Hidden I do feel emotional not once have I come out of hospital yet with them saying your pressures are good. I guess 22 and 23 are not horrendous but still to high. I hate the puff test because I really don’t think it’s that reliable so I’ve read. I’m just so anxious with this disease. I had a meltdown yesterday and my oldest son went in he nhs website and said just listen it’s a common but controllable disease but it’s just waiting for the control isn’t it. I still think next month next year I won’t see but I’m going to have to deal with it. Thankyou for being there and your lovely support xxx
in reply to
I totally understand your feelings, all you do want is for your pressure to be stabilised at a level your consultant is happy with. I was the same initially as nothing seemed to work for me either, not drops ,not cataract ops, not additional drops but now hurrah for me a trab seems to work. Your consultant will get you there too,it just takes longer with some people than others. It is a controllable disease but it's not a one size fits all disease unfortunately, so it's working the way through the options till they find the right one for you. I think this time next year and the year after you will have your vision and the year after that and that and that..... You are compliant with your drops,you attend your appointments,you do everything correctly and you will get there, it takes time though x
in reply to
Thankyou I really hope so I just think while it’s not controlled what damage is being done xx
in reply to
My friend's mum has consistently high eye pressure of 27 ,she's in her mid 70s and has no vision loss at all. She's on no drops and is just monitored every 6 months. Our eyes all tolerate different pressures,I was losing vision and having optic nerve damage at pressures much lower than that, we are all different and so far your eyes are coping with slightly higher pressures which is a positive . I know you will worry until the pressure is stable and that's natural. Let's hope the new drop works and you can get laser treatment x
Well done Julie on getting through another appointment. It does sound like a mixed bag but hopefully the new drops will bring the pressure down. At least they are trying everything.Take care x
in reply to callie77
Thankyou so much. I really hope so xx
Hi Julie, it is hard going to the appointments and things not going the way you hoped for. But what’s really important is that your consultant is monitoring you closely and is making sure he gets your pressure down before deciding on the next course of treatment. Take care xx
in reply to Spanieldoglover
Thankyou it’s just so scary because when I got diagnosed they said I was lucky my optician spotted it and they could stop it progression now I feel they are not saying that
Spanieldoglover in reply to
I think consultants can sometimes forget how nerve wracking these appointments can be for us and so are not very reassuring because they treat people all day everyday. It doesn’t mean that they are not able to treat you and stop progression. Your optician probably knew what a shock it was and so spent the time to explain treatment can stop progression. From what you have said it was caught early and you have no visual field loss and my consultant said to me that would be the best time to start treating it … before damage.
I know it’s hard not to worry, maybe next time you see your consultant you can ask him about your concerns x
Hi Julie. Sorry to hear you have not had the laser treatment your other eye. I too am now gong to have to take three drops a day. When I went almost two weeks ago, my pressures were 21 and 23. But when I went to the optician the next day they were 21 and 15! I have had to wait nearly two weeks to get my new eye drops, First of all I was given a prescription for Dorzolamide/ Timol which were not preservative free. I took two days to reach anyone age the eye clinic to get the prescription changed. This was then changed to the same drops but preservative free and electronically sent to my doctor's surgery. Having not seen any prescription for nearly a week I kept trying to phone the surgery with no success. So went down there on Tuesday - the doctor had been sitting on it and hadn't activated the prescription. So the receptionist made sure it was sent to the pharmacy the next day. I rang them yesterday morning to be told they had received it and to wait an hour for collection. I went in the afternoon and was told it had been done but the pharmacist had to check it and as they were giving flu jab could i call back after 4pm. I couldn't so went this morning. Now have the eye drops. What a saga, cannot believe it. I also have to take the Monopost just before bed. Hope your pressures go down so you can have the laser treatment soon.
in reply to Engima
Oh my goodness that is so so worrying. Also like you say pressure could be so different next day. It’s mad xx
in reply to Engima
Omg what a ridiculous carry on,you really couldn't make it up . Thank goodness you now have the drops,let's hope they work and no allergic reaction. It's really disgusting they the GP didn't activate the prescription,it really shouldn't be down to you to be chasing it up the way you've had to . Hopefully all's well that ends well as my nana used to say.How are you apart from your prescription saga, which I'm sure was mentally exhausting ? X
Engima in reply to
Hi Witchie. As you say, one couldn't make it up! Just wondering now - do I use the new drops first, then wait 15 mins or so and use the dry eye drops. Any idea? We are not too bad, but missing Bletchley very much. We look at his photograph every day and I am going to get a lot more photos of him printed and put into an album instead of just seeing them on the computer! He also won an award a year or so back - a local animal charity ran a competition with lots of different classes and we entered him in several. He came second for the pet with the longest tail! Got a rosette, so will try to get a deeper frame to put that in and the award letter. Never having had children - all our cats (we have had three previously to Bletchley over the years) have been a major part of our lives. How are you and Lu? Have a lovely weekend.
in reply to Engima
Aww that's a lovely idea having an album full of Bletchley and you definitely need a framed pic of him with his rosette and award letter. That's so cute he won his for having the longest tail 😻. He was your wee furry boy the same as Lu is my wee fluffy girl, they are family not pets and anyone that disagrees is wrong. You will miss him,he was a huge part of your life and it's unbelievably sad when they are gone but I do always try to think of all the happy times instead . Sorry no idea with regards eye drops as I just don't use dry eye drops.
I'm headed up to Glasgow on Sunday as I have my pre op covid test on Monday morning and then my op on Wednesday and I will just stay up there for 10 days or so as it's such a trek from my cottage to Glasgow much easier staying up there.
Enjoy your weekend and good luck with drops x
Engima in reply to
Thanks Witchie. So good to know that someone else understands and cares. Wishing you all the best for your op. Enjoy Glasgow afterwards. Let me know how it all goes. Have a lovely weekend. x
in reply to Engima
I definitely do understand and care. Thank you, I will just be glad to have it over and done with. You have a good weekend too x
Hi Julie,
I think given that your consultant has said 8 weeks for another appointment means he's not overly concerned about your situation. If he was he'd have you in sooner.
I know it's easier said than done but you have to try and find a way to relax because the stress won't be helping your health. Many will say this won't affect eye pressures but if truth be told they quite often have no idea why people's eye pressures elevate. My rule of thumb is to live as healthy a life as I can and that gives my eyes the best chance.
So try and switch off from it for 8 weeks and make the most of whatever Christmas we will be permitted to have.
in reply to
Thankyou Hidden for a lovely message I’m going to try and relax x
Hi Julie
8 weeks will fly by and hopefully with new drops the pressures will be lower so that laser on other eye can go ahead . 🤞🏻
Just relax and not focus on it , hard I know , but 22 and 23 are not horrendous , and they do fluctuate .
Mine were 18 and 22 and I got discharged ! Though I don’t have Glaucoma , it did worry me , but he wasn’t concerned about pressures .
Xmas is coming so enjoy ! I’m sure you will be fine and the new drops will do their job x
in reply to Lovemy2woofs
Thankyou so much. Your so kind messaging me. I really am trying to relax. Hope everything is ok with yourself xx
Lovemy2woofs in reply to
Plodding along 😂 it’s my birthday tomorrow so going out for a meal and forgetting I’m diabetic for the day 😊Waiting for my diabetic retina screen results , but other than that , I’m not thinking about my eyes , but no doubt will get anxious in Jan when my opticians visit due as this will be first time for pressure reading since hospital discharged me beginning of Sept.
in reply to Lovemy2woofs
Happy Birthday and Enjoy your meal. Definitely don’t think about your eyes until then. Xx
Lovemy2woofs in reply to
Thank you x
in reply to Lovemy2woofs
Happy Birthday 🥳🎉.Eat cake,enjoy your meal and have a great day x
Lovemy2woofs in reply to
Thank you x
Hi Julie, if your consultant was that concerned you'd be back sooner than 8 weeks so that's a positive step, I'd use the 8 weeks to enjoy yourself, maybe do some Christmas shopping (in shops, not online.) write cards, and generally keep busy, the only time you think about your glaucoma is when you put your drops in (easier said than done)
in reply to Jennymary
Thankyou
Hi Julie, sorry your appointment wasn’t quite what you wanted to hear. However it’s good that you are being closely monitored and being put on the right drops to get your pressures down. If it’s any consolation I know exactly how you feel! I had an out patient check yesterday and the pressure in my operated eye was down to 10 -great. BUT, pressure in my other eye is creeping up at 24 so it looks likely that I will have to have a trabeculectomy in the other eye early next year. In the meantime he has added yet another drop to that eye (now on 5 in total) to try and bring the pressure down and he will see me again in 6 weeks. All I can say to you is try not to worry constantly about your eyes. I used to be exactly the same but now just accept what comes - after all we all have this horrible condition and have to live with it. The main thing is not to let it affect your life and waste time when you should be enjoying it. You haven’t lost any vision and are still young. You have many years yet before you may need surgical intervention - I managed on drops until I was 71 and despite some vision loss I can still see quite well. So don’t despair and enjoy your friends and family. Good luck xx
in reply to Redshoes15
Ahh Thankyou so much for such a lovely message. I’m glad your pressure is down in operated eye obviously you don’t really want another operation but if it works then it’s for the best like you say. May I ask how long you have had the condition is it open angle do you still drive. I let this condition consume me everyday but I need to listen to all you Lovely people xx
Redshoes15 in reply to
Yes Julie it is open angle. I have had it 17 years and I still drive (apart from when having surgery!) xx
in reply to Redshoes15
Redshoes that's great the pressure in your trab eye is still low but not so great about other eye. However like me you've been through the op previously and survived 😁 so you know you can do it again if necessary. It's a thought I know, I've got mine on Wednesday coming and I'm just putting into the back of my mind until then. That's a lot of drops to contend with and that's the positive I'm focusing on for myself no more drops hurrah. Have a great weekend x
Redshoes15 in reply to
Thanks Witchie, yes like you I’m not looking forward to the prospect of another trab, but it’s either that or my life will be ruled by eye drops! I hope all goes well for you next Wednesday, as I’m sure it will. I’ll be thinking of you xx
in reply to Redshoes15
Thank you ,I'm sure it will be fine,it's just the thought of going through it again but there are way more positives than negatives. X
Have you tried any supplements to try and lower the pressures? "Scientists have found that baicalein significantly lowers eye pressure and may act as an all-natural treatment for glaucoma.." this is from science daily. I haven't actually tried it and don't need to lower pressures at this point but could be worth a try for you Julie. Who knows if you combine taking this daily with meditation and jogging you could get it below 20. Hang in there 👍
in reply to
Thankyou is the supplement in tablet form x
in reply to
Yes it's capsules: amazon.co.uk/Supersmart-Scu.... or I suppose it could be in local health shops imo anything worth a try xx
in reply to
Do you think wye consultant should know first
in reply to
Up to you ay in my experience doctors will normally rubbish anything that isn't approved medicine but you could ask if there's any known interaction with the drops you're taking or you could see if your local pharmacy has it and ask them.
Redshoes15 in reply to
Thanks for the info about the supplement sguy. I may give that a go, thank you x
in reply to Redshoes15
Let me know how you get on. I'm probably going to get some to have on hand just in case my pressure goes up again. 🤞 It works for you xx
Sorry to hear it was not more encouraging but hopefully the new regime will get you to the place you need to be for the laser. Keep trucking xx
in reply to Sufitzy
Thankyou so much xx
Hi Julie. All will be well I’m sure. It’s hard waiting for appointments and it’s hard going to them…we can’t win!! Things don’t always go as we expect them to and it’s worrying. You have no vision loss and they are looking after you. It all sounds very positive. Try not to worry. I know it’s easier said than Don. I worry a lot but I have had surgery and have some vision loss in both eyes…but I only notice it if I close one eye!! Keep your chin up..we are here for you to talk. Xx
in reply to Charliecat123
Hi Charliecat123 it’s very true what your saying it’s worrying all the time but I do know I’m in good hands I just need to get to a point that it doesn’t consume my thoughts everyday. I’m sorry you have some vision loss but your so inspiring and it’s good you only notice when covering one eye. Xx
Charliecat123 in reply to
Thanks Julie….but I’m struggling half the time really. You have to just plod on. I live on my own which doesn’t help. Let’s keep in touch xx
in reply to Charliecat123
Yes will definitely keep in touch. We all need to chat to people with the same condition. May I as have you got open angle and how long have you had it. Are you still able to drive xx
Charliecat123 in reply to
Hi Julie. I have open angle glaucoma diagnosed about 8 years ago. I don’t drive now but that’s my decision as I also have cataracts and dry eye. Xx
in reply to Charliecat123
Thankyou for your reply
Hi Julie
I am glad to hear that your pressures are relatively low now and will be monitored closely. What method does your hospital use - is it the puff tonometry or the other -touch one, Goldmann? and are the hospital consistent in using the same method each time? Do you know if you have normal, thick or thin corneas and does your consultant take any adjustments for that if applicable?
May I also ask you how high were your IOPs when you were first referred to be seen by an ophthalmologist?
Many thanks,
Ella
in reply to Bluella
Hi Bluella my pressure when diagnosed were 34 and have never gone higher since being treated. The lowest was 19 they always use the puff test on me. My corneas are 572 and 565 not sure if that’s thick or not. Thankyou for messaging xx
Bluella in reply to
Thank you for your reply, Julie. I have thick corneas, too so that can add a couple of mm Hg. When I have a puff test it's always slightly higher - nerves? I hate it, tbh - but with the touch one it goes smoother and the readings are lower. I have not been diagnosed with glaucoma but have had a rising IOP for 7 years or so (i'm 59). The last readings were 29 and 24 but when the optician repeated the test a week later she got 24 and 22 so I don't really know how reliable these tests are. It's nice and looks miraculous to have your IOP reduced by 7 mm Hg in one week with no effort. So I will wait and see. Just to give you some re-assurance, I have a friend who is now 85 and has had glaucoma for nearly 40 years. By following the consultants' advice, applying his drops and having had a trab procedure in one eye, he retained his sight and was driving until about a year ago when he finally gave up due to early dementia but not because of his sight. He has led a normal life apart from the inconvenience of having to put up with the drops, occassional inflammation etc. So be of a positive mind and good thought. All the best, xx
in reply to Bluella
Hi Bluella Thankyou for such a lovely message. It is mad how pressures can change. I’m glad you havnt got gluacoma and you get checked. Your friend is an inspiration and I hope I remain like that it just goes to show with vigilance and compliance with drops and your consultant all can remain good. Thankyou again xx
Hi Julie, you must feel so deflated however I am sure with those stronger drops your eye pressure will go down and you can get your laser done. I do feel you have been very stressed, and we all get incredibly stressed when we have our pressures done. You would not believe my routine when I drive to get my pressure test.... loads of deep breathing and mental exercises and of course the whole time I am actually sitting with my fingers crossed when I get the pressure test... and then sitting there praying whilst waiting for the consultant to see me... she now tells me in the hallway virtually as we are walking through as she knows I am anxious....she thinks I am a crack pot I probably am. They will control your pressure as other very experienced people on here have told you.. You are a big help on this site, you are honest about your feelings... we all think this... however other people's tales of their history of glaucoma is very encouraging. take care valfrance
in reply to valfrance
Hi valfrance thankyou for your lovely message. Yes I do feel so deflated at the moment but the positivity from this group is so overwhelming and really helps. I hope the new drops help. I was so worried when consultant said I need close monitoring I went into overthinking bad thoughts. I then thought yes the pressure was 22 and 23 but thank goodness it wasn’t higher and I always think the puff test is a strange one. Hope your doing ok x
Hey honey. You got through another appointment so give yourself a large pat on the back. My pressure was the same, wouldn’t stay down with drops so resulted in a Trab which fingers crossed has worked. Try to keep in mind that they have caught it early and now you are on drops it should stop it progressing. Mine was missed and subsequently I have sight loss. I keep telling myself I’ve been diagnosed a year now & I can still see. I think we were diagnosed around the same time. At least now they are on it and are keeping an eye (pun intended) on you. 😊
in reply to Wales99
Hi Wales99 Thankyou for messaging. I do think yes another appointment gone. I’m just overthinking again especially when he said you need monitoring closely I just always think the worst. I was diagnosed last December can’t believe it’s nearly a year. I just wish I could stop my anxiety xx
Wales99 in reply to
I know hun. Honestly my anxiety was through the roof when I was first diagnosed for about the first 6-8 months. It’s only since the Trab that I’ve calmed down. I had counselling last year, not because of the Glaucoma but mainly for my (many) other issues 😂. It helped me massively. May be worth speaking to your GP? Also, forgive me if I’m speaking out of turn but menopause can give you major anxiety (I think we are a similar age) I’m on HRT now & that’s helped too. Just some ideas for you. You gotta do what works for you. 😊.
in reply to Wales99
Do you know I was thinking the menopause as well. Us woman we put up with a lot. I’m 53. Is yours open angle I can’t remember sorry xx
Wales99 in reply to
Yes we really do. I’m 57 and have been plagued with daily (chronic) migraines since I was 51. I can’t exercise properly anymore because that brings them on as well- I used to go to the gym & run. Now I can’t even go for a walk without getting one 🙄. I have a rare form of Glaucoma- mixed mechanism which means that I have open & closed angle but only in one eye. It was missed by my opticians which is why I have quite a lot of sight loss in that eye. That isn’t helping the headaches right now because I still have a stitch in from the trab which is causing astigmatism so I can’t get new glasses until he removes it & my prescription has definitely changed they said. I’m seeing my consultant on 8th December & praying he takes it out then 🙏.
in reply to Wales99
Oh bless you. Migraines are not nice I don’t have many but have had a few my partner suffers with them though. Your gluacoma sounds complicated. I hope your trab comes out in December. I suffer badly with dry eye which makes my eyes blurry and then it freaks me out because I think it’s the gluacoma so off I go to eye emergency to be told it’s dry eye. X
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