Would you know if your pressures were high with open angle Thankyou just thought I’d put a face out to you all as well 😂
Pressures : Would you know if your pressures... - Glaucoma UK
Pressures
78 Replies
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Do you mean on a day to day basis?
• in reply toJennymary
Hi jennymary I mean occasionally. I feel I might be getting confused with dry eye but my eyeballs feel hard on top of the lid. I’m guessing I’m overthinking to much
Hi Julie, you actually look like I would have imagined. Love the diamond ears and nose. 😁 I had narrow angles prior to my cataract ops and I had constant low grade headaches with pressure of 27 but I'm not sure if it would be the same with open angle.I take it you are still having bother with how your eyes are feeling ? One of the most frustrating and worrying aspects of glaucoma is not knowing our eye pressure and if the drops are actually working. Everything hinges on what our pressure is. If your eye is feeling odd it obviously makes you more likely to worry and feel scared. It could just be your reaction to the drops, it's the not knowing.
Do you go back to see your consultant soon ?
Take care x
• in reply to
Thankyou for your kind reply. I hope you are well. I think I just overthink everything and last time it was dry eye. Xx
• in reply to
It's easy to overthink things especially when it's something as important as your eyesight. I'm good, I've been soaked twice today walking my dog, as weather has been totally awful and I'm just about to venture out for a third time and hopefully might get home dry 🤔 x
Let me add this to the discussion, my pressures have almost always been between 10 & 15, on one of my many visits to A & E, my left eye where I'd had the cataract done in was 19 which freaked me out, person I saw said it was fine, but left eye was always slightly higher than the right, one visit to outpatients I asked the consultant, as my pressures have always been between 10 & 15, now its always slightly higher, has having the cataract done changed the make up of my eye, without a word of a lie consultant looked and said I don't understand the question!!!!!
• in reply toJennymary
Oh my goodness that's certainly very concerning and I'm glad he's not my consultant 😱.
Jennymary• in reply to
In August 2017 at another appt, I asked the same consultant if I was OK to drive, my own common sense said I was borderline. The reply was, when you can read a number plate at the required distance so when weather conditions are good you can drive, but not when weather conditions are bad, I stopped there and then not because I was a bad driver but because I was a sensible driver
• in reply toJennymary
You are making me laugh, he certainly sounds unique and not in a good way. 🥴
Hi JulieBookworm, i have open angled glaucoma, diagnosed with glaucoma in january. I just visited my opthalmogist yesterday as like you I get mild headaches and eye pain. She was the first one to tell me its the medication. I take monoprost and to take dry eye drops, make sure you take preservative free drops I take thealose.
I recently had SLT surgery 6 weeks ago, i was taking 2 drops monoprost and alphagan. I am currently taking 1 drop now monoprost for 2 weeks and I am seeing my consultant this week, hopefully I will not have to return to taking alphagan also. My pressure has gone down since the surgery.
Maybe ask your consultant if you are a candidate for SLT as you have recently been diagnosed. Ask early as the longer you take the drops the results of SLT are not as good. SLT is not painful and takes 5 minutes. Read my post on SLT and there is information in there on the research on SLT. valfrance
• in reply tovalfrance
Thankyou for your kind reply I was told before that it’s dry eye but you still can’t help worry can you. May I ask how old you are. I’m 53 was diagnosed in December last year. So so scared of going blind. I was told alt they prefer to leave till you are older but I don’t know why. Thankyou again for the message x
valfrance• in reply to
healthunlocked.com/api/redi...
Hi Julie please read this if you are eligible for slt please push for it. I am 63, a virgin eye gets better results with SLT than long term use of eye drops. As you have just been diagnosed I would really think about it.
The above link was sent to me by the administrator here when I posted about my SLT treatment. In my post I have other research done young people tend to want SLT and not take drops and older people are frightened of SLT and choose the drops.
If you doctor says you are too young, then why are young patients immediately offered SLT in the research.
Therefore, SLT should not be based on age and when you should get it. Its a choice from the patient, suitability from the doctor's point of view and awareness by the patient of this option. Let's face it when you are given the diagnosis you are frightened of going blind and if the doctor said stand on your head 3 times a day you would do it.. Therefore when he hands you drops for your eyes you take them... SLT does not affect your eyes if you have to take the drops only again in the future. I guess how they are looking at it is cost to the NHS, however the research shows it would be cheaper for the NHS to initially try SLT first over giving out eye drops for any age group. It is a 5 minute treatment by a laser, you are not in an operating theatre.
SLT is not permanent you can repeat it 3 times.. some people it lasts 2-3 years.. my way of thinking is that if mine could last 3 years (saying prayers every day) and I can have it repeated that would give me 9 years without 2 strong drops in my eyes every day.
Read my post on SLT and I have explained everything in there. The research currently being done by Moorfields is very interesting, I think in the future they will immediately offer SLT to suitable people before giving out drops. I live in France and I have a very open minded glaucoma surgeon/specialist. If I was you I would print the research and give it to your specialist and if with your eye condition you can have it and you want it tell him you want to give it a try. valfrance
• in reply tovalfrance
Thankyou so much I definitely will talk to my doctor about it x
• in reply tovalfrance
I’ve just read the link it’s inspiring. I’ve got an appointment in June so will definitely ask then Thankyou for chatting to me x
valfrance• in reply to
Hi Julie any time, the worry is hell and not knowing the best thing to do. I think I am a bit like you I worry too much. I wake up every day and its the first thing I think about.
You have open angled glaucoma therefore you are a candidate for SLT. Your doctor did not say that it was not suitable for you he just said you were too young... so take in your research printed and don't take no for an answer if you are suitable and you want it.
I am also trying natural supplements and food groups. I have no idea if its working I am just going on research. I am going to post what I have discovered shortly and have it in this site under a heading of Health Supplements and Glaucoma I found a really good link to information.. You can go all over the web looking at everything. take care valfrance
• in reply tovalfrance
Your amazing Thankyou. Please keep in touch. I’ve posted again on here my whole diagnosis have a read if you wish. I so appreciate everything today. Thankyou x
Hi I believe that I can tell though I agree with the person who said it can get confused with dry eye. I get headaches and occasional ocular headaches that was visual disturbance as well but mostly I can see the eye pulsing because it slightly disturbs what I am seeing. I had pressure of 32 which decreased to 24 and since the new eye drops I haven’t seen the pulse in the eye and no headaches.
• in reply toSufitzy
Hi I don’t get headaches just a heavy feeling and sometimes blurred vision. It’s just so scary x
Sufitzy• in reply to
Hi yes I was scared too but remember you can alway call you hosp clinic or go back to you option for a pressure check. I have done that a couple of times , in fact it is what got me reviewed early and my initial closed angle glaucoma diagnosis and treatment . And it’s what got me back to the clinic a couple of years later where I found out I have high pressure but no damage significant enough to be classified as glaucoma. So the fact that some folk like us can sense something is different is ultimately a good thing because we can get seen earlier . I think we are possible the same sort of age and probably like me that’s scary too because we are relatively young for this . But we are in the system so That’s a protective factor. X
• in reply toSufitzy
Ahh Thankyou again. Have you got gluacoma how high have your pressures been. My highest was 28/30 but my visual field was very good apparently that was in December last year. Went to hospital a and e because I felt heavy eyes in January and pressures were 19 and she said I had dry eye and I asked how bad the gluacoma was and she said we can control this. Still I couldn’t get blindness out of my head. Then in March my appointment with nhs was cancelled due to Covid so I panicked and went private. I was on Lantanprost at this time one drop every night. Private doctor said pressures were 20/24 so put me on Fixapost instead of Lantanprost one drop 7am every morning. Told gluacoma had started. Have thick corneas which I’ve heard is good but optic nerve was 0.7 and 0.8. Which scared me and anterior chambers were deep and quiet how they should be. Next appointment June 13th. So so scared still. Sorry for long message. X
Sufitzy• in reply to
Hi they say I have high ocular pressure and we are treating prophylactic but I am confused with the disc figures and didn’t ask much about them. I was treated successfully for closed angle glaucoma and the on for a year or so but then pressure went up to 28 and 32. Latanaprost brought it down to 18and 24 so now I am on latanaprost and timolo.
Disc 0.6 and 0.5 but don’t really know what that means . Visual acuities 6/5 -2 and 6/5. No idea what that is either .
Lord I sound daft now but I was just happy the pressure were down.
Sx
• in reply toSufitzy
You don’t sound daft at all. I’m not sure what it all means either x
Sufitzy• in reply to
We are being treated though and the pressures are falling . Sorry you had to go private. But sounds like it was the right call. I guess from your user name that you love reading . That’s one of the things that got to me the most. All the books I was planning to read when I retire . It really made me think of making the most of life and stop just planning so I have changed work so I only work 4 days now so I have more time to do what I want to do.
Hi Julie, another over thinker here!! I went for my first appt in April IOP L32 and R23 so now on monopost at night and a review in June to see if any change in pressures. I have been told i have preperimetric POA glaucoma. Google tells me it is also called early glaucoma. My visual fields are not badly affected yet. I am 57. But since then of course ..every time my eye feels remotely weird , dry, teary, you name it.... I fret. What does this mean??? i would like to have a little pressure gauge in my eye to tell me if things are going in the right direction. Sorry not much help to you but much empathy as we are at very similar stages in this journey.
• in reply tosewquilt3
I completely get where you are coming from. Does yours run in the family. It’s never been mentioned in mine and sadly my parents are no longer with me so I couldn’t ask. I do google a lot as well which is never good. Keep in touch on here Thankyou for the support x
Hi Julie. My mum has 'normal pressure glaucoma' and is not short sighted like me. So not quite the same but it ticks the 'family history' box so increases my risk apparently .i know one of my granny's (Mum's mum) cousins had it too but that gets much more distant.
Its useful to have this group , helpful people further along their journey here to ask things of.
Trish_GlaucomaUKPartner
Hello. As your blurred vision comes and goes and you have a heavy feeling it sounds more like dry eye. Use your dry eye drops as often as you feel you need to. A warm facemask which you can warm in the microwave can also help. The heat will stimulate the lateral oils in the eye and help soothe and lubricate. Another option is to soak a clean face flannel in warm recently boiled water and place this over your eyes. Make sure you drink plenty of water (up to 6-8 glasses) a day. Also eating oily fish 2-3 times a week also helps. We have also been told by some patients that taking an Omega 3 capsule helps. SLT is now looked upon as an option for newly/early diagnosed patients with glaucoma but not all. Every patient is different so treatment differs from one to the other.
• in reply toTrish_GlaucomaUK
Thankyou Trish for the message. My eyes are ok today. I’m slightly worried I’m not being offered SLT especially if it doesn’t work well after drops have been used for a while. Thankyou again for the message x
Hi Julie. You look exactly as I imagined you 😊. I can feel my pressure- my eye feels “lumpy” if that makes sense. I too have headaches and they are worse when the pressure is high also get worse with exercise which is how this whole thing started. Took me 4 years to get a diagnosis. The eye pain can be dry eye & mine definitely improves with the Hycosan (dry eye drops) I have both open and closed angle Glaucoma in one eye. Waiting for Trab surgery on 3rd June which I’m told is the best option for me with the type of Glaucoma I have. Hope you feel better. 😊
• in reply toWales99
Ahh bless you. Thankyou for messaging me. Mine feels hard on top if that makes sense and sometimes sore. I’ve been told I should be offered slt but doctors have not said anything about that and apparently it doesn’t work as well when you’ve been on drops for a while so it’s worrying me now. I’m not in a good place at the mo again keep thinking of going blind x
Wales99• in reply to
Bless you. It is so hard. I go up & down like a yo-yo! The trouble with forums is that everyone has an opinion and a different story. We are all on our own journey. The best advice is to speak to your consultant he/she has the medical knowledge & expertise - not Dr Google! 😂. Have you tried ringing the RNIB helpline? I think they have counsellors who can talk to you about how you feeling & hopefully reassure you. I think your eyeball is meant to feel hard at the top of your eye isn’t it? If it was soft & spongy it would just fall out 😂. It’s easy to say try not to worry (if only it was that easy) but is there anything you feel you can do to take your mind off things? Xx
I was registered blind October 2017, telephone counselling with RNIB happened April 2018
• in reply toJennymary
I remember you saying to me and how amazing you are with the things you do xx
• in reply toWales99
Thankyou for your kind reply. I think your right your eyeball should be hard like you say. I’m going to try not to worry so much x
• in reply to
Hi Julie I've just been pressing my eyeball to see how it feels and it's solid but with a bit of give, if that makes sense. I assume that's how it should feel. I am sorry to hear you aren't in a good place just now, having so long between appointments doesn't help as you have no idea what your pressure etc etc.
I've just read Wales99's reply and I do agree with her, we are all individuals and not every treatment will be universally suitable, such as SLT being unsuitable for me Until you do see your consultant again you won't really know what is and isn't suitable for you. Hopefully he will tell you what his actual treatment plan for you is.We also all respond differently to the treatments, I see others on here who have pressure of 8 or 10 after a trabeculectomy whereas mine is 16 😱.
Its difficult not to worry at times, my son is due his first eye test since I was diagnosed with glaucoma and I am scared he will also have glaucoma. My partner is being logical about it all and though I know chances are my son will be fine ,I won't be happy until he phones me on Wednesday and tells me himself. So we do all get scared and it is hard to be positive when you aren't in a good place. I do hope you start to feel better soon Julie x
Hi Thankyou for the lovely reply. Yes my eyes feel like your description so maybe it’s normal and I’m overthinking again. I will ask more questions this time. I have 2 sons one is 31 and he’s been for a test everything was fine not even glasses my youngest is 29 and he hast been yet but I keep telling him to go. I was also worried like you. It’s not something you want your children to have. Fingers crossed he will be ok. I just keep thinking that it’s more common in woman so hopefully they will be fine. Keep in touch and let me know. Thanks again for always being here with such kind messages xx
• in reply to
It's difficult not to overthink at times that's why I workout as I concentrate on that instead and I walk with a friend who never stops talking so no time to think then either 🙂.My son is 26 and is short sighted and has worn glasses since his early teens and feels his vision has changed but I do know it is unlikely he has glaucoma 🤞. Still worrying about our kids is a mum thing and I've been nagging him to go and get his eyes tested. Thank you for understanding though.
Definitely ask more questions at your next appointment as I think it does make you feel a bit more in control. Initially when you are first diagnosed I think shock takes over and it's difficult to think of a single question. My partner now makes sure I have all my questions written down before I go into clinic and it helps me. My consultant in all fairness explains everything very well and from the beginning he let me know his plans for me, which have been adapted as time has gone on. He also asks if I have any questions and answers them all, no matter how daft they might seem to him.
We are all going through the same thing just in different ways so it's great to have others who understand. X
Your right we never stop worrying about our kids. That’a good idea to write the questions down I will do that. It’s just overthinking that I do and google which I have to stop to x
• in reply to
Definitely no googling x
Definitely will try to stay away from Dr Google x
• in reply to
My son just phoned and no glaucoma, they checked his pressure and all is good. 😁. His left eye is pretty much the same as last test but his right eye has deteriorated considerably and so he will now receive an eye test every year. Hopefully he will never have glaucoma but if he does at least now it should be picked up early. X
Wales99• in reply to
That’s really good news. My daughter is 20 and at Uni. I’ve told her to be aware (although I’ve been told you’re not at risk until you’re over 40 which is rubbish because I know of people diagnosed in their 30’s). She - my daughter just nods & smiles in a “yeah mum” way 🙄. Oh well you can lead a horse to water. I really hope I can get back to working out after the op & recovery. I really miss the gym. Yes Hidden def stay away from Dr Google!
• in reply toWales99
It is good news thank goodness 😃 and he goes to a small independent opticians who are really good. I've been going on at him for ages to get his eyes tested as he was squinting at everything even when wearing glasses . You don't want to put your fears onto your children but they definitely do need to be aware . How are your eyes and you in general feeling ? Fingers crossed you will be able to workout again as I know how much I miss it when I can't, I'm probably a bad tempered moo !!!! I was told I could workout again after 4 weeks but I waited till 6 weeks as my partner wasn't happy with me doing it at all. I also started off really easily so it would have been 8 weeks until I did go back to my usual workouts. X
Wales99• in reply to
Ah thank you for asking. My eye doesn’t feel quite so bad now I’m on all the meds & I’m just philosophical about it now. I need to have the op & although obviously not looking forward to that or the recovery, I’m feeling positive about it. I can’t exercise (well I can - my consultant says it’s OK) but I get awful headaches when I do. Really bad - having to lie down bad. I’m hoping that will stop after the op but if it doesn’t, I may have to re-think my exercise regime. Hope all is OK with you now - have you got another appointment soon?
• in reply toWales99
Yeah I do think you get to a point when you are more pragmatic and accepting of it all but all going well after trab your life will go back to normal. I wouldn't exercise either if I was having headaches regardless of what consultant said. I have adapted my workouts which is fine but there are certain exercises I just don't feel confident doing anymore.I have another appointment in July so I will find out then what my pressure is and if consultant is happy with it or not and take it from there. I would obviously it to be 14 in both eyes but possibly not. X
• in reply toWales99
I know what you mean about your daughter my youngest son is like that about it. I’m sure you will get back to the gym. X
• in reply to
That’s fantastic news. I just want my youngest to go now. He’s a nightmare. I will keep on at him though x
• in reply to
It definitely is and I'm so glad he will get yearly checks now too. Definitely try and get your youngest to go but boys ( of any age) are particularly stubborn, How are you feeling today ? X
• in reply to
I will definitely keep on at him. I’m not feeling to bad. I just hate the thinking of going blind and it consumes me a lot. Somebody said there was a link on here that I should read about how almost 97% of people don’t lose their sight but I can’t fine it. I think I worry more because of only being 53 and it’s young and no disrespect to anyone with sight loss but most articles I read say because it’s an older disease people will not have sight loss in their lifetime but with our age I feel it’s more likely. Oh god listen to me I’m real doom and gloom aren’t I . So sorry. How’s you today. Xx
• in reply to
I'm glad you hear you aren't feeling bad today and you're not doom and gloom, I do understand exactly where you are coming from ,although obviously being diagnosed with glaucoma at any age is a bit of a shocker . I take hope from everyone on here who has had glaucoma for 20 plus years and although may have some vision loss they do still have their sight. I was terrified in beginning too and truthfully although I do think the chances are I might lose some more vision I really don't think I will lose it all ( I will be in for a nasty shock if I'm wrong) 😱I haven't read that article but certainly I would be interested in it too. I think we just have to hope for the best.
I am actually in total agony as I lost my footing on gravel fell and landed on my behind.I've hurt my back,shoulder and neck. I'm doing stretching exercises but I cannot sit down for any length of time. I am the clumsiest person I know. Apart from that I'm great by🤪 x
• in reply to
Oh I definitely agree being diagnosed at any age is awful and obviously the fear is still there. How long did you say you have it I can’t remember sorry. There are definitely a lot of people on here who like you say have had it for over 20 years and still their sight is good. Fingers crossed for us. Did you have the slt treatment It’s the not knowing how your pressures are doing that I worry about. I’m so sorry you fell over. I also had an accident at work this week. Slipped on some water. No wet floor sign there so didn’t see the water because I don’t walk looking down at the floor. Apart from looking a fool and a bruised backside I’m ok . What are we like 😂 Oh dear x
• in reply to
Ouch so both of us with bruised egos and backsides this week 😣. The younger you are diagnosed obviously the longer the consultant has to try and stop vision loss, it also depends how early you are diagnosed and how well you respond to treatment.I was only diagnosed 2 years ago at 57 but I failed a field test 7 years ago(ish) at age 52 and nothing was done about it. They just said oh everyone fails their first test. I didn't like their manner and changed opticians and he never gave me a field test, so it was only when I again changed opticians to an amazing all female team( no offence to male opticians) 2 years ago I was finally diagnosed . I unfortunately by then had lost a moderate amount of vision as my consultant puts it in my right eye and a mild amount in my left.
I had 2 cataract ops first as I had narrow angles and that opened the angles up. I am not a great candidate for SLT and that's why I had a trabeculectomy. I agree not knowing what you pressure is doing makes things worse.
I have a dandelion tattoo on my wrist and the stem has the words " without hope there is nothing" and so I do always have hope. X
• in reply to
Yes we do have bruised egos 😂. You sound like you’ve been through a lot and come out the other side. Amazing. Love the tattoo. I absolutely love tattoos. I have 6 always want more. Rebels in our 50s 😂 xx
• in reply to
I think we just would all do anything to try and keep our eyesight.I have 3 tattoos and once things are more settled I am definitely getting at least one more . I also still have my belly button piercing in from 30 years ago !!!We are definitely rebels 🤪. X
Wales99• in reply to
If you put sight loss or something into the search bar it might come up. I would be interested to read it too. I’m the same as you - I’m 56 & was diagnosed last October. This is why my consultant is doing a Trab - to stop it progressing given that I’m relatively young (don’t feel it some days!) my cousin was diagnosed in her 40’s. My mum had it - only ever had cataract operations & didn’t really have problems with sight loss until her late 80’s and her Glaucoma was diagnosed late. By the time we get to 80 they will have found a cure for it! Sorry to hear you had an accident at work- hope you’re OK.
• in reply toWales99
Yes that's why I had a trab too my consultant told me he was hitting the glaucoma aggressively because of my age . That's positive your mum was in her late 80s and was diagnosed late, I will hold onto that thought. My partner says we will have eye transplants by then, although I am not sure I want someone else's eye as I have watched too many horror films where the body part ends up evil etc !!!! X
• in reply to
I’m the same eye transplants but I’m sure there will be a cure soon. X
• in reply to
I would like to think there will be x
Wales99• in reply to
😂 you sound like me! I watch films like that & read far too many books about serial killers. On a serious note I did read recently that one of the sight loss charities had managed to find a way to repair the optic nerve. Still all in trial stages of course but it’s a step in the right direction. Well they can do cornea transplants now so who knows.
• in reply toWales99
Yup a good old horror film or serial killer book my idea of fun 🤪. That's a definite step in the right direction and it would be marvellous if they perfected it before we are all too decrepit !!! My partner's cousin he had a cornea transplant years ago and it worked out fine for him although I must confess I found it really creepy at the time. I agree with not comparing yourself to anyone else on here, we are receiving our treatment based on our individual set of circumstances.
Take care too x
• in reply to
I just said to wales99 how much I like reading usually martina Cole and Kimberley chambers then go the other way with old fashioned books like the Woolworths girls must admit do like a horror film to. Let’s hope they get the optic nerve thing sorted in our time. You two ladies have been brilliant to me Thankyou x
• in reply to
I love Martina Cole and Kimberley Chambers too, as well as outright gore like Richard Laymon and yes old fashioned books too. I basically just love reading and always have a book on the go, just now I am reading Discovery of Witches " trilogy as I am drawn to vampires 🧛in particular. Thank you but I think we have all helped each other x
• in reply to
We seem to have reading in common and similar taste in books. I also like the series Penny Dreadful if you havnt watched it it’s really good. The actress Helen Mcgrory who died recently and she plays an amazing part. X
• in reply to
Yeah we definitely do, I haven't seen Penny Dreadful yet but I will add it to my list. I've seen clips and it does look like something I would enjoy.I liked Helen McGrory I've seen her in a few things and she was always really good. X
Wales99• in reply to
Oh goodness yes I love anything to do with vampires. Did you watch A Discovery of Witches? It was on Sky recently- really enjoyed it. Hidden yes watched Penny Dreadful & absolutely loved it. Oh yes that was sad about Helen Mcgrory.
• in reply toWales99
Yes I binge watched both seasons and loved them , I was actually reading the books and watching series at same time. My ultimate vampire is Eric the Vampire from True Blood, I completely loved him. X
Wales99• in reply to
Me too! Ooh yes. Really enjoyed True Blood as well. 😊
• in reply toWales99
I need to watch Discovery of Witches 🧙♀️ x
• in reply to
It is really good and the books are amazing, I actually binge watched both seasons in about a week whilst also reading the books 😁 I have just ordered Deborah Harkness's new book as I am obsessed. X
• in reply toWales99
That’s really good about your mum. I wonder if my consultant will do something like that for mex
Wales99• in reply to
I’m sure your consultant will take the best route for you. It sounds like yours has been caught very early & you don’t have any damage to your optic nerve. I have quite a lot of sight loss in my right eye & my pressure isn’t being controlled by the drops. Remember that we are all on our own journey. When I first came on here I used to compare myself to everyone else & panic & get depressed because my consultant wasn’t doing this or that. I don’t do that anymore- comparison is the thief of joy! Take care - no more falls ladies. Look after yourselves 😊 x
• in reply toWales99
Ahh Thankyou so much. I also love reading. Martina Cole and Kimberley Chambers are my choice of books. They are more Gangland London. Also like to go the other way with books about the ladies left behind during the war. Things like the Woolworths girls and buttons girls. Love a good horror to. X
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