Hi everyone I’m really sad after my post I put on a nd all the lovely messages I had from you all it lifted me but I’ve just read to private messages from someone this site and they are saying because I’ve had 3 visual field tests I’m in a critical stage with my gluacoma and that’s why I’ve had these tests because the damage is happening so quickly hence the laser and I’m now at end stage gluacoma. I know I’m being really silly listening to this person because my consultant has not said this at all but it’s now put me in a very very bad place. My visual field has you all know has not shown any loss in all three tests but this person is saying they will see it on the OCT and I will have very bad retinal and optic nerve damage which again I havnt been told but this person says that’s why I’m getting laser but it’s probably to late at my end stage. I have replied nicely to first message but they still come back at me with I’m not in a good place. They will see what I’ve posted and I’m absolutely distraught. Sorry if I’m not meant to post this but I havnt named them. I just feel so ill now and anxious. Sorry everyone
Very upset : Hi everyone I’m really sad after my... - Glaucoma UK
Very upset
Hi Julie
Sorry to hear about your glaucoma problems.
Last year, whilst looking up ‘high eye pressure’ for my wife, I found Mirtogenol on Amazon USA and this herb had extremely positive reviews, so bought some for her and it’s helped.
All the best
Alps
Hi Alps, please tell us more about Mirtogenol, it sounds very interesting! I’m so glad to hear that it has helped your wife.
Hi Cam
My wife had 'raised eye pressure' with readings of 21-22 so was given drops to try.
However, the drops had a lot of side effects, that she didn't like
So, I looked for an alternative and found Mirtogenol on Amazon.com
(It's now sold here in the UK)
And was very impressed with the reviews, so got some for her to try
And her readings are under 20 now
All the best!
Alps
Hi Thankyou for your message I appreciate it but I would rather stick to what my consultant gives me rather than something from Amazon. If consultant have it to me all well and good but not going to just do my own thing without professional advice. Thankyou though
Hi Alps Thank you for sharing the information about Mirtogenol. I've found some research papers on its efficacy in lowering IOP, one supported by a grant from the manufacturers of Mirtogenol. However, other studies were independent. ncbi.nlm.nih.gov/pmc/articl...
clinicaltrials.gov/Provided...
Since the main ingredients in Mirtogenol are bilberry and the French maritime pine bark extracts and are available over the counter as food supplements I am tempted to try it. I have not been diagnosed with glaucoma yet but have high IOP of 21/24.
I wonder if anyone else of this lovely community has used Mirtogenol and with what effect? Please share your experience if you have.
Kind regards,
Ella
Julia if I was nearby I’d give you such a big hug!!!!! Only your consultant can tell you what is happening to your eyes! We can all share experiences and accounts of what is happening with our eyes BUT we are all different and really different! If u were in imminent danger of losing yr sight you would be seen almost immediately! I was upset when I was told I would have to have an emergency cataract op within two weeks of seeing my consultant. I was terrified however I needn’t have been, the team knew what they were doing! Please talk to your consultant or at the very least the consultant’s secretary and share your fears! Get the information on your eyes from the horses mouth as it were! You have a right to know! I truly believe they would have called you sooner if there was a need, like I said the day I was diagnosed twenty years ago I couldn’t leave until I had had laser treatment on both eyes! So Julie take action, a deep breath and phone your eye clinic! Let’s us know what they say. Big hugs xx
Oh sunshine Thankyou so much you have been through loads and are an inspiration to all of us on here. Your right my consultant wouldn’t of just sent me away. Now this person is telling me I’m at end stage. I would never say anything like that to anyone. Can I ask please have your children got gluacoma I worry so much for my sons xx
Hi Julie, just remind yourself you would never tell anyone that they are at the end stage! So what right had this person so be strong and like I said get it from the horses mouth 🤣I have one daughter and she is checked each year, so far so good! I’m cutting my lawn, getting as much of my garden done before next week, need to clean house and get shopping in then I’m ready we’ll as ever I will be for the op! My daughter is going to pick me from hospital and bring me home, then she is going away, so a little nervous but I’m sure I’ll be ok! That’s when I’m so grateful to have you all for support. I’ve put the biopsy right at the back of my mind, sometimes I think I should be more worried about that. My motto is one day at a time, living in the moment so today weather is great, I’m ok, busy in garden! Here to chat at anytime! We will be ok Julie! It’s a tough path however we can do it, one step at a time! xx
Ahh bless you sunshine. I’m currently changing beds as don’t want to be doing it at the weekend because weather looks like it’s going to be good. Yes this person was awful saying I must be at end stage if I’ve had that amount of visual field tests my consultant never said that at all. I really hope I can be like you 20 + years with the condition and still doing everything. I hope the op goes well for you. I will chat before then. Thankyou for all your support it means a lot xx
Wishing you loads of luck for next week. I know you will be fine and once it’s over and you are feeling up to it I will see you at the Sea Horse! xx
Thank you so much Redshoes! xx
Hi Julie, from my understanding of laser treatment it certainly does not mean what you have been told by your private messenger. As Sunshine 88888888 says contact your consultants secretary who will be able to give you the correct info about your eyes. Lots of love. x
Thankyou so much xx. I never seem to see the same person but they are all so lovely and he wa happy I had 100% visual fields xx
Pleased to hear you had full visual fields. I had a call from the eye clinic yesterday to book me in for my first cataract op - obviously worried. It is going to be happening on July 25th at the unearthly of 7.45am! Going for a pre-op this coming Tuesday along with various tests, measurements etc. Don't know what street lens they will put in, I have been told either distance or reading are the options. I was hoping for something similar to my normal sight as I have been reading for years without specs. However I also have bad astigmatisions (I know that is not the correct spelling!) so will have to se what they say is best.
Oh bless you it’s so scary isn’t it. I’m sure everything will go well but I know how you feel. I’m guessing it is good to have 3 visual field tests and they were 100% I hope it’s good even though pressures were 25/30 which is scary x
Thanks. When I went a few weeks ago apparently the pressure in my eyes was 38. However I have extra thick corneas and apparently if one has those higher pressures can be tolerated. Have to hope the eye drops have lowered the pressures now and that the cataract ops lower them even further. x
Julie I am beyond shocked that someone should say this to you and I agree with Enigma they should be reported and removed from this site. I agree with absolutely everything Sunshine and Enigma has said to you. Lots of Love x
Thankyou so much I really appreciate all your messages xx
Hi Julie
Someone has obviously picked up on your vulnerability and said these upsetting things to you. From my experience as a glaucoma patient since 1994 you would have been told if there was any imminent risk to your eyesight and treated accordingly.
And I`m sure that if you have had three good field tests that everything is ok.
Stay strong. Sending hugs.
Lynne xx
Thankyou so much for messaging Lynne I keep telling myself that I would of be told and I know deep down I would have been. How’s everything with you you’ve had glaucoma a long time is it open angle do you still drive I think I may of asked you before. How old were you when diagnosed xx
Hi Julie, I've literally just got in from work I'll give a more detailed message later, but assuming the person concerned has no access to your medical records they're talking rubbish, take no notice, and if they had access to your medical records they shouldn't have messaged you due to confidentiality issues xxx
Hi Jennymary no they have no access to my medical records I don’t really know why they said all this to me I’ve never seen them on here before or messaged them it’s very upsetting x
Hi Julie
My Dad had glaucoma so I knew I was at risk from when I was about 33. I`m not sure what kind of glaucoma my Dad had - at the time I didn`t even realise that there are different types. So when I reached 40 I started to go to the opticians (that was the age that was recommended at the time).
For seven years I was told that I was ok then when I reached 47 in 1994 another optician referred me to the hospital and the day after I had iridotomies in both eyes. Not knowing much about glaucoma I just accepted that that was done and I was ok. I can`t remember being worried about it at the time.
From then on I had regular checks at the Eye Clinic and managed without drops until 2011. It was only around that time that a new consultant said to me that I had a different kind of glaucoma but didn`t say anymore. Anyway it turned out that I have narrow angle or angle-closure glaucoma which means I am at risk of an acute glaucoma attack.
So seeing how well I`ve done over the years I assume that the iridotomies did the trick.
I have had a couple of changes of drops - first one I was on was Latanoprost which didn`t work for me so was changed to Lumigan (Bimatoprost) and then in 2018 was changed again to a combination drop (Ganfort (Bimatoprost and Timilol). And I go for checks every six months.
I think I`ve said to you before that my vision is still good - not quite so good in my right eye because in 2011 I had to have a macular hole operation (nothing to do with glaucoma) in that eye and the surgeon did the cataract at the same time which he said would also help with drainage from that eye. So I`ve just lost a bit of my central vision in the right eye and things look a bit distorted.
But now at 74 I feel very happy to be where I am now. And yes I can still drive although I don`t drive as much as I used to - mainly leave that to my husband.
You also mentioned earlier that you`re worried about your two sons which I fully understand. But as long as they go for regular checks at the opticians and if necessary get picked up early I`m sure they can look forward to a good future. And quite possibly they could be ok anyway. My son who is now 53 has been going for regular check ups since he was 40 and so far he is fine and my sister she is ok too.
The person who sent you that message obviously wasn`t brave enough to post on the main page and in my opinion is talking a load of rubbish. So take no notice.
Love Lynne xx
Oh bless you Lynne your remarkable all what you have gone through. Your right about that person though they didn’t want to do it openly. I hope they see that I’ve had a moan now about them. Xx
Hi Julie, I would pay no attention to this, sounds like someone trying to cause you unnecessary worry and stress - a bit like all these scammers! You are obviously in good hands so don’t worry and enjoy the sun xx
The fact they sent a private message says it all as no one can respond to it apart from you. Ignore them , you are doing ok, getting seen and getting treated and nothing out of the ordinary is happening for you, SLT are a common procedure . Your VF have been great , they do VF and pressure checks , your hospital is one that is keeping a good eye on you , try not to let this persons views upset you .
Have a look on here at the videos / podcasts I have found them to be very reassuring and informative . X
Hi Julie, I've just sent you a message 🤗
As you know Julie, I was born with glaucoma, lived with it all my 58 years but I have NO MEDICAL QUALIFICATIONS, therefore I'd never pass judgement that person x on this forum will go blind but person h won't, because none of us knis
I'd be interested in how this person's defines blind, to the best of my knowledge 96% of people registered blind have some degree of vision, I would say the chances of any of us going to bed tonight and waking up tomorrow to a world of darkness are extremely slim, I'll guess here it may happen to 1 in 5 million people but that's purely a guess pulled put of thin air, we know with some of the awful accidents that happen from time to time people may lose vision but keep a small bit, so maybe report the message to our Admin team, I see Trish_glaucoma has messaged you and then delete it
With regards family my mum had 3 children brother and sister now aged 61 and 51 haven't developed Glaucoma despite having a mum and sister with it
Thankyou for your kind message I have private messaged Trish and she actually knew who it was and apparently has done it before so she’s sorting it. I know that gluacoma blindness is rare in 97% of people it says that in the gluacoma uk website and you yourself are an advocate of that very inspiring so I Thankyou again for being so kind to me xx
In a strange way I've been there, someone I've known since my school days thinks I can see the nose on my face and nothing else, my mum had dementia for the last 3 years of her life, and spent her last year in bed 24/7 didn't eat drink or talk and was unable to recognise her own family, and this person I've known couldn't wrap her head around that, so I know how ignorant some people can be
That’s awfulI really don’t understand how people can be so cruel xx
You really have to wonder about people and it's worse when it's someone you've known for such a long time.
Definately, she's someone who doesn't cope with any health issues, if she wasn't the mother of my god daughter I'd cut all ties with her, but she's certainly wrecked the friendship we had
I would struggle to maintain any form of friendship with her, you are obviously a much more forgiving person than me. There is no excuse for her behaviour but as you say she's your god daughter's mother. Apart from anything else it must be really hurtful.
I will never forgive or forget what she said to me, at the time I was mentally, physically and emotionally exhausted and someone with no. Knowledge of sight loss said what she said (I won't publish what she says because I don't want anyone else to be offended by it)
She's clearly a very thoughtless person who is very lucky to have you still in her life, as she certainly doesn't deserve it.
Oh honey that’s all you need. Report them. You can report them to the admins on this site. Also block them if you can. What they’ve said is absolute nonsense and as others have said your consultant is the only one who can give you a professional medical opinion as he knows your specific case. I was on another forum on this site for running & got stalked by a very creepy person. I reported it and they sorted it really quickly. These types of forums attract people like that, they’ve read your posts and know that you’re worried so they prey on that. Makes me so mad! 😡. Hang in there & PM me if you want to chat - or message me on Facebook messenger. Xx
Hi Thankyou for your message. I did report it and Trish dealt with it. I will message you later I’m just off out xx
Aw Julie, what a horrible thing to do to you. I am really really shocked. As well as mean they are clearly stupid too. The fact you have had three perfect visual fields is wonderful and as far as I have been told indicates that you have not incurred any damage. You are getting laser because you are early on fortunately and this will improve things for you greatly. Again, I cannot believe someone has done this but please rise above it, they are cruel and misinformed. Stay strong xx
There is more than one type of laser treatment. SLT which I think is what you are looking at is. Is as far as I am aware used by the NHS for early mild glaucoma treatment. There is a different laser treatment which may be used in the treatment of advanced glaucoma. glaucoma.uk/about-glaucoma/... this page above and it confirms what I have said. You know you are not at end stage glaucoma because a) you can see and b) you haven't had any other surgical treatments. When discussing laser treatment people need to be more accurate. Unfortunately whoever it is has got confused. Not everyone who tries to help knows what they are talking about.
Thankyou for your message I appreciate it but this person was not confused just nasty because of the other comments I got to but Thankyou for messaging x
Hi Julie i'm now going to rant... i first joined this group about a year ago i've had Glaucoma now 40 years so have some experience lets say,at first i thought the group was great and don't get me wrong most people are but after reading comments from idiots who don't know what the f**k they are talking about really infuriated me i had to take a step away, do not listen to this person your consultant at the end of the day is your own personal expert who knows your eyes the best everyone is different, your scared at the moment and looking for answers that leads you grasping at everything people are telling you please don't let this one person bring you down, if your able to block their messages and embrace the warmth of the people who gave you those lovely caring comments. I'm sending you a huge hug full of love and positivity i'm wanting you to stay strong and just remember some people think they are experts at everything but as they say in Manchester they know nowt. Lots of love to you ,Sarah xxx😘
Hi sarah Thankyou for such a lovely message it’s really caring of you. I’m in a better place today I reported it and it’s being dealt with. Wow 40 years with gluacoma your an inspiration to us all xx
Hi Julie,
If it’s any help to you I’ve had 2 lots of laser both eyes, I’ve had countless field tests, which thankfully I passed as I drive, so far so good with my glaucoma.
Why this person sent you a private message like that is beyond me, to cause you upset and stress. They are not your Consultant, they know nothing about your medical history, it’s like these scammers, block them. You don’t need negative people like that in your life.
We are all here to help you and each other 🤗. I love this site as it’s so positive with some great advice and cheerful bits and pieces.
I’m just back from my 10 minute brisk walk, I was like a steam train, huffing and puffing round my streets 😂 thank goodness nobody was around, trying to get some, hmmm, a lot of weight off, trying to get my blood pressure down, it’s lovely and sunny up here in Northumberland.
Stay positive, big hugs, you know we’re all here for you ❤️X
Thankyou so much for your kind message. Glaucoma uk and Trish have sorted it now Trish was lovely. May last how long you have had glaucoma and which type. How old were you when diagnosed xx
It was discovered about 2 years ago as close angle glaucoma, after a really bad attack which I thought was migraine. I was 65 and had minor attacks for years, thinking migraine, until the bad one, went to Specsavers and left eye was reading 33 the right was much much higher, went to hospital and pressure had returned to normal, thank goodness I had a referral letter from opticians. I’m on dorzolamide and latanoprost after 2 lots of laser, I'm very lucky I have 2 Eye Hospitals with a walk in Eye Casualty. X
I am as shocked as everyone else that someone could behave in this way. The person obviously has problems but that doesn't justify upsetting another person. As you will see from my recent post I waited until I could end on a positive note as I think most people posting on here would have done. I left my recent appointment feeling that we've entered a new era of glaucoma care and treatment. My recent trabeculectomy was classed as urgent when I could see no reason for this but I now see it as very proactive early intervention. If you have no sight loss try to focus on this. With current treatment there is no evidence you will suffer sight loss. However do be proactive in making sure you get the appointments needed as slippage of these seems to be the biggest NHS failure. My consultant told me to contact his secretary if my next appointment doesn't come through on time. Your consultant's secretary is your best friend.
Hi Thankyou so much for your message. Yes a horrible person who has been dealt with now. I’m so glad you said the treatment is pro active and this is what everyone has said. I’m very compliant with drops and always make sure I attend appointments and check they are going ahead. Thankyou for such a lovely message xx
Hi JulieHope you're feeling a bit better today. Thinking about you. Sending hugs.
Lots better Thankyou x
Well I’m gobsmacked! Why would someone do that? Some people are so strange! If you had lost vision or were in danger of losing your vision your consultant would tell you! I know because they told me as on my first check I had lost a blob of central vision in my right eye and peripheral vision in my left. The hospital advised me to report to DVLA and after testing I have a 3yr medical license to drive. This was within a few weeks of diagnosis. The consultants are not stupid. There is not one path with glaucoma we all have a very personal diagnosis. I believe you should call your consultants secretary and tell them what you have been told and get it from the horses mouth. I’ve not been offered laser but it has been discussed prior to covid but consultants have differing views on drops, treatment etc there is not a definitive cure all. I’m waiting for my visual fields test results at the moment but my IOP was 12 and 16 which is right in the bracket where my consultant wants them so bingo! I’m celebrating for now until I get my test results. You are being looked after Julie! That’s fantastic! Scarey, yes, but fantastic! Don’t let anyone knock your confidence! I haven’t had an op yet but when I do I know there’s people on here will hold my hand to get me through and I love that. Sending love! ❤️
Thankyou so much for messaging me. Yes not a nice person who has now been reported and dealt with. Yes all our journeys are different. I’ve had 3 visual field tests and all 100% but pressures are to high hence laser. I always get my field test results straight away. Hope everything is going well for you xx
Good to hear that’s being followed up. We must keep this space a safe harbour. Yes I should have said that I used to get my field tests straight away but during covid lockdown I’ve had two what they call “virtual” clinics where the tests are done by other staff and the results go to my consultant who will call me if he has concerns but just write to me if the results show I’m stable. Last time the results were stable and I’m hopeful, as my pressures are a bit lower now, that he’ll say I’m still stable. I live in the south west with not many hospitals covering quite a large area so covid has put a lot of pressure on these hospital’s ophthalmic departments. I’m lucky that my opticians practice is a specialist in glaucoma , it’s why they spotted my glaucoma signs and took me seriously, when another optician hadn’t. I’ve paid for an appointment to see one of the opticians who actually sometimes runs the glaucoma clinic at the hospital, for a general chat to see if I can get answers to some questions I have. Just to reassure myself really. I know if he thinks there’s any concerns he will contact my consultant as they’ve done so before. My big new worry now is I’ve had the letter from DVLA to renew my medical driving license by end of September. Now that is giving me the collywobbles as I really want to keep my license and it means more tests! Fingers crossed for me! And fingers crossed for you for the 27th Julie! 🤞🏻🤞🏻
Thankyou so much for your kind message. Covid has be awful affecting everything hopefully we can get more normality now. I hope you get on well with DVD’s and I’ll let you know how I get on on the 27th x
Hi Julia, what horrible people out there, that's all I can say about them.... Now on to the realistic positive people.1. First of all as you know I have had laser treatment and I am the same as you diagnosed in January with open angled glaucoma. Other countries like america try SLT first as people don't take their drops and young people prefer trying SLT.
The NHS are considering this as the first thing they do before giving out eye drops... on virgin eyes it works best. Therefore this is mis information. As your specialist mentioned he is trying you on SLT instead of giving you a different drug to try as your pressure had gone up. That is what they did for me. There is a high success rate using SLT and Julie you should be positive and happy he is doing this.
2. Your specialist has not told you that you have damage to your eyes and your field test was the same as last time. I am having a field test in october a good specialist would do this to see how your vision is doing.
3. You are doing everything you can to help your vision losing weight, eating right and exercise.
4. We all care about you and forget those comments as they are not your specialist and any specialist would keep you informed of any developments. They have a 'duty of care' to do this. take care valfrance
Thankyou so much I’m glad your doing good with your laser results. I feel more positive today because of you and all the other lovely people on here xx
That is absolutely despicable, speaking for myself I would cut her out of my life regardless of who she is. Its bad enough having problems with your eyes, without and idiot who thinks they are a medical dictionary telling you things like that, makes me so mad. Your consultant has not said anything to confirm that, so rise above it, and the best of luck in the future.
Is all been sorted by Trish on here it wasn’t a friend just a nasty person on here who gluacoma uk are now aware of x
Hi Julie, please to not take any notice of private messages from people you don’t know. Only your Consultant knows your actual situation. I suggest you write a letter explaining your concerns to him/her. Try to keep it brief and to the point. You will find that when you ask people for help in a non- aggressive manner (not that you are likely to be like that) people go into help mode and do their very best for you. ❤️
Thankyou for your message. I’m only listening to my consultant I have V lovely friends V on here also who do you want me to write a letter to sorry don’t understand x
Sorry, Julie. I was suggesting you write to your Consultant if you have any concerns. Glad you have plenty of friends here.
Thankyou xx
Hi JulieBookworm1968. I feel so angry with this person. I know what it’s like to feel scared and alone with problems. I really hope that by now you have realised that she knows nothing about your eye condition and is talking a load of rubbish. Please try to forget what she said. You will be fine. We are all here for you and understand your fears. X
Thankyou so much for your kind message xx
JulieSorry to hear you are having such a hard time. Some people who know nothing at all about one's particular case constitute themselves as experts. I think they get off on causing upset to others, which is extremely immature behaviour. Your consultant is the person who knows your eyes. You might be told by eg someone at Specsavers, with training but not a doctor, you need treatment, and if urgent, they will phone your consultant, and at the least will refer you. But none of us on here can judge your case. A) we are not qualified, b) our eyes are very individual and c) there are many kinds of glaucoma. I try to give people hope by saying I have had problems including intermittent raised pressure since the 60s, was finally diagnosed in 89, have had many many procedures and operations, loads of different drops and ointments and I'm still here, even still driving, and since my cataract ops, not even needing specs most of the time. Thanks to the wonderful care of many professionals. I can't count how many visual field tests I have had in that time, I have had pressures of 65, and pressures too low to register.... on the same eye! You are an individual. Your consultant knows best what's what with YOUR eyes, not any of us out here, even if we had similar diagnoses, as even the shape of your eyes can make a difference. Follow their advice closely and try to be watchful so if there is a change you can tell them, but being tense is not good for any part of your body. Know that by following the professional advice you are doing your best for yourself and you are being brave. All the best.
Hi Hula48 Thankyou so much for such a lovely message. I know your not an expert like you say but having had gluacoma so long you have your very inspiring so Thankyou again I really appreciate your time to message xx
May I ask how long you have had glaucoma is it open angle how old were you at diagnosis. Sorry if I’m nosey x
I started to have inflammation probs aged 20. I was diagnosed as having glaucoma at 39, after many bouts... it was noticeably better during pregnancies, so auto-immune. I am now 73. So it has been with me a long time. It was thought to be a different type of auto-immune glaucoma till about 2003, less serious, but a new doctor did a few more tests and found it was scleritis, with occasional uveitis, which seems to be a more difficult condition. However, over the years, more treatments have been found and I am still on the go. One's point of view is important... unlucky to have it, but lucky to have a super doctor, lucky there are more meds, lucky to have support from friends and family and this website. Keep counting blessings!
Thankyou so much for an inspiring message. You have really managed well. It’s amazing x
I too have end stage glaucoma. It is less problematic than I had thought and over the years I've learnt to ignore ignorant bullies. Your health professional does have your best interests at heart - they swear an oath to that. Posters [like myself] are under no such obligation. Sadly some push their notions and ideas on others - even when not wanted.
Thankyou for your message. I don’t know what end stage is how are you with all of it. What type of gluacoma do you have. I’m totally over the nasty messages I received. Trish of Gluacoma Support sorted it out x
Primary closed angle with normal tension (recent diagnosis). End stage for me is like looking down a narrow toilet roll tube. Good ability to see and read but limited to very centre of vision. As an example if I read a book then I have clear vision to read 4 words - the other parts of the line disappear. Also when the take the laser pictures at hospital (where you look at the blue spot and a red line moves down or diagonally and finally in circles) I see only fragments of the line and never complete circles. I had thought end stage was to be complete black but my optometrist says not; it is having this central vision. But don't take my understanding a your diagnosis! I still have a nagging why are the central nerves protected? I think that is our innate fear of blindness.
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