I’ve just recently been diagnosed with normal pressure glaucoma. I’ve always been very short sighted so Ive always had regular eye checks from a contact lens optician and a different specs optician. I go to the same place every year. About 18months ago my contact lens optician said that the thinning of my optic nerve ought to be looked at by a specialist and wrote to my GP who referred me to ghe local NHS trust optical service which was at that time Openrose a private health company. To ALL these three professional eye people I said I had blurry patches across my left eye. Not one of them said that’s a symptom of Glaucoma! Thank goodness the NHS trust ended that contract and I changed to Moorfields. Now I’ve finally been diagnosed by Moorfields I’m shocked that they didn’t know about this symptom. Has anyone else had this experience ?
Normal pressure glaucoma -having a rant - Glaucoma UK
Normal pressure glaucoma -having a rant
I’ve been going to same optician for years and was referred in March 2023 for small haemorrhage right eye
Got seen in may 2023 , and got a diagnosis in October 2023 of normal tension glaucoma
Started on drops once a day and seas due to be seen in December but eventually got an appointment through for may
I’m now on 3 different drops daily and have to go back in 6 weeks to decide if I need surgical treatment
I’m obviously very anxious but wonder why nothing was noticed by optican before as there is a lot of damage to my left eye ( retinal thinning, nerve damage and peripheral vision loss
Sounds similar Crafty Gran. Sorry you are in that position. Sounds very anxiety making. I find it quite shocking that opticians seem to know nothing about normal tension glaucoma At least one of my opticians noticed my optic nerves looked a bit odd and referred me thank goodness. But normal tension glaucoma is a bit of a mystery isn’t it. Do all those drops and now surgery mean it is still progressing? I wonder if doctors really know how to stop it Do you think we need a normal tension support group so we can find out more?
I hope it all goes well you 🥰🥰
I just wonder if normal tension glaucoma was recognised years ago
My mum says there isn’t or ever had been glaucoma in the family
But I wonder if there was but it was just never picked up
Stay in touch and let me know how you get on 🥰
You too. That’s a good point about it not being diagnosed in former times. I’ve been reading all the things that often go with it. Extreme myopia. Migraine Cold hands and feet. Low blood pressure - not now but I used to. There is definitely an education job to be done.
Let me know what they decide about your next step. Is that laser treatment they are thinking of? The doctor I saw last week - not a consultant- said laser is less effective on normal pressure G but to be honest I didn’t believe him. I think he just wanted to try drops more first. I can’t find anything written that suggests that is true
🤞🏼🤞🏼🤞🏼
Strange me too migraine..low blood pressure cold hands ..feet etc interesting..
Hi! I’m thought to be NTG now. My first SLT was deemed to fail. BUT my consultant pushed on and did my good eye. This was deemed to have worked. 👏🏻 It also bought down pressure in both eyes. Pressures have risen up to 15 again slowly but still in my window target. I still have to take 2 different drops 3 times a day in both eyes. But I am considered stable.
Regular disc bleeds and drops work then don’t work is my pattern. I have migraine with aura, reynauds, low blood pressure, low heart rate (resting taken at drs yesterday and 53 it drops to 41 when sleeping). Lots of blood flow issues I’d say. I believe my parasympathetic nervous system is a bit over sensitive and kicks in to fight or flight mode at the drop of a hat. I don’t feel stressed but my body reacts as though I am. I pack my life with stress busting activities. Bee keeping weirdly I think might be my best one. Plus reading. walking and meditating etc.
Yes we may need our own forum to stop boring everyone else! 😂 Also we can be scary as we buck the “damage will take years” trend which is the norm for most glaucoma patients, but not necessarily if you have NTG. We often seem to be women too! Curious thing that!
Hi I have normal tension glaucoma, had been going to Specsavers for a check up every two years. I was referred to the eye clinic, had no idea why! They said I had normal tension glaucoma that had really progressed and I shouldn’t be driving. Living in a rural area that really worried me, fortunately works medical scheme let me go to Moorfields where my lovely consultant explained everything and put me on eye drops. He also said it’s not for anyone to suggest you shouldn’t be driving other than after a DVLA test. So over the years I had more and more eye drops and have had a trabulectomy in each eye as they very slowly deteriorated- the drops don’t work for ever. I have some vision loss in both eyes but am still passing the DVLA eye test. I go to a different independent optician now and he is really aware of glaucoma and has all the equipment to test for it. I think you are right opticians need a much better awareness that just having normal pressures doesn’t mean you don’t have glaucoma. No history in my family either..although lots of us are short sighted. Good luck with your treatment.
Thanks for sharing that. Glad to hear you can still drive. I guess our fate is more and more drops! I feel like i need to educate people somehow We need a NTG awareness day!
Hi, I have been treated for POAG for narly 40 years but have suffered visio n loss over the past 4 years despite several filtration procedures. My NHS consultant agrees that my situation merges with NTG because I have deep central vision loss apparent on the visual field analysis, which is not usual with POAG. I am an optometrist, so am very familiar with the condition !
So my symptoms are of general faintness, "washed out" vision, susceptibility to glare. and some definite visual field loss in places. Without fuller discussion with any individual it is difficult to know how to relate expressed symptoms with objective signs the instrumentation provides, so but your blurry patches imply loss of retinal function consistent with glaucoma.
NTG is essentially due to poor blood supply to the eye; congential, no current direct remedy other than the traditional lowering of the IOP (which is limiting the work you blood pressure is trying to achieve in feeding the eye! Do internet search ocular blood flow, nocturnal IOP.
Sounds as if your CL optician was on the ball. You are better off with Moorfields than the private company!
Thanks for that info i will google as you suggest.
Hi Sorshup! I can detect minute visual changes long before the scans show a change at the hospital. My consultant finds this perplexing.
I have found that my vision is worse when I’m in bright light but I’m starting to think this is my pupils constructing and so I’m looking through the deteriorating vision in the central area. Once my pupils are wide then my brain can skirt around the central damage I think.
So I wear transitions lenses to keep my pupil wider as light changes. I also have Polaroid shades that go over the top for driving as the transition leases don’t work in the car so well. There’s a point where the transitions lenses wait to kick in that is horrible as my pupils construct and I’m sadly made very aware of the deterioration of my vision till the shade appears. 🙁
Yes! I have! My mother had glaucoma so I was advised to have full checks every year at a respected opticians. I did..faithfully. I had contact lense checks, annual eye tests, new prescriptions and regular field of vision tests and pressure tests plus I paid £50 to have pictures taken of back of my eyes to check nerve damage. Pressures were 18/19 and “no problem” I’m told. I reported a weird blurry/twinkly patch I noticed in right eye which I noticed when I painted a wall white. I say it was like my migraine aura but never went. Nothing to worry about they said.
Roll on a couple of years and I moved house and optician. On my simple contact lense check I mentioned my mother had glaucoma and they immediately requested to do a full eye check. I agreed. So glad I did. This optician was specialist trained in glaucoma. The optician took my blurry blob very seriously and referred me to hospital. My pressures done with a more accurate pressure reading were 25. I have thin corneas. My fields were borderline. 6 months later at the hospital check I was diagnosed with Glaucoma in both eyes with right eye vision loss paracentral and nerve damage apparent to left eye too. I surrendered my driving license and received a 3 yr license. I was devastated.
After a year NTG was mentioned. Not initially as my records started from new optician at pressures of 25. I reported they’d never been above 18 previously which was noted but my target was set at 21. I still had progression until they got my pressure down to under 15. It took several years to stabilise.
Lockdown cropped up after 2 yrs so I didn’t get a check for over a year. Consequently I have lost more vision. But on the positive side I have now been stable for over a year.
I’m now considered NTG although my consultant says the diagnosis of open angle v normal tension is pretty fluid.
I often wonder where I’d be if my original optician had referred me when I said I had a twinkly spot. I think I’d have saved more vision. I also try not to think about what would have happened if I hadn’t walked in my current opticians with glaucoma training. It could be so much worse. At least I’m still driving.
I think all high street opticians should be better trained in glaucoma recognition and should have an any doubts referral policy. I dread to think how many people are walking around losing their vision to glaucoma because many high street opticians are primarily focused on making money from selling specs and sight screening comes as an added extra.
Surely the NHS would benefit from free drop in screening for glaucoma and other common degenerative eye conditions on the high street? Like we have breast cancer screening. Glaucoma surgery is expensive and we have an aging population so a there’s lot of eye patients now and number ever growing.
Thanks for this opportunity to vent! I do it every few years and still I’m really angry. But I park it and get on and struggle to do my beekeeping, dressmaking, reading and all the things that bring joy but need good vision and I know one day I may not be able to do them as my central vision disappears. All because one stupid optician didn’t think to refer me and Chase ne feel stupid for mentioning it, even with my family history.
Ironically my mom has closed angle glaucoma. Picked up by a good optician treated immediately with laser op and consequently she’s never lost vision for over 20 years. She’s 88. Her glaucoma is considered more urgent and more dangerous. Open angle isn’t (they say). It has slow progression (they say), it’s mainly peripheral vision goes first (they say). Not in my case! So I have the annoying experience of everyone telling me I’m lucky to have this type. I’m absolutely safe to keep vision. The perplexed look on their face when I say well that’s true mostly but I have lost vision and right near the middle too and in just 5 or so years at the age of 55!
I’m so sorry this has happened to you too. More so as it means since 2018 when I discovered it had happened to me nothing has changed.
WE SIMPLY NEED MORE AND BETTER SCREENING!!!
But not many, if any, people die of glaucoma, so rightly or wrongly, I feel we stay at the bottom of the pile.
Beecalmed. I’m so sorry to hear that . It feels so unjust that we do all the right things and still our condition is not diagnosed in a timely fashion. Thankyou for replying. I think my urge to do something about educating opticians is strengthening !
👍🏻 Let me know if you start an NTG forum. There’s quite a few of us on here that might join you! 🙂
This is only on the NTG matter, there is a lot more to glaucoma.
What is glaucoma? It is the progressive loss of retinal nerves within the eye and as they leave it.
The eye is an optical instrument the dimensions of which must not vary, otherwise its focussing would change (think rings on fingers, summer and winter.). So it is a rigid structure with water forming within it (the aqueous) and draining leaving the fine tuning of a balance of pressure (IOP).
There is a weak point in the structure, a mesh-like hole called the lamina cribrosa (LC) through which the fine nerves pass out. If this distorts due to the IOP the nerves get damaged. This may happen because it is weak or because the pressure is excessive (or both).
As with your computer or camera, the imaging process is energy and nutrition hungry. So if the quality of the vasculature supplying the eye is not optimal or is failing through arteriosclerosis or because the BP is low, the nerves will gradually die due to poor ocular blood flow (OBF).
The IOP and the systemic BP act in opposition to each other in the maintenance of good OBF.
The strength of the LC, the quality of the blood vessels to the eye, and the IOP are all influenced by inheritance. If the IOP is not high but the LC and OBF are not good, there you have NTG.
So imagine Stanley; he has a weak LC and poor ocular blood supply, is ignorant that he has a both a cousin and an uncle with glaucoma, doesn’t get diagnosed until 45 and continues to progress despite treatment and is blind by age 65. But Alice has an LC as strong as a 5-bar gate, great OBF and despite IOPs much higher than most is still driving legally at age 95.
And you an I? Well, at all positions in-between!
What can the doctors do? Only reduce the stress caused by the IOP; relatively easy and effective if it is found to be high (and if successful, considerthis to have been a correct diagnosis of POAG) but if not high there is less to play with, as in NTG. So here is the question:- if treatment for POAG does reduce the IOP to a normal level but the damage continues to progress, should the description of the condition change to NTG? I hope you will agree now that considering NTG in isolation is not helpful for the doctors whose only help can be lowering IOP. However the symptoms experienced by you and I can be different; this, and their management and amelioration interest me.
Great info but we have to agree to disagree here. I’m not just looking at glaucoma as an eye disease in isolation. I actually DO think that normal tension glaucoma might be considered separately. But that is because I am looking at NTG patients holistically not just at their eye condition.
As I have stated before NTG patients often share other conditions in common. I think this points to something else going on. And I’m not alone in considering that. Look up Flammers Syndrome. Here’s a simple video from last year on the Glaucoma Foundation you tube platform: m.youtube.com/watch?v=I0m-k...
You will see that it’s perfectly possible that NTG patients are made slightly differently to the average glaucoma sufferer. The treatment of the syndrome can improve not only the NTG instability and progression but also those other conditions NTG sufferers may share.
There’s useful info on there for those with NTG. For instance I didn’t know that if I had NTG POAG, Reynauds, migraines with aura, low blood pressure, tinnitus (there’s a lot more Flammers Syndrome indicators) then I should avoid fasting. I’d been following the 5:2 diet and doing long intermittent fasts for several years for good health. But once I realised it might be affecting my eyes I stopped fasting. I now still eat healthy but avoid skipping meals. I also avoid extreme cold. Extreme emotional stress (or do calming mindfulness to balance). Extreme altitudes (I acclimatise better first). I also increased my salt intake which was zero previously to help my low blood pressure. Consequently my migraines are much less frequent, my tinnitus is improved, my reynauds kicks in less often and…my IOPs and nerve damage have stabilised. I follow my consultants traditional glaucoma treatment regime faithfully and diligently but to quote my consultant: “whatever you’re doing just keep it up as we want this stabilisation to continue.”
I think my NTG sufferers should know about Flammers. Small changes in addition to their current treatment might help stabilise their condition. It’s likely that for most POAG patients this info is not relevant.
I don’t understand why a complete medical profile isn’t undertaken at diagnosis. But as I said in USA and Europe there clearly is discussion about Flammers syndrome and NTG but in the UK there’s nothing! I’d like to know why that is?!
Hi Beecalmed. I’ve been reading about Flammers syndrome and NTG on their website. Very interesting. Do you take any of the supplements recommended and if so have you noticed any beneficial effects? Also do you know if there are any practitioners that trained with Flammers in the UK ?
Hi! Glad you found it an interesting read. 🙂 No I haven’t heard of any practitioners in the UK sadly. I haven’t tried any of the supplements yet. I am considering taking Gilko. I am considering magnesium. I’ve just had some routine blood tests so I’m waiting to hear what the results are and don’t want to take anything until I’ve got the results. I generally think that if taking supplements you should be monitored by a dr but that doesn’t seem to be possible in UK.
I did stop intermittent fasting though after reading the advice. I also stay at the mid to top of my BMI rather than at the bottom. I also started taking some salt with my meals as I have low blood pressure and low pulse rate. I also pay more attention to my stress levels now. I try to spend plenty of time doing things that get me out of my head, so to speak. Doing those simple changes and following a healthy diet, lots if sleep, and water, my symptoms have improved and/or become less regular as a result. I’m fairly sure for me being a low weight or at the bottom of my BMI actually increases the frequency and severity of my symptoms.
If anyone finds a dr that is interested in Flammers Syndrome do let me know as I’d travel a distance to see someone. 👍🏻
Thanks for that Sorshup - very clear and interesting. Yes management and amelioration definitely of interest. i agree we don't need a separate forum. But initial diagnosis also interests me at this point which is where the difference between NTG and and other types seems very relevant. I would really like to see a resource being produced that could be sent out to opticians/GPs/health centres/ the public - a leaflet or a short video with an explanation about this, with some images that illustrate our experiences of early symptoms.
In reply to both W&S and BeC, yes I understand and agree with everything you say and I would extend the possibility about the relevance of Flammer etc. to all primary sufferers, not just those diagnosed NTG. In particular, the lack of info and discussion of the holistic aspect and of symptoms and self-help. Where is Glaucoma UK ?
It must be remembered that here is a restriction on our NHS staff time to go beyond the essentials and also the fear inculcated into them of overstepping the peer-reviwed and NICE approved guidelines. There is always the danger of quackery and conspiracy muddying things (is it true? - calcium and iron supplements, as oxidising agents, are damaging ?)
Regarding diagnosis, the OCT has proved invaluable. And if only people would check the MGCA as well as the NH, more NTGs would be found earlier!.
Glaucoma sufferers care mostly about two things, progression and the effect of the condition on sight and lifestyle. "How do you find your sight is affected?" is rarely asked by the medicl staff - our replies would be too lpng-winded and would not influence treatment. But I would happily share, and be involved in compiling info for others.
Hello, What a great article you have written! As a fellow sufferer I found it most interesting and also very worrying to think so many opticians may be missing people with glaucoma. As we all know, sadly once the vision is lost, it cannot be replaced. I do not like those puffer tests they use, and would always blink so they probably couldn’t get an accurate reading! I am now registered, if that’s the right word, to have regular checkups at my NHS glaucoma department but have also been to a private consultant, who is extremely thorough. Unfortunately though, I appreciate that not everyone can afford to go private. It would be such a good idea if the NHS could run walk-in glaucoma checks, it they are so busy these days………… meanwhile people are losing their sight! I have my eldest son a booklet on Glaucoma and Relatives - he is now going to see an optician to get checked. I hope he is successful in finding an experienced optician and not one whose only interest in selling him a pair of specs!
Hello all on this current thread. I am away from home and will write more fully on Monday, but just a word from someone who has seen life from both sides of the tonometer for 40 years.
A separate NTG forum would be a mistake. As has alrady been mentioned, POAG and NTG rather merge, especially in later life. There is a statistic 10% of people over 75 have glaucoma. Essentially, glaucoma is a natural development of ageing.
I will expand in two days, so relax and enjoy the weekend !
I look forward to hearing your thoughts and experience on this subject. 👍🏻
I would say though that I was diagnosed at 55yrs. That’s not over 75 and in my opinion not old! At diagnosis I’d probably been losing vision (as I was untreated) for about 18 mths to 2 yrs or longer already. So I was in my early 50s when the glaucoma actually started. Not old. Others in here have stated similar.
Many of us with NTG also have other long standing conditions in common: migraine with aura, Reynauds etc. It suggests a probable link to us but one that is ignored by medics here in UK, (however Joseph Flammers a doctor in Basel, Germany had some interesting theories that are an interesting read. Mention Flammers Syndrome in the Uk and you get blank looks though).
So sorry to hear this
Totally agree that more training and awareness of this type of glaucoma
Mine has gone from being diagnosed in October to waiting to see if I need surgery
I will know this in the next 2 months
I wonder why my optican hadn’t spotted it earlier
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