Just been diagnosed with NTG at age 42 as Visual Field issues were picked up at an eye test with a family history.
I've started the drops and may go for the laser treatment that has been offered.
Are there many other here with NTG that was diagnosed at a young age and how has that progressed for you?
Hello. I know there are quite a few people on this forum with normal tension glaucoma who should be able to share their journeys with you. I'd just like to take this chance to say that NTG can be effectively treated. Despite your eye pressure being within normal limits, the treatment for NTG is still to lower the pressure further. The eye drops will help to do this and they will monitor how well they are working for you. Laser treatment can also be a good treatment option. If you have any queries or questions please call or email the Glaucoma UK helpline where we can provide you with some advice. Best wishes.
Hello Whagwan,
I am sorry to hear of your diagnosis and hope that you are feeling alright about it. Hopefully, your family history of glaucoma will give you some reassurance but remember that treatments and management of glaucoma have improved a lot over the last 20 years or so.
I had NTG diagnosed at he age of 28. This was in the days before laser treatments and stent etc. I was given trabeculecomy in each eye. Those operations, a cocktail of differing drops over the years and Diamox capsules have kept my eye pressures below 10 for 99.9% of the time since diagnosis. When I have had a rise in pressures, my drops are changed and I stabilise again.
Unfortumately, I had lost a lot of sight (95%) before getting the right diagnosis but, since the age of 28, - some 40 years ago, I have not lost any more sight. I would say that my NTG has not progressed since diagnosis and I would say also that given the variety of drops, prcedures and surgery available, the outlook for the vast majority of folk being diagnosed with NTG these days is good.
Good Luck to you and Best Wishes,
Laura
Hello Laura
I too have recently been diagnosed with NTG, and have been worried that lowering pressure may not work (as it isn’t high in the first place) so your journey has reassured me. Thank you.
May I ask how you have fared on Diamox? Do you take it long term? Have you had any problems with it? I took it for just three days to counter the pressure spike after cataract surgery, and it lowered my high blood pressure, and I slept better. I was wondering if it would be something to consider longer term …..
Hello Puckster,
Sorry to hear about your diagnosis and your worry is understandable. Easy to say, but don't worry as there are so many options now for reducing pressures.
I have been on Diamox (2x250mg a day) slow release for 37 years. I had low blood pressure before taking it so cannot comment on that aspect and I never had any trouble sleeping either before or since.
There are a number of side effects possible but for me by far the worst one is pins and needles/numbness in my hands, arms, legs and feet. It can be so bad that I have difficulty standing or using my hands. However, Diamox is very important to me in keeping my pressures under control so I continue using it.
If Diamox is needed, the possible side effects should not put you off but it is a personal thing as we are all different.
Good Luck on your glaucoma journey.
Best Wishes, Laura
I share a similar history to Laura regarding almost 40 years of medical and surgical attention. Differences are that it was IOPs in the 30s that triggered treatment and I lost no significant sight until within the past 10 years. It perplexes me when people quote a percentage loss of sight; what does this mean - Laura, can you explain this in of your symptoms such as visal field loss, etc please?
I hope you understand that your optic nerve neuropathy (i.e.glaucoma) is the form of the condition that is most difficult to manage. if the damage is not being caused by high IOP then you have structural weakness of the eye (research trans lamina pressure gradient) or poor ocular blood flow (or both, at least) but the only reliable known remedy is to lower IOP ideally to < 10 and maintain that for the rest of your life. Deep discussion with your consultant throughout is important !
Hello Sorshup,
Re your post above, I'm sorry to hear that you have had a similar journey to me and that you have experienced sight loss in the last 10 years. It is a worrying time when things start going wrong and I hope it is now stabilised and that you can relax about it.
I am replying to your question above where you ask about people giving a percentage of sight loss and its effects on field of vision. I don't know if it's the same for everyone, but I will try to explain my case for you.
The figures I've been given have come from 4 different Consultants over the years. They have all based their opinion on field tests, cupped disc ratio and, no doubt, their experience. It is difficult for me personally to put a figure on my loss as the brain is pretty good at 'filling in some of the blanks' of what I can't see. Field tests over nearly 40 years have shown that I have no peripheral vision at all and just a small area of central vision. It is that combination of sight loss which gives the figure of 95%. It was the figure given to register me as 'blind'.I had one Consultant who expanded on the 95% figure for my employer; he said that my sight loss made it seem as if I am viewing the world through a small smartie tube.
Obviously, I am registered 'blind' (or whatever the current term is) and have been for many years. In every day life, my particular field of vision means that I can only see things that are right in front of me so I cannot see anything 'out of the corner of my eye' and can't take in the big picture. Of course I can move my eyes around so see to the side that way butit is not quite the same. Also, having such a small area of vision means I cannot judge perspective eg unfamiliar kerbs/steps cause problems. In addition, I need good light to see anything in and night time/darkness is a time when I can make out hardly anything at all.
There has been some speculation over the years as to the cause of my NTG but nothing conclusive. Given historic low BP and poorish circulation (cold hands and fee), poor blood flow generally is suspect. However, as you say, the treatment is to keep IOPs low. I've never had high IOPs generally they were 17 and 18 before my trabs. My trabs were very successful and no scarring but , needing to keep IOPs low meant I carried on with drops and started Diamox. All of my Consultants since then have had to tinker at some time with my drops to keep the IOPS below 10 and it is that which has stopped the progression of my glaucoma to date.
Sorry for the long post but I hope this helps explain the 95% vision loss in my case at least.
Best Wishes,
Laura
Thank you Laura for your comprehensive and very personal account. To have lost so much so early in life must indeed be a mystery to all, including the medics!
Your arithmetical explanation of the 95% figure is now entirely understandable. For most sufferers, with field loss that is variable in both intensirty and distribution over the whole visual field and different for each eye, trying to grade loss in detail a percentage form can't be possible. Although I can easily describe my losses in detail my overall sight limitation binocularly could just be described as looking through a dirty window.!
Thanks again, I look forward to your future posts.
I hope your dirty window lasts a long time Sorshup 😀 My field test pictures look a bit like black Polos but looking on the bright side, it means I have much shorter field tests than most because they only test the central vision area. Every cloud...
One thing I didn't mention was that when I was actually losing my sight I had the feeling of things moving. I would park the car, with the handbrake on, and be so convinced that the car was rolling backwards that I'd stamp on the foot brake. I would also lie in bed and see the wardrobes falling into the room and leap out of bed. I was under considerale stress at the time both at work and home and I thought I was going mad! My GP failed to help and eventually (at the sugeestion of my Mum) I went to an optician who found the glaucoma. Scary times but all good now.
Thank you for your interest Sorshup and for sharing your history. Always good to know that others have problems too.
Take Care and Best Wishes,
Laura
Thanks for sharing your stories. I've got a scientific/technical background so have been doing a lot of reading of studies and prognoses.
Reassured that almost 90% of those with NTG who receive treatment don't go on to have any further sight loss. (From the Collaborative Normal Tension Glaucoma Study)
And I've been very interested to read of the studies into Gingko Biloba in NTG. Whilst I understand the results are far from conclusive at this stage it seems to be a good option on the balance of probabilities/risk profile.
That should say " a good option for adjuvant therapy", I'm not proposing Gingko supplements as an alternative...
I've started on the drops but didn't realise they have to be temperature stable. Given I do a lot of camping and bikepacking activities with carrying minimal gear I think on my next ophthalmologist appointment I'm going to ask for the Laser therapy I was offered.
Hi I was diagnosed with NTG in my 40s (over 20 yrs ago). From diagnosis I was prescribed Latanoprost drops, which worked until 2 years ago when I had a bad eye infection. This resulted in some vision loss. My drops were then changed to Latanoprost with Timolel. My pressures and vision are stable again. As far as refrigeration of drops goes, mine need refrigerating until I first open them, then they don't need refrigerating. I would check with your pharmacy to be sure. In my experience NTG can be managed well with drops. I haven't been offered laser but I'm sure your consultant will help you make the right decision for you. All the best.
Thanks for sharing. W/R the drops I was told they need to be refrigerated before use but then once open kept below 25degC. Which would preclude being carried around all day at times in the summer...
Trab for normal tension glaucoma
Normal Tension Glaucoma 
low tension glaucoma 
