I’ve just been diagnosed with bilateral NTG. I think I was in shock in the consultation room, I couldn’t ask or even think of many useful questions.
I have structural damage in both eyes & pressures were 20 adjusted to 18 for corneal thickness. I’ve started drops once a night.
I had a funny turn yesterday morning. Felt so dizzy & had so may floaters in my eyes. I went & got an eye health check at my opticians. Combination of drops/glaucoma/ age he said. I’m 44. Has anyone had dizziness using the drops?
I’m trying to do some reading around but it’s so easy to fall down a rabbit hole. I’m putting a list of questions together for when I see the consultant next. Does anyone have any top tip questions that I could add to the list? I’m just at the beginning of this journey. Any advice greatly appreciated.
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Maisie79
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like you I’m just at start of this journey and was lost for words when I was told . I too couldn’t think of any questions at the time but have been writing down some for next appointment.
I found the questions in glaucoma uk really helpful.
There is so much information and support on it .
I also get a copy of the letter the consultant sends to the GP and from that I have written questions down to ask her, especially to understand the significance of the readings
I’ve not experienced any dizziness so can’t comment on that but I’m sure someone in here will be able to help
There is so much support and information on here from others ,
Thanks for you reply. That’s a good idea about the letter. I’ve had a copy of mine & I can’t understand half of it.
I’ve emailed the consultant with my concerns about the dizziness & floaters. The optician was reassuring but I feel so anxious at the moment.
I’ve started a notebook for questions to ask & to make a note of anything I read online that sounds helpful or interesting. This wasn’t how I imagined starting the new year!
I’m very grateful to have found this forum.
Good luck to you too & thanks again for reaching out
Hi Maisie79! It’s a shock getting the diagnosis and it will take some time to get your head around it and to roll with it. Reading your post was like deja vu of when I was diagnosed 5-6yrs ago. My world was spinning quite literally too!
What drops are you on? Yes I have had extreme giddiness as a side effect of one particular combination drop called Simprinza. That said many people use Simprinza without any issues though and it’s an excellant drug for keeping pressures down. If you’ve only just been diagnosed you are usually started on something like Lantanoprost or similar. Most people don’t have strong reactions to Lantanaprost on the whole I believe.
Do take your drops religiously and stick to your set timings as much as possible. 👍🏻 Don’t stop even if you feel you’re having a reaction to your drops just ring your consultant and tell them.
Questions you need to ask your consultant? Well if you’ve been diagnosed with NTG in both eyes you need to ask your consultant if you need to notify DVLA. Glaucoma diagnosis in both eyes does usually mean you have to notify DVLA and be tested and potentially be given a medical driving license. Sorry if this adds to your stress but you need to ask the question.
You might want to ask your consultant if you are a suitable candidate for SLT. This is now a first line treatment same as drops. Some people successfully have SLT first and don’t need to take drops at all, which protects their corneas from damage and their system from side effects. It’s a simple pretty safe procedure and works really well for some people. It appears to have worked for me but I still also need drops too unfortunately.
I wasn’t diagnosed as NTG originally but as times gone on my specialists now suspect I am. It’s taken a while but they have managed with SLT and trialling different drops to stabilise my glaucoma.
May seem a bit of a random question but do you also suffer from migraines? And what is your structural damage? Does that mean your optic nerve is damaged? Have you lost any vision? I think I’d want to ask the consultant more information about that.
Do keep in touch and let us know how you get on. I hope you get to the bottom of your giddiness I know how debilitating that can be. Oh and I’m female and diagnosed with primary open angle bilateral glaucoma (suspect NTG) with para central vision loss in right eye, 6 yrs ago. I was in my mid fifties.
Hi. Thank you for your reply. I really appreciate it.
I’ve started on Latanoprost & have set an alarm on my phone to remind me. I’d read about SLT but not sure I understood it could be used as a first line of treatment. So I’ll enquire about that thanks.
I do suffer from migraines. History of all kinds of weird and (not so) wonderful headaches. My consultant asked me about that too. I’m doing some reading around that. I’ve never really singled out any triggers aside from stress & hormones
I have damage to my right optical nerve. And retinal damage to both. I haven’t quite got to grips with all the terminology. So I hope I’ve explained that properly. The consultant said it hadn’t progressed to functional damage so in that sense it’s been caught fairly early? My right side vision does seem a little more dull compared to the left - I’m obsessively comparing my eyes now, sure people are thinking I’m winking at them! I should probably stop...
I hope you find some drops that work for you very soon. Thanks again for all your advice. Please keep in touch.
like you I was diagnosed at a relatively young age, at a routine eye check. I’ve had glaucoma for over 15 years, I’m now 56, and only found out last year that I have NTG.
Unfortunately, in the pandemic, my routine appointments went by the wayside, meaning that when my glaucoma worsened, there was nobody around to notice. Since my new diagnosis, I have been on two drops a day. With the goal of getting my eye pressures down as close to 10 as possible. This is entirely achievable with medication and you should also be assured that there is no reason at all for you to lose your sight, which is the thing that everybody worries about when they receive the diagnosis.
As has already been said there is lots of great advice on the glucoma UK website but the questions I would ask are:
1. How much damage has already been done
2. What are my pressures now and what’s the target
3. What happens if drops don’t bring the pressures down
4. Are there any operations that would remove the need for drops
I would also consider getting a second opinion if you can afford it, just to be sure.
Finally, a couple of things; be fastidious about your drops, set a time and stick to it. Oh there are lots of us in here with NTG who also have migraine and Raynauds - if this is you, trying to minimise the triggers could also help reduce further damage.
The impacts of the pandemic are immeasurable. So sorry to hear about the delays to your appointments. Was your glaucoma largely stable for those 15 years? I hope the drops work reducing your pressure. Which drops are you on?
Thank you for the reassurance. It’s literally the first place your mind goes to - am I going to lose my sight?! It’s early days, I’m still in shock I think. Yes, I do have migraines, cluster headaches & on the list goes... that’s popped up a few times in conversations about NTG. So much to learn about.
Thanks again for responding. It would be great to keep in touch.
Very happy to keep in touch, Maisie! Yes, my NTG is back to being stable, I ended up paying to see a private consultant who I have high levels of confidence in. The NHS are pushing me down the cataract route but his view, which I agree with, is that if I’m tolerating the drops I’m on now, there’s no need yet to replace my lens and “give me the sight of a 70 year old”. Plus, cataract surgery doesn’t reduce pressures down to low enough levels.
There’s a lot to think about but, the most important advice I can give is to be fastidious about your drops. Don’t miss and stick to your timings as much as possible. 🙂
Hi MaisieI too was left reeling when told I had glau coma. I don't know how long you have to wait to see your consultant so you can get answers to your questions, but if it's a long time and if you can afford it I'd recommend seeking a private appointment, as it will feel far less rushed and hassled than an NHS one. If an SLT is recommended, don't panic - I had one and it was completely painless and straightforward. Good wishes.
I decided to book a private initial assessment. I was in a flat spin of worry when the optician told me he was referring me & that there would be a minimum 12 month wait to be seen. We couldn’t really afford it but I didn’t feel like I should wait. I’ve a follow up in 7 weeks. I’ve emailed some questions over already after the funny turn I had at the weekend. I’ll have to switch back to the NHS at some point fairly soon.
I’m going to enquire about SLT, thanks. Did you have drops beforehand or just go straight to SLT? Wondering why the consultant didn’t offer it up as a treatment option.
I wonder why SLT wasn't offered initially - I spent about a year on drops and only got the SLT when I raised the question of whether one would enable me to come off drops. It didn't but it did lower my pressures a bit. I have seen one or two mentions of dizziness as a side effect of glaucoma medication. It's encouraging that there appears to be no structural damage to your optic nerves. Good luck for the future.
Hi, I spoke to my consultant about SLT. She said as my eye pressures are at my target (15 at the last check, adjusted to 13 for thick corneas) she wouldn’t recommend SLT at this point for my NTG as she doesn’t think it would make much difference. It’s always an option for the future. The dizziness passed after a while but I’ve since switched to Monopost to try & solve other problems.
There’s significant structural damage to my right optic nerve and damage to my left. My functional vision is good.
It's a horrible shock getting the news.Another vote from me for (at least one) private consultation. Well worth the money if you can afford it. No way was I prepared to wait up to 12 mths just to get a formal diagnosis and treatment plan.I opted for SLT and it was painless and straightforward. Not suitable for everyone, but so far, so good. Didn't fancy the drops for reasons you've stated, but accept that I may need to at some stage.
Hi, yes I opted for a private initial assessment too. I was so worried about the prospect of waiting 12 months to be seen. I needed to know what was happening. Knowledge is power & all that! It’s all so expensive though.
Glad to hear SLT has worked for you. Do you know what people it isn’t suitable for? Were you offered it straight away? I haven’t felt dizzy since the weekend, hopefully that’s the end of that. I suppose the drops take some getting used to?!
Hi there. I would just like to echo some of the above comments as they are really useful. You will need to let the DVLA for NTG in both eyes. Try not to panic about this, but there will be a test that will need to be done at specsavers. Firstly you will need to fill out a V1 form online. Our booklet on driving and glaucoma is very helpful - glaucoma.uk/product/driving...
The drops could be causing the dizziness. If you have a look at the patient information leaflet then it will list the side effects of the drops, so you could have a look in there to see if it is listed. If you think the eye drops are causing the dizziness, try contacting the eye secretary and discussing this with them, as your eye specialist could prescribe you new drops to try.
SLT, as mentioned above, is a safe and quick procedure, and I would recommend asking your eye specialist about it. It could be helpful in reducing the amount of drops you need and help to bring your pressures down.
We do also have a webpage on NTG which is very informative, which you can view through this link - glaucoma.uk/blog-category-b....
If you wanted us to try and answer any questions in the meantime, then please feel free to call our helpline on 01233 648170 or give us an email on helpline@glaucoma.uk.
Thank you so much Kieran. I appreciate the advice & links. I’ve felt quite lost since my diagnosis but finding this forum has been so reassuring. So grateful for every response & good wishes 🙂
I’ll definitely be asking my consultant about SLT & sorting the eye test. As nerve wracking as that is I understand why it needs to be done. Fingers crossed.
Sorry to hear that you are having difficulties with your treatment. You should be able to contact your consultant (by phone or email) to ask for help.
Your optician is not a doctor so you can get conflicting advice. Age shouldn't be a factor as you are only 44. I was 50 when I was diagnosed and wasn't considered old.
As I was told by a mentor of mine many years ago, get into the driving seat to deal with the situation.
I am having surgery on my eyes in two days time that I am not looking forward to. You have all my sympathy and good wishes for getting the help that you need.
Thank you! I felt so powerless when I first found out. When I left the opticians after the routine eye test I just couldn’t process what was happening. Yes, get in the driving seat - I fully agree.
Wishing you all the best for your surgery. Please keep in touch & let me know how everything goes.
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