Recent new Glaucoma diagnosis - should I wait ... - Glaucoma UK

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Recent new Glaucoma diagnosis - should I wait 3mths for next appointment?

glauca profile image

Hello all, hope you are all keeping well as can be and enjoying the pleasant recent weather.

New to the site as only recently been diagnosed. Apologies in advance if this becomes a long post, but I think I'll bullet point my story and questions in order to make this post more easily digestible.

* For a couple years now I've had bouts of blurry/cloudy vision in right eye when on work teams calls. I always wrote it off to staring too long at screen without blinking and my contact going dry on me. I'd just move away from screen, blink more than usual and within 30min or so vision would go back to 'normal'.

* Turns out at recent optometrist appointment, and then off to hospital after urgent referral, pressure in right eye was in the 50's and left eye in the high 30's. Opthalmologist also suggests I've lost about 90% vision in right eye (but to me I'd say about 60% if I compare vision by alternating closing left and right eye (yup a real scientific method :) ). I'm on Latanoprost/Timolol/Iopidine drops twice a day.

A few questions I have for advice/your experience of all this:

* My eye's feel really 'clean' after putting the drops in, don't know if anyone else has found that, but what I have noticed since using using the drops, is my near sight vision has really deteriorated. Before starting drops, I could read books/phone etc as per normal with my contacts or specs on, now I have to remove my specs if I want to read something. Any one else experienced that?

* Alcohol - I do enjoy a beer or three with friends after our weekly squash session. I've read on the Iopidine leaflet to avoid significant alcohol intake. I've been really strict and only have 2x shandies, but can tell that the alcohol effects are increased since starting the drops. Is it worth just stopping alcohol completely?

* More importantly though; my next follow up appointment with opthalmologist is in 3mths time (date still tbc by hospital). I would've thought they would want to see me after a month or so, is it normal to have to wait 3mths? I've actually booked myself another optometrist appointment for next week, just so that they can check my eye pressure. More of a reassurance for myself that drops are working and all is going 'ok'. Do I call the hospital and ask for an earlier appointment, can I even request this?

Again - hope most of you have made it through my post still awake!

Keep well

Nico

14 Replies

I would push for an earlier appointment. I had a reading of 50 in one eye, and they admitted me to hospital and had surgery a few days later. Your situation may well be different to mine, but I'd push hard to get something much sooner.

glauca profile image
glauca in reply to AlfredV

Thanks for quick reply. Hope all going ok after your surgery?

I'll do some digging to see if I can request an earlier appointment. Perhaps at the optometrist appointment next week, if pressures are ok, then that will allay some of my fears.

AlfredV profile image
AlfredV in reply to glauca

Thanks, I'm doing well now. A few pointers from my experience. When my eye pressures rose to about 35 I'd start to see rainbow halos around light sources. As they approached 50+ my vision would begin to mist over. For me, these symptoms were a good indicator that I needed something doing. However, it is possible to have halo or misty vision for other reasons than high eye pressure, but certainly for me it was a good indicator.

glauca profile image
glauca in reply to AlfredV

That's really useful info which I'll definitely bear in mind, thanks!

If you have only had the initial appointment where glaucoma was diagnosed, you should call the eye secretary and ask to be seen sooner so that they can check that the eye drops are working well in bringing your eye pressure down.

Visiting your optometrist next week, will show if the IOP has reduced, which will be a good indication that the drops are working.

Remember, if you feel any change ion your vision, halos around light, severe headaches or nausea within the appointment times, dont leave it and go to the A & E straight away. If the opthalmology department have a walk in clinic, go there instead. This could be sign that your eye pressure is increasing,

Having the occasional drink with friends is fine. make sure you sip rather than drink it all back in one go.

Check with your consultant at your next appointment about playing squash to see if this is still ok to do. It should be fine, but it is always worth checking as some sports, especially ones where you physically exert yourself can cause the IOP to rise and should be avoided.

Thanks for the info.

Forgive my newbie-ness, but who is the eye secretary, is it the contact phone number for the eye clinic at the hospital I'm being seen at?

Re: squash. The consultant did mention pigmentary glaucoma at the checkup, but once she put some drops in to dilate my eye, then checked again after 30min, she suggested that it likely is not pigmentary and that squash and other exercise should be fine, but of course will check again in 3mths. It's the 3mths wait that has me concerned. I would've imagined they'd want to see me sooner than that. Oh well??

I will follow your advice about going in if I feel the need. The hospital does have an Eye A&E, so may just do that if I have concerns. My vision has definitely changed since using the drops, particularly the near sighted vision, but otherwise, the blurry/mistiness that I was experiencing has gone away.

Trish_GlaucomaUK profile image
Trish_GlaucomaUKPartner in reply to glauca

The eye secretary, is the secretary that covers the consultants. They will be able to check with the consultant and get back to you. It is better to call them that the appointment section as there is more chance in getting the appointment brought forward. A 3 month wait after the 1st consultation is unusual, as they normally like to see you 1-2 months to see if the drops are working. As you are due to see an optometrist next week, they will check your IOP and will show whether the drops are working. If the IOP is still high, call the eye secretary.

I would have your pressures tested again asp and not wait 3 months. Like Alfred, my right eye was 56 and A & E put me on tablets to try to bring the pressure down there and then. It did but went back up and I had urgent surgery 3 days later. Left eye was still high in the late 20s and have had surgery on that eye 5 days ago. Both eyes have now had the Preserflo Surgery and the pressures are now 8 and 9.

The A & E I went to was an Eye Hospital and not a general A & E department.

glauca profile image
glauca in reply to Flowergirl24

Hi, thanks for the info. The hospital I go to also has an Eye A&E. I'll have the optometrist appointment next week, and they check pressures too. Will see outcome of that and decide if will head in or not. Either way, I will also get in touch with eye secretary to ask for an earlier appointment

Zen100 profile image
Zen100 in reply to glauca

At my clinic the standard is 6 weeks follow up after starting drops (Monoprost in my case as I have Dry Eye Disease). At the 6 week follow up they can see if the drops are working. So definitely 3 months is too long. Good luck.

Hi! Responding with my thoughts on your points in order:

Glaucoma treatment whether drops or procedures do seem to have had an impact on my visual acuity. I have noticed changes to my near vision but not significant enough for my consultant to be concerned. You could get your prescription checked in case it’s changed. My experience is that if you’ve just bought new specs or lenses at great expense then its sod’s law your prescription will change quite soon after. 🙄

Alcohol (ethanol) - a few years ago I reported an issue when starting on a new combined drop and Brimonadine was identified as the likely suspect. Not sure if that’s in the same family as Lopodine. Minute amounts of alcohol caused me to feel so giddy I had to lie down after drinking and I felt very unsafe. I had to stop drinking whilst I took the drops so I was teetotal for a year (through lockdown too so great timing!🙄) My eyes also had an allergic reaction (very painful) so when they changed me to preservative free drops they also changed me to another eye drop, which happily causes no reaction to alcohol for me. So maybe stop drinking and report your issue to consultants secretary as they may be able to change your drop.

3 months wait-I would have thought they’d see you earlier to check your first drops are working. There’s long delays at my hospital at the moment, so it’s hard to know if it’s due to pressures at NHS… or they just don’t think I’m that urgent! 🫤

Good luck! 👍🏻

glauca profile image
glauca in reply to Beecalmed

Thank you all for the very helpful comments and life experience. I think I'll definitely get in touch with the eye secretary , regardless of optometrist appointment, to ask to be seen earlier than 3mths.

I wasn’t so fortunate. I had bilateral laser iridotomies just before Christmas (acute glaucoma) but no F/U appt. Admin told me I was discharged. Eventually persuaded them to give me appt - end of July. Cataracts became significant problem- so ended up spending my Covid-19 savings on private surgery. Feel rather guilty…

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