Advice for newly diagnosed

[dillydream]

Hi. I was diagnosed with normal pressure glaucoma a couple of months ago and was given monoprost single use eye drops . I’m 76, both parents had glaucoma, mum lost sight in one eye suddenly in her 50’s so I’m lucky to have got so far.

At my first hospital appt since the diagnosis, the doctor was off sick so I got the tests only. A letter will follow( if I don’t have to chase it up as I had to in order get this appointment) So I had no chance to ask questions. Can anyone help?

My main query is this - my pressures are now 14 and 15 which I understand is mid range. This might seem a daft question but can they go too low if they’re normal and I’m using the eye drops? Should they be monitored regularly?

Is there anything else I need to do? I read something about low blood pressure, which I have, not helping, and the usefulness of B3

Have done the Dvla fields test which seemed to me to be ok. Oddly, the lights on the Specsavers machine (Zeiss) were brighter than I’ve had before. Driving is important for me as I help a daughter who is sight impaired ( a rare metabolic disorder, gyrate atrophy, unconnected to glaucoma as far as I know) I asked for a copy as suggested here but it was refused.

How do you time the 3 yearly over70’s dvla renewal with the glaucoma test? Will they happen together?

All advice welcome. I’m used to questioning eye docs. I’ve had 30 odd years experience but this is new to me

Thanks in advance

[Cornwalleyes]

Hi, I have normal pressure glaucoma - my pressures were between 12 and 16 but damage was still being done to my optic nerve so I have had one trabulectomy, waiting for the second. In the eye that’s had the op the pressure is usually 8 - which may seem low but evidently is working fine for me. So I think that’s the problem with “normal pressure” it’s different for everyone. The important thing is to keep checking the optic nerve and having the sight tests which you clearly do. I suspect the DVLA will move you to that schedule, rather than the over 70’s one as the glaucoma tests are usually three yearly or less, depending on age, results, etc.

You can always get an optician to check your pressures for you if you are worried, but you will have to pay and their machines are not quite as accurate, but it’s worth it if you’re concerned.

Hope that helps.

[dillydream in reply to Cornwalleyes]

Thank you Cornwalleyes, very reassuring. I will check the pressures regularly. I’m in Plymouth so will try the ophthalmology student centre which should have up to date equipment. Thanks again.

[whitedog]

Hi

I can't answer your DVLA questions but just to say pressures can go low as well as high and you should expect to be monitored regularly. Even though you didn't see the doctor, the results of your scans/tests will have been reported to him/her. For years I visited a glaucoma monitoring unit at my local hospital rather than seeing a doctor. The consultant would then write to my GP to confirm that my eyes were stable - or not. That seemed to change since lockdown and the last few times I've seen either my consultant or one of his team.

I mentioned, last year, that one of my drops, Cosopt, was now stinging a lot - I think due to existing inflammation and dry eye so, as my pressures were deemed to be a bit low at the time, my consultant suggested we stop that particular drop. However, at my next appointment they'd gone too high again so it was re-instated. It does show how important the drops are and how essential regular monitoring is. I had a drainage tube inserted about 10 years ago but still need the drops - I also use Monopost and unlike Cosopt, it doesn't sting at all.

After one of my operations, the pressure in that eye actually went down to zero - I could tell something was wrong as my eye felt sunken. I went back and they injected gel in to get them back up.

[dillydream]

Thank you white dog, that does emphasise how important it is to keep monitoring the pressures.