Is it a good idea to measure your own IOP?

[NAngleClosedGlaucoma]

Is it a good idea to measure your own IOP? And if it’s high what do you do? I can’t raise my eye drops as apparently I’m on the max of all t

[PeterRabbit62]

I would say no definitely not unless your Opthalmologist wants you to and tells you how to.

[NAngleClosedGlaucoma in reply to PeterRabbit62]

I had an appointment with her today and she said it’s unnecessary as I can see her when I need to but my pressures should stay down now after iridotomy. Thanks for your reply too.

[warwickshire_singh]

if medication isn't working, the next step should be some kind of surgery

[NAngleClosedGlaucoma in reply to warwickshire_singh]

Unfortunately I had cataract surgery and a smaller lens implanted with astonishingly sharp vision after it but my fuch’s dystrophy kick in and now blurry which is why they cancelled the same for my left eye. 😓

[Laura7777]

Measuring your own IOPs is a personal matter and it possibly depends on your condition. I measure my IOPs and I have normal tension glaucoma with the rule being that my pressures should not go above 12 and preferably, stay at 10 or below.

It all started because I was under 30 on diagnosis. I had already lost all my peripheral vision and had just 5% of my central vision left. An eminent glaucoma professor I consulted advised me to have my IOPs measured every 2 weeks at my local optician so that if there was any change I could seek medical help to get them lowered and so preserve my remaining sight. Despite moving around the country and consequently changing opticians and consultants, I followed this advice for many years. During that time, if my pressures increased they were checked again on successive days, I increased the Diamox tablets I took daily anyway and if there was still no improvement I contacted my (private) consultant who saw me as a matter of urgency and changed/added to my drops. It was only keeping track of my own IOPs that my glaucoma has not progressed in the last 40 years. The various consultants I have had over the years all agreed I should carry on with my own monitoring.

Eventually it became possible to monitor my IOPs at home courtesy of ICare tonometers. My husband has been taking my IOPs and we have also purchased an ICare Home tonometer which enables me to take the pressures myself. Both of these machines are extremely accurate and my consultants have been happy for me to move to home monitoring. They aren't cheap and I know I am fortunate to be able to buy them. I would be lost without them and would feel that I've lost control of my glaucoma.

We don't know when our IOPs have risen; and we don't know of it is a blip or whether there is something wrong that needs treating. Being able to measure our IOPs saves us bothering a consultant needlessly and also allows us to seek help urgently when needed.

As to what action can be taken if IOPs rise, many, like me, have a contingency plan for such times. Sometimes it's a matter of lifestyle changes -eg leave the stress that is causing the IOP rise and these are easily rectified if you know aout them. Sometimes there is no apparent reason and at such times I increase my Diamox tablets and slow down. If that fails, then I 'bother' my Consultant. The last time I did that, I had a new drop added to my cocktail as luckily the new Roclanda drop had become avilable. There is usually something that can be done to lower IOPs even if it's just changing the cocktail of drops.

As I said at the start of this far too long post, it is a personal matter whether you feel it is worth measuring your own IOPs. I think it probably only works for those with Open Angle Glaucoma though. For some it provides a feeling of control of a worrying condition, others find it reassuring to be involved in the management of their condition and for others it brings peace of mind. For others it is a way of keeping track of what is happening to them in these days of repeatedly cancelled hospital appointments.

Good Luck on you glaucoma journey,

Best Wishes, Laura

[NAngleClosedGlaucoma in reply to Laura7777]

Wow thanks for sharing part of your amazing journey. You were so young getting it. It is a learning curve no doubt. My fuch’s dystrophy is what conflicts with my treatment. And as such leaves me wondering what they can do if IOP does go higher. The ophthalmologist just said because of it a corneal transplant is not really favourable and my body might reject it and I could possibly lose all sight in the eye. So I still don’t know. I think I’ll stick to going to opticians if any symptoms arise for the moment. Presently I have blocked ducts around my eyes which leaves them very dry. So now I’m to get heated mask and massage them to open them up. I’m always very careful with cleanliness around my eyes so it must be a side effect from the drops or something. It’s just one more thing to add to the unending list !! Anyway thanks for your sharing.

[Laura7777 in reply to NAngleClosedGlaucoma]

Hello NAngleClosedGlaucoma.

Sticking with the opticians seems a good plan for your case and I hope you have found a friendly knowledgeable one that you can trust and rely on.

The 'little things' like blocked ducts, dry eye and even just plain old sore eyes are the things that the consultants don't tell you about and they don't have much time for them or the many side effects that come with treatment. I know it's silly, but I find it's these 'little things' which really can get you down. Good luck with your heated mask and massage; I have found that routine very helpful in the past but thankfully I have not had to do it for a few years now.

I was young to get glaucoma, 28, and I have had a long journey, I am now 68. I feel I have come through it more or less in one piece and the things I have had to give up - driving and my career being the biggest things - I have managed to work around without ruining my life or that of my husband's. Even having so little sight and being classified as 'blind' has been manageable and I keep my fingers crossed that I can carry on as I have for the rest of my days.

Take Care and Good Luck,

Best Wishes, Laura